Hi just introducing myself, I am Ali(female!) & I was dx in Sept 07 with CML, so this is still very early days for me. I am taking Glivec with all the horrible side effects. I had anothe BM biopsy last week, so a long 5 week wait for the results. I am wondering if there is anyone in my area, I live in Devon? I have a great husband who has been a wonderfull support to me and our children one of 29 & the youngest of 15. Whilst Id rather not be writing on this support site, in a funny way Im looking forward to learning more & meeting others.
You are here
new member
Hi Ali
Just to say hello and so sorry to 'meet' you! However, this site is a great source of information and support. Don't be afraid to ask questions, however silly they may seem We have all been where you are now and there is always someone who has had the same symptoms or concerns as you may have.
Good luck with the glivec, it generally works very well and yes there are generally side effects, most of which are manageable.
I live in London so can't offer to meet you for a coffee unless you are passing through but I would say that it often is very useful to meet up with other people. It really helped me.
Susan
dx Mar 07 post BMT
www.caringbridge.org/visit/susanleigh
I am in somerset, my son was diagnosed in sept 06 aged 9, so looking from the other side so to speak but if you would like to chat/ meet then let me know.
Julie
email julie@mason67.fslife.co.uk
Hi Ali,
I'm so glad to hear that you have great family support. That truly is a godsend. Great to hear that you live in a lovely part of the country. I moved to Cornwall for about two and a half years some months after I was diagnosed in late 2003. We moved back to Mid Beds in early 2007 due to family circumstances, but I still have a house down there. I'm sure you know there are some beautiful places in Cornwall too. As far as the CML is concerned, you probably know that there are now several treatment options, and the outlook for CML patients these days is brilliant. My own experience tells me to tell you not to rush to make any big changes in your life, just let things settle down. Also, there is every reason to be very positive and optimistic about your future. I too suffer with side effects, the worst for me is that the toilet and I have become very well aquainted!! This is a great site, and there is also a wealth of other information and support out there. If you haven't found it yet, try www.leukaemiacare.org.uk, I volunteer with Leukaemiacare, and like here, there are some great people there to help you. Also try www.lrf.org.uk, & cancerbackup.org.uk
Very best wishes,
Phil.
Hello Ali,
Yes it is early days for you as you say, but the fact that you have already found this site and you have introduced yourself in a bid to contact others is a good sign. Glivec is a wonderful drug which has and still is saving many lives. Your side effects may be pretty bad at the moment but you will hopefully find that you are able to manage these over time and that some of them do disappear, especially aching legs/cramps.
It is wonderful that you have a supportive family and I hope that they too will find support from others on this site who are carers of patients. I do hope you find all the information you need ... and other patients based near you who are willing to meet up.
best wishes,
Sandy
Hello Ali
You have found the right place, we are all here to help you along, and to make the life of the 'nasty' that is living with you, upleasant. Side effects of Glivec affect people in different ways, there does not seem to be hard and fast rule, i.e. one size does not fit all. I was lucky, as had no camps or bone pains etc, but did find that a low fibre diet was necessary, this we found out by talking to a dietician, so eat unhealthy was the orders, eventually all repaired itself, and now back to what passes as normal. I was very lucky as well in that Glivec gave me a lot more energy that I had experienced on interferon, so a big plus. I found that taking Glivec as part of and during the main meal of the day negated any dietry side effects, so worth a try. I now take Dasatinib and take it in the same way, and no digestive ill effects. Worth a try ?. For myself, I have never acknowledged that I am on a 'cml journey', nor a 'cancer journey', I do acknowledge that I have somthing living along with me, and that I am making sure is going to 'drop out' because it cannot keep up with me. Positive frame of mind. Sympathy is a killer for me, as is self pity, cml has decided to come along for the ride, we have to do our very best to make it get off at the next stop. Cml and I have been riding along together since 1996.
Always have fun and always keep smiling
Keith