Jane is a haematology nurse with extensive experience in stem cell and bone marrow...
My husband had his SCT in January 2018 and he’s been on maintenance treatment since then of Ninlaro and Dexamethasone. This year he’s been having telephone consultations after each 4 weekly blood test. For the very first time he’s been told his blood tests show that he is in “complete remission”.
Of course we are delighted and he’s a very happy chappy but I have a slight worry. At the end of his 6 month induction period his bloods showed he was clear but a bone marrow biopsy showed he still had 50% abnormal cells which is what it was before treatment. There was a change in treatment and he was lucky to get the trial drug Ninlaro which worked well for him and he could have SCT.
He hasn’t had a BMB since May last year. Should I trust that the consultants have taken into account that he was a non secretor? I really don’t want to upset my husband by bringing it up
First of all, fantastic news to read about your husband, this is really good news and you should definitely celebrate it.
In terms of your dilemma, I think are principally two options, either go back and ask for clarity from the consultant or let it go and trust that they will contact you if there is anything you need to worry about. Over the past 4 and a half years, I have been in both camps and there really is no right or wrong answer. It is good to have all the information, but sometimes the information can be all consuming and you can forget to enjoy living without constantly thinking of cancer. Sometimes, though, you can live in denial and miss something important. At the moment, I am living in the latter camp. At my last 4 monthly check-up in May, my consultant said, “Great news, there is still no sign of paraprotein in your blood. There was a slight increase in your light chains but that could be due to infection”. The consultant meetings are so quick, I never find I have time to respond to what I am hearing, it’s only when I left the meeting that I reminded myself I had light chain myeloma with never a big paraprotein, so the consultant’s comment was a bit meaningless and worrying in equal measure. What to do about it? Ring them back up or get on with things, wait to the next catch-up and deal with things then? I’ve decided to do the latter, but the context for me is that there was a point a few years ago that I was ringing my team on an almost daily basis and definitely was suffering from some form of hypochondria, which of itself was making me poorly. So I try now to live with what they tell me - if they say I don’t need to worry, I don’t worry. This is working for me now, but there have been times when I couldn’t rest until I knew everything.
So to cut a long story short, there is no right or wrong, you should probably talk to your husband and make a conscious decision about how you want to go forward in this scenario.
Hope this helps and I’m wishing you all the very best
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Many thanks for your thoughtful reply. Right from the start we decided to let the experts worry about the facts and figures and don't even know what kind of Myeloma Dave has although I did see in some notes that its Kappa Light chain. Because his brother died with the disease Dave wanted to buckle down and just get on with it. His initial worry was that he would be dead within 6 months and now 2 years later he is happily looking forward to meeting our first grandchild.
We have met a man in clinic who spends the whole day of his appointment in stress, anxious to know the results of his blood tests and constantly asking the nurses to let him know when the lab send them through. We have also seen people with folders where they write everything down. That's not for us as we don't know what the figures mean.
Since he's been on telephone consultations he knows his paraproteins are undetectable and his light chains are normal and all other functions are normal, the nurse tells him verbally and then sends a letter with the figures. Last month his CNS asked when he'd last had a BMB so perhaps the team will decide if its necessary to have it done this year. As he is on a trial drug presumably the drugs company is monitoring as well as the hospital.
I don't want to discuss this with my husband, he is so happy and for the first time feeling that he has a future. I think for now I will have to trust that his 4 weekly check ups are doing the job and put it to the back of my mind. We are back in clinic for his next appointment.
After all this time I think hearing the words "Complete remission" has thrown me a bit as they've never mentioned remission before and perhaps its taking a while to sink in.
I wish you all the best in your journey
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