[CarolsymonsParticipant]

Hopefully (depending on last blood test and BMB) I will be moving to stem cell extraction in the next few weeks. I have recently gone back to work on a "phased return"- 4 hours daily next week and am wondering how ill I will be with the chemo and injections necessary for the stem cell process. I know this is different for everyone, but some idea of whether I will be able to continue working (a desk job at a high school, but assessing students) would be helpful. My level of immunity is fine and has been throughout the 18 weeks of CTD so that should not be a factor, unless the IV cyclophosphamide zaps my neutrophils.

Carol

[tomParticipant]

Hi Carol

Well I had my injections Two per day for I think 5days and on day 3 I got bad pain in ribs and back and that lasted for two days and my harvest yielded enough cells for 2 transplants.

Was the pain bad enough to take painkillers well for me it wasn't I just wanted to make sure I got as many as possible
Good luck with your harvest.

Tom onwards and upwards x

[CarolsymonsParticipant]

Thanks Tom. I am surprised nobody else has replied to my question. Did the chemo before stem cell extraction make you ill?

Carol

[tomParticipant]

Hi Carol
Your welcome, no I was fine up to the cells being put back then it kicked off a few days after having them in, well worth it though I sit here nearly four years of remission and drug free 😀

Good luck on the road to remission.

Tom Onwards and Upwards x

[BabsParticipant]

Hi Carol,
I can only tell you of mine and another ladies experience who I met at our stem cell harvest, We both had the injections but unlike Tom the pains did get quite severe, (my daughter was looking after me and was so concerned she took me to the local A&E where they phoned Kings where my SCT and harvest was being done to be advised to tell me to take stronger painkillers and that the pain would subside imeadiately the harvest commenced and to think of the outcome being more pain usually means more stem cells to collect!!!!! )
I was able to go back home, not much sleep the next two nights, the other lady I met was kept in hospital the two days prior to her harvest, I suppose it depends on the pain threshold of each individual.
Could I have worked? No! But once the harvest was started all the pain subsided, luckily for me enough for two transplants and in one day, but it could have taken two days they advised me.
I was at the London info day held in London and spoke to a lady who had her harvest with the newer machine and her harvest went very quickly and enough for two transplants in the one day, when I had my harvested in Feb 2012 they showed us the new machine but the staff had not yet had the training so they could only look and get excited about the prospect of using it !!
I would imagine all are using the new machines by this time.
Anyway good luck with your harvest and SCT
Babs

[MicheleParticipant]

The most gruelling day for me was when I had chemo and many other infusions from 8.00am to 5.30pm in preparation for the stem cell harvest.
I was totally shattered and was unfortunately sick for about 30 hours afterwards.
The GCSF injections were no problem to self inject but the bone pain I was warned about a few days in was quite bad. However I knew that pain meant that the stem cells were being released into my bloodstream, so I put up with it happily.

Harvesting itself was not painful, just a bit tiring.

Could I have worked through that time? Probably not.
It'll be a tiring few days and you'll need to rest.

However, as we all know, everybody reacts in different ways, so at the end of the day, the decision will be yours as you're the only one who knows how you feel.
🙂

[HelenParticipant]

Dear Carol
I didn't have the cyclophosphamide priming before collection as there were no beds, so in order not to loose my 'slot' for harvest, I had double gcsf injections for the week before harvest.
I had worked full time from diagnosis to first gcsf injection day and though I was very tired had managed ok. I took a week off for the gcsf as there is a risk that you will feel 'fluey'.
I felt terrible from about day 2 of the gcsf, as though I had been kicked in the chest by a horse, the bone pain was awful. It settled after the harvest but I was off sick for about 4 weeks, too tired to do much at all. I had 4 good days then my ASCT….. Which took me a year to recover from.
My advice is to take it easy, if you have gcsf priming you will probably not feel 100%, listen to your body.
Hope yours goes well
Helen

[CarolsymonsParticipant]

Transplant doctor tells me that once I have the chemo (etoposide not cyclophosphamide) over 10 hours I will be neutropenic and no way should I return to work which is at a west London high school….so I guess it is back on sick leave and half pay again. Collection is planned for 23 December….an early Xmas present?

Carol

[bikerchrisParticipant]

Hi Carol, I had to check exactly what I did during my collection, but yes, I did carry on working. I had a few days to recover from the chemo, then did my injections in the mornings and went to work. I think I should have taken them in the evenings. I had 2 days up at the collection at Bristol, but the count was not high enough and it didn’t work. With quite a few people the first set of collection is not successful. The days when you go for the collection is very tiring. I then went on a motorbike holiday for a few days, and came back to do the next collection once I had the go ahead for the GCSF. I was probably totally mad, but I didn’t want to miss out on too much ‘normal’ life. If fact there may not be much time for you between collection and SCT as they like to press on pretty fast. I had a panic about getting as much done as I could before hospital as I am self employed, but in fact it is more important to get plenty of rest, and get ready for the treatment. Sorry if I am rambling, but there is so much to say. In the end everybody is different, and reacts differently to the treatment, but good luck, and look forward to getting it behind you. Keep smiling! – Chris

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