2 month ago was diagnosed with CML new Submitted by Hannah on Sun, 08/04/2012 - 19:46. HI everyone,i m 27 years old,first month was taking hydroxycarbamide ,then mixed with imatinib.So ,now i m taking just imatinib,but still tired ,can not do much.When i was diagnosed had a big shock for my family.Luckily i have 2 small kids,.I try to be positive ,but quite often have disbelieving :how long im going to live,will it work for me,always think that do not want to leave my family,my husband alone with kids.I try to bring my self up,but quite often depress with this sort of questions.Please,advice me?
You are here
2 month ago was diagnosed with CML - Submitted by Hannah on Sun, 08/04/2012 - Reposted from thread below
Categories:
Hi Hannah
Welcome to the site, and the CML club. We've all been through the same shock and questioning - will it work for me, how long have I got, etc. This site is wonderful, and people here can answer nearly all of your questions. There is so much to learn at the beginning, so many terms and questions. Don't try to understand it all at once!
When I was diagnosed, two and a half years ago, the doctor said something like "the bad news is that you have leukaemia - the good news is that it is very controllable. If I had to have leukaemia, this is the kind I would choose."
I've been on imatinib all this time, and so far it's working well for me. Although there are side-effects - cramp, tiredness, etc, they do get better as the months go on even if they don't disappear altogether.
If you want, email me at olivia.bell1@btinternet.com
Olivia
Hello Hannah and welcome. I hope as the weeks and months go on you feel able to ask here for specific advice and support. You will still be very much in shock at your diagnosis and the feelings you describe will take you some time to overcome. But you will find a way. There are many many people 'out here' on the various online discussion forums/websites that have experienced many of the fears you are feeling now. The therapies available for CML are very very effective, and more or less guarantee a normal life expectancy for the vast majority. Imatinib was the first drug of its kind and over the last 12 years or so has saved countless lives.
There are many members here who can advise you about dealing with the various side effects that you might or might not experience. For most the side effects are easily managed. Tiredness/fatigue is an issue for most of us, but there are ways to overcome this too.
The main message is this - it is highly likely that you will survive for the very long term.... long enough to see your kids grow and have their own families..... Take heart from the members of this and other forums throughout the world. Currently we have over 5,700 individuals who visit this website/forum every single month. There are a lot of us 'out there' you are not alone, and neither is your family.
If you have any particular issue that you need advice on then please ask. Meanwhile, try watching the video's see link to page on main menu- particularly the presentation on how to live with CML and manage therapy side effects by Carolyn Blasdel.
You might ask your husband to watch it too. It often helps if you learn about the disease together with those that are closest to you, this way they are supported too.
Best wishes,
Sandy
Welcome to the club. I'm a newish member nearly six months dx and can recall the feelings and questions you are asking. Take heart that it is a normal experience you are going through in dealing with your dx. As already mentioned by Sandy and Olivia give yourself plenty of time to adjust and take in information about CML - there is lots of excellent news about it and the prognosis ( my registrar and specialist nurse actually encouraged me google it). Personally I find everything I need to know about it is on this site and they're a great bunch on this forum. The Glivec can make you tired especially in the early days and also the initial worry and stress can add to that but you will find a way to manage it . In the meantime take care Jo ; )
Hi Hannah and welcome to the club.
I was dx at 28yrs old (last year) i also have a young child and can remember the same feeling, what will my son do if i'm not here etc how will my family cope. the news is a massive shock for anyone to take. What i can say is that i rarely even think of my CML anymore and quite often forget about it. I have been on imatinib for 12 months and all my counts are going in the right direction as i imagine yours will over the coming months. Where are you being treated? As for tiredness this is something that gets us all try and rest when you can and don't try and do to much initially. I find exercise helps the more i do the more enrgy i have (don't know how that works but hey ho). As for appearance no-one can tell i have CML so you can choose who you want to tell. This site is brill and has given me loads of advice and there is never a silly question to ask. please keep in touch and ask any questions you need.
Chin up it does get easier
Ni x
Easier said than done in the earky days, i along with everybody else wish you all the best. 6 months in for me and all going very well, life, sport, work etc. Ready and lookm at the web will all give you alot of reassueance. The future is good for us,thanks to to the treatments now about and to CML support.
All the best Nigel
Hi Hannah,
I was also 27 when I was diagnosed, also with 2 young children. That was 5yrs ago last week. Stay positive, take each day, month and hosp appt at a time and keep taking the meds. As my prof said to me, there is no reason why Glivec won't work for you. Always stay positive and soon it won't be as important as it is at the moment. The worries ease, you won't believe it at the mo but they do, they never go away but it does become easier.
Take care, Liz x
We all face it Hannah, as others have said, the uncertainty of what future we may have.
For me, the hydroxycarbamide treatment lowered my red cell count even further and in those those first few weeks I was feeling considerably weaker and in need of transfusion.
When imatinib started to bring my blood levels back to normal it was like being 20 years younger. There were side effects like a rash and cramps. I saw this as part of the transition back to good health. The side effects passed as this happened.
You're going to be around a long time. Read the stories here, be sure of it.
Jeff
Hi all I was diagnosed with CML on 12 March 12 in Sydney, a current trial was explained to me and I decided to join it- the drug is Nilotinib- after 7 days treatment my poor pancreas was unhappy so I had to stop the treatment, I resumed it again yesterday.
My Doc believes that my pancreas will tolerate it this time- has anyone had similar experiences and what happens to the pancreas second time around?
As above, it was a huge shock getting these CML news out of the blue. I struggle to convince my sons and husband that there is a problem with me as I look ok - they cannot see the illness! It is a lonely ride but I am hopeful that I can live a good few years and see my grandchildren grow up a bit - I am 57 yrs old and have 5 grandchildren.
cheers
marilu
Welcome to this very exclusive club! You will find that they are a very intelligent and extremely kind group of people. It is not a club you want to join, but, once you qualify (as you have) you will find answers to most problems that living with CML throws up.
I say living with it, because, before Imatinib (and its descendants), life expectancy would be between 4 and 6 years. I have been taking Imatinib for 8 years now, and my blood is as good as it ever could be.
Whenever I go to the Royal Brompton hospital (for my poorly heart - 4 MIs, 3 of them after 4xCABG), they always write on my notes "co-morbidity of CML".
As far as I am concerned, there is no "co-morbidity" as it will be my heart that gives out first, but, hopefully, that will not be for a long time. CML is nothing really to worry about - OK so you might catch a few diseases which you would not normally have (I have recurring pericarditis) due to CML and its treatment, but this is all part of life.
Enjoy each moment, and you will be a happy member of this club for many, many years.
Hi Richard and all,
Just read you post, I have no heart issues that I know of and regard myself as fit, however 12 years ago did have Pericarditis, I was surprised to see you post. Is pericarditis an issue with CML generally does anyone know, I have not read this anywhere, however having had it once and really forgotten about it, am now wondering if it is something to be keeping an eye out for ?
Thanks Nigel
I had never had it before I had CML, however, as I have fairly frequent heart procedures, which involve catheterisation, angiograms, angioplasty and stents, pericarditis is always a risk. Apparently, it is very difficult to catch, except when the heart is "disturbed" by such procedures.
There is no cure for this extremely painful condition, just take lots of pain-killers. I do not know why it is recurrent in me, but it has been suggested that it is because it never really goes away, it is agitated by angina, and I am immuno-compromised.
Hi! I just read marilus comment . I'm newly diagnosed with CML . Found out when I went to hospital with bad side pain. I don't feel sick other than being really tired and nauseous plus I'm short of breath. Is this common? . I haven't started treatment yet, but am a bit nervous. Any info about treatment with sprycel would be greatly appreciated. I am. 54 years you g and have 6 kids and. 9 grand kids!! I want to be around a while.