CancerCompass message board discussion started by jusykitty on 4/1/2008 http://www.cancercompass.com/message-board/message/all,22595,0.htm Thu, 24 Jul 2008 00:00:00 GMT Thu, 24 Jul 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ anyone out there have merkle cell cancer? it is a cancer in the lowest layer of skin where the hair folical lives. those cells are merkle cells, anyone? jusykitty Tue, 01 Apr 2008 00:00:00 GMT  On 4/1/2008 jusykitty wrote:anyone out there have merkle cell cancer? it is a cancer in the lowest layer of skin where the hair folical lives. those cells are merkle cells, anyone? I have not personally had merkel cell carcinoma, but I assisted in the surgery to remove one.  It has a reputation for being very aggressive and in this gentleman's case it certainly was.  He is alive and very well, but it was quite a job to remove the tumor.  I work for a very busy dermatologist in Florida and I have only seen one in the two years that I've worked there.  It is a fairly rare cancer.  Do you have a merkel cell carcinoma? GotMohs Thu, 03 Apr 2008 00:00:00 GMT yes, i did it and i am very well also, it is agressive i had a tumor in the poridid gland when i was 21, it took 16hours to remove it, it has all the charistics of a merkle but back then they said it was not cancer. now at age 56 the tumor came back in my neck, where the gland was, it had no tumor marker until it arived on my lower left lung, i had a lung resection, all went well, and a neck resection, again all went well, my doctor did yearly blood tests and found the lung tumor, i found a specialist at the cancer treatment of america he did ajuviant treatment, 4 taxoter, 4 eurbutux, 32 head and neck treatments, 1 year of avistan and i am on tarceva.  yes it was alful, but with a great staff treating the whole person i feel like i am 35 again, i watch my food intake sleep well take suppliments and live very clean. my doctor did not even examine me this time the pet scan was great there is no cancer, all my docs just point to the heavens. it is something, i bless all the nurses and docs that helped me live, if your a nurse god bless you.  maybe you can answer this question....what relationship does merkle cell cancer have with poorly undifferance neuroinductine cells ? pardon the spelling thanks he didOn 4/3/2008 GotMohs wrote: On 4/1/2008 jusykitty wrote:anyone out there have merkle cell cancer? it is a cancer in the lowest layer of skin where the hair folical lives. those cells are merkle cells, anyone? I have not personally had merkel cell carcinoma, but I assisted in the surgery to remove one.  It has a reputation for being very aggressive and in this gentleman's case it certainly was.  He is alive and very well, but it was quite a job to remove the tumor.  I work for a very busy dermatologist in Florida and I have only seen one in the two years that I've worked there.  It is a fairly rare cancer.  Do you have a merkel cell carcinoma?  jusykitty Thu, 03 Apr 2008 00:00:00 GMT  On 4/3/2008 jusykitty wrote:yes, i did it and i am very well also, it is agressive i had a tumor in the poridid gland when i was 21, it took 16hours to remove it, it has all the charistics of a merkle but back then they said it was not cancer. now at age 56 the tumor came back in my neck, where the gland was, it had no tumor marker until it arived on my lower left lung, i had a lung resection, all went well, and a neck resection, again all went well, my doctor did yearly blood tests and found the lung tumor, i found a specialist at the cancer treatment of america he did ajuviant treatment, 4 taxoter, 4 eurbutux, 32 head and neck treatments, 1 year of avistan and i am on tarceva.  yes it was alful, but with a great staff treating the whole person i feel like i am 35 again, i watch my food intake sleep well take suppliments and live very clean. my doctor did not even examine me this time the pet scan was great there is no cancer, all my docs just point to the heavens. it is something, i bless all the nurses and docs that helped me live, if your a nurse god bless you.  maybe you can answer this question....what relationship does merkle cell cancer have with poorly undifferance neuroinductine cells ? pardon the spelling thanks he didOn 4/3/2008 GotMohs wrote: On 4/1/2008 jusykitty wrote:anyone out there have merkle cell cancer? it is a cancer in the lowest layer of skin where the hair folical lives. those cells are merkle cells, anyone? I have not personally had merkel cell carcinoma, but I assisted in the surgery to remove one.  It has a reputation for being very aggressive and in this gentleman's case it certainly was.  He is alive and very well, but it was quite a job to remove the tumor.  I work for a very busy dermatologist in Florida and I have only seen one in the two years that I've worked there.  It is a fairly rare cancer.  Do you have a merkel cell carcinoma?  I think what you were asking was what's the relationship is between merkel cell carcinoma and poorly differentiated neuroendocrine carcinoma?  Merkel cell carcinoma is a type of neuroendocrine carcinoma.  But normally when people talk about Neuroendocrine tumors they are talking about lung cancer.  Not sure if that's what your were asking or not. GotMohs Fri, 04 Apr 2008 00:00:00 GMT Yes thanks that was confusing to me, the cancer started in the neck,it went on the lung,it was detected on the lung first thru blood markers, but all the time it was in the neck undectected. Because blood markers go up only when on the lung. At first they called it lung cancer, i had 4 cemo's. It was after that when it showed up in the neck with a clinical exam. The docs here were preplex,it was the same cancer that was on the lung, i got no answers here, so i went to philly to c.t.c.a. they give me cat's of the neck alot, because that is where it could go undectected again. And of course pet scans once a year, and chest x-rays. That must be why the doc's here called it lung cancer then because the merkel cell are consistant with lungs....oh it gives  me a head ache, my docter is convinced without erubtux things could have gone badly, that was a new drug in 2005,so was avistan. Igot them all. Thanks for your answer that helps. jusykitty Fri, 04 Apr 2008 00:00:00 GMT Hello,My 80 yr. old father in law was just diagnosed with Merkel Cell Carcinoma 3 weeks ago.  At first, they said the tests came back negative (3 times) for Merkel Cell.  They said they knew it was a type of neuroendocrine tumor, but tests were inconclusive as to "what type" of neuroendocrine tumor.  Finally, more pathology reports after his recent surgery to remove the tumor showed positive for Merkel Cell Carcinoma.  He just had a brain MRI (normal results) and will be getting his PET scan results back later today, to see if anything has spread or not.  At first, before seeing the oncologist and having the skin tumor removed from his head, his internist told him (and me, since I went along to his appt) that it's a "very slow growing cancer and we're not going to do anything because of his age and condition- which is recently diagnosed Alzheimer's).  I was infuriated!  First of all, even though he didn't have the Merkel cell diagnosis yet, tests were still inconclusive & no one had said it was slow growing- the dermatologist still believed it was merkel cell at the time, even though the biopsy was negative.  This doctor went on to say that he should have the skin tumor removed and, if he still wanted a referral to an oncologist 8-10 weeks after surgery, he'd give it, BUT he'd really be against it if the oncologist wanted to "run a bunch of tests or do any treatment".  I couldn't believe what I was hearing! It's like this doctor was from the Dark Ages or something.  Even if my father in law is 80 and has early stages of Alzheimer's, it's certainly not up to the doctor to decide that he "doesn't need any CT tests because we're not going to do any treatment".  I told my inlaws to never go back to that internist!  I don't know if they'll listen, though.  Fortunately, they have good insurance and can go to any specialist they want without needing any kind of referral from the internist.His age and condition are definitely something to consider in having chemo or not, but that's up to my in-laws to decide, not up to their internist!Anyhow- yes, we were all told this is rare.  The oncologist said he's seen 4 cases of it in the last decade, so there isn't a lot of research done on treating it, consequently.Best wishes to you in your fight!Lisa lisaann Tue, 06 May 2008 00:00:00 GMT Merkel cell is not a slow growing cancer. It is extremely agressive and must be treated before it advances into the lymph nodes . Maybe your Dr. feels that at age 80 he is too old to tolerate the treatment.  I say to try to treat the cancer before you give up. If its too much than go to pallitive care. I am constantly surprised how older people tolerate cancer treatments.  They are stonger than we give them credit for. Geri28 Thu, 15 May 2008 00:00:00 GMT Hi,Thanks for the reply.  My father in law's PET scan came back negative- so the Merkel Cell cancer has not spread to any organs.  Since my last post, he saw an oncologist & is probably going to proceed with some chemotherapy. He wants to be proactive & the oncologist agrees.  I hope that he never goes back to the internist who gave us the bad advice and said "we aren't going to treat this".  My father in law did end up needig a second surgery on the original site on his scalp- that's actually happening today as I write this.  We're hoping they'll get all the cancer this time.  He may need a skin graft after this- they're going to decide today if he needs it or not.  If so, that should be in 2-3 weeks, but first, they'll need to check the biopsy to make sure they got it all. lisaann Thu, 15 May 2008 00:00:00 GMT My husband survived Merkel Cell Carcinoma after having an egg-sized tumor removed from his left hip 5 1/2 years ago. They checked the sentinel nodes, removed them and tested, they were cancer-free. He has just been (3weeks agao) again been diagnosed with it. This time there was a lemon-sized tumor under his arm (has now been removed) and they cat-scanned for more and found 4- 3cm sized lesions or tumors on his bile duct, liver, kidney, and decending left colon. These have been very painful and he had to have 2 stints put in his bile duct to help the bile release so he could eat and not be vomiting and nauseated all the time. He is on Chemo, his bilirubins were up to 12, then 7.2 when Chemo started, they are now 4.7. They really don't like to do Chemo til they're down to 5 but as you know it is extremely agressive so they started it. He is receiving the shots that stimulate his bone marrow to make more white blood cells as his are very low and they are administering TPN because he has been so dehydrated. He has lost 33lbs in 3 1/2 weeks. He is 60 years old, was a lifeguard in the '60s and we are both Christian and very committed. gina grammakitty58 Tue, 10 Jun 2008 00:00:00 GMT I am a survivor of merkel cell cancer, also founder of a group of some 225 plus survivors of MCC at Google Groups.  This coming August 2008 will mark three years for my survival.  Please take a moment to visit our group, including discussions and resources specific to this very rare cancer. Georgehttp://groups.google.com/group/merkelcell Merkelcellsurvivor Thu, 19 Jun 2008 00:00:00 GMT  On 4/1/2008 jusykitty wrote:anyone out there have merkle cell cancer? it is a cancer in the lowest layer of skin where the hair folical lives. those cells are merkle cells, anyone? Hi, I had merkel cell carcinoma six years ago. I was stage two, the cancer had metastasised to a lymph node under my arm, 2cm. The tumor was  just above my chest in the middle. My treatment consisted of Chemo, Carboplatin & Etoposide + Radiation all at the same time, no operation to remove the tumour was done. In the past I also have had SCC & BCC. Six years on, I'm now a survivor of Merkel Cell Carcinoma. I wish you all the best on your journey. mccsccbcc Sat, 21 Jun 2008 00:00:00 GMT