Myeloma

Hi really sorry to hear you have had a hard time with your treatment, it effects every person so differently. It's good that your doctor took speedy action to change things for you. I did 8 cycles of pad chemo and it was the dex that gave me the most grief, especially with my innards and sense of humour !!!! Have you downloaded the info guide from myeloma uk for your kind of chemo it covers side effects and much more. How are you doing in general? It's a big shock for anyone to get diagnosed with myeloma as most people have never heard of it.

best wishes

johnty

Hi there ....

yes it was a total shock and still is...

im 44 and both my gps have never even seen a case of it and they said it’s pretty rare and even rarer at my age....have gone though life up until now with zero health issues so to be hit with this has left me stunned...

been coping reasonably well but obviously there have been tough times mentally.....don’t know if it’s the change of meds in the last couple of weeks or just the reality of it kicking in but been a tough week...

i haven’t downloaded the info sheet but I will...

I have a checkup with haematology this week to check that this treatment is bringing my levels back down so fingers crossed ...

have an appointment/consultation  next week in Glasgow about stem

cell therapy so that’s something else I’m trying to get my head round....

Thanks Reay 

Hi reay, myeloma uk also have a info guide to stem cell transplants, its a good idea to get informed before you see the transplant team as I found the experience quite overwhelming and there is a lot to take in, and you can come out not really grasping everything you have been told. The info guide is the same as the one I got from the hospital and explains everything really well.

the median age for diagnosis is about 65 so you are young but I know of a few people who were in their thirties, I was 54 at diagnosis, the saga of which I will spare you !!!!

i think myeloma is 50% physical and the rest psychological so take all the support you are offered, you've got a busy year ahead of you.

best wishes

johnty

Thanks will have a look at that as well 

Hi Reay I happened to notice that you are going to Glasgow to find out more about a Stem Cell Transplant (SCT). Myself, including a few others have had Stem Cell Transplants in Glasgow.

If you want to connect with these folks and ask any questions you can do this over in our dedicated Stem Cell Transplant Forum where folks from various blood cancers walk the SCT journey together.

Its a good place to talk with folks who are looking into SCT or folks like myself who have been on the SCT rollercoaster.

((hugs))

I know exactly how you feel, I’m 44 myself and was told it’s extremely rare for people so young to get it.

i only had a pain in hip where I thought I’d strained it to be told I had it.

Then to be firstly told it was secondary bone cancer looking for a primary in my chest. When nothing was found  in my chest or head the bloods came back and I was told I needed a bone marrow aspiration. Never do I ever want another one of them in my life. I’ve had two now and so painful jeez.

Then a Consultant said to me its a type of blood cancer called multiple myeloma. I thought that’s ok better than being pickled. Then in his next breath said it’s not curable.  That’s it, you hear that and break down, you feel you been given a death sentence and your life’s about to end.

The hardest bit is sorting your head with all the emotions attached to it, Ive sobbed my heart out over it all I’m not ashamed to say it.

The best thing I have found is the lovely people who tirelessly write on here to people sharing information with expectations and sending their love. Listening to stories where people have been clear several years after and as yet it not returning. I was at a real low point and put a few words on here and within minutes a guy called Greg wrote back to me and really lifted my spirits.

I’ve just started the chemo this week, 6 rounds then stem cell treatment so gonna be tough going.

just have to hope after all that it stays at bay for a while. Everyone’s different but some people only been low for little as a year and have to go through it all over again

The vdt don’t seem too bad at min apart from one red rash on belly where they inject me at the hospital 

I think the most humbling thing is when you visit the chemotherapy unit and you see people even younger than myself going through this and other cancers all as scared as us hoping for good news. I think every one should visit this place as it makes you really appreciate your life and how day to day take it for granted laughing and joking around. You can’t believe how life can change in heart beat literally.

all the best 

Mark 

Hi Mark 

Thanks for the reply , sounds like we are are on similar paths...

yes trying to get my head round it is very difficult especially when you are on the steroids for a few days and you almost feel normal and pain free ....

Have meeting next week re stem cells and as you say yourself you’ve got to hope that after all we’ve got to go through that we get a decent amount of time before we need treatment again...I guess that’s what everyone is looking for ....

I spoke to a guy last week Local to me who has/had a slightly different blood cancer and he has been through stem cells and has been in remission for 3 years and is doing well and he’s also a lot older so he’s given me some hope ......he says the stem cells are tough going but the staff were superb and  that made a huge difference to the whole thing..... 

All the best Reay

How many rounds of the chemo do you have to have before your stem cell starts

I don't know much about it but by sounds of it I don't think I'm going to enjoy having it done. 

Regards

Mark 

Hi Mark, I am not sure if this question was for me but you can see my SCT story by hitting my forum name Thehighlander

Hi Mark 

thatll be one if the questions Ill ask next week so will let you know what they say....

the SCT doesn’t sound like it’s going to be nice in any way but what can we do...?? It’s got to be done .....going to read a bit more on the forum of other people’s experiences and whats the best way to prepare yourself for it ....

reay