For a quick recap of my experience, I was diagnosed with a grade 3 AVM in my left parieto-occiptal lobe early last year, and went through GKR last August. Since May of this year, I’ve been dealing with brain swelling and radiation necrosis, and have been on decadron that hasn’t seemed to be helping. I’m battling some vision loss in my right field of vision, as well as weakness in my right arm.
Anyway, last week I was able to start Avastin as a way to hopefully decrease the swelling. It was a pain to get the infusion treatments approved by insurance, but the actual infusion itself was relatively painless and only took about 45 minutes once everything was started. I’m currently dealing with some fatigue and nausea as a side effect, but I’m hoping to have some relief from the swelling soon–the doctors seem confident that the treatments will work. I’ll go in for 3 more infusions, once every 3 weeks. Also hoping I can taper off the steroids soon, that would be awesome.
Just sharing my experience in case anyone else is going through something similar. Not sure if anyone active on here has been through Avastin treatments. If so, how long did it take for you to notice any difference or relief? I’m trying to be patient, but I’m also really looking forward to feeling better (aren’t we all). Thanks!
Sorry to hear that you’re having these challenges, keep battling! I hadn’t heard of Avastin so had to consult Dr. Google, but do have some experience with swelling and steroids. I was fortunate and only needed steroids post bleed. I had some swelling after GK, but not to the extent in needing to use medication beyond the “simple” stuff to manage the discomfort. Have you looked into, or discussed, any alternative therapies to compliment the medical side?
Whenever I hear brain swelling post radiation treatment, I think of some folks here who have had some real success with the hyperbaric chamber. It may be worth looking into and discussing with your dr. You would need to be sure it wouldn’t interfere with the current treatment plan. A thought as I know it has provided some relief to others. We are all so different however, yet have a lot in common, but I find that there is no blue print fix all for any if us. In the medical world that refer to it as the temporal recommendation, although there seems to be great movement to a more integrative approach which will be better for all of us.
Just my thoughts, but may be worth a look. Wishing the best to you, John.
I’m so sorry you are having to deal with this! I had a stage 4 AVM in my left parietal, occipital, and motor cortex lobes that was obliterated via GK back in 2009. I had a truly horrible bout of radiation necrosis in 2012 that didn’t respond to steroids but did respond to hyperbaric oxygen therapy. They were going to try Avastin but fortunately the HBOT cleared things up. Unfortunately radiation necrosis is the gift that keeps on giving - I’m dealing with another reoccurrence now and completed another series of HBOT July 2023. The MRI after 35 treatments showed a lot of improvement so I did 60 all together this year. I go back for a follow up MRI in 2 weeks. I’m encouraged that your experience with Avastin wasn’t too bad - neurosurgeon says that’s next for me if the HBOT didn’t heal it up this round. Hoping you continue to improve on the Avastin. A lot of people have had good results with HBOT so you might want to ask about that too. Best of luck!
Thank you John! My doctors did mention hyperbaric oxygen as an option, but it wasn’t discussed too much. I’ll have to look into it and ask them about it more. Hopefully the Avastin does the trick, but I figure it doesn’t hurt to be prepared if it doesn’t. Or, if like you said, it could maybe compliment the treatment. Thanks again!
Hi Jessica, thanks for sharing your experience! I’m sorry you’re dealing with a recurrence right now, I hope the HBOT does the trick again for you. I’m going to have to look more into HBOT, it was mentioned briefly to me, but once it became apparent that the steroids weren’t working very well my doctors went right to Avastin. That’s so interesting that you went in 60 times for HBOT! I need to do my research, and I’m not sure if you know, but is that a typical number for those of us dealing with radio necrosis? Wishing you the best with your treatments!
I’m in Seattle, and did my HBOT in the multi chamber at Virginia Mason Hospital. The standard for radiation necrosis is 40 treatments. If scans show that it’s healing and if you tolerate the treatment, then they will apply to insurance for another 20 treatments. It was kind of like a mini support group for radiation necrosis when I was there. The multi chamber was nice because you are sitting in a hospital recliner in a space (half cylinder) about 20 feet long and 7’ diameter. They pressurize the space, and you breathe pure oxygen through a hood or mask. Kind of like a section in an airplane with room for 8-10 patients. I’m not sure I could have coped with the single chamber which is the size of an MRI tube. It’s definitely a time commitment but fewer side effects for most people.