Home Forums Melanoma Diagnosis: Stage IV Should I be having further intervention now?

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  • #22288
    Annieo
    Participant

    Hi All,

    I haven’t been on this forum for a while as thankfully all has been quiet with my melenoma.

    Since last December I have had four recurrences, all in my thigh area. I had them all surgically removed and the decision was made not to start any treatment until it spread outside of my leg. I have rheumatoid arthritis. For this reason my oncologist did not want to start me on Ipi unnecessarily, due to the possible side effects I might suffer.

    Last August, after my fourth recurrence, my oncologist predicted that I would definitely be on treatment by the end of 2014. That was the only definite he could give me… It is nearly 2015 now and thankfully his prediction didn’t come to light! I have been lucky, I know.

    In hindsight, it was a tough few months, just waiting for things to progress. I felt unable to make plans. It was difficult to ignore it.

    Now, for the first time since the summer, I feel that maybe I could forget about melanoma for a while. However, for the last two months, there has been a change in my leg symptoms. My thigh is constantly heavy and I get pins and needles. It reminds me of the way my leg felt during my first recurrence last year. At times I get shooting pains in random areas of my thigh and I can get angry pain/aching and discomfort through my thig and groin. I have reported all of this to my G.P., my dermatologist and my oncologist. They are all aware of my situation. However,I find that they’re dismissive of it. I am not to worry about it and just keep an I on it. I don’t mind having discomfort but I do mind not knowing what is causing it. Peace of mind is everything. I feel that there is a very real possibility that there is an underlying recurrence, probably too small at this stage to show up on the PET scan.

    I have been so happy with my care team to date. I am not due to see my oncologist for another two weeks, the 12th of January. I am told that his thinking is that ‘if the melanoma is there, it will present itself’. I don’t fully understand why there is no urgency to find the source of my painful leg. Is it that, at this stage, early surgery will not effect the outcome? Is it ok to leave it there? Am I right in thinking that there’s a possibility that melanoma is causing my discomfort? I know it could be surgical symptoms with. But how can anyone be sure without further intervention. There was a mention of doing and mri of my leg next March. I’m not sure how I feel about waiting til then. I need to be sure that it is okay to do so.

    I would understand, if it’s the case that it doesn’t matter when it’s removed from my leg, if it is melanoma. But no-one has said that to me.

    Any advise would be welcome please. I have been heavily pet scanned in the last year so my oncologist does not want to do anything further just now. Can anyone tell me howthese limb recurrences are treated on an ongoing basis? I will ask my oncologist questions when I see him in two weeks but a little knowledge going in would help! It’s hard to find any information online for my situation.

    Thanks in advance,

    Anne

    #65988
    Catherine Poole
    Keymaster

    Hi Anne,

    I tend to believe that people know their own bodies best and would trust your intuition. Maybe get an outside opinion? I’m not sure what to tell you otherwise. Hope you find out it is nothing progressing!

    #65989
    msue5
    Participant

    Hi Annie

    Just wanted to let you know the problems I have had with my leg following a CLND and flap reconstruction in Jan and Feb of 2011. I had the usual occasional nerve pain and numbness following these surgeries that started diminishing over time. On Christmas Day in 2013 almost 3 yrs after these surgeries I had severe pain in groin and thigh and sometimes lower leg. The pain never stopped after that day. It continued some days worse than others but Never really left. I was getting sharp pains in my original WLE scar(2010) and other scars and some days my groin. Almost every day my leg ached so bad it was debilitating and there were days I wanted to chop my leg off! Spinal and Leg MRI were neg. I finally started on Neurontin which worked magic. Unfortunately it didn’t last and I had to increase the dosage. I still have episodes of unrelenting pain that can last up to three days with no sleep, can’t eat and I feel like I will go mad. In the midst of this my Lympedema disappeared! I use Lidocaine patches if one area hurts more than others but most days it is too generalized to pinpoint any particular area. I actually haven’t had a really bad episode in 2 weeks just some mild pain. My diagnosis is neuropathy but my Dr’s are baffled as to why this occurred almost 3 yrs after surgery but I feel like it’s not going resolve itself. Just wanted to let you know that it might not be Melanoma and could be Neuropathy. My Oncologist Physiatrist(PT) said nerve pain can occur at anytime but agrees this is unusual. I wish you luck in trying to find an answer. I feel your pain!!!

    Mary Sue

    #65990
    SoSoCal
    Participant

    Annie and Mary Sue,

    I agree with Mary Sue that this could definitely be neuropathy ~ which is often associated with Autoimmune Crappola. I have Sjogren’s and RA, and the neuropathy (most likely from the Sjogren’s) is a big issue in my life.

    Fortunately, Lyrica has calmed those mis-firing nerves, making most days bearable. When the zinging, stinging, burning and aching happen, I imagine electric wires that have been ripped from the pole during a storm ~ dancing and jumping and causing general havoc.

    I have noticed that my newer surgical scars zing like they haven’t done in quite a while. It took about 16 months or so for the WLE and SLNB affects to heal completely, due to a couple of small nerves that were snipped during the SLNB . My arm, and an area in my back stung and ached during that recovery period. Now, with the Sjogren’s (and Whatnot), those areas are zinging off and on, as do the scar areas themselves. Even odder (at least to me), is that the scar area from a squamous cancer removal also zings. It was such a small incision!

    So, Annie, based on how you describe what’s happening, I’d have to go with neuropathy. I do hope that’s what your doctor concludes as well.

    This Stage 1B kid follows your journeys closely. How these newer therapies affect AI is of interest to me, and as I’ve told you before – you are the pioneers that give hope to the rest of us.

    Sending prayers for a 2015 that brings you both peace and wellness…

    Cathy

    #65991
    Annieo
    Participant

    Thank you so much Mary Sue and Cathy for sharing your experiences with me. It’s a real comfort to know that ye have experienced the same as myself, and especially to hear that melanoma wasn’t in the equation for ye!

    My first recurrence, a year ago, was knitted in to the nerve. During the surgery my surgeon decided to take out the whole nerve. He said he had never seen anything like it before… I have probably been extra concerned about my leg symptoms of late because they are so similar to my last experience. However, having heard your stories, I feel a weight has been lifted. As I always say, I am truely happy with my care team. I will discuss the issue more with my oncologist next week, of course.

    Best wishes to ye all and thanks again for listening and being so supportive. Thank you too Catherine for your continued support.

    I will let ye know how I get on next week.

    Anne :)

    #65992
    Annieo
    Participant

    Mary Sue,

    I have just re-read your message with a new realisation that you have been suffering so much from horrible pain, all this time!! My pain is definitely not as constant or as severe as yours, that I am grateful for. It can’t be easy for you. You are a real trooper :) .

    It is very difficult to live with that pain, on top of everything else that is going on for you.

    I hope 2015 brings you pain relief, and much more :)

    Anne

    #65993
    msue5
    Participant

    Did I mention I have Lupus?Here are 3 of us with autoimmune diseases and nerve pain. Interesting?

    Mary Sue

    #65994
    Catherine Poole
    Keymaster

    Mary Sue (and many others of you) You have been through “hell and high water” yet your demeanor is so pleasant and uplifting. You are a godsend to other patients here. Thank you for your important contributions!

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