brain mets feeling defeated

[mazz75]

Dear Catherine

My sister had 2 brain metastasis surgically removed 1 month ago, yesterday she got the results of the MRI and full body scan. Body scan all clear but brain MRI shows 3 new small lesions in just one month. We are going nuts , how could this happen in just one month?. This terrible disease is driving all the family crazy.

Following the advice of the melanoma team at Royal Marsden London She will have whole brain radiation for 5 sessions starting from next Monday, than a break to get back her strength and she will try yervoy.

Does the radiation kill the tumors?

[Catherine Poole]

I’m so sorry to hear this news about your sister. I would highly suggest you watch our webinar on brain mets by the neurosurgeon from Yale, Veronica Chiang, she is excellent! Here is the link: http://melanomainternational.org/webinar/2012/01/radiation-treatment-in-brain-metastases. If these are small, then I would insist on stereotactic not whole brain radiation. It is much more pinpointed and less damaging than whole brain. Hopefully this will take care of the mets and you can move on! We’ll be thinking of you and your sister.

[gostan]

Dealing with recurring multiple brain mets can be a difficult emotionally daunting task – for sure. I went through two SRS treatments for singular mets and then 8 or 9 showed up, that resulted in a two week WBRT program. Two weeks after, I had the first of two Yervoy (IPI) infusions. Unfortunately, I had to stop them due to colitis side effects. But three weeks ago, I had my 8 week post radiation follow up scans and my neurologist gave me the wonderful news that the combination of the WBRT with immediate follow up with Yervoy, had obliterated the multiple brain mets. The radiation works, but the Yervoy , which for me, passed the brain blood barrier & worked in combination with the radiation, provided simply amazing results. Here’s hoping that your sister has similar results.

[mazz75]

Hello Catherine and Gostan

Thanks for replying to my mail.

Catherine they said they wanted to go aggressive since the 3 new mets appeared in just 4 weeks. Next Monday she has her first radiation appointment. I just hope brain radiation is not painful and she does not suffer permanent damages and yervoy does the trick afterwards.

It’s so hard to watch her suffer and being able to do nothing just waiting.

Gostan I am happy for you finally you are taking a much needed break and you can spend the holiday season with your family, unfortunately for us it is not the case. She will still be away for treatment and I cannot fly near her as I am pregnant.

How did Brain radiation go? Was it hard and painful?

[gostan]

The brain radiation is not painful at all. My two week regime was pretty stressful and very tiring. the tiredness continued for almost 8 weeks after completion of the radiation and I am stiIl slowly regaining my strength. Luckily, i had no short term or other memory issues. It is scary for sure, but the radiation will help deal with your sisters’ multiple mets. My prayers go out to your sister and your family.

The reality of stage 4 melanoma for most of us is that this battle is like a relay race, and the treatment baton is always either in one of our hands, or really close by. My post-IPI 4 week scans on my systemic leisions are this coming Wednesday. I will find out whether I can give the baton a rest, or keep holding it, or if I need to get in line for the next new treatment.

[mazz75]

Dear Jostan

I,m relieved it’s not painful thanks for letting me know.

I like your fighting spirit please keep this attitude and never give up.

My sister is also a fighter and I do admire her a lot I know she is scared at times but she’s always with a smile.

I am happy for you that you did not suffer any memory loss , I pray that you will regain your strength fast and your results are great.

I will let you know how it goes this week .

Maggie

[PatW]

Maggie, I am sorry that your sister and your whole family has to go through all this. It’s a difficult road to travel.

Catherine is right– stereotactic radiosurgery (Gamma Knife or Cyber Knife) is much more focused and less damaging to the brain than whole brain radiation. However, I also understand that with so many new tumors popping up so quickly, who knows how many others are already growing but just too small to see yet? So WBR is certainly a valid option.

My brother had WBR. It does not hurt (except sometimes an area like sunburn on part of the scalp). It does make one feel very fatigued for several weeks. Like every other melanoma treatment, it doesn’t work for everybody and it doesn’t last forever. My brother had some short-term memory loss (he couldn’t remember the password for his online banking, for example) but mostly he was fine.

As GoStan said, there are some reports that taking Yervoy immediately after radiation can be very effective. The theory is that the dead melanoma cells provide a lot of material for the immune system to recognize and attack, which makes the Yervoy work better than it might otherwise. I don’t know if there are any actual studies published about this effect (perhaps Catherine does) but I have heard several patients say it.

Good luck to you and to your sister!

[Alicia]

I second Catherine’s recommendation to try stereotactic instead of whole brain radiation.

Please research the side effects from WBR carefully, these can appear some time after the treatment and be devastating.

I had two brain mets in a short period of time that were successfully treated with stereotactic radiation. At that time, WBR was offered as an alternative but I decided not to do it.

It has been more than 8 years and I am doing very well.

Best wishes,

Alicia

[mazz75]

Thanks Pat I hope your brother is doing well and enjoying life.

Alicia I read the side effects and I agree that they are not nice to deal with at all, but I have read and seen what melanoma can do , and I agreed with the doctors at Royal Marsden to aggressive.

This is a terrible disease and only few make it.

Even if with the new advances made , I sometimes dare to hope she will be ok.

She is only 28 years old and it is terrible to see her suffer this way.

However someone like you Alicia makes me believe that there could be a future for her.

Thanks for your post and for lifting my spirits. I hope you live a long healthy, happy life.

[EricW1]

Hi all,

Here is a good read on immune plus radiation….my wife will begetting srs on one met and a reintroduction of ipi following the treatment….hoping for that abscopal effect!!!

[EricW1]

helps with a link…

http://www.hindawi.com/journals/bmri/2013/658126/

[NYKaren]

I had gamma knife twice…

Since I ALSO had Ipi, I know that you’re allowed up to 7.5 mg. of prednisone/day…recovery time for gamma knife is next to nil…If my procedure hadn’t been so late in the day I would have gone to work the very next day.

Just an idea to think about.

Good luck, please let us know what you decide!

Karen

[mazz75]

Hello Karen

I read your posts on Mpip also, I am pretty impressed by your profile.

Not easy choosing between treatments and since she is so young she opted for the most aggressive.

She started last Wednesday and she is having nausea and is feeling very tired. She has two more sessions to go and hopefully its done, After she will immediately start Yervoy. Hope it does the trick and keeps this terrible disease at bay forever. I hate this disease with all my heart -(

I pray that Anti pd1 is on the market very soon but with these big pharmas you never know.

Best wishes for the festive season

Maggie

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