Hi fussy,

I've got myeloma. Diagnosed in October 2016, initial treatment was CTD, (Cyclophosphamide, Thalidomide and Dexamethasone) and I achieved a complete response (CR). This was followed by 10 sessions of radiotherapy to a plasmacytoma in my left iliac bone. There's more but that's enough about me for now.

Has somebody told you that your husband is terminal or have you just associated stage 3 with terminal?

Because as far as I'm aware the stages in myeloma are to do with disease burden and blood results/scans etc on diagnosis and stage 3 doesn't pertain to 'end stage' in myeloma. It doesn't have the connotations in myeloma that it does in other cancers. It may mean a poorer prognosis statistically but doesn't say much for the individual.

I didn't have a transplant, didn't think I could handle it (I became very ill, very quickly) but I understand it can take up to a year or more to recover from one.

My only advice would be to be 'sufficient to the moment'. That's all you need to be.

Try not to ponder on the future, it's unknowable and the worrying can make you ill. Just address what's in front of you now, at this moment. The next moment will be along soon enough, deal with it when it arrives. Be sufficient to the moment.

Remember that for the most part, you've got the worst part. The feeling of helplessness, knowing that you can't make him better. It's often easier for those of us with the cancer than for those who care for us. And it's difficult to be both wife/husband/partner and carer.

Live, for whatever time is left. Whether it's 10 days or 10 years or more. Concentrate on living and not on dying.

Practically, stay as clear of infection as possible. It matters.

That's about all I can say at the moment, given what little information you've posted. But I'm here to help in any way I can, usually within a couple of hours. I saw your post last night but I was already falling asleep and unable to answer at the time.

It'd help if you provided a bit more info, sort of describe your husband's journey so far, sort of thing.

Don't forget to smile and laugh when the opportunity arises. And wear sunscreen, obviously.

Best Regards

Taff

Hi Taff

My husband has the genetic mutations on his cancer cells P53, i think there are 4 mutations and he has 2 of them. He was on Velcade, lenamilalide and dexamethasone combo, a blast of chemo and stem cell harvest and spent 4 weeks in isolation in the hospital where they gave him a very high dose of chemo and half his stem cells back then next day, he was very sick. They have said his proteins are down to zero atm and they would do the transplant again if they started to climb again. He is back on the Velcade and lenamilalide to help keep the beast in the cage so to speak. They said when the proteins come back it will be aggressive more than before and gave him an estimated 43 months from diagnosis. Some days he can't put one foot in front of the other, he says himself he feels done and to add to that the cluster headaches are holding him back too. 

Stef