Hi, I've just joined this support Group today.
Im waiting on the results of my Biopsy which are likley to confirm Stage 4 mellanoma. I currently have a tumor on my lung and another near my spine. I am hoping to start Immunotherapy soon and I'm keen to share my experience and connect with other people who are getting Immunotherapy treatment for mellanoma.
Hi Kdon24 and a very warm welcome to the online community
I'm sorry to hear that you are expecting to have a melanoma diagnosis confirmed shortly. Could I suggest that you join us over in the melanoma group where you'll find several people who are currently on immunotherapy.
To join just click on the link I've created and then choose 'join this group' on the page that opens. You can then introduce yourself and post questions after selecting 'start a discussion' and join in with existing conversations by clicking 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 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.
What is a Community Champion?
Hi Kdon24, and a second welcome from me, I’m currently on the immunotherapy Pembrolizumab for metastatic melanoma and there are others in the group who have had or are having ipilumamab and Nivolumab. Waiting for results and being in limbo can be so hard, I hope we can make it easier for you.
You can call the Macmillan Support Line on 0808 808 0000 (7 days a week, 8am-8pm) or contact them by email.
Thanks KT. That is the most likley treatment for me and we have Soooo many questions for our Oncologist.
Can I ask which medical profssionals you talk to about the treatment before and during, as Oncologists are very hard to get hold off.
Hi Kdon24, when I was first told that my targeted therapy Dabrafenib was no longer working I was already aware of ipilumamab and Pembrolizumab and my oncologist talked me through which she recommended for me and why, and gave me booklets on the side effects. The Macmillan nurse who was also in that meeting took me down to the day unit to show me where I would receive my treatment. The day unit nurses made sure I was aware how to report any side effects, ensuring I had a 24 hour number and a day time number, and a patient alert card to show to any medical person eg if ever I went to A&E as they need to know that I’m on immunotherapy as it affects how I might be treated/diagnosed.
The telephone number is either for my specialist nurses or the oncology day unit, they have on call doctors and access to the consultant oncologists. Every 3 weeks I’ve had blood tests and been weighed 2 days before my immunotherapy is due and every 6 weeks I’ve seen an oncologist, if I’ve had a problem my bloods only appointment is changed to seeing an oncologist. I’ve had minimal side effects but I have had an enlarged node show up on a scan. My hospital also has an app where I can put a follow up question in writing if I think of something I missed, or the nurses can help by either asking the question and feeding back, or getting the drs to phone back. The oncologists have a secretary which I have used to check on paperwork issues when my oncologist needed to recommend early retirement for me.
I hope I have understood your question correctly, and that the above helps. I have used Macmillan, cancer research, melanoma focus, and NICE websites and the melanoma patient conference for information that can help with what questions I might want to ask, or after reading feel more confident in what lies ahead.
Thanks, thats what I was looking for. I've recently advised all my customers that I need time off and I've already had 2 people contact me who knows people involved in this drug that are willing to talk to me.
Its good to know there is a good network of support available.
Do you mind me asking how many times you have had Pembrolizumab and what advise you were given on how often they would Scan you?
On Friday I will have infusion number 44, the plan is to change to a 6 weekly double dose on Friday, instead of 3 weekly, the plan last year was to stop in March 2020, that will be discussed again soon I think.
I have been scanned mostly every 12 weeks. When I was off treatment for a year (April 2017 to June 2018) due to being no evidence of disease they needed to do an extra scan 5 weeks after a scan that revealed an enlarged lymph node, due to the timing of biopsy’s and restarting Pembro. When things have been going right there has been talk of moving from 3 monthly to 4 monthly scans and then to 6 monthly scans I haven’t made it to that yet.
Thanks for sharing, it is incredibly helpful.
Have you been able to return to work/normal life in that time?
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