My husband just had his third Avastin infusion, his protocol is once every two weeks at 1/2 the usual dose. Sadly, he is that 10% of those who use Avastin that the treatment has completely kicked him in the butt. On the plus side, it seems to have done an excellent job reducing his inflammation (see MRI below). I'm checking with this group on those who have used Avastin and what were the side-effects, if any. Also, what was the upside? Just FYI, Greg's neuro-onc is recommending that he has 3 more rounds before we decide to give Greg a break.
For background, Greg is 62 yrs old, diagnosed with GBM on May 1, 2015. The tumor is in his right temporal lobe. Resection was not an option. He had 5 rounds of Temodar, his MGMT is methylated but his IDH1 is non-mutated.
The right scan is August, then yesterday's MRI, then August, then yesterday's
My son starting using avastin about 5 weeks ago and there is profound fatigue. He has also developed nausea. Hard to say if this is just avastin, but one observation is the day after an infusion he is wiped out. Sleeping and exhausted. He can be involved in a conversation and if someone stops talking to him, he will fall asleep while sitting up within seconds. By the next day this has improved significantly, but he remains very fatigued. What symptoms is your husband experiencing?
ReplyDeleteDear Michael, Besides fatigue, he has become less mobile/stable when he walks. We now are back to using a wheelchair outside the home. Also, his thinking is very loopy, he seems to be aware that he's not making sense. But most of the time, he speaks very little and just points to things. Regarding fatigue, because Greg is older, 62, he fatigue lasts longer but sometimes he gets agitated and needs to move around. I'm not sure if the Adderall is working for him, we might go back to provigil. How often does your son take Avastin and where? Have you noticed any upside since he started taking it? How long do they think he should remain on Avastin?
ReplyDeleteChance had Avastin at two weeks, sometimes three week intervals. He had a very positive attitude toward it - he really believed it helped him. If he had Avastin by itself, he always felt great. If he had Avastin and any of those chemos he tried, he was not great. I honestly believed if he hated chemo, it could not possibly work for him and if he "loved" Avastin, it could not hurt him. Who knows? The "not making sense" part was very hard on Chance. He knew exactly what he wanted to express and had been a great communicator, so losing that ability provided such frustration and discouragement.
ReplyDeleteJeremy receives avastin every two weeks. It is difficult at this point to know if it has been of benefit. MRI looks considerably better but this might be pseudo improvement due to changes in vascular permeability rather than direct tumor regression. His speech is becoming more of a problem for him and he is quite fatigued. The biggest problems are loss of hearing, balance problems and dizziness as well as nausea. This appears to be the result of a tumor that is impacting the 8th cranial nerve. This area shows some decrease in enhancement, but not much. He was placed on steroids yesterday. Although some respond very well to avastin, I think the BELOB trial shows that in general, the results are relatively short. BUt still, with a median PFS6 of about 51 percent when combined with CCNU, the benefit is encouraging. But the group also included IDH1 mutant tumors which will skew the results. We are hoping for enough improvement to allow the thyroxine suppression approach to kick in. Holding on to hope can be most difficult when dealing with a GBM.
ReplyDeleteYes, "Holding on to hope" is exhausting and frustrating. Where can I find the BELOB trial? Is it on Stephen's site? Greg's IDH1 in non-mutant. His tumor has remained stable for 18 months but with lots of inflammation. His neuro-onc, who has wanted to give Avastin a try for sometime, thought that this would make Greg feel better and reduce his inflammation. The inflammation has been reduced but Greg feels far worse. I'm willing to give it two more rounds before we give it a break. I am concerned that the results, as you pointed out, is short lived.
ReplyDeletehere is a link. http://www.thelancet.com/journals/lanonc/article/PIIS1470-2045(14)70314-6/abstract#
ReplyDeleteI'll upload this trial to the library, since it seems to be behind a paywall.
DeleteUploaded to the Avastin subfolder of folder 1.
Delete