Seeking advice about my mom

I would like to ask your advice about my mom.  She was diagnosed 3 weeks ago stage 4 melanoma.  In 1985 (approx.) she had a mole removed from the top of her foot by her dermatologist.  When the path report came back as melanoma, she was referred to a surgeon for follow up.  He took additional tissue which came back clean.  “No additional treatment necessary.”  She still sees the same dermatologist once a year for a full body check.

I would like to ask your advice about my mom.  She was diagnosed 3 weeks ago stage 4 melanoma.  In 1985 (approx.) she had a mole removed from the top of her foot by her dermatologist.  When the path report came back as melanoma, she was referred to a surgeon for follow up.  He took additional tissue which came back clean.  “No additional treatment necessary.”  She still sees the same dermatologist once a year for a full body check.

About 6 months ago my mom started feeling unwell.  She had unexplained fevers, loss of appetite and weight loss and indigestion.  A bladder infection seemed to explain the fevers, and an increase in medication took care of the indigestion.  She saw her oncologist for a routine check up (2001 and 2007 breast cancer, early detection, radiation and irimidex (sp.) to remove estrogen from her body) in July.  He examined her and ordered a bone density test (she is shrinking from the irrimidex.)

Three weeks ago I took her to the emergency room for abdominal pain and vomiting.  A CT scan revealed enlarged lymph nodes in her peritoneum.  They drew blood for a CA 125, ordered a PET scan and referred her back to her oncologist. The CA 125 was normal, he said she more than likely had lymphoma which is treatable and ordered a biopsy on an enlarged lymph node in her neck.  The next thing we know he is telling us that it is melanoma which does not have reliable treatments.  (My husband died 10 yrs ago from kidney cancer (2 rounds of IL-2 and a mini stem cell transplant at the NIH) so I know a little bit about cancer that does not respond well to chemo.)

He recommended dacarbazine followed by ipilimumab if the dacarbazine fails her.  I did some brief research on clinical trials because I remembered that you can disqualify yourself by having been previously treated. There is a trial at the U of Washington/Fred Hutch (we are in Seattle) that randomizes between dacarbazine and RO5185426 a drug that has had some success if you have the V600E BRAF mutation, but you can’t have previous treatment.   The oncologist said it would take 3 weeks to have her tissue tested and that she should not postpone treatment    After agonizing we decided to start the dacarbazine.  We did request that her tissue be tested for the BRAF mutation and at least one other mutation.  My mom started the dacarbazine a week ago and is tolerating it.  

My mom will be 80 in January.  She is very active, sits on several non-profit boards and retired last year from an appointed position with the state.  She has always done exactly what the doctor says to do.  (I almost never do what the first doctor says and have always gone for at least one other opinion.)  My mom agreed that I would do some research.  She truly believes this treatment will work.  I worry because the stats are not great, on the other hand it does stabilize or shrink some of the time, and she believes in it which is worth something.

I am unsure as to how I should proceed.  We really have no idea what to expect (and maybe don’t want to know) as to how sick she really is.  There are multiple enlarged lymph nodes.  I would like her to at least see Dr. Margolin at UW, but she feels like that would be admitting that this treatment will not work.  She did tell me that she would be happy if she still had 2 years.  I like her oncologist, he is kind and patient and responsive, but I don’t really think he knows very much about melanoma.  My mom mentioned to him that there was some darkening on her foot at the site of her primary and he said that it was nothing.  I noticed there is a patient on this bulletin board who had a long remission and that her darkening was something.  I am pretty sure that I could sit down with my mom and explain to her that there are promising treatments for her disease in clinical trial and that getting a second opinion does not mean you are giving up on the conventional treatment.  I am trying to respect her choices but I am realizing that if I shelter her from the statistics then she is making decisions with incomplete information.  I would feel so much better if I could put this in the hands of a doctor that sees possibilities.  I am afraid that she trusts a system that is very broken, i.e., you have to fail the approved drug in order to get the better drug that is awaiting approval.  That’s great if you have lots of time and don’t mind being sick from the chemo.  I am afraid that I might encourage her down the wrong path and then have to live with that.  Any ideas?

Elizabeth