Another one with Myeloma

FormerMember over 15 years ago

8 replies
13 subscribers
10618 views

Hello. New to this site and posting for the first time.

I am a fifty year old man who has recently been diagnosed with Myeloma (Bone marrow cancer).

I am on month four of chemo (CDT) and okay other than rubbish side-effects from the Steroid. That's Dexamethasone.

I am feeling positive though after getting over the initial shock, and I am sure I can kick the daylights out of this cancer.
Life has changed hugely - no more working for at the moment - had to give up my business and for the time being, my band.
Living off £62 per week benefits is a sudden change too, but my wife has a full time job, thank goodness.

I also have a very dear 6 year old daughter who is worried about me being unwell, but doesn't know the full score.

Anyway, think positive thoughts if you can. It is tough but we may be able to beat this rotten disease if we are determined enough. Anyone who needs a chat is welcome to PM.

Best wishes.

Hoops.

FormerMember over 15 years ago

You're right - it is a rotten disease bit it can be beaten for a long time. Just enjoy your family and don't worry about the future - my husband keeps telling me that there's no point in worrying about the things you can't change and he's right.

FormerMember over 15 years ago

I have sent you a pm with some info

Gillxx

FormerMember over 15 years ago

Thanks Gill and to everyone who replied and sent PMs.

Month four is a lot easier with a reduction in most of the naughty drugs, so I am looking forward to feeling a bit more "normal" again. I am going to keep up my music and stay with the main band on and off and even start up one of my old bands again. It is the only thing resembling work that I can do, even though it is unpaid.

I have total confidence in my Consultant Dr Stern who is a nice chap and knows everything.

Chins up, everyone.

Hoops.

FormerMember over 15 years ago

Hi Hoops

I was diagnosed MM April 21st/ 09 , I start CDT end of June . Delayed due to recent hysterectomy and post op infections :(

Glad to hear the CDT is going ok for you. Is the reduction due to your lvls improving?

I'm dreading taking that first pill................

best wishes
Sue

FormerMember over 15 years ago

Well I have now got a paraprotein level of zero. That is quite unusual, I think especially after only three cycles of CDT.

However, I have just spent three days in hospital due to Deep Vein Thrombosis in one leg and diabetes which has just been diagnosed this week.

Keep your eye on blood-sugar levels chums, as I now believe that some of the "bad side effects from CDT" might have been diabetes.

Diabetes and DVT are apparently possible side effects when you have CDT.

The position now is that I take an extra tablet per day for diabetes and inject myself in the stomach for the DVT :-O

Waiting now for a date for SCT.

Over and out. Hoops.

FormerMember over 15 years ago

Hi Hoops,

My husband was dx last June at age 48. He'll be 50 this August. We have been dealing with Myeloma now for almost a year, actually longer if you realize he had it for a while and we didn't know, but ignorance is bliss or so they say. He went into remission straight away with the oral chemotherapy Thalidomide/Dex. And yes the Dex can be unpleasant. Anyway, we went the SCT route here in the states.

We have a Myeloma group on WhatNow. Go to Groups and look for Myeloma Let's Talk! Go in there. You can either send a join request or you can just look at the many links that are posted there to help you find things you are looking for in the way of information. I'm sure you know by now there is lots of information on the net that doesn't really help you understand what's going on.

Best,

Lori

brew123 over 3 years ago

Hello started with myeloma last december 2020 treatment started jan 2021 had stem cell transplant 10 th august 2021 had great family support now feeling a lot better hope to get back to work soon I have 10year old daughter just like to wish you all the best if they say transplant go for it .I am 65 just keep thinking positive it works ,blood very good .

Thehighlander over 3 years ago in reply to brew123

Hi brew123, this discussion was put up 12 years ago, I do hope that the folks on the discussion are doing well.

We do actually have a dedicated Stem cell transplant group where you can talk with others who have walked the walk - I have had two Allo (donor) SCTs June 2014 then Oct 2015 and ai am doing great,

Mike (Thehighlander)

It always seems impossible until its done - Nelson Mandela

My cancer story