[mrsmac79Participant]

Hi all,

Not really sure where to start, just looking for information from people in the same stages I guess.

My husband was diagnosed in May 2012 (age 47) and started on the thalidomide combination trial immediately along with radiotherapy on his spine ,pelvis & arm. We were originally told that he would need approx 6 months of chemotherapy and would then be in a position for a stem cell transplant.

Unfortunately his myeloma has been very aggressive and after initial good results this combination was unsuccessful , velcade was totally ineffective so he was started on revlamid. It took 2 years to get him to transplant , in this time he’d had numerous infections and hospital stays and 2 serious bouts of pneumonia. The transplant was not considered successful and he was back on high dose revlamid within 3 months.

Since Christmas just gone his deteriation has been rapid, he spent time in intensive care February with pneumonia and Pluracy, and his weight has dropped to under 9 stone. He is currently having to have blood and platelet transfusions weekly. His consultant started a new trial last month but had to stop half way through even though it was the lowest dose possible as his body just doesn’t seem to be coping.

The stage were at now is where he just wants to sleep and his body rejects any food or drink even the fortisip juices, after meeting with his consultant today we are no more sure of what’s going on he admitted he doesn’t know where to go from here he’s just hoping to get him well enough for another go at chemo

Has anyone been at this stage and made a good recovery ? My husband looks so frail and has said numerous times he’s not sure he can take much more as he’s in constant pain even with the morphine and effentora. I try and reassure him that it’s a blip but his overall condition is very worrying.

Sorry I’ve been very long winded I’m just hoping some of you guys might have been in the same stage and got through it.

[andygParticipant]

Hi Mrsmac.

Sorry to read what your husband is going through it’s unfortunate his SCT didn’t work. I had a similar start to my treatment nothing seemed to work for me and I ended up on Revilimid, Cyclophosphamide and Dexamethasone for 22 cycles which held my myeloma in check. All the time I was on it my blood tests all came back low and I was neutropenic nearly all the time. Due the myeloma and the drugs taking out the some good guys whilst hitting the myeloma.

The way I see it is your husbands bone marrow has taken such a battering that it’s struggling to do it’s job. Time and maybe some helpful drugs are needed for his bone marrow to recover but time is dependent on the activity of the myeloma. My bone marrow recovered after Revilimid but we all react differently. It’s a balancing act the doctors have to find.

I can’t make a comment about his stage and if anyone has made a good recovery from it because I’ve not come across a similar situation. Everyones journey is different. Are his blood results stable?

I always say that you carers have the worst part of this myeloma journey having to watch and worry. At least we know how we feel and how much it’s affecting us.

I hope you both have some good news very soon.

Every day is a gift.

Andy xx

 

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