by Crislyn on Wed Jun 20, 2012 04:34 PM
My husband was diagnosed with stage IV renal cell carcinoma four months ago. We have two children and this has been a traumatic time. As I am sure many people on this forum can understand, we are facing losing husband (and best friend), father, and our home.
Since his diagnosis he has had brain surgery to remove a tumor in his head, stereotactic radiosurgery on two additional brain tumors, radical kidney nephrectomy which removed a 4 pound tumor, and attempted IL-2 which was cancelled after the first round because his liver and kidney almost failed.
In addition to still having disease at the kidney site, he has two tumors in glands in the lungs and one on his sternum bone which is causing him much pain. We are meeting with a doctor tomorrow to see if stereotactic radiosurgery or stereo frequency ablation can be conducted on any of his current tumors. After that, he is going to be put on votrient.
Can anyone tell me if they have had stereotactic radiosurgery or stereo frequency ablation on a bone or gland tumor? Also, I would appreciate hearing anyones stories on votrient. We pray that we will be able to live a somewhat normal life on this drug, at least for a while. My husband is a contractor and unfortunately his work is very physical. I am not sure if there is any hope for him going back to work, but we are fighting to keep our children in their home.
All the best to everyone,
by LisaH2 on Wed Jun 20, 2012 11:51 PM
My sympathy to you in this rough time, you have all been through a lot in the past several months! It has been one year today since I had a radical nephrectomy for stage IV RCC. I have mostly lymph node metastases, with a few lung tumors. The subtype of RCC I have is papillary, which can be trickier to treat than clear cell RCC. I'm now on votrient, which is my third treatment. The first treatment I was on worked well for 6 months, the second treatment was not effective for me -- so my first advice is to stay assertive with treatment and be aware that not all drugs will work equally well for all people. Don't give up! There are good drugs out there and more coming out all the time!
Votrient for me has been effective but does have some side effects, for me that is mainly nausea and diarrhea. Those side effects have been controlled with medicine -- also they settled down after a couple of months on treatment. So advice 2 is to try the votrient and stay in close contact with your physician to control any side effects and not try to tough it out with nausea or diarrhea.
It must be very stressful for all of you not to know if your husband will be able to continue working. If not, and he has been paying into social security (I don't know how this works for self-employed, sorry), you have the option of applying for social security disability. That is an individual decision and I'm not trying to force the issue one way or the other, just want you to know that stage IV RCC does make him eligible for disability if he can't work.
I hope this helps a bit. It sounds like you are doing your best to fight and to keep a good attitude, which goes a long way in keeping going!
by Crislyn on Thu Jun 21, 2012 01:27 AM
Thank you so much for taking the time to respond. It is nice to hear from someone in a similar situation and thanks for sharing your votrient experience with us. We will take your advice and pursue help controlling any side effects.
My husband hasnt worked in 5 months and we did apply for disability, but got denied because they said he didnt pay in...which is strange because we pay a significant chunk each year to social security. I havent had time to fight with them on that yet, but I need to get on it soon. I think they blanket deny people a lot of time and your only hope for consideration is to appeal it. Not too sure...maybe we dont qualify. I work full time and have a good job, but not enough to make it for a family of four. Here's hoping disability will help.
Anyway, I really do appreciate hearing from you and to say I wish you all the best is an understatement. :-)
by TonyJJ on Mon Jun 25, 2012 01:25 PM
To help answer your question, a recent study found that 70% of patients preferred pazopanib while only 22% preferred sunitinib and 8% had no preference. The difference was due mainly to better quality of life and less fatigue reported for pazopanib.
You know, although I’m sorta a tough old guy, your plight brings a tear to my eye. Damn Stage IV RCC, regular home, kids, and hubby’s must-work circumstance with painful sternum bone cancer because the powers-that-be refused him a disability pension!!
My advanced RCC ain’t half as bad as you hubby’s but if I wanted a good pension I could get it in a flash right now merely by asking my doctor to write a one sentence note to big brother stating that I am medically unfit for work (none of that ‘contributions’ nonsense here).
http://www.kidneycancercare.ca/Patient-Preferences-Revealed. " target="_blank" rel="nofollow">http://www.kidneycancercare.ca/Patient-Preferences-Revealed.
PATIENT RCC DRUG PREFERENCES REVEALED
Source: John Schieszer
June 4, 2012
CHICAGO—Patients with metastatic renal cell carcinoma (mRCC) prefer pazopanib over sunitinib because the former is associated with a better quality of life (QOL) and less fatigue, according to study findings presented at the American Society for Clinical Oncology 2012 annual meeting.
In a double-blind, randomized crossover study, 168 mRCC patients were randomized to pazopanib for 10 weeks followed by a two-week break and then sunitinib for 10 weeks, or vice versa. In the primary analysis of 114 patients, 70% preferred pazopanib, 22% preferred sunitinib, and 8% had no preference.
The differences were statistically significant. The most common reasons that patients gave for preferring pazopanib were better QOL and less fatigue. In addition, patients on pazopanib had fewer dose reductions than those taking sunitinib (13% vs. 20%) as well as fewer treatment interruptions (6% vs. 12%).
“While we expected patients would prefer one drug over the other due to the known toxicity profiles, we didn't expect this great a preference,” said lead investigator Bernard J. Escudier, MD, of the Institut Gustave Roussy, Villejuif, France. Study findings provide “an important reminder that low-grade toxicities patients experience may not seem bad, but if you are experiencing the toxicity over a long time, it has an effect on your quality of life.”
How patients feel when they take a drug over many months is not reflected in traditional adverse event reporting, he said. Patient-reported outcomes like these, however, are being added to traditional efficacy outcomes to better understand the clinical relevance of differences in toxicity between therapies. In this current environment, mRCC patients may take therapies for several years. QOL differences between two therapies may appear relatively modest to physicians, but can be perceived very differently by patients who may have to take therapies for many months or years.
Physician preference was not as strong as patient preference: 60% preferred pazopanib, 21% preferred sunitinib, and 21% had no preference. The study was funded by GlaxoSmithKline, the maker of pazopanib, and involved several European, U.K., and U.S.cancer centers.
“Drugs with relatively similar safety profile can be perceived very differently by patients, and the difference observed in this study is more than any expectation we had before embarking into this study,” Dr. Escudier told Renal & Urology News.
“This difference will be important to explain to patients with kidney cancer when they could receive both drugs. Patient preference should become a major endpoint to consider in oncology, especially with development of chronic therapy and by consequence of chronic toxicities. The grading system used in oncology today is more accurate to describe acute toxicity that low-grade chronic toxicity. As an example, having fatigue or nausea three days a month is very different than having continuous fatigue or nausea, even if grade of toxicity is lower.”
Urologist Robert G. Uzzo, MD, FACS, Chairman of the Department of Surgery at Fox Chase Cancer Center in Philadelphia, said the study findings are novel. As mRCC becomes more of a chronic condition instead of a terminal illness, patient preferences will become a bigger concern for physicians, Dr. Uzzo said.
by Crislyn on Wed Jun 27, 2012 04:17 PM
I understand where you are coming from. My husband is from Scotland and if we lived there we would be eligible for some sort of assistance, but not here in the US. Year after year we have been paying on his social security (he is self-employed), but never knew we had to pay an additional amount for FICA to be able to get disability. From most the people I have spoken to, it seems that the majority of self-employed Americans dont know about this. Just paying social security and your taxes does not make you eligible for an disability benefits. Spoke to an attorney and nothing we can do on that one.
I think my husband feels pretty similar to you. Although day to day, and sometimes moment to moment, feelings change predominently he is worried about how the little ones and I are going to make it.
Have you checked out the KINDEY-ONC list? I signed up to that last week and have already learned so much. Its full of knowledgeable (and really lovely) people from either a medical or RCC patient background. Sounds like you are pretty savvy with you internet searches, but thought I would mention it just in case.
Im really glad that you are feeling great. My husband's a strong, tough Scotsman, but two major surgeries, IL-2, and radiation have really taken the wind from his sails. Also, he has lost so much weight (mostly muscle) which has made him even more weak... I think you put it best - it sucks!
Sound like your nephrectomy is coming up soon. Will be thinking of you.
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