[andygParticipant]

Hi All,

Seems I’ve been neglecting the forum for sometime. It must of been because I was on half dose Dex whilst recovering from my pneumonia incident. Anyway I’m back on my 40mg dose now so sleep will be a problem again, I usually come on here on my sleepless nights, so I should become more regular again.

Anyway I’m halfway through cycle 28 of my Pomalidomide and Dex regime and my PPs seemed to have plateaued at around the 14 mark which a bit higher than before I had pneumonia.

We’ve had our first break away since last June, four nights in the Lake District so hopefully our usual trips will begin again Kefalonia, Ostend etc.

Hope everyone is doing okay though I do know with the nature of myeloma some will be struggling.

Every day is a gift.

Andy xx

[janwParticipant]

Hi Andy,

It’s good to hear that you are OK and managing with your current drug regime. Long may the drugs continue to work for you. I’ve missed reading your updates. Every time I caught a cold virus and also with the shingles virus, my light chains would rise by around 300, but after recovering from the virus the light chains would never drop to their previous levels. Therefore, I’m not surprised after all you went through with pneumonia that your myeloma levels have gone up a little. Hopefully they will plateau at this level for sometime, or even reduce a little. I’m also on a sleepless night with Dex, but have just finished my sixth cycle of VCD. I now have to wait to see whether my light chains have reduced further before I can proceed onto the second sct preparation.

Jan X

[cygnetParticipant]

Hi Andy

Good to see you on here again – & even better to hear your are off on your travels again!
Have a great time!
C x

[dickbParticipant]

Nice to hear you’re still around and making the most of things. Shame about the 40mg dose, hopefully one day they may be able to reduce it. At least with the sleepless nights we know we will hear from you as that’s when you tend to post.

Richard

[andygParticipant]

Hiya all,

Well here I am as promised posting on my Dex induced sleep deprived night! Though I maybe jumping the gun a bit as it’s not even midnight yet.

Anyway a little update – Last week I was feeling a little under the weather Hmmm more under the weather than normal I guess I should say. Anyway I had a cold and a cough but that’s no big deal though at the back of my mind of course my recent run in with pneumonia was nagging away. I got up Friday took my temperature as normal 38.2! So I rang the day unit explained my problems and warned them I’d be there in 30 minutes.

When I got there my Stats where taken and confirmed my high temperature. A cannula was inserted and lots of bloods were taken and a urine sample given. My consultant checked me over and thankfully said my chest was clear. We discussed the options and the one with me not being admitted but going home with a big bag of antibiotics for me to self administer and for me to check all my stats at least four times a day with the promise I’d ring in if anything untoward showed up. My consultant didn’t want to admit me due to what happened last I was admitted – pneumonia. Next I was hooked up to a saline infusion, for three hours, and had my first course of antibiotics. Saturday night before bed and I checked my temperature as usual and was still the wrong side of 38 and we were starting to get a bit, a lot, worried and resolved to call in if Sunday morning brought no improvement. Sunday I took my twice! because I didn’t believe it the first time my temperature had returned to normal phew!

Went to the day unit on Monday to give up some more blood and was told nothing was showing up yet from previous tests. Got a phone call Tuesday to tell I had UTI and that they were checking with microbiology to see if the antibiotics I was on were appropriate. If I didn’t hear back they were. I didn’t hear anything.

Last weekend I was supposed to sort out our trips to Kefalonia and Ostend but I had other things on my mind so that’s this weekends job now – fingers crossed. Had my first beer or two tonight so I guess I’ll class myself as recovered I’ll find out next Tuesday officially.

Well that’s it for now folks a Dex inspired ramble about my past week another shortish post lol.

Every day is a gift.

Andy xx

[annlynnParticipant]

hy all..just whant to pick some brains. my blood count has usually been on the low side as is iron but came vback from holiday last night still got tge remnants of a cold but hospital bloods even lower today. so transfusion tommorow ive never had one and sure itll be fine feel breathless and totally rubish ha ha though. im sure the transfusion will help. anybody been in same boat ???? annlynn

[rebeccaRParticipant]

Hi, I had a short spate of low HB and going for some blood – you will absolutely love it I felt like Popeye straight after it feeling normal and energised. I have to say on occasions I used to phone up saying how lack of energy etc I felt and asking for my bloods done so I could have a pint – to me it was highly addictive but they were very scant in their rations to me. There was no explanation why my HB had gone low for a while and then it just went up and haven’t had a pint for a very long time so guess it might just be one of those unexplained blips. Enjoy your pint, trust me you’ll love the after glow!

[annlynnParticipant]

when put like that rebecca im looking forward to it i might end up having a busy productive weekend. havent had one of them in a while haha bring it on. xx thanks so much

[annlynnParticipant]

well you were right rebecca. i had two bags given over five hours but feel great it has given me a much needed boost it should be given to everyone haha xx annlynn

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