One patient with glioblastoma still alive nine years later
by Basset58 on Wed Dec 14, 2011 11:31 PM
by amy122981 on Fri Dec 16, 2011 12:11 AM
Hello, my mom received IL2 at Beth Isreal in Boston this year. She is 53, but I've never heard of an age limit to receiving it. You just have to be in general good health (except for having cancer of course). She never had any medical problems, and they had to do a work up for cardiac, neuro problems to make sure she was a candidate. I think it's ok if you have chronic pain too, the treatment causes joint pain but they had her on narcotics toward the last days of treatment. The treatment is scary, but so worth it. It works best if you have the clear-cell kind. Toward the end, she couldnt even get out of bed, due to the fatigue and fluid. She did end up in ICU after 4 or 5 doses the last week; heart was racing and she was becoming very confused. But now she has NO EVIDENCE OF CANCER! Try it please.
by Basset58 on Fri Dec 16, 2011 02:47 AM
by myboys2 on Fri Dec 16, 2011 08:34 PM
I have not ever heard of an age limit but I have heard of certain health issues. Typcially you have to pass some tests to be considered a viable candidate. We have not done IL2 not because it's off the table but because Sutent is working. If it stops we will consider it or something else at that time. We were also told by our onc at St Lukes, Dr. Dutcher, that she is hopeful that PD1 will be available and she feels it will be much more successful. We too have bone mets. I have included our bio for your reference to help you see what our treatments have been and how it's going.
Gail mother of Cody 21
diagnosis 8/10 unclassified RCC
8/16 checked into NYU as emergency surgeon concerned head tumor was closing ventricle to brain
8/17 embolization via femoral artery to bone lesion on skull 7 hours
8/18 repeat of above
8/19 10.5 hour surgery to remove skull mass (about 45% right skull)
9/4 titanium skull inserted
9/29 begin sutent 25mg 2 weeks on one week off; then 37.5 2 weeks on 1 week off; then 50mg for 3 weeks then off 5 days (preop tests show 3 tiny liver lesions shrinking) Also Denosumub injection. No lymph or lung
11/16 full neph of lft kidney 5.5 tumor (started at 6cm but sutent was working!!)
12/1 begin sutent again at 37.5 to work into it
12/8 sutent to 50mg for a week then off a week and continue cycle of 50 2 weeks on 1 week off until next scans
12/12 began radiation of remaining skull mets Monday and Thursday for 3 weeks high dose (already noted necrosis of tumor after one dose)
by Basset58 on Fri Dec 16, 2011 09:02 PM
by MarcyS on Tue Dec 20, 2011 05:07 PM
There is not an age limit that I am aware of. There is a health requirement, cardiac stress test, etc.
My husband is in remission after IL-2 treatmentt so we are very much a proponent of this treatment. It doesn't surprise me that a doctor said no. Many doctors won't administer it. It MUST be done in intensive care. Settle for nothing less and if they won't do it in ICU, don't have it done. It is nothing to mess around with. When done properly the results can be remarkable, however, there is a small percentage of those that get remission.
If you look back in my postings, I wrote a day by day account of Orville while on IL-2 and his experiences.
Good luck to you.
by Basset58 on Tue Dec 20, 2011 05:30 PM
by myboys2 on Tue Dec 20, 2011 07:35 PM
PD1 is the other name for mdx-1106
by MarcyS on Tue Dec 20, 2011 08:39 PM
On Dec 20, 2011 5:30 PM Basset58 wrote: Thanks for the reply Marcy. This has been a horrendous journey. My friend goes to a specialist tomorrow. It seems she is too weak for the IL2 so she needs to strt on something as the cancer is causing great pain.
I am having a hard time finding your diary in the threads. Which month should I start looking? Have a happy holiday. Rebecca
On Dec 20, 2011 5:30 PM Basset58 wrote:
Early July was the last posting.
Hopefully this link will work.
by JEFF_A on Thu Dec 22, 2011 01:17 AM
i did il2 in 2009. the teatment is not good BUT if it gives you the hope you must take it.
it is woth the bad times that u will have when getting it but as i said you must give this a chance.
aslo if you go onto something like sutent u can not then go to il2 if it doest work,
where do u live.
email me at
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