That was a sh*t day!

[NDA]

Tumbler said:

NDA said:

Perhaps I misunderstood - you're going to be OK aren't you?

Currently my prognosis is poor, more than a year but likely to be less than 2, but I'm mindful that progress in cancer therapies is constant, so I remain hopeful of remission in the future.

What miserable news to hear - I'm sorry.

Are there more positive outcomes from other geographies? Different treatments?

Probably a stupid question as I suspect you've looked.

[Tumbler]

NDA said:

What miserable news to hear - I'm sorry.

Are there more positive outcomes from other geographies? Different treatments?

Probably a stupid question as I suspect you've looked.

With under 300 cases in the world, there are no clinical trials available, I have sent my medical records to the USA as there is one Dr who is keen to try and find a cure, many of the woman who have this actively fund this research along with those families who have lost loved ones.

Some have tried immunotherapy without success and there is the option to have further surgery but that rather depends on which organ it attacks next and how much damage it does between 3 monthly scans.

I'm not miserable 😊

[mattyn1]

Can I ask a question Tumbler..... what to you mean by actively funding? And how much does treatment cost in the States?

[Tumbler]

mattyn1 said:

Can I ask a question Tumbler..... what to you mean by actively funding? And how much does treatment cost in the States?

Treatment is largely covered by insurance, there is some funding from drug companies when using a drug that does not have a proven record, it gets complicated because you need a clinical trial of anyone drug and this requires 500 patients. The research isn't funded in our case, because thankfully (or not depending on your view) there are just too few of us. There is one Dr who is collating information from patients across the world both those actively in treatment and deceased.

[Berkshire bred]

Tumbler said:

Treatment is largely covered by insurance, there is some funding from drug companies when using a drug that does not have a proven record, it gets complicated because you need a clinical trial of anyone drug and this requires 500 patients. The research isn't funded in our case, because thankfully (or not depending on your view) there are just too few of us. There is one Dr who is collating information from patients across the world both those actively in treatment and deceased.

Just read through your posts about your condition. I'm sure you've heard it a thousand times but you have my sincerest condolences. Hearing things like this make me even more grateful for being healthy and determined to enjoy life, sorry if this sounds like a tasteless comment, it isn't meant too. I wish you all the best and to be as happy as you can, from some stranger on the Interweb

[mattyn1]

Berkshire bred said:

Just read through your posts about your condition. I'm sure you've heard it a thousand times but you have my sincerest condolences. Hearing things like this make me even more grateful for being healthy and determined to enjoy life, sorry if this sounds like a tasteless comment, it isn't meant too. I wish you all the best and to be as happy as you can, from some stranger on the Interweb

Echoed countless times I am sure - to Tumbler and everyone on PH and beyond who is suffering. Education is the key for us to support - take DKMS for example - it is so simple to register, and one day you can make a difference to someone.

This has been a great thread for me - I cannot thank enough those that have offered good wishes, those that have gone the extra bit to help, and make Jacks recent few months memorable. I am sure we will continue to do what ever we can.