I have just been diagnosed with CML last thursday (5th) and am still in a state of shock really, things seem to have happened so fast, i was sent for a blood test by my doctor on thusday morning as I'd been feeling rough for a while and by thurday night I was being told I had CML.
I don't really know what to think or feel anymore, I started the Gilvec yesterday and my legs are achey and crampy today. What other side effects do people get? Do many of you have a problem with water retention? I noticed it was listed on the leaflet as common.
I've had the bone marrow biopsy but not got the results yet, I'm told it's unlikley I'll need a transplant, is this true?
I'm finding I don't know what to do now, how can I carry on as normal knowing I have this, will I eventually feel normal! At the moment it feels like my life revolves around blood tests. I've taken time off work but am unsure when I'll be able to go back, is it just a case of when I feel able?
Anyadvice would be appreciated.
You are here
Just been diagnosed
Hello,
I am sorry to hear that you have been recently diagnosed with CML. I know it can be really shocking as i have gone through it. I was diagnosed on the 18th of may 2010. I have read and seen that majority of CML patients actually live a normal life. My white count was 134. What is yours? I was put on to Hydroxyurea to bring my white counts down. I started glivec on the 14th of June. At first I was having really bad heart burn but it did go away with time. Then I was having really bad aches and pains in my body but after a couple of weeks I was only having it in my legs (which you seem to be having). I had to ask for really strong pain killers. I was given Tramadol, but it did not work and then I had to take strong ibuprofen which did help. Taking a hot bath actually helped temporarily. After four weeks of starting the glivec the pains stopped. I think it’s when your body gets used to the glivec. I know fluid retention is very common and many people start putting weight on but unfortunately there is no other way out apart from diet and exercise. Try to keep yourself well hydrated. Apart from these two side effects I am not having any other. I spoke to my consultant at the king’s college hospital London and he is not worried about any of these side effects. I am advised against the transplant, one because my consultant thinks if glivec works for me then he doesn’t not have to consider the transplant, second transplant can be very risky. Yes you may have to go to the hospital regularly probably every week. I have been going to the hospital every Monday since 18th of May 2010. You will be able to go back to work once everything settles down for you. It took me 5 to 6 weeks for everything to settle down and me being back to normal. I know it can be very worrying thinking what is going to happen. But i believe in being positive. By the way I am 28 how old are you?
Cheers
Hi Jackie,
I too was recently diagnosed. 28th May, and in much the same way as you. Blood test in the morning and a phone call ffrom my doctor in the afternoon. I vividly remember the feeling of shock and recall feeling like a pin cushion for the first week or so as many blood tests were done.
10 weeks on, things are very different for me. I'm getting on with things in much the same way as I used to. I've still got a bit of fatigue and occasional slight rashes though I've been told to expect these slight problems to improve with time. I think so little about leukaemia now that I have had to set an alarm on my mobile to remind me to take the tablets.
In the vast majority of cases these drugs work so well that it's very rare to resort to a bone marrow transplant.
I do hope that this is helpful to you and that you start to feel better soon.
Hi,
Thanks for both your replies, it helps allot to hear of other people going through the same thing.
I am on Hydroxyurea as well as Glivec atm until my white cell count comes down, it is currently 107 but started at 184 so has come down allot already.
It's good to hear that you can lead a normal life. I am 38 and luckily have had all the children I wanted to have but it all seems a little scary.
I just need to get my head round it all..
Hi Jackie
It is a shock to be told you have CML, I am 2 years on now, and it has become part of every day life. I have had minimal side effects, they seem to come and go. I am still working, playing golf twice a week, and enjoying life. I am sure when you get over the initial "why me days" things will get much better for you.I am on Glivec 400mg and have had panda eyes, pains in my chest, aching legs, weariness, going to the loo alot, but all these seem to subside as you become acustom to the medication. I still go to Kings every 3 months for blood tests, which I feel is a confidence booster, as you see the results getting better you know that the drugs are doing their job. There is lots of support out there, and I am sure that the future is very good for you. Best wishes
Tony
Hi Jackie
We've all been there, and can well understand your feelings of shock and disorientation. For me, it was just over 9 months ago, and it did take me a few weeks to get over the initial feelings of shock and, at times, disbelief. At first, I went weekly for checkups, then fortnightly, monthly and now I am down to every 3 months - which I expect to be the routine from now on. The initial side-effects of Glivec were painful cramps, loose bowels (and slightly blurred vision which cleared up after I stopped the Allopurinol). The cramps are stil there, but not every day, and are much less severe than theywere in the first couple of months. It does take time for your body to get used to the drugs. At first, I read the Glivec leaflet so many times that I almost knew it off by heart! One of the most heartening things for me has been this forum, to know that others have felt and are are feeling just the same as me. I have found the hospital staff totally supportive and I've never felt rushed when talking to them, but it's different to be in touch with people who understand "from the inside" as it were.
I hope things improve for you, as I'm sure they will, and you will find a new "normal" which is not so very different from the old one. Olivia
I am sure that some of the rough feeling will be caused by the hydroxyurea. As soon as you stop that you will probably feel somewhat better. At risk of becoming a bore, because I keep saying this, please do drink lots of water. Surprisingly, this will help to eliminate water retention (don't ask me how but it does).
As others have said, your body will eventually adjust. You will also get to learn what works for you. It took me a long time to register that drinking enough water was essential. The problem is that, as you get more active and busy, you tend to forget to drink lots. I have also discovered that a daily dose of Fybogel and lansoprazole helps to keep my stomach in reasonable order. Not perfect but enough to allow me to lead a normal and active life and, at 70, I'll settle for that. I also find that the occasional banana helps to keep the cramps in order (contains pottasium I believe).
Best wishes, John
HI Jackie
My husband was dx with CML in April last year. It was a huge shock for us, and like you he had tests on weds and told on Thurs. He had to spend some time in the hospital as his white cell count was 487 and he was very unwell. However once he was more stable and back to work (nearly 3 months off) he has pretty much been back to normal. He has bouts of tireness and since they have had to increase his dose, diahorra. He does drink alot of water which helps, and makes sure he eat enough befor ehis tablet otherwise he is physically sick.
We have 2 young children and he is always out at the park with them and our dog or out on his bike. His pretty much in good shape. Do read what you can and do take the help you are offered, the first few weeks are tough but once it becomes part of your routine, you'll find it easier :)
Which hospital you under?
Lisa
Hi,
Again thanks for all the replies, it does help allot, just another quick question, in the leaflet they gave at hospital (I'm at the royal derby btw) it says I should inform them if I'm unwell including with a cold and sore throat. I have come down with both of these over the weekend but not severely. Do I tell them or shall I wait till my appointment on tuesday? It seems a bit of an over reaction to be ringing them with a few sniffles and sore throat but I'm not sure.
What do you reckon?
Hi,
I was diagnosed july 12th 2010 and so far the ride has been a bit bumpy! i was put on glivec and allupurinol but i had a reaction to the allupurinol which put me in hospital for 4 days with a rash and temperature! also the glivec is making me anaemic (it can do this at the start of treatment) so ive had a blood transfusion. one of my liver enzymes was too high from my blood test 2 weeks ago so im off the glivec now until it lowers again, i am waiting to restart glivec when my liver enzyme normalises (predicted in 2 days time). If it goes up again then they know its definitley the glivec thats doing it and they will try me on something different.
Thats my story so far - Im hoping to get into a routine soon but the first 6 weeks has been a bit of a rollercoaster!
I cant really put my finger on any particular side effects on my short time on glivec apart from going to the toilet more often.
Take care
2 weeks ago my ALT liver enzyme was 687, now its on about 100. normal is between 0 and 45. My doctor is not concerned and its not unusual for this enzyme to go up to 1000 if your ill etc. Also for info my next door neighbour is a doctor and he went out on the lash and the following day his ALT was 300 !! - he should know better!
I was diagnosed in April 2007. The local onc didn't tell me about Glivec and the CML booklet they gave me barely mentioned it. Consequently, I was left for two weeks thinking that's it - three years and out. I wasn't given hydroxyurea - just straight onto Glivec.
The first year was not easy. I had most of the usual side effects plus some nasties due to other unrelated problems. However, after the first year, it got easier and now the Glivec side effects are minor. I live a fairly normal and active life, although I do tire more easily. Blood tests are now reduced to every four months and I haven't had a BMB for over two years. The message is that it will probably get better.
I found that taking my Glivec 400mg in two halves, morning and evening after food, made an enormous difference and my PCR results remain very good at 0.002%. That, plus a good GP who helped me to reduce the side effects as they arose.
I understand that in most cases Glivec has obviated the need for transplants. There are many on here with long experience of Glivec and I suspect they will also reassure you.
John
Hi there,
I was dx'd this time last year, initially it was a huge shock,and I had the same side effects, the sore legs were the worst, but now I am almost back to normal, my blood levels are that of a 'healthy' person, when I changed oncologists the new one said that by looking at me and the blood tests at the time, she would say I was perfectly healthy, it was good to hear. Determination is half this battle, When I was dx'd I swore I would get better, and to celebrate I would go for a long motorcycle ride, well, in March this year I did a 4000km trip through Namibia (I live in South Africa), no hassles at all, I have also just returned from a 4000km trip around Zimbabwe, also by bike, In December I plan on going to Malawi by bike...I refuse to let CML dominate my life, it will work around me....My daily regime is fairly normal apart from my 400mg Gleevec in the morning after a hearty breakfast, my diet is normal and I am perfectly able to cope with a normal day's work, (my works is fairly physical) when I was dx'd I could barely do a half day's work, I would sleep the rest of the day, riding by bike to the doctor was a mission....On our recent trip to Zimbabwe we did 950km the first day...goes to show, there is always light at the end of the tunnel....and I recently turned 50...
I also had huge support from this forum, there is a fantastic bunch of people here.
When I as dx last nov, I took off till xmas just to put a good health regime in place and slowy get my head around all I needed to know. Although I did get most of the side effects to start ... cramps, rashes, very dry skin, aching joints, I did find that I was able to renew my work (a bit more gently) and although I now get very tired, am managing to continue most of my yoga classes.
It might be good just to give yourself a few weeks to adjust and hopefully you will find Gleevec pretty manageable.
All the best
Beth
I had very similar thoughts - but, like the majority of people, Glivec has done wonders and I have got used to the side effects (which have subsided and in my case relatively minor). And yes it is true that a transplant is unlikely for most people. you have other good options before that even if Glivec does not work as well as it might.
Give yourself some time to get used to living with it and taking the meds - many people have been for 10 years or more and gradually you will find it is something that is just there and hopefully has little effect on your daily life. In the first few months you will be monitored very closely and have frequent blood tests to make sure things settle down ok and if they do, the effect on your life will diminsh. I took a couple of weeks out, and then went back on slightly reduced hours but a year on I am working full time and apart from three monthly hospital visits, it does not really affect my daily life. Small side effects in my case which I can deal with. It varies but that is pretty common.
Good luck and have faith.