sutent and dialysis

Hi to all,

Anybody there that can share experience please. My brother in low has no kidneys both removed because of tumors. last one removed in january 09 with tumor of 8 cm. has met on the lungs and on he is on dialysis. He also takes sutent @ 25 mg. started @50 but was to strong. he has mild side efects. worst thing is that his blod is not best hemoglobin is too low. and doctors do not know what is cousin it. Hb is in Croatia and doctors do not have much experience with it anyway. He is not eting much he has lost his tast for food and he brings just 800 gr to dialysis. hospital has no dietitian so you have to be one.

i do not know how can you get einough protein while on dialysis. i got him some protein powder and some hemp in order to increase protein intake but sometimes he refuse to take or just forget to take it. 

he had to stop taking sutent few times because of bad blod results. his doc has him every 14 days to do chest ex ray. and basicly taking sutent 14 days and 14 have a break. i am not sure that is right, anybody know anything about that. what happened if you have to stop for few days and then continue. how it works?  i read that it has to be taken for 28 days and then 14 days off.

i apologise for speling but english is not my first language and i wish you all good health or better health. and plese share your experience if you can.

G  

On 8/23/2009 Slavonija wrote:

Hi to all,

Anybody there that can share experience please. My brother in low has no kidneys both removed because of tumors. last one removed in january 09 with tumor of 8 cm. has met on the lungs and on he is on dialysis. He also takes sutent @ 25 mg. started @50 but was to strong. he has mild side efects. worst thing is that his blod is not best hemoglobin is too low. and doctors do not know what is cousin it. Hb is in Croatia and doctors do not have much experience with it anyway. He is not eting much he has lost his tast for food and he brings just 800 gr to dialysis. hospital has no dietitian so you have to be one.

i do not know how can you get einough protein while on dialysis. i got him some protein powder and some hemp in order to increase protein intake but sometimes he refuse to take or just forget to take it. 

he had to stop taking sutent few times because of bad blod results. his doc has him every 14 days to do chest ex ray. and basicly taking sutent 14 days and 14 have a break. i am not sure that is right, anybody know anything about that. what happened if you have to stop for few days and then continue. how it works?  i read that it has to be taken for 28 days and then 14 days off.

i apologise for speling but english is not my first language and i wish you all good health or better health. and plese share your experience if you can.

G  

I can share my story with you. My mother was dx July '08 with RCC Stage IV (Clear Cell). She only had one kidney because she had donated one to her brother many years ago. The original tumor was 18cm so they had to take her remaining kidney. She went on dialysis in August '08. She too was started on Sutent 50mg but the side effects were too much and her platelet counts would drop from 311,000 to 50,000s. She is now on 25mg Sutent and the side effects are better. The doctor has stopped the Sutent many times throughout this journey - the longest being for a period of 3 weeks while she was hospitalized so I don't see that as major issue.

Our last scan showed small shrinkage in the tumors, however they mets to her liver and lungs are so many and massive the doctor has ordered hospice as of last Friday. My mom has fought a hard long battle but I feel at this point she is getting tired. I hope you don't take that as words of discouragement - in fact I feel blessed to have had the last year together. My mom has shown such will to live that it truely does amaze me. Best of luck on your journey with your brother.

 Angela

On 8/23/2009 Slavonija wrote:

Hi to all,

Anybody there that can share experience please. My brother in low has no kidneys both removed because of tumors. last one removed in january 09 with tumor of 8 cm. has met on the lungs and on he is on dialysis. He also takes sutent @ 25 mg. started @50 but was to strong. he has mild side efects. worst thing is that his blod is not best hemoglobin is too low. and doctors do not know what is cousin it. Hb is in Croatia and doctors do not have much experience with it anyway. He is not eting much he has lost his tast for food and he brings just 800 gr to dialysis. hospital has no dietitian so you have to be one.

i do not know how can you get einough protein while on dialysis. i got him some protein powder and some hemp in order to increase protein intake but sometimes he refuse to take or just forget to take it. 

he had to stop taking sutent few times because of bad blod results. his doc has him every 14 days to do chest ex ray. and basicly taking sutent 14 days and 14 have a break. i am not sure that is right, anybody know anything about that. what happened if you have to stop for few days and then continue. how it works?  i read that it has to be taken for 28 days and then 14 days off.

i apologise for speling but english is not my first language and i wish you all good health or better health. and plese share your experience if you can.

G  

I'm not sure my experience will be of any value to you but here it is:

In mid June of this year I was diagnosed with metastasized renal cell carcinoma and started Sutent at 50 mg per day.  17 days into the 28 day normal cycle I developed pretty much all the known bad side effects plus a few not listed and I was sicker than I've ever been in my life.  Just as I got hit with the side effects, my wife fell and shattered her left knee cap and left wrist requiring surgery to put it back together.  She had been my "caregiver" and suddenly I had to become the care giver for both of us, so I discontinued the Sutent.  After about a month of not taking the Sutent, I restarted it at 25 mg per day to see if I could tolerate it.  At 25 mg, I could tolerate it.  The side effects tried to come back but weren't nearly as bad, plus the first time the side effects caught me off guard and I wasn't prepared for them.  This time I have a prescription anti-nausea drug plus anti-diarrhea drug, a prescription mouth wash which handles the sore mouth and prevents the ulcers from forming on my tongue and so forth.  After a  couple of weeks at 25 mg and being able to handle that dosage, I went up to 37.5 mg for a week and that went over ok, so today I started 50 mg again.  My 28 days ends on Sunday and then I stop the drug for 14 days. Then he wants me to restart at 50 mg for another 28 days.  They did a CT scan on me recently and the tumor in my lung has grown 25% since mid June which indicates the Sutent hasn't helped me so far but me stopping it for a month may be the cause and not the drug.

Good luck.

On 9/10/2009 Shotgun wrote:

 

On 8/23/2009 Slavonija wrote:

Hi to all,

Anybody there that can share experience please. My brother in low has no kidneys both removed because of tumors. last one removed in january 09 with tumor of 8 cm. has met on the lungs and on he is on dialysis. He also takes sutent @ 25 mg. started @50 but was to strong. he has mild side efects. worst thing is that his blod is not best hemoglobin is too low. and doctors do not know what is cousin it. Hb is in Croatia and doctors do not have much experience with it anyway. He is not eting much he has lost his tast for food and he brings just 800 gr to dialysis. hospital has no dietitian so you have to be one.

i do not know how can you get einough protein while on dialysis. i got him some protein powder and some hemp in order to increase protein intake but sometimes he refuse to take or just forget to take it. 

he had to stop taking sutent few times because of bad blod results. his doc has him every 14 days to do chest ex ray. and basicly taking sutent 14 days and 14 have a break. i am not sure that is right, anybody know anything about that. what happened if you have to stop for few days and then continue. how it works?  i read that it has to be taken for 28 days and then 14 days off.

i apologise for speling but english is not my first language and i wish you all good health or better health. and plese share your experience if you can.

G  

I'm going to address the taste changes. I just joined today, and sutent for has just failed. The one companion I had was a problem with the taste changes. I found only sweet stuff wasn't affacted (sweet tea, cream corn, fruit, etc). Most meats tasted awful with a very few exception. I was thankful for the 2 week off period. This allowed me to enjoy food for a while. When I was on sutent, I was on it for 4 weeks, and off for 2 weeks to recover. Later on the "hand and food syndrome" caused a lot of problems (that's why my oncologist reduced me from 50mg to 37.5mg). 

RCC has growth spurts, so it's important that your brother not stay off any chemo for too long a period. I should talk, after my 2 week recover period, is when it was discovered that sutent no longer workd. I'm still waiting on next next chemo to arrive (afinitor). All total, it will be 1 month that I will be off of chemo. Not good. 

 I pray that your brother will find a solution... he needs to eat as much of a proper diet as possible. Being on dialysis makes that even more important.  Many prayers for you and your brother... Darryl