[FOXLEYParticipant]

Hi Peter,
I came out on 7th Dec after 17 days. I think it is important to go in believing that it will be for 4 weeks. Any remission is then seen as a bonus. I was fortunate in that I did not develop any serious infection. Apparently infections can slow up the reinstatement of the white blood cells. I now feel reasonably normal apart from some nausea, a loose bowel, general tiredness and residual bone pain from the Gcsf that they start giving on day 10. I am able to walk a mile or so without getting exhausted.
I forgot to mention that I think sucking an ice lolly during the administration of the chemo did reduce the sore mouth symptoms. I was also scared by the instructions the staff had for preparing the stem cell sachets. Apparently they are extremely brittle so I was just hoping they didn't drop one! Two nurses do the job, one checking on the other and for every sachet they repeated asking me who I was.

I didn't like the food. Before you go in it might be worth while thinking about buying tins of your favourite soup and perhaps some ready meals that you really like. There is a good system for storing your own personal supplies in the kitchen.

Get as fit as you can before you go in would be my advice.

Good luck,
Chris

[FOXLEYParticipant]

I would recommend using the hospital's counting system. In my experience everything happened like clockwork on the appointed day. In The Christie I was handed an A4 sheet outlying the protocol for the whole affair that gave me a good idea when to expect all the different treatments.
Good luck,
Chris

[FOXLEYParticipant]

Hi Peter,
Glad the harvesting went well. My cells were reluctant to show themselves so had to go back for the second line of approach without cyclphosphamide but with gcsf and an injection costing £4,800. They still proved reluctant so eventually only gave enough for 1.25 transplants. Gcsf seems to leave me with back pain for 2 weeks every time I have it.
Anyway the little frozen bags of cells did their duty exactly according to timetable in The Christie unit (staff brilliant but experience horrible). Because my cells were so dilute had to have the transplant over 2 days and it left me smelling of sweet corn. You get more gcsf on day 10 and the effects of that are only just wearing off.
Nausea and diarrhoea showed their ugly heads in due course. Nausea has continued after going home but now have it nicely under control by making sure that I do not eat too much at one time and with the help of a cyclizine tablet before each meal. Net result is that weight has dropped from 80 Kg pre SCT to 75 now.
I had a close hair cut before admission but the pesky little hairs were still a nuisance as they fell out so a nurse came and gave me another close shave. Nothing is growing very much yet so the morning shave is a pretty cursory affair.
Good luck with your SCT. I appreciate how everybody's experience is different but thought you might like to hear about mine.
Chris

[FOXLEYParticipant]

Hi Peter,
I will give a separate reply to this one. I started feeling better straight away – within a day or two anyway. After a fortnight I was talking about getting back on my bike but then the harvest procedure started :-(. The dose of cyclophosphamide left me nauseous for 3 days whereas that had not been a problem during the 3 week cycles. However the domperidone antidote worked well. The G-csf injections were OK to start with but after 6 of them I suddenly felt pulsing discomfort in my lumbar region – almost like repeated electric shocks. Low dose of paracetamol seems to keep that under control.
Chris

[FOXLEYParticipant]

Hi Peter,
It is worth getting the Myeloma.org info. sheet on bisphosphonates. There is an implication in it that you might be on them for ever. Where are you going for treatment? I am at Wythenshawe under Dr. Simon Watt. I was put on Zometa straight away but I had got fractures of my vertebrae that needed attention. The info. sheet suggests that a trip to the dentist before starting Zometa could be a good idea.Will let you know how the stem cell harvest goes.
Chris

[FOXLEYParticipant]

Hi Peter,
Seems I am a couple of months ahead of you, having been diagnosed in Easter week. A month earlier I had 'strained my back' but the strain turned out to be crushed vertebrae. 7 cycles of CTD knocked my p protein on the head and as I am (just) young enough for the high dose chemo have started the procedure. Was at the Christie at 8.30 this morning and will return at the same time on Wednesday when the harvest procedure will start hopefully. The drugs that encourage stem cells to enter the blood stream cause some discomfort but the staff at the Christie are very reassuring.
Chris

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