Stage 4 serious symptoms
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Stage 4 serious symptoms

› Forums › General Melanoma Community › Stage 4 serious symptoms

  • Post
    • August 19, 2019 at 5:38 am
    NZ Melanoma
    Participant
    Hello all, first time poster.

    My mum was diagnosed with Melanoma stage 4 about 6 weeks ago after receiving an x-ray to find out why she was experiencing a pain in her side. It turned out to be a 10cm tumor in the right lung with biopsy confirmed as melanoma not BRAF positive. A subsequent PET scan identified a small mass on the other lung and a small spot on the brain.

    In the past 4 weeks mum has declined rapidly in alot of pain requiring hospitalization and is on a pump for the pain, she is also struggling more and more to breathe that most exercise makes her sore and fatigued. She began treatment with Nivolumab two weeks ago but seems to be continuing to degrade and we have a meeting tomorrow to assess her continuing. The biggest issue seems to be the shear size of the tumor on the one lung causing all the nasty symptoms.

    Both mum and I would like to continue the treatment if there is even a small chance of potential improvement as she feels at 59 there is still lots to do. She seems to tolerate the treatment itself fine aside from the lung symptoms of the tumor. I am not sure what to do and am concerned the doctors may choose not to continue with treatment?

    I would love to hear any thoughts, Thank you in advance.

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      • August 19, 2019 at 12:41 pm
      Bubbles
      Participant
      Sorry you and your mother are dealing with this. Has surgery to remove the largest lung tumor been discussed? While surgery wouldn’t cure her of all her melanoma, removing the largest lesion may go a long way in making her more comfortable (after the initial insult, of course). Further, we have learned that immunotherapy works best with the lowest tumor burden. So, again, there would be conceivable benefit in surgical debulking of the largest tumor. Additionally, radiation may be considered to achieve the same goal. Radiation in the form of gamma knife or SRS (stereotactic radiation) could be incredibly helpful in ridding her of her brain met and may be used for the larger lung met as well for the same reasons surgery would be considered. Plus, we have learned that when radiation is combined with immunotherapy, responses are greater than with either treatment alone. Here are a zillion articles if you are interested: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=radiation+and+immunotherapy

      In addition to looking at BRAF status as you are, ipilimumab (Yervoy) another immunotherapy product is sometimes given WITH nivolumab. The rate of side effects can be increased with this combo, but the responses are better. And finally, if at all possible, be sure that your mom is being seen by a melanoma specialist. That can make a huge difference in treatment.

      But, most of all – there is hope! I was treated with SRS to a brain met and had surgical removal of the right upper lobe of my lung in April of 2010. I gained a place in a nivolumab trial in December of that year. Took the drug for 2 1/2 years, per the trial protocol at that time, and remain NED (no evidence of disease) for melanoma today. Your mom is lucky to have you in her corner. I wish you both my best. Celeste

      • August 19, 2019 at 6:38 pm
      BillB
      Participant
      Hi, 2 weeks is not nearly enough time for the Opdivo to work. Average response time is ~ 3 months. They might check at two months to see, but not after 2 weeks. Also, like Celeste said why not remove the large tumor if possible.
      • August 19, 2019 at 7:06 pm
      MelanomaMike
      Participant
      Hi NZ Melanoma, im Mike (MelanomaMike) nice to meet you, im so, so sorry for your Mum (Mom haha) and Mel diagnosis, THANK GOD shes 59 years old!! Being young, we can tolerate a good deal of meds & surgerys thrown our way, im 50 and cant imagine being 65 and over going through this, i always feel so bad for our “older” MFR folks…
      I can only Xerox, Echo repeat what Bubbles just said, a Lobectomy sounds like the way to go ASAP! That tumor will be gone immediatly!! Rather then slow shrinking of Nivo! Read my bio NZ, i had a Right Lower lobe Lobectomy using the VAT technic, i had a 8cm Mel Monster lurking there (RLL) and i tell ya, it caused Deep Nerve Pain!!! Whole body pain, not just in my chest, EVERYwhere, it would wake me out of a dead sleep! It wasnt a constant pain, it was however “daily/nightly but just at random times very wierd, i thought it was the “then” Ipi/nivo i was on, nope! After the surgery (Dec 2018) that deep excruciating pain has NOT returned NZ!!! Nerves & blood vessels being altered by a 8cm (3 inch) Monster! Your mums is 10cm at just shy of 4inch! Amazing huh? My surgeon said he barely could get it through my ribs! If you have any questions about the process of a Lobectomy just ask me!… take good care of your mum AND YOURSELF! dont ever EVER forget yourself, without your wellbeing, your mum can go to the wayside….hugs!
        • August 19, 2019 at 7:08 pm
        MelanomaMike
        Participant
        And what BillB just said! He wrote quicker then my “novel”! Hahaha….
        • August 21, 2019 at 2:24 am
        NZ Melanoma
        Participant
        Thank you all so much for your messages. It is very lonely with melanoma as it is so widely misunderstood and can feel like there is such limited information. Oh mom is mum in New Zealand 😉

        We had a meeting with our specialist again yesterday. We are lucky he specializes in Melanoma and lungs but unfortunately the tumor is not able to be removed or completely radiated as it is so large it has occupied nearly the lung complete and they do not see it viable to have such large surgery (probably alot bigger than 10cm). I could see the displacement of organs on the PET scan was significant and likely the reason for so much pain.

        We are located in New Zealand, we do not have gamma knife here but would imagine it would be in the same boat as radiation so looks like we are stuck on our current course of action.

        As mum’s symptoms are quite dominating (fatigue, lack of appetite and a significant amount of pain) that keeps her mostly in bed, the doctor has recommended a week of steroids to reduce inflammation and to improve her general condition to continue Nivolumab next week. It is also due to how symptomatic she is that we can not add a combined therapy.

        Currently Mum is in hospice where pain management and ready nurse assistance is available. I am incredibly Thankful for such a wonderfully free service keeping her comfortable at such a challenging time. We could not provide the level of care she needs or deserves without it. Cancer sure does its best to rob people of their dignity! It can be hard to not feel anger.

        We have spoken candidly as a family as to what Mum wants and we will support her wishes till the end of the world. She is an incredibly strong woman and is adamant that she does not want to die. Therefore we will do everything we can to fight this horrible disease together.

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