Toricel Vs Sutent

Dear Walt,

I was diagnosed with Stage 4 RCC in May 06 and had my left kidney and adrenal gland removed in June 06. After I got out of the hospital in August and got my strength back I went on Sutent 50 mg for 12 cycles of 4 weeks on and 2 weeks off. I experienced lack of energy, foot and hand syndrom, and a few nose bleeds, I actually tolerated it a lot better then a lot of people I read about on the board. In Feb 08, I started on Avastin which didnt work for me and then went to Torisel about 1 1/2 months ago. After being on it for 3-4 weeks the mouth sores I had got so bad I was wasnt eating and eventually lost about 18 lbs. I also had nose bleeds which were every day compared to just occasionally with the sutent. I also got a lot more tired with the torisel compared to the sutent.

I have been using a variety of different medicines and concauctions to lessen the mouth sores but nothing seemed to work very well. I am going to start probably this coming wednesday on a lesser dose. The original was 25 mg. My suggestions would be to try to keep the sores under control before hand. The maker of Torisel suggestes to use 1/2 teaspoon of salt and 1/2 teaspoon of baking soda in about 8 oz of water 4-5 times a day. I didnt start until the sores appeared which probably was too late. Everyone reacts differently to these drugs as I have seen on this msg board. But that is what I would suggest to do. I also had some severe rashes that appeared on the inside of both of my arms that I ended up taking benedryl for as suggested by my oncologist. It seemed to clear the rash up.

Good luck and let us know how you do on the Torisel!

Terry 

On 7/5/2008 Terryjoe wrote:

Dear Walt,

I was diagnosed with Stage 4 RCC in May 06 and had my left kidney and adrenal gland removed in June 06. After I got out of the hospital in August and got my strength back I went on Sutent 50 mg for 12 cycles of 4 weeks on and 2 weeks off. I experienced lack of energy, foot and hand syndrom, and a few nose bleeds, I actually tolerated it a lot better then a lot of people I read about on the board. In Feb 08, I started on Avastin which didnt work for me and then went to Torisel about 1 1/2 months ago. After being on it for 3-4 weeks the mouth sores I had got so bad I was wasnt eating and eventually lost about 18 lbs. I also had nose bleeds which were every day compared to just occasionally with the sutent. I also got a lot more tired with the torisel compared to the sutent.

I have been using a variety of different medicines and concauctions to lessen the mouth sores but nothing seemed to work very well. I am going to start probably this coming wednesday on a lesser dose. The original was 25 mg. My suggestions would be to try to keep the sores under control before hand. The maker of Torisel suggestes to use 1/2 teaspoon of salt and 1/2 teaspoon of baking soda in about 8 oz of water 4-5 times a day. I didnt start until the sores appeared which probably was too late. Everyone reacts differently to these drugs as I have seen on this msg board. But that is what I would suggest to do. I also had some severe rashes that appeared on the inside of both of my arms that I ended up taking benedryl for as suggested by my oncologist. It seemed to clear the rash up.

Good luck and let us know how you do on the Torisel!

Terry 

Hi Terry- Thanks for responding to my question. I also was able to handle the side effects of Sutent fairly well. In fact, during my last cycle of Sutent I did not have any side effects other than diarrhea. I was suprised to find out on my last CT scan that the tumors in my lungs had started to grow again. Do you also have mets to the lungs? I will try to stay ahead of the mouth sores as you have suggested. I have been using a prescription mouth wash called "Triple Mix SUSP" while on Sutent. It doesn't seem to cure the mouth sores but it does have a strong numbing effect which lasts for about an hour. I am also worried about the possibility of renal failure in my remaining kidney. I understand that it is a rare side effect but the thought of dialysis is not pleasant. I will keep you informed on my progress and I would like to hear from you on how your treatment is going. I won't  be getting another CT scan for about 3 months. Have you had a port installed for your weekly infussions? I've been thinking about waiting until I find out if I can tolerate the Toricel or until I find out if it's working.

Good luck to you and stay in touch

Walt

Dear Walt,

I have mets in my left lung, abdomen, rt adrenal gland, a few lymph nodes, and now new growth in my liver.

I agree with you in that it seemed like the longer I was on Sutent the more bearable the side effects became. Didnt have a port installed for the weekly IV treatments but when I went in to see the oncologist or his nurse each week I usually had a blood draw so I just asked to have an IV draw put in when they drew blood so they only poked me once. My oncologist keep close tabs on my blood tests to make sure my one kidney was working correctly. My mouth is finally getting better but I dont have my voice back yet. I ended up using anything I could get my hands on to numb the pain in my mouth. I even used sepacol when I ran out of the prescription the dr gave me. Anyway, hope things are going well for you. Take Care!

Terry

Thanks Terry- Had my first infusion of Torisel on Monday and seem to tolerate it well. I'll keep in touch on my progress and you do the same. Good luck.

 Thanks-Walt

Hey Walt,

Wanted to pass some info along to you about Torisel.

I had some big problems with mouth sores after my second dose. It got so bad my oncologist had to take me off of it for 2 weeks. I ended up losing about 20 lbs or so cuz I couldnt eat.Once the sores went away I started the water, salt, and baking soda mixture suggested by the treatment center to keep the sores from appearing at all. It seems to have worked or maybe it is because they put me on a reduced dose of 15 mg. If I can keep the sores away, the dr will move me back up to 20 mg next week. I try to swish a quart of water, 2 tbsp of salt, and 2 tblsp of baking soda a day in my mouth. Hopefully, you're treatment is going good! I am feeling a lot better though.

Terry 

On 7/25/2008 Terryjoe wrote:

Hey Walt,

Wanted to pass some info along to you about Torisel.

I had some big problems with mouth sores after my second dose. It got so bad my oncologist had to take me off of it for 2 weeks. I ended up losing about 20 lbs or so cuz I couldnt eat.Once the sores went away I started the water, salt, and baking soda mixture suggested by the treatment center to keep the sores from appearing at all. It seems to have worked or maybe it is because they put me on a reduced dose of 15 mg. If I can keep the sores away, the dr will move me back up to 20 mg next week. I try to swish a quart of water, 2 tbsp of salt, and 2 tblsp of baking soda a day in my mouth. Hopefully, you're treatment is going good! I am feeling a lot better though.

Terry 

Hi Terry - I have had 3 treatments of Torisel. Had very painful mouth sores up until about a week ago. Seemed to have died down in the last week. Now I am dealing with zit like sores that are primarily on my face, neck, or upper chest although I do have some sores on other parts of my body. Will be seeing my oncologist and getting another infussion on Monday and I'll try to get a remidy for the body sores. My last blood work showed a white blood count (WBC) of 2.6. If it gets any lower than that I might have to stop my toricel and let my blood counts recover. Thanks for your advise on the mouth wash. Let me know how your doing and I'll keep in touch.

Walt

On 7/25/2008 Terryjoe wrote:

Hey Walt,

Wanted to pass some info along to you about Torisel.

I had some big problems with mouth sores after my second dose. It got so bad my oncologist had to take me off of it for 2 weeks. I ended up losing about 20 lbs or so cuz I couldnt eat.Once the sores went away I started the water, salt, and baking soda mixture suggested by the treatment center to keep the sores from appearing at all. It seems to have worked or maybe it is because they put me on a reduced dose of 15 mg. If I can keep the sores away, the dr will move me back up to 20 mg next week. I try to swish a quart of water, 2 tbsp of salt, and 2 tblsp of baking soda a day in my mouth. Hopefully, you're treatment is going good! I am feeling a lot better though.

Terry 

Hi Terry- A quick note to let you know that those body sores (welts) increased in severity and on Saturday my throat started closing off. A quick trip to the emegency room where they filled me with a steroid (prednisone) and benadryl. Welts are a lot better today (Sunday) and the throat has improved somwhat. Would be suprised if the doctor ordered another infussion of Torisel with the kind of reaction I had to it. Will see the doctor tomorrow and will keep you informed.

I was only on Sutent for 3 weeks.  I was having major skin issues.  I have had about 50 treatments of Toricel and have only had skin issues every now and then and not as bad as with the Sutent.  I have fatigue (I just take an afternoon nap), elevated blood pressure and cholesterol ( adjusted  meds), acid reflux.  My tumors are stable and some have decreased in size or disappeared.

God bless you with this change.  May HE protect you from any dibilitating side effects.

 Texas Teacher