[GemmaramParticipant]

Hi all,

I am Gemma and am joining the forum in the hope of sharing my experiences and offering support or comfort wherever I can.

My Dad was diagnosed with Multiple Myeloma in 2006 and last week lost his fight with the illness (he was only 62) I lived with and cared for my Dad during his every single step of the way so feel well placed to offer my support to anybody that is experiencing living in the same bubble that I have been in all this time.

My Dad was treated at the wonderful Christie in Manchester and had 2 Stem Cell Transplants along with numerous clinical trials which included Velcade, Revlimid, Lenalidomide, Bendamustine. During the years he developed Pnumonia, Cellulitis, hypothermia, Pseudomonus so I can answer many questions on so many subjects! Apologies if I have spelt these conditions incorrectly.

Should you have any questions please do not hesitate to ask.

Best wishes,
Gem

[DaiCroParticipant]

Hi Gemma,

I would like to extend a very warm welcome (usually our welcomes are guarded with a 'sorry you have to be here' message. But although your experiences are full and empathetic in nature I still understand that were ultimately achieved through the care and eventual loss of your Dad… but here you are and, as said, you are more than welcome.:-)

I have recently (as of last Monday) started on Rev & Dex having missed out on a trial for Carfilzomib by a matter of a week or so) … I only raised enough Stem Cells for one STC so its been:

CDT – STC – Velcade and now Rev & Dex for me… the SCT failed after 10 months and the Velcade after 6 weeks (but due to the trial qualifiers etcetera the actual remission lasted 5 months in total. So for me the therapies have failed but the good news is that I have responded to all my treatments extremely quickly and extremely well… so Rev & Dex being therapies (rather than chemotherapies) I hope to respond and cope with the treatment to at least its median… we will see.:-D

There are some wonderful people here… a fine mix of patients and carers that, together with others like yourself, (usually active in our newly created 'End Of Life & Grief' section) we have a warm and close group of MM travellers.

Regards:-)

Dai.

[tomParticipant]

Hi Gem

First My condolances for the sad loss of your Dad and next Many thanks for your offer and support for all of us who have or care for those MM sufferers.

Love Tom "Onwards and Upwards" xx

[mhnevillParticipant]

Hi Gemma

Welcome from me too. It is veru generous of you to be willing to share your experiences, and your Dad's, after what have obviously been four difficult years.

One thing I would be interested in is, how was your Dad diagnosed? From all the complications your Dad suffered I presume he was at a late stage when he was diagnosed?

All best wishes to you.

Mavis

[GemmaramParticipant]

Hi there and apologies for my late reply, my Dad's funeral was Tuesday so have been very busy.

Mavis,

You are very welcome and just hope that my Dad's journey can help others.

My Dad was a long distance HGV driver and was a little clumsy one day when he took a tumble from his cab and broke one of his ribs as he fell to the concrete. The rib took a long time to heal but as ribs are tricky to rest they usually do take a while to heal so we thought nothing of it. He then had routine blood and urine tests which presented blood in his urine. when he heard nothing from the GP I pestered him to chase them up. The GP told him that all was fine with the results and we forgot about it until a letter fell through the door from Wigan hospital requesting to see Dad. That was 2006 when he was diagnosed and he was in the early stages so we were very optimistic as it had been caught nice and early.

Dad had around 18 months free from chemo after his first Stem Cell Transplant. His second transplant was a little rougher for him to battle through and was in Christies for around a month as got a little infection. His second transplant gave us just over 6 months free of chemo but his Myeloma seemed to relapse faster and faster. During most trials (and he had tried the lot!) he developed terrible and life threatening infections which his sheer will power and steely determination got him through.

I hope that this helps your query and if you have any other questions please don't hesitate to ask.

Best wishes,
Gem x

[mhnevillParticipant]

Dear Gem

Thank you so much for taking the trou8ble to answer me in such a difficult week. I do hope your Dad's funeral was a fitting clebration of his life.

Love.

Mavis

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