Delay treatment?

Posted By
dmarie
1/2/2018 12:00pm
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Replies: 8

My husband was dx in late August 2017 (craniotomy to remove largest of 13 brain mets - quite a surprise!) He has been on Taf/Mek since September, and has almost no side effects, and has been having mixed results - many tumors have decreased in size (lungs, liver, lymph nodes and some in brain), but others have stayed the same (brain & femur), and "some" new ones have popped up in his brain (small still). He will have another MRI at the end of January to see where the brain lesions are, and then will (probably) be recommended to have whole brain radiation followed by immunotherapy (not sure what drugs, though). We are of the thinking that Gamma Knife is the way to go, to reduce necrosis and cognitive deficiencies that could result. 

He feels great and is asymptomatic. He has adopted a mostly plant-based diet (some fish and eggs, but otherwise vegetables only), and believes that this has helped him.

We are considering going on a cruise soon, while he feels well (and has hair), not knowing what the future holds. IF we did go away, it would be sometime between late February and mid-April. We have two middle-schoolers, so need to consider their schedules. I am concerned that delaying treatment could be detrimental. We are still pretty new to this beast, and I wonder what those of you who are more experienced would do.

Thank you.

doragsda - (1/2/2018 - 2:35pm)

You may not need to delay treatment.   My wife had gamma knife on two areas in her brain on August 9, started immunotherapy (Opdivo/Yervoy) in early September, and we went to Hawaii for a week on September 30.   They timed the start of the immunotherapy so she wouldn't miss a treatment while we were gone.   It was a great trip with no problems.

dmarie - (1/2/2018 - 3:02pm)

Thank you for replying, I so appreciate it. Not to be too personal, but did she have fatigue after gamma knife? Did she lose her hair? I am concerned with his energy level afterward, and he is very concerned about losing his hair. (I wish it didnt' bother him, but it does). 

doragsda - (1/2/2018 - 3:34pm)

She spent the day after the gamma knife procedure in bed resting with a little nausea, but bounced right back and was back to normal in another day or two.   She had one spot on the back of her head, about 2 inches in diameter, where she lost her hair, about 30-40 days after the procedure, but it grew right back in.   That area was where a number of the gamma beams overlapped, as they had to use 8 separate shots to irradiate the resection cavity where she had had her large tumor surgically removed - they hit the entire perimeter to kill any remaining tumor cells.   A PET/CT of her brain last week at Angeles Clinic shows no live/active tumor cells in her brain (or anywhere else).   The resection cavity shows no activity and a separate 10mm tumor site has shrunk to 3mm and does not show any tumor activity - all dead tissue.  She has a small amount of radiation necrosis right under where the hair loss was, but they're going to treat that with Avastin.   She is 55 years old and in otherwise excellent health.

cancersnewnormal - (1/2/2018 - 4:17pm)

Personally, I'd shoot for that gamma knife rather than whole brain if avoidable... for all of the very reasons you mentioned. When I was initially diagnosed stage IV (brain and lungs), we opted for gamma over WBR, not only in an attempt to avoid potential cognitive issues, but also to get the ball rolling on systemic treatment sooner. WBR is typically a 10-14 day treatment... and yes... there is a chance of hair loss. Gamma is outpatient with a "two day" recovery. Immuno drugs can be started very quickly afterward. Over the stretch of a couple of years, I had a total of 10 rounds of gamma. A few of the times, I left with a wicked headache (migraine like) and some mild nausea.... and a few times, I bounced right on out the door after mowing down a hospital lunch or dinner. I never did loose any hair, though I think it was listed as a possible side effect... more specifically "thinning" was mentioned. The bigger concern for planning a vacation would be how he feels after any new medications begin. Some of us do rather well with the anti-PD1 drugs and/or Ipi... some have a whole world of issues. Take care of the brain for sure though. Priority number ONE is getting it out of his head. On a side note, brain lesions take a little time to go away... even after radiation. Some of mine were gone within a month or two... others took a year, and I had one that stuck around for almost 2 years! As long as they aren't causing neurological problems, he should be ok to go for a family trip. Definitely something to bounce off of his radiation oncologist though. Aaaaaand... if you're going too far from home (out of country)... look into travelers health insurance. 

dmarie - (1/11/2018 - 11:51am)

Niki, thank  you. I totally agree that SRS is preferred over WBR. I just hope that his rad onc will see it that way too. 

I was hesitant on pulling the trigger on a vacation, and now so glad that I was. He learned yesterday that he is being laid off in a month. So now to try to get treatment lined up and done before insurance ends. 

Diane

kst - (1/11/2018 - 9:03pm)

I don't believe his treatment will be over before insurance ends,  Start researching insurance now-Cobra is expensive but usually better than ACA .  Yearly treatment costs for melanoma can wipe out even a wealthy person's savings between surgery, radiation and immunotherapy.

Bubbles - (1/2/2018 - 8:34pm)

Sorry for what you and your husband have already been through and are facing.  Studies show that if it is possible gamma knife (or SRS) is both more effective and less damaging in melanoma than WBR is.  Additionally, we have also learned that that sort of radiation COMBINED with immunotherapy provides greater effect than either alone.

Here is a post I put together about melanoma treatment generally:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/08/melanoma-intel-primer-for-current.html  

Here are many posts regarding immunotherapy AND radiation:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=radiation  

Hope this helps. I wish you my best.  Celeste

dmarie - (1/11/2018 - 11:48am)

Thank you for all this great information. I so appreciate it! 

Diane