After spending 5 days in hospital for low platelets and hemogloblin, we saw the oncologist today and have been told my husband has mutated myeloma cells. He just finished treatment with cyclophosphamide, Velcade (bortezomib), and dexamethasone (CyBorD) for over 11 months. Now they are going to start him on Revlimid and dexamethasone along with Darzalex (daratumumab) if they can get it.
We are very disappointed with this news.
I am just wondering how much time he really does have. Any input?
I am so totally scared for him.
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Re: How much time does my husband still have?
We all feel you anxiety but no one here can answer your question. All I can offer is that Darzalex, Revlimid, dex triplet has shown great results in clinical tests. Hopefully it will work for your husband. There are other very good drugs out there as well so if this triplet does not work, others may.
My best thoughts go with you and your husband.
My best thoughts go with you and your husband.
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Ron Harvot - Name: Ron Harvot
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Feb 2009
- Age at diagnosis: 56
Re: How much time does my husband still have?
Did your husband receive an autologous stem cell transplant upon diagnosis, or has he just had chemo treatment? This might be something to consider, or even an allogeneic (donor) stem cell transplant if his genetic test favors this, but it is an individual choice for the treatment best for each person.
Good luck to you both with whatever treatment plan is followed.
Good luck to you both with whatever treatment plan is followed.
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dogmom - Who do you know with myeloma?: husband
- When were you/they diagnosed?: December 2015
- Age at diagnosis: 58
Re: How much time does my husband still have?
Because of his age, they do not stem transplants here in Canada after the age of 70. So he has only been on chemo. First line of treatment was melphalan, prednisone, and thalidomide (MPT). Then went on to cyclophosphamide, Velcade (bortezomib), and dexamethasone (CyBorD), and then just Velcade and dex. Now will start on a new regimen.
Re: How much time does my husband still have?
Beebycarolann, has your husband been seen at all by an oncologist who specializes in myeloma, such as the myeloma specialists at Princess Margaret or London Regional Cancer Centre?
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Little Monkey - Name: Little Monkey
- Who do you know with myeloma?: Father-stage 1 multiple myeloma
- When were you/they diagnosed?: March/April of 2015
Re: How much time does my husband still have?
My husband actually was seen by a myeloma specialist while he was in emergency 2 weeks ago. This specialist did a fellowship at Princess Margaret in Toronto? He was the one that suggested a bone marrow biopsy. We see our regular oncologist who is at the same hospital as this new specialist who will start his clinic in November but also work outs of our hospital. They are in contact with each other and I think he was the one who has pushed to have the Darzalex, etc.
Re: How much time does my husband still have?
I'm sorry you're going through this, but we all are sending prayers and healing vibes your way. Unfortunately, no one knows just how much time he might have. Best wishes.
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countrygirl - Name: Countrygirl
- Who do you know with myeloma?: IgG MGUS
- When were you/they diagnosed?: September 2016
- Age at diagnosis: 35
Re: How much time does my husband still have?
Darzalex (daratumumab) worked awesome for my wife. She takes Darzalex, Pomalyst, and dexamethasone. Pomalyst also works really well for her. Almost believe Pomalyst works more than the Darzalex.
8 posts
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