Papillary Renal Cell Carcinoma- Anyone Experiencing This or is a Survivor?
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.
Comments
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Papillary type 2
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 20 -
Your situation sounds so much like my mom's....bangormom said:Papillary type 2
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
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.0 -
Hi Always have hope,AlwaysHaveHope said:Your situation sounds so much like my mom's....
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.
I'm
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,
Maryann0 -
HiAlwaysHaveHope said:Your situation sounds so much like my mom's....
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.
It's me again, I'm just
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.
Maryann0 -
Hi, It's good hearing back from you....bangormom said:Hi
It's me again, I'm just
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
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.0 -
Hi again,AlwaysHaveHope said:Hi, It's good hearing back from you....
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.
I've noticed it
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,
Maryann0 -
Hibangormom said:Hi again,
I've noticed it
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
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.0 -
Hi,AlwaysHaveHope said:Hi
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.
Well, I started Nexavar
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.
Maryann0 -
Hello Ladiesbangormom said:Hi,
Well, I started Nexavar
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
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.
Dawn0 -
Hi Dawn,dawnmomofthree said:Hello Ladies
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
Have you checked
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,
Maryann0 -
Thanks for the info
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.
Dawn0 -
Sorry to hear about your father-in-law's recent diagnosis...dawnmomofthree said:Thanks for the info
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
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.0 -
Hi, Maryann....bangormom said:Hi,
Well, I started Nexavar
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
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.0 -
Hi Always have hope,AlwaysHaveHope said:Hi, Maryann....
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.
I am so
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.0 -
Hi Dawn,dawnmomofthree said:Thanks for the info
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
It sounds like your
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.
Maryann0 -
More Testsbangormom said:Hi Dawn,
It sounds like your
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
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,
Dawn0 -
Hi Dawn,dawnmomofthree said:More Tests
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
It sounds as if you
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,
Maryann0 -
Thanksbangormom said:Hi Dawn,
It sounds as if you
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
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?
Dawn0 -
Hi Dawn,dawnmomofthree said:Thanks
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
You are quite
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,
Maryann0 -
Hope for a Clinical Trialbangormom said:Hi Dawn,
You are quite
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
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.
Dawn0
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