[reedhammanParticipant]

Four years ago I was diagnosed with Myeloma. My spine collapsed and I lost a few inched in height, which left me in pretty bad pain and I had to sleep in a special chair for about six weeks. Could not get into bed. Could hardly eat, I was thin as a rake.

There is really no light at the end of the tunnel, my body will never be right again but things can get better. Pain is now manageable and I have regained the weight that I had earlier lost. I am 69, I have given up all physical work but life is not too bad and I think I will go on for some time yet.

Regards John

[reedhammanParticipant]

Hello

I had collapsed vertebra which has caused me to to lose about two inches in height. I am rather bent over and do not look very nice on the beach.

My back is somewhat painful but not as bad as it was. The bone doctor said an operation could improve my back but that it would be better just to cope with it as it is. At my age I do not like the idea of an operation.

John

[reedhammanParticipant]

You can ask your GP to refer you to another doctor for a second opinion if you think that your present consultant is missing some treatment choices for your husband.

I am taking my third batch of treatment options now and I am doing quite well. When this fails, as it surely will some day, I will be faced with a choice of more intense treatment with limited returns or make do with palliative care and just fade away.

It is personal choice. There will come a time when I will say “no more treatment.”

John

[reedhammanParticipant]

I take rivaroxaban pills each day to thin the blood.

No need for injections.

John

[reedhammanParticipant]

After treatment my paraprotein went down to 2. That was very good and then after about 6 months of remission it slowly climbed to 15 and it was then decided that it is best to re-start treatment. So my paraprotein is now down to 9. I am taking lenalidomide with dexamethazone, hardly any side effects.

I think that the doctor thought that anything less than 15 would not effect my health. You can still consider your hubby in remission and hope it will last a long time yet.

John

[reedhammanParticipant]

I decided against SCT two years ago because I was feeling very weak with side effects of Velcade. I then went on to Cyclophosphamide and Dexamethazone which held me for a while and now I am taking Revlimid with Dexamethazone.

It is just maintenance but has brought my paraproteins down from 14 to 9 over the last 5 months. No serious side effects.

I am taking one pill per day for three weeks then one week rest.

John

[reedhammanParticipant]

Thanks for these comments. I will need to make a decision by next week.

John

[reedhammanParticipant]

I am aged 66, older than is ideal but the doc thinks I am pretty fit. I still feel rather sickly from the velcade treatment that has just ended.

I don’t want to go on forever feeling sick.

Most people here seem to have had on balance a positive experience of a transplant. Anyway it is quite nice having nurses fussing and looking after me, bringing me cups of tea and stuff.

John

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