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  • #22296
    msue5
    Participant

    I went for bi-annual skin check last week with Dem/Onc and pointed out what appeared as BCC.It s about 1/8 inch from corner of right eye. To my surprise and Derm/Onc it turned out to be SCC arising from actinic keratosis. Have to have Mohs surgery. The path was done by a Pathologist from Boston University who has a good reputation. Just nervous about anything being done so close to my eye. This will be my 4th SCC 2 of which came from Zelboraf. Otherwise Onc appt Jan 12 to be followed by PET Scan. I have 1 remaing node in Rt axillary area that grew some on last PET. 1/12 yrs stable from Yervoy! Now skin checks moved up to 3 months for next 2 yrs.

    Mary Sue

    #66014
    Catherine Poole
    Keymaster

    You might want to have a plastic surgeon do the closing of the MOHs. I had a squamous cell on my cheek and after the MOHS went to a plastic surgeon for the surgical closing. You’d never know it was there! I totally understand your anxiety about the location! Let us know how things go for you.

    #66015
    Annieo
    Participant

    Hi Mary Sue,

    I had to do a bit of googling to fully understand your post! I did not know what SCC and BCC etc. stood for. Now, I do :D

    I’ve noticed that you have an upcoming appointment on Monday. Best of luck with it. Keep us posted. :)

    Anne

    #66016
    tbeau
    Participant

    Hi Mary Sue

    I follow your posts regularly. Please keep posting. I wish you the best of luck with the surgery. I agree with Catherine that a plastic surgeon can work wonders. Good luck with your upcoming appointments.

    #66017
    msue5
    Participant

    Thanks everyone. Turns out my MOHS Surgeon is also a plastic surgeon who specializes in facial leisions . Also have had 1 BCC done by him and he did a great job. I am worried about an AK turning into SCC. At my skin check a few AK’s were identified and this one I’m having removed appeared to be a BCC but pathology said SCC arising from AK. Now I’m wondering if I should have some more AK lesions biopsied. I also wonder if Zelboraf is the culprit. I was on it only for four months but developed 3 SCC on it overnight. I went to bed without anything and woke up the next day with 3 wart like lesions that were excised and biopsied that day. So Z was stopped. I have also read where they are finding new melanomas on patients who took Z. I have always liked my Derm/Onc because he is conservative about biopsing. He takes pics if anything new arises and we watch it. Only 1 time was something biopsied because of change. I will discuss this with him but wondering if anybody that was/is taking Z is having problems like mine. It will be 2 yrs in April since I stopped Z. I would love to hear from anyone who took Z and developed SCC. Yes my Onc appt is tomorrow and will probably have PET Scan since last one the needle slipped out of the vein partway through injection and most of it ended up in rt axillary bed where I have a 2.5 cm node that showed a small amt of growth. Thanks for thinking of me and hope all is well as can be for everyone.

    Mary Sue

    #66018
    VanessaGirl
    Participant

    Absolutely. I believe my father’s oncologist explained that Braf inhibitors can increase the chances of developing Squamous cell cancer greatly. However, I believe MEK can decrease this risk, which is another positive side of the combo. Did you have MEK with the zelboraf?

    #66019
    msue5
    Participant

    I did not have MEK as it was not approved at the time. I definitely would add that if I ever find myself back on a BRAF inhibitor again. I have heard that it cuts down on side effects and helps curb the development of SCC. The side effects from Z for me were getting intolerable about the time I stopped it. Hope your father is doing well.

    Mary Sue

    #66020
    buffcody
    Participant

    I also had a lot of difficulty understanding the initial post (and a little more) as abbreviations were being used that I was not familiar with and Google or my inability to use Google to its maximum capabilities did not help. I’ve been on this forum for 2 1/2 years, and my acronym translation abilities were not up to the test today. I’d appreciate more spelling out of terms, though I do know now what a subq is. Not always. We have people frequently joining our Forum. They may need more translation than even I still do.

    Thanks,

    Frank

    #66021
    Catherine Poole
    Keymaster

    MarySue is a nursing professional so that explains her language! We do have a glossary on the site so you don’t need to google: http://melanomainternational.org/melanoma-facts/glossary-of-terms

    But briefly, she talks about AKs or actinic keratosis (precurser to non-melanoma skin cancer, BCC and SCC, basal cell carcinoma and squamous cell carcinoma. Z is zelboraf I think..

    #66022
    msue5
    Participant

    Sorry for the abbreviations. Yes I am a retired nurse and I should not assume everybody knows them. I should know better. I used to be the one at the bedside explaining in lay terms what that Dr. said in his 2 minute visit. On the very first day of nursing school we were taught don’t assume anything. It makes an a** out of you and me. I can’t tell you how many times in 33 years of hospital nursing that phrase changed the outcome of a patients treatment.

    Mary Sue

    #66023
    msue5
    Participant

    Had my Oncology visit yesterday. A mutual decision was made to not scan for 3 more months. Still have a 2.5 cm node in rt axillary but it is slow growing and not felt on exam. I thought I would find this hard but I actually feel so much relief. I can do without the stress it brings me for approximately 10 days where I can’t eat, can’t concentrate etc. I am being referred to a pain specialist to find some help with my ongoing nerve pain in lt leg and groin.I have had 4 major surgeries to that area and am on Neurontin which helps some but still have at least 2-3 days every week where I am incapacitated. The pain started suddenly on Christmas Day 2013. It is triggered by activity and is in scars going back to 2011. Sometimes all I have to do is move my leg wrong and I get immediate pain starting in old scars and progresses to groin/ pelvic and eventually my entire lt leg. I also have started having some rt leg pain which also feels like nerve pain. It is a straight line of pain down my outer thigh. I also need help with managing Abdominal muscle spasms every time I move. My husband is having rt knee replacement in a few weeks. Luckily we have great kids who will help with anything.

    Mary Sue

    #66024
    Annieo
    Participant

    Hi Mary Sue,

    I really feel for you, having to go through the amount of pain that you are going through right now. I feel sad for you and wish I could help. All I can do is say, that on a forum like this, you can share the down times too with us. Please don’t feel alone. We are all well skilled at putting our best foot forward each and every day. We appreciate every day. We recognize the joy and the beauty in life and we aim for happiness. However, inevitably we face challenges. You are dealing with more than your fair share of challenges Mary Sue. Here is a place where you can find comfort and support for the tough times. We all can :) There has been many a time when you have been a great source of comfort and support to me!

    Is there a chance that the nerve pain will settle down over time? Wouldn’t that be great!

    I saw my oncologist yesterday. He seems pretty sure that my pain is due to nerves rebooting themselves after my various surgeries. It has been decided that I will have my leg and groin MRI’d in two to three weeks, just to get a clearer picture as to why I am having pain and discomfor. I have also been given a prescription to start on Lyrica. I am very interested to see what effect the Lyrica will have on my leg. My pain is not as severe as yours. But that said, my leg is very heavy and weak, constantly since October. This greatly effects my mobility and triggers my back pain.

    I have recently read that nerve pain can cause muscle weakness, so I have been thinking that maybe my heavy leg is due to neuropathy, as is possibly my leg pain. I would be over the moon if this heavy leg finally disappeared simply by just taking Lyrica! I always presumed my the weakness was due to my arthritis or maybe weakness from many surgeries. Maybe I’ll never know.

    I am still pondering on your own pain Mary Sue… Sorry if I’m repeating myself here but when I had my surgery last year for a deposit which was resting on a branch of my femoral nerve (I think that’s what the nerve was called) the surgeon said he had taken the whole nerve out during the surgery. I’m wondering would that be an option for you?? Could your damaged nerve/nerves be surgically removed? It might be worth checking out. If mine could be taken out why couldn’t yours??

    I am so glad you feel relief about the 3month wait for scans. I felt so good yesterday after my appointment. I think I had been bottling up a lot of upset and anger since my previous appointment in November. This was simply because I had left that appointment completely confused. I have promised myself that I will never leave an appointment again without having complete clarity. Yesterday, all my questions were answered and a plan was made to schedule an MRI. As you said Mary Sue, with a plan comes relief.

    I wish you comfort and peace of mind for the months ahead. I think you are a superhero :D

    Anne

    #66025
    Annieo
    Participant

    Also Mary Sue,

    Don’t be worrying about the abbreviations!!! There’s always Mr. Google for us amateurs ;)

    #66026
    Catherine Poole
    Keymaster

    Mary Sue,

    I am not sure if you would be open to this idea for your nerve pain, but have you looked at acupuncture? I’ve seen reports of this working when traditional methods didn’t. I too am concerned about you dealing with all of this pain!

    #66027
    msue5
    Participant

    Thanks Annie and Catherine. My leg feels heavy also but only at the top where I can feel a lot of scar tissue. I have limited range of motion in my lt thigh and PT did not help this. It did help strengthen both my legs. As far as my Femoral nerve I was tested for Femoral nerve entrapment prior to my last 2 surgeries. It was inconclusive and apparently hard to diagnose. I’m hoping some MRI imaging may be ordered because it was after these surgeries that it became a daily problem. I really feel this is a scar tissue issue but why it would happen in my oldest scars is a puzzle. I hope Lyrica works for you. Like Neurontin it will take a while to work(6 wks) it was like a miracle at first but that wore off after a while and the dosage had to be increased where I had some relief again but was short lived. I had an adjustment period where I was sleepy all the time. And Catherine I meant to ask the Oncologist about acupuncture. Will see what pain service consult says. My Oncologist warned me that Pain service might just balk at treating Cancer patients and tend to hand it back to the Oncologist. That has been the case for quite a few patients of his so he is making some calls to make sure this doesn’t happen. Annie hope your problems are solved also.

    Mary Sue

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