Brain Mets

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11/4/2011 2:32pm
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Replies: 22

Was told today I have 2 small mets in my brain.  I know this is devastating, but I would prefer people not to make me feel how horrible this is. Yes, it sucks, but there are people on this board who've had or have brain mets and are still here.

Gamma Knife is not in the cards for me considering 1 of them has already bled. They're both in very good spots in the brain not causing any problems right now.  Because I'd have to wait a month for the bleeding to absorb, they suggested WBR and then Gamma Knife. I know people have been very against this treatment, but I was told that most younger people tolerate this treatment quite well and only 1% of people get severe side effects.  The goal is to start WBR next Wednesday for 10 days in a row and then if they're still there, they'll be able to gamma knife them out of there. Apparently there is just above 80% chance of eliminating the tumours and possible mircroscopic cells. I know nothing is guaranteed, but I'll take these odds at the moment. I know many people have had success from gamma knife (SRS) so WBR should also prove successful. IPI and radiation could continue to keep the brain mets from coming back for a while - you just never know.

Yes, I'll lose all my hair, but they have some pretty divine wigs!  I have read on this board that people who've had brain mets are still hear - some years later, some working, etc, etc. There is always hope and I'm not giving up!  I still feel fantastic and I'm happy that I'll still enjoy life going through radiaion.

Anybody done WBR which kept the mets away for a while??  I know lots of you have had gamma knife which has worked, so that's a great thing!!

Lisa

Many impossible things have been accomplished for those who refuse to quit

justlittleoleme - (11/4/2011 - 2:40pm)

Lisa,

Sorry to hear your news but happy because you seem to have a great attitude.  Attitude equals altitude!

You fight girl with everything you have!

barb

We don't know how strong we are until being strong is the only choice we have.

Phil S - (11/4/2011 - 2:48pm)

Lisa. Sorry about your news, but just so you know my husband has two days left of his WBR, and has done very well. No real side effects, except a little tired. It's scary but once you are in the middle of it, totally doable! Five minutes a day, and you are done! Keep the faith, and take one day at a time, read KatyWI recent post on WBR, another warrior that managed well during WBR treatment. God bless, Valerie (Phil's wife)

nikolaos - (11/4/2011 - 2:49pm)

Hello to everyone. Lisa i do not think that news are that devastating as you may think.. I have heard of stories from people that have good responses from ipi to develop some brain mets. Since ipi keeps melanoma under control it is likely that the same will happen in the brain so hopefully it takes care of microscopic cells that may be there.. Apart from that, even if it does not happen so it stops new brain mets to form and you can take care the remaining ones with gamma knife. I have heard somewhere that melanoma tends to grow in areas where it is has better potential to develop, so the brain mets may guarantee that you have very good response from ipilimumab..

The most important thing at your situation is that you have responded guide well to ipilimumab. Concerning WBR i know that is not so affective on melanoma cause it is radioresistant but you may give it a try.. I do not think that you will have any major symptoms apart from the fact that hair falls, but it is okay they will grow back.. I wish you everything good.

jmmm - (11/4/2011 - 2:56pm)

My hubby was just dx with a huge brain met two weeks ago. His dr. Put him on Zelboraf...not sure if you're brag + or not. His dr. Has seen it work in brain mets. If it doesn't work, he'll have to make the choice of a craniotomy or WBR followed by gamma knife. Like you, we're shocked, but hopeful. Hang in there!

jmmm - (11/4/2011 - 2:56pm)

My hubby was just dx with a huge brain met two weeks ago. His dr. Put him on Zelboraf...not sure if you're brag + or not. His dr. Has seen it work in brain mets. If it doesn't work, he'll have to make the choice of a craniotomy or WBR followed by gamma knife. Like you, we're shocked, but hopeful. Hang in there!

glewis923 - (11/4/2011 - 3:00pm)

Dear Lisa-  I have/had (I think a few are still alive but stable) 12 to 14 brain tumors-  all but 1 or 2 below 1 cm in size.  I had 7 SRS'ed (Novalis TS) and then had 10 days WBR.   This was back in February.  Only having 2 would be a blessing to me!   Aside frow surgery- and that may be an option for you? - I would not hesitate for a moment to have WBR.  It's probably why I'm still "here" 10 months later with no significant growth and no new ones as of last MRI (Oct. 1st.) 

Only problem was a large edema that started causing bad headaches in late July- treated with steroids and all better now.  Also, I  did complete "round "  of IPI/Yervoy March thru May. (see my rescent post below).  Bottom line- and this is ony MY opinion- but I would not hesitate one moment to do both WBR and SRS   I have not forgotten my name and such. Some people on this board may disagee with me, and reccomend that only having 2 small tumors and doing WBR would be "overkill",  but I would do it- we are talking life and death here.  In my situation I felt I had to "throw the book "  at the evil tumors.

Best of Luck and Prayers-  Grady.& Family.

I'm Here for Now, I've got the rest of my life to die; and if so, old age could be overated and God does exist.

Lisa13 - (11/4/2011 - 3:15pm)

Thanks everyone!

Grady - I would only be doing SRS if the 1 tumour hadn't already bled. They can't see it to zap and need to wait til the blood absorbs, but why wait a month for this to happen? This is why the WBR is the best choice and I agree with you - doing whatever needs to be done is #1 for me!

It's great news that your brain mets have remained stable and no new ones have grown again. This could very well be the radiation or ipi that is keeping it at bay. 

I don't let anyone make me feel like certain treatments won't work because you just don't know. Numerous people have had brain mets removed successfully with SRS and new ones didn't grow back - like you. Something is working and I send you so much luck and prayers for continued stable mets or a few more removed!

Lisa

Many impossible things have been accomplished for those who refuse to quit

Anonymous - (11/4/2011 - 3:35pm)

Lisa,

 

I am shocked. I admire your spirit.

Did you have any symptoms? How big are the tumors? How do the doctors explain growth so quickly since August?

I pray that you do not get side effects.

A.

Lisa13 - (11/4/2011 - 4:24pm)

I have no symptoms - thank God!! The neurologist said that the 2 small tumours are in very safe places in the brain and arn't involved anywhere that wil cause problems right now. The 1 tumour is about 4mm and the other one they thought was 2.2 cm is much smaller. Since it's all covered in blood, they can't see how big it is, but said it's much smaller.  I can't wait for the blood to absorb which is why WBR is the best for me now. When I asked 3 people there if I would have memory problems - they said no. Only small percentage of people get severe side effects.

It took 3 months for these to grow, so 4mm isn't too bad and the other one they don't know since it's covered. My oncologist just called me and said he's still unsure if the ipi has worked on the brain. He's thinking it might be working which is the reason the blood is the way it is on the tumour, but it's impossible to know.  I just have to hope since I was such a good responder on ipi, that the drug and radiation will do it's magic on microscopic crap in my body.   He even said not to be fooled that radiation doesn't work on melanoma cause it does and can kill tumours and cells.  I'm just thinking amazing things right now which includes that ipi doing it's thing.

Many impossible things have been accomplished for those who refuse to quit

kristine - (11/4/2011 - 4:18pm)

Hi Lisa - My Husband had brain tumor removed May 2010, WBRT June 2011 - Finished IPI in Sept - Scans are stable and he is still working everyday and has a great quality of life.   Keep the positive attitude - I know it's helped him!  God Bless and HAVE A GREAT WEEKEND!!!!cool

Lisa13 - (11/4/2011 - 4:30pm)

Kristine,

Thanks for posting this news about your husband. That's fantastic! 

I know people who had brain tumours even after ipi and had them removed. Some have had no return for months/years and that has ipi written all over it!

I wish you continued goodness!

Lisa

Many impossible things have been accomplished for those who refuse to quit

lhaley - (11/4/2011 - 4:41pm)

Lisa,

Crap, I am so sorry that this has happened.

I would have e-mailed you but your e-mail doesn't show on your profile.

I don't know yet if my treatment has worked. It started at 21mm but the issue is mine is deep so suggestion was not crainectomy unless the srs doesn't work. I don't know how long mine was there because my last mri had been over a year before. Mine did bleed about 1 cm but they still did the srs (using the Novalis machine - not gamma knife)! I had problems last weekend and ended up in EMR. This mri showed that there has been no change and now no bleeding. Next scan is soon (dating keep changing) in about 2 weeks or so. They are deciding if there is any shrunkage they will give it a little longer, if it is stable it sounds like they are doing the crainectomy and if it grows they are doing the crainectomy immediately.

There are so many opinions, I did call and talk to many. Because I've dealt with melanoma so many years I actually have met many specialists over the years. I took advantage of this and called people from years ago and discussed with them what was suggested to me. You have to go with your decision, just make sure that you have thought it out and also gather the information that you can.

If you look up James from Sydney he often tells a story about someone he met in a support group where he had WBR years (I think it was over ) ago and is still doing well.

The biggest issue I'm having right now is because of the steroids. They put them on immediately because of the pressure and also the bleeding, 4mg am, 4mg pm with dex. They've now weaned me 1/2 in the am and pm. As soon as they weaned me more then I started having issues. They've tried this twice and hasn't happened. Tomorrow is now a week and they are cutting again. I am almost twice your age so there are also different issues with age. At first I totally lost my balance and could only walk safely with holding my husbands arm. Now I can stand on either foot by itself for a normal lenth of time. The next time seemed to be an issue with a headache. Still not sure if this is totally a headache or being caused since I now am having some sores in my mouth. This is because I wasn't sensing the heat and burned my mouth and some other issues with the mouth. Again, I'm older than you and some normal issues are now just having extra issues.

I don't have any pain!!!  Just issues.  Today I made my own pattern and drew mickey mouse on a table for my grandbabies Christmas present. When I painted it was free hand.  I'm also quilting non stop.  Not being as quick and tired quickly, but I'm not stopping!  

I'm only telling you this because sometimes info ahead will give you some information.  Gather your family and plan on a long future together.

Sending hugs,

Linda

emilypen - (11/4/2011 - 6:00pm)

Hey Lisa,

Sorry to hear about the brain mets. On a personal note, my husband had WBR for 6 brain mets in August and we just got the results of his follow brain MRI, all looks great! no new mets and the ones that were there have shrunk dramatically.

We spoke with a number of radiologists about which way to go, gamma knife or WBR and ultimately did WBR because of the chances of more brain mircroscopic brain mets popping up, apparently melanoma likes the brain....

We were also told that having other mets in your lung or spine are good indicator that it might get to the brain.

Side effects were minimal, a little extra fatigue and yes he lost 75% of his hair but all in all very tolerable. And the tretments literally took 5 min.

And since IPI does seem to work on brain perhaps a long term response after taking care of these few mets will show up.

 Good luck!

Em

Lisa13 - (11/4/2011 - 6:36pm)

Hi Emily,

That's great news about your husband!  I'm glad he tolerated the WBR and it sounds like it really helped stabilize his mets.

Your husband and I have the same Dr - Dr. Hogg who I think is amazing.  He told me the same thing as what you've told me. He also said that gamma knife although is successful, there is more of a chance that radiation will do more for any possible microscopic cells creeping up.

Since I was a great responder to ipi, I really hope it keeps working! Dr. Hogg even called me this afternoon wondering if ipi was creating the bleed in 1 of my tumours. It's just so hard to know!

Good luck and thank you so much!

Lisa

Many impossible things have been accomplished for those who refuse to quit

MariaH - (11/4/2011 - 7:31pm)

Hi Lisa,

Sounds as though you have caught the brain mets early - and there are people who've had them treated with WBR or SRS , never to have them appear again.

Keep that chin up girl... you got this.

Maria

Karin L - (11/4/2011 - 7:44pm)

Big hugs Lisa.  Your attitude is admirable!  You got this is right....beat its butt.

 

Karin

mombase - (11/4/2011 - 8:15pm)

Hi Lisa!

I had two large brain mets and I am still kickin' around! They were surgically removed and I opted to not do the WBR, but I felt really good about my decision and that's what's important for you, too! Keep up the good work!!

Cristy, Stage IV

Getter done!

momof2kids - (11/4/2011 - 9:38pm)

Lisa, this just makes me so upset to see you going thru this since we're on a similar path, as these are questions I have wondered myself, about the WBR and having it done at some point.

I had one (quarter size) tumor in my brain that wasn't removed via surgery as it was on the opposite side of the head where my huge one was and it was done a month after they had even found it.  The small one had bled some, but thankfully had not covered up the spot, so they were able to see it and do the Gamma Knife.

It does suck they don't want to wait a bit longer to see if it can clear out and they can do Gamma Knife instead of Whole Brain Radiation, maybe I missed it up above, but why don't they want to wait (I may be missing basic information on brains/bleeding tumors as to why it needs out now vs a month later), but you're getting all the best info & stories from real live people here on this board and that will help you make your decision I hope.

I truly hope whatever you choose will work out for the best for you and this fight against cancer.

 

 

Anonymous - (11/5/2011 - 3:30pm)

Three things you may wish to consider before moving ahead:

1. A second opinion.

And ask the second doc the following two questions:

2.First  ask your doc first doc where he gets this information from saying that the bleed may be caused by the Yervoy. Ask about any studies, proof, etc. as other than what was said over at MIF, I could find no proof of this either online or in the phase three clinical studies. Not sure I would agree with one (or two) persons opinion on this even if they are a doctor.

3. Can you do Gamma knife now and possibly again on the second when it clears up enough? Since someone can only do it once, leaving the possibility of WBR for a later date if it is needed for more brain mets since you currently have two brain mets and not more at this time.

Lisa13 - (11/5/2011 - 3:45pm)

I have an email for my oncologist/neurologist ready to go and a phone call to place first thing Monday. I'm going to ask if I can gamma knife the first one and see about gamma knifing the next one when the blood is cleared. However, if there is any other way they can take it out, let's talk. I have no idea why they can't touch it at this point.  I thought I had read Lynda being able to have SRS after a bleed.

My Dr. wondered if the bleed was from Yervoy - basically the lymphocytes getting in there and killing it, but he really had no idea how to know this. Someone like Jimmy B could draw things that are being attacked :)  I was also told by someone that they're Dr. told them that brain mets were common in people who had successful ipi response and once removed, brain mets may keep away for quite some time. One thing for sure is, I've had 2 spots in my brain for anytime from the end of July on, so 2 makes me happier than more at this time. The fact that no other micro cells have landed anywhere else in my body these past 11 months has to be pretty good too.

I'm not against WBR, I'm just wondering if I can save it when I'm got lots going on - not 2.

Many impossible things have been accomplished for those who refuse to quit

Anonymous - (11/5/2011 - 4:59pm)

Right on. Save it for later if you need it since you can only do it once.

NYKaren - (11/5/2011 - 6:52pm)

Hey Lisa,

Just want you to know that I'm pulling for you and loving your kick-ass attitude.

karen

Don't Stop Believing