[KeithH17Participant]

Had blood test today and guess what Hb down from 9.1 to 8.3 And Platelets down to 19 with Nuets at 1.3.
So the upshot is I'm back tomorrow for blood&platelet transfusions with around 5 hours in hospital if you take the crossmatch into account which takes about an hour. This is 5 times in as many weeks. I can't get away on holiday because of my hospital visits unless I take things into my own hands but I don't want to disrupt the great work that the doctors and nurses are doing for me so that's a no no. Nevertheless this has been happening for some time and I'm not convinced that these transfusions are going to help my cause,this is my second platelet transfusion in 3 days. Obviously I don't know the answer but neither do I think the doctors really know? I can't get on with my life also I've had really bad abdominal pain since Sunday which has now eased off so maybe I'll get some sleep tonight at long last. I only hope the treatment is working but I'm not holding my breath on that one,I'll just keep hoping.

[lorraineyParticipant]

Hi Keith,
I'm so sorry you're still having such a rough time, I truly hope these tranfusions help you even if it's a little bit. Sorry you can't get away on holiday, i've everything xd that you will be able to sometime soon. Pleased the abdominal pain has eased off and I hope you manage to get some sleep too. I sincerely hope the treatment's working for you Keith, and remember we're all behind you.
Take care, love & hugs Lorraine xxxx

[wendyduffieldParticipant]

Hi Keith

That's a lot of platelets and transfusions, I do hope the medical team get on top of it and you can get a break from the relentless visits to hospital which is tiring in itself and that you get some sleep tonight. When will you get your next paraproteins results?

Take care

Wendy x

[eveParticipant]

Hi Keith

You must be so disappointed ,but they are prepared to still top you up with bloods and platelets,so that must count for something,When do you see the top man again???
They are trying to give you the best chance of this working,if they are prepared to do it,you have to go with the flow.
Anyway who wants to go on holiday with all this snow,unless you are planning to go skiing Joke honestly .
Give it time Keith,try not to think the worst,you have been here before,so you know the score.Love Eve
Rooting for you.

[tomParticipant]

Hey Keith

I feel for you M8, it must be hard, it wont be long before you think all the hospital visits are Normal, Stick with it Keith am sure they will soon have you sorted out, then you can have that long awaited Break.

Good Luck Keith am crossing everything for you

Tom "Onwards and upwards"

[HelenParticipant]

Dear Keith
You are certainly going through the mill at the moment, I hope things settle down a bit for you, soon
Love Helen

[MothasParticipant]

Keith rooting for you, I hope the transfusions give you what you need.
You've been a fount of wisdom and experience on these boards and always read you with interest.
All the best

Tom

[DaiCroParticipant]

Hi Keith,

You have been here before and you keep on fighting back.

The transfusions are a necessary inconvenience but if they lift you away from having to postpone treatment it will be worth it. It's good to see your Neuts are staying stable, that's one big plus. The medics are doing all they can to get you fit enough to allow the CDT its best chance… and that could work wonders. If they can keep your levels balanced until the CDT takes over then all well and good. Eight Cycles of CDT will have the dual effect of keeping you going and, hopefully, get you to some sort of plateau. 😎

Who knows… Kyprolis (Carfilzomib) might get licensed over here some time this year and that could be a saving grace for many of us in the later stages of MM, It is the first new treatment since Revlimid in 2006 and it looks good. 🙂

All the best for this week… stay positive and stay as healthy as you possibly can. 😎

Keep in touch.

Dai.

[andygParticipant]

Hi Keith

I hope the transfusions on Friday went well and you didn't have to wait too long for the blood to turn up from Newcastle. Hopefully you'll have had a good weekend and your platelets start to climb and the CDT gets to work.
I guess I'll see you again Friday – with a bit of luck it will be only for blood tests for the both of us.
All the best Keith
Andy

[KeithH17Participant]

Thank's for all your kind comments. Yes Andy I do hope it's only for a blood test but I'm in for one of those on Tuesday so the timing would suggest another blood transfusion but it will depend on how the Tuesday test goes.
Wendy my next PP test will be in around a week's time end of my first cycle.Kyprolis what's happening with this one? I've heard the reports are very good and also Pomalidomide has had good reviews but has dropped out of sight although it has already been used in trials. And what's happened with the promise made by this one and the previous government that patients with little or no options would be allowed access to unlicensed drugs?

Thank's again and good health to all.

Keith.

[DizzylizParticipant]

Hi Keith,

I too am keeping fingers crossed hope CDT works well for you.

Take care love liz & kev xx

[ozzyParticipant]

Hi Keith
You really are going through it but I'm sure the docs will sort you out.I tollerated CDT far better and with good results so hoping will do the same for you.
Ozzy

[KeithH17Participant]

This has been the worst week by far since all of this started. Since last Sunday I've been very very ill with little or no energy whatsoever. Spent most of my tine in bed and the rest of the time lying about the house. Today I've just about started to come out of it. My Pllatelets are at 14 and nuets 0.3 so neutropenic again BMB 9.5 which is acceptable.Go for platelet transfusion tomorrow. The Consultant said I need to battle which I agree with but my body is absolutely knackered. Second cycle starts on Tuesday but I just need some respite,an easier time. The weather is getting to me also, I can't get warm. been looking at the Maldives I'd love a month there just to re charge my body. With a such a bad summer I'm feeling very flat I need heat and that would be perfect the other choice is Cape-Verde which is one of my favourite places albeit a good hike and I wouldn't get any insurance but thats not an issue for me. It's just off the coast of Dakar and the weather is the same all the the year round as it's right on the equator what bliss. It's not touristy totally unspoiled and the scenes are breathtaking.Problem is I don't think the doctor would be too happy and I'd be a total fool to go against him but I can always check it out.

Take care all.

Keith.

[DizzylizParticipant]

Hi Keith,

Sorry to hear you've had a bad week kev was actually just like that three weeks ago and I was willing him to fight it ( pnueamonia) but this last week he's been feeling great and so upbeat UNTIL this morning! Crashed down big style it's so frustrating for him, he's gone so weak and the pain has kicked in from the radiotherapy he had couple of weeks ago,
I hope you get some respite from feeling like this Keith and the weather hurries up and turns soon me & kev are counting the weeks down get rid of February and we've only got march 😎 and hey here comes the sun!!
Failing that the Maldives or Cape Verde would do nicely. Hope all goes well at clinic tues: take care!

Keep well love liz & kev xx

[tomParticipant]

Hi Keith and Liz

Am sorry you have had a rough time Am sure I am not on my own wishing you both get a bit of a rest from the pain and tiredness.

Wish you well and hope the sun soon puts a warm glow to us all.

Love you all
Tom Onwards and Upwards xx

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