How long on Sunitinib?

EthelM

Hi Sue

I noticed that no one in the group has felt able to answer your question about how long your husband can stay on sutent. This might be a good question to post in the ask a nurse section of the online community.

I can understand why your husband is afraid to tell his oncologist about his true side effects because he's frightened that the drug will be withdrawn. However, how does he know that she wouldn't offer something better? Maybe, next time he speaks to his oncologist you could suggest that he asks what other treatments are available without letting on about his side effects.

Wishing you all the best

x

EthelM

Hi Sue,

I am on Pazopanib which is in the same "family" as Stùtent and have been on it for five years so far.  My cancer is mainly in my abdominal cavity and has metastasised to my lungs.

Several people take treatment breaks on Pazopanib to get a break from the side effects but you can also post on here for tips on dealing with specific side effects.

I find that nibbling on small treats can help deal with nausea, initially I started with sweets and biscuits but eventually moved onto healthier things such as crudites, grapes etc.

For sore hands and feet I use moisturising cream, I keep my feet open to the air as much as possible and wear crocs unless it is raining or snowy.  Others use a cream  high in urea, udder cream is quite popular as well.

Diarrhorea for me is usually triggered by certain foods, broccoli, raw onion and occasionally beer can trigger it for me.  I have noted what I have consumed and gradually narrowed it down.  If it does not stop after i have been to the toilet about 3 or 4 times i take loperamide (on prescription) but then the next day i usually have to start on fybogel (also on prescription) as it takes about 3 days for my bowels to return to normal.

I have no personal experience of dizzy spells so cannot assist you with that.  I have had night sweats but the only way i could deal with them was to sleep on top of the bed wearing several layers that i could shed or put on as i needed.

Personally I tell my oncologist everything as there are alternative treatments that he can prescribe but I can also argue my corner to remain on a particular treatment or manage my quality of life.  Your husband might want to ask about what criteria the oncologist would consider before changing his treatment and what the next treatment would be.  I suspect that providing your husband can cope with the side effects they will want to continue with the current medication.  I can appreciate that you find yourself in a difficult position.

One concern that I would have would be that I find it difficult at times to differentiate between symptoms and side effects.  By not telling his oncologist he might be not telling him symptoms of his disease.  Perhaps you could ask you husband how he knows which is which?

I hope that this has been helpful to you and that you and your husband can resolve your concerns.

Wishing you both all the best.

Gragon x

That's helpful, thank you for taking the time x