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 ... View more

Well a fun time was had by all while I was in Brisbane. The weather was a bit crappy when we went to Seaworld but it wasn't pouring down rain just the light miserable stuff just to be annoying. Movieworld the next day was fantastic. Couldn't have had nicer weather. Friday was spent all day at the hospital as another PET scan was ordered. Tumours have grown which is understandable and some more lymph nodes are now affected. We went to Outback Spectacular that night and we all just had a blast. If you ever get a chance to go. Sunday night after we came home I went downhill again in chronic pain. I spent the weekend before we left in hospital with similar pain and all they did was dope me up and sent me home the following day with nothing. I thought they would have given me a script for some painkillers. I put up with the pain on Sunday night and cried myself to sleep.my husband phoned the cancer care nurse on Monday as this stage of my illness is all new to us as previously you wouldn't have known I was sick. She was lovely and got us in touch with the Pallative care nurse who got us on the straight and narrow and knew exactly what was causing my pain. In the meantime I had my doctors surgery nurse come to the house and I haas given a very strong injection of morphine. Well a zombie I was for the rest of the day. When we found out that that I didn't need the morphine all I needed was steroid tablets it was a relief. Today I should be painfree and I was even driving my car yesterday. The radiotherapy shots worked on my hip and I might even be able to dance tomorrow night at my Hippy Birthday party. Preparations have been much easier as I feel like I'm back to normal again. My heart does go out to a very dear friend of mine at the moment though as she lost her dear husband on Monday from Pancreatic cancer which he has battled the last couple of years. Well must go and get the kids organised as life goes on today. ... View more

Thanks for the thoughts. I have to go to Brisbane next week for a week of Radiotherapy so the family is coming this time and we are going to do lots of fun stuff. My 13 year old cried at first as she is so dedicated with her schoolwork that she freaked out. Her teachers are all fantastic and just want her to have a great time. I have to do a list of fun things to do and I've been told Seaworld is top of the list and I want to go to Outback Spectacular. I just have to now find the energy to pack the bags. ... View more

I have three children ranging from ages 21 - 4. I have been honest to them from the start with my two older girls and explained to my 4 year old at his level so he would understand. Only a month ago I had to tell them that I'm now not curable and will pass away. It was the hardest day to explain to my 4 year old that Mummy is going to be a star in the sky and he will have to go outside at night and give me a big wave. He is a very bright 4 year old. Even though times are tough it has helped my 13 year old to cope knowing that she knows the truth it has helped her with trust. ... View more

Hi Merkel, Mine started on the right side of my scalp. It attached itself to a lump which I had on my scalp for over 12 years which had been tested and was only a lump of fat cells so when it got to the stage I couldn't even sleep on that side I went to the doctor and said I wanted the lump removed. They sent me for an ultrasound and not knowing that it was Merkel removed it without clear margins. I'm being treated at the Royal Brisbane. They are all great but I just hate the waiting. I can phone them at anytime though and if I start to have symptoms which I don't think are normal I can go to my own Dr and he can arrange a ct scan, which I think I might do today as I am having blood in my phlegm in the morning which doesn't normally happen to me. I have a permanent strip of hairless on my scalp which I joke about with the kids. I joke a lot just to keep me sane. My husband said he would prefer me to have no hair and have me alive. He is just wonderful. Mrs Murt ... View more

Hi Merkel, Mine started on my scalp then spread just outside my treatment area to a lymph node in my neck. The second round of treatment wasn't successful as the cancer completely took over the lymph node and changed it to a tumor instead. I had to have a neck dissection over Christmas with the results being that it has now invaded the vein and no clear margin. I have had to wait again for another three months for another scan. It's the constant waiting the three months every time which I'm finding hard. When I got my results after surgery the first Oncologist said that there was nothing more they can do for me. I was very surprised when I read that yours had spread to the lymph node under your arm. When I was first diagnosed they were worried about me that mine had spread to my armpit and they said that if it had there was nothing they could do for me and I might live 12 months. Lucky for me then that it had stayed localised. I don't dwell on everything. Life is to precious for that. I've tried to stay as normal as possible. ... View more