You are here

New Thread for Christine's Newly diagnosed post from 30th June 2013

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

--------------------------------------------------------------------------------------------------------------------------------------------------------------------------------

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.

And welcome - as it were. You will find lots of help and tips on this forum and it looks to me as if you are experiencing things most of us have. I was diagnosed 4 years ago now - hard to believe so much time has passed - and am glad to say am doing very well, so much so that I hardly think about it (except of course to remember to take my imatinib every day...). From your questions and other thoughts on this thread, here are some of my own thoughts and observations:
nausea - experiment with when you take it. I definitely found the evenings better, and in my own case a little after my meal. It will still get you from time to time but gradually that fades. Some food definitely affects me - too much dairy close to my imatinib is no good. Pasta and/or rice (or other starch) is good... Also, I prefer to take my pill with diluted juice - I find a bit of a metallic taste with the imatinib that I don't like and the juice masks it!
cold - I defintely get chills and my skin feels very cold sometimes. I have to wear more layers than I used to but it's OK. Sometimes I resort to taking a hot shower to warm up!
pain relief - I was told ibuprofen (eg Nurofen) wasnt great because imatinib is hard on the stomach, as is ibuprofen. Equally, paracetemol is metabolised by the liver, as is imatinib. That sounds like a problem - but the answer I found is just to be a bit careful. I take either when I need them - preferably paracetmol as my main side effects are "gastro intestinal" and there doesn't seem to have been any effect on my liver. I drink rather less than I did mind you so maybe that's balanced a bit..
cramps - pretty much everyone gets them. Mine are not so bad now but they still happen. I can live with it. I didn't experience any bone pain but many do to begin with.

It will take time to get used to it all but most people do very well and live normal lives (more or less!) with the CML. It's very daunting to start with and you should definitely keep a keen eye on your progress in case you may need a switch - but be confident.

Richard

Hi Christine
Having read your posting I felt I had to reply. Other people have rightly said that we all recognise the shock a CML diagosis is and for you, coming after breast cancer, it must be that much more difficult. I was dx in Sept 2009 and have been taking Imatinib since then.This site is an absolute godsend as other CMLers are more familiar with the various side effects the drug can cause than haematologists. At least, that's what my experience has told me. It is so helpful to post about a new ( to you) side effect and to hear from others that you aren't alone. At the same time of my dx, my friend was dx with breast cancer and I felt lucky to have CML and Imatinib rather then the chemo she was enduring.
My research nurse said when I was dx that it's like having diabetes in that you take the tablet and, after the initial period when your body is learning to cope with it, life then goes on pretty much as normal.
Do feel you can ask anything - someone here will no doubt have shared the same experience.
Good luck on the 15th - it sounds as if the hospital after being very solicitous which is good.
Take care
Best wishes
Chrissie

Hello Chrissie and thanks for replying. I hope that after this initial period I will be like lots of other people on this forum, and living a normal life just taking the pill.
A the moment I am experiencing extreme bone pain in my legs and have been unable to really get out of bed since Sunday. My legs are so cold and even with heat pads etc, they don't seem to warm up. The pains increase about an hour after taking the pill and as I have now swapped to taking it with my main evening meal, I have had two nights of nt being able to sleep due to the pains. My bones feel as if they are being frozen, I don't know how else to explain it.
I have been taking paracetamol regularly and although this helps I still can't stand for more than a few minutes and sitting in a chair with my legs down is extremely painful.

I also am nauseous about 1/2 hour after taking it for a couple of hours.

I have only been taking the pill for 8 days and feel that maybe it is too early to go back to the specialist and tell him but this is having an effect on my life, as I haven't been able to go to work at all or do anything at home.

If you or anyone else has experienced this and found relief please let me know.
Best wishes Christine

Hi Christine,

When I was on imatinib, I had bad bone pain (it was the reason I came off it, in the end) which didn't go away. I am not sure how much the paracetemol helps you, but I was on 30-60mg of codeine 3 times a day and that really helped.

I gather that with most people the bone pains go away, but if they are really terrible perhaps you could talk to your doctor about a better painkiller? Another thing we tried was slow release tramadol for the night times.

Hi David, Thank you. I have spoken with the specialist this morning and he has recommend taking imatinib every other day until I see him in a couple of weeks and also to take paracetamol regularly. He has also prescribed some anti sickness tablets for me.
Hopefully I will be feeling better soon at least every other day .
I was caught early at wbc55 so thesis encouraging apparently.

That does sound early - was it just found on a routine screening? I was well into the 200s.

I hope all those things work for you over the next few days. If you onc is happy for you to take imatinib every two days, they must not be worried.

Hi Christine, I do hope your consultant is a specialist in CML? I note you are treated in Poole. I think Southhampton might have a specialist centre, but not sure.
Cutting the dose in half is not something that I have heard recommended by CML clinicians. You should check this with your doctor as 400mg is the recommended standard daily dose, so if you take this every other day you will be effectively cutting the dose to 200mg, which from all the research I have read of the years is not considered enough to be clinically effective.

Your bone pain seems pretty much the same that I experienced when I first started therapy with imatinib.
I 'suffered' quite a high level of pain for 12 weeks with little or no sleep and then - almost overnight- it stopped. This was a big relief and I know that this has happened to a lot of people. Try to hang in there, as they say.

White cell counts are very variable at diagnosis, some are extremely high but mine was only 17! as most of the abnormal cells were in my spleen rather than my blood, and my other symptoms pointed to the stage of disease I was in.

I do hope things resolve for you soon. Bone pain is to do with the drug actually doing its job and when your marrow normalises you will be able to better assess whether you can tolerate imatinib without it affecting your quality of life too much. If you do have problems tolerating imatinib- as with David's experience- there are other options as the 2nd generation TKIs are available, so your doctor will be able to advise you.

Sandy

Hi Christine

I just wanted to agree with Sandy that cutting the dose doesn't sound ideal to me. I understand that bone pain can be a symptom with all the TKIs initially and is related to how your bone marrow is adjusting to the therapy in the initial stages. Whatever you take early on therefore could have the same side effect in that regard. It's very early days and if the blood results are going in the right direction, I would say "hang on in there" as it should get better. Same with the nausea - I really had that for probably the first month, including being sick a couple of times (and REALLY sick..). However, that got loads better especially once I made sure I had a proper meal with some starchy stuff like rice, pasta or potatoes...

For what it's worth, my WBC was even less than Sandy's (but over 10!) - my platelets on the other hand were about 1400! (top of normal is 450 or so). Apparently I have an unusual form of CML (based on where the break in the chromosomes occurred). Anyway, my starting point at diagnosis was about 80%bcr/abl (and 16/20 positive by cytogenics). I was told that was good though as Sandy says, we are all different. In my case it was probably quite early (though my blood did show very early signs a couple of years before, apparently) - I had absolutely no symptoms and a routine blood test caught my CML.

Good luck and have faith.

Richard

Hi Sandy, thank you. I admit I was apprehensive about changing to bi-daily, as everything I have read and been told has said the opposite and tht it is crucial to take it regularly at the same time.
Perhaps I will persevere and stick with it, but as you know from experience it is hard to be in pain and not be able to do normal daily tasks.
I thought 55 was very early but obviously reading these posts it isn't. Mine was picked up by my breast cancer nurse who did in fact tell my GP back in October and again in April this year when I was finally referred to haematology.
Yes my bloods and marrow were sent to Southampton and also to Salisbury , but my specialist is very knowledgable, or so I have been told!

Hi Christine,
If I were you I would really try to stick with it, at least until the 12 week mark- then reassess. As Richard has also advised, reducing a dose to less that is clinically effective is a bit risky, no matter how 'early' your CML stage is. The issue is to keep you plasma levels of imatinib at around 1000 ng per ml. That is the optimal level for it to inhibit the PH+ cells, and at this first stage of treatment it is important.

I really do understand that to be in pain is not easy- but if you can possibly get through this initial period you will see the 'gain of that pain' ;o)

I would ask you specialist- who I am sure is knowledgeable- if he has read the ELNet recommendations for CML therapy and/or if he checked this strategy with a CML specialist at Southampton. I have never heard of this kind of advice being given to any patient.

Good luck,
Sandy

Hi Christine

Sorry to hear about your bone pain. That is one thing I have fortunately never had so I can't make any suggestions personally.
One thing I have found helps if I feel nauseous - or if I have had my main meal at lunchtime and need to take my tablet at 7.00pm and have no room for another meal- is that a small piece of cheddar cheese prevents the nausea. I take the cheese before taking the tablet. My haematologist said he has another CMLer who finds bread and butter eases post tablet nausea and that some people find the fat in cheese or butter helps prevent the nausea. It certainly works for me. We are all individuals and as time goes by find our own solutions to some side effects.
The other thing to mention is that the side effects seem to disappear as suddenly as they appear. Fingers crossed for you that the bone pain eases quickly.
I don't know if you are taking statins but I was and found I got really bad muscle cramps taking statins and imatinib. Whether this applies to bone pain I don't know but no doubt someone else here does.
Best wishes
Chrissie

Hi again, I just wanted to let you know that I have taken all of your advice and I am continuing to take imatinib every evening and not reducing the dose at all.
My bone pains have now changed to dull throbbing aches but at least I can stand, walk and sit for about 10 minutes each i which is a great improvement on last week.
I am taking the anti nausea tablets still before my main meal but will try to leave these off at some time soon.
I do find that my legs are worse about an hour after taking the pill, and this doesn't help with a good nights sleep but hopefully all thus will rectify itself very soon.
Thanks again for all the advice and kind words.
Christine

Hi Christine

Pleased you're sticking with the 400mg dose and that the pain seems to be slightly better. It will all be worthwhile once you see improvements in your blood tests.
In my thoughts
Chrissie

Hi Chrissie. The pains now are mainly concentrated around my knees and I am having trouble walking still, but at least it is lessening slowly, and hopefully next week my blood results will show improvement. I will keep you posted.
Best wishes to you too, how are you doing?
Christine

Hi Christine
I was dx in Sept 2009 and have been taking Imatinib 400mg since then. I have had a strange range of side effects over the years, but seeing my blood tests coming back showing mere residual left of CML gives one the incentive to carry on with the meds. I can report that as of the past few months I am side effect free which is wonderful, I feel very well and I seem to be holding MMR (Major Molecular Response).
There is light at the end of the tunnel
Best wishes for a good blood test and diminishing pain in your knees,
Chrissie