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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.

dawnmomofthree
Posts: 39
Joined: Mar 2009

Hi Donna,

Welcome to our thread. As Carrie said, I'm really sorry that you have to be here, but it is encouraging to me to see a 3 year survivor. My fil is only a year and a half into it and when they diagnosed him as a Stage IV this last January, his prognosis was very poor. So far though, he is feeling pretty good. What treatment (if any) are you pursuing right now? Are you going to try the Afinitor like Maryann?

Your road trip sounds great! I wish I could take one this year. My husband and I elected not to take a big family vacation so that we can watch our finances and be there for my fil who is actually 5 hours away in northern Ohio (I'm in Kentucky). All my kids want to do anyway is go to the pool. LOL.

Have a great week.

The "third" musketeer, ;)
Dawn

AlwaysHaveHope
Posts: 29
Joined: Jan 2009

Well, now wonder you've been coughing. You've been coughing more than a month, though, Maryann, I don't know if you've realized or not. If you look back at some of our older postings, you can see where you've mentioned the cough way over a month ago. I know what you mean about what you said about telling a doctor about something and they somehow don't really seem to be listening. It's kind of like they're ignoring you or ignoring the health problems that are really bothersome to you and then later down the line, it progresses and finally it's like, "oh, we really should have paid more attention to what she was saying".

Anyways, did you get home from the hospital yet. I hope so. I know what you mean by hospitals not being your favorite place. They're good places because they help people get better, but stay more than a day in one and it's like cabin fever. It is nice when the hospital seems nicer inside than others you've previously visited. The one mom was just in, is one of three hospitals that are the closest to us. This one in paticular really needs a renovation, but luckily mom got to stay in the new cancer hospital that they just finished building onto the back on this hospital. It's so much better inside than the rest of the main hospital it's attached to. Well anyways, I'm sorry that you had to be back in the hospital. I hope that you will soon be feeling better and won't have any more complications with that lymphnode or anymore caughing or pneumonia. Otherwise, though, is the Afinitor still doing okay with you? Hope so.

Hope to hear back from you and Dawn soon. Oh yeah, and check out the new poster who just joined in on our posting. Well, talk with you later. Have a good night.

Carrie

bangormom
Posts: 59
Joined: Dec 2008

Hi Everyone!

God is great! I am finaly home. As nice as the hospital and staff were to me, it's like the old saying say's 'there's no place like home!'. Yes, I do remember this cough being around quite awhile, it just got real bad last week the night of my last surgery, and on monday when I went to my regular doctor's appointment I was so upset, I told him: "you have to do something about this cough, I can't sleep eat or anything, and I feel weak and tired all the time." I must have hit a nerve, because the ball really started to roll, I knew I would be going in to get a blood transfusion because the shots I have been getting were not working, so he orderd the transfusion, a blood culture, a dry ct and chest exray. I went straight to the hospital from his office, thank God that my husband was with me, he had to drive me I was so tired that I couldn't drive myself.

There's no sighn of infection, white count is within normal limits, they even checked my urin for infection of the lungs, I never knew they could do that. But they said even tho they can't find it, it is definatly there, the port was a god send, as they used it for IV's and blood draws that really spared me alot of pain.

As far as the Atinitor goes, I have to have scans sent from one hospital to the other, and I think it's going to be a pain in the butt. Thats when I'll find out if it's working or not. I tend to think it's not working I will be disapointed if it isn't. We as in the doctor have to figure a new treatment plan, or if there will be one or not.

Donna, what about Afinitor do you want to know? I'll do my best to answer, it's not bad, it does have side effects tho, like it will mess with blood counts, and tiredness, some slight mouth sores that aren't bad. And coughing, which can become serious my left lung is swollen. Let me know if you need more info, I'll try to help if I can.

Well got to go I have to see about getting those records transferd.

Maryann

dawnmomofthree
Posts: 39
Joined: Mar 2009

Hi Maryann,

I am so sorry that you were hospitalized, but let me tell you I am glad they finally figured out the cough. As Carrie mentioned, you have been complaining about the cough for a long long time, and I knew something wasn't right. It is a shame that patients have to complain so much before things can get resolved! I have often had to call on behalf of my fil 3 or 4 times before I can get questions answered and issues resolved. Persistence is key. The doctors are just too busy I guess.

I pray that the Afinitor is working for you. If not, hopefully you can figure something else out. My fil is still taking the Sudent, but he will have scans in July to see if it is helping or not. Since they removed him from that drug that was causing blood clotting disorders in other patients, his side effects have diminished. It makes sense I guess, since he is only on 1 drug instead of 2. You have had a lot of trouble with most of these drugs. Were you allergic to Sudent? If the Sudent isn't working, I'd like to get him on Torisel or even Afinitor, like you.

Hey Carrie, I am so sorry that your mom is still having such a rough time of it. I wish she wasn't to the point where you guys have to receive hospice services, however, I am glad that she can get the care that she needs. Hopefully you and your dad can take care of yourselves too. This has got to be a nightmare for all of you. Be sure to post when you can and let me know how your mom is doing. In the meantime, I'll send you my prayers.

Take care ladies. I'm going to be out of town most of this week, but I'll try to check back in before I go.

Dawn

bangormom
Posts: 59
Joined: Dec 2008

Hi Dawn, Carrie, Donna,

Well, I had to stop the antibiotics, they were making me so sick, I couldn't keep anything down, and the heart burn was horrible. I'll have to bug my doctor today or whoever is on call and let them know I can't take those antibiotics, I know you need to take the full course but the se's were just to much. I threw up 4x's yesterday and once already today, but I don't feel as bad as yesterday, thank God.

It's my oppinion that the Afinitor is not working as that lymphnode has increased enough to cause problems, I pray I am wrong about this it's like a gut feeling I have (no scientific bases for this) and the way the doctor's were all concerned. My doctor thinks some of what I was hospitalized for was partly a side effect of the afinitor.

No, I wasn't allergic to sutent, it just didn't work for me, however I was allergic to torisel. Sutent has seen alot of success for a rather large number of people, just not for me. It did give me high blood pressure, and took away my taste buds, the only thing I could taste was sweet stuff.

As far as hospice goes I am so sorry that your mom has gotten to that point, I have heard of people going into hospice and they did get some better that they felt they could try more treatments, I pray that's the case for your mom, if it's her decision to not go through anymore I do understand, I felt like that last night you get tired of being sick and tired, it is wearing on one's mind. I have heard so many possitive things about hospice those people are truely amazing.

well it's sunday and the sun is shinning, it looks like a beautiful day! I want to sit outside today and enjoy it if I can. I'll let you all know what we come up with on tuesday when I see my doctor (wether I continue with afinitor, or we go onto something else or no treatment at all) for now I'm gonna make a cup of tea and watch the birds, that seems to be a new intrest I have lol! Well, I'll continue to pray for you all, and please pray for me, your freindship means alot to me, if I don't responed in a timely manner it's because I am sick, so by for now.

Maryann

AlwaysHaveHope
Posts: 29
Joined: Jan 2009

I am so grief stricken right now, it is hard to think and hard to type these words.

My mom passed away Friday, June 5 around 2:30 in the morning.

Thursday I was home sick trying to get over my cold. I ended up going in to work for four hours anyway, though. When I got off work and went home, I fixed supper and cleaned up dishes afterward. As I was cleaning up dishes, my sister had come over for a few minutes and ended up coming into the kitchen and asking me how much of the morphine pill my dad had given my mom. I said "none, that I knew of" and asked her why she was asking. She had told me mom wasn't making any sense. My sister left shortly afterward and when I got done with dishes, I went into the living room where mom was.

My mom just wasn't acting right. She started saying to my dad, "lift the bed up", "no I want down", "no that's not right", "put another pillow under my head", "lift me up"....she kept on and on, didn't know what she wanted, couldn't get comfortable. She kept fidgiting with her hands and the bed sheet and her eyes were rolling back and forth.... Then she said to my dad, "I'm scared" and "Jerry, don't leave me" and kept repeating "God, help me", and that's when I knew something wasn't right, I just had this feeling. I layed on the sofa behind her and eventually moved to a chair in front of her where I could sit and watch her and dad sat in the rocking chair beside her, trying to calm her down, holding her hand. A couple of hours later she had somewhat calmed down and dad and I just sat there in the living room with her until 10:00 at night. He went and took a shower, while I sat there with her, and then he came back down and decided to lay there on the sofa all night with her and I went upstairs to sleep.

Dad had waken up on the sofa that morning around 2:00 and went to check on her. She wasn't moving and didn't have a heart beat, and then he had to close her eyes for her. I sit here thinking now, how incredibly hard that must have been for him to have to see that and that image will be stuck in his memory forever.

On Friday, at 4:00 a.m., dad came into my bedroom, told me to turn on a light and sat on the bed beside me. I knew right then what he was about to say. The phone rang before he could speak. He had to give directions to the hospice nurse who would be coming by. Then dad told me and my world had suddenly ended. I cried so hard, we held each other, and dad told me to stay in my room, that he didn't want me to see her like that, to wait until they came and got her. I layed there and listened and heard the sound of the gurney as it took my mom's body away. I'll never forget that sound. Dad came up into my room afterwards and sat with me again and we cried and then he sat there with me as he called my sister's house. "Something" he said "that I never thought I'd have to do, tell my two kids that their mother was gone."

Up until today, Friday was the hardest and longest day of my life. You find out your mom's passed away and before you know it, you're running off to a cemetary and a funeral home the same day, making the arrangements. Picking out a casket was the hardest part of that experience, I cried, I guess because that's the first step that starts to make it all sink in. Even with that said, today is probably going to be the second hardest and sadest day of my life. This evening we're having the "viewing" from 2-5 p.m. and tomorrow is the graveside (funeral) at 10:00 a.m.

I'm about to go sit down now and pick out some pictures that I'd like to put in the casket with mom tonight. Thankfully, mom had written down some of her wishes a few days before she died. So, I know she wants our family photo sitting near her casket and she wants her last photo she had done for us sitting out near her register book tonight. Last Sunday, she was able to tell me, she wanted purple flowers and she wanted to be wearing the dress that she was going to wear to my sister's wedding.

I am so shaky right now, I guess because I want tonight to be over. I want to say my goodbyes, but I'm not looking forward to seeing her laying there.

I am so thankful though, that we have had a lot of people these past two days that have been so nice and supportive. Can't get over the food thing, though.....It's a little overwhelming.

Well, I am sorry to not ask how all of you are doing and I am sorry, I have to be giving you this bad news, but I am so sad and filled with too many thoughts and emotions right now. To all of you, if anyone is interested, my mom's obituary (her name is Carol Ester) can be viewed online through the website for the Richmond Times Dispatch, for Richmond, VA. AND they have a memorium/guest signin book attached to her obituary as well, where visitors can sign their names and any thoughts they'd like to leave.

For now, thanks for everyone's support over the past year as my mom fought so hard. I will post sometime later this week, perhaps. You are all in my prayers. Thanks.

dawnmomofthree
Posts: 39
Joined: Mar 2009

Hi Carrie,

I am so sorry to hear about the loss of your mom. I can hardly type this my heart is just breaking for you. I am thinking about you and your family and please know that you are in my prayers right now. I wish that I lived closer so that I could just come over and give you a hug. Please don't feel like you have to respond to this post until you are ready. Take care of yourself and your family. I'm sending you an email too just in case you are not checking posts.

Hugs,
Dawn

bangormom
Posts: 59
Joined: Dec 2008

Carrie,

I am so sorry to see your post, I am sorry that your mom passed. I to wish I lived closer so I could be there for you and your family, I am praying for you that God will bring you comfort and strength in this time. I know that words don't or can't heal your pain, if you need anything please don't hesitate to ask, know that I am here for you when you are ready to join us again. Please take care of yourself, and know that I care deeply for you.

In prayer,

Maryann

dawnmomofthree
Posts: 39
Joined: Mar 2009

Carrie,

I know this will be a hard day for you as you lay your mom to rest. I am sending you love and strength for both you and your family. Yesterday when I looked at your mom's obituary, I was struck by how much you look like your mom. Cherish your memories with her and remember she lives on in you.

Please email me if there is anything I can do to help you.

Hugs,
Dawn

donna_lee's picture
donna_lee
Posts: 399
Joined: Feb 2009

Dear Carrie,
How sad you must feel. My eyes are watery just thinking about what you must be going thru. If there is anything you can get out of this is that you and your dad got to spend some of the most precious and important time with your mom. You were truly "there" for her. Not everyone in a family is able to or wants to be there at the closing of a life.

Does the Hospice you worked with offer Grief counseling for the survivors? This can be extremely valuable for you, Dad, sister and the rest of the family there.
South Coast Hospice, the one I "champion" offers 13 months. We are across the USA, and each hospice functions under similar rules and regulations, but offer slightly different services. Go to www.schospice.org to see what this one offers; and they just put out their Winter 2009 Newsletter under publications.

Cry when you need to, laugh at the funny stuff and don't let anyone tell you how you should feel. I'm here. dlgould@wildblue.net
Donna

AlwaysHaveHope
Posts: 29
Joined: Jan 2009

Hi everyone...

How's everyone doing? I thank each and everyone of you for being there for me. Your support is incredible.

I've been very busy this past week. I took all of last week off, because I knew there'd be a lot to take care of. I am a little better now that we have gotten through the most difficult moments of this experience. There's going to be a lot of changes around here, besides the obvious...not having my mom around anymore. We've been sitting down... my sister, dad, and me, coming up with some creative ways of reducing the cost of bills, etc. to make it financially easier for us. It's bad that you have to start thinking about such things, immediately after loosing someone you loved so much. But we're going to be okay.

The past few days I've been cleaning out my mom's room. I hated doing this so early, but dad just couldn't walk into her room and deal with seeing her clothes hanging there anymore. So, unfortunately, I had to start cleaning her room out. Seems kind of rushed to me, though. That was one of those crying moments for me....because it was hard stuffing her clothes into bags to go to the Good Will, but I saved some of her shirts that she used to wear a lot; one's I can still picture in my memory of her wearing and each time I saw a shirt or blouse my mom used to wear a lot, it made me cry. But I got through it and it got a little easier as I got close to being done. We gave her bedroom furniture to my sister, which we helped take over to her house; her 6 year old is going to use it in his room now. Mom's room is all empty now, except for some of her belongings I still have to go through, which I shoved into the closet when we moved out the furniture. I'm going to go through that stuff later, at a slower pace; my own pace.

I washed all the woodwork this weekend in mom's room and dad cleaned the carpet. We're planning on using mom's room as an office/art & craft room. Mom wanted it that way. She had told my dad and my aunt, apparently...that she wanted me to clear out the room when she was gone and be able to use it for a room to do my art in. It feels kind of strange though, to be getting rid of all her things in that room, eventhough I am keeping a few of her things that remind me the most of her. I always had this idea of one day making a family quilt using clothes and fabric that belonged to different people in the family, don't know if I'll ever do it, though (but if so, I hope to use some of mom's clothes). To be honest, things seem to be going a little fast, but I guess in a way it is better to clean her room out now, then to be like one of those people who keep a loved ones room the way they left it after they die; untouched. That sort of thing, just causes one's grief and sorrow to linger on and on.

It's odd, I guess because I've stayed so busy and all since mom passed, in the back of my mind....it's like I still haven't grasped the reality that she is actually gone. It just happened so fast; so early. I don't think any of us really thought it would be this early on that we'd lose her. But in a small way, it's like everyone keeps saying...at least she's not suffering anymore. But unfortunately, that phrase doesn't help much.

I went back to work today and eventhough a part of me didn't want to return to work, I know it is what I needed. The people I work with are so supportive and are like a second family. I think it is going to help, having something else to concentrate on.

Well, Maryann, Dawn, and Donna....thanks for listening and providing words of support during this time. Maryann, I hope that you are doing okay. Are you still taking Afinitor or did you have to quit it? Dawn, I hope that your FIL is doing good. And Donna, I hope, too, that you are doing alright. I also hope to get back to regular posting with you'll three. Well, I'll talk with everyone later. Have a nice evening.
Carrie

dawnmomofthree
Posts: 39
Joined: Mar 2009

Hello Ladies,

Well I have been out of the box this last week. I took the kids up to northern Ohio to visit my sister and my neices. Between the two of us we have 6 kids, all ages 7 and under, so it proved to be a lively visit. After that, the day after I got home my in-laws came for a 4 day visit. My fil is looking and feeling great. I am happy that he is feeling good, but kind of nervous that his therapy may not be helping since he really looks and feels good. He is taking Sudent only, now that the clinical trial he was on was stopped due to safety concerns. He has abdominal scans scheduled for July 10. We will know more after that I guess.

Carrie how have you been? You have been in my thoughts frequently this past week. I kept wondering how you and your family were holding up. It looks like you are doing pretty good so far. How is it going back to work? I think its fine to clean out your mom's room when you and your dad deem it appropriate. My younger brother died when I was 16 (he was 9 at the time) and my mom kept his room a shrine for over a year. It was very painful when she finally went through everything--even after a year--so I say do what works for you to make things as easy on you as you can. As you pointed out, your mom would want it that way anyway.

Maryann, I hope you are doing ok. I have been really worried about you. How are your lungs? Any more news on how the Afinitor is working out? I hope you managed to stay out of the hospital last week!

Hey Donna, how are you? I hope all is well.

Well I need to get my kids bathed. We spent the day at the pool and I am exhausted. Post when you can ladies. I am thinking of all of you!

Dawn

donna_lee's picture
donna_lee
Posts: 399
Joined: Feb 2009

To Carrie-my sentiments are as Dawn expressed above. I seem to be the responsible and local resident clean up hitter in both my and my husbands family. I've been thru it with my fil, his mother, my dad and then my mom. Even when my mom-in-law moved to an independent and assisted living unit, I got to clean up her house and left overs before the sale.
How is work going. I'm so glad you a job to return to with the economy the way it is.
To Maryann- I'm sure those teens are keeping you hopping. Is your energy level staying up? I had enquired about Afinitor, mostly because I want knowledge. At this time, all my Drs. say if surgery can be used, that's the best treatment for me. Only if it spreads and is inoperable will they suggest "chemo"/drug therapy.
TO Dawn- Sounds like you had a wild ride and vacation with little people. So glad you can get together with family.

We had most of us here over the weekend. Oldest granddaughter was 5 on the 16th, but they had her party at the beach on Sunday afternoon with some of her friends from pre-school plus family. My daughter and her boys came down from Portland and we had a short but nice visit from Sat-Mon morn.
On Monday morning Chelsea's Mom said to her, "your birthday is tomorrow." The almost 3 year old said, "My birthday's next." She got mixed up with the party being 2 days early.

The road trip with my 13 year old grandson will be in mid to late July. I gave him a couple of alternate itineraries and he picked the one that goes to the fossil beds and paleontology center. Hot and dry-100 degree desert, watch out for rattle snakes.

We've got some BBQ/party invitations coming up next. On 6/27 is the local Relay For Life. For a small town, last year ours raised about $115,000. I'm going for the box lunch and kick-off ceremonies, plus walk for our team during the first 1/2 hour. Our team is called "Been There, Done That" and we all are part of the Cancer Survivors Support Group that meets weekly. Almost all have had some form of cancer, or were the caregiver when a spouse or family member was dealing with treatment.
Later that afternoon, we going to an outdoor party; and on the 4th we going to a friends cabin in the mountains for their annual get-together.

Did you see that corey50 had a great report on her CT?

Keep the good news coming
Donna

bangormom
Posts: 59
Joined: Dec 2008

Just bumping to see if I can move this thread over. Yeah it worked.

AlwaysHaveHope
Posts: 29
Joined: Jan 2009

Hey, everyone. How are you all doing? Great I hope.

I am so tired right now, so I'm going to try to keep this one short for right now.

This weekend has been busy. Comcast came yesterday and spent a couple hours getting us set up, then I went to Office Max for a new desk chair (gave mine to dad for his new desk), and spent over two hours at the grocery store, and came back home and made pizza.

Today, was a great day. Today, me and dad, my sister, her fiance', and my nephew all met up with my dad's sister and her daughters (my cousins are older than me) and their family for a cook out at Holiday Lake State Park in Appomatox County. It's basically this big freshwater lake in the middle of a park in the mountains where you can go boatpaddling, fishing, swimming, diving, and so on. I had no idea I was going to get wet today! I luckily brought a pair of shorts and old shirt that I changed into when we got there. The younger kids and my future brother-in-law and one of my cousins went into the water. I was just going to wade into the water, but they had swimsuits on and well I got splashed with water and then nocked into the water, and well, I gave up and ended up spending over 3 hours with them in the 4 ft. water, swimming and splashing around. It was fun, actually. I wish mom could have been there to enjoy it with us, though. We haven't seen dad's family in a long time; most of my cousins' children have grown so much, we didn't recognize them. Plus, we got to meet my cousin's two twin adopted children that we've never gotten a chance to meet before (dad and his sister have had a rocky relatiionship over the years, so we're trying to re-establish some family ties). When mom got sick and had her surgery back over a year ago, dad's sister reached out to us and has been visiting with us ever since, and today was the first time in several years that we got to see dad's side of the family.

Got so much more to do around here. My next task, for this week, is to try and work on putting family pictures in the frames that mom wanted me to help her with and get hung on the wall. We never got around to it, and well, now I feel like it is something that I must do; that I owe it to her and to myself (one of my regrets is that I never got around to helping her with this). As far as our current situation is, I think we are doing okay for right now. I think dad is bored lately, because I often retreat to my bedroom at night leaving him down stairs on weeknights, but I'm going to try and be better about that. And as for me, well, I think I'm doing okay, I seem to be handling things better than I ever imagined I would in a time like this. I like to think it's just my way of inheriting my mom's strong will (she was a very strong and determined woman). I have my moments though, like...when I walk down the hallway at night and walk past mom's use-to-be bedroom...I get scared sometimes because all I can picture are moments when I used to lay beside her and scratch her back or lay and talk with her, especially there at the end. But on a better side, I've also been having these moments lately where I'll be doing something around the house either the right/or wrong way and I stop and imagine what she would have said to me at that moment, and for a few minutes it feels like she is here with me. And I welcome some of these moments, because not having the difficult moments or not trying to remember, would make me feel like I'm doing my mom's memory an injustice.

Oh yeah, thanks for asking about how work was. Most people there are really nice and were so supportive, so going back did help to a certain degree...I'm not going to say much about work other than that though; some things that were raised to attention in a staff meeting last week have raised my temper level really high and well, I don't want to re-kindle that fire, right now.

Well, here I am rambling on about myself and my own life, what about you all? How are all of you doing?

Donna, it sounds like you are going to have fun in July. How are you doing? Okay I hope.
Maryann, haven't heard much from you lately. I hope everything is going better for you. Hope your lungs are feeling better and the lympnode isn't giving you anymore problems. Did you go off the Afinitor?
Dawn, I'm glad to hear that your fil is feeling okay. I know what you mean about not knowing what to feel about him feeling good while taking the treatment pill he is on. You can't ever tell much from that though; some people react differently than others to treatments, whatever form of treatment it may be. His cancer could be getting smaller and he's just not feeling any distinct side effects. You just don't know. Time and scans will show. But remain hopeful, no matter what.

Well, this "short" posting, got really long. Oh well. Anyways, I'm sunburned all over my face and my legs are tired from swimming/wading in water so, I'm going to go now, seeing how it's after midnight anyways and I'll catch up some more with you all later this week. I might send you'll some pictures from today, if I get to it. Bye.

Noranv
Posts: 2
Joined: Jun 2009

I had surgery to remove my left kidney on 5/19/09. The original diagnosis was clear cell renal carcinoma, however, the pathology report showed I have 3rd stage papillary renal cell carcinoma.

My condolences to you and your mother for what you are going through. I am a survivor of Ovarian Cancer (1983-1984 two surgeries and a year of chemotherapy) so I know a small part of what your mother is going through. I've been told by both my oncologist and my surgeon that neither chemotherapy nor radiation are effective against papillary kidney cancer and, frankly, was somewhat relieved at that news because, despite my love for and the devotion of my children, I'd rather not feel obligated to go through chemotherapy again.

One thing I have decided is that I am NOT going to allow this disease to ruin the life I have remaining. I'm going to experience and enjoy each day as it comes and I look forward to becoming a great grandmother for the first time around Christmas.

You are in my thoughts and prayers. I believe that cancer is harder on the family and friends than on the cancer patient because they want so very much to help and feel powerless.
Bless your heart.

donna_lee's picture
donna_lee
Posts: 399
Joined: Feb 2009

Don't we wish we could close membership in this club?
Hey, Carrie. It sounds like you had a blast and for a while forgot what happened the past few months. That is great.
And you don't have to always keep your dad company. He needs to work thru things, too. He's just lucky you still live at home and are around part of the time.
Just thought I'd share that your mom will have a luminaria (bag with sand and a candle) lit in her memory at 10 pm PDT on Saturday night, the 27th during our Relay For Life Celebration.

My hubby was home most of the weekend. They have had a job out of town that took 2.5 hours one way to drive, so almost all had taken camp trailers to stay on site, or gotten a motel room 20 miles away. I guess he brought me his "father's day present"...the camp trailer that needs to be cleaned out after 2 guys batched in it since the first of June.

Last night, our son, his wife and girls came up. We had a tea party with many tiny cups of water served by the 5 yr old hostess along with the cake d-i-l made. The almost 3 yr old set the table.

Have a good week, y'all.
Donna

AlwaysHaveHope
Posts: 29
Joined: Jan 2009

Donna,
It sounds like you had some fun, too. What a nice "father's day present". You must have had a few laughs with the tea party and grandchildren. I bet that was a cute thing to see. I can remember doing the same thing when I was little.

Anyways, how are you doing? I hope you're doing good.

Thanks for the candle lighting in mom's memory coming up this Saturday. That means a great deal to me. Thank you so much. I'll try to remember Saturday at 10 to take a moment. I've heard about Relay for Life a lot in the past. What are they about, what do they do, exactly? I think our's here was sometime last month, not sure though.

Have you heard anything from Maryann? I'm kind of wondering, because I don't think I've heard from her lately.

Well, I've been thinking about you all and have a special place in my heart for each of you...Maryann, Dawn, and Donna. Hope to hear from you all soon. Talk with you later.

AlwaysHaveHope
Posts: 29
Joined: Jan 2009

Hi,
Nice to meet you, Noranv. Sorry it has to be under these circumstances though.

That is so odd that your surgeon and oncologist told you that chemo and radiation are not effective against PRCC. I know radiation really isn't, but chemo...several people who are suffering from PRCC take or try chemo. As to whether anyone's really had a success with it, is another story, I guess, but for a doctor to come out and say flat right out that those aren't worth trying seems a bit strange to me.

But, either way, I support your choice to not go through chemo again. It's a monster, as I've said in one of my earlier posts. When my mom had made that decision to not take chemo anymore, that was a difficult thing to hear, but I supported her decision because I knew how hard that choice was for her and because I saw everyday what her last chemo had done to her. It must have been hard for your family to deal with that, but I bet they are supportive of you, also. But, anyways, I'd like you to know that I support your decision and think it is admirable to want to spend the rest of your life the way you'd like to; to enjoy things and do things that you want to do and in the way you want to do them.

What else that seems odd to me, and I've said it before, is that I've seen on this website and through these posts right here, that people who get PRCC or RCC, seem to have one thing in common. A lot of the women who get it, have started out with some form of female related cancer beforehand. I still wonder to this day, if the two are somehow related. But who knows.

Well, I hope you are doing okay right now. Please feel free to chat with us once in a while, I'm sure the others would welcome you, as I do. Have a nice evening.

Carrie

dawnmomofthree
Posts: 39
Joined: Mar 2009

Hello Ladies,

Hi Carrie, Donna, Maryann and hello and welcome Noranv. I was thinking summer would be more relaxed for me, but my kids have even more activities than usual right now and every day they want to go to the pool! I wouldn't mind the pool so much, but my 2 year old is a real handful and then after I chase her around I am frantically scanning the waterpark for my older children, hoping they haven't managed to drown themselves. Donna, I am sure you can relate to this with your 3 year old grandchild! LOL.

I had to go to urgent care this morning for myself. Its not serious, just a real irritating problem. I woke up and my eye had this rash all around it and it itched like you wouldn't believe. Somehow, I have managed to get poison ivy all around and in my left eye. Now I am taking oral steriods so it will go away and they told me I may gain weight. Just what I need! Anyway, its irritating, but certainly small potatoes compared to what all of you are going through.

My fil is still feeling good. My husband is going up to Youngstown in a week to stay with him for a few days and go with him for his July scans. Carrie, I am glad you slowly getting back into your life and healing a little bit. Donna, I am glad you are living up the summer with those grandchildren. Noranv, I think your dr is right, traditional chemo usually doesn't work for papillary renal cancer. Nonetheless, there still are a lot of treatment options and medications, that, while not chemo, may shrink and slow your tumor. My fil is currently taking Sudent and many people have had good luck with a drug called Torisel. Keep us posted and keep it up with your fantastic attitude! Maryann, my precious friend--how are you?? I know you have had a very rough time of it lately. I hope you feel well enough to post soon. Until then, we miss you and are praying for you.

Have a good week ladies,
Dawn

imbkuz
Posts: 52
Joined: Apr 2009

I've read all the posts the other day and felt so compelled that I just couldn't put it down. My heart goes out to all. My hubby has renal cell carcinoma stage IV so wasn't quite in the loop with the papillary but in retrospect we are all united.I am recovering from cataract surgery so left eye blurry but I just had to write. I know Donna lee (Hi) hope all is well. i know Maryann who helped me a lot (she is my godsend) and am very concerned since you haven't posted lately.It's hard to describe but besides worrying and tormenting about your loved ones who are sick,then you get attached and worry about your fellow cancer friends. And Carrie, I never had the honor to chat with you but my heart goes out to you and aches. I have a son who I worry about because he is taking his dads illness very hard and also is trying to help in his own way. Your mom and family must have been/be very proud of you. You seem like an amazing young lady.I hope this message finds you doing as well as can be expected. I am so sorry for your loss. And to everyone else on this site God Bless and I am praying. Please don't feel slighted if I didn't mention everyone by name since it's hard for me to see right now but I didn't want to waste another day or excuse not to write. You all touched me.
Always
imbkuz

AlwaysHaveHope
Posts: 29
Joined: Jan 2009

Hi, nice to meet you. I know it must have taken you a while to read our posts, we've been going at it for a while, since the end of last year, I think. I find myself writing on this site more often now. Thank you for your concern and kind words.

Your husband is going through this? I'm so sorry and I really mean that, because no one should ever have to experience this type of cancer, any cancer for that matter. My mom was stage 4, too. I know what your son is feeling like right now. Your heart aches because you don't know exactly what to do, but all you know is you want to do something. You want to do something to help the one who's suffering and you realize one day that there really isn't anything you can do, except to be there for them, spend time with them, get them whatever they want, talk with them, cry or laugh with them when they need it, and let them know everyday how much you love them. I think what made things a little less painful or little easier to get through it, was that I made sure I was there for everything. Of course there, were really painful moments, like when you watch them geting sick or where they get to the point they can't eat, but there's also the better moments when you realize that for some reason someone's giving you extra special moments with that loved one, that will give you memories to last forever, like for me it was laying beside my mom at night and just talking, about anything and everything.

How about you? How are you dealing with things right now? Please remember that it's okay to take a moment for yourself once in a while. I know it can get stressful or depressing at times and you just feel like you need to get away for a minute and it's okay to do so.

Well, anyways, I've got so much to do today, it's not even funny. I want to clean mom's closet out; it's the last of her bedroom stuff, and I'm planning on going by my nanny's house to visit (that's my mom's mom), oh yeah, and lots of clothes to wash, oh boy. I'm also hoping to get these photos sorted out for those picture frames to hang, still haven't gotten to it yet. Well, I've got to go. Hope to hear from you again, please feel free to post with us.

Maryann, I'm getting really worried. Please email me or post, or something. This isn't like you.
Dawn and Donna, I hope to hear from you soon. Hope you two are doing good.

imbkuz
Posts: 52
Joined: Apr 2009

Wow who's the mother here! I don't know how old you are but you seem wise beyond your years. If I had a daughter I would want her to be just like you sparing the pain of course. But I guess that unfortunately made you who you are today. I'm so impressed. I feel all those feelings and then some. No one should have to go through this and I have been there before with other family members and myself.(I'm not well and that's another story).I know they say to take some time out for yourself. I've been hearing that for many years. Easier said then done but thank you for the advice. I find it hard to look at my hubby sometimes.He doesn't look the same and it hurts to see him like this.It's so hard to watch someone you love go through this. He always was very macho and my rock. He started his meds about two weeks ago and yesterday was the first day that he really didn't feel well.I can't even imagine what's going on in his mind since he's not much of a talker.I'm just so scared how am I going to take care of him and everything else when some days are difficult for myself but people just expect it from me. Hopefully today will be a better day. It sounded like you had a full day of plans yesterday. I hope you accomplished what you wanted. How is your mom's mother handling this? Your dad and sister doing?
I could only hope that my son meets someone half as special as you someday. Unfortunately he's having a hard time relating to other people lately (as I myself am) since their lives are so different.Most people his age don't understand and seem too busy enjoying life. My heart is breaking for him as well. Enough of my rambling. I hope this is somewhat coherent since I've been up a good portion of the night. I wish I could hold you and give you a great big hug.
I hope we hear from Maryann soon.
God Bless
With All My Heart
Imbkuz

AlwaysHaveHope
Posts: 29
Joined: Jan 2009

Hi,
As far as Maryann goes, Dawn emailed me last night concerned about her as well. She told me Maryann hadn't been doing too good. I hope she is alright. I'm really concerned and worried about her. Dawn was asking me if I had a phone number for her, but I don't, unfortunately.

I know what you mean by not really getting a chance to take time for yourself; you're so busy caring for your loved one and then, you don't want to be away from them too long for fear of not being there. Your worries about how your going to take care of your hubby and be able to cope at the same time, are real and I felt the same way and so did dad, when we were taking care of mom. She didn't become real ill until a few months ago, when she decided to take Torisel (chemo) a second time. She was hoping taking it a second time but taking it for a longer period of time would help her, but instead it killed her. When she was taking that, she really changed. She didn't look the same, threw up a lot, and couldn't eat, which caused her to be really thin. It was so bad at times, I couldn't stand to watch it and yet somehow you make it through it, I guess because you just have to, because you love them so much and know they'd be there for you if it was you going through it. Of course, there were times when I felt I would scream out or wanted to just cry all day because it was so hard and stressful, but I saved those moments for when I was alone in my car or in bed at night. Mom had gotten to a point were she was so depressed because she knew somehow she didn't have much time left and I didn't want to upset her further by crying, so I stood strong, never let anyone see me cry, and perhaps that was the wrong thing to do, but like you said...people almost expect it of you. I feel for your son, because I know he's having a really hard time right now and I can relate to the not being able to relate to other people right now. It's a hard thing to go through; it's like your life/world is falling apart and no one around you except those going through it, understands.

Thanks for asking about my family. My nanny (mom's mom) seems to be handling it okay; better than I thought she would. I visited her yesterday and took some Arby's to her and we sat and ate lunch together. She said, "just like old times". Mom and I used to go over there, before she was diagnosed, and took Arby's all the time and ate with her. She misses it I guess. As far as dad, well, I'm not so sure. At times it's like we're doing okay, and other times it's like it just hits you that mom's not there and I can see dad just sitting there with that look on his face. He said he went to the cemetary the other day and regretted it, because it was too early for him to. I understand. I went a few weeks ago and cried so hard. It's just going to take time.

Well, how are you doing? Okay I hope. I rambled on so much, I didn't even ask. I hope you are maintaining. Remember there's going to be bad days and then there will be really good days; days that seem almost normal. The key is to really be thankful for the good days, because they're precious.

Well, lots to do today, too. Groceries and well, my great aunt is in town from Arizona and is coming by to visit today.

Talk with you later,
Carrie

dawnmomofthree
Posts: 39
Joined: Mar 2009

Hello Everyone,

I hope all of you are doing good. I have just been feeling so down today. As Carrie posted above, we haven't been able to get in contact with Maryann and I am so very worried about her. Maryann, if you are out there, we are all praying and hoping that you are doing ok. We miss you very much.

Carrie, thanks for responding to my emails. You are handling yourself so well in this time after your mom's passing that I am just amazed. I'm sure your mom is so proud, but not at all surprised at how well you are handling this. Your post above, about your mom taking the Torisel, scares me to death. My fil will probably take that one next. I pray that he will not have such a severe reaction to it and that it will help. Right now its just one day at a time and we won't have any more news on how my fil's cancer is doing until after his scans on July 10.

Everyone else out there, best wishes to all of you. I hope this message finds everyone doing well. I need to go play with my kids and focus on something positive. Take care ladies.

Dawn

imbkuz
Posts: 52
Joined: Apr 2009

I too am in awe of Carrie. As a matter of fact in all you ladies. I was honored to read all your posts.Dawn what a wonderful daughter-in-law to be so involved with your father-in-law.Just remember everyone reacts differently to the medications so one day at a time.
We all just have to pray that they work. My hubby's on Sutent. Still on his first cycle. So I am praying that his tumors in his lungs shrinks.
Right now I am truly concerned about Maryann. She was so kind and an inspiration to me. Please keep me posted and tell her she is in my prayers. Hope to talk soon.
Babs

donna_lee's picture
donna_lee
Posts: 399
Joined: Feb 2009

Hello to all-
I had a busy week/weekend. Our office doesn't have much landscaping because it is an equipment repair and truck shop along with the office, but I haven't been able to do anything the previous three years. So after a morning of paperwork, I'd put on my work clothes and tackle the overgrown shrubs, weeds, and accumulated dirt and grit. I ended up with pitch in my hair from leaning over the pine tree and dirt in my eyes, ears and nose. The next two days I pulled my hair back thru the adjustable strap in the baseball cap. I have one more afternoon of that kind of work.

Saturday was Dave's and my 45th anniversary. We got married after our Jr. year in college, but we both finished school.
From 11-2:30, I was involved with the ACS Relay for Life. Box lunch, entertainment, kick-off ceremony, survivors' lap, plus walking the track for the next half hour. Some stayed all night, but we had a picnic to attend so went out to it until nearly 6. By the time we'd eaten a late BBQ and all the other pot-luck stuff supplied by about 60-70 guests, Dave and I just went home and watched TV for an hour and then crashed.

On Sunday, I made my husband take me out to breakfast at Mom's- a little diner with about 6 tiny tables and a counter. Then we went home and worked in our own yard. I finally have my pond and waterfall so I can go buy some goldfish. No fancy Koi for me, since the rac****s will eat them anyway.

Today was cancer support group. So far, turn in of $$ for all the relay teams was at $85K, with more to be turned in before the first of August. I guess the Oregon Coast wind really got strong and cold after I left Saturday. Glad I missed it.

I almost feel guilty when I say I feel well...but not totally. There've been enough times when the news was bad. So I'm sure you'll forgive me a little. Everyone, hang in there.
Donna

corey50
Posts: 73
Joined: Feb 2009

hey donna,
don't you dare feel guilty. you deserve and have earned all the good times and good health coming your way.
thanks for the update on your weekend.
it's so funny you have a breakfast place called MOM'S we have one called DAD'S.
friday night after supper my husband and i went to get an ice cream and watched a thunder/lightning storm come in over the ocean. he sat outside, i sat in the car. don't like lightning.
on sat. yard work for the guys/ housework for the girls. shower, rest then a graduation party for a friends daughter.
sunday. the weather broke a little here in the northeast so my hubby and i (the kids didn;t want to come) went to stroll a local art show and sit out in the sun for a few minutes enjoying the ocean.
supper around 5pm. then church 8pm mass.
home, tv, fall asleep.
yesterday was my daughter's 15th birthday. so lovely.
had a nice day. lunch out, walked around the shops, movie, dinner out. home for cake, ice cream and a new movie she got as a present.
my daughter's like me, we like to go out to eat for our birthdays, the guys like me to cook for them.
have a great week. the sun is shining. yeah.

dawnmomofthree
Posts: 39
Joined: Mar 2009

Hello everyone,

I wanted to give everyone an update on Maryann. Her daughter sent me an email. Maryann is back in the hospital and having difficulty breathing. The cancer has spread to her lungs. She is fighting but we all need to pray for her and send good thoughts her way. Maryann has been such a source of support and kindness for all of us on this thread. I am hoping and praying that she will be back with us posting messages very soon.

Dawn

imbkuz
Posts: 52
Joined: Apr 2009

Thank you so much for the update. It was bittersweet. I am having a really difficult time the last few days and as I write this I'm crying. Maryann was one of the first people to help me.I've also missed her on the kidney cancer forum. She's always been in my heart. This just made things worse hearing about her. She is my hero and a wonderful lady. I hope this passes quickly and she will be on the road to recovery shortly.Is there anyway I can let her know she's in my prayers? I miss her.
Thanks Dawn. I hope all is well with you and your family.
Always
Babs

dawnmomofthree
Posts: 39
Joined: Mar 2009

Hi Babs,

Yes I feel the same way that you do about Maryann. If you look at many of the threads on this kidney cancer site, it is amazing how many times Maryann has posted and offered kind words and support for so many of us. She is a very dear friend. If you email me, I'll see what I can do about getting you her contact information. Her daughter is passing on cards and email messages of support to the hospital where she is staying right now. My email is: dawnlanders700@hotmail.com

Take care,
Dawn

imbkuz
Posts: 52
Joined: Apr 2009

Dawn Thank you so much for being so helpful and hope this weekend is full of pleasure for you,Carrie hope you have as nice a weekend as possible if feasible, Donna lee you go girl and everyone else I hope you all have a nice holiday weekend. I know Maryann will be in our thoughts and prayers.Again, I stupidly made plans and life happened so my weekend... well we will see. Prayers for family would be great.Thanks everyone.
Always

dawnmomofthree
Posts: 39
Joined: Mar 2009

Hi Everyone,

I have some fantastic news. Maryann's daughter emailed me and said that Maryann is being released from the hospital today. All of your prayers and well wishes must have helped. Hopefully Maryann herself will be posting a message soon.

Imbukuz, I hope you are ok. I am certainly sending prayers for you and your family, whatever is going on I hope that you have a good 4th of July with your family.

Carrie and Donna I can't wait to hear all about your 4th of July weekends. I hope you both live it up.

I took the kids to the zoo today. It was very crowded and I am exhausted now, but I think they had a fantastic time.

Have a great holiday everyone.
Dawn

donna_lee's picture
donna_lee
Posts: 399
Joined: Feb 2009

Just to let you know I went the direct route to Maryann. Somewhere in the past few months she gave out her email address and I sent a contact telling her we missed her. Also commented that if the family was reading it, to please let us know. Sounds like it may have worked. I'm so glad to finally hear about her. I had even scrolled back and seen that she hadn't communicated since early June.
Bangormom has been a true inspiration and voice of encouragement.

Does anyone else receive "Cure" magazine, which is free to cancer "people." Mine just came yesterday and there is an article on Kidney cancer and treatment(s). I just started reading the article, so can't share much yet. I'll start a new post to let others out there know about the mag and other info available. The mags have been in my oncologists and the radiologists offices and subscriptions are free.

This morning, I took my husband to a town about 1/2 hr. away that has one of the restored, quaint little shopping districts. Found all sorts of stuff. Books for the granddaughters, a new door buzzer in an art gallery, 2 blouses for me, salt-water taffy, a ceramic frog plaque for hubby's collection (we both liked the vivid colors), locally made jellies and salad dressings, and a necklace with amber beads that goes with one of the blouses. Then we went to Bandon Dunes for lunch. Google Bandon Dunes and you'll see some gorgeous golf courses.

Happy Fourth!!! It's a R/W/and not so blue day for us.
Donna

dawnmomofthree
Posts: 39
Joined: Mar 2009

Hello Ladies,

Happy 4th of July to everyone! Just wanted to report that I spoke with Maryann briefly on the phone. She is home from the hospital and has been through an ordeal, but thankfully now she is home again with her family. Hopefully she will post on this thread in the next couple of days when she is feeling a little better.

Donna I checked out the Bandon Dunes golf course that you ate lunch at. What a beautiful area of the country that you live in! I would love to live near the coast someday. It sounds like you are having a great weekend. You certainly have earned it. :) I would be interested in getting a copy of the kidney cancer article from "Cure" magazine. I don't receive that, but I am fortunate enough not to be a "cancer person" and only a caregiver. My fil has his next set of scans next week so I assume we may have to change his treatment or make some additonal decisions. I'd like to be up to speed on what is out there for him in way of possible options.

Happy 4th everyone,
Dawn

AlwaysHaveHope
Posts: 29
Joined: Jan 2009

Happy 4th everyone!

I am so glad to hear that Maryann was up to talking with you a little, Dawn. Thanks for giving me her address so I could send the letter and thanks for keeping me updated via email. We are all such good friends and Maryann, as you have said, has been such a great source of support, so I am so thankful that she is at least home now with her family and not in the hospital anymore. Dawn... I hope your father-in-law's scans offer good news this coming up week. Donna...I hope you are doing okay, too, and hope your weekend is enjoyable. Maryann...please take your time getting back with us; I think we all understand if you can't post for a while and we are all just happy to have you back.

As for this weekend and how it's going.....
Had a great time last night. Went with my sister, her fiance', and my nephew to her fiance's brother's new townhouse in another county. We stayed until 10:00 p.m. We fixed his wiring on his big screen (projector that projects image on his wall), took a tour of his townhouse, grilled hotdogs and marshmellows, then watched part of one movie and part of another on his big screen on the wall. We were going to stay and watch fireworks at 10:00, but my nephew was getting tired (way past his bedtime), so we all left. Got home about an hour later. It was fun. I enjoyed myself for a change. Felt kind of bad leaving dad at home alone by himself, though.

Haven't really done anything today that's worth mentioning, except I've been washing clothes and working on getting these photos ready for one of those frames that my mom had wanted me to help her with for such a long time and I never got around to doing. Hope my mom's up there somewhere looking down on me, happy to see me getting them done. 0:) Well, I tried to watch a movie downstairs with dad for a change, but he fell asleep shortly after starting it, so I came back upstairs to my room and I guess I'll watch some of the Boston POPS on t.v. tonight by myself. Oh well, at least I tried.

Well, everyone have a great rest of your holiday and I'll talk with you all later.

imbkuz
Posts: 52
Joined: Apr 2009

I too am sooooo glad Maryann is out of the hospital and can't wait until she is back. Is it at all possible to have her start a part 2 of these posts since it takes me almost a half hour to scroll down:) Just a suggestion. Dawn, again thank you for the wonderful news! I hope we always keep in touch. If anyone ever told me that I'd be meeting people this way I would have never believed them. It's unfortunate circumstances but I have met the most wonderful caring people. Not like the real world whatever that may be:) Life certainly has changed since my husband's diagnosis and you find out who truly cares or not. You guys rock.Dawn,Thank you for your prayers the other day...we had a really nice day yesterday....normal whatever that means. It was wonderful and I relished every second.I really do believe in the power of prayer. Look at our Maryann. I hope everything goes well with your fil this week...keep us posted. I think it's amazing that he still mows the lawn. My hubby tried and boom he was down for the count but he did BBQ last night. Carrie I'm so happy that you enjoyed yourself the other night and with your dad I can't imagine the pain that he he is going through too.Please when you go up to your room don't feel alone I'm sure your mom is watching over you and we will always be here for you too. I don't know what I will do when I lose my husband.Although I can't think about it. One thing I have learned from this experience is that while we are making plans life happens and when I worry or think about something happening something else happens.
Donna lee keep us posted on all your adventures......sounds like you're living it up and it's beautiful there. Yesterday I gardened a little (whatever my body allowed me with my physical limitations) and it was so nice and relaxing to get back to nature.My husband goes for CT scan in about three weeks so maybe we'll have some good news. He's only on his first round of Sutent so maybe it's too soon. But I do believe in miracles.
Hope everyone will and is having an enjoyable as possible holiday weekend.

imbkuz
Posts: 52
Joined: Apr 2009

http://www.curetoday.com/index.cfm/fuseaction/article.show/id/2/article_id/1131 I hope this link works for the article. Cancer patients can get magazine for free. I signed up for hubby.Hope this helps.
Always
Babs

AlwaysHaveHope
Posts: 29
Joined: Jan 2009

Okay everyone,
With Babs recent suggestion, I've gone ahead and created a Part 2 Discussion Post.
It's under the same place (Kidney Cancer) and all you have to do is look for the post titled, "Papillary Renal Cell Carcinoma-Anyone Experiencing This, Is a Survivor?-PART 2, STILL GOING STRONG".

Let me know if anyone can't find it, but it's at the top of the Kidney Cancer posts, so you can't miss it.

Talk with you'll later (under the new post).

Carrie

PamelaFischer
Posts: 1
Joined: Sep 2010

You guys know exactly what i feel. My dad has been fighting this horrible cancer for almost 2yrs now. He has just recently been taken off the last trial approved for him, and medications he was on. Doctors are telling us he only has 2mths if that,unless something soon starts up for him. My dad is in horrible pain and is now just taking high doses of pain medication that make him over drowsy and unable to do much of anything. My family is hurting so bad..at this point im so heartbroken and angry that my dad is dying and nothing or nobody can help us.I love him so much and im just so scared.Its hard having so many people around and nobody seems to realize they cant cure him. He has his up and down days. Today was hard on him. I wish i could give him his life back just for one day completely without the words (Papillary) RENAL CELL CANCER. I needed to let you Know i am praying hard for you all. Today is a rough day. I want our lives back..i want my dad back to who he was! I signed up to this paticular site just to let you and your mom know, although i dont know you,and you dont know me, our lives have been impacted the same way. I AM PRAYING HARD FOR YOU! Hold your mom close. and i will hold my dad. We can only pray to see the end one day of this horrible cancer,RCC. You are in my thoughts deeply..

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