Home Forums Melanoma Diagnosis: Stage IV Brain Met – please need your opinion

  • This topic is empty.
Viewing 15 posts - 1 through 15 (of 18 total)
  • Author
    Posts
  • #21262
    mariag
    Participant

    Hello everyone,

    I am a “newbie”to this site. I am still learning how to use the site so forgive me if I make any mistakes.

    I think that you are so wonderful to help each other & share experiences. I am lucky that I found you and I need your help.

    I am a stage 4 patient. After doing IPI, I was cancer free for over 12 months.

    This week I had scans and I got devastating news. I have a “5” mm lesion of the posterior left frontal subcortical white matter. This is my first brain met and I have NO tumors anywhere else. I am very scared. Getting a brain met was my worse fear in life.

    I just moved to Southern California. I am considering crainotomy and Novalis SRS ( not Cyberknife or Gamma Knife)

    I would sincerely appreciate any input and experience you have with SRS & crainotomy.My main concern are these 4 areas:

    1. SIDE EFFECTS- Comparing SRS & Crainotomy: How has your experience (side effects) with SRS or Crainotomy effected your health that you still are having problems dealing with long term side effects? What is your experience with side effects

    2. STERIODS & ANTI-SEIZURE MEDS-I have read past posts using the search function that because of side effects of SRS & Crainotomy that you have to take steriods & anti-seizure medicine. Is that true? For both the SRS & Crainotomy are steriods & anti-seizure medicine necessary? What is your experience with steriods & anti-seizure medicine.

    3. MORE THAN 1 BRAIN MET-I have heard that if you have 1 brain met, you will probably get more because more microscope cells are highly likely in the brain. Has anyone just had 1 brain met and for how long ago was that???

    4. RECOMMENDATION for a Radiation Oncologists or Neurosurgeons in SOUTHERN CALIFORNIA area that you had a good experience/outcome with and what the MEDICAL FACILITY? If you had a bad experience, I would also find that valuable information too.

    Thank you so much for taking the time to read my post & to reply. I am sorry that my post so long but I have lots of anxiety over my brain met and lots of questions.

    Maria

    #60597
    Catherine Poole
    Keymaster

    Hi Maria,

    Sorry to hear about your brain met issue. Many hear have gone through this and have had success with SRS or Gamma knife. Please check out our Webinar on brain radiation by clicking on the WEbinars Tab in BLUE You may need steroids to control swelling. I would give UCLA a try, they have very state of the art facilities and it is a great place to find a trial once the brain met is zapped and/or removed. It isn’t the end of the world, despite feeling that way. I hope others who experienced it will share with you. Keep in touch..

    #60598
    PentiumIV
    Participant

    Hi, Maria!

    You will need a world-class integrated melanoma team to go thru all this mess. UCLA is definitely in this list. Only integrated approach would give us the chance. BTW, have you checked BRAF mutation status?

    #60599
    Brendan
    Participant

    Hi Maria,

    Sorry to hear about your brain met. Fortunately, it was discovered at 5mm.

    1. SIDE EFFECTS/2. STERIODS & ANTI-SEIZURE MEDS- Comparing SRS & Crainotomy:

    I had a brain met discovered in June 2012 (about 2cm). I had gamma knife in July. The day after Gamma I had a seizure (which obviously can happen but is not too common). I went on decadron to reduce swelling and keppra for anti-seizure. I had a craniotomy in November to remove the met (about 3cm by then). A recurrence was discovered (same spot) in April. I just finished CyberKnife (5 days) and I see my radiation oncologist this week to schedule my MRI.

    Dealing with the decadron was tough (it could have been the keppra as well, but my docs and I felt it was the dec). I found it difficult to sleep and I was always hungry. My wife said that there was an ‘edge’ to me-I was often cranky. The craniotomy recovery was different. Brain surgery is never pleasant, but it was not nearly as bad as I anticipated. I had the surgery on Wed, went home on Sat, and stopped my pain meds by Sunday. I was out of work for almost four months. There was not much pain involved. I moved very, very slowly for a while, but I was still able to walk around town, cook, play with my girls, etc. My decacrdon was increased so I had the same sleep/eating side effects I had after Gamma, but I was not as cranky.

    3. MORE THAN 1 BRAIN MET-My ‘second’ met is a recurrence and I am not sure how the docs classify recurrence (does it count as brain met #2?). I will ask this week.

    4. RECOMMENDATION-Sorry, I am on the east coast.

    I undertand your fear. I compartmentalize and it helps me. When I am at the playgound with my girls I put melanoma out of my mind. When I am alone I think about options, plans, etc.

    Good luck to you.

    Brendan

    #60600
    benp
    Participant

    Hi Maria,

    Unfortunately I have had a lot of brain mets. The most I have had at one time is 10. I have had 3 craniotomies and 1 round of Gamma Knife. Just today I had my 3 monthly brain MRI and it was all clear, very relieved. Previously I have had 2 large seizures, and have been on Keppra for the last 7 months.

    The 10 I had were treated with radiation. This is, I believe, the best route to go if the met(s) are small. I would not consider WBR, as it appears to have very little effect. Craniotomies are nothing to worry about, relative to other surgeries. Recovery is usually quite rapid and pain free.

    After any SRS you will need to be on steroids for a few weeks to suppress any edema. Fitting the frame to your head is definitely not fun, but short lived. Brain surgery is quite an intense process for around 2 days, but again eases off rapidly (unlike the bowel resection I’m recovering from!). You’ll probably need steroids for a week or so.

    Obviously I am not a doctor, but have been through this quite a lot. I would think strongly about doing SRS/GK and getting on further immunotherapy (more Ipi/PD-1/TIL) as soon as possible.

    Don’t worry about the treatment – it’s a breeze compared to the potential consequences of no treatment at all. Side effects are very rare in general. In any of these scenarios you’ll be back to doing most of the things you usually do within a week – maybe just with a hat.

    #60601
    Anonymous
    Guest

    Maria:

    Sorry to hear about your news and we completely understand your distress. But you came to exactly the right place for counsel and comfort. Much sage advice here and the only things I’ll add are to get a second opinion (you can have lesions in the brain for other reasons) and as said above, get back on IPI and/or a PD-1 trial. You would seem ideal seeing that you had what seems to be a great response to IPI before.

    Let us know what you decide, how you feel and your progress. We’re here to help.

    Jeff

    #60602
    jmmm
    Participant

    My husband had a huge brain met in October 2011. He had a craniotomy, followed 3 weeks later by gamma knife and has been brain tumor free since them. The craniotomy was scary, but actually the easiest surgery he had. 1 night in the ICU, 1 in a regular room and home the next day. Fitting the gamma knife frame was tough on him, but short-lived (the placement took about 30 minutes and he was loopy at the time). The gamma knife itself was painless, although he did get a headache from the pressure of the frame…one percacet took care of the pain. Recovery took a long time–2-3 months, but virtually pain free. He was just tired. He was on decadron and seizure-meds. They stink, but are necessary. I think for gamma knife he was on the decadron for just a few days and the anti-seizure meds for a couple of months (doc was being cautious because of both surgeries). His doctor does not like to do WBR…not effective for melanoma and tries to stick with gamma knife when possible. The brain met was the scariest part so far, but so far, no more brain mets.

    #60603
    Sandalwood36
    Participant

    I am very upset by what I’m reading here re WBR.

    Bob’s radiation oncologist at MSKCC has told us that he recommends WBR for bob’s 5 small brain mets, because they are small (< 1 cm) & there are probably more small ones that have not yet shown up on the MRI. Has anyone had any success with WBR? What were the side effects? We really need these tumors to stabilize so that he can get into an anti PD1 trial asap to hopefully help control his stomach & golf ball sized liver mets.

    #60604
    Alicia
    Participant

    Hi Maria,

    I know exactly how you feel. Dealing with the brain mets was the scariest part of my long battle with melanoma. I had 2 small mets (3mm) that were succesfully treated with SRS. The worse part was dealing with the steroids to prevent swelling of the brain. The procedure was very easy and painless. The machine that was used at the hospital didn’t require the screws to the head.

    I had mets to my lung, spine, small bowels and brain.

    If this helps, I can tell you that I have been free of disease for 8 years now, there is hope!

    Best wishes,

    Alicia

    #60605
    Kay6789
    Participant

    Hi Maria

    Sorry to. Her your news, I am a recent newbie here, my husband is stage iv as of may 2012 when I rushed him to A&E with severe head pain, he had a tumour the size of a tangerine! He had a craniotomy and recovered really well, fast forward to April of this year and another 3 small brain mets appeared he has just recently had cyber knife and again has not had any problems, had some steroids just before and after treatment, he has wide spread tumours through out that are being kept under control with zelboraf that he has been on since July 2012 . We were also told about possible other cells in the brain too small to see but want to stay away from WBR and would defiantly choose craniotomy or cyber knife again with out a worry, hope this helps, good luck and best wishes.

    Kay

    #60606
    Johnfdc7
    Participant

    Hi Maria

    I had two x 4mm brain mets discovered in Nov 2012

    By the time the mets were discovered, I was already suffering neuro symptoms and was put on a high dose of DEx immediately. I was on the Dex for about 3 months in total including the taper off period. Side effects were disrupted sleep patterns, general loss of strength (stairs were a problem) and weight gain. Even after tapering off I think it took about 3 more months to get back to normal in terms of energy levels. Having said all that, Dex dramatically improved my neuro symptoms at the time of diagnosis.

    Somebody already mentioned your BRAF status – that’s important. The BRAF inhibitors appear to be effective across the blood-brain barrier. I started on GSK Dabrafenib and within 2 weeks my mets had shrunk to half the original size.

    I also had gamma knife. This was a very straight-forward and painless procedure. No after effects except for extreme tiredness for about 3-4 days after. I also lost a couple patches of hair a few weeks later (since grown back) but not sure if this was due to the SRS or the BRAF. I was already on Dex at the time but I know that I would have been asked to take it for a week after the procedure if I had not been.

    6 months down the line, things are looking good and BRAF has been effective. Scans soon – so crossing everything that this continues!

    #60607
    PatW
    Participant

    Sandalwood, WBR is not the first treatment of choice for brain mets, but it may be the only treatment appropriate for certain cases. My first choice would be surgery (then the tumors are GONE) closely followed by SRS (minimal brain damage or side effects). Whether either of these techniques are suitable for your husband depends on the size, location, and condition of his mets. WBR does have significant and permanent side effects and does not usually cure the melanoma; it only slows it down. I certainly would not have WBR “just in case” there are hidden micro mets.

    Before making a decision about radiation, I suggest you view the radiation webinar on this site and then get a second opinion from a completely different melanoma specialty clinic. WBR may be necessary, but I would double-check that first.

    #60608
    Cecelia
    Participant

    Hi Maria. My partner had SRS three years ago for a single brain met, and has had no recurrences. She had high-dose dex before and after to control the swelling, and has been on anti-seizure meds ever since; although they make her a little sleepy at times, they don’t interfere with life to any great degree. She will have to stay on these meds because the location of the necrotic tissue left after radiation means that she will always be at risk of seizures; we are working with a neurologist now to refine the dose. Margaret found the experience very manageable, with tiredness as the only after-effect of the radiation.

    One word of caution–get your testing done at a teaching or research centre with excellent equipment. We have had two tests done at our local hospital over the last three years, and both turned out to be false when Margaret had the tests redone at our cancer centre.

    #60609
    cindy5
    Participant

    Maria,

    I understand the concern of hearing the diagnosis “brain mets” But I can only relate my experience with my 35 year old son who is a stage 4 melanoma warrior for 16 months now. In February of this year he had 2 2cm spots in the brain. He had SRS to both spots, then 3 weeks later one of them began to bleed, which is not unusual after radiation. So, he had to go in for a craniotomy to have the clot evacuated and the mass removed. His other spot was left alone. He was in the hospital for 3 more days, home for 3 days then went back to work. He stayed on the decadron for one week, the Keppra for 6 weeks (precautionaly for seizures) and could not drive for 6 weeks…that was the worst part–haha. It really has been an unusually easy going, well tolerated side trip in this journey. From what I understand whole brain radiation is not used unless there are muliple (over 5) brain mets. SRS is easily tolerated and does not blunt the patient’s mentation/thought process. My son had a headache for about 2 weeks, the decadron made him edgy and really gave him the munchies. The Keppra seemed to have no side-effects.

    As you have read before my post, the term “brain mets” is much scarier than the actual experience because they have much better ways of treating it now. Best wishes and Prayers going your way!

    Cindy

    #60610
    Dianap
    Participant

    Hello Maria,

    Thanks Alicia for the positive news after your brain tumour. I too suffered greatly with the steroid than the surgery. Ok, I fell into the 5/100 patients with the worst side effects, pretty normal for me! just wish we had known more about the side effects.

    Back to the brain tumour. I only had one tumour removed on 5th April size 4.5 c.m. missed on my scan in January 2013 and not picked up until the CT scan you have just before ippy.

    I too have other tumours on organs and will receive the last ippy next week with results on 28th June. I have a very positive outlook for ipilimumab drug as I feel it does pass the brain barrier and is working up there as well as the rest of my body, it certainly has its job cut out :D

    My Doctor decided to got ahead with ippy prior to the surgery. I did look into cyberknife but as soon as they said they could operate I leapt at the chance. Ippy was then reinstated asap after surgery. Recently after an infusion on 17th May, my very tight and painful stitches, even resulting in me attending A & E on the same day as Ippy, as I was desperate, all fell out in one go three days later. My husband was in disbelief as he knew what problems they had been causing me as they were very much there to stay! He put on his glasses for a good look – yes all gone and a beautifully healed scar in its place. The stitches I had in place last 90 – 120 days and the immune system has to chew them from the inside out, to allow the outside to drop off. The are done in a loop stitch.

    Ok not technical news but I for some reason (touch wood) feel more confident that it is doing its job.

    I will post my results regardless.

    Good luck and my very best wishes

    Diana

Viewing 15 posts - 1 through 15 (of 18 total)
  • The forum ‘Melanoma Diagnosis: Stage IV’ is closed to new topics and replies.