[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.

[KeithH17Participant]

Yes like everyone else I had and have a husky voice at this very moment. I also have a very bad cough but I'm back on the Dex Sat which will get rid of it. The husk is nothing compared to the cough.

Keith.

[KeithH17Participant]

Hi Andy,good to see you in fine fettle as usual LOL. For 2 guys who supposed to be ill we don't look too bad do we? Nice to see you also Steph. Starting to feel tired now and no steroids for the next 4,days
the comedown starts as of now. Patrick was in later and is starting a new treatment in order to get his marrow activated, all very complicated. Anyway take care Both of you and no doubt I'll see you soon.

Keith.

[KeithH17Participant]

Hi David
I'm not sure your PP figure suggests a relapse before having a BMB first to confirm.
After my first SCT I achieved Zero PP's which stayed that way for nearly 2 years before going up to 5 and then 28 at which point I had a BMB which confirmed a relapse. Your own PP figure is not outlandish and could be a blip either way no Consultant would confirm a relapse on that alone.During my latest relapse my own PP's went from 30-55 all within 2 weeks which proved a relapse without the need for a BMB.

Hang on in there David,maybe things are not as bad as you think.

Keith.

[KeithH17Participant]

Hi Wendy
only just read your posting about relapse. I've relapsed 3 times as you no doubt already know. My treatment started
around 2 months from each relapse although the actual relapse date is difficult to determine. I developed pain in my ribcage and generally felt tired and unwell. I had a blood test and bone marrow biopsy which showed PP's had shot up from 5-30 and MM activity in the marrow was 35% proving the MM was back on the move. My latest relapse
Started with my Hb,Nuets,WBC and platelets being rock bottom (still are) and pp's up from 30-55 all inside 2 wks.
I do hope yours is only a blip,I found that you have a gut feeling about it,I know I did but only the Doc's can really tell you for sure and worrying does nothing to help.

I saw AndyG in the unit on Thursday when I was having transfusions and he wondered if you were still doing the Triathelon.

Take care Wendy and don't worry,it will turn out ok for you I'm sure.

[KeithH17Participant]

Hello Maurine,I found Velcade to be very receptive and so worked very well for me.I did get tired during the day and there was some constipation but that's par for the course with most if not all of these treatments.

I start with CDT Tuesday and hope it does the trick as I haven't many options left.

Hope the Velcade works for you Maureen.

Keith.

[KeithH17Participant]

Hi Sarah Jane,now you don't want figures like mine but here they are for what it's worth.

WBC(2.5)
Hb(7.5)
Plts(14)
Neuts(1.0
PP's(55)

Of course I'm way down the road, 2 SCT's, and 3 relapses inside 12 months but I'm still battling on.
Once your first SCT fails that's when the fun really starts and if you do manage to get a second It's very unlikely to last as long as your first because your bone marrow will be well and truly suppressed and won't recover as well as the first time.

Stay in there fighting.

Keith.

[KeithH17Participant]

Thank's Helen,Wendy and Eve for your support. I did mention Velcade to the Consultant and he did say it could be a possibility but no more than that. CDT and MPT were the more likely options. I got a phone call this morning asking me to come in on Thursday for a blood test just in case I need another transfusion which would be done on Friday. I'll keep you all informed.

Keith.

[KeithH17Participant]

I had my 2nd cycle of Bendamustine Thurs/Fri just before New Year and since then I can't say I am firing on all cylinders. I am having blood tests twice weekly which is killing my Veins I've also had two blood transfusions and two platelet transfusions in the last two weeks. I feel very tired and have had very bad abdominal pain. My Hb and platelet counts are rock bottom and now my Neuts have falling back to 0.8 neutropenic once again. It seems that every time I go back onto treatment my neuts fall back into the danger zone I then pick up another infection and the whole horrid cycle starts all over again. Because of this I can't make any plans as I'm in and out of hospital every single week and as for a holiday……don't even give it a thought. I'm in again tomorrow Monday for a blood test and pending on the result I'll see if I need another transfusion. I feel like the guy in the Eiger Sanction who lives in a dark room permanently connected to a blood transfusion machine LOL. I just want a little respite from all of this and no I'm not feeling sorry for myself just sick of the whole sorry business. I must be coming to a watershed after 5yrs fighting this thing and like everyone else it's the infections that get you and not the MM. The one good thing to say is we have a brilliant nursing team which helps to get me and many others through all of this and are a joy to be around.

Dai how are you doing with the bendamustine and you too Scott?
Hope you are both well.

Happy New Year and good health to all.

Keith.

[KeithH17Participant]

Thank's Tom, You're a real trouper that's for sure.

Take care mate and have a great New Year, just make sure you watch the demon drink lol.

Keith.

[KeithH17Participant]

Thank's to all for your kind replies.

I had my 2nd infusion of Bendamustine today and received the results of my latest Blood test taken yesterday.
Platelets up from 14-31 (no doubt the unit of Platelet concentrate helped) Neuts at 3.6 the highest for 5 months although Hb is still a bit sluggish 8.2 down to 7.7 having Blood Transfusion Monday to try boost it up and will be having further Blood tests twice weekly until Counts become stable.

Good Health for 2013 and beyond to all.

Keith.

[KeithH17Participant]

Hello Helen
always lovely to hear from you.
You say you have been sledgehammered into remission,in my case it feels more like submission lol.
When I went to the hospital there was 3 of our support group all sitting there with heavy colds.
Well it's that time of year but we always seem to get it much worse than the run of the mill punter.
And you are right the MM cells certainly do play havoc with your Bone Marrow.

Have a happy and Healthy New Year Helen.

Keith.

[KeithH17Participant]

Thank's for that Eva and I'll be checking it out tomorrow when I go in for more blood tests.

Best Wishes Eva.

Keith.

[KeithH17Participant]

Hi Michele

It's interesting what you say about the Spleen. During my last but one admission into hospital one of the Doctors after examining me asked if I had an enlarged Spleen and of course I said no as during all the tests I've had this has never been mentioned before but after what you say it's got me thinking. I did ask him why he said that but he didn't elaborate. I will be following this up as I've still got the pain after 5 days.
Thank's again Michele and have a nice Christmas.

Keith.

[KeithH17Participant]

Excellent stuff Andy everything helps in the fight.

Keith.

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