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aaron_oakes

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      aaron_oakes
      Participant

        Have you tried anti-inflamatory drugs?  I have the same symptoms, (not treatment related, they started before treatment), and the anti-inflamatory drugs work a little bit.  Also try to use some easy home remedies like drinking hot drinks after eating.  I drink peppermint tea after I eat and usually take a Tums, this works on the mild days for me. On bad days I'm with you, on the couch with rice bags all over my stomach and back in agony.   I also saw a post on here from a guy that put a little bit of Jello in hot water, he thought the way the Jello expanded in his stomach was why it worked.  I haven't tried it yet but you never know, very scientific, LOL.

        I am on Pembro infusions so I can't speak to the opdivo/yervoy but I do think I have seen other posts on here about this exact question in the past.

        Good Luck and think positive.

        aaron_oakes
        Participant

          Seashelly, I am not trying to scare you but I will relate my own experience with you.  I play a lot of soccer and about 5 years ago I noticed a bruised large toenail.  This was not unusual for me as my feet and toes would get stepped on regularly playing soccer.   Eventually the toenail fell off and this is what I expected to happen, what i didn't expect was how hard it was to get the toenail to grow back normally.  I kept messing with it thinking I was dealing with scar tissue and this went on for 5 years.  I looked at your pic, unfortunately I don't remember what mine looked like when I thought it was a bruise.

          Fast forward to last winter; I noticed a small lump in my groin, this was followed by weight loss and digestive issues.  In November I was finally diagnosed with melanoma and a CT scan revealed several swolen lymph nodes throughout my abodomen and chest.  

          Here's the good news, you are getting it checked and that is the best possible thing you can do.  I had no idea it was even possible to get cancer under a toenail and waited entirely too long to get it looked at.  The earlier you catch it the better.  Also, it is very possible that it is not cancer.  I was shocked when I found out how common melanoma starting under nails was and I understand your panic, (check out Bob Marley's story). 

          More good news is that melanoma treatment has come a long way, just read a few of the posts on this message board.  It won't take you long to find several people on here that have been alive and diagnosed with melanoma for 10+ years.  Also, as far as treatments go they are not as invasive as you might think.  

          Be positive, and be proactive. You are doing the right thing by getting it checked out.  i have only been diagnosed for a few months and I'm sure some of the replies you will get from more experienced people will be more informative than I can be.  

          aaron_oakes
          Participant

            Hi Mike, I am 2 doses in on Pembro and my 3rd dose is in 2 weeks.  I don't have tumors in any of my organs but have several swolen lymph nodes including one that is massive in my groin.  I have lost 40 lbs and have all sorts of pain, drained all the time, you know the story.  My question is have you noticed any improvement yet?  I can't get an answer out of anyone on how long I should expect to see results?  I know "everyone is different", LOL, but there has to be some sort of general standard?  I am taking part in a trial that combines T-vec injections also but I think that is specifically to reduce the tumors, not counting on it to work like the pembro.  Is the pembro the first treatment you have tried?

            aaron_oakes
            Participant

              Yes, I thought 2 doses sounded too early.  I waited too long to see a doctor and my symptoms are crazy abdomina complications from cramps to bone pain.  I lost a lot of weight and eating has been a massive challenge for me. My sentinel node is in my groin and measured 8.5cm last week along with several other swolen nodes throughout my chest and abdomen.  That being said I don't know how to explain that I have felt better than ever in the last four days and eating normally.  I didn't really think it was the Pembro and it may not be the Tvec but I'm being optimistic about it.  Yes, my lymph node got larger after the first injection but it has shrunk down a little after the second injection last week.  I haven't really had side effects other than after the injections and biopsies I get a lot of pain and am really tired.  It feels like when they mess with one node the other ones get pissed off and rebel but this goes away after about 2 days.  I guess feeling good this week could be due to some sort of natural cycle but I'm on board with positive thinking so I'm going with the treatment is working, LOL.  

              I think you are right that we really won't know anything until my 3 month scan though.  I see all you guys on here that have been dealing with this for years and I am such a rookie at it, impatient.  I appreciate everyone's input and taking the time to help those of us who are new to this and are just looking for answers.

              POSITIVE THINKING HEALS!

              aaron_oakes
              Participant

                I agree, I am on the trial with imlygic and I was told to use condoms.  I also thought this was to prevent pregnancy and when I told them my wife had a tubal ligation they insisted as nature is strong.  I still can't get a striaght answer out of them if this is to prevent passing the virus or pregnancy but I really think it's both.  They are terrified of a pregnancy happening while a patient is receiving this drug so I'm not taking any chances.  

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