I have just joined this community as I have been recently diagnosed with, what I thought was CUP. I am a 57 year old male and 6 weeks ago found a lump under my arm (1 x 1.5cm). Within 3 weeks I had it removed and the biopsy came back as a secondary cancer of melanoma origin that was not in my lymph nodes. Since then I've had blood tests (full and tumour markers) - CLEAR, 2 full body skin checks (which found a melanoma level 1 which apparently because it is level 1 cannot be my primary), neck to pelvis CT scan - CLEAR, and a full body PET scan - CLEAR. They cannot find a primary melanoma. I've read that it is possible that my body may have destroyed the primary but find that too good to be true. I start a 12 month treatment plan of immunotherapy(Nivolumab) in January and am struggling to get my head around this all. Due to by situation being quite unusual my doctor / surgeon / skin specialist and oncologist are all finding it difficult to give me a concrete prognosis and my mind is just running wild. Also due to my unusual situation I'm finding it extremely difficult to find anyone to talk to in a similar position to myself.
I have read others posts on this forum and find them extremely honest and informative, so I sincerely thank you all for that.
Hello Eintracht, I must confess that in July 2015 (at age 56) when I had my diagnosis of melanoma with no primary, at first I laughed in disbelief, then my next reaction was to wonder if the primary wasn’t found would I be in more danger as it hadn’t been found or should I be very relieved that it has probably gone, that my body has dealt with it. (I must have read the same literature) I felt more comfortable in not worrying about it once treatment started that would be systemic and work on the whole of my body, which is what your Nivolumab is. I had a targeted therapy drug Dabrafenib and then when a scan picked up an enlargement to my ovary I was moved onto Pembrolizumab which is by a different manufacturer but is considered to be the same as Nivolumab, but they have different cycle lengths. I assume you will have yours every 4 weeks, mine has been every 3 but in January I’m moving to a double dose every 6 weeks.
My melanoma was in many pelvic and abdominal lymph nodes on diagnosis so it seems really good news that your scans were clear, no organ or lymph node involvement. There are a few people in the melanoma group who have had a melanoma removed and then have had lumps come up in the lower levels of skin near to their original site. I asked for a prognosis back in 2015, I was told less than a year statistically but I think that was based on the targeted therapy I was on only working on average 9 months, and bang on 9 months my scan showed that spread. With immunotherapy it must be hard to give a prognosis as it doesn’t work for everyone, but when it does work the remission can be so long that it is considered virtually a cure. It kick starts your immune system to deal with any stray cells that are too microscopic to see on a scan and prevent them from growing and spreading, prior to September 2018 adjuvant treatment wasn’t available for melanoma, people were just on watch and wait, monitored for 5 years to see if things reoccurred. The immunotherapy side effects looked scary as it can make your immune system over react to things. For me every freckle I had disappeared when I had an all over body rash at week 2, and I felt at half speed for about 4 days after every dose, but nothing more than that. I was given tablets for diarrhoea just in case after the first dose.
I hope your treatment goes well, if you have any questions from my experience please ask, and you might want to have a look at the melanoma group it’s more active than this group is.
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Thank you so much for taking the time to reply and share your experiences with me. I am feeling a lot more positive now. When I first started on this journey all I could think of was the "C" word and imminent death. Every minor twinge anywhere on my body I had was, in my mind, another secondary cancer but I'm slowly starting to realise that is not the case and I'm making every effort - not always successfully - to think positively. I'm hoping that either, because I've luckily caught mine so early (its been a whirlwind 7 weeks), my body may well of dealt with the primary or the immunotherapy will take care of any stray cells floating around. Yes, I am having my treatment every 28 days for 12 months and, in a perverse way, I'm looking forward to it because it means I am on the road to recovery. There are a lot of people who are in a worse situation than me who have lived long and rewarding lives and that gives me strength. I am looking to still be active, exercise wise, during my treatment as I love walking, swimming and playing golf which will help with a positive frame of mind but I suppose I will just have to wait and see what reaction my body has to the Nivolumab.
Did you find any side effects you had were immediately after your treatment i.e. the next day, or could occur at any time during your period of treatment ?
Perversely, my wife and I have always joked that, with her being fair skinned and a red head, she had to take extra care with the sun and I, being naturally dark was of little risk. Shows how indiscriminate melanomas are.
I wish you all the best and thank you again for your reply.
Hi Chris (Eintracht), my rash was 2 weeks afterwards. The tiredness was sometimes straight after, or later that day, but sometimes my appointments were in the morning sometimes in the afternoon. Tiredness I put down to a change in blood sugar levels, possible Pembro side effects, the long journey to hospital or not sleeping well the night before treatment or all of the above.
There is a video of a consultant talking at a melanoma patient conference, about side effects, what weeks they often occur in and last until and how they are dealt with. The side effects for all Immunotherapy seems to be the same but ipilumamab has a higher frequency than just Nivolumab. I will put the link below,
Hi Chris (Eintracht), I hope you don’t mind me checking in on you and your wife. I was wondering how your treatment was going and hoping you’ve got some positivity going on.
Hi KT, thanks for your message. I have now had to immunotherapy treatments and am on a 4 week cycle. Ive been very lucky so far and have had no side effects whatsoever and feel completely normal. So fingers crossed it is going well so far, but obviously very early days. Oncologist still cant tell me if Im Stage 1 or 3 but is treating me as stage 3 just to be on the safe side. Ive had to change my golf attire completely as I play 3 times a week and am now not allowed to wear shorts because of the sun. It is absolutely sweltering here in QLD so that takes a bit of getting used to . How are you going ? Well I hope. Thanks again for your msg. Take care. Chris
Hi Chris, glad things are going well for you, even if you are sweltering. Good to see you’re keeping to the shade, hat on and covering up more, here in the U.K. I have my factor 50 for when the UV rays get higher.
I’m well and have changed to 6 weekly immunotherapy with no extra side effects so it’s a win win at the moment, less time at the hospital !
Hi KT, great news that you've switched to a 6 week cycle, must mean they believe things are going really well. I've my next treatment on the 20th, its actually not too bad really - takes about 30 minutes plus 15 minutes flushing then sitting waiting to see the Oncologist so he gets his money!!! In and out with him in 5 minutes. Each treatment I take a different friend along with me, not because I need babysitting but just so they can see what it is all about - and to have some one to talk to, to alleviate the boredom. Physically, like yourself, I feel no different to before this all came along which is great. No side effects at all (so far). Mentally I struggle a bit though. As my situation is such a rare one I have great difficulty with the fact that they cannot give me more concrete or definite answers. They cannot tell me for sure if I'm stage 1 or 3, they cannot tell me for sure if my original lump was in my lymph nodes - doctor and pathologist say "No", Oncologist says "most probably" and they cannot tell me whether my primary was a) my original lump (unlikely but possible), b) the level 1 melanoma they took from my right arm near my original lump (unlikely but possible), c) my body has destroyed the original melanoma or d) its still in there somewhere festering a way.
I'm still playing golf or walking every day and swimming every day too which helps me mentally as well as physically. Everyone keeps saying that as I'm so young and fit and healthy I'll beat this, but my point is if I was so young, fit and healthy why did I get it in the first place ?
Anyway, apologies for the slightly down response just had a couple of bad days mentally, I cant burden you with my issues. Let me know how you are going and I'm thinking of you. I would say "Good luck" but I don't really believe in luck!!
We all get down days once in a while, mine was on Friday when my scan was delayed after 4 failed cannula attempts and then having to have a line put in. Scan eventually done a few hours late and now I’m waiting for next appointment on 26/2.
Yeah, bloody needles. I gave over 40 pints of blood when I lived in the UK, have has regular blood tests over the last 10 years here in Australia - nothing to do with my current situation - and not once was there a problem with finding a vein. My last immunotherapy treatment the nurse took 5 attempts to get my needle in a vein - what a butcher. That doesn't tend to bother me too much as its just a minor issue. My doctor has now referred me to a specialist melanoma clinic in Brisbane for a second opinion in the hope they can give me some more definitive answers to the questions I'm left with no answers to that I've mentioned before. As my oncologist is treating me as stage 3 I'm hoping any answers they may be able to give me cannot be any worse and there is a slight chance they could be better. Anyway, time will tell. My next immune is the 20th and I've got to have a blood test on the 17th at exactly 8AM (God knows why) to test my steroid levels which apparently were down but not a major problem yet. Good luck with your appt on 26th.
I sounds like you will welcome that second opinion, and it hopefully will give you some more clarity.
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