But some patients reported missing face-to-face contact, study found
by devonnajm on Thu Jan 15, 2015 09:00 PM
My husband was first diagnosed with an egg size stage 2 oligodendroglimo in 2005, followed by surgery in early 2006. Thankfully, all the tumor was removed and radiation/chemo was not recommended. With 6 month MRI's, it was discovered in 2010 that he had another marble size tumor which was also surgically removed just like the first. Fast forward to 2014. He just had the 3rd tumor removed, but this time it's stage 3 with some webbing remaining. His surgeon (same for all 3 tumors) recommended radiation/chemo this time. Has anyone ever used proton radiation therapy as treatment for this type of tumor and what were your results? We are getting conflicting information from his surgeon and the neuro oncologist.
by MrBrightside on Tue Apr 26, 2016 03:24 PM
You posted this a while back but I just saw it. I also have an oligodendroglioma grade 3 and I just completed proton radiation treatments.
It seems like your husband and I are in similar situations but he is 5 years ahead of me on his timeline. I was diagnosed in 2010 with an oligo grade 2 (left frontal) and had surgery to remove it and no follow up chemo or radiation immediately after. Just routine MRI's. No change until early 2014 when growth started to occur again in the same location. I did 11 months of Temodar finishing in December of 2014. The growth stabilized, possibly some minor shrinking, but overall nothing overly successful with the treatment. My doctors decided to monitor with routine MRI's again. In July of 2015 I started feeling very run down and not very well. I ended up having a double gran mal seizuire which put me in the hospital for a couple days. MRI showed nothing obvious and a follow up MRI was scheduled for 3 months. After 2 months, my concentration and memory started to tank and we moved up my MRI which showed growth again. I had my second surgery to remove in December 2015.
Pathology of the second surgery revealed my oligo was now a grade 3. Radiation was recommended. Three people I know recommended that I have a consulation at MGH in Boston on doing Proton radiation there instead of standard radiation at my hospital. I ended up doing it and just finished 6 weeks of proton treatments a couple weeks ago and have a follow up MRI this Friday. They are likely going to recommend that I start a PCV chemo regimen at that time as well. The treatments went fine. The staff there was very good. Side effects were basically fatigue and hair loss in the area.
When I inquired for more information on proton therapy with my current doctors at the hospital that has done my surgeries, they did not give me specifics on it and said if interested I should go meet with the staff at MGH to discuss. While they did not give an opinion outright, reading between the lines in the way they spoke to me made me believe that if it were their own personal situation that they would also be considering it. Just call it a vibe they gave off. They said nothing negative including the radiation oncologist. My neuro-oncologist did give me a referral to go to MGH and that has been helpful with exchanging medical records, MRI results, etc.
Please feel free to send me a message directly over this website to share more information. Your husband is probably the closest match to my situation I have found so far.
When you track a discussion, you will get notified by e-mail if anyone else posts a new message on this discussion. Are you sure you want to track this discussion?
If you stop tracking this discussion, you will no longer get notified by e-mail if anyone else posts a new message on this discussion. Are you sure you want to stop tracking this discussion?
We care about your feedback. Let us know how we can improve your CancerCompass experience.