Metastatic melanoma

Hi Kazzie 

I can appreciate how stressful this all is. The waiting is awful. 

Like you I had a complete lymph node dissection from my armpit. I originally had a small melanoma removed from my arm in 2016. I wasn't offered a SLNB (sentinel lymph node biopsy) In 2024 I found a lump in my right armpit. The GP initially dismissed it as a cyst. Eventually I was diagnosed as stage 3b melanoma. About 10 weeks after the surgery I was put on adjuvant targeted therapy drugs, Dabrafenib and Trametinib. I completed a year of this treatment. I had a few side effects but I am recovered now and being monitored with scans and skin checks. 

I would take comfort that your CT scan showed no further spread. I imagine you'll hear from a cancer specialist soon regarding the next steps. I guess it'll be immunotherapy or if like me, you have the Braf gene then Dabrafenib and Trametinib. 

I can relate to the sleepless nights and anxiety. I wasn't given a cancer nurse so had no point of contact (sounds similar to you!) 

I hope you are recovering from the infection. If you have any questions, please feel free to ask. 

Best wishes 

Elaine (53) 

Hi Elaine 

Thank you so much for your message and i hope you are well now? 

I think what i stress about most is not knowing what they are going to do as not even mentioned anything to me just we are going to take all lymph nodes see you in 6 wks to discuss if need further treatment.

The therapy drugs you mention is this just tablet form and immunotherapy had been mentioned but so many other things to..

Did you feel like you had no support like me i just feel lost with it all if im honest as don't know anyone that has had this i have a couple of friends that have had breast cancer but its so different.

At the moment my breast feels heavy and underarm so tight and sore struggling with the exercises I have physio on the 2nd of September so hope she can help with that.

I'm sorry you have had to go through this but receiving your message don't feel so alone now thank you x

Hi Kazzie, I'm sorry for the slow reply, I wasn't feeling well over the weekend (unrelated to my treatment) but better now. 

Like you, I felt quite unsupported by the various departments involved. It took 6 months from finding the lump to getting the surgery. I have written up some of my experience on my main page. I'll need to update it! Once oncology got involved it was a different story though. They were all super and supportive (The Beatson Glasgow). 

Yes, the treatment I was on was tablets twice a day for a year. This is because when they tested my cancer it had the Braf gene. If it didn't have this gene it would have been immunotherapy.

I guess the lymph nodes they removed from you will be getting tested. I am sure you'll hear from oncology soon. I believe everyone has to wait up to 12 weeks or so before treatment starts to give time for the wounds to heal. 

I remember feeling tight and weird around the breast and armpit. Keep persevering with the exercises - they do work. I have full movement in my arm. I do have nerve damage and some lymphoedema but it's not too bad. 

I feel for you in this period of waiting and uncertainty. It's horrible having no control of what's happening and when. Its a scary time. At least the CT scan didn't show anything up so that's positive. My next CT scan is October and hopefully that shows nothing too. 

Since going through all this I've been reading up on melanoma and there are so many new and effective treatments out there so there 's lots to be positive about. 

I hope you are managing to relax and sleep a bit better (easier said than done!) 

If you have any questions or just want a moan please get in touch 

Elaine xx

Hi Elaine 

Hope your feeling alot better now lovely to hear back from you.

I must admit from finding the lump it was very quick with appointments for scans etc the worse for me was after having the biopsies 3 wks felt like 3 months im just glad they gave me another ultrasound or things could of been. So different..

I'm just waiting now till the 1st when I go back to see the surgeon it would have been 6 wks then from the op.

I do my exercises everyday and from when I started I can see the difference but with how tight it feels im scared to push to hard. But nice to know you now have full movement of your arm hoping i will too in time .

I'm still waking up at night with the anxiety thinking its spread everywhere hate the fear and hate feeling so low in myself. Often cry when on my own as dont want to worry my partner.

I do hope if I do have to have further treatment its just tablets just want to get back to my life, im a carer and unfortunately its a zero contract hrs so need to be working.

We had booked a holiday before I was diagnosed and hopefully will still be able to go its the 14th Sept really need the break but then there is the worry of the sun lol im a total worrier as you can guess.

It's been so nice to talk to you though and you have helped me a great deal so thank you so much xxxx

Lol! I can relate - I'm a total worrier too! 

I'd definitely go on the holiday if you can. I reckon that'll be before any treatment is due to start. Just slap on the factor 50 etc!  It'll do you both good. I bet your partner has also been stressing out but putting on a brave face too! Yeah, I kept a lot of my worries to myself, well as much as I could. It is hard for loved ones. 

That's terrible it's a zero hours contract, especially for a job as essential as a carer!

I know of folk who had immunotherapy and had zero side effects and the same with the targeted therapy drugs so hopefully you'll not need to take time off. 

I'm glad to have helped a little. Keep in touch.

Take care xx

I'm so glad im not on my own. Lol

Yeah I've brought bottles of factor 50 lol when I was younger I used to love to lye in the sun but as I've got older can't do it as last few times I've burnt and not even lay in it crazy..

Just want to go to relax do you think I'd be ok to go in the pool?

I have started writing down questions to ask the surgeon as im always the one get home and think I should of asked this lol

And yes zero contract really should be banned I only got in this line of work as the place I worked for 22 yrs folded early last yr...hopefully I'll be back to work soon and as you say might not need to have time off fingers crossed.

Take care Elaine will keep in touch xx

Hi Kazzie, 

How are you doing? How did you get on today? I believe you had another appointment. 

I hope the wound is healing properly now. 

I had a blood test today but it's just to ensure my kidneys are fine before my next CT scan next month. I think it's because we get so many CT scans and to ensure the kidneys are able to process the contrast dye. 

Not long until your holiday which I imagine you'll be desperate for. I would go swimming but I'd ensure I kept reapplying the factor 50 and stay in the shade when possible. 

I hope you're doing ok. Xx

Hi Elaine 

So lovely for you to remember ️  had appointment this morning told 31 lymph nodes removed 12 cancerous must admit i broke down in tear not that it was so many the lack of support I'd got i explained this and they couldn't apologise enough oncology was calling at 2.45 to tell me what further treatment I would need mentioned immunotherapy but like you something to do with b raf they have said tablets would be better so waiting on appointment for nxt wk where they said I'd have ecg eco and bloods etc then can start treatment told them I have a hol booked so will start it after that so looking forward to a break and wouldnt want to take tablets have side effects and end up in hospital...

How are you anyway hope you had a fab Bank hol really appreciate your messages nice to know someone care xxx

Aww, I feel for you, that was a tough day! 

At least that's all the lymph nodes out and the CT scan showed no spread. Remember that the stats are good for both immunotherapy and targeted therapy so whatever treatment they decide it's a good thing. 

That's great you can start after your holidays.

In my experience, once I was with oncology and the treatment started the support was brilliant. Any questions, I could email or phone and they responded quickly. I truly hope it's the same for you. 

I'm well thanks. And again, any questions or just a good moan please feel free to get back in touch. 

Give yourself a spoiling, you deserve it!

Take care xxx