[MothasParticipant]

This morning I go in for my high dose Cyclophosphamide, followed by a week of mobilisation towards collection of stem cells next week.

In reflective mood. More later.

tom

[tomParticipant]

Morning Tom

Well good Luck with it all, I hope you get enough out in one sitting.

Tom Onwards and Upwards.

[AliParticipant]

Hi Tom,

I'm sure all will go well, do you have to stay in hospital?

Love Ali x

[angeParticipant]

Hi Tom

All the best, I hope things run smoothly for you.

Andrea x

[HelenParticipant]

Good luck with this stage Tom, hope you have that sun hat ready for the bald phase!
Love Helen

[tonyfParticipant]

Good luck with the whole process, hope it goes well
Regards Tony F

[jmsmythParticipant]

The very best of Irish luck Tom. Hope all goes well and they get loads and loads of the little fellows 🙂
Love Jean

[MothasParticipant]

@Helen
When I had my cycles of PAD I lost about 50% of my hair due to the Adriamycin. I had the remainder shaved off but I have got a lovely selection of hats to hand 🙂

@Jean,
I'm half irish so that goes well with me 🙂

@Andrea, Tony, Tom
Thanks for your kind words, really appreciated

@Ali
No they do it in an ambulatory care unit at UCLH, the actual Cyclophosphamide infusion took 2 hours, but by the time they'd done blood tests, anti-nausea meds etc. it took most of the morning. I'm home now and feeling ok, but am prepared for side effects to kick in and also of course going 'neutropenic' later in the week.

[PeterJamesParticipant]

Hi Tom
When they harvest your cells , try not to drink too much as you cannot get up plus you have tubes in both arms , my nurse offered to help , but !!
It's totally painless & very boring , take a book
Re hair , four months today since my escape from Christie , then more bald all over than hairy
But today beard grows like mad, quicker I think than pre SCT , hair on head , nose , ears ears , seems to be growing top down if you get my meaning without too much information
I viewed my SCT as the final furlong on the way to a better life & so it has been proved , well at least for the last few weeks !
With luck you will have more cells than enough in one or two session
Peter

[DaiCroParticipant]

Hi Thomas,

I wish you all the best with all procedures and processes up to and including your SCT. I imagine we will all draw a little closer during the SCT itself, ready to offer any advice asked for or perceived as needed. You may also need advice or small prompts with your GCSF injections prior to your Harvest. 🙂

Exciting times ahead, even if they are not perceived as such… 😎

Regards

Dai.

[mhnevillParticipant]

Hi Tom,

Just wanted to wish you a smooth a road as possible and a full remission as a result.

Very best wishes.

Mavis

[MothasParticipant]

Thanks for the advice Peter 🙂

Yes I just about managed a trip to the loo yesterday with the dreaded drip stand with one arm hooked up. Two arms hooked up must be a real challenge.

[MothasParticipant]

@ Mavis, Dai

thanks for the kind words. Had a bit of a dodgy night, I was tolerating it quite well, and then I started feeling quite crappy. Well very crappy to be more accurate. I crawled to bed around 9.30 hoping to sleep it off but no such luck. As part of the treatment I'd been given an anti-nausea drip which came cut with a dose of steroids. These assured no sleep so I could benefit in full from feeling crap all night. The best way of describing it was like having a really, really bad hangover mixed in with hyperactivity.

Cyclophosphamide is derived from mustard gas and boy did it feel like it last night, with no disrespect to the fallen in WW1.

As Tom senior would say 'onwards and upwards'.

t.

[HelenParticipant]

Hi Tom
I'm on my second lot of cyclophosphamide now ( I had it at induction) . Its not supposed to make you feel very sick but im unlucky here. The melphalan for the SCT is also mustard gas derived so you are getting a taste of the next stage now, good idea to make notes on how sickly it makes you and take the anti nausea medicines accordingly. Get lots of rest and as good a diet as possible over the next week.
Love Helen

[MothasParticipant]

Thanks helen, the CNS said expect to feel rough for a couple of days, have a couple of days of feeling ok'ish and then the rest of week neutropenic.

I don't feel so bad this morning but can still not great.

t

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