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August 28, 2015 at 11:48 am #22607
Yesterday, I found out that my father has brain mets, for the first time during our fight with melanoma. Doctors can’t see him before next Wednesday, and then they will give their opinion on the subject and treatment options – they told us they will consider gamma knife if possible.
I know that gamma knife is for smaller number of metastases(up to 6), and he has 4 significant, sizing 3-5mm, and I guess it would be suitable. But he has many small ones, which are now not a problem but they could be, and I am not sure how that will be handled.
If anybody has any experience or advice regarding brain mets, please let me know. Regarding other therapies, he was on Zelboraf for 6 months, but stopped it a week ago as it was not working anymore, and we are now looking for further options.August 28, 2015 at 4:53 pm #67675AnonymousGuest
So sorry to hear this news.
If your Dad is in the States and has not had IPI or PD1, he may qualify for the IPI/PD1 trial for brain mets that Catherine references below.
BTW, 3-5mm is still a small met for the brain and 2-3mm is right at the limit of detection for MRI. Does he have any neurological symptoms?
Also, IMO, don’t let them talk you into whole brain radiation until you get a second opinion.
Hope this helps a bit.
JeffAugust 28, 2015 at 6:18 pm #67676
It helps a lot, thank you, those small hints are most important things for me to know in this moment. I also heard that whole brain radiation is not so good, and I needed confirmation on that, my idea was to do it only as last resort.
Luckily, he does not have any problems currently, this results were something unexpected, he did that MR check because he has not done it since January, doctors were telling us it was no necessary.
We are not from U.S. unfortunately, we are from Serbia, and it is not even in EU, which makes things more difficult.
For now, our plan is to get antiPD1 as soon as possible(although we might need one shot of Ipi to become eligible for antiPD1), and to put in control those bigger brain mets.August 28, 2015 at 6:32 pm #67677Catherine PooleKeymaster
Yes, more small brain mets can be gamma knifed, you just need more sessions to do it. As Jeff pointed out, WBR (whole brain radiation) is not a great option and can be debilitating. Let me double check that trial for locations since you won’t be able to enter other ones until the brain is stable.September 3, 2015 at 11:41 am #67678 We made an appointment to do gamma knife on Monday at Acibadem clinics, Istanbul. Doctor Selcuk Peker told us that everything will be done in one session, so we will see how things will go, but it seems promising. We might also get some problematic bones radiated there, after consultation with doctors.
When we finish everything, I will post an update, maybe it will be useful for other European patients(although I hope nobody will need this treatment).September 3, 2015 at 2:55 pm #67679GillyParticipant
I hope the Gamma knife goes well and please do post updates for the MANY Eastern Europe patients who have few options !September 5, 2015 at 12:10 am #67680
Attached is a very comprehensive article on brain mets and therapies I thought would be helpful to youSeptember 5, 2015 at 12:12 am #67681
Sorry I think it was stemat that started the thread on brain mets…September 5, 2015 at 11:42 am #67682 Yeah, I started the thread, thanks for the article, I am reading it now!
OFFTOPIC: I will just post altered link to this article, as it seems that your session token was contained in link you posted, and when I open article it prompts me to login with your username and asks for password – you didn’t do anything wrong of course, their website is not handling some things properlySeptember 6, 2015 at 12:37 am #67683
Thanks for putting proper link in..i thought it was a good article and hope it helpsSeptember 9, 2015 at 1:37 pm #67684 Last couple of days were extremely dynamic for us, and today we can finally rest a bit, as we did everything we planned to do in Istanbul. Today, my father received Ipilimumab, we managed to do it here, and although it is too early to speak, so far everything is going good, and he tolerated it without any problems.
We also did gamma knife on Monday, it was successful and I think that doctors really gave their best as they treated 12 mets in one session, which lasted more that 3 hours. Although we came here thinking that he has only 4 bigger ones to be treated, their MRI which is probably much more precise than the one in Serbia showed that condition is a bit worse that we were expecting. Everything regarding the procedure went smooth, we were released from hospital 2 hours after the operation was finished, and my father did not have any problems, he was even feeling much better right away.
However, there is always the other part of the story – my father still has at least 15 small metastases/micrometastases which are currently not causing any problem, but are potentially really dangerous. That is why doctor told us to do WBRT as soon as possible, and I felt devastated after hearing that. He also advised us to do it in Belgrade, as the quality is same and it would be free of charge for us there, he was also pretty serious and worried, so I believe that he honestly thinks that WBRT is necessary. We had a really good plan few days ago, but this setback has really put me down with my hopes.
Treatment at Acibadem was very good, we had translator/organisator who was always with us when we were at hospital, people there are very helpful and professional, and we really felt we are in right hands. Only thing is that not everyone speaks English – in case, only small percentage of them does, but having translator, it was not a problem.
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