Merkel Cell and Me

[Mrs_Murt]

Just would like to say Hi and if there is anyone out there also with Merkel Cell Carcinoma. Life has been a whirlwind since diagnosis and this is the first time I've seeked to a forum. It's so hard sometimes to talk to loved ones. I got diagnosed just over a year ago and still currently have my cancer. I'm 43 and have 3 children so I don't really get time to even think about having cancer. It's really only during treatment that it seems real.

[PeterT]

I would like to say Hi to you. I also have Merkel cell Cancer I can understand your comment about your life being a whirlwind,I was diagnosed aprox. 1 month ago after being on holidays up North in Darwin and Northern WA, to cut a long story when I got home went to Docs. he had never seen a Merkel before thought it Cyst sent it away had it Diagnosed now my life has been turned upside down. Please how are you going now OK I hope? Iam very lucky mine is only 1st stage and recieving therapy after 2 operations. Regards Peter

[Mrs_Murt]

Hi Peter I have been battling this since December 2011. In April this year I was told that I'm now in curable and I've only just turned 44. I've had two rounds of Radiotherapy as it had came back after the first round just outside my treatment field. I had another round of Radiotherapy only to then be told that it wasn't successful. Over Xmas last year I had to have a neck dissection to remove the lymph node that it had spread to. That certainly was not fun. The cancer had completely taken over the lymph node and had changed it to a tumor and then the results on that were that it had then invaded the vein so of course it spread through my veins and has gone into my liver, hip bone, lungs and some more nodes etc in my stomach. My tumor originally wasn't huge but when they cut it out they didn't realise what they were dealing with as it had attached itself to a prior lump that I had had on my head for over 12 years and I only went to the dr to get it removed as it started to get really sore. I had the lump tested years prior and was told it was just a lump of fat cells so when I got told 2 days before Xmas that it was Merkel Cell I disregarded it at first as I had never heard of it but when the dr said I had to go and have radiotherapy ASAP it clicked that I had cancer. Lots of tears after that. When they removed my lump they didn't get that clear margin and my life has now been drs appts and hospital visits. I've always tried my hardest to have a positive outlook as my main positive is that my family can say goodbye to me and visa versa. I can make the memories but just lately I've struggled emotionally. I have a great Pallative care nurse who is just amazing. I'm in a lot of pain now struggle everyday. I attempted Pallative chemo and they treat Merkel Cell the same as Small Cell Lung Cancer so we get 4 rounds only and each round is over 3 days so all up it goes over approx 3 months. I had 1 round and wasn't sick luckily but ended up in hospital a week ago as I got an infection in my thumb and they discovered by a blood test that my white cell count was extremely low and I had no immune system. Being in the hospital isolated broke my spirit really bad and I have now decided to not continue with the chemo as my life now is too precious and I want it spent with my family and friends and not go through that time knowing that if successful with the chemo over that time would maybe extend my life by a few months it really wasn't worth putting myself through the next few months of hospitals and drs and the isolation after each round so hopefully you don't get sick while your immune system is down. I have a bucket list and would like to do as many things on that possible. I'm just in the process now of getting my pain under control which has been a bit of a roller coaster at the moment but hopefully it will be soon. I'm extremely happy for you that yours has been caught early as this really is a nasty cancer to get. Take each day as a precious day and while I can if there is anything on a patient to patient level with Merkel that you would like to chat about please do. Drs can get very medical but we are the ones living it and as they struggle themselves with Merkel it makes it hard. I was just unlucky to get dealt the short straw. Take care Mrs Murt

[PeterT]

Hi hope all goes well for you in the future, and wish you all the luck in the world, what hospital are you under?, and what part of Australia do you live in?, i live in Bendigo Vic. and travel to melb. every visit hope to be transfered to the hosp. here soon. regards peter.