[MariParticipant]

Steve went into Kings for his stem cell harvest today but at 11.00 I had a very disappointed phone call from him. They had taken blood at 8.30 when he arrived and found that the level of stem cells in his blood was too low, so the harvest could not go ahead.

After a discussion with his doctor it was agreed that he would have yet a further doubling of the GCSF injection, plus a dose of plerixafor. He duly had this at 5.00 pm and will return tomorrow at 8.30 am to have his blood checked again. Before he leaves home we will give him another dose of GCSF and hopefully the harvest process will start tomorrow.

I know the use of plerixafor is contraversial and we are very lucky to be getting it. Has anyone else had it? How did it work for you? Steve was especially disappointed because he was initially told that he might not be able to fly at the weekend because of a risk of bleeding, however he was later told he should be fine to fly and our holiday is not going to be cancelled, phew, we both really need that holiday!

Cross all your fingers and toes for him for tomorrow so that he gets a good harvest,

Love Mari xx

[jmsmythParticipant]

Mari

I'm so sorry to hear that Steve is having a hard time stem cell collection. I'm still new to this treatment (frank hopes to have SCT after his cycles of CDT are over) and no nothing about plerixaforbut I will keep everything crossed for him for tomorrow and pray that all goes well. Enjoy your holiday.

Love Jean x

[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

[DaiCroParticipant]

Hi Mari,

My initial harvest was cancelled when my Hickman Line leaked, giving me an infection, a week of being neutropenic and finally a replacement line… by which time all of the prep for my harvest, including my CSF injections and the chemoblast were null and void because I had 'missed the window'.

That was 3 weeks before Xmas… so they waited until after the holiday and started again (thankfully no more chemo) but there were a few delays on their(the hospital) part due to harvest machine availability, so it was mid-February before my harvest.

Day one was very disappointing… so they gave me an extra double-dose of GCSF but the next day proved almost as disappointing… so the Prof ordered up a dose of Plerixafor, which I came back to the hospital a 11pm to receive. Wednesday was a little better but still poor (about 400,000 in total so the Prof ordered another dose of Plerixafor for Wednesday night).

After 5 days on the harvester, + 2 doses of Plerixafor, I finally managed to squeeze out 2.1 million Stem Cells… enough for a single SCT (the Prof said he would have run with 1.8m). So don't despair yet.

The Plerixafor worked for me… encouraging all my Stem Cells to stop sticking to the sides and to throw themselves into the mainstream.

I hope that this powerfully expensive but powerfully good agent works for Steve as it did for me.

Dai.

[MariParticipant]

Thank you Dai,

It is good to know that it worked for you. I know it is terribly expensive and it seems they are prepared to give Steve possibly three doses, today, tomorrow and Wednesday. They have said that they fully expect to need three days to be able to harvest enough cells. It took quite a bit of doing to get enough stem cells the first time around, he likes to hang onto his stem cells! I just hope the plerixafor can encourage those little monkeys to stop sticking to the sides as you say,

Thank you for the encouragement,

Love Mari xx

[AliParticipant]

Hey Mari

My fingers and toes are crossed for today, surely the extra gcsf and the plerixafor will do the trick. The nurses mentioned plerixafor to us last week and they were very confident it does the job very well. Like you say its just very expensive and they probably use it as plan B.

Im pleased you are able to still go on your jollies – a well earned rest is needed after this.

Please keep us informed

love Ali x

[DaiCroParticipant]

Hi Mari & Ali,

Plerixafor is very expensive (not sure now but I was told once and if I recall correctly more expensive than gold).:-D

The harvest machine does a series of cycles and then stops to store what it has collected… so the more days on the machine, the more bags you have. Each bag contains your collected stem cells plus a preservative… they are then ether prepared for return or frozen for later use… a lot of this work is done back in the laboratory.8-)

As far as I know I genuinely hold the world's record for the amount of bags returned. Due to my 5 full days on the machine, plus the plerixafor, my collection of 2.1 million stem cells were returned to me via 14 bags. I was told that the previous record for Nottingham up to that point was 8 bags, which one nursing sister told me was a record they thought would never be beaten… then I came along.;-) 😀

Tell Stephen to gird his loins (is that the same as hitching up your trousers?) and take the 3 days… whatever it takes… it will be worth it.:-)

Dai.

[Mick66Participant]

Mozobil is £5000 a shot but worth every penny because it really does work. Good luck.

[anndrysdParticipant]

Plerixafor worked for me 3 years ago. I had 3 doses I think and that gave me enough for a second SCT which gave me another 15 months or so. I didn't like the night panics I developed on two nights though…

[MariParticipant]

Hello folks,

Yes indeed the plerixafor is £5000 a shot. Steve said his nurse was scared to spill a drop as she gave it to him last night. It seems to have done the trick. The stem cell level in his blood was 3.1 yesterday, no idea of the units, and they need it to be at least 10 to harvest. He was not very confident when he went off this morning and expected to be sent away again. However his blood levels were 11.1, the stem cells had been well and truly mobilised, every penny well spent. However he did not get onto the machine until midday and will have to be off at 4.00 pm so the stem cells can be sent to the lab and he can have his next shot at 5 o'clock. So he will be on the machine for two more days and back in on Friday for more blood tests and a general check up. Apparently a side effect of the plerixafor is to reduce platelets and his were down to 110 this morning and this gives rise to the increased risk of bleeding so we are not out of the woods yet. Keep those fingers crossed!

Thank you everyone for your support, as ever this is a roller coaster ride, a little good news then a little bad, often in the same day, makes me feel queasy,

Love to all Mari and Steve xx

[DaiCroParticipant]

What a relief for you both Mari!

It may mean a few extra days and a bit of moving about but it will be worth it when Steve's stem cell count reaches 2m. 🙂 😎

Dai.

[MariParticipant]

Absolutely Dai, it's a real relief, I was beginning to wonder if the whole thing would be off if they could not get the stem cells. I shall be sitting by the phone tonight, waiting for the call to say how many he has got today,

Mari

[tomParticipant]

Hi Mari and Steve

Well no rush to drag them out they must be comfy where they are 😀 so they will soon settle back in when SCT gets going 😎

Hope its a good phone call today

Love
Tom "Onwards and Upwards" xxx

[Mick66Participant]

Thats great news.

After a false start, Alison had 1 shot of Mozobil and she produced enough stem cells for 2 transplants in 4 hours on the machine it's a great drug.

She had her sct on 1st June 2012 and spent 20 days in hospital without any major infections, this is now day 47 and she is absolutely fine.

Hope you get your good news soon.

Mick

[ElizellenParticipant]

Keeping my fingers and toes crossed for Stephens harvest to go well, Mari!

I hope you are managing a little "me time" while he is in hospital.

Eliz
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