One patient with glioblastoma still alive nine years later
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by Lloyd - November 11, 2011
Got my first infusion Oct 26 and scheduled for the next on Nov 16th. Have had no side effects at all which is great but I'm wondering if I'm on the low dosage for the trial.
Great news about the shrinkgae of your Mothers tumors. I get my first CAT scans Dec 7th and hope for simular results. I'll keep in touch.
by Lloyd - October 10, 2011
I've been dealing with RCC stage IV since 2001. Gone through IL2 and now, on sutent since 2008, but it is no longer effective. I'm entering a clinical trial using MDX 1106, It's a phase 2 trial to determine dosage amounts. Anyone been through the phase 1 trial or have any information ?
by Lloyd - September 23, 2011
Back in 2002, I went through 5 IL2/Bay50 treatments fron March thru September in a clinical trial. Had my left kidney removed in Dec, 2001. My dosage was 2 injections per day over 7 days in ICU at Dartmouth-Hitchcock in NH.
The first 14 injections were not bad. Only a rash on my chest. After a weeks break I went in for the second weeks treatment. IL2 has "memory" so the side effects came back quickly: mainly skin problems,itching and rash and nausea. It gets more challenging as the treatment progresses.
The one thing I learned that after two treatments, do not take a shower! It only heightened the itching and peeling. Keep plenty of body lotion on hand. Taking baths with the stuff for poison ivy helped me.
I had no limitation on diet at home or in the ICU. The combination IL2 and Bay 50 present slightly less acute side effects but still were a challenge. It worked for me by keeping my lung nodules from growing for 5 years until another nodule popped up in my pancreas. Went on Sutent, killed that nodule and now I'm status quo, still stage 4 but treating it as a chronic disease.
Biggest secret: Stay Positive no matter what!
Best wishes and hang in there!
Male, age 67. (it'll be 10 years this Dec 3rd)
by Lloyd - September 11, 2011
Before anyone goes to a Cancer treatment center of America, be sure to ask if they accept your insurance. Since I ( and about 11 million other Americans) have a Medicare Advantage program, we are not acceptable to CTCA.
They may be wonderful, but only to those acceptable to their board of directors!
Before anyone goes to a Cancer treatment center of America, be sure to ask if they accept your insurance. Since I ( and about 11 million other Americans) have a Medicare Advantage program, we arenot acceptableto CTCA.
They may be wonderful, but only to thos acceptable to their board of directors!
by Lloyd - April 15, 2011
I have been on Sutent since 2008 at various dosages. I am now doing 50mg 2 weeks on and 2 weeks off since Oct of 2010. Last CAT showed a decrease in nodules in lungs. Check with your oncologist to see if this is an alternative for your sister. Side effects are much more manageable.
Male age 67 with RCC since 2001
by Lloyd - January 27, 2011
I looked into cyberknife in Boston a year or so ago but since Sutent was keeping the nodes in my lungs stable, the doc said I'm a candidate but not then.
Since that time, I investigated SBRT ( stereotactic Body Radiation treatment) which is a bit different as no gold pellet is placed in the tumor. Google it for more info.
Again, since Sutent was working, They recommended against it. If Sutent stops working, I think I'll fight for the SBRT alternative as it is non-invasive. The Doc said that RCC is a radiation resistent cancer but with SBRT a much higher dose is used as it is precisley aimed at the tumor with minimal or no damage to surrounding tissue.
I've had RCC since 2001 with my left kidney and associated tumor removed laproscopically. You're right, never give up and have a game plan, treatment-wise, if one stops working.
Hope this helps,
Male, age 67, veteran of IL-2 clinical trial and the USAF !!
On 50mgs Sutent 2weeks on and 2 weeks off . Been on various dosages since Feb, 2008. Side effects manageable. It will be 10 years, Dec 3, 2011 !
by Lloyd - December 16, 2010
I've been on Sutent since 2008. Was taking 50mg per day in the morning. Someone posted that taking it before bed works better. They were right. Check with your doc and give it a try. Best Wishes and hang in there!
by Lloyd - December 10, 2010
I can understand how the member of your family is concerned. Maybe this will help.
I just celebrated my 9th year living with RCC, stage IV with multiple nodules in my lungs from day one. Back in 2001 there was only one treatment for RCC after the kidney and associated tumor were removed: IL2. I did that ( not pleasant) and needed no drugs until another tumor showed up in my pancreas.
By then (2008) sutent was approved and I have been on it ever since. It killed the new tumor. My understanding is that most RCC is slow growing. In addition, there are quite a few treatments available today.
RCC is a very sneaky disease and once metastised, will probably show up in later years elsewhere in the body. I am planning on this happening to me and have alternative treatments in mind should this happen. Right now, i'm treating RCC as a chronic disease that drugs are available for, as are Cyberknife and other alternatives.
Worrying will do no good. He must stay positive and aggressive in dealing with this disease. This means second opinions, staying informed about new treatments as they become available and realizing that RCC is not necessarily a death sentence. Be your own advovate.
Be sure he is under the care of a RCC specialist in whom you trust and believe. I would double ckeck as to the accuracy of a pet scan on RCC. My pet scan did not indicate RCC in my lung nodules.
I hope this helps. I wish you both the best.
by Lloyd - November 17, 2010
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.
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