[KevinLParticipant]

As my consultant said last month when for the first time my light chains went down (whilst in remission) "lights chains can go down as well as up". Stay positive

[KevinLParticipant]

Hi Jean

For reasons I never understood they weren't able to use my Paraprotein levels to measure the MM and always worked on the light chains. I know this was unusual. Sorry can't be more help.

Don't be afraid to ask them the direct question about whether the levels need to be zero before SCT – sometimes they won't say unless you ask directly!

Hope Frank is soon at a level where SCT can commence.

Regards

Kevin

[KevinLParticipant]

Nicola

I found the DEX (steriods) to be the worst of the CTD treatment. Like your Dad it seemed to be when I stopped taking them I had the most trouble. I have just finished the CTD cycles and it took a week to to start to feel normal again. Depression and anxiety were horrid side effects but they did pass after a short while.

Hope your Dad is feeling better soon, I'm sure he will.

Kevin

[KevinLParticipant]

Yes I lost my post yesterday – see if this gets through!

[KevinLParticipant]

Scott

Yes the treatment started within two weeks of the diagnosis.

Kevin

[KevinLParticipant]

I was having an MRI scan for a digestive problem when a very alert analyist spotted some vertebrae appeared damaged.

This lead to an immediate referral to a consultant who having seen the blood tests warned me it appeared to be MM. There then followed a fully body scan, MRI scan of spine, and bone biopsy. These combined with the blood tests lead to my diagnosis.

I have now started treatment and on my third cycle the initial treatment.

Prior to all that I had no real symptoms although looking back I was getting very tired and achy but I'd put that down to digestive problems!

Kevin
Sussex

[KevinLParticipant]

Thanks Michele

You're right there are other good news posts I just thought the link here gave a bit more detail and was very uplifting.

Looking forward to feeling so good again though!

Thanks for the reply –

Kevin
Sussex

[KevinLParticipant]

Wendy

I found your post and link very uplifting and encouraging. I've found it hard to find anything about how I can expect to feel when I get through the CTD and Stem Cell Transplant.

Thanks

Kevin

[KevinLParticipant]

The waiting for the results was an awful time as we obviously didn't want to tell the rest of the family until we knew what the news was.

Try not to get too far ahead of yourself thinking about what maybe, concentrate on today and get on with that. The sleeping is a problem as I found my mind tended to race away in the early hours.

Keep as positive as you can.

Kevin

[KevinLParticipant]

My employer has been very supportive. I have been on CTD treatment for a few months and reacted badly to the Dex (steriods) preventing me attending work for over a month. My employer has said if I feel I'd be better at work come in, otherwise stay at home.

I guess it depends very much on the individual employer and perhaps the size of the company.

Kevin

[KevinLParticipant]

Hi Andrea

Sorry to hear your news. I too was diagnosed about the same time as you and have started the cycles of initial treatment. I am 48. As you say the whole thing is such a shock and does make you very anxious about the treatment and the future.

You will read on this forum lots of stories about people who have been through the treatment and living great lives and I find this very reassuring and tend to think of the treatment as my first step towards getting better.

I guess we'll get over the shock of the news and start to rationalise our thoughts – it may take some time though.

Keep positive and keep us posted how it's going.

Kevin
Sussex

[Author]

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