The organisers of the proposed round table discussion on long term survivorship would now like to extend their previous invitation to also include patients treated with imatinib as well as nilotinib.
The meeting is a small one and will take place in mid July. If you are interested in attending and sharing your thoughts and experience then please let me know.
Sandy
susan dickerson
I am just wondering if anyone suffers with night sweats on glivec I do and always have in the 6 years of being on glivec. The problem is that they are getting worse because of my age and menopausal symtoms so can anyone tell me if there is anything out there that is safe to take apart from HRT to help deal with this problem sue d
susan dickerson
I am just wondering if anyone suffers with night sweats on glivec I do and always have in the 6 years of being on glivec. The problem is that they are getting worse because of my age and menopausal symtoms so can anyone tell me if there is anything out there that is safe to take apart from HRT to help deal with this problem sue d
susan dickerson
I am just wondering if anyone suffers with night sweats on glivec I do and always have in the 6 years of being on glivec. The problem is that they are getting worse because of my age and menopausal symtoms so can anyone tell me if there is anything out there that is safe to take apart from HRT to help deal with this problem sue d
hello Diana........ discussion will be on issues like:
Disease awareness and information at diagnosis
Support and advice at diagnosis for the family
Changes 2, 3 years on from diagnosis
challenges and achievements have occurred over the years
Effects on relationships after diagnosis and long term management of CML- partners- friends
Change, reduction or adaptation of working life
Financial implications of living with CML- personal- professional
Financial advice and assistance
Benefits / entitlements / advice
Misconceptions about living with CML
Adherence to therapy and side effects
Hope this helps,
Sandy
Hi Sandy,
I don't know if my experience, or lack of it, would be of any help. If it is I would be willing to give it a go.
I have had CML for five years and enjoyed an excellent response to Imatinib (400 mg)for the last three years. Although I do have some side effects, mainly in my digestive system, I have been able to live a completely normal, retired life style. I play tennis 2 - 3 times a week, have a current pilot's licence (with medical)and recently managed to work, mostly on my feet, for three 40 hr weeks. I am aware of a few phsycological issues which mainly come up close to my six monthly check up or when my wife is trying to get me to do something I am not keen on, like going on holiday.
Where is this meeting taking place?
Kind regards, John
Hi John,
the meeting will be in central London in mid-July. If you can attend then that would be great. Please let me know and I will add you to the list. The organisers are finalising the list of invitees and I hope we can have a full agenda within the next 2 weeks.
Hope you can take part as I think you have a lot to offer such a discussion,
Sandy
