It’s back…

Hi Tinktoo, rant all you like its what this site is for, get it out of your system and then start working out exactly what you need to ask your oncologist at your next appointment. Its hard to remain positive for our family and friends and if like me you just want to scream sometimes,then let it out.  Hopefully you have a good oncologist who will explain it all to you and give you a proper diagnosis and treatment plan.  I find that its best to write it all down and ask exactly what you want to know, my oncologist is very forthright and tells you as it is but not everybody wants to know. I found it helpfull on here to read others stories and find out as much as i could about my cancer.and what treament was best for me so i went to my oncologist well armed with information and a list of questions. I am a firm believer we have to do as much as we can to get the right help by asking as many people as we can to help us make the right decision. I asked doctors, surgeons, oncology, nurses,and anybody who would listen to me, its a fight we must take on and if it does not sound right to you ask for a second opion, never be shy to ask for another oncologist if you are not happy with any treatment plan. I hope it helps i have been fighting this disease for 18 years and i am still here, i am not giving up till the fat lady sings. I wish you all the best, keep fighting x

Hi Tinktoo, I think the idea is that we will feel more in control if it’s our decision. I also hear you that they are the drs, the trouble is sometimes they are giving the options of what’s available, but you know better than them what fits in with your life better. I also feel it’s good to rant sometimes to get the emotions out so that questions then flow easier. 

My question to them in these circumstances is what do you recommend and why, and hope they give an answer. 

I was wondering when your last scan was and how long they are thinking of waiting for the next one. The thought of something possibly growing during a wait is enough for some to want to start treatment straight away. 

When adjuvant (preventative) treatment is often the same as treatment when things aren’t clear except for the length of time what if any issue is there of starting treatment sooner. 

Have they given you a choice of treatment ? Is it Dab tram again which is a targeted therapy, ot are they now recommending immunotherapy Pembrolizumab or Nivolumab to try something different for you. If it is something different is that considered better, or the same ? does it use up that treatment option earlier. 

I had Dabrafenib in 2015 then went onto Pembro, but when it stopped working rather than a preventative year. I’m now back on similar tablets encorafenib and binimetinib as Pembro stopped working for me. 

0.7 is quite small but there’s also the thought that treatment is better the earlier it’s caught. I had a weird history of my lymph nodes enlarging but  reducing again at the next scan but a different one popping up, but I’m told that’s unusual. I think that’s why sometimes when they propose an action I want to know why, it has left me in limbo sometimes though when they haven’t wanted to take action to soon, or to late. I have a really good specialist nurse who can often go through with me what their thoughts were inbetween appointments. 

I hope you are not left in limbo to long and you feel confident in what ever actions you jointly decide on.

Hi wino

thank you for your message…have just read your bio and wow…you’ve certainly had to climb some mountains. You are of course right, knowledge is power and I’m determined to keep on fighting.x

Thanks KT for your message.

I had the scan early Jan which showed the lung nodule but they said that they would scan me again end of March to see whether it had grown/remained the same or optimistically, disappeared. But, due to the mole returning as a melanoma, they are now thinking of starting me on something sooner.

im not sure, but I think they were discussing iv this time. I’m not sure whether to wait for the scan in March to see what’s happened with the nodule (I know I am secretly hoping it has gone) but then would I still need to be taking something anyway due to the mole being melanoma? It was on my left rib and my original melanoma mole was my lower right back so it’s travelled a fair way through my body….

Hi Tinktoo, I feel for you, your in that limbo indecision rut I think, you want to move forward but you can’t do that today and even if you could you wouldn’t know what to move forward with , have I summed up your feeling right or got it all wrong ?

I suppose the things you can control are preparing what questions to ask, and finding what things will make the time go quicker for you, getting a second opinion if you want one, or asking your nurse to run over again your options prior to the drs appointment. 

I was due a scan mid Feb and it’s slipped back to early March presumably due to back logs so I think I’d ask how much of a delay there would be to treatment starting if you waited for another scan. It’s not just the scan it’s self but results time. They won’t want you to start on a treatment that you are not mentally prepared for, but won’t want to risk the possibility of things progressing during a delay. I assume they haven’t got a crystal ball to know but do have perhaps an indication of things in your blood tests and you know how well you are feeling. 

I hope what I’ve said has helped and not muddied your thinking. Perhaps a rant was all you needed, before regrouping your mind for your next appointment. 

Thanks for your helpful message.

I went to see my oncologist on Friday and asked all that I thought would be useful. She said that they probably wouldn’t think of putting me on immunotherapy if it was just the mole removed that had melanoma, it’s because of the lung nodule that they think I should. 

I would be started on ipi and nivo via iv for 3 months and then nivo on its own. There is currently a 3 week wait for this treatment.

I decided that as I have another PET scan booked for 3 weeks anyway, I would wait to see if the lung nodule still shows in that scan. I’ve already been signed up for the treatment  so there would be no further delay if it does still show to be there. Obviously I’m hoping that it’s gone!

the side effects sounded terrible, but then don’t they always! But then she said that often, people find them easier than those experienced with the dab tram combination….don’t know if anyone knows about that?

thanks for listening….or reading rather…

Hi Tink,

      I am in exactly the same boat as you only slightly further down the road. I had a small lump removed from under my arm in late 2019 which turned out to be a melanoma of unknown primary. I then had 12 months of Nivolumab and during that time and for the next 12 months as well all my 3/6 monthly scans were clear. Then in December 2021 my regular scan showed a lesion on my right lung measuring 7mm. A further scan showed it had grown to 9mm and a lung biopsy confirmed it was melanoma returning - devastating. Anyway, my oncologist now has me on 4 lots of double dose immunotherapy (ipilimumab and nivolumab) 3 weeks apart and then 2 years of just nivolumab on a 4 weekly basis. Okay, I had my second double dose last week. Side effects - I had several skin rashes and general itchiness all over my body but nothing else. These are manageable with moisturizers, anti histamines, cortisone creams and cold showers. A bit of a pain but definitely manageable. No constipation, no diahorea - nothing else. The documentation they gave me was very informative giving you the chances of getting this side effect or that side effect etc. and how to cope with them, they have to tell you about ALL possible side effects to cover their backsides. I had absolutely no hesitation taking the treatment they offered me as my thought process was if I get side effects but it gets rid of my lesions and I'm back in remission then that any discomfort is well worth it. In the oncology unit where I go (Bundaberg Friendlies) they have treated many people like this and not one, according to the nurses, has been hospitalized or had their treatment stopped due to severe side effects. They might postpone one double dose for a week or so but in the big scheme of things is that fatal - no. Good luck. Chris

Thank you for responding…obviously I’m sorry that anyone is having to go through this but it’s always reassuring to read of someone else travelling your path. 

im particularly glad to read that your side effects are not too bad. It’s difficult enough going through this, and I know we are fortunate to have so many amazing treatment ps available but it’s better mentally if we can go about our lives as much as normal too. 

thank you Chris - I hope all goes well for you

fiona