You are here

Is this as good as it gets?

Hi everyone,

The following question has been coming into my head more and more lately so I wondered what other peoples thoughts are.
After 11 months of CML my BCR ABL counts are coming down nicely and I don't have any problems with the Glivec but at what you might term a day to day wellbeing level I don't feel as if I have changed in the last few months. I don't feel as if my energy levels are increasing any more which leads me to wonder "is this as good as it gets?"
Do any of you who have had CML longer than me feel that you have had small but noticeable improvements after say 2 years rather than 1 or even longer?
Maybe I am still getting better, just too slowly to notice now, but I would be pleased to hear anyone elses thoughts.
Best regards,

Colin.

Hi Colin,

It sound like you are where I was after the first year. My energy levels varied a lot. I would tend to feel very tired for 10 days or so every month. This was usually associated with a disturbed digestion system and slight water retention. My GP gave me Lansoprazole for the stomach and this certainly helped, along with drinking lots of water. Until recently I have been taking Lanzoprazole just when I felt the need but, at my latest six monthly consultation, she recommended I used it every day regardless.

I've now had CML for three years and have felt much better for the last year. I still get the odd day when my energy level is down but that may be nothing to do with Glivec. Incidentaly, my last two BCT ABL counts have been O.

So, the answer to your question seems to be, yes. You may well get to feel slowly better but it may be by learning how to manage it. I don't know how old you are, or how fit. I am 68 and still enjoy playing tennis two or three times a week. Sometimes though, I have to drag myself along and, occasionally, run out of energy too quickly. Its hard to know whether this due to Glivec or just getting old.

I hope it won't be too long before you enjoy better energy and those magic words, ZERO BCR ABL.

Best regards, John

Hi John,

thanks for your comments. I am 48 and until I was diagnosed I led a very busy life. I worked long hours running a small company and what leisure time I had was always filled with jobs at home.
I don't have too many problems with stomach upsets - generally only when I try to do too much but I suppose having been such an active person before, the culture shock has been massive. I can still only work 3 days or so a week and spend most of my spare time resting. I guess it just doesn't come naturally.
It sounds as though I might improve further from your experience so here's hoping.
Thanks again.

Best regards,

Colin

Hello Colin
Yes it does get better,I can assure you, tiredness is somthing that you will find you can live along with and adjust around it. I was dx in 1996, and have tried most therapies, starting with interferon, which really did hit one for six, but after an abortive autograft stemcell transplant, Glivec arrived in it's STI 571 guise, and things did improve, now on dasatinib (Sprycell) which I have found does deplete the Hb levels, with the inevitable loss of some energy, but it works well, and I am only too happy to be still here, having been given just 60 days way back in '96.
Habg on in there Colin, things will get better albeit slowly.
Have fun and keep smiling
Keith

Hi Keith,

thankyou for your comments and observations. You have clearly had quite a journey thus far. I do realise that those of us diagnosed since Glivec appeared have an easier time than those who initially had to make do with interferon. I am glad you are doing well now.
Kind regards,
Colin