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February 5, 2013 at 7:09 am #20993Barbara1230Participant
My husband is stage IV. We live in New Zealand. In 2009 he had a melanoma removed from his shoulder. It was stage 111C. He had a WE and SNB which showed microscopic mets in one node. He had further surgery which removed a further 29 nodes all of which came back clear. The onc arranged for him to have 6mthly brain scans but no other follow up
😆treatment. All brain scans whew clear until March 2012 where a shadow was detected on his brain. A PET scan showed widespread mets including 12cm met on adrenal gland, bone, cerebellum met, lung, iliac blade… Only treatment suggested was dicarbazine every three weeks. Did three sessions but scan showed further growth. During the dicarbazine treatment he noticed weakness in legs. Onc prescribed voltaren. Weakness steadily became worse until he needed walking sticks and finally wheelchair. Dr arranged MRI which showed mets to meneges in spinal cord (cauda eqina syndrome) and brain. Radiation to back and brain followed with steroids.
Very few options for treatment here. Onc was very reluctant to prescribe ipi as he was now in a wheelchair full time and was concerned his lack of mobility would be an issue if he had some of the severe side effects. Cost also a big issue as ipi is not covered by insurance here and the compassionate use ended in March while we were waiting for the BRAF test results. Negative unfortunately as zelboraf is still available on compassionate use. The cost per treatment was around $67,000 for each of the four doses. He tolerated it very well with no major side effects. He did have a scare with a pulmonary embolism and is now on clexane. Apart from that he seems to have stabilised. He is still unable to walk due to damage to nerves but is able to move his legs, standup (with help). He has good bladder and bowel control. We are trying to get help to try and get him walking again. Has anyone else had experiences with cauda equina syndrome caused by mets to meneges in brain and spinal cord. We are not sure whether the problem with not being able to walk is coming from nerve damage in brain or spine.
Finally we are going in for the 6week post ipi scan on Friday. Can’t help but hope it will be good news because he is seems pretty well.
Treatment option here seem very limited compared to what is available overseas. Does anyone know if clinical trials in the US or UK or Australia are available to New Zealanders?
Sorry this was so drawn out. I am spending hours reading all the posts so that I can be better informed about anything that can be done to help my husband get back on his feet.
Would really appreciate any help.
BarbaraFebruary 5, 2013 at 3:12 pm #58977zephyr66Participant
My partner, Amy, has tumors on her cuada equina. Her’s started with pain in the saddle area when mountain biking. Long story short, pain got worse, numbing gradually and progressively set in, one leg got weak, then the other got weak, and she began having problems urinating and bowel movements were difficult. She needed a walker around the house and a wheelchair for any distance at all. This was 3 weeks ago. She has been on zelboraf and recently started BRAF/MEK trial a week ago and pain is gone and strength is coming back. Bowel problems have dissipated, and she can now walk up stairs alone and is getting more function back but it’s slow. We have had differing opinions about what will happen. One oncologist told us she will probably not regain use of legs due to nerve damage and the other said since there was no spinal compression, she should regain use. We opt to believe the latter and he said low impact exercise is good to help bring back function (just walking with the walker as much as she can, etc). I’m no doctor, but the symptoms you describe with your husband match Amy’s and all point to the symptoms related to cuada equina syndrome. Is the tumor in brain close to an area that would control the above functions? It sounds like the IPI has done some good and that is wonderful. Do they have PD1 trials in New Zealand?
SylviaFebruary 5, 2013 at 3:35 pm #58978Catherine PooleKeymaster
For trial options, can you go to Australia? I believe Dr. Richard Kefford has the PD1 trial (Merck) due to enroll. His email is:
Otherwise it is very costly to enroll in the U.S.. Europe may be another option, but you will pay out of pocket too. I hope you can find a trial. Let us know.February 6, 2013 at 9:35 am #58979Barbara1230Participant
Thanks Catharine and Sylvia
Gordon is Braf negative so can’t have zelboraf which is unfortunate as it sounds like it is doing wonders for Amy. Is there a test for the level of nerve damage? Originally there were two brain mets in the cerebellum but after the dicarbazine they found the spine and brain meninges. He had WBR to treat the meningeal mets. Gordon has lots of pins and needles in his lower legs, gets very swollen feet but it seems the loss of muscle tone in his bottom and legs is the main problem. He is doing lots of exercise but we are not sure if it doing any good or might cause further damage. Have been to physio, acupuncturist who say he should be able to regain some ability to walk but doesn’t seem to be happening.
Our oncologist said there was possibly an anti pd1 trial commencing in the next few months which might be the one you mention he said but that Gordon would not be eligible for it because he had ipi. I have read posts that confirm this. I think I will email Dr Kefford and try and enrol him anyway. It’s not too difficult for us to get to Sydney.
Thank you for yor replies. I hope Amy continues to improve. Will update post on results of Gordon’s scan on Monday. Maybe will help identify what is causing immobility.
BarbFebruary 6, 2013 at 12:55 pm #58980PatWParticipant
FYI, steroids, particularly dexamethazone, can cause atrophy of the lower extremities. If your husband has been on steroids for a long time to reduce brain edema, that may be contributing to his weakness.February 6, 2013 at 1:22 pm #58981Catherine PooleKeymaster Barbara,
Actually this trial requires you have failed IPI first. So your husband would be eligible. Send an email anyway as that would be your closest site. Let us know how things are going.
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