[onlymeParticipant]

Hi to everyone once again.. Sorry for not replying… It's ONLY ME!!!!

Mum started her first phase of getting Hickman line put in.. Then had the high dose chemo..cyclowotsit!!!
But fell poorly she suffered hyponatremic seizure due to levels of sodium dropping… and spent 4 days in intensive care..

Then she struggled with GCSF injections .. Her bone marrow was like glue, rather than jelly like… couldn't get stem cells out.. She Had to have mozibil injections to help with collection…
Finally we managed to collect 2 million cells for transplant… We needed more but grateful for anything!!!

It's been an emotional roller coaster where we've fought throughout it all..

Seeing Prof Russell nottingham, in morning to find out where we are for next phase of having cells put back.. Am keeping my fingers crossed he is happy with what we have collected…

I am finding the whole experience a very humbling one!!!

I have nothing but praise for everyone dealing with this awful disease.. And am wanting to do some fundraising for the charity.. My partner did a sponsor head shave and raised money, now it's my turn to step up to the mark and think of easy Way of raising money…

Lots of love of to you all… Keep strong and keep humor going to fight it!!

Lots of love

only me
Xxxxxxx

[DaiCroParticipant]

Hi Only You,

I had a similar experience to your Mum…

I was given my dose of Cyclophosamide via a cannula in my hand, followed by my course of GCSF injections at the end of November 2009. I finally had my Hickman line inserted (on a Friday, with my harvest due to start on the following Tuesday) but I was back in that same evening with a high temperature and matching infection. The medics spent 3 days (hindered by a skeleton staff over the week-end) searching for the cause of the infection… until my wife noticed my skin swelling up as a doctor administered an anti-biotic through the Hickman line. The line was leaking under the skin and they had to stop using it. I spent five days neutropenic (immune system nil points) before they took the Hickman line out and fitted another in its place during the same procedure… although I was very ill they could not find a doctor free to change my line until Prof. Russell stepped in and insisted… by then I had missed my harvest window and everything was postponed until after Xmas… when they started all over again, including the GCSF injections etc.

I had my stem cells harvested in February, including 5 days on the combine harvester (plus 2 very expensive Plerixafor booster injections courtesy of the Prof) and at the end of the week they too scraped 2 million cells… the minimum for a single shot at a SCT).

I had my SCT 3 weeks later, in March 2010. Ahh… fond memories (not). 🙂 A roller-coaster is an apt description.

I wish your Mum all the very best for her SCT. 🙂

Dai.

[brochoParticipant]

Hi Onlyme sorry your mum had such a rocky start to her treatment , hopefully things will go more smoothly now . I had similiar problems in harvesting enough stemcells for a second harvest My local health authority refused to fund the Plerixafor injections and I was able to produce the bare minimum but enough to do the job . I was told that if there had been slightly less cells they would have grown some more in the lab from the cells they had! All these problems will have been worth it though if your mum gets a very long remission after her sct , my fingers crossed for her Best wishes Bridget

[eveParticipant]

Hi Only me
Funny name to have LOL.:-)
Just to say sorry your mums having a bad time of it,cannot help you,but my best wishers go to you and your mum,Eve

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