[tmcintyreParticipant]

My husband had 5 cycles of VTD and his blood results showed a trace of Protein and minimal Light Chains so he was given dates for SCT priming and harvesting. Unfortunately he developed an infection and had to spend a few days in hospital.

We saw the consultant today and he has decided to delay the SCT, partly due to establishing that the infection has completely gone and partly due to the bone marrow biopsy showing 50% cells.  He will decide next week how to progress, thinking that he might start my husband on Cyclophosphamide.

We were completely thrown by the biopsy results and unfortunately didn’t gather our wits enough to ask what this means.

Can anyone help please.

[janwParticipant]

Hi,

You both must be so concerned and anxious at the delay in the date for the SCT. However your husband’s body needs to be free from any virus or infection when he begins the SCT, because the whole process with the high dose chemotherapy can be quite harsh on your body. I was in the same position last year when my second SCT was planned for the beginning of June, but on the admission date I was diagnosed with the summer flu virus and prescribed antibiotics and antivirals. My neutrophils dropped to 0.8 and my myeloma levels increased which meant I not only needed some time for my body to recover before the SCT, but I also needed two further cycles of chemotherapy to reduce my myeloma light chain levels to the 90% reduction rate required for the SCT.

Your husband’s consultant will be looking for the chemotherapy treatment to reduce your husband’s myeloma levels to as low as possible prior to the STC in order to try to achieve the best possible chance of a long term remission following STC. It’s worth asking your consultant about their reduction target in your husband’s myeloma levels in order to progress onto the STC stage, this should also include the target for the plasma cells in the bone marrow.

It would be worthwhile discussing your husband’s bone marrow biopsy results and your concerns about changing treatment with the nurses at Myeloma UK, so that you can prepare your questions for when you next meet with your consultant.

All the best.
Jan

[tmcintyreParticipant]

Hi Jan,

Thank you very much for replying.  I think what was confusing us was the fact that bloods were showing such good results but the bone marrow figure seemed quite high. I have been reading through the booklets from Myeloma UK to get a better understanding of everything. So far we have basically just gone with the flow as long as the results were going in the right direction. My husband was quite upset and felt that it was the beginning of the end. It doesn’t help that his brother died from the same condition although there were other factors in his case which I mentioned on a different thread.

Anyway, I’ve told him about your experience and he seems calmer and I am more optimistic that the different treatment will have the desired effect. I emailed the nurses as I would like my husband to be able to read their reply rather than me trying to relay the information to him.

Its not too long to wait to see the consultant again so this time next week we will have a plan,

Teresa

[tmcintyreParticipant]

We saw a member of the team yesterday who explained that the bone marrow result was not as low as the consultant would like so my husband is having to cycles of Cyclophosamide and Dex followed by another bone marrow biopsy.

I reminded her that they had stopped Co-Trimoxal after the very first cycle because of a drug rash but had never started the replacement so she will get that started next week along with getting back on Zolandronic Acid.

My husband is very low, he has been comfort eating (using the steroids as an excuse) and has put on lots of weight which is affecting his mobility so I feel he is presenting as more disabled than he needs to be. Looking at other patients in the hospital he is the only one so overweight. When he was first diagnosed he was warned not to do any heavy lifting because of his thin bones so he has done nothing around the house/garden and wouldn’t even carry any shopping bags when we did grocery shopping. He has had us fetching and carrying for him but I am trying to gently ease him back into doing things for himself.

I’m sorry to be such a moaning minnie but I feel that we’ve been in limbo for such a long time and its a strain trying to keep his spirits up and keep on top of his everything.

 

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