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October 24, 2012 at 12:58 pm #20705
I had SRS radiation on a 1cm tumor June 14th. Since that time the tumor has slowly increased in size. Doctor was hopeful it was just reaction to radiation and swelling would go down. Just found out yesterday it continues to grow. Oncologist, radiologist and neurosurgeon all consulted and feel best plan of action is to remove it before it gets too big to cause problems. I currently have no side effects at all from it. I have also developed a small tumor on the other side which they will radiate once I recover from surgery.
We meet with neurosurgeon tomorrow to discuss craniotomy I appreciate any thoughts or questions I should be asking.
My oncologist feels we need to move agressively to get brain under control so we hopefully can move on to a PD-1 trial in future. I do have tumors in lung,liver and adrenal they have shown small slow growth so far since my ippi treatment which ended April 5. I also have developed small tumors on neck, arms legs etc.
I am having surgery done at Mass General .
Thank you for any input.
laurie from maineOctober 24, 2012 at 2:45 pm #57103marta010Participant
Hi Laurie – my husband also had a brain tumor treated by SRS in March 2012. The tumor shrunk slightly and after he went months without any issues we thought we were done with the brain issues and could focus on immunotherapy options. Unfortunately, after receiving radiation treatment on his lymph nodes, he started experiencing edema in his brain from the tumor and had a craniotomy to remove the brain tumor last month. Turns out the tumor was necrotic but still irritated by the radiation which resulted in the edema. In hindsight, we’re thinking that if he had gone with the craniotomy in March, we could have avoided the delay caused by the edema. The recovery from the surgery was smooth – he’s mainly dealing with the side effects of the steroids he is taking. Regarding the surgery, our concerns/questions for the surgeon were tumor location and depth, potential impact to motor skills, language, etc., recovery time in hospital, need for any follow up treatment like whole brain radiation, SRS,etc. Post surgery, my husband was in ICU for one day and in the regular surgical ward for another day – only three days in the hospital including day of surgery. Good luck to you.October 24, 2012 at 11:21 pm #57104 Hi Marta,
Thank you for the reply That helps a lot to hear how quickly your husband recovered and got out of hospital. I have heard the steroids are the part that bother people the most. Has he been able to start immunotherapy yet?
Thank you again, I appreciate your help
laurie from maineOctober 25, 2012 at 7:58 pm #57105marta010Participant
Hi Laurie – no, he hasn’t started immunotherapy yet. I think his dr. wanted him to fully recover from the surgery and, more importantly, get off the steroids. His next PET scan and oncology appt is in mid November so we should have a better idea of the game plan then. Best wishes.October 28, 2012 at 1:58 pm #57106 Hi Marta,
The waiting is the hard part, I know nov is just arond the corner but I imagine you both just want to move forward and get your new game plan Do you think you might be able to get into a pd-1 trial?
I go tomorrow for craniotomy thank you for help.
We did find out I have another 1cm brain met on other side. Surgeon said this one was trickier and he would suggest I do radiation first and then if swells like first one they would operate It was such a long wait between radiation and then the watch and wait period for my first brain tumor. i am not optimistic about the SRS on the second one and am scared that if we radiate and then have to do that watch and wait period to see how swelling does it will just take too long. surgeon feels that operating on second one might effect my motor skills on right side so that is why he suggested radiation first.
I thought you were also feeling you wished you had done craniotomy earlier to move things along ?
thank you again for your help. Wishing/praying you get great news in nov and can move forward
laurie from maine
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