Merkel Cell Carcinoma

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Hi All, I was wondering if there is anyone with metastatic Merkel Cell Carcinoma? I'm struggling to find anyone  with it. If you're out there I'd be interested in your treatment. 

  • Really pleased things are moving along for you both. The waiting is terrible isn’t it? You must be so relieved. Thank you re tomorrow, it’s a little daunting. My husband is being incredibly brave about it all. I was very emotional yesterday but has a word with myself as I need to be brave too! Will let you know how his first chemotherapy goes. Take care. Love Daisy xx

  • Hi, surgery was the original plan followed by radiotherapy but unfortunately surgery wasn’t possible even with keyhole. His oncologist has said chemotherapy is the best treatment with the hope of shrinking the tumour. He may also need radiotherapy although the oncologist has also mentioned immunotherapy. Really sorry to hear everything that you’re going through. We remain positive x

  • How did your husband's first chmo go ?My husband had had the tumour removed from his scalp and a skin graft today he is now sleeping after a dose of liquid morphine and is on intravenous Paracetamol The recovery nurse said the team were in awe of how he coped He had the maximum amount of local anaesthetic and it wasn't enough Even the surgeon said it was a stressful experience all round Still it's done He is being kept in overnight We will come back next week for the dressings to be changed The skin from the graft came from his thigh In 2 weeks we meet with the radiologist to discuss the treatment schedule John had a sandwich and some crisps when he came back which I was happy to see When he is off his food I worry Been a long day seems later than quarter to four We arrived at seven thirty and he didn't go down to theatre until just after twelve He was away an hour and a half It's a lovely quiet room and the catering staff have been keeping me supplied with coffee and biscuits In fact I've had too much coffee I asked for a lemon and ginger tea as I was getting hyper I'm going to get my Kindle out now Everthing crossed for your husband Love from Wilbert xx

  • Hi Wilbert, it’s so lovely to hear from you. I have been thinking of you both. I’m so pleased your husband has had his procedure and it’s gone well. It sounds like it’s been a very long day, I’m pleased you’re being well looked after too. My husband’s first chemotherapy session went ok thank you. It was a long day, or at least it seemed like a long day. It was a nightmare trying to park at the hospital. I knew I couldn’t go in with him for his treatment but wanted to wait with him until he was called through, but I couldn’t park so I had to drop him off at the door which really upset me. He’s having two different types of chemotherapy as well as taking chemo tablets at home after each cycle for a couple of days. So far he’s had no sickness, although feels a bit tired. He’s eating really well and drinking the required 2 litres of water every day (I think I would struggle with that!) along with tea and coffee. He’s still working which is keeping his mind occupied and it’s good that he doesn’t have an energetic job. His next treatment is on the 13th June with pre-chemo bloods two days before. I hope your husband has a restful night, and you too. It will be nice for you to have him back home tomorrow. Take care and keep in touch and I will do the same. Sending much love. Daisy xx

    • So pleased your husband's chemo session went well Fingers crossed it continues the same We live 25 miles from the hospital and I don't drive at night as I have glaucoma I had planned to stay in a b&b close to the hospital but the staff offered to put a fully reclinable chair in my husband's room so I could stay the night and they got catering to cone in and take a breakfast order to add to my husband's The staff have been brilliant The recovery nurse popped in this morning to see how he was doing John had oxynorm syrup and intravenous paracetamol so he was comfortable and relatively pain free The dressing on his thigh where they took the skin for the graft has to stay on 2 weeks The scalp dressing which is stitched on will be changed and assessed by the specialist wound nurse next week We will have a date to see the consultant radiologist next week to discuss the radiotherapy regime I can understand your wanting to wait with him The nurse who took John to theatre said come down with him for company and a bit of a walk which I did Lots of love to you both xx
  • Thank you Relaxed️ It’s quite a journey to the hospital for you, that’s so lovely you were able to stay with your husband. Our journey to the hospital is about 20 minutes so not too bad at all, it’s just the parking that’s a problem. Has your husband been discharged today? I hope you’re both back home and have a quiet and peaceful weekend. It’s been really miserable weather here today, hopefully it will pick up over the weekend. I hope John’s not in too much pain or discomfort from his surgery and his radiotherapy appointment goes well. Take care, love to you both xx

  • John came home yesterday afternoon Bit of a disturbed night I was making tea and toast at 4 am The Oxynorm which he had a 6am.gave him a headache so paracetamol and more tea and toast A pain  killer that lists headache as a side effect isn't the best We are sticking to paracetamol He has been better today but because the dressing on his thigh is bulky he is wearing holiday shorts It's our 56th wedding anniversary today John had ordered the yellow roses and white carnations he always sends me and they arrived at lunch time He isn't into great romantic gestures but on our anniversary he always send me the flowers I carried in my wedding bouquet He likes an Italian liqueur Grappa so i ordered a bottle on  Amazon and it arrived today We have an appt Wed to discuss the patch of cancer in his ureter which is lasered  very 6 months and on Fri to have the scalp dressing changed The thigh dressing is changed in 2 weeks John is not happy about not being able to shower daily When he complains I sniff and say do you want to borrow my Jo Malone at least I get a laugh I hope the next chemo goes well for your husband Lots of love  Celia    

  • Evening Celia, I hope John is feeling much better and the paracetamol helped with his headache. Congratulations on your 56th wedding anniversary Two hearts That’s so wonderful and how lovely to be able to celebrate back at home. Your flowers sound beautiful, I love yellow and white flowers. Hope the appointment's go well on Wednesday and Friday for John. We have had my son, daughter in law and grandson over for the day today. It’s been really lovely and a great distraction from everything that’s going on at the moment. We had a BBQ which was very nice followed by strawberries and clotted cream ice cream….very naughty but absolutely delicious! Keep in touch, it’s always lovely to hear from you and it’s good to be able to talk to someone who’s going through the same thing. Love to you both. Daisy xx

  • The apot with the urology consultant was ok He said put things on the back burner for 3 months and he will review John and change the stent The dressing on his scalp was removed today.and the graft has taken well and is healing A new dressing was put on which is more comfortable as it isn't stitched to his scalp The thigh dressing stays on another week I had redone the over dressing and got a well done as the wound has stopped leaking Sarah the nurse said she would leave it We see the consultant on  Monday hopefully to get a date to see radiology Your BBQ sounds the perfect antidote to all the stress Clotted cream ice cream sounds divine and why not be a little naughty A hedgehog came to the little feeding  station in the garden this afternoon as they are nocturnal I was surprised A friend said it is possibly pregnant or unwell and I guess pregnant as it ate well and I'd quite plump There is a local hedgehog rescue who say I need to put it in s high sided box and message them and they will collect her I have box and gloves at the ready Watch this space Take care love to sll the familynWilbert

  • Another bump in the road the surgeon thinks the lump on John's scalp is a local.Merkel spread He is arranging a pet scan to see if there is any distant spread He was positive tho if its local then radiotherapy and or surgical removal If it's distant targeted immunotherapy On the plus side he us happy with scalp graft and it no longer needs a dressing and John can shower with cling film over the thigh dressing Thigh dressing comes off Friday He no longer has to sleep upright which is a relief He had been sleeping in the recliner chair. First time since it all began he's a bit down but having a doze at the moment We had to be 6 and leave home by 7 to get to the hospital as traffic is horrendous on the M60/62 It's 23 miles and we only just made it for 8 45 appt I'm encouraging him to hold onto its treatable I'm sure when he wakes up his mood will have lifted He says its just more stress for me I can stay positive in front of him and have a little cry in the shower Good luck for 13th

    Lots of love