My wife possibly has do undergo wbrt shorlty due to new Mets appearing on latest mri. We are both very concerned and was hoping some of you might be able to share your experiences of treatment both during and in the following months. Thanks
Is there a reason you are not trying something like gamma knife radiation first? My Mom has so far had positive experiences with gamma knife radiation. WBRT was offered to her, but we felt GKR was the preferable option.
Here is a recent post I replied to: http://www.melanoma.org/find-support/patient-community/mpip-melanoma-patients-information-page/brain-mets-and-yervoy-success
Hi the reason whole brain is being considered is that the latest mri showed several small (2-3mm) tumours, more than 5 in number,hence why I think stereotactic radiation is not considered the best course at the minute. I did suggest this but due to the number and seemingly fast pace of progression wbr was considered the best route.
I'm a little late to the party, but I had to undergo WBR about a year ago when they found 7 small mets (similar in size to the ones you describe) and some possible leptomeningeal disease. The number of mets and the possibility of leptomeningeal disease more or less knocked the targeted radiation therapies off the table and left me with just WBR as an option. I started Yervoy at the same time so it's a little hard for me to separate what side effects came from which treatment, but I can tell you that I did 3 weeks of radiation and my hair fell out completely at the start of the 3rd week. I had some fatigue and some nausea, but again I'm not sure how much was the radiation and how much was Yervoy, but neither was too bad (though I did get a script for anti-nausea medication). One thing I would bring up if it hasn't been discussed already is for your wife to be placed on an alzheimer's drug (I was on NAMENDA) for 6 months or so starting around the time she starts WBR. It helps combat the mental side effects that can occur (memory loss, trouble with word finding, etc). I took it for 6 months and really didn't notice anything while I was on it. After I came off the drugs I had some very mild trouble with word finding (especially when I was tired). I wasn't working at the time and wasn't challenging my brain very much, but as soon as I went back to doing something mentally challanging things improved greatly. My ear canals got burned by the radiation (like a sunburn inside my ears) and that was really uncomfortable for several weeks, interfering with sleep. My doctor gave me a cream to use on them that helped a lot. My hair didn't start to grow back for about 6 months. For me the radiation was completely successful and none of those original mets have regrown. Unfortunately I had 4 new mets pop up 6 months later (I failed Ipi miserably) and did Gamma Knife (though they decided to only treat 2, the other 2 were too small). Then 4 months later the 2 untreated were joined by 7 other tiny mets, all of which were treated with Gamma Knife at the end of May. I'm not quite far enough out from that to know what the result is, but I've never had any symptoms from any of the mets I've had and I'm taking that as a good sign. I'm now on the Merk PD-1 EAP so hopefully I'll stop growing brain mets. Things to keep in mind going forward though- be vigilant with follow-up scans so you can catch anything new while it's small and easy to treat and none of my treated (with WBR or Gamma knife) have regrown- they've all been in new locations, so radiation can be effective (at least for me) but it doesn't mean you can forget about brain mets when your done.
Best of Luck to you and your wife.
Thanks for sharing your experience, it is much appreciated!
If this online community is valuable to you, please consider making a tax-deductible gift to support the MRF.
-View the Melanoma Patient Guide
-Questions to Ask Your Doctor
-Email the MRF Nurse
-Get matched with a Phone Buddy
-View the Melanoma Glossary
Meet and talk to others about melanoma in our forums:
See also: History of the MPIP Forum
–Ocular Melanoma Forum
Get updates on melanoma research, education & advocacy
RIDE through Sunshine Canyon (multiple times!), ROCK out at a concert after the ride and RALLY with other melanoma advocates in the iconic foothills of the Rocky Mountains!
Conquer melanoma and Ride. Rock. Rally. in Sunshine Canyon!
1411 K Street, NW Suite 800
Washington, DC 20005
(800) 673-1290 Office
(202) 347-9678 Fax
The Melanoma Research Foundation (MRF) is leading the melanoma community to transform melanoma from one of the deadliest cancers to one of the most treatable through research, education and advocacy.
The Melanoma Research Foundation is a 501(c)(3) non-profit organization.