Hello I have Multiple Myeloma for seven years and been lucky to have been treated successfully for this time although without the usual remission. December the drug stopped working and I was told that I was going into renal failure and would die without dialysis I said yes I would try that then told there was a trial drug that I could have on compassionate grounds as I don't meet the trial requirements this drug isn't licensed in UK so have to have it privately. I have the first dose with a one in three chance of it working and it did!! It has impacted on my sight but that is ok once you get your head around it and glasses to help.
I thought I was on track again but then the Melanoma that I had treated one year ago with a left neck dissection returned!! I can't have any of the drugs because of the Myeloma so now I have to see if surgery is a possibility...,
The biopsy showed metastatic melanoma in the lymph nodes left in my neck. I have had a full body PETCT and am having MRI head and neck with contrast on Sunday.Then I wait again. Firstly to see if it has spread and then what can be done surgically as drugs aren't possible.
I really can't my head straight it's like a game of snakes and ladders guess I just sipped down another snake. I am usually strong and stoic and make the best out of every thing but this is madness and I am trying to just keep on keeping on so not to frighten my husband anymore than I have already and to enjoy time with my Daughter and Granddaughter who is five and so bonded to me. I have so much to be grateful for but am greedy and want more time. My head is exploding with scenario planning and trying to just carry on until I know.
I'm trying to live but think as in December I should perhaps be preparing to die. I need to be strong and get my head straight and not waste the time.i have left. I'm sorry to be moaning it's not me at all. Wishing you all good health and happy days. Gally
Hi Gally
I'm sorry to read about everything you're having to deal with at the moment.
Although you've posted in New to the Community I can see that you've been a member of the community for a little while and you've posted before in the melanoma group. Was this where you meant to post this message?
You might also want to join the myeloma group and, if this is something that you'd like to do, clicking on the link I've created will take you straight there.
x
"Never regret a day in your life, good days give you happiness, bad days give you experience"
Hi Gally
You could post in both the melanoma and myeloma group.
Posts in the New to the Community group usually only get seen by people who are new here, so your chance of getting a reply from someone in a similar situation isn't great. That's why it's better to post in the cancer specific groups.
I had both melanoma and breast cancer so know what it's like to be dealing with two different cancers.
(((hugs)))
"Never regret a day in your life, good days give you happiness, bad days give you experience"
