Hi, I'm new and worried

Hi Latchbrook, 

Thank you for your message. It's the most reassuring thing I have read so far. I suppose as well I am struggling as since my partners diagnosis at the beginning of November, we have not seen any specialists in person to speak to. I am hoping his treatment will start soon too. I think it is looking to be immunotherapy. He is also BRAF positive, but I heard that they might not start him on this to begin with as an adjuvant treatment. I am not sure why really. I just want the best thing for my partners survival. Thank you so much for your time, help and support with this. It is really appreciated. x

Hi Worried Partner,

I'm pleased that you've got your partner's results through even if they are not what you wanted to hear.  Like you for your partner I do worry about how much time I have left. I've read the statistics and just hope I'm in the 60% surviving more than 5 years.  I don't have the additional option of targeted treatment as I'm BRAF negative.. but I do  know that the treatment nowadays is amazing compared to 10 years ago so I feel there's every chance us people with stage 3 and above can live for much longer. The docs don't have all the long term stats as these new meds haven't been used for long enough yet!

Apart from meeting the dermatology consultant initially and on my mole diagnosis I didn't see the oncology consultant until much later on (August/September).  My cancer surgeon gave me the results of my surgery after the WLE and SLNB.  As for which treatment I don't believe there's any indications as to which is better to start with and being braf positive at least there are more choices.  Hope treatment starts soon. I'm on Pembro which is only a three hr visit to my local chemo unit and a fairly painless proceedure every 3 weeks for a year.  Take care, it is a strange learning experience we're going through. X

Hi Alottment lover,

Thank you so much for taking the time to message. I am really sorry to hear about your diagnosis and like you say, I hope that with the new treatments I hope there is hope. I have not heard much about Pembro as a treatment - is it immunotherapy, and do they think it is working? Dis you also have to choose which treatment you wanted to try, or did the oncology team more or less suggest the best one, as I think making a choice when we don't know how to choose would be so difficult.

Do you also have PET-CT type scans often to make sure you have no new tumours?

I hope the treatment works for you and feel free to message any time you want someone to talk to. 

Best wishes x

Hi Worried partner, I hope you don’t mind me replying in here. Pembrolizumab is an immunotherapy treatment, Allotment lover I believe is on this as an adjuvant treatment, a one year treatment to help prevent a recurrence. The same drug is used when not all the melanoma can be removed. I had an unknown primary but discovered in multiple lymph nodes back in July 2015, as it was in multiple nodes some distance apart surgery wasn’t possible. I’m BRAF positive like your partner and I was started on targeted therapy Dabrafenib, as it can work very quick and I wasn’t feeling well at that stage it was only effective for 9 months for me so I then moved onto immunotherapy Pembrolizumab in April 2016 which wasn’t actually available in 2015. 

I know you said your partners melanoma was in his neck, I’m not sure if he’s had surgery to remove it or if it’s still there like mine was. I’ve put a few links below that might help from the melanoma focus decision making aid. 

The first one says stage 3 and hopefully leads you to adjuvant treatment and the options available and when in there you can click on the names of the drugs to find out a bit more about them.

https://pda.melanomafocus.com/stage-three/

If his treatment is because the melanoma has not all been removed the best link I can give you is stage 4,to show the options which are very similar.

https://pda.melanomafocus.com/stage-four/

The link for Macmillan information on targeted and immunotherapy is below as well for good measure I hope I’m not overloading you.

https://www.macmillan.org.uk/cancer-information-and-support/melanoma/treatment-overview-for-melanoma

I am currently having Encorafanib and Binimetinib the newer targeted therapy drug after moving from several years of Pembrolizumab with a few gaps. Im hoping your partner will be lucky and become clear and stay clear but unfortunately that doesn’t happen for everyone.

I hope the links help, I find those pages contain a lot of useful information and we can give you are real life experience of these drugs but everyone is different in reactions.

Ive had CT scans with contrast every 3 months since my diagnosis in 2015 sometimes stretched a bit because of covid delays to 5 months, and sometimes brought forward if I’ve alerted them to something. 3 monthly has continued for me as I have not reached 2 years being clear. At one time they did head scans alternatively when things were going well, in blips they have often carried on with them 3 monthly. I think sometimes it depends on the consultant as there are 4 melanoma consultants at my hospital as well as the teams under them. Back in 2015 there were only 2, so I take that as a good sign that people are living longer, and being monitored. 

Hi KTatHome, 

Firstly thank you so much for your detailed reply - it is really helpful and I appreciate it. 

Secondly, I am sorry to hear that you have been going through this since 2015. But I am also pleased that you are still here and that treatment must be working for you in some ways. 

Thank you for the links you have provided. I will have a look at those, especially with the information about treatment options. 

My partner has cancer in his parotid (I think his salivary gland) and his lymph node in the same place in his neck. The tumour was visibly quite large though we haven't heard how large it was, but know it is stage 3b and he is 38 years old. 

I hope you don't mind me asking but was it yourself or CT scans that have noticed that you were not all clear? I suppose I want to know the best way to detect if my partner's cancer spreads somewhere else to get it picked up as soon as possible in the hope that something can be done. 

Also, are treatments changed because they become resistant and no longer work? 

I hope you also don't mind me asking, but did you have cancer recurring in the same place, or somewhere distant? I know that stage 3b has a high risk of spreading, and returning after surgery, so this makes me very afraid. 

When my partner had a PET-CT scan at the beginning of November, they found the cancer only to be in his parotid and lymph node in his neck. However, the tumour grew in size rapidly over time before it was removed by surgery at the end of December. What I am concerned about mostly is that in the time that the PETC-CT scan was done (3 months ago now) that small bits of cancer have circulated and settled in many other places and are now growing into tumours. I don't undertand when we will next get a scan to check for this, or if we will know if the adjuvant treatment is working once it has started. 

Thank you in advance if you have any information that would be of help for me, or equally if anyone else is also reading this and has their own similar experiences, I would really appreciate your help so much. 

Best wishes x

Hi Worried partner, 

How did I notice I wasn’t still clear? Did it recur in the same place or distantly? 

Short reply both me and scans, and sort of, the longer reply is below.

A CT scan with contrast picked up an enlarged node at 12mm, I’d been clear for 18 months and a bit in disbelief of not staying clear as I was well and couldn’t feel any thing. A needle biopsy confirmed melanoma so I returned to treatment. As my cancer was in many pelvis and abdominal nodes I am assuming it was in one that had been affected more than 2 years previously. My original diagnosis was from visibly enlarged nodes higher up but on both sides of my navel, and my biopsy for diagnosis was done on a different enlarged lymph node accessible through my back.

That one node did not reduce to be classed clear so they removed it by surgery and while on adjuvant treatment a different  node in the groin but not connected to that first groin chain of nodes popped up again found by CT. In the groin a lot of nodes are deep in the body and can not be felt on the surface when they enlarge. I had several scans when one popped up, reduced in the next one but a different one popped up. I am told that’s unusual though and why they have held of taking action immediately with me as one time they flagged me for surgery but in the short week or so between a growth and referral for surgery it reduced again.

During a break of treatment in covid while I was not clear but considered stable I alerted them to an enlarged node I could physically see and feel and so treatment started again. My biggest cluster of nodes that have enlarged is near my stomach at the moment so when I was feeling sick it was attributed to them enlarging. I’ve not had anything in my neck so have no experience of that but my head is scanned as well as my chest abdominal and groin to check for spreads.

You can ask them to show you how to check for nodes if they don’t do it automatically, but they should do regular scans that will pick things up. They have protocols about how often they should be done and if treatment is changed they do a scan so they can measure a starting point and if treatment is working. 

Hi KT, 

Thank you so much for your detailed reply and in taking the time to answer my questions. Your experience and knowing what to expect is very helpful to me. 

When the cancer returned in the same lymph nodes as before, was this because the first time you were diagnosed these weren't removed? I was similarly confused regarding my partners cancer, as I have read that they usually remove a group of lymph nodes, rather than just the one as they did in his case. So in my mind I am thinking it will inevitably reappear in the other lymph nodes in his neck, if not on other more distant places as well. So I am still confused about this and why all the nodes were not removed. 

Is it possible to remove your groups of nodes that have been affected with surgery? And if not, is the treatment you are receiving reducing the tumours that reappear or develop? 

I know that my partner will be having adjuvant immunotherapy for his stage 3b cancer, but am unsure if we will know it is working and indeed whether it will work or not. I am guessing that scans will help show whether it is working. Did you also find that cancer grew again after treatment stopped? I am wondering why the immunotherapy my partner is due to have is intended to be for a year, as I am concerned that the cancer will just grow again then once treatment stops, if not before. 

Thank you for explaining about the scans. We have no clue you see how to check nodes (hopefully they will explain), and this is all really useful as so far we haven't seen anyone, and I have no idea what to expect in the months ahead.

I hope that your treatment continues to work for you but I hope you don't get any new growths or spreads.  

Best wishes. x

Sorry for late reply I had two hospital appointments this afternoon. 

As an unknown primary with extensive spread to many lymph nodes it was not possible to remove all and pointless remove just a few when it was already in so many. Systemic treatments like immunotherapy and targeted therapy treat the whole body so when it works it can reduce or eradicate any melanoma cells that are found. My first spread was when targeted therapy Dabrafenib stopped working, the average time for it to stop working was 9 months mine stopped at 8. These days people don’t get the single targeted therapy they get two drugs which have a longer average time for working and sometimes thats for many years it varies from person to person. 

When I changed to immunotherapy I became clear and the plan was at one time be on treatment for life or until it stopped working. After 6 months I was clear, I continued on treatment for a further 12 months and I was given the option to have a break at a year. I really needed a break after 21 months of treatment I thought the break would be miss one treatment and start again, then it was explained carry on every three weeks with treatment or come off it until it’s found it has returned. I chose to have the break weighing up the usual 2 years on treatment before a break is usually mentioned and new thoughts that 2 years may be too long and needlessly risk long term side effects. I chose a break at one year as I’d been clear 18 months, with the assurance I could resume Pembro if a new growth was seen, and stats said once clear the % was in favour of remaining clear for years. Unlucky for me it came back after 12 months but only in one node and I had a great 12 months off monitored every 3 months and able to get fitter than I had been for years after having had fatigue after every dose.

In hindsight would I chose to do the 2 years ? My consultants first words when I went to see her was that it could have returned even while on treatment so I remind myself that the decision was right for me at the time that I made it. There is a trial for people to come off it, if clear for over 6 months at the 12 month stage, so they have to make that decision, and others have to decide at the 2 year stage if they want to come off. At one time an added complication was that NICE would not allow people to resume treatment even if it was needed if they came off, the result was no one came off as the consultants could not recommend that they should, and perhaps thousands of pounds of NHS money was being used to treat people who no longer need treatment. NICE altered the guidelines to make it ok to come off and resume when required. 

Melanoma is sometimes likened to a patch of grass and a dandelion seed starting to root. If not treated it could be everywhere, caught early and it won’t return. With an unknown primary it’s a bit more complicated our own immune system has probably kept things at bay by it’s for some time perhaps, but has hit a patch when our bodies need some more help, it’s growing faster than our own immune system can cope. Melanoma is tricky and after a while can hide from the treatment we are given. You hear something similar in the news with covid mutating into a different strain trying to stay alive. 

Read the links I gave you and it will explain lymph node dissection has gone out of fashion for melanoma as the stats said it didn’t help people live longer it still found a way round, but until a few years ago there was no adjuvant treatment it was just watch and wait so more dissections were done as the only method available to help prevent a spread. Two years ago or possibly 3 adjuvant treatment for one year was authorised, some people still chose watch and wait, others chose immunotherapy or targeted therapy based on what was best for their life style or what was recommended. For adjuvant treatment you may think why not longer but there is no choice it’s a year or nothing but if it returns treatment starts again. For some they will have had a year of treatment that wasn’t required others they may have a year and it will still come back, either while on treatment or after treatment has finished. You learn to live with uncertainty and enjoy the time between scans but get a little nervous as they approach. 

I had one lymph node removed as it had stubbornly not gone after a year of me returning onto Pembro, otherwise I was clear. A dissection of a string of nodes was discussed by surgeons, they wanted the node for research into resistance. My preference was take one only as a whole string was a bigger op for me, longer recovery and risk of lymphadenopathy swelling affecting my walking. I had listened to patient conferences when dissection was discussed, and felt with my history of it being not just in my right groin that the risks were greater than the benefits. It might be very sensible for someone else, I needed my team to show how it was more sensible for me and I would do what was best. My consultants surgery and oncology and nurses discussed my case at a Multidisciplinary Team meeting it was arranged to remove one node by laparoscopic surgery for research purposes and then when clear go back onto Pembro for a year. 

Nothing has been straightforward after that, you have read my profile ? 

Melanoma has grown while on a planned break to avoid hospital during covid while there was no cure, I didn’t take the whole break as I could feel a lump growing and space was found for me to restart treatment. Would it have grown if I hadn’t taken a break we will never know but a year later it has grown while still on treatment. Recentl I could have been moved quicker onto other treatment and perhaps I would have less cancer in my nodes but it’s been a calculated risk to have an extra option of a clinical trial, I’m still alive still well and have less cancer now than when I was first diagnosed, but more than at my best times. Again the message is live with uncertainty and hope for the best to happen again. I’m yet to have a CT scan (it’s due in Feb) to prove my new tablets are working but my blood tests indicate they are and I’m feeling good, except for a fluid build up where surgery was that is being looked at next week on an ultrasound. 

I know the period waiting for things to happen can seem very scary and I’m not clear how long you’ve been waiting, to know if you should be chasing up some action. I know in my first limbo I still had access to a cancer specialist nurse who I knew was putting things in motion and I could contact with worries and questions. I still have a specialist nurse who can be contacted if things happen between appointments and can liaise between different departments for me. 

I’m not sure I’ve answered all your questions and I’m in danger of rambling now so I’ll say goodnight for now.

Hi Worried partner, obviously KTatHome has filled you in on Pembro very thoroughly so I'll leave that alone.   My initial scans showed no other suspicious areas so cancer was in the mole and in two of the three lymph nodes removed from under my arm therefore the single drug Pembro was offered. As I'm braf-  I have no targeted therapy to chose.

I have a CT scan (neck to knee to cover all lymph glands and organs) and also an MRI scan of my brain (melanoma often travels to the brain plus I have an upper body primary mole).

My consultant says that most people stay clear whilst on Pembro/immunotherapy. After the year is up I will continue to have both scans every three months.  Immunotherapy is now being used for a variety of different cancers and can be seen to be very effective.  

Some people on here like KTatHome have experienced a lot of treatment over many years and have responded well to even late stage diagnosis.

I like the dandelion analagy KTatHome.  After my initial shock at diagnosis and surgery I settled into the 3 weekly routine I have and just carry on. I do cry and get upset occasionally but I cannot affect what will happen with my cancer. I know some people say we can but this is my journey and therefore my fight.  I have hope and have crossed fingers all the time but silently.

It is so scary to begin with when all is unknown and will get easier to carry on each day eventually.   I can't live each day as my last and I wouldn't think about "my last Christmas" or "my last birthday" as I knew I could not enjoy them so I just plod on with my alottment, my volunteering and gardening and scootering!

Take care xx

Hi KT, 

Thank you so much for replying and so late in the evening too! - I read your message last night before bed, and I really appreciate the time you have made in helping me with all the questions I have. I hope so many more like you are kind enough to share their experiences, as it is so hard to know what to expect, so thank you. I hope your hospital appointments went well yesterday as well. 

Thank you for sharing your story and about the treatments. I have read your story and it all sounds like such a long and complicated journey. It is good to know that your treatment worked for a while, but scary that it came back, and so soon. And it is scary that the melanoma can become resistant to the treatments.

I suppose I have read so many stories and it sounds like as soon as it is in your lymph nodes, it will always continue to come back. I guess it is only just a matter of time. We haven't seen a nurse or specialist about anything, not even when my partner was first diagnosed, so I have so many questions and am terrified about the whole thing. But we will be seeing a specialist before immunotherapy starts. 

The thing I find confusing is that on his initial letter, it said that the intention of the surgery was 'curative' but of course after doing much reading, it doesn't seem that that is a possibility with the nature of melanoma, especially with it being a stage 3b. From what I understand there is no cure, and it is a case of just waiting to see how long you can last on treatment breaks before starting treatment again, is that correct as far as you know? Also, if that is so, why do they not just put people on continuous treatment? Is it because of the resistance that melanoma gets to the treatment, and also the damaging side effects the treatment has on the body? It just seems so scary to wait in between growths before starting the treatment again. 

I think my partner thinks that now the tumour and the one affected lymph node has been removed, that thats it. But actually in reality I wonder whether more tumours are already sprouting up around his body with no way of knowing until the next scan. I honestly don't know how you and others cope - you are so wonderfully brave and coping so well with it all, and to help others out on here all the while is amazing. 

I hope you get good results on your CT in February and I hope the tablets are working for you. 

Thank you so much again, and I can't thank you enough for your time and support in helping me with these many thoughts and questions I have on melanoma. I really appreciate it. 

Best wishes x