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Papillary Renal Cell Carcinoma- Anyone Experiencing This or is a Survivor?

AlwaysHaveHope
Posts: 29
Joined: Jan 2009

Hi,
In 2007, my mom tried her hardest to find out the cause for her lower back pain and leg weakness, and after a long run-around and missed diagnosis by her Primary Care doctor, she finally was diagnosed by a urologist with Papillary Renal Cell Carcinoma in her right kidney, which had been there for quite a while. As if it wasn't bad enough to have a specialist tell my mom she maybe had 5 years to live (which by the way, we don’t pay attention to, no one on earth can tell you that sort of thing), on top of that, she was told that the cancer in her kidney had spread to her right adrenal gland and she had extensive blood clotting in her vena cava. When she had surgery in Feb. of ’08, they removed her right kidney, adrenal gland, and split her chest open like they do in open heart surgery so they could remove the blood clots in her vena cava. She was also put on a bi-pass machine during the surgery, because of the amount of blood loss she would experience. It was also discovered during surgery that some of her lymph nodes were cancerous. She surprised all the doctors there, when she made it through surgery.

Though they removed pretty much all they could in surgery, there was and still are cancerous lymph nodes left in her chest and abdomen. All last year, she has been in and out of the hospital dealing with several side effects of treatment that she’s been taking to try to reduce the cancer in her lymph nodes. She's tried pill forms of treatment such as Nexavar and Sutent, which didn’t work and has already tried 2 different kinds of chemo treatments, which also haven't worked. She's experienced everything you can imagine when it comes to side effects. As her daughter and in my early 20's, I never imagined that I would have to see my mom suffer so much.

Mom found out last week that the fluid drained off of her recently came back positive for cancer cells, which we’ve been told is not a good sign. She's also recently gone off her latest chemo treatment and her next chemo option was denied last week by her insurance, because it wasn’t specifically a kidney cancer treatment. They’ve basically been experimenting on her, as she says, with different treatments that are out there.

Papillary Renal Cell Carcinoma is rare, as we’ve been told many times and Mom's been saying for a while now, how she'd like to find out if there's someone else out there who has been through this or anything close to it. Has anyone experienced the same kind of cancer or had any similar experiences? Had any treatments that show some sign of success?

Thanks to anyone willing to reply.

bangormom
Posts: 59
Joined: Dec 2008

Hi,

Yes there are others out here, and I have been through most of what your mom has gone through. I'm 44 I hope to turn 45 in march. I have this in my whole lymph node system and in my liver, lungs possible spine.Has your moms doctor tried Torisel? Thats one of the better ones for papillary, I tried but I'm to allergic to it. And there is a new one thats suppose to come out I think in april, well I hope so anyway.

Any way there are other sites that are a little more active, one is the kidney cancer association, and on acor there are 2 mailing lists one for clear cell rcc and one for papillary. I am sighned up for both there is alot of info on those sites. Also is your mom seeing an rcc speacilist? if not try to find her one because regular chemo does not work on this monster. It's a very scary thing, I found out about a genetic link, it's an fh gene and when that gene does not funtion right it increases your risk by I think it 50%. I was told about it because I had a hysterectomy 10 years ago because of fibriod tumors, and some weird skin things that I never got tested. My grand father died of rcc back in 76, and now I'll have to have my kids checked I don't want them going through this.

Anyway I hope I have helped and maybe a little comfort.

You and your mom are in my prayers,

Maryann stage 4 papillary type 2

AlwaysHaveHope
Posts: 29
Joined: Jan 2009

Hi bangormom,
Thanks for the reply. I was suprised to hear from someone, especially someone who seems to have gone through the same thing as my mom. You know, your own situation sounds so much like my mom. She had uterine cancer in my senior year of high school and had a hysterectomy as a result. Now, almost five years later she has PRCC cancer. It's odd, because I just read a few of the other peoples' discussions on this site and a lot of them who have gotton a form of RCC have started out with some sort of female related cancer like that and had surgery, as well. I wonder if PRCC is related to that?

Yes, my mom does have a specialist, a really great doctor at our local cancer institute, who happens to have been along for the "ride" since her surgery. The chemos and pills that she's already tried with no success were for kidney cancers. They did mention one other treatment option, a chemo that is really extreme and harsh on the body, but they basically told her she could go through a lot of pain and stress to her body and it still probably wouldn't yield any results. So that was out of the option. Unfortunately, her oncologist told her a few days ago that there really wasn't any other treatments out there for her and that the only thing they could really do for her now is make her comfortable, like continuing to watch her cumadine levels to make sure she doesn't get blood clots and draining fluid off her. It's a hard thing to hear, that there's no other real treatment options. She has however, asked to take the chemo she last tried again but to try it this time for a longer span of time. They agreed to let her try. I don't know if she's tried Torisel, which you mentioned, but it does sound familiar.

My mom's oncologist once told her that this cancer is the hereditary kind. No one in our family has ever had this kind of cancer, but cancer runs on my mom's side of the family. You said something about genes and a genetic link. What do you know about this cancer being passed onto children? Although that's not really something I'm thinking about right now, it's interesting to know whether this should be something I should look out for in my own future.

Thanks again for replying and sharing with me. It really helps to have someone to talk with about this. I will keep you in my own prayers, as well. Thanks.

bangormom
Posts: 59
Joined: Dec 2008

Hi Always have hope,

I'm going to continue to pray for your mom. I also had a doctor tell me there wasn't much out there for me to. It's a hard thing to deal with.

I am going to try for a clinical trial, because I don't want to run out of options, but first my doctor wants to try Nexavar, I hate what these med do to the rest of my system but giving up for me right now is not an option. My kids still need me espeacilly my autistic son. As far as hereditay goes, I want my kids tested so they can be more vigulant in the future so if they get this monster they maybe can catch it early enough to live their normal life, and for their children. It's horrible to think that my kids could possibly go through this.

Please keep me posted on how your mom is doing.

Thanks,

Maryann

bangormom
Posts: 59
Joined: Dec 2008

Hi

It's me again, I'm just wondering how you and your mom are doing? I'm still praying for all of you. I hope you and your mom are ok. Just to let you know that I do care, and it helps me if I can help you and your mom in anyway. Please update if you can.

Maryann

AlwaysHaveHope
Posts: 29
Joined: Jan 2009

Hi,

I'm glad to hear from you. My mom and I are doing okay.

This past week has been kind of hard, actually it's been quite depressing for me. One of those weeks where she just has felt really not herself and has been experiencing the usual side effects to be expected from her treatment. The cancer has been on her mind all week, you know...sometimes you can go a few days like nothings wrong and then some days it's like that's the only thing you can think about. It is so hard coming home from work and seeing her sitting in her chair all covered up or sitting down at the dinner table, only to have her shove her plate aside and watch her get upset because she can't eat what she wants and because the accumilating fluid is making her feel so bad. Where all you'd like to do is cry with her, but you know it makes her experience that much worse for her if you do. But I've realized, especially after this week, that all you can do is take one day at a time.

She's done maybe two or three treatments so far, on the chemo she has decided to give a second try at. I asked her and she just so happens to be taking Torisel, the chemo you were talking about. She hasn't really been able to eat a lot this past week and the nearly 50 lbs. of fluid she has on her body right now has been making it really hard for her to move around.

We have stairs and it's like 13 steps. It is really hard for her to get to the top of the steps at night and since it doesn't look like things are going to be getting better anytime in the near future, she's been considering looking into getting an elevator installed in the house. But we'll see.

I'm going with her for her next treatment at the end of the week.

Well, thanks for listening. I hope you are doing okay. I'd like to keep up with you and how you are doing, as well. Thanks.

bangormom
Posts: 59
Joined: Dec 2008

Hi again,

I've noticed it can be really hard to get this crap off of your mind when it gets in there. One of the things that I tried is to get out of the house, I have a wheel chair that a freind gave me, I hate using it but it does make it easier to get out and about, I walk for a little and then sit for awhile. Then the issue comes into play when you go to the mall and you start to look at things, like spring is coming and I like lawn swings so I thought I would get a swing to sit on outside, well then you start to think 'I may not be able to enjoy that, so it would be a waste of money.' My husbands says not to think that way, but as you know it's hard. However if your mom is up to getting out of the house even for an hour or so it may help her emotionaly. It stinks going to the doctors and coming home, it seems that is what your life is about, but it's not and sometimes if you can enjoy even just going to a park it can pick up your spirits.

One question, did the doctor say why she's building up fluid? My doctor didn't tell me either, however he's sending me for an mri, and bone scan and a chest-x-ray, to check on the fluid. How are the se's of the torisel? I pray they aren't to rough. I may be able to start on nexavar soon, at least that is the hope anyway. I thinks it's great that you are going with your mom to her next treatment, it'll be good for her to have you there, you seem to good at supporting your mom, I know my daughter feels like crying alot, and she wont in front of me she goes to her room and turns up the music, I don't know if it helps her or not, but I feel for her as I know all to well what it is like to lose a parent at a young age, my mom passed when she was 45 and I was 16, go figure I'll be 45 in a couple of weeks. But to sum it up today I feel ok, tomarrow who knows your idea of one day at a time is good, I'll follow that to.

Still praying for you and your mom,

Maryann

AlwaysHaveHope
Posts: 29
Joined: Jan 2009

Hi,

How are you doing?

So you are experiencing fluid, too? Sorry to hear that. Yeah, the doc said my mom's fluid is caused by the cancer and the cancer cells that they discovered in the fluid. Odd and somewhat difficult to understand, but that's just another thing that's bad about this type of cancer, I guess. Its funny you should ask about the side effects of the Torisel. When she was taking it last time, she didn't have any difficulties. Now, it's causing a bunch of issues, like stomach issues, redness and sensitivity on her tongue, dry mouth, & weakness. I hope when you go on Nexavar, that it will be able to help you and that you won't experience the side effects mom had when she had tried that pill treatment. Treatments have different reactions for everyone, though.

I know what you mean about getting out of the house sometimes when it's hard to deal with. Mom and I went to the mall this past weekend. I rolled her around in a wheelchair while we looked at clothes. For a few hours, it felt kind of like it used to, when we used to go out all day shopping together. It was a rare moment, but it was nice.

Mom's going to be getting a chair lift for the stairs here at the house sometime this week. It will be money well spent. She has such a hard time walking from one room to another, much less getting up the stairs every night. Mom talked to a nice man at the hospital while she was waiting to get fluid drawn off, who's going to give her his wife's wheelchair she has no use for anymore. We've recently found out how hard it is to find a wheelchair at stores that you go into. When we went to the mall last weekend, I had to go down to some employee area, search for someone to ask, and leave my drivers license as collateral just for a wheelchair to use. No one should have to go through all that just to be able to borrow a wheelchair.

I know what you mean about not knowing if you'll get to enjoy the things you want to. Mom loves Spring and planting flowers and that's something we both would normally do together, but things have changed and all though we may not be able to plant flowers together, at least she will be able to enjoy the sight of them when spring comes.

Everyone's situation is different and I don't begin to know how someone else may be feeling, but tell your daughter, if she ever needs someone who can relate to what she may be going through, I'm free to listen... Well, best wishes to you and I'll talk with you again soon.

bangormom
Posts: 59
Joined: Dec 2008

Hi,

Well, I started Nexavar on monday, and I only took half the dose because I'm afraid of being allergic to it. Well I wound up in the emergency room I was coughing up small blood clots. It turned out my protime level was to high again and with the cold I have been battling I broke a capillary and thats why I was coughing that up. I'm all better now, just tired and dizzy I think thats from the Nexavar.

It's hard to believe that it's so hard to rent a chair for your mom, I was lucky mine was given to me by a friend. Have you asked her doctor about getting her insurance to cover it? If you can do that maybe then you could visit some medical supply stores, I'm not sure but check with acs they might have something that could help also. I firmly believe that getting to the mall like you used to do with your mom is really good therapy for everyone.

If I am able I want to plant my flowers, and I really want to watch them grow, come on spring! It stinks that this cancer is taking so much out of us and those we love, I enjoy the fact that I see things differently, I just wish it wasn't cancer that opend my eyes. Your mom is so blessed to have you in her life, and I'll keep praying for your mom and you, and I hope we can talk soon.

Maryann

dawnmomofthree
Posts: 39
Joined: Mar 2009

Hi Maryann and AlwaysHaveHope,

I am so glad that I found your thread. My father in law has just been diagnosed with papillary renal cell carcinoma and I am trying to research it for him and gather treatment options. Since this is a rare form of kidney cancer, it has been difficult to find anything and what I have found has been rather discouraging.

After reading your both of your messages I am so inspired by your story, Maryann and by your mom's story Alwayshavehope. It is so comforting to know that there are others out there who are also struggling with this. Maryann I am praying that the Nexavar starts to work for you.

If either of you have any sort of resource you can direct me to that will show me the best treatment options for this sort of cancer, please let me know. My fil has already had his kidney removed and the cancer, a year later, is back in his abdomen. We are in the process of checking the rest of his body to make sure it hasn't spread anywhere else. I would really like to educate myself on all of his treatment options. Much of what I have found so far, only seems to mention clear cell renal carcinoma, rather than the papillary.

Well best of luck to both of you. I'll be checking back in you often and you both are in my prayers.

Dawn

bangormom
Posts: 59
Joined: Dec 2008

Hi Dawn,

Have you checked the kidney cancer associations web site? Also ACOR has a papillary and clear cell mailing list, I sighned on for both. Basicly my doctor has thrown just about everything at me. Torisel works better on papillary, some even see some success on Sutent. You need to make sure you father inlaw see's an rcc speacilist, they know more then a regular oncoligist. A new drug is due to be released by the fda any day now, it works like torisel but it in pill form, I'm praying if Nexavar doesn't work for me I can get onto this new drug the trial name is rad-001. It turns out that I am allergic to torisel, so I can't take it. That was very disapointing for me as it is supposed to work best.

You can also log onto the NIH's web site for clincal trials, they have one going it used to be called xl880, and that is showing great promise too. I can't do it because I tried 2 other therapy's the resaerch nurse there tried to hard but I was declined any way. I have her phone # but I don't want to post it on a public forum, they pay for all the drugs and scans that go on during the clinical trial. I don't know if you can see my e-mail address on my profile. I'll add you to my freinds list and try that.

I hope some of the info I gave helps. I am stage 4 with too many mets to list at this point, try to think possitive, I know how hard that is believe me. But some say attude is everything. I'll pray for you and your father.

God bless,

Maryann

AlwaysHaveHope
Posts: 29
Joined: Jan 2009

Hi,
Sorry for not replying to your message....it's been a while, hasn't it?! So many things have been going on lately, I guess I just couldn't get in the right mood to check in.

I'm sorry that you ended up in the hospital on your first go around with Nexavar. Are you doing okay, now...? Sorry, but I don't have too many good things to say about Nexavar. My mom had tried that one and it gave her so many side effects. Keep an eye on your feet. Nexavar made the bottom of mom's feet thickly callused and on top of that, it made her feet have shooting pains in the bottom of her feet that made it hard to wear shoes or even walk and had a redness to them, too. It also made her mouth extremely dry and gave her tounge a strange sensation. I can't remember all the problems she encountered with the pill because it was so long ago that she had been on it, but it was one she couldn't take anymore not just because of side effects, but because it wasn't doing the job.

Are you still taking Nexavar? How's it working for you so far? Hope this will work for you and that you won't experience anything bad while on it.

A lot has happened here lately. I went with mom to one of her appointments at the cancer institute over a week ago and listened as my mom made the decision to stop taking chemo (Torisel). As I had mentioned, it was her second attempt with Torisel, she was grasping at straws really; trying to take it for a longer period of time to see if that'd make a difference with the cancer. The side effects were just too much for her to handle. She wasn't eating, energy level was almost non-existant, and experiencing numerous stomach problems everyday because of the Torisel. She told me that if this was how the rest of her life was going to be, she rather be able to eat at least, so she could have some sort of enjoyment left. That day was a hard one. Her oncologist agreed with her decision and talked about how it wasn't doing any real good anyway; that he was able to tell due to the way she was accumilating fluid so rapidly and that the only thing they could really do for her now was eventually offer her hospice care at home when it came to it. It was so hard wheeling my mom out of that office, we were both crying. It was like a nightmare, and although I understood there really isn't any other options for my mom treatment wise, it was like her doctor had just said he was giving up on her and that made me mad and upset. It was even worse when I had to watch my dad cry, when we got home that evening and mom told him she had made the decision to go off chemo.

Then last week, my dad took mom to the ER. She was so miserable feeling...fluid had accumilated so much on her that she couldn't get around and due to not eating, she was weak. The ER doctors took 13 liters of fluid off her. The oncologist had waited too long to schedule her usual appt. for fluid draining and it took her having to go to the ER to do something about it. She was admitted to the hospital and stayed in there all last week. While she was there, they went ahead and did surgery to give her the drainage tube in her stomach that would allow her to drain the fluid off herself at home. So now we have nurses coming to show us how to do that. It got scary for a couple of days while she was in the hospital; they had found out her one remaining kidney was only functioning at 20%. What made us all really mad about that was come to find out, her cancer doctor knew her kidney function had been gradually declining since December, but never bothered to tell my mom or any of us that. They gave her fluids and thankfully her kidney function got better as the days passed, though. We also found out that a medicine my mom's been taking lately that was prescribed by her doctor, can damage your kidneys. Wouldn't that have been nice to know...?! Anyways, she got sent home, looking better and hardley has any of her old medicines to take (her blood pressure, come to find out, was too low; she'd been taking too much blood pressure meds).

I'm so glad to have her back at home now. She still wasn't eating, but one of the nurses that came to the house the other day suggested to her doctor a medicine that encourages an appetite. So, she tried it last night for the first time and today she's actually eaten something for the first time in a long time. That's been one of the worst things to watch lately; mom sitting at the table with her plate in front of her, trying one bite and hanging her head over in tears sometimes not being able to eat anything. I hope this medicine works good, it seems to be a great start.

Maryann, again I am sorry for not responding sooner, but hope you can understand. What is this upcoming trial you were mentioning to Dawn? Is it coming out soon and will it be something available to people on the east coast?

Well, it's raining and it's really late. I'm going to crawl in bed. It's been a long day. Hope to hear back from you soon, Maryann and hope to hear that you are doing okay.

bangormom
Posts: 59
Joined: Dec 2008

Hi Always have hope,

I am so sorry that your mom hasn't been doing well, I figured that was why you weren't on line. I have been praying for you and your mom well your whole family. She has made a very hard decision, one I thought I would have to make 2 weeks ago. Sounds like her doctor slipped up with the fluid. Mine appearently isn't enough to treat, my doctor hasn't even mentioned it lately. I am so sorry that she's had to suffer so much lately, I wish I could help.

If the med to make her hungery is helping, that will not only help her mentally but physically also, I know that from getting down to 100 lbs. My doctor had to put me on predisone for my reaction to Nexavar, which was so extreme that I have been off of it for 10 days and I'm still not cleared up! We don't know if it was working or not, I had a node on my right collar bone that was enlarged before I started it and it did shrink during the 10 days I was on it. I have been off for 11 days now, I'm supposed to restart on monday at a lower dose. I wont go into the details of what it did to me, but that is one nasty little pill it laid me out flat on my back, I said what your mom said, if this is what the rest of my life is going to be like, it's not worth it.

How often does your mom see her doctor? Because I really think they should have caught the bp thing much sooner then they did. I have been checking my own at home, as many of these treatments do raise the bp, it seems as I try a new pill one will raise it, and then
when I'm off treatment my bp goes down sometimes pretty low. I only take my bp meds when I am on a treatment.

Just wanted you to know that a new pill is coming out, it's clinical trial name is rad001 and it is supposed to do what torisel is supposed to do, but by a different pathway, and that makes it good for papillary, some have reported only minimal side effects. If I can't take the Nexavar I want to be on that, or give it a shot anyway. Maybe if it gets approval soon enough your mom might be willing to try it. It sounds as if she has made her decision tho, but she can always change her mind, after all it is a womans progitive to change ones mind.

I am really glad that her kidney fuction is getting better, some times when we get dehydrated our function goes down as well. I am praying that the hunger pill and kidney function will help her to feel better soon so she can enjoy life more than she has. I hate cancer and what it does not just to the patient, but to those who love the patient as well, but one thing that this beast can't do is take the love we have for family and freinds away, please remember that as you have been going through so much.

I hope you are able to respond soon and let me know how you and your mom are doing, I will keep you and your family in my prayers. I hope your dad is taking care of himself so he doesn't get sick to this is such a tough time. Don't worry I understand what you are going through, as my mom passed away when I was 16 she too had cancer. so reply when you are up to it, take the time you need. I am just so sorry that your mom hasn't been doing so good, just keep us posted when you can.

Maryann

ps: if there is anything I can do please let me know, I am here for you.

dawnmomofthree
Posts: 39
Joined: Mar 2009

Hi Maryann,

Thanks so much for all of your information. I did manage to sign up for ACOR's Papillary renal cell listserv and it looks great. I am also slowly but surely getting more information about the clinical trials. At this point I am kind of still hoping it won't be that bad. My father in law is having further tests done at the Cleveland Clinic next Friday to see if the cancer has spread anywhere. If not, then maybe he can receive surgical treatment and all of the drugs and clinical trials stuff may not even be necessary. His one doctor even mentioned "freezing the cancer off" as a possibility. I guess its called cryotherapy. Have you ever heard of this?

Anyway, I'm still gathering information and appreciate all of your suggestions. I'm hoping some of these drugs work for you. I think I read in one of your earlier posts that you are a mother. For me, that would be the hardest thing trying to fight something like this and worrying about your kids at the same time. Again I am inspired and humbled by your courage. Keep fighting the good fight and know that I have been praying for you and your family daily.

Dawn

AlwaysHaveHope
Posts: 29
Joined: Jan 2009

Hi Dawn,

Sorry for not replying. I've been away from my computer for a couple of weeks now. So much has been going on lately, that I haven't been in a very good mood until now. My mom was in the hospital last week and so on and so on...

As for your father-in-law, I am very sorry to hear that he was recently diagnosed with PRCC. This cancer is a tough one, but from what I've heard, there are people out there who have had success with some of the available drugs that they offer for this cancer. I hope that he can have this resolved with surgery and not have to go through any treatments. The thing to remember is that every person's case is different and no matter what, do not give up. That's the one thing that I struggle with everyday, lately. Also, don't forget to be there for your father-in-law. You will find that by just being there for times when he will need you emotionally or physically, makes all the difference to someone diagnosed with cancer.

Unfortunately, I do not know too much about any websites to go to for researching. I tried researching a year or two ago on this type of cancer and when I did find a website that even mentioned the cancer, it was like there was no helpful information. I made a conscious and personal decision to not go on any further in researching it. I think I'm going to take a look this weekend at that website that Maryann suggested to you, though. The one thing I can stress above all others though is: first, make sure he has a good oncologist who is on top of his game, so to speak... and two, make sure that no matter what type of news you may or may not get about his cancer, do not take one doctor's word for it... sometimes getting more than one opinion, can mean everything.

Well, hope that I was able to offer a few good words of advice. Please stay in contact through my post. Would be glad to hear back from you and would like to know what you find out further about your father-in-law.

Thanks.

bangormom
Posts: 59
Joined: Dec 2008

Hi Dawn,

It sounds like your father in law is going to one of the better places for this type of cancer. He will probably need treatment tho, if there is any spread what so ever, because there could be micro scopic cells all over the place that aren't seen on scans. The doctors will know more then I.

I try to help, I started my jurney with this in august of 08 and I am still learning as I go. There is alot to learn and knowledge is power as they say. I haven't been on any clinical trials as most I don't qualify for for one reason or the other. But I know of others who have been able to extend their lifes by months and years. However most of them are clear cell and that makes a big difference as most kc dxs are clear cell and there for more of the research if focused on that.

Please let me know how you and your father in law are doing and I am here if you need to talk. It helps me if I can help someone else. It gives life a purpose. I am keep you and your family in my prayers, and pray that everything goes well.

Maryann

dawnmomofthree
Posts: 39
Joined: Mar 2009

Hi Maryann and AlwaysHaveHope,

First off, a big thankyou to both of you for your words of wisdom and support for me and my father in law. Lord knows I wish that both of you didn't have any wisdom or knowledge about this. But at least know that your experiences help those of us who are just beginning this process.

This last Friday my husband and I took my father in law to the Cleveland clinic for more diagnostic tests to see if/how much his cancer has spread. He had: 1) blood work done; 2) a CT scan of his abdomen and 3) an MRI of his liver/abdomen. After all of this we were suppossed to get to talk with his Dr. As is usually the case with large hospitals, they were running late so at 3:45 I realized we were not going to make the Dr. appointment (it was at 4:00 and about 5 buildings away!) because my fil hadn't even started his MRI yet. So finally after begging the Dr. on the phone for about 15 minutes he agreed to talk to my husband for a few minutes even if my fil couldn't make the appointment. I understand that the Dr has to have a life too and it was Friday at 5:00, but it was a little frustrating because we had drove up about 7 hours from Kentucky for the specific purpose of meeting this Dr. We have 3 small kids that we had to find childcare for also, so it is a big hassle for us to reschedule appointments when tests run late.

Anyway, I did not get to talk to the Dr because I needed to stay back and help my fil with the MRI. Turns out he is very claustrophobic and the MRI sent him into a major panic attack. Fortunately, my husband did get to talk to the Dr. and found out the following:

1) The cancer is stage IV;
2) They won't know his plan of care or recommended treatment until these tests he had have been evaluated, but it will probably involve further surgery and perhaps drug therapy;
3) He has sporadic papillary RCC, not the family or hereditary type; and
4) The average patient with this diagnosis lives approximately 3 months to 2 years after getting the diagnosis (this was tough to hear--we knew it was serious, but were hoping for a better prognosis).

I have to call back tomorrow and schedule a phone conference so we can go over the results of his tests and plan of care this week. My immediate questions are:

1) Does he have type I or type II prcc? My husband was told that since he has the sporadic type of PRCC they didn't test for the Type I or Type II. Is this correct ladies? Maryann, I think you said you had type II, do you have the hereditary type of PRCC?

2) Did they test enough areas of his body to make sure they caught all the areas where the cancer could spread? I know this cancer can spread to lungs, liver, bone and brain pretty easily. I don't feel like they ran any tests to catch brain and bone. What sorts of diagnostic tests did you undergo Maryann (and your Mom alwayshavehope) to determine how extensive the cancer was?

3) Should we get a 2nd opinion from a different medical facility just to check and see that the recommended plan of care from the Cleveland Clinic is a good one?

Any thoughts or opinions the two of you have about my questions above are greatly appreciated. I'll also try to post these questions on ACOR's papillary listserv. Much of this is me just venting my frustration and fear of this situation. I apologize for the long post but it does help a lot to be able to share some of this.

I pray that you are feeling well Maryann and I pray that your mom is doing well alwayshavehope. Take care ladies,
Dawn

bangormom
Posts: 59
Joined: Dec 2008

Hi Dawn,

It sounds as if you have your questions right, Yes, always get a second opinion, he has a good facility, but it never hurts to get a second opinion. I don't know how late you would've been for the appiontment, but being you traveled so far you would think that he or she could wait at least 1/2 hr to 45 minuetes.

Here's my list of tests, I had them before surgery, and then like 3 month's post.

1. Brain mri
2. Bone scan this test is a nuclear study, they inject you with radioactive stuff.
3. Blood test called a 'tumor marker'
4. I had a lung scan, this is because of coughing, and I had a pulminary embolis after surgery, the test is called vicue scan. (I probably spelled vicue wrong, sorry)

I have been trying to get the genetic testing done for the hereditary syndrome, but the insurance is saying no. However, with my medical history the doctors feel that it is hereditary.

Don't worry about the length of your post, I understand what it is like to have questions and that is what sites like this are for. I think I said it before, it helps me when I think that I am helping someone else. I too wish I didn't need to have this knowledge, I wish none of us had to have it. Your fil is very blessed to have you and your husband to drive him to these appointments and test's.

Do not feel bad about asking questions to anyone, esp the doctors remember they are working for you and your fil, it's not the other way around, it seems sometimes they think that.

Always have hope, I pray your mom is ok, haven't heard from you in awhile, I pray everthing is ok.

Dawn, please take time for you and your husband, don't let this burn you out, your fil will need the both of you, and you need to take some time for your selves remember that, it wont do him any good if you two get run down, so please take care.

You all are in my prayers,

Maryann

dawnmomofthree
Posts: 39
Joined: Mar 2009

Maryann,

Thank you so much for responding so quickly to my post. And also thank you for all of the information that you have given me in your post, above. I am also getting a lot of good information from the ACOR PRCC listserv people. You are on that one too aren't you? Anyway, I am going to process the information from everyone and formulate my next round of questions for the Dr. over the next couple of days. It looks like we may get a chance to talk to the Dr. again on Wednesday. One thing is for sure, we are going to try and get a second opinion for him as everyone I ask seems to say over and over--Yes get a 2nd opinion. I keep hearing the NIH in Bethesda Maryland is the place to go for this type of cancer. Where do you get your treatment?

Finally, with respect to the genetic testing, someone on the ACOR listserv told me that NIH/NCI in Bethesda will many times pay for the genetic testing if your insurance does not. Not sure if you have to be enrolled in a clinical trial for this to apply (I know NIH/NCI is federally sponsored clinical trials). Just wanted to throw that out to you in case you missed that email from the listserv. I'm sure you are very anxious to know if this is something your kids need to worry about.

I'll be checking back in soon. Until then, I hope you are feeling good. Are you still taking the Nexavar?

Dawn

bangormom
Posts: 59
Joined: Dec 2008

Hi Dawn,

You are quite welcome, I saw you on the listserve just now. I am really happy it is helping you. I have been in contact with a clinical study nurse at nih, I am hoping after I try Afinitor that when the time comes I can join a clinical trial. No I can't take the Nexavar, I seem to be allergic to it. The doctor put me on prednisone 10mg a day I got down to 100lbs and that seems to help my appetite and energy. So right now I feel pretty good, but that is what prednisone will do for you. Let me know if you need anything.

Good luck,

Maryann

dawnmomofthree
Posts: 39
Joined: Mar 2009

Hi Maryann,

How are you doing this week? I have been thinking about you and praying for you this week. How is the Afinitor going for you? Is Afinitor the new drug for PRCC that just came out?

Well we had a teleconference with my father-in-law's doctor today and got a lot of our questions answered. I felt like the doctor did take a lot of time to answer our questions. The bad news is that my fil's cancer has spread to several lymph nodes in his abdomen and he is no longer a surgical candidate. We are going to try and get him in the clinical trial for PRCC. If that doesn't work out, he will start on Torisel (don't know if I spelled this correctly). Anyway, we are very discouraged that the cancer has spread, but at least there is still treatment options available.

Hope you are having a good week. Take care of yourself.

Dawn

bangormom
Posts: 59
Joined: Dec 2008

Hi Dawn,

I'm glad that you got your questions answerd and I am saddend that your fil is not a canidate for surgery. If you have the chance ask his doctor about what used to be called xl880, it's a trial but they changed to name and for the life of me I can't seem to remember what they changed it to. With this trial you can only have tried one other drug ie; sutent or torisel. that is whay I was not able to participate in it, but I have heard that alot of papillary patients are seeing shrinkage and that is great news.

Afinitor does the same as torisel, only it is in pill form, I will start on friday. I feel about the same, just my cough is worse. I have to really get on the ball and start looking at clinical trials for me, becuase if the afinitor doesn't work then it is pallitive care for me, and I am not ready for that yet. How is your fil doing? How is he feeling? let me know. Thanks.

Maryann

dawnmomofthree
Posts: 39
Joined: Mar 2009

Hi Maryann,

Thanks for the message. I am following your advice and trying to get my fil into the GSK clinical trial (formerly the xl880 clinical trial). It's too soon yet to see if he will qualify, but I hope that he does. After reading your post about how you can't be in the trial if you have taken several drugs, I think this is a wise first step before we try other things. On a positive note, my fil still feels completely normal. You'd never guess his abdomen has several cancer tumors growing in it.

I hope that the Afinitor works well for you and hopefully you won't even have to mess with a clinical trial. Is your cough due to mets to your lungs, or something else?

Alwayshavehope, if you are out there I hope that your mother is doing ok. You haven't posted in awhile so I hope everything is ok.

Take care ladies,
Dawn

bangormom
Posts: 59
Joined: Dec 2008

Hi Dawn,

I'm glad that your fil is considering that trial, espeacily since they have such strict guidelines. I've heard from others that the side effects are really mild compared to the rest of the stuff that is out there, and that it shows a real promise of shrinking the tumors, that gets us a step closer to a cure. We can all pray.

We don't know whats causing my cough, there doesn't seem to be an infection, but boy is it annoying. I haven't started the afinitor yet, I will tomorrow, I am afraid of being allergic to it. My husband is home on friday, so that is when I'll start it, just afraid to he home alone and have a reaction to it, after the anafelactic shock I had with torisel, I know that the ems wouldn't get here in time and I don't want my kids coming home from school and finding me dead they would wined up in the funny farm if you know what I mean.

I too am worried about Always have hope, I pray that her and her mom are ok, it's never a good sighn when someone goes this long in not posting who regulary post. So Always have hope if you read this know that I am thinking about you and your mom.

Maryann

dawnmomofthree
Posts: 39
Joined: Mar 2009

Hi Maryann,

Just wanted to drop you a quick note to let you know that I am praying that you have a good outcome with the Afinitor. With a history of anaphalactic shock, I can't believe they even let you take it at home without direct medical supervision. Does your husband have an epinephrine shot to give you if you have a reaction to the Afinitor? Anyway, please be careful and know that I am certainly thinking good thoughts for you.

Let me know how it goes when you get a chance.

Take care,
Dawn

bangormom
Posts: 59
Joined: Dec 2008

Hi Dawn,

Thanks for your prayers and thoughts. I go into the doctors today and I will take it 1 hr, before I have my appointment, and that is a good idea, and epi pen, I am going to ask the doctor if I can have one. That was really good thanks so much, you and your family are in my prayers.

Maryann

dawnmomofthree
Posts: 39
Joined: Mar 2009

Hey Maryann,

Just wondering how you did taking the Afinitor yesterday??

Dawn

bangormom
Posts: 59
Joined: Dec 2008

Hi Dawn,

So far so good, I am afraid to jinx it though. I have had 2 full doses, and today will be my 3rd day. We here are all praying that it works. How's your fil? please keep me posted on him.

The side effects are kind of scary from what I've read so far, but I'm hoping that I don't have it so bad. We got out of the house yesterday and went to the flea market, didn't buy anything, but it was nice, the sad thing we found out how hard it is to push a wheel chair in gravel. I only had to use the chair for the second half of it, but I got out and that does improve one's mood.

The doctor seems to have forgotten what he told me. He told me to take it on tuesday and not on wensday or thursday, I told him I waited till friday because of my fear, and he said that he wanted me to take for 3 days to see how the se's and reaction went. But that is not what he told me. He seems to forget things, and I know it's not me because I still have a pretty good memory. This isn't the first time we have had this tho, he also brought up putting in the port again, he was talking about that a month ago, I think he has to many patients. He's the only onc in my insurance plan for this county, but he is a good doctor. Anyhow I have to get going got hungery and I have to eat while I'm hungery or it goes away then I wined up not eating. Talk to you later.

Maryann

dawnmomofthree
Posts: 39
Joined: Mar 2009

Hi Maryann,

I was so glad to hear from you today. I am so thankful for your guidance with respect to my fil and the PRCC diagnosis that I guess I have gotten kind of attached to you. I kept checking the site and hoping for you to say that you were doing ok! Anyway, I am so happy that so far you are doing ok on the Afinitor. It is also great that you were able to get out a little bit at the flea market. Living your life as much as possible is crucial--as I'm sure you have realized. What part of the country do you live in? Maine? Just guessing by your user name. I live in KY and we are getting a ton of rain right now. We always get a lot of rain in the spring.

My fil is feeling fine physically, but he is very frightened mentally (honestly, we all are very frightened). We are hopeful that he will get in the GSK clinical trial. This takes time though and all I can do is keep calling and praying that he gets in. He needs treatment. He is asymptomatatic right now, but in one months time, we were dismayed to learn that his tumors showed "noticeable growth."

Well I've got to get to bed and get some sleep or I'll never be able to take care of my kids tomorrow! Keep fighting and know that I am thinking and praying for good things for you.

Have a great week.
Dawn

P.S. Alwayshavehope, I hope that you are doing ok. What ever you are going through, Maryann and I are here for you.

bangormom
Posts: 59
Joined: Dec 2008

Hi Dawn,

Thank you so much for your kind words, they really mean a lot tome. And yes, we do get attached to those we 'talk' to online. I do look forward to reading your posts I to also wish we could hear from always have hope I pray she is ok.

I am actually in pennsylvania. I like 'talking' to you, being able to help someone is a good feeling, it helps me a lot. When your first dx'x with this you really don't know where to turn or who to talk to. It's very lonely, and the fear is overwhelming, I don't think you ever get over the fear, you just learn how to deal with it in a different way.

Noticeable growth is scary, I have been told that also, and this one lymph node in my neck is now visiable when I look in the mirror it is disturbing. But I am taking Afinitor, and today will be my forth day, so far not to bad but it is early yet. I am holding on to hope that maybe by the end of next week that noticeable node will start to shrink. But I know I have to balance it out with stable, it may not shrink but stable is better then growth.

Please know that I do understand your fil's and your fears, it's great that he is still feeling good physicaly that helps with the mental state. The wait to start the trial is nerve racking as I can understand, it's the same as waiting for insurance to cover the meds and then wondering what the copay will be. Waiting to start treatment is hard, we want to get going on it so we feel proactive. The sit and do nothing never feels right. How long did they say you would have to wait? What facility is he going to go to for this trial? I pray it's not much longer and God knows I hope and pray it works.

I have to get going the kids are leaving for school soon and I need to make sure they have every thing. (I usually check in here daily)

Maryann

dawnmomofthree
Posts: 39
Joined: Mar 2009

Hi Maryann,

Sorry I haven't posted in a day or two. We just found out today that my fil will not qualify for the GSK clinical trial for papillary RCC. His kidney function is just too poor. The hard part for me was that a month ago the kidney function was borderline and now it is worse. We now have to be really careful with all of his diagnostic tests too if they use contrast dye, etc. I just flipped out for about an hour today and I couldn't seem to figure out what to do. I felt such a sense of panic and I'm not even the patient! Anyway, after I ate a high fat lunch (I'm an emotional eater) I decided to research his other treatment options and just move forward. Have you had any problems with your kideny function? You are much younger than my fil so probably not.

I am so glad that the Afinitor is working out for you so far. I hope your week is going well. I need to run and get my daughter to gymnastics class. Sometimes just taking care of my kids and focusing on our numerous blessings is enough to improve my mood. I'll try to post a more positive note to you later.

Take care of yourself,
Dawn

bangormom
Posts: 59
Joined: Dec 2008

Hi Dawn,

I am so sorry to hear that he doesn't qualify for the trial, because that sounds so promissing. My kidney funtion has been good so far, but with these treatments no one knows how it will be months from now. I cried the whole day when I got turned down for it, it was quite a blow as I knew my options are running out.

Hey it's ok not to post, when I am not feeling to well I don't post either. Your daughter is in gymnastics? My daughter does them for cheerleading, tho I couldn't get her there last night my car is acting up and I am not up to getting stuck along side the road. Does your daughter do cheer too? Focusing on the kids is a good thing, it helps me a lot, tonight is my daughters induction into the national honor society, it's at 7:30 pm at the hs, and I have to stay awake for this, this is one of my dreams, and she worked so hard for it. I ablsolutly refuse to miss it no matter what comes up, I am going se and all.

I hope we hear from Always have hope, her mom wasn't doing to well the last post, I really pray everything is ok, so Always if you read this please update, we are here for you no matter what. Well I have to go now, kids gotta go to school. Talk to you all later, and try not to get depressed, it's hard I know, but there are other treatments and his journey has just begun.

Maryann

dawnmomofthree
Posts: 39
Joined: Mar 2009

Hi Maryann,

How are you doing this week? Still taking the Afinitor? Sorry I haven't posted in about a week. My husband got whooping cough and 2 of my 3 children even came down with it even though they have been immunized. No big problem for my son and husband, but my 2 year old was just too small to handle it. We ended up at the Children's Hospital here for her but she is doing much better now.

Anyway, my fil started treatment this last Friday. He decided to try a Phase I clinical trial that combines Sudent (sp?) and some other drug. It is a phase I, but several papillary patients have had good results. So far he is tolerating the drugs ok. We are still disappointed that he can't be in the GSK clinical trial but I am very encouraged that he is starting treatment for this.

My daughter is in tumbling and dance right now. She just had her dance recital last night. She wants to do the dance competition next year so we have try outs in a couple of weeks. She doesn't cheer yet, she is only 6, but that will probably start in a year or two. How old is your daughter? Also congrats to her on the induction into the National Honor society. You must be very proud.

Take care. I'll try to check in a little more this week.
Dawn

P.S. Hope you are doing ok Alwayshavehope.

bangormom
Posts: 59
Joined: Dec 2008

Hi Dawn,

It's nice to hear from you again, I have been so busy lately it wears me out. I am glad to hear your fil is getting treatment, the GSk is tough to get into I wanted to do it also.
Let me know how he is doing with it.

Dance competitions, wow at 6, I shouldn't be surprised, they do cheer hear at younger then that. Yes I am so proud of my daughter (Kat), lots of hard work. She's worried about cheer tryouts, they haven't even hired a coach yet, I'm not looking forward to it to much running around for me, I'll have to have help.

Whooping cough, I heard that it is going around that stinks that your family has it, I hope they get better soon. We also have to be concerned about the 'swine flu', the doctor wants me to stay home and avoid getting it, but with kids in school they can bring it home and we wont know it till they show sighns it'll stink if I get it.

So far the Afinitor side effects aren't too bad, not compared to sutent and nexavar, my blood work is a little off, and I am real tired but ok, I just hope it works for me.

Gotta go make sure my kids get off to school so I'll check back later this week.

Your family is in my prayers,

Maryann

dawnmomofthree
Posts: 39
Joined: Mar 2009

Hi Maryann,

I am so glad you are tolerating the Afinitor so far. I pray that it works for you. When will you find out if it is working?

We are over the worst of it with the whooping cough. I went out last week and bought a couple hundred dollars worth of groceries in preparation of the swine flu because I want to avoid that at all cost too if I can. It is funny though because I have used quite a bit of that food up so I guess I'll have to run out again when it comes to my area. You really need to do everything you can to avoid it, although I know with kids that will be difficult. Do you have help taking care of your kids, or are they old enough to care for themselves? My kids are 6, 4 and 2 so they still require a lot of hands on care.

My fil is still ok so far with this clinical trial. I am a little concerned that he isn't feeling worse. Do you think this means that the medication isn't working for him? On a positive note, the papillary listserv has been really active lately and it looks like there are more and more options for you and my fil.

Well I'm thinking about you and wishing you well. Enjoy the week.

Dawn

bangormom
Posts: 59
Joined: Dec 2008

just moving this over so its easer to read.

dawnmomofthree
Posts: 39
Joined: Mar 2009

Thanks Maryann,

I would have done this, but I didn't know how. I'm not very "tech savvy."

Dawn

bangormom
Posts: 59
Joined: Dec 2008

Hi Dawn,

Believe me, I am so far from 'tech savy' it's funny! I am glad to hear the whopping cough is almost done with for you. No I don't have help, they're to old, at home here they are 14and 16 the 22yr old is on her own. But Jimmy my 14 yr old is high functioning autistic he's pretty independent, but his motor clumsyness makes it so he needs a little help.

Don't worry that the meds aren't working because of lack of side effects, how long has he been on them? Sometimes it takes awhile for the se's to kick in. I have the same worry tho so I understand, today and yesterday the teeth have been hurting on the upper right side, it started with one then moved to another then back and forth, it hurts pretty bad, I don't know if it's the sinus or the teeth, I just know I can't afford a dentist right now, and I think if I have to go it'll put us behind in our bills which we just got caught up on. Oh well more tylenol and if it doesn't go away by tomarrow I'll have to do something about it.

I sighned up for both of the list, the kidney and papillary, lots of info on there, that is why I suggested it, I keep checking the clinical trials and see there are a couple just for papillary, and if the afinitor doesn't work then thats is when I'll go for one. We wont know for awhile, I had my last scan in jan/feb and I go for my next scan in late may or june, but I am going to a different hospital for it so it'll be a different radioligist reading and I was on nexavar for a breif time then the time lapse before the start of afinitor, so I am not to sure what info we will get from the new scans to help determin if it is working or not. Anyway it feels better to take 'something' then do nothing at all, so it'll be awhile before we know more like august or september.

Well got to get the kids out the door for school, chat with you soon and I am so happy that your fil is doing well, we'll keep praying for him.

Maryann

dawnmomofthree
Posts: 39
Joined: Mar 2009

Hey Maryann,

Just checking in to see how you are doing this week. How are things?

My fil is still feeling pretty good. Says he is a little tired, but he is still mowing the lawn and going to work and everything. He has been on the clinical trial now for about 2 weeks.

This is a busy week for me. Yesterday was my son's 5th birthday and tomorrow is my daughter's 7th birthday. They are growing up way too fast!

Have a good day. I'll check back in later.

Dawn

bangormom
Posts: 59
Joined: Dec 2008

Hi Dawn,

It's good to hear from you again, I am glad to hear that your fil is still feeling well. He sounds like a very strong man. If this trial includes sutent about weeks 3 or 4 is when my side effects kicked in, the high blood pressure, and the loss of taste. I didn't have the mouth sores or the hand and foot syndrome when I was on it and I hope your fil doesn't get those ones either.

I am doing ok, just can't get the weight up, and this cough has to stop it keeps me up at night now. I wont get a scan until the middle of june, and that probable wont show if this is working or not, because I couldn't get a scan at the beginning it would have been to close to the last one. If it's working it's be stable which is better then progression, so I'll take that.

Tell your kids I said happy birthday, my middle child's birthday is dec 5 to close to christmas. Your right you have a busy week. My daughter got a job at the pool at the park, she had another one, but he wasn't flexible enough for her to do cheer and band concerts so she had to turn that one down, and that one paid 3 dollars more than the pool. It's been a lesson for her as she now has learned that in life there are hard choices to make. My oldest daughter isn't talking to me right now, I couldn't give her money for her furniture so I guess I am being punished, oh well. I hope your mothersday was nice and maybe even restful. Mine was great. Will I have to wake these kids up for school now so I'll chat with you later.

Maryann

AlwaysHaveHope
Posts: 29
Joined: Jan 2009

Hi, you two.

I'm so sorry if I worried the both of you. I know I've not posted in a long time. I just sat here and caught up with reading your postings.

Its been really hard around here lately. Mom's basically given up (or it seems that way to me). Ever since her oncologist told her a couple of months ago that she was stage 4 and that the fluid buildup was due to cancer cells in her abdomen and that there was no since in scanning her again, and that there was no further treatment options for her...... she's basically been sitting in the chair in the living room ever since. She's having a really hard time breathing and her energy level is non-existant, so she basically has to sit in the living room in her chair all day. Dad has to lift her up out of the chair now, because she can't get up herself due to low energy. Mom just sits or lays there, watches the food network on t.v., and well, doesn't go outside anymore.

Then there was the couple of times within the last month that shes fallen. Her breathing is so hard and energy so low. The first time, she fell in the kitchen floor because she her feet were too heavy for her to lift due to fluid. The second time, she fell after walking back to bed in the middle of the night. It was really scary, because I woke up after 2 in the morning to mom's screaming. Of course, I couldn't lift her, but dad and I worked together. Don't know how we managed to get her back in bed that night. Lifting a person of the floor; its like dead weight. So, now after a couple of scares like that, it's become a realization that mom can't be left sitting at the house alone. Someone always has to be there with her, to make sure she doesn't fall, plus anytime she needs to excuse herself to the restroom, someone has to lift her up and help her there. It's really emotionally difficult when the day comes that you have to help your mom off a toilet. The past two weeks or so, her energy's gotten so poor that she's had to start using a toilet seat sitting next to her bed. (Sorry, I know that may not be exactly what you'll might like to hear).

Mom went to the hospital last week and got out a couple days later. She just couldn't breath. I find it getting harder and harder to not look at her and want to cry. I had one of those moments this evening when she yelled at me. She gets frustrated sometimes and ends up yelling at people around her, which then makes me frustrated. Every day I see a change in her, and it's not for the better. I just wish that by some miracle she could be the mom I used to remember, that cancer wasn't a part of our daily lives, and that she and I could go do things together again. But that's just wishful thinking and I'm making myself tear up now just typing these words.

Our neighbor is really great to us right now. She's what we call the cookie lady. She makes cookies a lot for us and brings them over. She actually made us a lasagne that we ate tonight. That really helps sometimes. I work all day and come home at night, wash dishes, fix dad and I dinner (mom doesn't hardley eat these days, although she's been into the Claussen dill pickles lately), and I run upstairs to my room for "me time". Nights are the only time that I can somewhat have a moment to breath and relax. I'm not complaining though, don't get me wrong. It actually has me worried lately and wondering if one day when mom's not here, will I regret having not spent more time with mom? I don't know, but sometimes I just have to be alone, or I think I'll go nuts...

My sister and I were talking on the phone the other day for over an hour (and cried), one of those days mom was in the hospital. We talked about our fears and everything else you worry about concerning mom's situation. She told me mom had talked about how she was worried about how I would be when she's gone, because I am so attached to her. I wished I didn't know that, now. It makes me upset and want to cry more. I seem to be more and more emotionally upset right now due to not only mom's health being worse, but because frankly I am mad and tired of talking about death and what to do if mom dies and so on....I shouldn't be faced with these situations this early in life.

Mom was told of a new drug out there for Kidney cancer that just came out, don't know what it was called, but she told them no, she didn't want to try it. The way she is so skinny/boney, and her current breathing problems and difficulties getting around, she just feels that it's not worth it. That last treatment really did the number on her and she's paying for it now. Though it saddens me, I can't disagree.

On a happier note, mom's 60th birthday was yesterday. I had to open her present from me and dad for her, but she was surprised and happy about what we gave her. She'd been wanting this chandelier light fixture which is big and matches the light fixture in the entry way, for the living room to replace our weird acting fan. So dad and I went in together and got the light for her.

Tomorrow's my nanny's 89th birthday and we're going to be celebrating it here at the house with everyone. Were going to order Extra Billy's barbeque and I'll be fixing macaroni and a vegetable platter. I'm not very good at this cooking thing, but I've been learning. Mom's been working really hard these past few weeks, when she's not in a hospital, and has been working on her new laptop to put a family cook book together. Last weekend, I actually got to do something I wanted to do for myself....I got to work in my garden, planted seeds and everything. It's supposed to rain here in VA the next couple of days, that means free water for my flowers.

Well,
Maryann, I'm so sorry you had to go off the Nexavar, but I could almost foresee it (the way mom had done so badly on it). That drug's a monster. Are things still going okay with the new drug your on? I'm glad to hear you can get out once and a while. Hope your family and you are doing okay. Let me know.

Dawn, I'm sorry your father-in-law couldn't have surgery, but glad he's trying that trial you were talking about with Maryann. Mom's case was/is like your FIL's, it has spread to her lymphnodes in her abdomen by the time they had discovered it and done surgery. That's what shes suffering from right now. I worry though, about how the cancer is just left there to spread where ever it wants to. Please give your FIL my best wishes and hopes for his health.

To both of you, I am very sorry for worrying you and hope to find you both in good will and health. Please respond, I promise to try to get back in the swing of regular posting with you two. I miss talking with you. (my own fault, I know) Talk with you later.

bangormom
Posts: 59
Joined: Dec 2008

Always have hope,

I am so sorry that your mom is in such bad shape that is what I was worried about, and don't worry about worrying us, you are going through the roughest of times and I certianly understand. I'm sure you know that your mom loves you deeply, even if she yells at times, I get that way once in a while, it's the frustration of not being able to do things and having to rely on others for help, and I think there's is a bit of depression mixed in because we know whats going on. It's good that you get some me time you need it, it wont do your mom any good if you burn out both physicaly and mentaly, so do what you need to do and don't feel guilty your mom I'm sure would not want that.

I'm not sure if I told you this before, but my mom died of lung cancer when I was 16, and my dad when I was 30, it's hard at both of those ages and it's not fair that you too have to go through this, I am so sorry for that I wish I could take your pain away, but as you know I can't. I hate what cancer does to people and families, I wish they could find a cure so no more have to go through this, but unfortunatly that day is a long way off, and I am afraid it wont come in our time.

It's a good thing that you got that light fixture she wanted that must have brought a bit of happieness for her and everytime she looks at it she'll feel happy even if it is a brief bit. That is so much more comforting for than you'll ever know, because it is the small things that I think helps us more.

I hate Nexavar, it was working for me, but the side effects made life not worth living, the new drug that her doctor was talking about is called Affinitor, and I am on it now, I am not sure if it is working, the side efects are cough, and tiredness, but very tolerable, I pray that it does what it is supposed to do, because the only other option for me is a clinical trial and I probably wont qualify for one any way so this is the last treatment for me. I am less active now then before, shortness of breath, and tiredness the doctor wants me to sit and eat and that is it, nothing more, my daughter had to plant my flowers for me because when I tried I got so tired that I thought I would pass out, it is really depressing not to be able to even sit and do that. I am not in the same shape as your mom, but I know I am not far off from it, everyone has noticed.

I am going to keep you and your family in my prayers, I wont tell you to think possitive because I know with what you are going through, you need to get through it, this is not ment as an insult what I am about to say, but you might want to see some sort of counselor to help you get through this time, my daughter has been going for months now, she still cries from time to time, but I think it really has helped her. Please hang in there. That old frase God dosn't give you more then you can handle is true, but I still wonder about that. I am going to keep my eyes on this thread, and I want to give you my personal email address: jwagnerjr@rcn.com Please email me I'll give you my phone # if you do, I have unlimited long distance, and I would like to help you in anyway that I can. Please know that I am here for you. I have to go now, but I hope to talk to you soon.

Maryann

dawnmomofthree
Posts: 39
Joined: Mar 2009

Hi Alwayshavehope and Maryann,

It is so good to hear from you Alwayshavehope! I am deeply saddened for your mom and your family that things are so tough for her right now. Don't worry about us, take care of yourself and your mom.

Along these lines, have you guys thought about respite home care for her? My Grandpa is suffering from endstage alzheimers and my Dad and my Aunt stay with him most of the week. But then once a week they have a health aid come in and stay with him to give everyone a break. This is expensive, but worth every penny for my Dad. Also, I think sometimes insurance may pay for some of this. I only mention this because I think a lot of times everyone focuses on the patient and forgets about taking care of the caregivers! It is mentally and physically exhausting caring for someone with a major illness around the clock. You and your Dad must take care of yourselves and give yourselves a break now and then or you will be useless to your mom. Besides, it would be nice to just spend some quality time with your mom when you are refreshed and someone else can focus on the "care" aspect for a little while. Just know that I am praying and thinking good thoughts for you and your family. I hope at least that your mom can enjoy life a little more in these coming weeks. I am sure she doesn't mean to yell at you, it must be so frustrating for her to feel so bad and to feel helpless and like she has to depend on everyone.

Maryann I am hoping that the Afinitor will at least stop your cancer from progressing. I am encouraged for you that so far you have been able to tolerate the drug. I had no idea that you lost both your parents to cancer. That is unbelievable and I almost have to wonder if there must be some sort of genetic link? You are a lot stronger than I could ever hope to be.

My fil is finally having some side effects from his treatment. He has lost his appetite and is exhausted. Worst of all for him is that he has these sores in his mouth. He is handling this much better than I expected though. He says he expected the side effects and is just going to take it a week at a time. He has been very lucky in his life. He is 70 years old and this is his first major illness so I didn't think he would be able to handle the discomforts of cancer treatment. So far he has surprised me with his strength and determination to get through this.

Well I'll check in later. I've got to get the kids to a birthday party. If either of you need me, my email address is: dawnlanders700@hotmail.com. I am always here for both of you to listen and help in whatever way that I can.

Take care,
Dawn

bangormom
Posts: 59
Joined: Dec 2008

Hi Dawn and Always have hope,

I don't know how I missed this post, but I read both of your emails, I was really happy to get them it made my day so thank you very much. I think we have the longest thread here, I am so glad that we have our little group here. I'll be sending those pics hopefully soon.

Thanks again and have a great day and weekend.

Maryann

dawnmomofthree
Posts: 39
Joined: Mar 2009

Hi Maryann and Carrie (Always have hope),

How are both of you this week? Carrie how is your mom doing? I had a great weekend but it was nice to get the kids back to school this morning. I am going to have to develop some sort of schedule for them over the summer or I will lose my mind. ;) My fil is still struggling with the mouth sores, but other than that he is doing pretty well so far.

Have a good week ladies. Maryann I can't wait to see your pics.

Dawn

bangormom
Posts: 59
Joined: Dec 2008

Hi Ladies,

I had my port put in on tuesday, and boy do I have pain! The cough that I have from the Afinitor makes the pain so much worse, I haven't gotten a real good sleep in 2 days now and it is making me cranky, I don't like that. We have had icky weather up here, and I am still trying to get my daughter to make some time for those pic's I want to send, she'll get to it. Her cheer tryouts will be held the last week of school and they don't even have a coach, what a year for cheer this will be.

Oh, before I forget, on tuesday 2hrs after I was discharged I had a dr's appointment I gained 3lbs! For me thats great news, he says he thinks I am doing pretty good, but no treatment for this cough that is driving me over the bend. All the doctors keep telling me that I have try all the over the counter stuff first, well that can get expensive, but it is what I am going to have to do I guess, one day I'll find something that works.

Dawn, has your father in law tried Biotene mouthwash and toothpaste for the mouth sore's, it has worked for me, if he has and it doesn't work there is a perscription the doctor can writte for something called mirical mouthwash, I haven't used it, but others have and they say it works. You might even be able to find a home made version on line. Well I have to go and get some ice for my shoulder, hopefuly I can get those pic's out this week.

Maryann

dawnmomofthree
Posts: 39
Joined: Mar 2009

Hey Maryann,

How are you doing? Is the pain any better? Maybe you should see a special lung doctor and try to get this cough resolved. Anyway, I hope you are feeling better by now. I laughed and laughed at your delight in gaining 3 pounds. I wish that it was difficult for me to gain weight. Unfortunately, I could gain 3 pounds in about an hour if I wanted to. ;)

My fil is now off the clinical trial he was in. It was a combo trial of Sutent (sp) and some other experimental drug that starts with an A. I can't keep all the names of his drugs straight, especially since sometimes they use brand names, sometimes generic. Anyhoo, the experimental drug is causing a dangerous clotting disorder in about 30% of the patients so the FDA stopped the study. The good news is that my fil was not one of the patients that suffered from this clotting disorder. The bad news is that now he is taking Sutent only and that is not experimental so it may prove to be very expensive for him if his insurance does not cover it. I don't know if it will work for him anyway. He has his next scans scheduled for July 10. Also, Maryann thanks for the information about the medication for the mouth sores. I will pass this on to my fil and hopefully he can feel better.

Alwayshavehope how is your mom doing? How is your garden doing? I hope this message finds you well. Feel free to email me directly if you need anything (you too Maryann).

Take care ladies. I have to get my daughter to gymnastics and my son to baseball practice.

Dawn

AlwaysHaveHope
Posts: 29
Joined: Jan 2009

Hi Dawn and Maryann:

How are you two doing? Finally got some time to get on here and take a look at the postings. Was home sick yesterday and again today. Got some sort of cold/flu thing going on. Feel better today than yesterday, at least. Went to the doctor and he prescribed something for me to take for my remaining sore throat and sinus headache. Think I caught it up at the hospital on Sunday.

Anyways, how are you doing Maryann? I hope that your pain from the port has gone away now. Hope it will be benefical to you. That cough must really be bothersome, too. You've been experiencing one for a long time now, haven't you. I was so glad to hear you'd gained weight. That's something to be happy about, right now, isn't it. I tell you, I really enjoyed being able to email you and Dawn. It allows me to talk about other things and allows me to send pics to you'll if I want to.

Dawn, how are you doing? Sorry to hear that your FIL won't be doing the clinical trial anymore, but sounds like someone was on top of their game when they realized that it causes blood clotting. Believe me, that's a serious thing when you start talking about blood clots. Scares you a lot. Sorry he's experiencing the mouth sores. I'd never heard of that mouthwash that Maryann suggested before. Sounds like a good idea to try. I'll have to remember it if mom gets her mouth sores again.

Well, as for here, mom's been in the hospital since Thursday night and is supposed to be coming home tomorrow. I'm not sure how to feel right now, to be honest. Mom's been miserable the past week or so, throwing up and etc... Dad had mom escorted in an ambulance to the hospital Thursday night and she was admitted. Apparently, mom's kidney function was so low (not doing good), her potasium levels were dangerously high, and she was dehydrated (other than the fact she had a hard time breathing). Friday, they were going to give her a drug to lower her potasium levels and if it didn't work they'd have to do surgery to open her kidney up, etc. So, I took Friday off and sat up at the hosptial with mom. She was so miserable that day. The drug they gave her, (to put it in a kind way...)basically made her use the bathroom all day; that's the only way you can get the potasium levels to lower, apparently. But it worked, so thankfully she didn't have to have any surgery (I don't think her body would've been able to take that anyways). Then on Saturday, she was much better, some of her color came back, her potasium levels returned to normal, her kidney function was better and weird enough, her tongue sores went away. She's been taking fluids all weekend due to the dehydration. I guess not eating anything will contribute to that. It also appears that she's been taking too much Levenox (blood thinner). The Levenox has been making her blood too thin and causing blood to pool up in small places underneath the skin on her arms and then those places end up opening up and bleeding. So somethings going to have to change with that. They're also giving her meds to help with digesting (keeping food down) and steroids for weight gain. Mom also went ahead and made the decision to have hospice care. So they will be coming once or twice a week now to the house checking on her. Also, a man just delivered a hospital bed to the house a second ago and set it up in the living room downstairs. Mom said she just couldn't go back to the way things were....having to wake people up at night for basic needs and laying in her bedroom all day with no one there and having nothing but four walls to look at. She says, at least now she'll be able to be downstairs and can look out the windows into the front yard and so on.... It's so sad to see it come to this, though.

Well, to talk about something a little more cheerful-my garden you asked? My garden is doing great. In fact, I'm going to try to go outside and water them today. I planted carrot seeds a week ago and haven't seen anything come up yet. The ground is so dry and it's like in the 80s right now. I planted wave petunias several weeks ago in the garden and small plants have come up in that exact area, but I haven't quite determined yet as to whether or not they're actually wave petunias or if they're clematis seedlings from the clematis vines that are planted near by. So I'm waiting for them to grow, so I can determine. Friday, my sister and I are going to the bridal store; provided I feel better by then. She had alterations done to her wedding dress that she'll get to inspect and I finally found a bridesmaid dress, but it needs a tailor's touch.

Well ladies, I hope to talk with you soon. Look out for an email soon, as well. I'm going to try to send more pics, if you'll two like. I'm hoping to see some of those pics you mentioned Maryann. Don't worry, I know your daughter will get around to it soon. Well, talk to you'll later. Have a great rest of the week, okay.

bangormom
Posts: 59
Joined: Dec 2008

Hi Everyone,

Sorry for not answering sooner, but this is my 3rd day in the hospital, It seems I was the proud winner of an all expense paid trip to st.lukes in bethelhem pa. I have a lymphnode blocking my left lower lung from getting any fluids that it developes out, so now I have pneumonia,I know that is spelled wrong sorry. Hence all of my coughing I been doing for a month. I hate it when you tell a doctor something and they treat it as tho you have no clue what is going on, I have been telling him for so long about this cough I don't even remember how long and now I am stuck in the hospital. I can't stand hospitals, tho this one in nicer then temple university in phillie. I might get to go home today at noon, God I am praying so hard for that.

Always have hope, I am so sorry that your mom had such a rough week, sounds like she is/was worse then me. Hospice, it doesn't always mean a death sentence, and being in the living room will be better for her in so many ways, she'll be a part of everyday life, wich is so much better then being stuck in a room away from people, I know I spend way to many days alone, you get to the point that your want to give up. I pray that she does better and feels better everyday. I am keeping her in my thoughts and prayers as well as you and your dad. Let me know if there is anything I can do for you or your mom.

Dawn, I'm sorry also that your fil had to stop the trial, but like always have hope said, at least they discoverd it before he was made sicker then need be, and sometimes things work in ways that we don't understand and that is usualy for our best. I forgot what you said if anything he is going to try next, please forgive me for that, I am sorry, the biotene mouth wash and toothpaste you can find at cvs, walmart, riteaid, just about anywhere, I do hope his mouth sores aren't too bad. When I get home I am going to reread both your post and always have hopes post. I keep feeling as tho I missed something important, I don't like that feeling and I don't want to lose my two freinds here buy saying some thing wrong because I miss read or missed a line. I seem to be 'foggy'.

Well, I am going to sit here and wait to be discharged, doc says not before noon, I say asap!

I am praying for the both of you's.

Maryann

Maryann

donna_lee's picture
donna_lee
Posts: 388
Joined: Feb 2009

I just took the time to start at the beginning and read your stories/posts. What a series of journeys you are going thru and my regrets and regards to all. My posts are under donna_lee and right now I've had a "good news" result from my most recent CT.

But I wanted to find out about Afinitor, since my brother (a professor of Veterinary Radiology) had sent an article after the FDA approved it. Maryann, it seems to be effective for you at this time. I'm so sorry you had to go thru the other meds with such bad results. And Maryann, Happy Birthday in March. Let's be around for 2010!!!
Carrie -I'm glad you have Hospice involved. I took Hospice Volunteer training 2 years ago and really feel they have a lot to offer. The one I work with is not-for-profit and they have counseling available for family members, too. A little over a year ago, they started a Palliative Care service. That was what I was offered by the Dr.'s at my Dx.
Dawn-How hard to be in the "sandwich" of kids of your own and dealing with fil.

My kids are 43 with 9 & 13 year olds; and 38 with 2 & 4 year olds and I've been dealing with my cancer since this time 3 years ago. I try to put myself in their position, especially this past winter when my internist changed my anti-depressant and the new one made me really depressed and gain 20 lbs. I've been back on Paxil since 2/10-memorable day in my life- and the depression has lifted and I've lost the 20#.

Summer plans, besides pulling weeds in my gardens, include serving on Federal District Court Jury Duty out of Eugene, OR (I'm in Oregon); and taking the 13 year old on a "road trip". When we talked about it the other night, he couldn't come up with anything specific he wanted to do or see, so I said, "Maybe we should just put a map on the wall and throw a dart." The 9 year old said, "What if you hit Maine?" He knows his geography, but think I'll come up with a couple of fun itineraries to choose from that are a little closer to home.

My best to "The Three Musketeers."
Donna

AlwaysHaveHope
Posts: 29
Joined: Jan 2009

Hi Donna,
Welcome aboard, so to speak. You seem to have been dealing with this cancer for a while now. What kind of treatment are you on right now, if any?

I'm sorry, however, that yet another person in this world of ours has to experience this type of cancer (any cancer for that matter). I'm glad to hear you have gotten some type of good news on a recent scan. I bet you were over joyed.

You said you work with hospice? Are they really as helpful as everyone says? Mom just came home from the hosptial today, so I don't know what day they'll start coming by, yet. Not looking forward to any of this. A bit depressing if I think about it all at once.

It sounds like you are going to have fun on that trip you are planning (did you say that's with your grandkids?). It's great that you can get out and do that. Wish my mom and I could go do something like that again. She and I went on a trip with my at the time college art club to New York City four or five years ago. It was the best time of my life. Mom was just talking about it Sunday in the hospital and how she enjoyed it so much. It will always be a part of our memories though, I guess.

So, you like to garden, too. I've got a small vegetable garden (really small) going right now, as well as a flower garden behind the garage in the backyard and in front of the shed.

Well, this post sounds like I'm jumping around a lot with my words/thoughts. Sorry about that. Anyways, it's nice to hear from you and I welcome you to become a regular poster with me, Maryann, and Dawn. Hope to hear from you again.

Oh yeah, I about flipped over the "three musketeers" thing. Never thought about us that way, but I think I like that nickname. It's kind of neat.

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