Phil should count himself lucky that he only has an IV stand to cope with (only joking). I had to carry one of those 24 hour pump things for sickness out to the loo with me every time – and as others have remarked that was not infrequent. Managing pump, drip and bed pan all in the confines of the bathroom was no easy task!
Sounds like you will be…[Read more]

Hi Maureen,
I would also add that travel time to the hospital is an important consideration too. I don't know what your husband's treatment plan is but if it involves a stem cell transplant you will be making endless visits when you are both very tired.
Chris

Hi Megan,
From what I understood the 'bottom' is when the white blood cell count is zero! You then know that the melphalan has done its worst and the only way is up.
I think it is also sensible to be prepared for set backs. When I came out of The Christie a few weeks back and feeling quite well I pushed the doctor's words about being prepared…[Read more]

Hi Alastair,
I have no information on which to recommend one clinic above another. I do know for certain however that you will be making many, many, many hospital visits so please do not underestimate the travelling. Both patient and carer are bound to be tired and emotional at times into the bargain and that will contribute to making travel even…[Read more]

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…[Read more]

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

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…[Read more]

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.…[Read more]

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…[Read more]

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…[Read more]