[CarolsymonsParticipant]

Hi Jean

Still suffering through the side effects but they are manageable. Oesophagus slightly less painful today and I managed to eat ice cream his morning…first solids for 3 days! Seem to have conquered the diarrhoea finally with loperamide and dry retching is minimal. I have had 16 hours of saline IV and the threat of the antibiotic tsunami is still hovering over my head! Temp 37.8 this morning …they will act when it hits 38! Too close for comfort!

Carol

[dickbParticipant]

Hi Tom, looked at your bloods, now in my amateur status the HB is heamoglobin – red blood cell count. PLTS is platelets, they have to be in a certain range to ensure your blood is not too thin – doesn’t congeal or too thick – can’t be pumped round by the heart. The important one is the Neuts – white blood cells I believe average is about 4, below two and your in dangerous territory – no immunity, range goes up to 10 or 11. I believe when it’s that high then it’s Leukemia – don’t quote me, I’m not a medic.

Richard

[mhnevillParticipant]

Hi Tom

At last I have been able to get on line to the Discussion Group so am catching up. Good luck with the treatment. Hope you get into remission real quick. My question is, if you do, why do you need another SCT now, why can’t you just go with the remission for however long?

Lots of love.

Mavis x

[tomParticipant]

Hi all

Well I gave had two lots of Velcade and two lots of steroids and doing well at the moment.
Just had the sleepless nites with the Dex then the fatigue at the end of the week so it’s all good.

Carol looks like your doing well with it good on you,

Mavis yes on for another SCT at the end of this treatment it’s what I said I would do to be fair yes am sure I could stay on drugs for some time but the last SCT fave me four years drug free and that was good so will try for same if not longer this time.

You all stay well and fit

Love Tom onwards and upwards x

[judyjamesParticipant]

Hi Tom

Have you considered taking the steroids in the morning instead of at night. I found I slept okay doing this.

Judy

[DizzylizParticipant]

Hi Tom,

Those dex days! Kev takes his early morning but he still gets his wide awake night, although they reduced his from 40mg to 20mg the only difference he’s noticed is his down days happen quicker which he’s not happy about but there not so powerful (if you get what I mean) but he gets a couple of good days and we try and live a normal life as we can and things seem a little more settled!
Are you still able to carry on working Tom? Or has the treatment stopped you?

Take care love liz & kev xx

[tomParticipant]

Hi Judy
Yes I do take them in morning about 5am but it still makes me lose a few days sleep to be fair and am sure I catch up on a Thursday lol

Liz and Kev

Yes I am still clocking on so far will continue until I just cant do it any-more ?

Have a great week end you all

Love Tom Onwards and upwards xxx

[bandityogaParticipant]

Hi Tom

Ian’s BMB showed 20% plasma cells but all bloods and kidney function normal. Got at least 1 months reprieve before he starts treatment again.

Start counting sheep when you’re drinking the vodka. lol

Wine for us tonight.

Onwards and upwards.

Maureen

[tomParticipant]

Hi Maureen and Ian

Pleased bloods are good it’s a step in the right direction, I hope it’s a nice bottle of red you are having

[tomParticipant]

Now half my post is missing ???????

[bandityogaParticipant]

Hi Tom

It was a good bottle of red.

Hope you aren’t having too many side effects from the drugs.

Maureen x

[tomParticipant]

Hi Maureen and Ian

Yes a good bottle of red should be on NHS Scrips lol,and I aint got any side effects to speak of cept the Dex and sleep (lack off) so am going to have my week three of Velcade in Morning plus me ten iccle Dex Mates lol, so nearly just over half way on my first four week cycle and doing good

Enjoy whats left of the week end its a great sunny day here in :Sunny Scunny:

Love to you Both

Tom Onwards and Upwards xx
ps i have copied this post in case it misses some lol xx

[tomParticipant]

Hi every one
I am now on second cycle and just done third week of that cycle and kast week I lost sleep on Monday as normal but after that I could sleep for England ? Fall asleep on sofa wake up and go to bed it was wayyy too easy to sleep, so let’s see how this week falls.
Went to Scunthorpe General today and talked for a few seconds to a couple going in with
Dr Jalihal who wanted to talk to me but never seen them in day room so asked reception to pass on my phone number, hope they get in touch, lady said she noticed me from the group so they will be in and hope they read this.

Love to you all and stay well

Tom Obwards and upwards xxx

[bandityogaParticipant]

Hi Tom

Glad to see you are doing well. Must be awful not able to sleep.

Ian is going for preassesment tomorrow. Consultant wants to start him on velcade on velcade24 March even though his light chains stayed steady. They don’t want to take any chances because of his past record. We have booked a break away at the Lake District for a couple of days before he starts treatment.

Onwards and upwards

Maureen x

[tomParticipant]

Hi Maureen

Thanks for that, yes I am doing pretty good on it the sleep I think has come back to me and near next to normal pattern so that’s good.
Am sure Ian will cope with the Velcade and it’s good to get away before treatment starts pewee went away before I started treatment all booked I a weekend lol.

Good luck to you two and enjoy your break.

Love Tom onwards and upwards xx

[Author]

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