[JacquieParticipant]

Hi Vicki Geoff is mid cycle 5 of the RCD Myeloma X1 trial its hard work what with all the emotions ups and downs why me? The clinic now had a special clinic for everyone on trials on Wednesday afternoons so quieter. Sean messed up his last prescription and we had to go back next day to get sorted! We go again 12 December for next results last month his PP was around 10.2. I cant wait to hear those magic works you are not going home with any drugs this time/ All being well we hope Geoff will go to stem cell transplant February or March 2013.

regards

Jacquie

[VickiParticipant]

Hi all,

Whimps we are southern softies, too cold to go for a walk today :-), so we are saving it! Tom, I like the idea of us having an award, V C sounds good enough! Colin definitely deserves it, as I was only the small part player but by gosh that was hard enough! 🙂

Jill, I hope your mum Is continuing to do well on her treatment, at 83 she deserves so quiet life not the bang and crash of a transplant for sure!

Jacquie, I hope Jeffs treatment is going well, it's the same trial and combination that Colin had. All going in the right direction and they do like to keep going until the mm plateaus. In colins case his pp went to zero, and he was left with 750 light chains, because his body just couldn't cope with another cycle!. Best wishes for the next lot of results. I cried when they said colins pp had gone to zero! Good luck with your progress!

Liz, thank you for your good wishes, you are right!, it is so much better being at home and Colin says it does feel great to be at home!,

Andy, you are so right, Colin is behaving so far. I have said I will start cooking to the standard of hospital food if that will keep him at home 🙂 :-). Hope you are feeling ok….roll on those matching donors!

Vicki and Colin xx

[VickiParticipant]

Hi all,

Good news with SCT nurse today! We are told the below results are very good, and his line can come out Monday, they did not have time to do it today;

Haemoglobin up to 12.7 (13 is the lower end of normal)
Platelets, up from 41 to 90 (about half way to normal)
Total White cell count 3.4 (3.6 is lower end of normal)
Neutrophils 1.9 (anything about 1 ok, but apparently normal range is between 1.8 to 7.5)

Sorry to bore with the figures but hey it has been a good day 🙂

Hooray hooray!

Vicki and oh yep Colin to my right who is asleep!

[HelenParticipant]

Hi Vikki
Good results indeed, my neutrophils have hovered round 1.5 since transplant, and WCC around 3. So he's doing ok. It's just slow and steady from here on in. It will almost be boring as recovery is so slow. But we like boring, it means nothing awful is happening!:-)
Love Helen

[tomParticipant]

Hi Vicki and Colin

Thats correct Hooray hooray and a bloomin well done 😀 its been a bit of a haul for you both but you are now on the flat road to remission now 😎 and trust me its the sleep that does it he he.

And thes Numbers :::Haemoglobin up to 12.7 (13 is the lower end of normal)
Platelets, up from 41 to 90 (about half way to normal)
Total White cell count 3.4 (3.6 is lower end of normal)
Neutrophils 1.9 (anything about 1 ok, but apparently normal range is between 1.8 to 7.5)
Never bored me as its great news to read and re read 🙂

Keep it going stay well and stay strong Love to you Both
Tom "Onwards and Upwards" xxx

[mhnevillParticipant]

Hi Vicki and Colin

Somehow I have missed all your batles witht he SCT thus far. Just wanted to sign on and say that I do hope things get steadily better for you and that a really long remission make it very worth while. I have just been reading of one of nine years.

Lots of love to you both.

Mavis x

[DaiCroParticipant]

Hi Vicki & Colin.

Great news… roll on Monday! Colin's bloods are remarkable for this juncture: 😎

[b]Haemoglobin up to 12.7 (13 is the lower end of normal)[/b]

[i]Thanks to my dicky Romany inherited blood 12.4 is the highest I have ever been in my life… even when I was playing County Hockey. Again C: Diff has had my HGB hovering between 8.8 & 8.0 – resulting in 2 lots of blood recently [/i]

[b]Platelets, up from 41 to 90 (about half way to normal)[/b]

[i]My platelets were down to 48 at the height of my C: Diff but they are normally in the 120/160 range.[/i]

[b]Total White cell count 3.4 (3.6 is lower end of normal)[/b]

[i]My white cells have been a bit low (2.6) during the C: Diff reign but usual they stick around 4.4 range.[/i]

[b]Neutrophils 1.9 (anything above 1 Ok, but apparently normal range is between 1.8 to 7.5)[/b]

[i]Again my Nuetro's have been C: Diffed into submission – around 1.6, whereas usually they stick around the 2.8 mark.[/i]

So Colin's bloods are already looking very healthy, which should held him enormously during the early stages of recovery. 😎

Good luck and my best regards to you both 😀

Dai.

[AliParticipant]

Hi you two,

Just wondering how you are doing?:-)

Love Ali x

[VickiParticipant]

Hi all,

Thanks Helen, Mavis and Dai for your good wishes. I'm still on tenterhooks waiting for something untoward to happen. I reckon Ali has a web cam in our living room because she said she had visions of me sticking thermometer in colins ear when he is asleep……not far wrong ther! 🙂

Ali, Colin is still very tired but is capable of doing a little bit. He's eating well and drinking well too. The difficulty is keeping ahold of him when he feels good and not doing too much. Like today for example he has not had much of a sleep, and delivered some thank you letters to neighbours around our cul de sac as they've been so kind to both of us throughout. He does get very tired and still a bit emotional, and also this disbelief that he is at home! The doctors also seem pretty convinced that he has this polymyalgia, which is an inflamation if the muscles. They've given him steroids 🙁 to get this under control, which might be perking up his energy levels, but worrying me about hidden infection!. Anyway as long as the platelets are up he is having his line out tomorrow, so fingers crossed.

I'm back to work on tuesday which is a bit of a worry because I think the mental side of this will take as long to get over as the physical. Though friends and family are around I am nervous about leaving him…..still I must stop my pessimistic side!. Hope you and the family are doing well and mum continues in leaps and bounds!

I guess we'll have to close this thread soon as it's getting longer than war and peace :-).

Vicki and Colin x

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