treatment choices

LouieB
LouieB Member Posts: 2
edited March 2014 in Kidney Cancer #1
Tomorrow I will meet with an oncologist to discuss possible treatments for my kidney cancer. I had surgery Jan. 7 to remove a kidney and other tumors (this is Stage 4, I assume). Things went well, I was back on my feet in an amazingly short time. But now the cancer is showing signs of coming back, and I face a choice of 1) Sutent treatments or 2) research trials for Avastin-Torisel vs. Avastin-Roferon. Does anyone have any experience or knowledge that would help with this decision?

Comments

  • HeyRay
    HeyRay Member Posts: 18
    #2
    Other treatments
    Hi LouieB,
    My name is Ray and I am stage IV RCC. I have a lengthy posting describing My whole fight so far it's listed under Interlukin-2 treatment. Hope it provides you another option. Good Luck.
    Ray
  • JohnD9913
    JohnD9913 Member Posts: 5
    #3
    HeyRay said:

    Other treatments
    Hi LouieB,
    My name is Ray and I am stage IV RCC. I have a lengthy posting describing My whole fight so far it's listed under Interlukin-2 treatment. Hope it provides you another option. Good Luck.
    Ray

    Treatment
    I am Stage 4 RCC with met to 3 spots on various bones. I started out with Sutent @ 50mgs which I found intolerable, Put me in bed for 2 wks. We also tried a reduced dosage, with no significant improvement. We found that Sutent was not even phasing the growth and spread of RCC so I elected to switch to Torisel IV once a week. I am now in my 23rd week of this treatment. These go in 8 consecutive weekly treatments with a break between each set of 8. For me, other than an occasional mouth sore, I am able to lead a fairly normal life and activity, whereas, with Sutent, I was pretty well bedridden with the side effects. My last p scans have shown Torisel has worked to the degree that there is no spread of the RCC to any new sites, and the current sites show no growth and some reduction. My oncologist has told me that RCC has many strange faces, and what works for one, may not for others. I would say that if you are tolerating Sutent with its side effects, and it doesn't put you down and you are able to remain active and such, and your tests show improvement, then go with Sutent. If not, Torisel would be my next choice. I get mine weekly IV, I understand that Torisel may be available in pill form now. Not familiar with clinical trials with Torisel in pill form. But hang in there, there is always something new coming out....My best to you and stay in touch......John
  • LouieB
    LouieB Member Posts: 2
    #4
    JohnD9913 said:

    Treatment
    I am Stage 4 RCC with met to 3 spots on various bones. I started out with Sutent @ 50mgs which I found intolerable, Put me in bed for 2 wks. We also tried a reduced dosage, with no significant improvement. We found that Sutent was not even phasing the growth and spread of RCC so I elected to switch to Torisel IV once a week. I am now in my 23rd week of this treatment. These go in 8 consecutive weekly treatments with a break between each set of 8. For me, other than an occasional mouth sore, I am able to lead a fairly normal life and activity, whereas, with Sutent, I was pretty well bedridden with the side effects. My last p scans have shown Torisel has worked to the degree that there is no spread of the RCC to any new sites, and the current sites show no growth and some reduction. My oncologist has told me that RCC has many strange faces, and what works for one, may not for others. I would say that if you are tolerating Sutent with its side effects, and it doesn't put you down and you are able to remain active and such, and your tests show improvement, then go with Sutent. If not, Torisel would be my next choice. I get mine weekly IV, I understand that Torisel may be available in pill form now. Not familiar with clinical trials with Torisel in pill form. But hang in there, there is always something new coming out....My best to you and stay in touch......John

    Treatment
    Thanks, Ray and John. I went with Sutent for now because the research trials would have required weekly IVs at Duke and I want to do some traveling. I was about to spend Thanksgiving with relatives when my world turned upside down and a CT scan showed I had kidney cancer. The disease had invaded the entire kidney and gone up a large vein to the aorta and was peeking in there. So after extenstive surgery Jan. 7 — and removal of the right kidney, adrenal gland and various tumors along the way to the heart — all obvious signs of the disease were removed. I was about to join a research study to determine how well Sutent keeps the cancer from coming back when tests in February showed it was already coming back (if, in fact, it hadn't been still lurking there microscopically). So I was presented with the choices of Sutent straight out or the research trials with Avastin/Torisel or Avastin/Roferon. I'll be taking my third Sutent pill today. I'll let you folks know how I'm doing. And Ray, I was reading your posts early on. You're a true inspiration. I'm following your posts with avid interest.
  • JohnD9913
    JohnD9913 Member Posts: 5
    #5
    LouieB said:

    Treatment
    Thanks, Ray and John. I went with Sutent for now because the research trials would have required weekly IVs at Duke and I want to do some traveling. I was about to spend Thanksgiving with relatives when my world turned upside down and a CT scan showed I had kidney cancer. The disease had invaded the entire kidney and gone up a large vein to the aorta and was peeking in there. So after extenstive surgery Jan. 7 — and removal of the right kidney, adrenal gland and various tumors along the way to the heart — all obvious signs of the disease were removed. I was about to join a research study to determine how well Sutent keeps the cancer from coming back when tests in February showed it was already coming back (if, in fact, it hadn't been still lurking there microscopically). So I was presented with the choices of Sutent straight out or the research trials with Avastin/Torisel or Avastin/Roferon. I'll be taking my third Sutent pill today. I'll let you folks know how I'm doing. And Ray, I was reading your posts early on. You're a true inspiration. I'm following your posts with avid interest.

    LouieB, keep the faith, there are new meds coming out all the time...I started Sutent and switched to Torisel, when Sutent proved ineffective....But don't let that bother you, many people have had good results with Sutent, my case it just didn't work....Keep up the good work and we're here for support if needed.....John
  • FineChina
    FineChina Member Posts: 4
    #6
    Critical Decision for You
    Itoo have stage 4 RCC am 3 years out on my 3rd treatment. Treatment 2 was abt 869 a clinical trial from MDa. Had I waited and gpnr eoth thr\erapy I am now,affinitor, I would not have been eligle for the clinical abt 869 trial.

    Use of sutent now may exclude you from entering a clinical trial later. Generally I would try the promsing clinical trial first because you can always get sutent. TYhe reverse course may not be treu.

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