Sutent Patients

Hi, 

I am interested in learning more about patient experiences on Sutent.  Aside from positive scan results, what motivates you to continue with the treatment and push through the adverse side effects?  Conversely, is there ever a point where you feel that the side effects just aren't worth continuing the treatment, and you request that your doctor switches you to another drug?

Additionally, what do you feel are the gaps in the support you receive?  if Sutent were to develop a patient support group, what kind of resources would you find helpful & useful?

Any feedback is greatly appreciated, thank you!

On Nov 16, 2010 8:15 PM beachbum87 wrote:

Hi, 

I am interested in learning more about patient experiences on Sutent.  Aside from positive scan results, what motivates you to continue with the treatment and push through the adverse side effects?  Conversely, is there ever a point where you feel that the side effects just aren't worth continuing the treatment, and you request that your doctor switches you to another drug?

Additionally, what do you feel are the gaps in the support you receive?  if Sutent were to develop a patient support group, what kind of resources would you find helpful & useful?

Any feedback is greatly appreciated, thank you!

 

Hi, I've been on Sutent 28/14 since Dec 09 & have mixed feelings about it. I have rcc mets to rib, pelvis & found out lastweek now in femur. My doc says it's working because rib & pelvis area's are stable despite new site being found. I don't feel as bad now as I did when I first started it. My main complaint is the intense diarrhea which is now somewhat controlled by a prescription medication called Lomotil. Imodium didn't work for me. I'm not sure if we the people have the right to change medications without the insurance companies approval. I believe there are ways around that with your doctors assistance. My insurance company provides me with Sutent Support. A Pharmacist from the specialty drug dept calls me every month & is available for me to call him as well. He is wonderful & spends an hour or so talking to me and answers all of my questions & keeps a log on my progress, symptoms etc. Check with your insurance company & ask if they provide this service. I wish you much luck & hope you can continue treatment w/o too many side effects. I believe Sutent has a blog on their site something similar to this site. 

Hi,

I am taking a low dose of sutent, 25 mg, one week on and one week off. The main problem I have is that my white blood cell counts are low and I am at risk of infection. I have to have neupogen shots to boost my white cell count. I have blood work once a week and the shots anywhere from once a week to three times a week. I also have diarrhea, but not daily, and fatigue. I was having mouth sores but those have improved a lot. I also have a cancer case manager who calls me frequently to check on my progress.

Jane

I have been dealing with RCC since Dec, 2001. I went through IL2 in 2002 with nothing else until 2008. I started Sutent in Mar 2008 and have been on various doses since.  I now take 37.5 MG four weeks on and two off.

My motivation lies in the fact that once RCC has spread, ( Iv'e been stage 4 since the beginning) you can bet it will show up again elsewhere. Sutent has been effective in controlling the growth of my lung modules, killing a nodule in my pancreas (the reason I stared Sutent), and reducing others. I expect to be on it forever to deal with metastasis to small to see on a cat scan.

I started at 50mg and did reduce it due to side effects destroying my quality of life. At 37.5 mg, I can manage to do the things I like ( hunting, fishing, etc.) during the first two weeks on and during the break.

To my knowledge,  all RCC drugs have side effects which affect people differently. If it does stop working, then we would look at switching drugs.

Support needs vary individually. Some find it very helpful and others may not. I would suggest that support is most helpful at first diagnosis rather than after the patient has been dealing with RCC for sometime. Sutent support would be most helpful initially. Personally, I never took advantage of any support groups, other than this forum. Hearing others speak of their experiences with RCC has been very helpful and informative. 

I, too, am now taking the same low dose of Sutent, 25 mg, but 3 weeks on and 3 weeks off.  My main problem is also the decreasing white blood count, which is worrisome.  How long did you take Sutent before the white blood count problem occurred?

I have diarrhea but can manage it with diet so far. and practically no fatigue.  I walk a  lot and find that helps.

Also, I think it is nice that you have a cancer case manager who calls you frequently.  I don't get that kind of support from my care providers.