[HelenParticipant]

Hi Trish
All conflicting info, I suggest you ask your consultant as there are probably different local rules.

I'm told that if you have auto SCT, the cells put back include lots of our other white cells including antibodies from previous vaccinations, which still carry the blueprint of our previous immunity, therefore there is no need to revaccinate except for things as they expire, ie tetanus and flu. The theory being that if you are exposed to something like measles or hepatitis B, there are still enough antibody cells that will recognise the relevant bugs (antigens) and duplicate as needed. Our immune systems are a bit tardy though so we tend to get well infected before our antibodies work properly, and often need additional antibiotic support. The shingles virus is a slightly different kettle of fish in where it is stored after chicken pox, which is why we are on antivirals after transplant.

I work in the NHS, and they have not so far insisted on any revaccination.
Let us know what happens, it is only by our raising the questions sometimes that national changes and answers are found.
Love Helen

[HelenParticipant]

Hi Andy
Hope all goes well later today, and yep getting shot of the catheter is a very sound goal, not comfortable. Do you have sensory loss too with your back?

I had Revlimid, cyclophos and dex as my induction therapy, I made sure I took anti sickness tablets an hour before the cyclophos and then regularly for 48 – 72 hours after, i rested a lot and drank lots of water, that seemed to stop the bulk of the cyclophos side effects.
Just keep swimming:-)
Love Helen

[HelenParticipant]

Hi Alison
Shame about the flying for your mum but she' ll be pleased to get anywhere, I know I was!
Work is ok, I'm working my way through thousands of emails and planning my retraining, that should take til about September, what with the gradual return and all. I'm shockingly tired as expected. But the diversion from being at home is good, and everyone I work with are very kind.

I was at the clinic again today, all bloods really good, in fact my haemoglobin was 15.4, and my neutrophils were 2.4 the highest any of them have been for 4 years, so back on the revlimid after my 3 week break, they think all my tummy problems are aggravated by it, so I'm on a watch and see how it goes and then might have to go onto a reduced dose if it all flares up again.

And Paul if you are reading this, how was your holiday in Alnmouth, one of my favourite haunts, wasn't the best weather you could have had was it? But such a pretty place.
Love Helen

[HelenParticipant]

Lovely videos Tom 🙂

[HelenParticipant]

Hi Dai
Well yes, only cast iron numbers and in large numbers is medical research measured, but as Keith says and as a nursing observation, better health and the positivity that goes with it often gives better outcomes, for complex reasons. But Dai your numbers are fluctuating in the same plane, not rising, so I'll keep my fingers crossed that this is a good thing:-)
Love Helen

[HelenParticipant]

Hi Ali
What a relief, it took me 4 hours on first day then 2 hours on second day so your mum did well to do it all at once. Another hurdle out of the way, now have a really good few weeks of rest, holiday and put lots of weight on, ( mum, not you 🙂 ) so she has good reserves for transplant, no need to eat much afterwards means you can concentrate on all the drinking you have to do when you don't feel so good. Not long to go now.
Love Helen

[HelenParticipant]

Hi Mari
Can't help on the Plerixafor, I had double doses of Granocyte, which made me feel shocking but yielded the results. Hope it works though and you get good news tomorrow.
Love Helen

[HelenParticipant]

Hang on in there Keith, hope it keeps doing the trick.
Love Helen

[HelenParticipant]

Hey good luck Tom let us know how it goes
Love Helen

[HelenParticipant]

Whoa that's clever, Tom, I confess to being a complete idiot when it comes to IT, In fact I don't really know what you are talking about:-P I spent today trying to remember how to use a PC having used an iPad for the last year.!!
Love Helen

[HelenParticipant]

Hi Keith
Sorry to hear about the continued gut troubles, it really is a pain in the 'wotsit', I have got used to it now and having had a break for two weeks, I know it is a problem that I've got used to now, after 8 cycles.
Anyway, the steroids, get on the blower to the consultant in the morning, I'm with Dai here check out that dose with the organ grinder, just to be sure.
Hope you settle down soon, it's so horrible when you feel like this.
Love Helen

[HelenParticipant]

How did you do that Tom,? Thqnk you And that was an early pint!
Love Helen

[HelenParticipant]

Dear Dai
Hmm yes I read the email replies and was about to respond, but I too can only see them idividually, anyway, thanks for your very amusing reply;-) I'll hunt out the whoopee cushion, nice new photo by the way.
Vicki, Teresa, Tom, Ali, Jean and Eve, thanks for your kind words, I hope tomorrow is as straightforward!
I've only booked the holiday dates so far, not the destinations yet, I'll save that for my next day off!
Love Helen

[HelenParticipant]

Ta Da
🙂
I made it, back to work, tidied my desk, sharpened the pencils, had a coffee, told HR I was back, dished out the ink, rang ESA to say I was back to work, booked a holiday, met a few new people, got given a car parking space…. 😉
……. Then got sent home again!
I'm totally, completely and utterly whacked now, …..with a capital F!:-P. ok Tom ….the only way is up now
Love Helen

[HelenParticipant]

Hi Tina
I was on revlimid, dex and cyclophos and took 4 – 5 weeks after it finished for all the effects to wear off, but I was pretty well back to normal then with much better energy levels even than I have now. They never wore off while I was on it. I'm on revlimid now, only as maintenance and some have come back again:-( Hope you are soon chirpy again, must be doing something right if you are up for going away in the motor home, keep it up:-)
Love Helen

[Author]

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