Hi guys, I just wanted to say hello. Dx 8th March 2012 and on Glivec for one wek. Needless to say I am a bit daunted by it all. Got out of hospital and caught a bad chest infection straight away so I don't know wether the tiredness and aches are due to that or the medication. I really have no idea of what is in front of me and am obviously nervous about it all but I'll take it as it comes.
Regards for now
Hello Don and welcome! Please keep coming back as you will find this place to be a great source of current information about CML, as well as a great place to find support from others in the same boat. You will probably feel out of sorts in many different ways the first few weeks and months. Hang in there...things do get better with time. From what part of Ireland do you hail?
Wishing you good health and many happy days,
Welcome Don. Are the aches you're feeling mostly in your limbs? When I first started gleevec I had lots of pain in my limbs, it didn't seem to affect my torso at all. Now I usually just get cramps in my hands and feet, and I'm coming up on 1 year since dx. Hope that helps. Take care and drink lots of liquids!
Hi Don: Welcome to the Group. You are just starting on the Gleevec, and you will be feeling various side effects.
When I was first diagnosed, and a bit scared as to what to expect with all the joint pains they told me that when I felt all the pains in the joints to realize that the Gleevec was killing off all the cancer cells. That helped me to get through it.
Many years later I still get the aches and pains along with fatigue, but I still take my Gleevec everyday. I also have terrible Arthritis, so I do not even know anymore what my pains are from. I just take one day at a time.
We are very blessed to have these TKI drugs available to us. Just ask anything you want as you get adjusted.
You will meet some great people on here who are always ready to help and support you.
We have a lot of new people who have joined in like you, and a lot of old timers who have been Living With CML for a long time. Hope we continue to hear from you. I do not think we have anyone from Ireland. I am not sure.
Hi, Don. . .welcome to the club. . .sorry you had to join.
I'm sure that you're overwhelmed right now, but you will find your new normal, and life will go on. Despite the mild side effects that I have from medication, I continue to kayak, snowboard, motorcycle, and have a great time! Life does go on, though you certainly have to learn how to deal with the changes that will occur.
All the best. . .
Sorry to see you here, but glad to have you. Where are you in Ireland? Is the weather as wonderful as it has been here the last few weeks? The New England area of the US is having an early spring this year!
You'll get lots of great information and help here. Post when you have a question, or try the search function. This place was great for the first few months when I was in need of strategies to cope with side effects.
I'm an Irish Lass, or Lassie,(no that can't be right Lassie is a dog) Anyway I'm an old Irish Broad, I hope we're not called dogs.
I had the same bad luck you did I was diagnosed 5 years ago and put on Gleevac, and then 3 weeks later I caught pneumonia, so I didn't know if it was the Gleevac or the pneumonia that was making me so sick, probably a bit of both. I had a very good response from Gleevac but I had stomache problems before cml so G did aggrivate them. But there are many people on this site who have been on G for years and are doing very well on it. I am on Sprycel now and it is a lot easier on my stomache and I am responding very well to it. Most of our meds do have some side effects but that is what is great about our discussion board we all share our different ways of handling our side effects. Mine is hard peppermint candy for nausea, and never leave home without immodium. And for stress I listen to The Irish Tenors, Celtic Thunder, and watch Riverdance dvd's, Which I have seen all of them in concert, more than once.! I always dreamed of going to Ireland,I guess I'll never get there now, but just looking at the countryside videos is breathtaking I just watch them over and over. And the castles, if the walls could only talk. Hee Hee we would get an earful wouldn't we? Sincerey Billie Maureen
Billie Maureen, is it now? Faith and Begorrah!
Don, I definitely think she is flirting with you and trust me, you could do a lot worse! Welcome to the site no one wants to join! I can only repeat what others have said, you will find wonderful, caring, intelligent people on this site. I hope you will join us!
Many thanks guys for all the advice and support. Susan61 said in her post that I would meet great people here and I believe I already have ! Its good to know that htere is somewhere to go when you need a bit of help or support. Just out of interest, I'm 43 and from Co. Donegal in Ireland. I dare say you will see plenty of questions from me as time goes on.
Remember to check out http://treyscml.blogspot.com/ for good info. I am on Tasigna, so don't know anything about Glivek personally. But, like Marnie, this CML has not kept me from playing hockey, rugby, and just starting chen tai chi. Oh, I am 56. For me, the bumps in the road from this are much more tolerable than the alternative! Take care, Jack