'Alternative' treatments and clinical advocates

I’m Hi , welcome to the online community, although I’m sorry to hear about your close family member, I’m just hoping that as you have said that they are relatively healthy that the few Ipi treatments they had are continuing to help there immune system. I’m a patient myself diagnosed with advanced melanoma nearly five years ago, but have been luckier in my treatment and have not needed to look beyond the NHS, I can only imagine what that is like. At the start of my diagnosis I heard of people going privately when all NHS treatments had finished and trying a treatment where it was £70k plus any additional hospital costs for adverse reactions which meant a sum of 125k was talked about for treatment in Manchester. I don’t recall a recent discussion on that treatment. 

I was thinking if no one replies with the relevant first hand experience that your seeking about treatments and a clinical advocate if that’s possible, you might want to talk to some professionals about your concerns. The Macmillan support line is open 8am to 8pm on 0808 800 0000 they have access to professionals and can also help with talking you through preparing for the end, which is a big topic and provide by booklet or download the booklets of information they have.

There are other charities that help people talk through melanoma treatments I am putting a link to melanoma focus that also has a phone line that is supported by nurses.

https://pda.melanomafocus.com

and https://www.melanomauk.org.uk also has a support line but I have no experience of their help.

There is also a group on here for peer to peer help for people supporting someone with incurable cancer but it sounds like you may not be ready for that group yet but if you wish to have a look take a look, the link is below.

https://community.macmillan.org.uk/cancer_experiences/supporting_someone_with_incurable_cancer/discussions

I hope some of the links are of some help.

Hi Brenden, sorry to about what you and yours are going through.  I see that KT has already mentioned in her reply the private treatment in Manchester.  I have been through the ipi/nivo treatment myself, unsuccessfully so, and am now pursuing TIL therapy in Manchester. I am lucky that I have critical ilness insurance cover, as the costs are in the range of what KT mentioned.  I know that there are clinical trials for TIL as well (at Guys and St Thomas, and maybe other hospitals) currently on hold due to covid, but hopefully due to restart soon.  Good luck!  R

Hi KT, 

Thank you very much for the reply with some very helpful links. 

It does seem that the situation has changed quite dramatically since my last message. We've been told that quite rapid progression has occurred and that only to expect a few more months. It's obviously been heartbreaking and devastating for the whole family and it seems even more cruel that they won't get the 'benefit' of some last hurrah in the form of going away or having a party or anything - due to Covid. 

I will explore all the options in terms of support and try and share this all with family, where I can.

Thank you again, even though I have not replied previously - this message shouldn't serve any other message than gratitude. 

Thank you Ruxandra, I am sorry to hear that you are in a similar position. As my message above demonstrates, things have changed quite dramatically for the worse over here. Though at least pain isn't an issue - a confusing situation that must be, barely any pain and being told you have a deadly disease doesn't marry up to logic for me. I don't know how anyone copes. 

I have looked into TIL - it looks as if the trial aspect is a no go, due to the progression and a number of other exclusionary factors. Though I will look as a last chance saloon to see whether this treatment is available privately. 

I wish you all the best with your treatment and really hope you can go the other way and into good health.

Thank you for getting back to me brenden_1, but I am sorry to hear of your relatives dramatic change. 

Take care and you know where we are if you want an online chat. 

Thank you Brenden.  I know what you mean about pain.  I guess that the lack of pain allows cancer to spread out so quickly.  Although, I can tell you that it is definitely not pain free if it gets to the bones...

 Another route that you may think of exploring is doing a full gene sequencing of a tumour (assuming that the hospital still has the original biopsy).  I have done this at Oncologica (cost around £2.5k). They may be able to pick up on tumour mutations that respond to treatments usedfor other types of cancer.  In my case they discovered a mutation for which phase 1 clinical trials are due to start shortly.  

All the best!