I was diagnosed with CML at the end of August and started on imatinib. All was relatively well until I got up to taking 400mg daily. I became increasingly nauseus and extremely tired. To cut a long story short I am taking 10days off the imatinib and will restart very gradually again next week with antiemetics. Cyclizine, procyclidine and maxalon didn't really help to alleviate symptoms. Any comments on coping with life, work and teenage children whilst trying to get to grips with this treatment because I am really struggling....
You are here
newly diagnosed and not coping well
is probably my best advice, things will get better with taking the drugs, have you tried changing when you take them with respect to before/during/after a meal? seems to work differently for different people. But you have come to a good place to get positive messages back from people in the same position as yourself (this web site)
Also have you tried seeking any level of councilling? where in the world are you?
After more than 6 months on imatinib I still feel very tired and occasionally nauseus, but not as bad as first.
As for coping with teenagers can't offer much advice as my only boy is just 2 years old...
Hi Rachel,
As Rob has already said, you've made a good move by posting on this site, because you'll find lots of support from people who've experienced what you are now experiencing.
On the nausea aspect of your medication - it's really important that you take Glivec after food and with plenty of fluid - water preferably. Some people find it helps if the food is high carbohydrate.
In terms of life generally and all the extra pressures that having cml brings, there is help in various places.
Where are you being treated? Do they have some sort of counselling available?
As I've already said, I'm sure that you'll get a lot of support and advice from this web site as well.
You're going to feel very down at the recent diagnosis - I remember when my wife was diagnosed over 4 years ago - it hit us like a bombshell.
As time goes by, and you begin to get a response from the medication, and more accustomed to getting on with life despite the cml, things will improve.
The new medications like Glivec and others that are in the pipeline are giving hope to many with cml.
Not many years ago, the prognosis wasn't too good, but with the new drugs, many doctors are viewing cml as a long term condition which can be kept under control with close monitoring of course.
I hope things get better for you soon, take care
Paul
Hi Rachael.
Sorry that you are having all these nausea problems.
You have been given the right medication to combat this. Try taking it at different times of the day or even splitting the dose and taking half in the morning and half at night.
Have you thought about the CML Seminar in Edinburgh at the end of November. I know there are still some places left and this is a great source of information and also you will be able to talk directly with other patients/ carers and even the consultants. Also on the Friday night before the seminar we are holding a social evening paid for this site so that is even more reason to attend.
Good luck and feel free to ask any questions.
If you want any further info on the seminar please email me at steven.carol@ntlworld.com.
Regards
Steven D
Hi there, I just wanted to say that Im thinking of you and to hang in there. I dont really have any advice other than I think just taking each day as it comes is the best route (i think someone else has already said this).
Teenagers are hard enough work as it is without having the tiredness, sickness and everything else that goes with it so I dont think you should be too hard on yourself.
Sending you much love
Jayne
Thanks so much for this - just knowing that there are others out there in the same boat is a help.
I am in central London and am being cared for by Keith Patterson at UCLH.
Will try some of the suggestions I have found on this site when I restart on imatinib next week.
Many thanks again
Rachel
Paul
Thanks for your reply - it is a help just to know that htere are others out there in the same boat.
I'm in central London and am being treated at UCLH (Keith Patterson).
I'm very encouraged to hear that things have got better for your wife and look forward to being able to tell asimilar story!
Kind regards Rachel
Rachel
I can probably help you quite a lot, however I am in hospital having a transplant. If you read my diary
www,caringbridge,org/visit/susanleigh you will be able to see that I have had problems with both glivec and bms.
However don't assume that because I ended up having a transplant that this may be the way you need to go. There is plenty between where you are and where I am now.
I have 3 teenagers so I understand those issues.
If you would like to chat then if you send me an email with your phone number and when I feel up to it - feeing fine at the moment - I can call you.
I am under the Royal Free and this team works closely with UCH.
Hang in there
Susan
Hi Rachel,
I was diagnosed mid-April and I had the same problems of nausea and tiredness as you.
By the end of May it got too much, so I started taking the Glivec in two halves, one after breakfast and one after evening meal. It made an enormous difference. I try to drink lots of fluid, but I don't like it and can't seem to get much above 2 litres/day. I hate water and, despite the advice to avoid tea, I still drink quite a bit of it.
However, the Glivec seems to be working and at the last BMB I was down to 2% Ph+ after 4 months at 400mg.
Hang in there and try it two halves. It worked for me.
John
Susan
I found reading your diary so helpful - it sounds as though you have coped with some very difficult side effects on Glivec and I do now wish you the very best with your mini BMT. I am interested that you managed to do some very exciting things before your transplant - on 400mg of Glivec my capacity to do much at all was severely restricted because I felt so sick and very tired. Having said that I only managed just over a month on the full dose before having a break of 10 days. I'm now very cautiously taking just 100mg for the next two weeks and then returning to the consultant... This is so different to my normal pattern of living and is probably the reason I'm so exasperated.
Thanks for being in touch
Rachel
Hi Rachel
I am glad that the diary helped however I have to tell you that I was NOT on any medication whilst doing those wonderful trips. Shortly after I started glivec we went to Barcelona and I spent most of the weekend looking for the nearest toilet. We went away in that summer and again I was the expert on the nearest toilet. After that I always took a break from the pills whenever I went away. I haven't actually had any glivec since mid-July, but all this is with the complete permission of my doctor.
Everybody is so difficult and I think that if you have a good relationship with your doctor and they are willing to actually listen to you then things can be discussed and worked out. I am lucky that my doctor is happy to let me email him with any issues and he always responds.
I have had very many strange problems with glivec and bms but it doesn't mean that you will.
I had some nausea at the beginning and took some domperidone for a while then it did subside.
The tiredness is extreme at first and then does get better and then can come back and give you a couple of bad days and then settle again. It is variable, give it a few months, I think if you feel less sick then you may cope with the tiredness. Nothing worse than feeling sick.
Please email me if you would like, I am feeling fine at present,
Susan
Rachel
I just wondered how you were getting on with the glivec?
I do hope that it is easier for you
Susan