The information on this site is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment. Content within the patient forum is user-generated and has not been reviewed by medical professionals. Other sections of the Melanoma Research Foundation website include information that has been reviewed by medical professionals as appropriate. All medical decisions should be made in consultation with your doctor or other qualified medical professional.

Seeking advice about my mom

Forums General Melanoma Community Seeking advice about my mom

  • Post
    Elizabeth A
    Participant

    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

    Loading spinner
Viewing 1 reply thread
  • Replies
      dian in spokane
      Participant

      Elizabeth…where is your mom being treated? Seattle Cancer Care Alliance has an entire floor devoted to melanoma, and there are drs there who are right in the thick of the most current treatments and trials.

      Having said that, IPI, the trial your mom's doc is suggesting should she fail the chemo, is one of the MOST promising trials out there. And.. I think (If I'm correct) you have to fail traditional treatment before they will try it. Hence the Dacarbazine.

      Your mom maybe isn't into looking over the internet, and doing the research you are, but that doesn't mean she is in the dark. She could be comfortable getting her information from her doctors instead. A lot of people feel that way. And…she might not even feel like sharing all her info with her kids (some of us like to shield our children, even if they are in their 50s)

      And, while I DO believe that for stage IV melanoma, clinical trials are more hopeful than treatment..not everyone feels that way. MANY people feel, and rightly so, that 'trials' are just that..using people as guinea pigs for unproven treatments. Some people are more comfortable going with treatments that have a track record. Not that Dacarbazine's track record is that great.

      Has she also had some scans? Is the melanoma limited to her lymph system, or has it invaded some organs?

      I'm sorry to have to welcome you to this board, but there's a lot of collective personal knowlege of melanoma here. If you go backwards through the threads, you'll find one entitled 'roll call for stage IV patients' where you can read stories from many people here who are surviving for a long time at higher stages.

      Please give your mom a link to our site!

      good luck,

      dian in spokane (I was also diagnosed stage I in the 1980s!)

      Loading spinner
        Elizabeth A
        Participant

        Dian,  thank you!  I actually read your profile a few days ago and had several aha moments.  Hind sight being 20-20, I sure wish we had known that this disease can come back after 25 years.  It just never occured to us.  My mom had CT and PT scans and the disease (I would rather call it something else but I am a lady and don't use that kind of language) is only in her lymph nodes.  I saw the PET scan and it looked kinda scary to me, but all scans look scary to me so who knows.  I am estimating maybe 10 lymphnodes were enlarged. 

        My mom has always been treated at Swedish, you probably remember that up until maybe 5-6 years ago it was Swedish that had the alliance with Fred Hutch.   My husband was treated at U of W before their alliance with Fred Hutch.  I noticed that you travel to California.  I was also very interested in dentritic vacines when my husband was sick, although I couldn't tell you why today (I can barely remember last week, let alone 10 years ago.) 

        I think I will talk to my mom this weekend about getting a second opinion AT SCCA. 

        Elizabeth

        Loading spinner
        Elizabeth A
        Participant

        Dian,  thank you!  I actually read your profile a few days ago and had several aha moments.  Hind sight being 20-20, I sure wish we had known that this disease can come back after 25 years.  It just never occured to us.  My mom had CT and PT scans and the disease (I would rather call it something else but I am a lady and don't use that kind of language) is only in her lymph nodes.  I saw the PET scan and it looked kinda scary to me, but all scans look scary to me so who knows.  I am estimating maybe 10 lymphnodes were enlarged. 

        My mom has always been treated at Swedish, you probably remember that up until maybe 5-6 years ago it was Swedish that had the alliance with Fred Hutch.   My husband was treated at U of W before their alliance with Fred Hutch.  I noticed that you travel to California.  I was also very interested in dentritic vacines when my husband was sick, although I couldn't tell you why today (I can barely remember last week, let alone 10 years ago.) 

        I think I will talk to my mom this weekend about getting a second opinion AT SCCA. 

        Elizabeth

        Loading spinner
      dian in spokane
      Participant

      Elizabeth…where is your mom being treated? Seattle Cancer Care Alliance has an entire floor devoted to melanoma, and there are drs there who are right in the thick of the most current treatments and trials.

      Having said that, IPI, the trial your mom's doc is suggesting should she fail the chemo, is one of the MOST promising trials out there. And.. I think (If I'm correct) you have to fail traditional treatment before they will try it. Hence the Dacarbazine.

      Your mom maybe isn't into looking over the internet, and doing the research you are, but that doesn't mean she is in the dark. She could be comfortable getting her information from her doctors instead. A lot of people feel that way. And…she might not even feel like sharing all her info with her kids (some of us like to shield our children, even if they are in their 50s)

      And, while I DO believe that for stage IV melanoma, clinical trials are more hopeful than treatment..not everyone feels that way. MANY people feel, and rightly so, that 'trials' are just that..using people as guinea pigs for unproven treatments. Some people are more comfortable going with treatments that have a track record. Not that Dacarbazine's track record is that great.

      Has she also had some scans? Is the melanoma limited to her lymph system, or has it invaded some organs?

      I'm sorry to have to welcome you to this board, but there's a lot of collective personal knowlege of melanoma here. If you go backwards through the threads, you'll find one entitled 'roll call for stage IV patients' where you can read stories from many people here who are surviving for a long time at higher stages.

      Please give your mom a link to our site!

      good luck,

      dian in spokane (I was also diagnosed stage I in the 1980s!)

      Loading spinner
Viewing 1 reply thread
  • You must be logged in to reply to this topic.
About the MRF Patient Forum

The MRF Patient Forum is the oldest and largest online community of people affected by melanoma. It is designed to provide peer support and information to caregivers, patients, family and friends. There is no better place to discuss different parts of your journey with this cancer and find the friends and support resources to make that journey more bearable.

The information on the forum is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.