brain mets

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4/4/2014 3:54pm
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Replies: 8

ive been stage 4 metastatic melanoma for 1-1/2 yrs -first on zelboraf for 6 months then when it decided to stop working -went to dana farber  in boston to get put on pd1 trial Merck .have been doing quite well on that since july 2013  -all  of a sudden started getting headaches -went for mri  found two brain mets -currently am waiting for the drs at dana farber and merck to hash it out and see if they will let me stay on trial ....praying alot that they will ,as this is my best hope

my question is has anyone had these and what did they do about them ? i have been told locally that they could do cyberknife but boston says srs  and then they were talking about surgery on the frontal lobe lesion and radiation for the one in cerebellum .i need to hear something positive so i can make an informed choice and not just go blindly along . thanks for any in put  -this is freaking me out a little although i try to stay positive ..thank you

 

kylez - (4/4/2014 - 5:57pm)

I had several brain tumors (5) over the course of 2010-2011. I was treated with surgery twice (craniotomies) as well as 2 different types of SRS at 2 different times (CyberKnife once, Gamma Knife once). So far knock on wood the brain has good since. I also got IPI after the 2nd craniotomy+radiation.

In my case, both times that my doctors here on the west coast (who I trust and are at a highly rated facility) told me I should have a craniotomy, I did. I did get a second opinion for the first craniotomy.

If you want a second opinion on DF, the neurosurgery program at MGH is very highly rated. MGH also has a proton therapy machine, which is another alternative to Gamma Knife and CyberKnife.

I hope whichever course of treatment you decide on that you'll be able to stay or get back on the PD1.

- Kyle

thank you everyone willing and able to post non-anoymously, it helps add to the sense of community!

Anonymous - (4/4/2014 - 6:40pm)

I am so sorry to hear about your 2 rain mets. I have not heard of anyone who was responding to pd1 then have brain mets when on pd1. Did you doctors confirm to you that anyone else on Merck pd1 got new brain mets while responding on the Merck pd1 drug?

I think that your choices whould depend upon the size of your mets and where the mets are located. How are the sizes of the brain mets? Where areyour brain mets located?

Good Luck & please  keep us posted on Merck decision to keep you on the trial.

dsfarms13108 - (4/7/2014 - 11:15am)

i had measurements of l cerebellum 2.6 cm and rt frontal 4 mm  the drs say these are small so thats good but they said they wanted to radiate the  cerebellum and the do surgery on the frontal one .am scared and  unsure

they also said they havve seen a few people in study that have had pd1 work well on the body tumors then show up in the brain .

 

Anonymous - (4/7/2014 - 12:11pm)

Were these patients kicked off the trial...I so hope that you get to stay on the trial. When will you know if you can stay on the trial?

Did your doctors indicate whether or not PD1 help kill the brain mets. I hope PD1 works on Brain mets?

kylez - (4/7/2014 - 1:44pm)

Each time I had surgery to remove tumors, my neurosurgeons warned there was a 5% complication rate. I was definitely happy going for the surgery. A total of 3 resected tumors in 2 craniotomy procedures (one was a double). The ones resected were between the size of your frontal lobe tumor and 3.5 cm. At Kaiser they got me into surgery about 2 weeks after detection. At UCSF they did better -- 1 week! I was so happy feel like they had gotten that stuff out of there. I felt that time was of the essence, epsecially the second time as I was more experienced with brain tumor issues. Knock on wood they haven't seen anything in my brain since 2011. 

- Kyle

thank you everyone willing and able to post non-anoymously, it helps add to the sense of community!

Anonymous - (4/4/2014 - 7:20pm)

I hope that you can stay on the trial.

Have your doctors at Dana Fiber told you that Merck PD1 drug will help kill your brain mets. Has there been any Merck reports that state Merck PD1 drug is effective with killing brain mets.

I would be interested in knowing has anyone had ACTIVE brain mets on Merck Pd1 trial and the brain mets did respond=shrink/kill  brain mets while on Merck Pd1 drug.

kylez - (4/4/2014 - 11:23pm)

Like another poster above said, location and size are major factors, making each case almost unique. For me they ended up doing surgery for some (followed up with radiation to the surgery locations afterwards), and radiation only for 2 others.

thank you everyone willing and able to post non-anoymously, it helps add to the sense of community!

jend33 - (4/9/2014 - 3:05pm)

I am so sorry to hear that. My husband has stage 4 ,also has brain mets . They did whole brain radiation first then went to zelboraf. God that was great we could actually see some of them shrinking.The zelboraf just stopped working2 weeks ago. He just had scan and most of them are gone or very small except he just got a new one, I feel like we are just cant catch a break. We are waiting for insurance to approve ipilumimab. Dr wants to do pd1 but we have to wait until it comes out fda. They never gave us option of surgery because of location and to many. I hope everything works out for you. Please keep me informed on pd1 he also has multiple sclerosis so he wont qualify for any trials. We are willing to try whats wver available. Even with certain risks we dont have any other option .I camt loose my best friend and husband of 23 yrs. I sincerely wish you the best.
Jen

Jennifer Danko