Hi everyone I would like to share my journey with you to give strength to others. In February 2002 I was diagnosed with Merkel Cell Carcinoma a very rare & aggressive cancer, it had metastasised from the primary in the middle of my chest to a lymph node under my left arm, stage two. I also have had SCC & BCC. My treatment for MCC consisted of Carboplatin, Etoposide Chemo & Radiation, jointly. I have ten radiation tattoos on my upper body. The trip wasn't easy. Thanks' to my carer Dr Peter O'Brien from the Mater Hospital Newcastle a member of TROG who had just finished trials on Merkel Cell Carcinoma, their trials & treatment saved my life. I can't thank the staff at the Mater Newcastle enough for their professionalism & compassion during my five years of treatment. Just when I thought the clouds had cleared, three years down the track. I went for my three year checkup, still clear. I was over the moon, you don't usually get that far with MCC, so I knew I was on the right road. Two days later my husband was diagnosed with Bladder Cancer - Muscle Invasive that was March 2005. My world just collapsed, again. I kept saying this can't be happening, not again. I felt over the last three years I had clawed my way up this steep dark muddy hole as I reached the top & felt the sun on my face the mud gave way & I fell right back down to the bottom of the hole to start the climb all over again. My husband had two operations the first operation was to remove the tumour, the second operation was nearly thirteen hours. He was lucky enough to have had a reconstructed Neobladder, that's where doctors removed 42cm of his bowel & made a new bladder joining it up to his internal plumbing. It's now three years since his operation. There's been a few hiccups along the way, so far so good. Another visit to his oncologist in December. Then, yes, there's more. January this year 2008 another three years on, my brother was diagnosed with Bowel Cancer, by the time he was diagnosed his cancer had metastasised to his liver. He passed away twelve week's later on April 1st, 2008. My grandfather died of carcinoma of the stomach, my father of Melanoma & my cousin of lung cancer, that's now six of us diagnosed with cancer. Update: My Aunt has just been diagnosed with Bowel Cancer, Metastasised to her liver. Diagnosed 7/2008. That now makes seven family members diagnosed with cancer, two with bowel cancer this year. Having a full physical checkup I can't stress this point enough. Early detection is the biggest cure. My aunt passed away 11/2008. The moral of this story is, early detection, that's why my husband & I are still here today, with the help of great medical staff & having checkups every year, especially skin checks, that's how my MCC was found, I was at the cross roads. I made the right turn on the road by having regular checkups . I hope you will do the same, go today, don't delay. Merkel
Update 2009: December, 2008 my husband developed another tumour he passed away 22nd August 2009.
Update Feb, 2011: It's 9 years since I was diagnosed with MCC & I'm still cancer free.
I have just read your story and I can relate to it I also was treated at the Mater and have so much praise them. I stayed in the Lodge and the care and attention I received was excellent. I had 12 months earlier lost my husband to melanoma which he refused to be treated for and it was horrible to see his suffering. I also have lost friend and relatives to different forms of cancer. Like you it is so vital to have any signs checked and treated. I wish you all the best for the future. Jenny
Hi Rachel, I'm pleased to hear Scott is doing so well, after being diagnosed with MCC. I wish him the very best on his recovery. I'm a 6 year survivor of MCC. I have been a member of George's MCC group for some time. It's a very supportive and informative MCC group to be a member of. Merkel.
Hi,I just read the posts by "Merkel". It sounds like you've had a long and arduous journey with MCC. I'm so glad to hear you are in the clear now! I will check into the trials that have been done at the hospital where you recieved treatment. I'm in the US and my stepfather(Scott) was diagnosed stage 4(liver metastasis). He had a "Spontaneous Remission" and has been in the clear for 9 months now. We are quite certain it will never come back as MCC is such an immune responsive cancer and once the immune system "recognizes" MCC it makes "memory cells" that can now go after it again in the future. That's the theory anyway. There have been many SR's in MCC and there has never been a recurrance to date that I have found. Here's Scott's story if anyone is interested: http://groups.google.com/group/merkelcell/web/late-stage-mcc-recovery?hl=enI'm writing to let anyone with MCC know that there is a wonderful support group at: http://groups.google.com/group/merkelcell It's an amazing and diverse group that is very active. The group is in regular contact with one of the leading authorities and researchers on MCC named Dr. Paul Nghiem. Dr. Nghiems website with the latest info. and papers on MCC is www.Merkelcell.org. You can also get to the supporty group from this site under "useful information/links". Be Well-Love-Rachel
I had a heap of tests done over the last month. First it started off with a simple X-Ray, followed by CT Scans, PET Scans, Bronoscopy, Fine Needle Biopsy and last a surgical biopsy to my neck. At first the prognosis was stage 4 Lung Cancer with 2 to 3 months to live, but after the surgical Biopsy was done, it turns out I have a very rare cancer called Merkel Cell Caricmona, which is suppose to be set off from the sun. ... I have worked nightshift for the last 9 years. I currently get sore (not really pain) in the right side of my chest and right arm. Some days both, other days not so., but by the end of the day I feel like I've had 6 rounds with Mike Tyson and very much fatiguied. (Spell?) Other times but not everyday day and only an hour or so at the most I get a few headaches and the back right side of my neck gets sore. Most nights I seem to sleep upright on the lounge as i seem to get a consistent dry cough if i try to lay down. The dry cough also happens if I over exert myself, such as walking. Not sure what is going to happen here on end. I have an appointment this afternoon with a Radiotherapy specialist, but unsure if its just a consultation or some therapy will be given to me? Steve
Thanks for you reply I think I am coping fairly well sometimes I think I am sure Ray went for the quality of life option and for him I am sure it was the right choice I don't think he could have coped with the constant round of doctors etc. I am off to the Doctor's this afternoon I alway get nervous when I have appointments and sometimes I am sure I dream up symptoms but I suppose that is a natural reaction. Hope you and your family are keeping ok. I try to get myself as busy and possible and have found very good support here. I only wish that people would understand that there are a lot of things I can't swallow and not tell me that if I don't eat more I will not put weight on. Somedays like yesterday I just feel like being on my own and doing nothing (and by that I mean nothing) all I did was read the Sunday papers and take my dog for a short walk. Take care Jenny
Hi Steve, I just read your post and I'm very sorry to hear of your MCC diagnoses. First, take one step at a time, don't look too far ahead. Your head and neck pain could be tension. I'd like to follow your progress and support you in anyway I can. There's a lot of help out there. I'm involved in advocacy with the Hunter Cancer Council and a member of Cancer Voices. Let me know how your radiation appointment went. Merkel
Hi Jenny, It must have been devastating for you and & your husband being diagnosed back to back with cancer. Your husband probably knew his fate & decided to go with quality of life instead of treatment. I hope your coping ok now. When you lose someone close they always take a part of you with them. Take Care, Merkel
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