[tomParticipant]

Hi everyone
Just to let yous know I have been given “The talk” from top man who treating me …no time scale tbf and I have been fighting this since 2008/9 so am not a giver up er lol….
My friends call me a phoenix lol….am I giving up now….certainly not I will fight this till the end…
Just like to add my friends don’t think you will get the same talk as I got as we are all different….good luck and an onwards and upwards it is ……
Regards Tom xx

[chris55leesParticipant]

Tom thankyou for letting us know what is happening .
I was diagnosed in 2012 and as a new patient new very little about myeloma .
I found reading your posts and the other regular posts so very helpful in understanding this whole Myeloma business and seeing there is hope . Then when new treatments began on the journey reading about the experiences of others made it for me less daunting .

You always finish with onwards and upwards and that positivity becomes infectious.Thankyou Tom for making my journey with myeloma easier ,I so appreciate your posts.
Thinking of you , best wishes and onwards upwards for us all .

Chris x

[tomParticipant]

Hi Chris
Thank you pleased I made your journey easier that makes me feel great…..
Even though I have been given the info I am not giving up…I am going to fight it, I am called the phoenix where I live amongst my friends haha 😂…
Hope your doing well ? Xxx
Onwards and upwards 👆……

[chris55leesParticipant]

Hi Tom

I was fortunate I was on the Myeloma X1 clinical trial and I had Lenalidomide maintenance from May 2013 to March 2020. Then 2nd line treatment and I am soon about to start 3rd line .Even though I am relapsing I feel well .

Onwards and upwards for us and I thankyou Tom for the support you have given through your posts.

Chris x

[tomParticipant]

Hi Chris
I have had five lots of treatment and two SCT’s they tell me it’s getting more aggressive and stopping working though they gave me a sixth lot which was what I had back in 2009 ……that stopped working also ……so I keep checking for new stuff but it can’t be related to what I have prior to all this….
Take care and onwards and upwards

Tom

[jenningskmParticipant]

Hello

I am not a regular forum reader but for some reason I have always remembered and looked out for you. Thank you for all your sound advice and hope, mm treatment is developing so quickly we never know what delights are goung to appear tomorrow, glad you are a fighter rejoining the EU research project is so positive. Onwards and upwards love and hugs xxxx

[tomParticipant]

Hi Jenningsk
I thank you and pleased I gave good advice over the years, still not giving in….they don’t call me the Phoenix for nothing ….onwards and upwards xx

[mulberryParticipant]

Thank you for posting Phoenix Tom, both now and over the years.
When we are first diagnosed I guess most of us think 10 years would be a good innings for which we would be grateful. But years slip by so quickly when we are appreciating life, and a decade becomes a blink of the eye.
I hope the final chapter of you life likewise lasts longer than you suppose, is filled with interest and joy (not just paperwork), that you’ve had opportunities to say things that should be said, and in the end you are at peace.
Your posts will remain one of your many legacies helping those that are dealing with this disease in the future.
I hope I can face the end of my treatment road with equal acceptance. Thank you Tom.

[tomParticipant]

Hi Mulberry
Thanks for your reply, and am pleased I helped people in there hours of need…
Yes the professor told me to be honest when he gave me the talk lol…
Still fighting this myeloma……don’t call me the Phenix for nothing….
And am sure you will be as strong ….onwards and upwards 👆

[sezziemc1Participant]

Hey Tom it’s Sarah McKenzie here. Sending you lots of love. I tried to message but it didn’t work!! Xxx

[tomParticipant]

Hi Sara
Hope your doing well, it’s great to hear from you, yes I tried to message over the years lord knows what happened, came of the group for ages as it didn’t seem to work correctly

Love Tom and Elaine
Xxxx

[raptorParticipant]

HI Tom,
That’s quite a journey that you have been on.
My 51 year old wife was diagnosed with myeloma in 2018, but had severed with back ache for many years prior and was misdiagnosed for 2 years. After 4 reg lines of chemo she has been told to get her affairs in order and suddenly and dramatically she is in immense pain whilst moving. We were hoping for Car-T treatment but we have been told this is not now coming to the UK. There are a couple of other trials and drugs that she might be considered for and we are ever hopeful.
I’m sure they are so very close to finding a cure for this or at least making it manageable in the long term.

xxx

[Author]

Posts