[caroParticipant]

Hello Ree2112
I am sorry to hear that you feel so low. I actually think that you are doing incredibly well to be one year post SCT and working full time. Credit to you!
I had my SCT three years ago and reached state pension age while I was in hospital (by some quirk of good timing) I am so glad I am retired. I do keep very busy, but doing stuff I want to do. It is a long recovery, during the first year you may feel ok, but everything is much harder work than it used to be. But, in my experience, it does get a lot better. But our bodies have been through a lot and are still being hit with powerful drugs, do be kind to yourself.
Hang in there, you have got over the first year, and working full time too. I think you are amazing.

[caroParticipant]

I am keeping very well thank you, over two years on lenalidomide now. Awful diarrhoea (you really want to know all this don’t you), which is a known side effect, caused by lenalidomide blocking bile acid reabsorption. RUH at Bath immediately added in cholestyramine sachets to my treatment, these absorb the bile acid and have really helped. I tell you this because there is another thread on here from someone who was waiting and having investigations between gastroenterology and haematology about it being prescribed. Apart from that, I have had no problems.
I would like to collect my prescription (as I don’t feel I need a delivery), but this has proved a problem, the ‘system’ is geared up for deliveries, so I have had to give in gracefully and have them delivered. This is the only admin/communication problem I have encountered.
A friend who is a retired pathologist told me that I was wise to have chosen Bath. Salisbury would have had to send me to Southampton for some things, and Swindon would have worked with Oxford. So great that Bath can do everything.

[caroParticipant]

I hope that this reply is not too late to be of use to you. But I want to tell you what wonderful treatment I get from the haematology team at Royal United Hospital in Bath. From initial diagnosis (dodgy time with my GP, as I think it is with lots of myeloma patients, but great once I got to Bath), via chemo, stem cell transplant and now lenalidomide.
I cannot praise them highly enough.
I live in mid Wiltshire, and had the option to go to Swindon, Salisbury or Bath.

[caroParticipant]

Hello ted369
Yes, I have been on cholestyramine prescribed by my haematologist (well the clinical pharmacist in the haematology department) for nearly a year now, and it has changed my life! But, unlike you, I am only taking lenalidomide.
I had been struggling with diarrhoea for a while and mentioned it in a telephone consultation. I hadn’t known that it was due to the lenalidomide blocking bile acid reabsorption, and it often starts after taking lenalidomide for about six months.
I was immediately prescribed cholestyramine, I usually only take one sachet a day, with the meal that contains most fat (cheese sandwich for lunch?). It is quite awkward to take it with an evening meal as it would prevent the absorption of lenalidomide for four hours after taking. So I have a low fat meal in the evening, and that works pretty well (most of the time!)
I hope you can get it and it works well for you
Caro

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