Ask Caroline, a Macmillan Nurse working with people who have Leukaemia, Myelodysplasia...
Jane is a haematology nurse with extensive experience in stem cell and bone marrow...
Been away from the site for a while as have been struggling a bit to 'move on' so thought it best ( that could create a whole other thread on PTSD and Anxiety lol)
However, I thought of you lovely lot for advice today when my CNS requested I start having pentamidine nebulisers.
Basically, my CD4 is still low 9 months post Auto (152 at last test @ 8 months - should have been more than 200 at 6 months, and meaning prophylaxis could be stopped) and they want me to continue prophylactic treatment (co-trimoxazole (sp?!) and acyclovir) .... However, I became intolerant to one or both and stopped taking them -and informed them immediately - at 5 1/2 months post transplant. I was experiencing extreme sickness and diarrhea, comparable to tummy bugs, at least twice per week. They agreed this was unusual and all tests were clear. It has taken until now for them to decide on nebulisers (I think they forgot about me as there is no regular contact anymore!) and I've been 4 months tablet free!! (Other than non-cancer/treatment related ones!)
Anyway, before I go on too much, what are the nebulisers like? Is it worth having them after such a break in treatment? (Tbh I am considering saying no to them as I have been feeling so well recently! I know they consider this a 'risk' ... I just want to make an informed decision....) And finally, what are the side effects like?
Also, has anyone else experienced slow climbing counts, specifically CD4, post transplant? They seem to think this is unusual, especially after an auto.
I am feeling well and recovering well otherwise, a bit tired, but we have discovered this is likely because I am currently folate deficient/anaemic.
I guess the thought of having to go there again regularly is filling me with dread, and as I am otherwise 'well', they don't seem to have much time to talk things through over the phone properly either.
I hope my post makes sense - have all 3 children home today who all seem to need Mummy at the same time haha so been trying to type this for hours .....
Hope u r all keeping well!!
Thanks all x
Hi and it’s good to hear from you.
I do understand why you stay away from the Community - I must be mad.
So I was on Pentamidine for 6 months every 4 weeks.
Had it in Inverness in the Macmillan Suit so did not have to go down to Glasgow.
It was to give me a break from Co-trimoxazole.... but I also have Asbestosis and it was over the second winter post my second Allo so some belt and braces....... made no difference keeping me out of hospital for 2 stays totalling 17 nights with Chest Infections, Lung Fungal Infections, Pneumonia and Sepsis.
Had it Month 11 to Month 17 post Allo. Went back on Co- trimoxazole for a further 4 months then this stopped along with Acyclovir (21 months post Allo)
it was ok - took about 30mins and had no side effects. It has a funny taste and dry mouth but that’s about it.
I just trusted Dr P that she was doing the best for me as she was the expert.
Mike - Thehighlander
It always seems impossible until its done - Nelson Mandela
good to hear from you, though I too understand your feelings at keeping away from the site.
Our daughter had Septrin (Co-Trimazole) 3 x a week post auto till she really couldn’t stand it any more (probably a year or so) and just decided to stop as she was otherwise well. I think she went a good few years with no meds other than the ones trying to get her HL under control.
post allo she had inhaled nebulised pentamidine, they gave her nebulised salbutamol first to ensure airways were as open as possible then the pentamidine. As Mike says she did say it tasted yukky but kept her ok. They did more when she was admitted with pneumonia about a year later, so probably a few more then. But she has medically listed in her notes that she has a very low immune system (presumably because of 8 years of active treatments) The regular immunoglobulins she’s having each autumn through to spring this last 2 winters has been helpful and she’s stayed fairly ok.
I think it’s well worth building vitamin B12 levels as often the ‘normal rate’ listed is low anyway. And we all need more vitamin D than we get in this climate!
Hope you continue well, and the suggested treatment isn’t too awful.
I have had nebulised Pentamidine every four weeks for the past two years as prophylaxis for pneumonia.
It takes about 20 minutes each time: five minutes or so of Salbutamol, to open the airways and then about 15 minutes of Pentamidine. Staff tell me that some people complain about the taste of the Pentamidine, but I can't say I've really noticed.
My CD4 counts are still very low, two years on, not helped by a year of Prednisolone for gut GvHD. I don't know what the most recent score was as I haven't yet received the letter but the time before, in August, it was only 0,09. The highest it's ever been was 0.14.
Other than ensuring I am careful about infection, they don't seem unduly concerned and have said it will sort itself out eventually. The thymus can be badly damaged by age, chemo, gvhd and steroids so I expect it's still recovering. Touch wood, I haven't caught anything nasty at all in two years. I've had an occasional bit of sore throat, but nothing worse.
Hope it continues to work out well for you.
Hugs from me too. xxxx
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