New to the group

Sorry to hear about your recent diagnosis Prospero.  You must be in a state of shock. Although I wasn't given the same diagnosis I wanted to reply as you'd had none after five hours and I know there are a lot of people on here who are continuing to have successful treatments for stage 4 and I'm sure one of them will reply soon.  Look after yourself and your family first whilst you absorb the new info and treatment plans. Take care x

Hello Prospero, I think it would be worrying if you weren’t scared, The uncertainty is for me worse than any symptoms although I had surgery on Thursday and still feel rubbish, not where the surgery was but I’m having difficulty wanting to eat, coping with wind or sickness after I’ve eaten or drunk anything and waking up at night with more of the same. My original diagnosis was a long time ago now my story can be read in my profile (click on my user name). I should be very grateful that as far as I know things are still only in lymph nodes but boy at the moment, I’m having difficulty at times but that’s ultimately very expected to, I hate blips.

Until we know how well treatment works it feels a bit like being in no mans land, I forgot to click on your profile so don’t know if you’ve started treatment yet. It sounds like you are still positive so that’s good as when immunotherapy works it works well much better than chemo that other cancers have, a real promise of getting back to no evidence of disease. I will keep my fingers crossed for you that you face the things you need to do in case it doesn’t, and then can concentrate on enjoying things going forward and taking every win presented to you. 

I should start some targeted therapy drugs soon so it will be a bit like me starting all over again with a new diagnosis, but I have my own previous experiences which I hope will help rather than hinder the feelings going forward. I see my oncologist on Wednesday next week and we will see how that plan is coming along. 

Hi KT,

thanks for replying.

I hope you’re feeling a little better now? Sounds like you’ve really been through the mill, physically and emotionally,  but you sound quite resilient and positive despite the blips.

I guess once you’ve seen your oncologist tomorrow you can come to terms with the next chapter in the book called cancer?

I’ll keep my fingers crossed for you and for a good outcome.

I’m awaiting one final PET CT scan before I can start treatment. I’ve signed the consent forms for a clinical trial of a new telemerase treatment  but it requires more tests and a final sign off before I can be sure I’ll be accepted onto it.

I’m hoping I’ll start treatment next Monday. Either the new treatment followed by the dual immunotherapy treatment , or the standard dual drug treatment.

Either way I just want to get in with it. I can almost feel myself getting more sick with every day that passes and I just want to get on with it now.

I’m lucky that the hospitals near where I live have been amazing in terms of speed of appointments for consultations and scans, so I’m hoping they’ll pull out all the stops and I’ll be good for next Monday. We’ll see.

good luck KT, I’ll be thinking of you.

Take good care.

B

Hi ,

I thought I’d sent a reply last week but it’s not showing here.

Thank you so much for replying and for reassuring me.

It helps to know there are people there who are also living with this and who care enough to share their experiences,

take care and good luck with whatever you’re going through.

B

Hi Prospero, how are you getting on? 

I see it's been 4 days since you posted and just thought I'd check in with .  Hope you are getting some concrete plans for treatment. X

Hello there,

it’s been a mad 10 days but I’ve finally started treatment. I’m lucky to have accepted onto a clinical trial and had my first dose of the new Telemerase “vaccine” yesterday. Two more treatments this week then onto the vaccine plus dual immunotherapy drug treatment from next Monday.

My latest scan showed that the cancer is progressing, which I guess is no surprise pre-treatment, but was still a little upsetting. But hey, I’m being treated and there are reasons to be positive.

I hope you’re doing ok and managing to enjoy your allotment, even in late autumn.

take care.

B

Hi Prospero, I’m glad to hear things are moving on, in that you’ve been accepted and started the trial. It brings a new umpffness into things doesn’t it. They expected progression on a baseline Scan is the down side though but it’s there just to tell us what we have had to beat. I’ve had my baseline scan but not the results, 

I’d been feeling and being sick so it’s nice to have that phase finished with, I’ve been very fidgety so hadn’t caught up on Macmillan messages so it was nice to come across yours. I tried to look up your trial but haven’t found it yet. I’m not surprised though as it took a while for me to find mine too. If you have a link you can put in I’d be interested to read it. 

Hi Prospero.

I was clear from stage 2 melanoma for 8 years untill this year January it came back with a vengeance. 

I'm now stage 4 metastatic as it was in most organs including the brain. I was put  on immunotherapy,  had 4 months but it didn't agree with me. I had gamma knife which was pinpoint radiotherapy to the spot on the brain which has shrunk it. 

I'm  now on targeted chemo which is an oral medication everyday. 

I count my self lucky that my body does respond to it but like others the hardest part is the unknown. For how long.  

I'm lucky I'm able to continue life exactly the same.  A little harder work but mostly the same. 

So for now all good! 

That's really good news Prospero, I'm very pleased for you and hope the good meds shrink and kill all the nasty melanoma!

Scans right now will of course show only current stage so the next lot will be a better indication or progress. I'm due 4th dose of Pembro on Monday and have scans booked for December, only hope the results are good and come back before Christmas.  Yes I'm still on my alottment, sprouts, cauliflower, Cavelo Nero kale, spinach, chard, cabbage and leeks still growing.  I've onions, pattypan squash, courgettes, butternut squash, pumpkin, pink fir and other potatoes stored in a shed. I've had the plot for two years and it hadn't been dug for at least ten years so hard, enjoyable work. Even now the autumn sunshine  is lovely.   I hope you have things you love doing to keep you busy right now and to help keep your mind in balance.

Take care and let us know how the treatment goes x L