[barbhParticipant]

Hi Lolly,

I am new to this forum too. I am also a carer. Information is definitely the key and make sure you ask if you are not sure about something. Husband diagnosed 3 years ago. He had 6 month CDT, then SCT in July 2011 The hardest part he found with the SCT was the isolation but fortunately no severe side effects and was back in work 5 months later.

Unfortunately it is now back and he has just started on Velcade, however as Eve said you can't compare people as Tom is still in remission nearly 4 years later.

All the very best to you both & welcome to the site

Barbara

[barbhParticipant]

Steve started on Velcade yesterday. 2 cycles scheduled before reviewing whether to move on to 2nd SCT. Although his PP was only 10 on last test they are concerned that the neck & shoulder pain indicates that the myeloma is active again. (It was only 25 when he was diagnosed & had a duck egg size tumour & the extensive bone damage) BMB & bloods done on wednesday.

Disappointed at less than 2 years remission but we are OK & staying positive. At least now we have a treatment plan.

[barbhParticipant]

Hi Carol, my husband also had to start on Thyroxine about 6 months post SCT

Best wishes Barbara

[barbhParticipant]

Thanks. We should find out later this week if further treatment is proposed. They are concerned though about tumour formation due to how quickly the previous 1 formed & the size of it and also the fact that he has been off zometa for 10 months now. By the time MM was diagnosed the consultant was surprised that he was still walking due to how big the tumour was.

Dick I know what you mean about how we all react differently. Reading through our journey so far I honestly don't know how we have got through it as well as we have. The only other time I fell apart was just after his 2nd op to stabilise the neck. However this was mainly due to another family matter involving our then 19 year old away at uni. I was so torn between wanting to offer my support to him but knew Steve needed me more.

Thank you both for your support and best wishes to you & your families.

[barbhParticipant]

Thanks Etta. I know my husband has the same feelings as you as he has always been the strong 1. Luckily I am self employed working from home so have been able work around his appointments etc. Not sure if I would have been able to handle any other sort of work. A good cry out of sheer frusrtation at the Drs on Friday has helped a lot.

Apart from the pain & tiredness he is still able to do everything for himself so it is mainly emotional strain for us both at the moment.

Once again thank you and I wish you all the best for your journey against MM.

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