As Christine's post was tagged on to an only thread from 2009 it has become rather confusing and unwieldy with each new post. I have therefore started a new one with all the latest 2013 posts copied here. Remember you can start a new discussion thread or post by clicking on the box at the top of this page. It keeps each subject current and up to date.
Thanks, Sandy
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Newly diagnosed
Submitted by Christine Wilson on Sun, 30/06/2013 - 21:55.
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.
newly diagnosed
Submitted by gizmos mum on Mon, 01/07/2013 - 14:35.
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 : )
When to change
Submitted by Christine Wilson on Mon, 01/07/2013 - 19:07.
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
How to change pill-time
Submitted by davidpfitz on Mon, 01/07/2013 - 23:07.
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.
Switch
Submitted by Christine Wilson on Tue, 02/07/2013 - 09:09.
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.
Cold
Submitted by Christine Wilson on Mon, 01/07/2013 - 15:06.
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.
Cold
Submitted by gizmos mum on Mon, 01/07/2013 - 15:25.
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.
No need to feel alone
Submitted by sandy craine on Mon, 01/07/2013 - 12:03.
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
Thank you
Submitted by Christine Wilson on Mon, 01/07/2013 - 14:59.
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.
Maybe change meal?
Submitted by davidpfitz on Mon, 01/07/2013 - 17:19.
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
Paracetamol
Submitted by Christine Wilson on Tue, 02/07/2013 - 09:04.
Hi David, the doctors said it was ok to take the paracetamol, but didn't mention any liver problems. Can you tell me a little more about what the painkillers could do please, as I would rather not be taking something that could cause more harm. What painkillers would you suggest please.?
Nausea
Submitted by davidpfitz on Mon, 01/07/2013 - 10:20.
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.
Newly diagnosed
Submitted by karen on Mon, 01/07/2013 - 07:28.
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
Paracetemol
Submitted by karen on Tue, 02/07/2013 - 09:38.
Paracetemol is fine to take but it is important not to use it long term or to take more than the recommended dose as it can have issues. All the drugs we take are processed by the liver so you have to ensure you don't 'overload' it.
Cold
Submitted by Olivia on Tue, 02/07/2013 - 09:13.
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
Good to meet you
Submitted by Christine Wilson on Tue, 02/07/2013 - 12:15.
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.