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Papillary Renal Cell Carcinoma- Anyone Experiencing This, Is A Survivor? PART 2 - STILL GOING STRONG

AlwaysHaveHope
Posts: 29
Joined: Jan 2009

Since my original post entitled Papillary Renal Cell Carcinoma- Anyone Experiencing This or Is A Survivor? has become quite lengthy with over 89 posts on it, with the suggestion of a few of my fellow posting friends, I've decided to start a Part 2 so that we may more easily read our posts.

Today is the 1 month aniversary of having lost my mom. I've watched my mom battle her cancer for the past year and a half and tried to always be there for her, and as I have recently lost my mom, I feel even more of a need to keep on posting. I have corresponded with several people who I now consider to be good friends, who have offered me an incredible amount of support and strength and for who I am so grateful.

So, everyone....Maryann, Dawn, Donna, Babs, and everyone else.....Please keep on posting.

Carrie

ruthelizabeth
Posts: 146
Joined: May 2009

Hi! I've just been skimming thru and thought I'd add a note. My husband is on Afinitor; it's his fourth week. Had his right kidney removed three years ago. A year later they began testing to see if they could find a nodule in his lungs that was big enough to biopsy. A year of tests later they found it in his lungs and the lymph nodes in his chest. He started on Sutent. At that point we discovered that our oncologist was ummmmmmmm someone we needed to run away from. (Anytime you make an emergency night call to a dr., get a 4-word answer and are disconnected from and can't reach again, you realize you've got a problem. When the dr. can't remember the incident four days later, you run out the door.) We're with a good man now, connected to the Moffett Institute, very good with patients and meds.

Sutent gave us lots of side effects and wasn't effective. Torisel seemed to do a good job; we heard that it had cut his cancer back 50% in late April after 4 months on it. However, it's come roaring back. Lumps everywhere. Somehow actually seeing them is scary.

Tolerating the Afinitor fairly well so far. Is now on Atavan because he's started to have trouble sleeping. Losing weight.

He has a good attitude. Very positive and tries always to see things in the best light. Still keeps very busy. Has begun having a lot of chest congestion and coughing up stuff, but we had that at the last with the Torisel.

I am trying to be positive, too, and I can be when I'm with him. Dr. scared me a little the one minute I saw him alone, but this med may work. I am trying to deal with his kids and their attitudes; my stepmother club has come into play lately.

Ruth

sallyvel
Posts: 7
Joined: Jul 2009

Welcome to the thread. Does your husband have papillary RCC? If so what stage, grade etc. was he on diagnosis? We are just starting out on the journey and looking for as much info (at least I am, my husband who has prcc stage 2, grade 3, uncertain of type doesn't seem to want to know as much). It is great that your husband remains positive and that you have switched doctors to one that cares. We have to see a new one probably in early Sept. for my husbands post-op laparoscopic right nephrectomy. Hopefully he will be good. We need more info about cell type and what to expect in the future. He surgeon who did the surgery assured us that he "got it all" and he has the best prognosis of all renal cell carcinomas. Being a grade 3 I am not sure that I entirely agree and if he turns out to be prcc2 then I really think he is off the mark from all that I have read. I try to be real positive for my husband and haven't really discussed any of my concerns to him yet.
I sincerely hope that the afinator works well for you.
sallyvel

dawnmomofthree
Posts: 39
Joined: Mar 2009

Hello Everyone,

I wish I had better news to report. I received an email this morning from Maryann's daughter Kat. Maryann passed away the morning of Aug. 20. She was not in any pain and went peacefully. Kat asked me to let everyone know. Many of us have lost a dear friend and there will certainly be a big hole in my life now. I miss her so much already.

Hugs to all,
Dawn

sallyvel
Posts: 7
Joined: Jul 2009

I never even emailed directly to Maryann but I feel that I knew her from reading all the posts of this thread. I am so sorry too learn that she lost her battle with this disease. She was a real inspiration to me as my husband and I grasped the meaning of "you have a kidney toumor". Our hearts go out to Maryann's family.
Sallyvel

imbkuz
Posts: 52
Joined: Apr 2009

I can't even write much except that there is a big hole in my heart. She was the first person to give me guidance and advice in my new journey. She was just amazing and just so helpful to me. What a lady!!! She will be sorely missed. I'm too upset to write anymore.My prayers are with her family.
Babs

imbkuz
Posts: 52
Joined: Apr 2009

I can't even write much except that there is a big hole in my heart. She was the first person to give me guidance and advice in my new journey. She was just amazing and just so helpful to me. What a lady!!! She will be sorely missed. I'm too upset to write anymore.My prayers are with her family.
Babs

donna_lee's picture
donna_lee
Posts: 975
Joined: Feb 2009

To all in this group -my regrets to hear of Maryann. She was a real trouper and offered so much information and encouragement to all. For anyone who is in direct contact with the family, please pass along my condolences.

On a lighter note, my s-i-l arrived in the states on 8/12 and he, my daughter and the boys came down to visit this weekend. It was great to see them, and know that he can stay here. We had a BBQ with them and son and his family on Saturday night. With all the allergies, there was lots of fresh, farmers' market produce we cooked to go with the steaks and chicken. Everyone has departed so it has quieted down. I'm glad the cleaning lady arrives tomorrow...but I had to pick up stuff so she could find the floor to vacuum. Lots of laughs and visiting

Regards to all, Donna_Lee

ruthelizabeth
Posts: 146
Joined: May 2009

Well, after the scare of blood in the urine, the dr's appt. this morning was fairly good. I mean DOn has gained a couple of pounds (you can still see his ribs reallllllly well, but the scale says he's up). The blood work is all good. The only problem is that none of the lumps have gone down and he keeps getting them.

On the up side the dr. isn't going to schedule any cat scans because, as he said, if we see the lumps going down, we'll know the drug is working.

Don has papillary renal cell cancer, stage 4.

The dr. is going to keep him on Afinitor for at least another three months, possibly more. He's hoping that if it doesn't work, Avastin will be approved so Don could go on that.

Ruth

ruthelizabeth
Posts: 146
Joined: May 2009

Seems Don has a mix of some clear cell with papillary RCC. The dr. is going to try Afinitor for one more month (total of three months then). At that point unless the Afinitor suddenly takes hold, he will either go to Avastin with Interferon or consult a specialist at the Moffitt Institute in Tampa.

ddt
Posts: 10
Joined: Apr 2009

Ruth, my husband's name is Don also and he has papillary with clear cell. He was diagnosed stage IV in December 2008 and it was in his lymph nodes. He tried Torisel which didn't work but has been working very well for a year and a half for a man with papillary where he went to receive the chemo. Don had ascites really bad. Was having about four to five liters a week removed. This is a very bad prognosis. He just started Nexavar a couple of weeks ago and the ascites has reduced unbelievably. The doctor had given him months unless we could get a chemo to work. This has given us hope which is what everyone needs. There is a clinical trial that is working really well for papillary patients. You can't have taken but one drug previously so my husband was not a candidate. You have to also have evidence that the disease has spread. Maryann tried to get into the trial also and was not able to because she had taken more than one chemo. It breaks my heart that she didn't survive long enough for that drug to be marketed. Two years ago there was no hope for these patients and now it's exploding. If we can just keep them alive long enough there are new drugs on the scene every six months it seems like. Afinitor is very similar to Torisel so we didn't try it since the Torisel didn't work. Avastin and Interferon are terribly harsh. I would get a second opinion. I just checked and the trial for XL880 or GSK1363089 as it is now called is closed but I had contacted a Dr. Logan in Indiana about the trial and really liked their approach. I didn't think the Nexavar would work because it seems more for clear cell so we are very excited to think that it is helping this much this soon.

ruthelizabeth
Posts: 146
Joined: May 2009

I appreciate the input. I guessed that the combination of Avastin and interferon would be very tough. The dr. sort of brushed me off and said their patients were just getting flu-like symptoms, but I read up on the two of them and it sounds not too good.

Don couldn't tolerate Sutent. He stuck out four months of Torisel with good results, if not long-lasting. We were put on that because the dr. said that Nexavar wouldn't be effective if Sutent hadn't worked. The problem with Sutent was that the side effects were so bad that he ended up on half the recommended dose and struggling at that level.

I hope that we'll see some good changes with Afinitor in this month. I am cautiously hopeful. He has been getting two kinds of subcutaneous lumps, round, golf-ball-sized ones and smaller ones that are red and pointy. A week ago he got a smaller one below his jawline on the side and a large area under his arm got all the symptoms of a large one about to develop, reddish and round. Yesterday I saw that the one under his jaw hadn't grown and may even be a tiny bit smaller. The one under his arm is fading and hasn't swollen up.

Forgive me for saying this, but I think you'll understand. I am hopeful, but I am almost afraid to hope. Okay, you can beat me up. I'm very cheerful with Don.

Ruth

Well, that all was this morning. Just had a call from Don. He has a large new lump.

ATM
Posts: 1
Joined: Sep 2009

Hi everyone, my name is Ron and I have also been diagnosed with papillary rcc. I tried to get on the XL-880 trial and was eventually denied (long story). Anyway I did a search for other trials with C-met inhibitors and found one for a drug called PF-02341066. If you look up this trial (which has been going on for a year and a half) you'll see several cancers listed that they are looking for but kidney cancer is not one of them. I called a research director at one of the testing locations and he informed me that they were looking for just a few specific types of cancer and, though it's not listed, Papillary Rcc is one of them. The trial is listed as a phase I but it is actually now a phase II. The drug has only been given to a few dozen people, mostly with NSCLC, and supposedly it has done well for them.

Here is a link

http://www.newsmax.com/health/melts_lung_cancer/2009/08/05/244159.html

One thing about this trial is that they want to test a tumor sample to see if there is a met mutation and/or amplification (apparently this is very common in Papillary Rcc), if you have it you can be allowed on the trial. So this is different than the XL-880 trial that allowed all Papillary Rcc patients on without testing for this specific defect (which is fine since most prcc patients seem to have it).

The problem is that it took them four weeks to finish testing my sample which seemed like a long time. I did not have a met defect so I did not become the first PRCC person on this trial. If anyone wants to check out this trial, I know that they don't care how many previous treatments have been taken.

It appears that next week I will be starting a trial with axitinib. I'll let you know how it's doing.

Ron

rasilk
Posts: 1
Joined: Mar 2010

hi

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