[ruth75Participant]

Hi, not posted much but will try to explain the situation. My ex husband (father to my four children) was diagnosed with Myeloma in late feb this year. When he was admitted to hospital his pp level was 115. The consultant said this was very high but I didn't realise how high until recently. On discharge 10 or so days later, after four plasma exchange treatments they were 71.

He started on the Myeloma X1 trial more or less straight away and was told that after four cycles he would have a SCT. They also mentioned bone marrow transplant and arranged for his two brothers to be tested for a match.

He is now on the 4th cycle of chemo and was told last week his latest pp levels are 45 and they want to postpone the SCT for 2 more cycles as they had hoped the levels would have dropped more. Also neither of his borthers is a match for bone marrow so he is now on the donor list but has been told it is unlikely he will get a match. My understanding is that if a match came up he would have to decide whether to go for the SCT or bone marrow transplant, which I gather comes with more risk but better long term results?

He also suffered a severe compression fracture of the spine about 10 weeks ago and is making a very slow recovery from that but is getting there.The consultant has said they 'may' look at pinning his bones once it has healed more.

Anyway, these paraproteins – is the fact his are still quite high a bad sign? What will happen if they are still 'too high' after the 6th cycle of chemo? Does this mean he isn't responding to treatment? It's all so confusing and worrying.

Oh, and he is only 29.

Thanks.

[zasrsParticipant]

Hi Ruth

I feel you need some proffesional help with your questions, is there a specalist nurse or someone at the hospital who could help. The staff at myeloma uk are also very good at answering questions.

Hope you find some answers!!

best wishes

sarah

[MikeTallParticipant]

Hi Ruth, I'm Mike and I was diagnosed Feb2010 and had high paraprotein levels. Mine was found via blood tests at the doctors.
Paraproteins are only part of the picture and up to 8 cycles (the number I had)of Chemotherapy is common. The response that he has had after 4 cycles I think is good progress. My paraprotein levels took longer than most to come down, and only got to 11 by the time they did collection of the stem cells for my SCT. It is better if possible to first consider an Autologus transplant,(one using his own cells)and reading your post, it still sounds infinitely possible that they can do this and just for now a donor won't be necessary.
I had my SCT Christmas day, and although it has taken me a few months to get my strength back, I am doing OK at the moment, so it is not all bad.
I really do think that you should contact either a Clinical Specialist Nurse at your local hospital or contact the number at the top of the page and talk to Ellenwho will give you all the advise and support you need.
If you still have questions I can probably answer from my own experience of treatment.
Mike.

[DaiCroParticipant]

Hi Ruth,

Being so early in the clinical response this is definitely a case for the medics to answer. A good starting point would be a call to Ellen and the team here at Myeloma UK and be guided from there.

The strength of this sufferer/carer community that has built up around this discussion group lies in the sharing of experiences, medical and domestic while demystifying some of the processes and procedures and generally supporting each other through the thick and thin of living and dealing with myeloma.

We leave the medicine to the medics… for everything else we are a masterclass.:-)

Dai.

[JetParticipant]

Hi Ruth

I remember you posting when your ex-husband was first diagnosed and I know you're in a slightly difficult position, a bit on the outside of things, but still affected and concerned.

I think I previously mentioned that you can contact the specialist nurse even though you're not the current partner to the patient. Certainly here in Nottingham, the hospital team have made it clear that they are there to support the carers/family as much as the patients. And they have been great about answering even the oddest-sounding questions.

The questions you are asking can only really be answered by the medical team, so I hope you manage to get answers that reassure you, but I would generally concur with what Mike has said above.

Best wishes
Jet

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