Hi Alanp
The stem cell transplant process is always worrying both to the patient and their family, especially when all the possible risks and complications have to be pointed out by our doctors.
It is impossible to predict how much support your son will require, like every aspect of myeloma, reactions to the process are wide ranging and pretty unique. However many patients agree to undertake a second if offered, and even occasionally a third, so for many it isn’t as bad as they feared. Reactions to SCT vary from serious life threatening complications, which are exceedingly rare, to absolutely no side effects at all, which is also very rare. Most of us suffer some unpleasant side effects, most commonly extreme gastric upset, having uncontrollable diarrhea and nausea, many suffer sickness, loss of appetite and sores in the mouth (although chewing ice before, during and after the melphalan infusion can prevent this). Most significantly all of us develop neutropenia c 5 days after the melphalan and are extremely vulnerable to all types of infection until our returned stem cells have engrafted and neutrophil levels reach over 1.0 g/l. During this time we can get ill very quickly if we get an infection.
Hospital stays even without serious complications usual last 14 to 28 days.
On discharge your son is likely to have little energy, and will need to sleep far more than usual and is likely to benefit from someone else preparing meals, looking after children and pets, shopping and housework. Hospitals advise that patients sleep in separate rooms from other family members and that hygiene is taken seriously.
It is worth bearing in mind that your son will have frequent check ups after discharge, and there is a possibility he will be readmitted, so your son is likely to need someone on standby for the children until these early days have passed. (I was surprised when I was readmitted, I didn’t feel really poorly, but now I realise that the hospital were right to be cautious)
There is a protocol that uses the day of the stem cell transplant as day 0 and most people have a good recovery by day 100. As your son is young if he is fortunate, it may be much sooner than that. Eg I felt a lot better by day 37, and had had a Complete Response by day 60 and felt much better by then, although I wouldn’t have been able to return to work until later.
You don’t say how old your grandchildren are, and therefore how much care they need, but unless they are older teenagers capable of helping your son, rather than requiring help themselves, the family is likely to benefit from help, and your son from being able to distance from any infections his children may habour.
I hope that your son’s experience is straightforward and that it’s a successful step towards a long period of good health and inactive disease. I really hadn’t anticipated how well I would feel after I’d completely recovered.
