Starting Immunotherapy

Hi  and a very warm welcome to the online community

I'm sorry to hear that your melanoma has spread to your lymph nodes. Could I suggest that you come and join us over in the melanoma group as there are quite a few people there having immunotherapy and they would hopefully be able to answer your questions.

To join the group just click on the link I've created and then choose 'join this group' on the page that opens. You can then introduce yourself, or ask a question, by selecting 'start a discussion' and if you want to respond to an existing post click on 'reply'.

When you have a minute it would be really useful if could pop something about your journey so far into your profile as it really helps others when answering or looking for someone with a similar diagnosis. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Edit Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

Perhaps see you over there in a while

x

Hi , I hope your first Immunotherapy went well. I had my 32nd dose of Pembrolizumab on the 18th. I also had an unknown primary until the biopsy of the largest lymph node came back as melanoma. It was too many lymph nodes in 2015 to do an operation. I see latchbrook has encouraged you to join the melanoma group. I hope you will post over there when you are ready.

best wishes

Hi KT,

thanks for your reply. The treatment was fine, just a shock walking into an chemo day unit.

so yes unknown primary, they know it’s melanoma but they never found the primary source, not even a PET scan found anything. So it’s possible I had a dodgy mole and it’s gone.

I Hope you’re feeling well. 

Did you have any side effects during the treatment?

sarah x 

The first time I had it I came up in a rash in week 2, arms, legs and torso so they delayed my second treatment by a week for it to calm down, I also had antihistamine and e45 cream recommended by the hospital help line, and prescribed for the next dose. I noticed that all my freckles disappeared. My hair went curly two months in then a few months  later went back to normal. Every dose I felt really tired for about a week which as time went on reduced to about 3 days of being slower, if I tried to ignore it and push through it took longer to get back to normal. When I started for the second time a year later no side effects other than feeling slower. My blood results all the way through were ok, ironically when I had a break at 9 months this second time my calcium level took a dive but it was back to normal after 3 weeks as they prescribed calcium and vit d tablets. 

I had diarrhoea tablets given to me in the chemo suite just in case on the first ever dose, but only needed them once a few months, I had been avoiding spicy food but had a takeaway curry at a friend’s house on that occasion, so that may have happened even if not on treatment. 

My husband always wanders off to get a paper after he knows where I’m sitting as he is very squeamish about them putting the cannula in, I prefer it that way as I don’t like to show that it hurts when they have several attempts, also as he fainted when our girls were born I think it best he’s not there for that bit. I always drink lots of water before I go in, to make things easier, but It’s sometimes the student nurses who have trouble. The more experienced keep talking to you so keep you more relaxed, it doesn’t work if they are talking about how nice the sunshine is !! 

I hope everything goes well for you there is a video about side effects and what weeks they have found they might start and stop. You can find a link to it from Melanoma Patient conference.co.uk, a consultant gave a talk at the 2017 and 2018 conference, I don’t know if you’ve ever been to one. I’ve been twice with my husband as I wanted to get as much info as possible. This year it falls on a treatment day in June, so I haven’t registered for it this year.

http://www.melanomapatientconference.co.uk/

https://youtu.be/3R3SFrNTCQk Dr Neil Stevens adverse events 

best wishes and hope all goes well.

Hi , I was just wondering how you got on with your immunotherapy?