[ann666Participant]

Hi All

I have been living with Myeloma for the past year but this is the first time I have posted on the forum although I have read others peoples post.

I Have so far been on CTD and had a Stem cell transplant last August unfortunatly at the 100 day bone marrow biopsy the myeloma was already 40% back on my bones.

I have been offered now to go on a MUKfive trail with a donor transplant  or to go on Velcade with a donor transplant in the summer.

Does anyone have any advice for me  or been in the same situation

regards

Ann

 

 

 

[MrsLParticipant]

Hi, so sorry you seem to be in a similar situation as myself. I was diagnosed August 2013 and after 6 cycles of RCD on the Myeloma XI trial I had SCT in May. My 100 day check showed a low level bone marrow infiltration and further tests in October/November confirmed relapse, with the bone marrow infiltration rising to 38%. I was offered the MUK5 trial or to start VCD. I decided to opt for VCD as it can be given at my local hospital and started straight away whereas I would have had to be referred to Leeds for the MUK5 trial. I could have been put on VCD on the MUK5 trial anyway or the newer drug which may have fewer side effects than Velcade. It is a blow to have gone through initial treatment then SCT and then no remission but we have no choice but to get on with the next stage of treatment. I hope it goes well for you, I have read of others reacting well to VCD.

Good luck, Linda

[ann666Participant]

Dear Linda

 

Thank you for your reply.

I saw my consultant on friday to discuss my choices, I had decided to to go for the velcade instead of the trail, but in the end my blood were not great so the consultant said he wouldnt have been able to recommend me for the trail anyway as i needed to start treatment right away.

I am off this afternoon to my local hospital for my treatment to start. I must say the care I have received has been second to none.

How are you, are you coping well with your treatment?

Best wishes Ann

[MrsLParticipant]

Anne,

Unfortunately my first cycle of VCD was interrupted as I had an unrelated infection but last week I restarted and I am half way through the second cycle. I haven’t quite got used to the ups and downs of the different days yet. The dexamethasone causes sleeping problems but I haven’t had any bad nausea from the cyclophosphamide.
My main problem is a very low platelet count, this is being caused by the Myeloma, I think the IgM lambda Myeloma I have is more prone to this, but as the velcade also lowers platelets it is a bit of a catch 22. So at present I am seeing my consultant every week and she prescribes platelet transfusions before each velcade injection. They say it will take 3 cycles before we can see how effective the treatment is being.
I have also been referred to see the top man at Leeds to discuss future treatments, in case this doesn’t work or ready for the next relapse. Nice to know there are other options to discuss.

Hope you’re treatment goes well.
Keeps in touch.
Linda

[Author]

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