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Hi – I’m a new member and writing on behalf of my husband who was diagnosed with Myeloma back in February this year. He had a Para Protein level of 40.7, a 75% presence of Myeloma in his bone marrow and they discovered he had 9 compression fractures in his back. He had 2 operations on his back to stabilise it before chemo and this made a huge difference to his mobility and pain. He finished 6 cycles of VTD on the 15th October and his Para Proteins had dropped to 5.3. He had stem cell harvesting the middle November and although it took just over 2 days to get the necessary stem cells all appeared to be going the right way. We went in for the transplant on Monday but, unfortunately, because the Para Proteins had risen from 5.3 to 10 from the results of the blood test taken on the 15th November they decided to do further blood tests to check the current level. We were all psyched up for the transplant so it came as a huge disappointment but we quite understand the reasoning behind not doing the transplant at that point until they had the latest blood results. Has anyone else had this experience of the Para Proteins elevating again in between finishing chemo and having the transplant, does this mean his Myeloma is more aggressive as the chemo didn’t hold the Myeloma, and has anyone had this happen but have gone on to have a successful transplant and a long remission? Maybe we have just been really lucky along our journey so far as we haven’t really had any blips but since Monday I’m finding it hard to be as optimistic as I have always been. He has received excellent care and treatment from the very start and we are not doubting the decision that was made on Monday but I’m just looking for reassurance that this can happen and yet can still go on to have a good outcome. Thank you for your help and advice.
Hi Caroline,
Your husband’s experience is exactly the same as one of the newer members of our local support group, who has started a new treatment rather than the stem cell transplant he was anticipating starting a few weeks ago.
You have probably heard myeloma being described as “an individual journey” I think this is an example of that. We all seem to have blips of one sort or another.
I don’t know whether it necessarily means that the myeloma is more aggressive per se (I think only his doctor could answer that), but my understanding is that the stem cell transplant is likely to be more effective if the myeloma level is as low as possible (& possibly stable). Another drug used as a second induction treatment might well get your husband’s paraprotein levels right down which produces a better result in the longer term.
I think it’s evitable that you will see this setback as very worrying, myeloma is a very stressful disease, it has this tendency to hit us with some new problem from off side, just when we think we have some control, and a plan in place. It is devastating and worrying in the extreme when plans have to change. It’s only in hindsight that we realise that we can, and have, dealt with the blip. The positive thing for your husband is that he has responded to treatment, that his paraprotein level has much reduced from the level at diagnosis where it was causing damage, and that your husband is a lot better physically than he was 10 months ago.
I hope that your husband’s team put together a new and effective plan for his treatment, and in the meantime you are both ok.
Hi many thanks for your response – yes, it has been quite stressful since Monday wondering if this has happened to others and feeling out of control and not knowing what happens next. We have another meeting with the team next week with up-to-date blood results so I’m hoping we can have some reassurance about the way forward.
Hi Caroline, we just had the same thing with my Dad. VTD finished at paraprotein of 7 in the middle of Nov. Then we had blood tests, and then started the Cyclo and GCSF injections. The blood results came back with paraprotein rising to 10. Consultant wanted us to continue with the Harvest, which happened successfully today. Meeting him next Friday to decide the plan forward.
I wasn’t sure going ahead with the Harvest was a good idea if his levels were rising, as isn’t it then harvesting more bad cells too? Not sure.
I am guessing Consultant will want more bloods taken and maybe another biopsy to see where we are. He has stressed that Paraprotein levels are a surrogate for biopsy, which is the only way to see true Myeloma activity. I know that many have varying levels of Paraprotein for stability for a long time. So hoping for the best next week.
Please let me know how you get on. All the best.
Hi, from what I understand, as we asked this question ourselves, if the paraprotein level elevates slightly before stem cell harvesting, the very clever machine spins off the stem cells and any other cells that slip through are eliminated by the very high dose of chemotherapy as part of the SCT.
We have a meeting next week to hear what happens next, I’m guessing more chemotherapy to try to reduce the paraproteins again- we are just hoping they have stabilised. It has been a difficult week for us, more so myself I think, as we had psyched ourselves up for the SCT on Monday, moved into the cottage at the QE and thought the meeting with the Doctor was almost a formality so it was a complete shock to hear they didn’t want to go ahead although we completely understand and support their reasoning. I’ll keep you updated. Best wishes.
Hi Caroline123, I hope the hospital came up with a treatment plan and that your husband is doing well. Best wishes, Jane.
Dear Jane, the last few weeks have been a bit of a blur but a new plan was put in place really quickly and my husband has had the first cycle of a treatment plan called DT Pace. It’s a more aggressive chemotherapy given as an in-patient and infused continuously over a period of four to five days and I think he is probably going to have two cycles, all depending what happens to his paraproteins, and then follow on to the transplant quite quickly. He came out of hospital last week and has been monitored really closely ever since with blood tests every couple of days to check his levels. He’s coped really well but it has hit him quite hard and as his neutrophils are now zero and his platelets 35 he is really vulnerable and we are living very quietly and just trying to get him through safely to the next stage. It’s a worrying time but we are trying to stay positive. Hope you are okay.
Dear Caroline, it’s good to hear that your husband is responding to DTPace, hopefully he’ll be able to have the SCT soon. I hope that you both have many better Christmases and New Years in the future. With very best wishes, Jane.
Hi Caroline, Jane. Our consultant meeting on 17th December also wanted dad to go onto D-PACE (no T as he thought its effect has been maximised). However they did more bloods that day which came back last week and the Paraproteins came down from 10 to 5.2. Surprising but then he wanted a bone marrow biopsy to confirm what will now happen before biopsy. If the biopsy results are similar reduction, to around 5% from 10% in Oct, then he will go onto oral drugs until transplant, otherwise he might still want to do D-PACE.
Talk about a rollercoaster. Good luck with the DT-PACE, it seems to be the best path.
Dads results:
59 para start of vtd
7 para end of vtd
10 para week pre harvest
5.2 para week post harvest
Hi Caroline & Sachbarnes
I read this and thought of both of you.
On an international forum a very knowledgeable person with MM that I’ve followed for several years said that her MM was very slow to respond and her Dr tried several different drug combinations but even so it took 2 years for her paraprotein level to get to Partial Response (which I think is defined as 50% of the level at diagnosis). She has never achieved a Complete Response, but is still at that stable PR level, on a low drug dose, 11 years later…..
It just demonstrates how individual our myelomas and our responses are.
Hi – many thanks for posting – that’s really encouraging. We are back for meetings with the consultants tomorrow and Tuesday and should find out how effective the first cycle of DT Pace has been so we have everything crossed that it’s knocking the paraproteins right back down. He should then start cycle two very soon. He was quite poorly after this latest chemo but picked up again very quickly and has managed walks with the dogs over the fields which he hasn’t wanted to do for months! I’ll keep you updated. Best Wishes.
Thanks for the info both. Unfortunately we are still waiting on Dads Bone Marrow Biopsy taken just before Xmas. Its so frustrating that we are still waiting, and our consultant obviously cant make a plan until its done. Just hoping it shows a reduction, and then Dad will go onto RD until Transplant.
However he finished VTD middle of November, so we are already at 2 months without any treatment (not counting the Cyclo Harvest primer). I am worried we will be potentially 3 months from end of VTD to STC, and thats if they allow it with the current Covid situation.
update from me, biopsy and paraproteins came back at 0. so the rollercoaster continues as dad hasn’t been on any treatment since nov. kappa light chains and ratio still not at normal level though. plan is still for stem cell transplant hopefully mid feb.
Hi – so pleased your Dad is doing well – it is such a rollercoaster of emotions. My husband’s paraproteins rose from finishing 6 cycles of VTD treatment on the 15th October from 5 to 10 by the 15th November and then to 17 by the 6th December and 20 by the following week when he started the first cycle of DTPace. He completed the second cycle 2 weeks ago and his paraproteins had come down to 7,(but may go lower as he’s still taking thalidomide), but the light chain has really improved and is now in the normal range and he’s due to go in for the transplant on the 14th February. He has coped really well with the last two cycles of chemo and we have everything crossed that all will go well with the transplant now. I’ll keep you updated. Best Wishes Caroline
Hi Sachbarnes, what good news that your father’s paraproteins are no longer evident, and I’m so pleased that both he & Caroline’s husband are back on track towards stem cell transplants this month. I hope they both have straightforward procedures. It’s frightening as we have to be told everything that can go wrong, but most of us only experience a few side effects rather than the whole gammut.
Best wishes for both of them, Jane.
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