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Newly Stage IV – scared
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Newly Stage IV – scared

› Forums › General Melanoma Community › Newly Stage IV – scared

  • Post
    • August 9, 2021 at 7:40 pm
    Stefan Makhoul
    Participant
      Hi, this is my first time posting to this board and it feels comfortable to find a community going through a similar thing. About three months ago my mum had a growing lump on her leg which doctors originally thought was bone cancer, after a biopsy it turns out that it’s melanoma, and that it’s also spread to the lungs and potentially other sites in the body. We haven’t been given a formal diagnosis yet but we don’t know the original site of the melanoma, does that make treatment harder? She’s going in for surgery tomorrow to have the cancer removed from her leg tomorrow, and is going to be seen ‘within 12 weeks’ by a lung specialist to address the tumour in her lung. This has been in her system for possibly over half a year now. She hasn’t had symptoms of lung mets or any other mets, any advice would be appreciated! We’re ready for the start of a hopefully long battle.
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        • August 9, 2021 at 8:12 pm
        Bubbles
        Participant
          So sorry for what you and your mom are going through.  First and foremost, make sure that she is being seen by an oncologist who is either a melanoma specialist or very familiar with treating melanoma patients.  While she may have to wait to see a pulmonologist for “12 weeks”, I would not want her to wait that long to begin treatment.

          Here is a primer I put together that describes current melanoma treatment:  https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/08/melanoma-intel-primer-for-current.html  

          While the ipi/nivo combo is the current gold standard for most Stage IV melanoma patients, you should make sure that your mom’s tumor is tested to determine BRAF status in order to find out whether or not targeted therapy would also be an option for her.  Many folks on this board also have an “unknown primary”.  That situation won’t change what happens with your mom at this point.  If they have not been done already, your mom will need scans of her body to make sure there are no other lesions and an MRI of her brain to check for tumors there as well.

          Back in the dark ages of melanoma care, in 2003, I was diagnosed with Stage IIIb melanoma.  None of the current therapies were available so I did go on to develop tumors in my lungs and brain in 2010.  I did sit with that “something” in my lung for over 6 months as I have asthma and initially the lesion was thought to be related to that.  Despite my asthma, I had no signs or symptoms of the lung lesion.  I had the lesion surgically removed and radiation to the lesion in my brain in April of 2010.  Sadly, none of the current treatments were FDA approved until 2011.  BUT – in December of 2010, I gained entry to a Nivolumab (Opdivo) only phase 1 trial.  I took it for 2 1/2 years and remain NED (no evidence of disease) for melanoma to this day.  The ipi/nivo combo (Yervoy/Opdivo) has even better response rates than Opdivo alone as you can see in the primer.    SO!!!  Despite the difficulties I know your mom is facing, there is every reason for hope!

          Hang in there.  She is lucky to have you in her corner learning and advocating for her.  This board is filled with many smart caring peeps.  Ask more questions as you have the need.

          Wishing you and your mom my best.  Celeste

            • August 9, 2021 at 8:20 pm
            Stefan Makhoul
            Participant
              Thank you so much for your response, it’s much appreciated! That post with all the treatment options is massively helpful, however this is slightly complicated by her hyperactive thyroid, she’s currently on medication which deals with that quite effectively, but do you think this could prevent her from having some immunotherapies?

              Once again thank you for your response

              Stefan

            • August 9, 2021 at 8:30 pm
            Bubbles
            Participant
              Her oncologist will need to be aware of her thyroid condition and treatments and follow her thyroid status carefully as the thyroid can be impacted by immunotherapy – usually making the thyroid HYPO active – if it is affected at all – but it should not be a reason to prevent the use of immunotherapy.  c
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