Melanoma with unknown source.

Hi KTatHome

I hope you are still walking but I wouldn’t fancy it today. Too cold for me which makes my husband laugh as I am originally from Canada! I will give you my update so others can read it. I have found it fascinating that most of you know the details / size etc about your cancer. I was just told at my appointment on the 29th Dec it had spread to my underarms, hip, abdomen and mussel in my back. I asked how could this be as originally in August they couldn’t find anything on the pet scan and in Jan it had spread so far after having so many lymph nodes under both arms removed. The answer I got was it must have been very small and not detected on the first scan. So you really can’t tell what is going on can you? I know this Is all new to me and I am having trouble understanding the seriousness of it. I had my MRI and my brain is OK, it has not spread there. What a worry that was waiting for that result. I got the MRI appointment the next day as there was a cancellation. I wanted to phone and ask if I could have the result but was to afraid to so waited the two weeks for the next appointment.  I was also told I don’t have the BRAF gene. Anyway the letter I received from the doctor when I got home from the appointment on the 12th. It just said the PET scan showed melanoma to be more wide spread than they had anticipated.
The letter explained the two treatments saying the ipilimumab and NIvolumab would be expected to to control melanoma in a majority of patients with around 2/3 of them being alive and well after 2 years. The risks of side effects was sufficiently severe that 1/2 needed to be admitted into hospital. The second treatment they suggested which is the one that they suggested before they knew it had spread was Pembrolizumab and this was also be expected to control melanoma in the majority of patients with just over half being alive and well at 2 years. The side effects were much lower with only 1/5 having side effects that were severe enough to end up in hospital. 
I was told to go home and given a couple of printouts about the different drugs  and come back on the 12th with my decision. He would not help me decide me or advise me either way. So my husband and I discussed it and thought the double treatment would be better and more effective so thought we would go with that. When we told the doc he said why and explained more or less what was in the letter which I had not received yet and said as I was a wimp I would be better off having the pembro. Why didn’t he tell me that 2 weeks ago? Has anyone else had to made that decision and how did it turn out for them?
I have just had my Covid test and start treatment on Tuesday. They did say if the pembro doesn’t work they would add something else. I am trying to live in my own little world and be positive so I am convinced it will all be clear at the next PET scan and I wouldn’t have any side effects.
A hopeful DaisyRed

Hi DaisyRed glad you are feeling hopeful, or is it that you are wanting to feel hopeful, I hope the first one and that you’re ready for your first treatment. Entertainment sorted for the hour or so you will be in there, husband sorted for what he’s going to do while waiting for you and snacks sorted, and water to be hydrated for when they put the cannula in. Clothes that are suitable to have a cannula put in your arm. I went for 3/4 length sleeves, they can put the cannula in your hand but it’s more painful going in there as less flesh and fat, much prefer it put in my arm. I am glad you updated us all on how you are getting along.

The plus point of starting Pembro is that it will be less hospital trips than doing Ipi, and as you say they can add it in later if they need to. In these covid times it can be good having less trips. Where as adjuvant treatment is 1 year, the treatment when you have melanoma showing on a scan at the start is 2 years. I stopped after 1 yr as I had been clear for 6 months, as it was mentioned that I could, I think a trial is still going on about stopping after 1 or 2 years in some places when clear. I’m wishing you all the best for your time on Pembro.

 It was cold today, but we still went for a walk, we left it til the afternoon which was 2* higher at a cold 4*. We did 5.6k today but I was getting a bit tired at the end and there was ice on some of the puddles in the shady bits. A plus was that there were less people and dogs out walking on this country route than normal. I seem to have got used to the big size of the  Encorafanib tablets and can take them a lot quicker than I could when I first started. I should have a scan in about a months time and by then my T cells should be ready and will be frozen if I don’t need them yet. I was occasionally getting cramps  in my hands and I’ve been taking magnesium tablets to help with that. So everything is ticking along for me until that first scan and results. 

Hi DaiseyRed, I am in admiration of you being so positive. Your comment  "... I am convinced it will all be clear at the next PET scan  ..." was wonderful to read. The mentality to be positive is a problem I suffer from severely. I am waiting on a 3rd CT scan in 4 weeks (tomorrow) and the results Thursday. My "lung lesion" seems a bit of a mystery in that they cannot tell me with confidence one way or the other if it is a spread of my melanoma. Apparently it is too small (8mm on last CT scan) for the PET scan to glow - so there is still a glimmer of hope it is something harmless but only a glimmer !! Good luck and I hope it all goes well.

Chris

Good luck for Thursday Chris.

Thanks KT, Im hoping its a scar from that bout of pneumonia Ive never had  If its only the one lesion they should be able to deal with it hopefully Take care, hope youre going well. Chris

Hi KT

Thank you for replying so quickly and your helpful advice. I didn’t think about snacks and a drink for the treatment. I have a couple of programs downloaded on my phone so I will have entertainment. I am watching so much TV at the moment. I do wake up in the middle of the night and think to myself I Have Cancer! So hard to get my head round. We normally go away for three months in the winter so we don’t really have a winter social life here. My husband plays golf which does give him a break. I hate going out in the cold. I tend to hibernate! I have been going out for lunch more often because everyone says I should build myself up and put on some weight. It is strange just eating what I want and not keeping an eye on the scales. With my Xmas weight I have gained 5 pounds! It sounds like pembro has been a good drug for you. How wonderful when you thought you were clear even for a few months.  It must have been devastating when it came back. When the doc told me my brain was clear I cried. It looks like you are never really clear of it. I am worried about being in pain. 

I would like to ask you what side effects you had and how it affected you. I know everyone is different but my doc said he would give me sickness pills which he said very unlikely I would need and Imodium and steroids only to be taken if the Imodium didn’t work and I was instructed to do so. He said I may get a skin rash but said I may not get any side effects. He did play them down but when he asked me to sign the consent form there was a great list of them including hair loss and blood clots. I know these are all unlikely and when you go for an operation they give you a long list so I have ignored them. 

I was told that I would only have to go to hospital for the first two prembo treatments then someone would come to give it to me at home. How good is that! I will have to ask more questions as I don’t understand about it spreading. He said it had spread to both of my underarms and I have one pea size lump under the arm that was clear after the op. He said well you know what that is, which would be a lymph node. When he said it has spread to my hip, a mussel in my back does he mean it is in lymph nodes in that area? He said it was in my abdomen although not sure quite where but behind my spleen.  
He did mention that if a trial came up he would look into it but is was a passing comment so I will have to ask him about that later. 
again thank you for sharing your positive results of prembro.

DaisyRed

Hi Chris

Good luck with your scan tomorrow. looking at your profile it looks positive. Which immunotherapy drug were you on? KTatHome was on prembo which I am going to have. You were so lucky not having any side effects. It is easier to cope with if you feel fine. You can forget for short periods of time that you have it. Going for results is so stressful. When I went last week I asked if they could give me something to take to calm me down while waiting but they said no. When they told me the mri on my head was clear I cried. I was expecting a death sentence. I normally worry about everything but I have just had to tell myself I feel fine so I must be ok. Perhaps it is because I didn’t know enough about it all but I am learning slowly.
This should make you laugh. When I was first diagnosed and had the op to cut out my lymph nodes and the pet scan came back clear I told every one I only had two cancerous lymph nodes out of about 40 that had been cut out and as they couldn’t find anything on the pet scan I must cured. I was saying I didn’t have real cancer as if they can’t find it I must be clear.  Of course things have changed now! I was happy in my ignorance. At least we are being monitored and anything new will be found quickly. 
Take care

DaisyRed

Hi DaisyRed that’s very good that you can treat you at home. I can’t even get a blood test at home, I travel 40 mins to a park and ride the opposite side of the city from my hospital to get my blood tested in a drive through marquee. I do get my tablets couriered to me though. 

Re the spreads I agree that drs don’t always make it clear if it’s in lymph nodes in the area or in or on something else. What really matters though is how well we feel and if it’s shrunk or gone on the next scan. 

You asked about side effects, I had an all over body rash 2 weeks in from my first iv, I rang the help line as instructed and was advised to take antihistamines like you do for hayfever, and use E45 or similar moisturising cream. It delayed my next iv by a week waiting for things to clear up sufficiently. I always got tired after my iv and for the next 4 days felt at half speed. I once went for a walk and tiredness suddenly hit me like a wave, I worried that I wouldn’t be able to walk all the way back to the car, I had to rest on a bench. After that we planned circular walks for those days as I didn’t want it to happen again a long way from the car or home. I have only had diarrhoea twice so difficult to judge if that was a side effect. I have had steroids but that was prior to any treatment as I was not feeling well and loosing weight I had to slowly decrease them to start treatment. 

I tend to concentrate on eating healthily and exercising as I wanted to help my immune system fight this.

Hi KT

Thank you so much for the info. Very helpful. A friend of mind has just phoned and told me there is an article in the Daily Mail today about Pembro and say how new and good it is. They also say it is now funded on the NHS.

keep safe.

DaisyRed

Hi Daisy,

     I didnt laugh at your thoughts of being cancer free once your lymph nodes were removed and your scan was clear - that is the way to think and that is what my Oncologist told me to think, and until my recent scan that is what I was thinking. You were, until they told you different, cancer free. I just wouldn't use the "cured" word. Once diagnosed we all go through this 5 year cycle of scans, blood tests, skin checks etc. that is so if it should return they can catch it early and hopefully treat it successfully. I'm telling myself that my lesion in my lung has been caught so early that it isnt even big enough to clearly diagnose it 100% as metastasis cancer. I have to be realistic and assume that it is highly likely it is but at the moment there is only one and it can be zapped with radiation or removed with surgery. My imuuno drug was Nivolumab(Opdivo), I'm not sure how they decide which immuno drug to give, it seems different for all. I do know that if it returns they seem to double drug dose you. I'll find out Thursday which route I'm on. I'm assuming double drug dose for 2 years and either targeted radiation or surgery to remove my lesion. Best, but highly unlikely, out come is that the lesion is not cancerous but the result of a non existent bout of flu, pneumonia, covid - none of which I've had but until I'm told different I live in hope. I've read several cases similar to yours who have become disease free - there is one on this forum - so dont give up hope. Keep going girls, you're an inspiration. Take care. Chris