My name is Jeanette and I was diagnosed with CML in December 2008. I began treatment on glivec on January 15. I'm very new to all this and discovered this forum while browsing for CML info. It seemed like an excellent forum with intelligent discussion. Though I live in Australia, I thought I would join and contribute when I can. I am responding well so far and my bloods have stabilised and returned to 'normal'. I will be having my first PCR and FISH test next week so we will see what that brings. I live in a regional city called Rockhampton in Queensland and see my haemotologist once each month when he flies in from Brisbane. I feel well generally though have been dealing with Glivec side effects. They seem to come and go and change as well, however I am very grateful that a treatment is available. I guess I am still in shock at my diagnosis as are my family and friends, but I can tell from your discussions that all of you have gone through similar feelings. I have found your discussions very helpful and it has boosted my confidence which took a battering initially. Keep talking as new patients like me need all the info we can get.
Regards
Jeanette
You are here
Introducing Myself to the Forum
Hi Jeanette,
First, I am sorry about your recent diagnosis and truly understand the apprehension you feel very early and very quickly. You've found a great place to share your concerns and even receive some answers/suggestions that may well put you at ease.
This place has helped me for sure. My son (11 y/o) was dx'd in May 2008. He's on Gleevec and doing well so far.
I also appreciate that the side effects take some time to get used to. Many people adjust over time. And there are new medication options if the side effects become intolerable. For my son, it has taken some time to adjust. It seems that for him some of the side effects have lessened over time. Others, he has just begun to tolerate.
Many cml patient experiences are different. You do need some time to adjust to just about everything.
From what I've learned, cml can be very manageable. The treatments today have remarkably improved from the earlier years.
While this site is based in the UK, there are many people here from all over the world. My family is in the USA. I actually learned about my son's present cml doctor by reading so much of the information provided on this site.
Don't be afraid to ask any question. Everyone here understands. And so many are willing to share their experiences. It's very comforting.
Best wishes to you and I hope you have continued success with treatment.
Regards,
Tracey
Dear Jeanette,
I am sorry you have to deal with a diagnosis of CML but can reassure you that you will find support here on this forum and also find links to other CML forums that are equally informative and supportive.
As your diagnosis was so recent I understand you must be very worried, but please do ask questions of us, about anything that worries you or those close to you. This forum has existed since April 2000 and there is quite a lot of information and experience that you can tap in to here.
Imatinib/Glivec is very effective at controlling CML and the majority of newly diagnosed patients respond very well, seeing their ph+ cell population reduce steadily over the first 3 to 6 months. (There are patients who take longer - up to 12 or even 18 months)
There are also 2 '2nd generation drugs' similar to imatinib (a class of drug called Tyrosine Kinase Inhibitors- TKI's) that are also now available for the small number of patients that do not respond to and/or find the side effects of imatinib hard to cope with.
These two newer drugs are called dasatinib/Sprycel (BMS) and nilotinib/Tasigna (Novartis) respectively.
There are a few members of this forum who are on one or other of these alternative drugs.
Another drug called Bosutinib (Wyeth) is also in phase 11/111 trials in some regions (mainly USA,Europe), so the outlook for CML patients is good especially when compared to therapy available for other rare cancers.
There is every reason to stay strong, be positive and be well,
Sandy
I already feel a part of a group of people facing a common problem. My family has been very supportive but it is great to communicate with other CML patients. I haven't actually met any others in the area I live in. Thanks for your words of encouragement and I will be sure to keep reading this forum for news of you all.
Jeanette
Hi Jeanette,
My son also has CML (he is 3 years old and unfortunately not responding too well on Glivec). We are also in Australia and I thought you may be interested in another CML forum that is mainly Australian based. The Leukaemia Foundation forum also hold monthly CML telephone conferences with guest speakers joining some of them.
It is great to hear you have a supportive family helping you through. Best wishes with your results.
Love Michelle
Welcome to this forum Janette
I live in Perth, Western Australia (Hi to Michelle too!!)
I have found the information that is provided by Sandy and all others not only useful but so very supportive. In the first year of CML having the condition and side effects from glivec or other drugs takes quite alot of management. Before you know it - you will be just "living with" CML and not "living it".
Your levels are coming down slowly - great sign and glivec seems to be doing its great job.
There are quite a few people in Qld with CML
Any questions do not hesitate to post
If you wish to speak to someone in Australia do not hesitate to contact by email -
Keep Well
Sue (Aussie)
Hi Sandy,
I'm doing great. I still have some ups and downs with the GVHD, but am enjoying life to the fullest. I just got back the results for my BMB, PBPCR, PET, Chimerism, and bone density test. All the BCR/ABL testing was undetectable. Chimerism revealed that I am still my sister, 100% (XX), and bone density is good, slightly osteopenic but I'm working on that.
I had a little problem when I stopped all the steroids. My Adrenal glands decided they didn't want to work by themselves anymore (they got lazy) so I was cortisol deficient ( I was 3, range 4 - 22) at an 8AM testing. I started hydrocort (primarily used for addisons' disease to treat adrenal insufficiency). It has helped me tremendously so now I'm interested in how we are going to keep the adrenal glands working without the drug??
I am still undergoing photopheresis treatment -- 10 months now. It has helped my liver, all enzymes have returned to normal and I am off all steroids (except for hydrocort & entrocort). It hasn't done much for the eyes, mouth, or skin. We'll go another two months and re-evaluate.
I'm still taking 80mg of Sprycel as a preventive measure. I don't know if there are any plans to stop it. I've exchanged emails with Dr Talpaz and he is on the fence with this one. He said if I hadn't been in blast crisis three different times, he would be comfortable in recommending that I stop and see what happens, but???
It will be five years since transplant this October 5th. I will be returning to MDAnderson for a five year follow-up and re-baseline. I also have to return to the National Institute of Health (NIH) for a re-baseling. They have me entered in a 10 year study to determine why some people survive transplant and others don't, when the disease load was similar at transplant -- a lot of variables here, they are trying to work through them all. Lots of questions and testing???
I'm sorry I got a little wordy but it's been awhile since I've given you an update.
How are you doing? You should be very proud of this site. It has lots of information and well moderated.
Blessings,
Don
Hi Don,
thanks so much for your update... and don't worry about wordiness as I really appreciate lots of detail.
It's great to hear that you are so well and have overcome a lot of the post transplant problems. The fact that you have survived 3 blast crises is uplifting news for a lot of us. I know it has been a challenge at times, but you have such a positive attitude and I am wondering if this is one of the 'requirements' of surviving a transplant... or indeed any life threatening disease or procedure? Maybe that 10 year study you mention should factor this in?
Do you get side effects from 80 mg of Sprycel? But I imagine the extra insurance of Sprycel is comforting.
It great that you are still 100% sister cells... although by now I am sure those donor stem cells are unique to you. I used to think of mine as my brothers but I have now come to regard them as mine and mine alone... although if he ever needed a transplant at least I could donate some stem cells back and they would love him too? I must ask my doctor this question.
I will be attending a CML meeting in June at which Dr. Talpaz is speaking... if you have any further questions for him then let me know and I will ask ;o)
As for me... yes I am still doing great. We share our transplant date I think? or at least the same month. Mine was also just over five years ago- October 20th 2003.
It took me some time to reach negative but I have been PCRU since the final (4th) DLI did its magic work, which is now well over 2 years ago.
The only downside is that I lost my doctor to some lucky Spanish CML patients. He is now working in Pamplona, northern Spain. Great for him. However I have another really good new doctor at Hammersmith and we get on very well so I am more than pleased. Life throws up many changes and it's always best if you see the positive....
Its great to hear from you Don... I hope your adrenal glands finally realise that exercise is good for all of us and wake up to do some work.
Thanks for your comments about the site... I really appreciate your support and feedback.
My best to you and your family as always,
Sandy
Hi Sandy,
Thanks for all the kind comments. The Sprycel causes very few side-effects for me, so it's not such a big deal to continue.
Healing thoughts your way,
Don
Just want to thank you all for welcoming me and being so supportive. I see my specialist on the 12th of May and will know my 3 mthly response. I guess that must seem a long time ago for long term glivec users but this is all very new to me. Must admit being slightly overwhelmed by the medical information, abbreviations and what it all means. Trying to read as much as possible but a lot of it goes over my head. Will wait to hear what the doctor says and hope for the best. Cheers to all!
Jeanette
Hello my name is Christine and I was diagnosed a couple of weeks ago and I think I and still in shock. I am 60 years old but very young at heart and never thought this would happen to me after breast cancer three years ago
I am scared about the future.
I started on imatinib last week and already have felt nauseous after meals and have had bone pain for the last three days in my upper legs and upper arms. I am hoping these will go, having read other people's experiences.
I have my first blood tests booked for 15th July and a follow up with specialist a couple of days later.
I am so glad that I have found this site as I felt so alone.
I am married, have one daughter, three wonderful grandchildren, and i want to be alive and well for them.
Thank you for being there.
Hi Christine
Welcome to the group. I think most of us were in shock when we were diagnosed but the more you learn about it the easier it seems and this site is great for information and support. The bone pains will wear off after a while, sometimes it helps to think that the pain means it is working! Where are you being treated?
K
Hi Christine,
Try to experiment with how you take the pill - it can help with the nausea. Take them at the same time of day, of course, but you might find that taking the pill before or after the meal can make the difference. For me, I found taking it half-way through a meal with plenty of water really helped and I rarely felt nauseous this way. So, play around with before / during / after meals and with / without a big glass of water - you may find a way that can suit you.
As for bone pain, I had this too. I guess it's different for everyone, but mine were very painful and did not go away. So, we switched me to another TKI and now the pain is gone. So, even in the worst cases it is temporary. With you, either it will go of its own accord of you can look into changing drugs like I did.
I switched to dasatinib (rather than nilotinib as would be standard) because I found the nilotinib dosing schedule too cumbersome. I'm 34, and would find it hard to regiment my eating habits that strongly, especially because my job requires me to be fairly flexible with eating times.
David.
Hi Christine,
I would just like to join with David and Karen in their comments and welcome to this forum. You are not alone, although its hard to realise at first. When I was diagnosed in 1998, it was an incredible shock but pleased be reassured, there are many of us 'out there' both on and off the web- and that is because for the vast majority of CML patients diagnosed in chronic phase, the drugs actually work! In the initial weeks and months you will suffer the most common side effects of imatinib- i.e nausea and joint/muscle aches etc. David has given you good advise about taking the drug with meals- whichever suits you best, for me it was best with dinner which was the largest meal of the day- and with plenty of water. Again I prefer sparkling water and you can mix it with fruit juice if you do not like to drink plain tap water.
Things will settle down and you will begin to feel less worried. I do feel for you though as this is your second diagnosis of a serious disease- but take heart at the fact that there are a lot of people 'out there' that have survived CML in the long term thanks to TKI therapy.
Along with Karen I am curious to know where your treatment centre is. Please feel free to ask as many questions as you want. This forum is fairly disease specific and those that post are knowledgeable about the various TKI drugs and the various tests you will go through in the coming moths.
In November there will be a UK CML Patient and Carer day- this year it will be in Oxford. It is a great day to meet others in 'the same life-boat' which always helps. Look out for information on here nearer the date.
Best wishes,
Sandy
Hi Christine, welcome to the forum. You will find lots of very helpful info on here. You are not alone, there are lots of us 'out there' I did not get bone pain on Imatinib, but I did get the nausea. For me, taking it after a large meal really helped and I took it with the evening meal as I was usually quite drowsy and cold after too. I think the more you can eat with it the better it is to tolerate, and after a while the nausea will settle a bit. Also if you take it in the evening you can go to sleep and sleep off the worst of it. Hope it all goes well at your check up and you will soon be feeling a lot better. CML is very treatable and nearly all respond very well and go on to live normal lives. I totally understand about the children and grandchildren, exactly the same here, they were my main worry at diagnosis. It was horrible telling them, but now a year on we are pretty much back to normal and hardly mention it anymore : )
Hello again . Firstly thank you to Sandy, Karen and David for posting a reply to me. I can't tell you how much better I feel knowing there are other people who have been through this and that I can ask questions whenever I want.
I am being treated in Poole, Dorset . I was delighted when my specialist called me this morning to ask how I was getting on with the imatinib as I could tell him about the pains and nausea and be assured that this was 'normal'.
I will definitely try taking the pill at different times in the mornings. I am not a water fan, but will try the sparkling.as suggested thank you.
My nurse specialist has just called me too. Obviously no one can tell me when or how long I will have these pains but now I know I can take some painkillers hopefully they will improve.
I will certainly look out for info on the CML day, Oxford isn't that far for me!
Heartfelt thanks again and best wishes to you all.
Hi, it was odd that you mentioned being cold as I have been feeling very cold but didn't even think it could be the drug. My feet have been freezing and even with the glorious weather over the week end I was still chilly. I am going to try taking it at night as it makes sense to 'sleep it off' as you say. Thank you for taking the time to reply to me, I really do appreciate it. I know it is early days as yet just two weeks, but I am hoping that soon I will be as positive and helpful as you have all been to me.
I used to be so cold that last summer I remember being on holiday in a caravan 6 weeks into diagnosis, and spent every evening under a quilt feeling sick and frozen! If you still suffer when the weather turns colder, try an electric blanket, it's the best thing I ever bought! Things have improved a lot since then so don't worry, you will feel better soon too.
Hi again Christine,
If you are taking imatinib in the mornings, am I right to assume that it is then not with a big meal? Maybe you should sync up taking your pill with whatever is usually your biggest meal - lunch or dinner - and stick to taking it at that meal? The more food you take with it, the easier it is. I know if I took mine with just a light breakfast I would be feeling really pukey pretty quickly. At very least, take lots of water - I bet you're even less of a nausea fan than a fan of drinking water! Maybe try some fruit cordial to add some flavour.
What kind of painkillers are you taking? Have you discussed them with your doctor? Things like paracetemol shouldn't be taken too often as they are broken down by the liver (as is imatinib) which can overload it a little bit if taken too often.
David
Hi. I am going to change from taking my imatinib from mornings to evenings. Does anyone know if I should leave tomorrow's pill to tomorrow evening or take it tonight ?
As its too late to ask the nurse specialist so I wondered if anyone else had done this and how.
Thanks again, Christine
Hi Christine,
I spoke to my doctor about switching the time I took my pills (I ended up not changing the time). They said:
- You can switch in one day (i.e. no need to stagger the change by a few hours a day over a few days)
- You should still take 1 pill on each day, no more and no less.
- Do not skip a day to change your pill time and you should not take two pills on the same day to facilitate the switch
So, if you are currently taking mornings, e.g. at 8am and you want to switch to 8pm, do the following:
- On day one (today?), take your pill as normal at 8am (in the morning)
- On day two, take your pill at 8pm (in the evening)
- Now you are on your new schedule, so continue to take your pill at 8pm (in the evening)
David.
Thanks David, that information is so useful. As I haven't taken the pill yet this morning. (I was waiting to hear from my spec nurse), I will take yesterday as day one and take today's pill this evening with my main meal and see if that improves the nausea.
Thanks again for the reply, I feel so much better knowing i can contact other people with CML.
Hello Christine
I'm another 60+, have had CML for nearly 4 years now. It does take time to get over the shock of the diagnosis - and there is a small part of me that still doesn't fully believe it as I've never felt ill. However, I do feel the cold. Cold, and fatigue, are the worst side-effects for me nowadays. I do still get cramps, but they are not nearly as frequent or as bad as they were at first. In a way, they prove that imatinib is doing its job!
Good luck
Olivia
Hello Olivia, thank you for our post. I never saw this one coming at all and it has caught my husband and I off guard completely. I have been saying for ages that 'I didn't feel well' but apart from fatigue, I didn't know why. Still at least thanks to my very vigilant breast cancer nurse specialist insisting on blood tests, they have found this early.it is hard to believe at this early stage that I will be ok, but I will get there, just as soon as I start feeling less tired, nauseous and the bone pains stop. I know I am luckier than most to be diagnosed early.