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Results I did t expect
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Results I did t expect

› Forums › Cutaneous Melanoma Community › Results I did t expect

  • Post
    • December 30, 2020 at 4:27 am
    Daisy2018
    Participant

      <ul id=”topic-273769-lead” class=”forums bbp-lead”>

    • Hello fellow melanoma fighters and families. Since becoming a melanoma patient in February 2020 all news were bringing more bad news.
      I remember looking at my melanoma when I found it on my lateral part of the knee. It looked like something deadly. I thought that thing will kill me. It was Valentines day and I went to the bathroom and then I pulled my panties up and here it was staring at me the black deadly mark and I remember looking in the eyes of the young cute female doctor in her mid twenties who did that melanoma biopsy. She looked at me like when you can’t hide your sorrow. 

      In two month after I had wide dissection abd stage of 1b the PET scan showed couple new lymph nodes which turned out to be malignant.
      After removal of those and some healing process we started Keytruda in September.
      I got results of the PET scan today.

      New diffuse FDG avid lymphadenopathy in the chest, a couple new FDG
      avid left pelvic lymph nodes, and new FDG avid pulmonary nodules and/or
      peribronchial lymph nodes, most compatible with metastatic disease. New FDG
      avid sternal lesion suspicious for osseous metastasis. Couple additional
      possible osseous lesions as above.

      2. Progression of distal esophageal uptake, possibly inflammatory though
      recommend clinical correlation.

      3. Presumed postsurgical changes in the left inguinal region, though again
      a couple new FDG avid lymph nodes are suspicious as above.

      4. Persistent uptake in the endometrium and adnexa, similar to prior and
      demonstrated no suspicious findings on interval ultrasound, presumed
      physiologic.
      The PA of my oncologist said it looked like disease progression. I was hoping to get good news before New Years Eve. ????

      i was so positive that Keytruda would work.

      Its interesting she was mentioning SUV uptake of 8.
      I asked why do they think it’s bad news since my last lymph nodes lighted up to 22  SUV. She said since it’s in multiple areas it correlates with progression.
      I wonder if I am stage 4 now?!

      They recommend biopsy a bronchoscopy Jesus Christ! I remember watching them doing my leg lymph node biopsy on a bog screen in OR. They pocked  in it like 30-40 times abs it was nothing gentle about it.
      I would think they would change treatment now. I was Braf positive after my last biopsy. I did ask my oncologist last time I saw him what we would do next if Keytruda would not work. He said targeted therapy if I m still Braf positive. I asked about Ipi/nivo he said lots of toxicity.
      I m sure we will circle back to ipi/nivo at some point. This beast doesn’t seen to be letting go its grasp.

      I was hoping I got away with a scare, couple ugly scars, some lymphedema in my thigh and no side effects of Keytruda .
      I thought it would be smooth sailing with Keytruda. So naive.

      My sons are really taking it hard. I told them lots of people get positive news after several years of bad news and they should not give up on me yet.
      Not sure how people do that though getting bad news for years.
      Thanks for reading. Thanks for replies n advance.

       

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    • Replies
        • December 30, 2020 at 4:33 pm
        Bubbles
        Participant
          Sorry for what you are dealing with and facing, Daisy.  Sucky as it is – I think a biopsy and bronchoscopy are required.  No time for assumptions when you are dealing with crap like this.  If your lesions are in fact BRAF positive melanoma, the BRAF/MEK combos can be absolute miracle workers!  Sadly, their effects can be short lived as tumors can learn to work around them in about 6-9 months.  HOWEVER!!!   That is not true for everyone, with some on this board being maintained on those drugs for years.  Additionally, while the ipi/nivo combo does have more potential side effects than either anti-PD-1 product alone, that is not a reason to rule out its use.  Be sure you are seeing a melanoma specialist.  As you are more than well aware, this shit don’t play.  You need someone on top of their melanoma game in regard to treatment and side effects of same.

          I may have shared this with you before, but you may find it helpful as it covers all standard melanoma treatments- https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/08/melanoma-intel-primer-for-current.html

          Here is a list of melanoma specialists you may wish to contact for a second opinion, though it is by no means conclusive and all will want the biopsy results before making recommendations:  https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2019/10/internationally-renowned-melanoma.html

          You can use my blog’s search bubble to pretty good effect for specifics that may interest you.

          Wish there was more I could do to help.  Hang in there.  Despite dark days, a melanoma diagnosis is not without hope.  Look at me – Stage 3b in 2003.  Second primary in 2007.  Stage IV with brain and lung mets (up had bronch and upper lobe of lung removed) in 2010.  Phase 1 nivo trial from 2010 – 2013 and……I’m still here!!  Hang tough.  Seek the help you need.  Yell and scream and ask questions here.  Yours, celeste

           

           

          • December 30, 2020 at 5:08 pm
          Daisy2018
          Participant
            Thanks Celeste for your response. You are a very kind soul. I m sure you have  earned a lot of credits up there in haven. ????
            My ex who is a doctor said I can’t believe it you got that fast from stage 1b in February to stage 4 in December the same year.
            My doctor is a melanoma doctor. I was not planning to get second opinion.. I think the is the right plan assuming it’s progressing.
            Thats the plan. Biopsy, then targeted therapy if it is still in a cards then ipi /nivo. I think this is what people do here from what I read.

            It’s interesting that I feel weird after PET scan. Much more lymphedema in my leg and overall fluids shift  in my body. Not sure why.
            I m doing DR. Budwig protocol and wonder why it’s not working?
            I wonder she was saying patients should not use cancer treatments drugs because they don’t work with clean diet and regimen. I wonder if Keytruda makes it worse. I guess I will never know. My son told me if in a past 20 years this diet was not proved to be a cancer treatment it is most likely is not. otherwise it would be a cancer cure.

            • December 30, 2020 at 6:05 pm
            Bubbles
            Participant
              Yes.  Melanoma is crazy.  Some folks progress quickly.  Some do not.  Researchers are looking at this issue – terming those with slower progression as “latent”.  There is some question as to whether the difference is within the patient’s immune system or the melanoma itself.  Articles are on my blog if you are interested.

              As much as I am an advocate for healthy eating, sun protection, and exercise (and have done them all my life and STILL ended up with melanoma) – NONE of those things absolutely prevent melanoma nor do they get rid of it.  I have ZILLIONS of articles on all of that on my blog (use the search bubble if you are interested) – including a whole series on “everything cures melanoma”.  Bottom line – NO diet, despite the adverts – Gerson, Budwig, Cellect, anti-sugar, ketogenic, and on and on – has any SCIENTIFIC proof that it works to rid our body of cancer generally, or melanoma specifically. In fact, scientists have actually debunked them as frauds and scams.  Sad, but true.

              Now – There are some studies that note exercise as helpful.  Some studies and ongoing work regarding our microbiome show that antibiotics taken at the start of immunotherapy cause patients to respond less well, while those who eat lots of “good cultures” (NOT those out of a bottle in pill form) like those in yogurt, kefir, sauerkraut, etc. tend to respond to immunotherapy better.  Lots of reports about all of those are posted as well.

              So – melanoma sucks great big stinky hairy green wizard balls.  PERIOD!  Lots of things kill melanoma in the petri dish but do nothing in our bodies.  Eat a healthy well balanced diet filled with what you think is best for you.  Exercise when you can.   Avoid antibiotics unless you really need them.  Find a melanoma specialist you trust and go for the treatment regimen you feel is best for you.

              Hang tough.  You can do this!!!  Yours, c

              • December 30, 2020 at 6:46 pm
              Daisy2018
              Participant
                Yeah. Everything you say  is correct. I m/was pretty healthy. I was hiking 2-3 miles a day with my dog most of the days, biking,  lifting weights several times a week. Eating healthy, vegan though lately.

                 

                It still didn’t help. Maybe  big juicy steak is on my New Years  Eve menue now.
                I was saying previously. When you get to the point of serious disease you live in two worlds. You enjoy and appreciate what you have much more still being In this world and feeling detached  from it the same time because you are looking into very possible non existence in some potentially close future.  It’s hard to make plans even buying pants now or planning your garden for next summer. You think about Christmas ornaments once you put them back in their  boxes if you will get them out next year. Something regular people don’t think about in their regular lives.
                It definitely gives you prospective on time you have and appreciation of things you can  still do.

                • December 30, 2020 at 7:34 pm
                Bubbles
                Participant
                  I completely understand.  I wrote this ten years ago – https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2010/09/looking-forward.html

                  Since then I’ve seen both of my children marry and develop their own lives.  I’ve worked, hiked, gardened, traveled.  Dealt with a completely different cancer.  Experienced many daily joys.  Dealing with the realness of your mortality will never leave you.  But, you will learn how to deal with LIVING – despite the shadow.  c

                   

                  • December 30, 2020 at 8:59 pm
                  Daisy2018
                  Participant
                    Sounds beautiful.
                    It was a big blow I didn’t expect.  I felt in control with my diet, I was exercising, getting treatment I felt good.
                    I know there are lots of people here who dealt with progressions/ recurrences for many years. The lucky ones got it  in NED status. The unlucky ones will have their names in our memories like Melanoma Mike.
                    It was nice to get an update even the bad news is better than not knowing.
                    I wonder what is the percentage of NED vs deceased here?!

                    I will roll with the punches like I always do and go on living my life whatever is left short or long.
                    There is no point of dwelling on negatives it only makes you more miserable. I hope I will see my sons graduate high school and my grandson starting kindergarten.
                    My father is going to be 80 this year. I took care of him when he was going through his cancer ordeal and pulled him out of a really dark place when nobody else was hoping he will make it. It’s nice when there are people who gives us support.
                    Thanks for responses. You really give people some hope in times of darkness.

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