Mets in Spine…Dr Says Not Able to be Cured

Hi Cindy – Wow!! I don't think I'd take any of that as "gospel" before you speak to her doctor at M D Anderson (and I'm assuming that person is a mel specialist)!! I'm not a medical person or even a mel patient but I would be getting 2nd and 3rd opinions on what your daughter was told. I just don't understand why they would even give an opinion as to the outcome of immunotherapy if it hasn't been tried.

I'm an advocate for my sister (sometimes that means "pitbull") and I think I'd be "spitting bullets" right now if I'd heard the same thing.

Before anything else, my sister's first treatment at stage 4 was radiation to the spine because the pain was excruciating (11 known spinal mets then, one vertebrae fractured). It started to work within a few days and a couple of weeks after finishing, the pain was lessened considerably. So, I hope it works as quickly and effectively for your daughter.

Throughout all treatment my sister's had weird numbness in different places, drop attacks out of the blue, severe weakness in her right leg and travelling pain that's alot like sciatica. At times had to use walkers and wheelchairs and got around the house holding onto furniture, countertops, etc.  So, please tell your daughter that all kinds of quirky things like that can happen but not to read a lot into it until she has more concrete answers.

Wishing the best possible treatments and outcomes for her!!

Barb

He must have magical powers to see her expiration date, or a direct line to G-d, or better yet, be clairvoiant.  If it is only the spine met, then shrink the danged thing as agressively as possible and get on immunotherapy.  If she isn't ready to give up, then don't.  Most people know when it is time to let go and make peace with it, but if I were in her shoes I would be hopping mad and yell at him to not give up on me because I'm not, you're either with me or your not.  PERIOD.  There are more radiation docs and others who have seen the amazing results from new medicines just within the past 3 years.  Obviously this guy isn't one of them.

BTW – I am 7 years NED after IL-2 and surgery, ONLY.  It can be done.

If you don't have a melanoma specialist, you should get her to one ASAP.  I think it makes all the difference in the world.  You said you are in Southern California – The Angeles Clinic (Dr. Freeman) is AWESOME.  They are on the leading edge of all that is happening with melanoma.  I don't understand, like you, why the docs are saying immunotherapy wouldn't work.  Keep advocating for her – you are doing the right thing!

Linda

I'm in the Boston area so not sure what is available in the Alabama area but saw a listing in a previous post.  I've put it at the bottom in case it might be helpful.  I think your daughter should have a melanoma specialist.  They would certainly be able to answer why immunotherapy would not be an option.  I saw one specialist who was making me wait almost a full month to start treatment and when I went to Dana Farber they were adamant that I start treatment right away.  I can't say it hasn't been a bumpy road but I do think getting on the immunotherapy sooner rather than later was a good idea.  I like being at a center where all the doctors email and meet up to discuss my case.  I currently have a melanoma specialist, neurology oncologist, neuro-radiation specialist, and a neurosurgeon.  There are quite a few patients at Dana Farber who travel for treatment.  I'm lucky that it's only an hour drive but many travel by plane or drive 4-5 hours.  Good wishes and push for that second opinion with a melanoma specialist.  They will see her disease differently and understand her options better.

Jennifer

UAB Comprehensive Cancer Center
University of Alabama at Birmingham
The Kirklin Clinic, 3rd and 4th Floor
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Birmingham,
AL
35233
Phone:
(205) – 996-7546