[DaiCroParticipant]

Hi Anne,

Is your husband on CDT (Cyclophosphamide – Dexamethasone – Thalidomide) or a similar cocktail? CDT seems to be the current frontline of attack. I did well on CDT but the much vaunted SCT was a failure after only 10 months.

I am back on Velcade now (with the dreaded Dex) and will complete my first cycle today (and then a week off – stretched a day by the May Bank Holiday). So far, so good after a blip following infusion no.2 where dex kicked in properly (but a relatively large secondary tumour subsided at the same time which is more likely why I felt awful – the meds were doing their job… and I was blaming poor innocent Dex – bless). 🙂

At 77 your husband will be beyond the stem cell transplant routes but that may not be too bad a thing, I have met quite a few people who respond and get along with this wonderful new generation of drugs that have transformed MM over the past 3 years or so.

They are my hope and they will do for me.

Take care of each other, aim for 80 (I'm 57 and aiming for 60) and take it from there.

Of course we can.

Dai. xxx

[DaiCroParticipant]

Thank you all but it was for and about them, not me (if you see what I mean). I want a group hug and cuddles, I want to take their pain away… but I can't, so at least I can share a drop of humanity and try to tell them that I and we are always here… and when one of us drops away there is always, most unfortunately, a new group of wonderful, frightened, scared, helpless, hopeless people who soon settle into our company and take on the mantle of sharing, caring, tee-shirt wearing advocates and friends.

We are very, so very fortunate to have this board… and meeting Ellen and her staff at the Nottingham INFOday was a true pleasure and an inspiration. Thank you Myeloma UK. 😉 😎 🙂

Dai.

[DaiCroParticipant]

Thanks Mari – I blame it on the dex – two lyrics, progress on my synopsis and I've tried to flog my publishing company to my sister >:-(

Busy, busy buzz.

Dai.

[DaiCroParticipant]

Thanks all, it gives me hope that velcade might be a working option that's for sure.

I naw aboot t'warm – Cushie Butterfield tawd me.

She's a big lass and a bonnie Lass she likes her beer
They call her Cushie Butterfield and I wish she war here. 🙂

Dai. – singing softly.

[DaiCroParticipant]

😎 😀 🙂

[DaiCroParticipant]

I have only had 3 infusions so far Gill (3rd yesterday – Thurs) and I have not had to take a single Movicol yet…. unheard of, I sniff them for a high when I've nothing better to do… I'm not in Stephen's league but I'm… chilled… laid back… incredibly loose.

Dai.

[DaiCroParticipant]

Don't listen to that guff from Gill Sally – she is a rock… immovable, enduring and wonderful. Gill and others on this board have maintained and sustained me from a distance more than they will ever know.

Dai.

[DaiCroParticipant]

Hi Ali,

Welcome, I am glad that you have found us. This is a wonderful site and we sit in our corner of it and try to support, succour, inform, befriend and.. well, just be for the most part.

You will find a great mix of people on/in different stages of the Myeloma 'journey', a good number are carer's like yourself, willing to share experiences of and with the disease as well as the effects on domestic and relationship life… its all here and we try our best.

I wish you and Guy well as you adjust to this new way of life… stay positive is my advice… banish negativity in all its forms and whoever brings it to your door. Delve into the sections – carer's Under 50's etc (even I peek in there for a quiet look/listen when no one's about and I'm… 57 – I had to check there:-D ).

Some weaken with the morning's reality, some with the evening's lull, some as the ********** dex keeps them w i d e a w a k e, ************** dex. Ahem, as we were. 🙂

Although it may seem that your world has stopped revolving, or that you walk upon it in a strange kilter, it won't be long before you start finding answers, questions, resolutions, more questions, better answers and then a way forward that will seem abnormally normal.

And we will walk with you.

Dai.

[DaiCroParticipant]

Don't worry, not quite yet. 😎 😀 🙂

Dai. xxxx

[DaiCroParticipant]

Dear Susan,

Like David, my memory of Kevin is one of grateful acknowledgement for his help, advice and willingness to share. He was definitely 'one of the good guys' and for you so, so much more. God bless you and I hope that you have much love wrapped around you at this time.

Dai.

[DaiCroParticipant]

Ah Tina my love, I am so, so sorry that you have lost your Patrick. My thoughts and love and sense of loss are with you.

Much love,

Dai. xxx

[DaiCroParticipant]

Hi Tracey 🙂

Sharpy is fine, Tracey is better. 😀 😎

Dai.

[DaiCroParticipant]

Hi Mari,

Well I'm following Stephen and Keith, so please tag along. 😀

We keep on getting rain warnings and deep blue graphics on the weather charts but little actual wet stuff. Janet's going out into the garden with the hose pipe and tools tomorrow. 🙂

Dai.

[DaiCroParticipant]

That is good to hear Angelina… I hope John's next treatment works just as well

I recently met a woman at the Nottingham infoday who had responded well to treatments but not to the SCT. I believe she managed 18 months after Velcade and five or near six years on Revlimid and still going strong. There's hope for us all. 😀

Dai.

[DaiCroParticipant]

Hi Sharpy,

I started my CDT treatment in July 09 in a bad way with kappa light chains at 3,500 -they came down to 'negligible' after 2 cycles, complete remission after 3 and remained so after the 4th 'to be sure' cycle.

My consultant was adamant that I should press straight on to my SCT but I was not so sure because it took two attempts, including a scary week neutropenic with a temp off the scale because of an infection picked up from my Hickman Line (which had only been put in that day) before they managed to scrape 2.1 million stem cells, giving me one shot.

I felt so, so well that I asked for the SCT to be postponed until the first signs of relapse but was told that the SCT was the only real way forward. I had my SCT 3 moths later (after the second attempt at harvesting) and I was told to expect a decent remission based on my CDT recovery and my SCT
uptake in 10 days. My SCT lasted 10 months and as so has been considered a failure.
I am now on my 1st cycle of Velcade (2nd infusion today) but if I could go back I would rather have followed the CDT remission to its end before going for the SCT.

I am sure the consultants know what they are about but I am getting so frustrated that such an individual disease is dictated by finances and treatments laid down by NICE that I have to question our true input into our disease.

Dai.

[Author]

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