[peggyParticipant]

I have an appointment tomorrow with my cosultant to sign consent forms for my sct etc. so I will ask him but meanwhile I am very confused..

I am on the myeloma xi trial, was randomised to get velcade, and have just completed 5 cycles of this.
On Friday I was told that i was ready for progression t SCT. Two days have been set aside for stem cell collection (12 and13November) but no mention was made of GCSF mobilisation….. I was informed that I didn,t need cyclopriming. My partner was with me at the meeting and agrees with me aboutt the details.

Could we have misunderstood? Could the dates be for the gcsf? Are further appointments /tests required between gcsf and cell collection? Indeed is gcsf a requisite?

Any comments gratefully received

Peggy

[eveParticipant]

hi Peggy

Well all I can say is when we went up to Kings and went through the procedure with a doctor,nothing went as he said,different appointments came through some were done before stem cells taken some after!!!! Must admit i felt as confused as you,we had a similar conversation,after what we were told and what did actually take place!!!:-P

I think its about actually organising the whole thing its hard work in a busy hospital,they know that it will all fall into place,just forget about the person concerned sometimes,Saying all that could not fault them.

Before Stem Cells were taken,Slim was given a does of chemo to bring the cells into the blood,then he had to inject himself for about5 days,then stem cells were taken over a period of 2 days,this was done all as an out patient travelling 86 miles up to kings.Other people have had this done as an in patient different hospitals have different methods.
Hope this is some help.Eve

[HelenParticipant]

Dear Peggy
I suspect all will be revealed tomorrow, usually a full medical 'work up' will start from tomorrow, bloods, hiv tests, ECG, X-ray consent etc and full instructions on gcsf injections which you will probably be taught to do for yourself. Not everywhere does cyclophosphamide priming, but gcsf is usual as a first treatment to get the stem cells going. You will then get a list of appointments for the above and on the 12th will come to the unit where you get your blood tested to see if there are high stem cell numbers in your peripheral blood, if there are you go on the aphoresis machine that day and possibly the next as well.
Where are you going for your procedure? Hope this helps
Love Helen

[peggyParticipant]

Thanks Eve And Helen for your responses…

Roll on tomorrow when I will find out what,s happening. It,s school holidays this week so we,re going away for a few days and the following week I have a few non-alterable (non-medical ) appointments so no time to fit in any further medical tests… Tomorrow will reveal all.

Peggy

[VickiParticipant]

Hi Peggy,

Colin my partner had gcsf injections to help his cells mobilise. It was only when that failed he had cyclophosmahide priming and gcsf together. I get the impression that gcsf is always involved, irrespective!

Good luck with your harvest x

Vicki and Colin x

[DaiCroParticipant]

Hi Peggy,

I suppose you have got your answers now but just a note to say that I have never heard of a harvest process that didn't include chemo-priming and GCSF injections… if I am wrong on this I would like to know what process was followed.:-|

Best of luck any which way (Look… me using an Americanisation… whatever next???):-D :-0

Dai.

[peggyParticipant]

Hi all,

Yes, I,ve got the answer. Dai, ther,s to be no chemo-priming. But I have got the GCsF injections. I had thought that I would have more hospital appointments and more tests but I was simply handed eight syringes to inject myself with starting on the day four days before the stem cell collection. That,s no problem but is that how it is usually done?

Peggy

[HelenParticipant]

Hi Peggy
That's what I had, maybe they do the other stuff after collection where you are.
Love Helen

[SharonMParticipant]

Hi Peggy, I went through it at the beginning of the year and yes, the GCSF injections are the norm I think. Good luck with the harvest and everything that follows.
Sharon x

[SueMParticipant]

Hi Peggy,

I think the "standard" is to give cyclphosphomide then gcsf injs but I know Dr Cooke at QE Birmingham didnt give these when i last saw him .

I looked up to see how likly i was to predict ease of harvest and decided against the cyclo from my consultant.I didnt want chemo affecting my stem cells pre harvest,some say it does an extra cleanbut Mark cooke disagrees

I harvested 5.2 mill cells over 2 long days. with no chemo pre
I also wanted to delay my asct as appeared to be in remission from he velcade.I managed to get nearly a year of ok ness 🙂 then back on treatment for nearly a year as single wekly velcade this time and had asct may this year.

I didnt want to lose my hair earlier than when i actaly had asct partly as my daughters was only 9 and didnt want her gettin the whys ur mum wearing a wig ,I'm now in that wig and its messy like my normal hair and no one notices 🙂

The tests to check ur fit for transplant come after,ie lungfunction tests ,ecg etc

good luck for a wonderful harvest (ps the harvesting machine scoops from the blood and sifts out the stem cells into a bag but in another bag go ur red cells etc that got scooped up too so you can feel bit wiped out for a week after and the emotion of it

best wishes#
SueM

[VickiParticipant]

Hi Peggy

My Colin had gcsf injections alone, for the first harvest attempt. That did not work for him. The next go he had cycloprime and gcsf…..that didnt work either. (he has always been stubborn!). His third attempt was gcsf and plerixafor, another injection that guarantees harvest. After all that he only got 2.07m which is enough for one transplant.

Best wishes to you…. The only benefit for Colin with cycloprime was that he got used to his hair disappearing (if you ever do get used to it!)

Still al the best and good luck 🙂

Vicki and Colin x

[bikerchrisParticipant]

HI Peggy,
I think you have found the answer, you have to have the GCSF which makes the cells come out of the bone marrow into the blood, otherwise the whole principle of the thing doesn't work.
I had the week of injections like you, but they didn't make it clear that you are supposed to take them in the evening, as the effect is at it's max 12 hours later. I didn't.
I had the cycloprime, but it seems like this depends on the advice of the various centres.
Sometimes standard Gcsf works, but not for me, or Vicky and Colin who replied. There is another drug, far more expensive, but they will try the standard issue first and see what happens. You won't have the lung tests etc until they have collected your cells and they move to the next stage.
Sorry if this is a bit factual, but if you want my full account, look at my story 'Stem Cell Collection second attempt' under 'treatment'.
very best wishes for your succesful harvest of millions of cells! 🙂
Chris

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