[buzzParticipant]

Hi Dawn, hi all on this post!

Many thanks. And lots of luck to you too.

My lightchains are shooting up. Gone from 250 to 600 in 2 weeks so I start with Velcade and dexamethasone next Friday. Trying to stay positive but the fact everything seems to have come back  only 11 months post SCT and so quickly feels very worrying.

Any positivity you want to push my way feel free!

Onwards

Buzz

[buzzParticipant]

Richard

Many thanks for the quick response.

Agree with the working and the exercise! Helped me no end so far.

Will keep you posted; hoping for an update in the next few weeks. Given the rapid rise in my light chain numbers I’m expecting to have to make a decision fairly quickly but will try to get as much info as I can beforehand.

Have a good weekend!

Buzz

[buzzParticipant]

Hi Rob

Many thanks for your reply. It has helped me put a bit of perspective on the return of the myeloma. I think it is now time I started to try to understand this disease a bit more and also what my specific type is.

Having followed the Myeloma XI trial and got through it relatively well and then had  the SCT and again responded well I gave very little consideration to what would happen when I did relapse so I am now trying to work out what my next course of treatment might be.

My consultant seems to be implying I need to move on to a different treatment soon as the last 3 light chain readings were 26 then 98 and now 250 over the space of 3 months. As I am on the trial I am tested every month so I guess we will need to see what this months are.

So many questions! Fully understand you are not an expert but if you have any advice as to what I should be asking that would help.

4-5 months Post SCT I was out on my bike doing 60-70km on some rides! I am now working full time and my energy levels are not quite as good but I can walk for as long as I need to and have just spent 8 hours going around Harry Potter studios with my kids last week!

Thanks again for your reply, would be very grateful for any more insights.

Buzz

 

[buzzParticipant]

Hi Jan

Just read through some of your earlier replies and looks like you have already answered most of my questions!

However happy to hear from you again if you get a chance.

Buzz

[buzzParticipant]

Hi Jan

Many thanks for your reply. It has helped me put a bit of perspective on the return of the myeloma. I think it is now time I started to try to understand this disease a bit more and also what my specific type is.

Having followed the Myeloma XI trial and got through it relatively well and then had  the SCT and again responded well I gave very little consideration to what would happen when I did relapse so I am now trying to work out what my next course of treatment might be.

You appear to have had a long treatment free period where your light chains went up and down and you did not start treatment until they went above 2000. Did you have a bone marrow biopsy? Do you know what % this showed ? Also how were your neutrophils at this time?

My consultant seemed to be implying I would need to move on to a different treatment soon as the last 3 light chain readings were 26 then 98 and now 250 over the space of 3 months. As I am on the trial I am tested every month so I guess we would need to see what this months are.

So many questions! Fully understand you are not an expert but if you have any advice as to what I should be asking that would help.

For what it’s worth still feel relatively fit. I am working full time, I can walk for as long as I need to and have just spent 8 hours going around Harry Potter studios with my kids last week!

Thanks again for your reply, would be very grateful for any more insights.

Buzz

 

• This reply was modified 8 years, 9 months ago by  buzz.

[buzzParticipant]

Hi All

This is my first ever post on the forum. I was diagnosed in Aug 2014 and due to my youngish age (now 48) I opted to go on the Myeloma XI trial. I had CCRD for 4 cycles responding very well with levels of over 2000 dropping to virtually zero after 2 cycles then to nothing.

I had my stem cells harvested and had an auto SCT in February 2015, was also given Revlimid as a maintenance treatment and until 2 days ago was told I was in complete remission. However it appears the MM has now broken back through with my levels now at about 250.

I WOULD LOVE TO HEAR SOME GOOD NEWS RIGHT NOW!! It really feels like I went for the gold standard treatment and got a relatively short period of remission. Now I am waiting to hear what my options are but I feel lost and confused, almost worse than when first diagnosed. I guess I put too much faith in SCT and now want to know what I can expect or hope for.

Feeling very frightened and low and my wife having been a pillar of strength is really down so I thought it best to seek some support and information on the forum.

Thanks for reading this. Any replies welcome and suggestions for coping gratefully received.

[Author]

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