After feeling like i could start my life again. I'm feeling a bit deflated!

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Was diagnosed with stage 2 melanoma back in March had mole removed from my back then went on to have wide Excision and a sentinel lymph node biopsy. Shock to say the least when i was told they'd found a small amount of cancer in one of my lymph nodes which they had removed. I then went for a full body Ct scan and Mri of my head which thankfully after another wait all came back clear! I thought thank god i can start to focus on normal things again i did know because now my stage was 3b they would probably offer me some treatment.little did i know it was every 3 weeks for a year and scans in between. Is it ever going to get easier to handle and can i live a normal life while having treatment would love to hear from anyone else with experience of all this and any advice would be most welcome. Thank you! 

  • Hi Moggy and welcome x  your journey sounds like it may be like mine. Diagnosed March 2021, started my year of three weekly Pembro (my particular immunotherapy drug) in September last year and just about to have my last one soon.  (Some oncologists give a double dose of Pembro every 6 weeks but my consultant wanted to minimise the risk of side effects so stuck with 3 weekly)

    Yes it will get "easier" to handle.  Right now there's so much info in your head, you're still adjusting to the diagnosis and the treatment is looming up ahead.  I hope you get invited to a pre-treatment visit to the place you'll have your immunotherapy.  Mine was my local chemo centre (Dorchester)and they have been fantastic the whole year.  Your have your bloods done pre each dose (your local health centre can do them as long as they get into whatever computer system your local NHS uses) , hopefully you'll get the same day every week.  Turn up, blood pressure, pulse, temp and weight is done every time. Lateral flow test at home prior to you going in may be asked for- you can get your tests for free via NHS.  They order the drug once you've turned up and they insert a small cannula into a small vein in your hand/arm and set some saline going to keep the vein open, immunotherapy drug Pembro takes half hour to run through, a quick 10 minutes of saline flushed through and you're done. Obviously I don't know which drug(s) you are going to have, some may take longer, some are tablets.

    After a few sessions I began to not think about the melanoma at all until the bloods were due to be done, then two days later had the treatment then out it out of my mind til three weeks later!  My two side effects have been arthritic hand joints and constipation--neither needing medication.  I also became extra tired about a week after the drug.  If your side effects are minimal then yes you can carry on working, some in here have done just that.  You do adapt to this " new normal" as I call it and you will stop having your entire brain full of thoughts of melanoma!

    Take a book, newspaper to read during your treatment or doze. Tea/coffee and cold water is usually available too.  As for the scans well again I forgot about them in-between them. (Head MRI and body CT for lymph node checks).  That's me so far and I remain NED( no evidence of disease).

    Remember there's no question too silly to ask on here, everyone has been friendly and supportive too.

    Your normal life will resume after a while I hope as you adjust to this change in it, the most important thing is you and not the melanoma after all however worried we get. I am still able to have a good cry every now and then about the fear of it returning.

    Good luck for your treatment xx

  • Hi Moggy, my mole was found on my scalp in March, my excision was in May, I was diagnosed stage 2TA and in July I had my WLE and SLNB. I get my results on Tuesday and feel very apprehensive, sorry I can’t offer any advice as I’m a few weeks behind you but I am thinking of you and I thank you for your story, as it gives some insight as to what may be in my future, I wish you all the best and fingers crossed we will get through this xx

  • Hi Alottment lover, Thank you so much for taking the time to send me such a lovely reply your story does sound very much like mine. You sound so positive and like you've got this! Can i ask you have you taken any holiday's while on the treatment? I have a massive family celebration in November on a cruise and I'm so worried about not being able to make it if the treatment makes me ill my consultant says sickness is quite rare but i do suffer with multiple joint arthritis so may have some issues with that. How amazing your almost through with your treatment and fingers crossed you continue to be cancer free. Xx

  • Hi Nixiepixie, Thanks for your reply and I'm so glad my story has helped you a little. All i can say to you is whatever the outcome the care and treatment that's available now is second to none and this cancer is treatable you've just got to try and stay strong talk to someone you can rely on for support as that also helps massively no point in bottling things up. Please keep me posted on how you get on. Good luck Xx 

  • Hi Moggy, I've not been working full time for ages  due to severe depression which I've had on and off for years. As for a holiday-no I've not had one for years but there's no reason why you shouldn't go if you're feeling well.  Are you Braf +? If you are you may have targeted treatment instead of Pembro.  The issues with immunotherapy is that side effects can occur at anytime sadly.  They do give you leaflets listing the side effects and emergency contact numbers too.  I've never had to use them.  Based on arthritis being an autoimmune disease and the drugs being immunotherapy I really don't know if it would worsen your arthritis. Ask your consultant or specialist nurse before treatment.  I'm sure if all is fine they will happily jiggle your 3 weekly dose if dates for your cruise coincide.

    I was initially devastated inspiring last year, cried so much. My 21 year  old daughter and have share black humour (I've been a palliative care nurse for most of my life!) so we joked about and planned my funeral service. I love music so much(in my 20's in the 80's) so I picked some songs and my daughter said she write my eulogy totally using song lyrics!  We all cope in different ways!

    Once I started my immunotherapy and got used to the routing I began to get there a little earlier, it's only at the local county hospital so not too far. I always have a coffee and croissant and look round the charity shops.  As a person I'm probably  fatalistic and just think what will be will be plus I began to resent the melanoma fir taking over my life which is why I was able to compartmentalise it.  You'll be fine once it starts hon, really. The initial shock does wear off usually and you take it in your stride. I do wear factor 50 sun cream always and long trousers and ling sleeved shirts and a hat everywhere now and look jealously at people wearing skimpy clothes!

    Are your whole family going on the cruise? Where will you be cruising? What a great adventure to look forward too. Xx

  • Hi, did you manage to go away on your cruise in November?  I hope so and hope you are getting through your immunotherapy without trouble. X