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Recently diagnosed and started on imatinib

Hi all, I was diagnosed a week ago at Worcetser Royal Hospital. I had been unwell for some time and the diagnosis was picked up by chance by a blood test. Obviously as with everybody who is diagnosed, this came as a massive shock and I feel numb about the whole thing and I am struggling to come to terms with it. I am 36 and probably most people will agree, they never expect something like this would happen to them.

I was started on imatinib last Friday, and two days ago I started getting pains in my left leg, and also my jaw. The pains in my leg are my main concern. I know the meds can cause cramps, but the pain is more of a dull ache, and feels like it is coming from the bone rather than the muscle. I had the same pain about two weeks ago when I was waiting for my results, but at the time I was taking Hydroxycarbamide. I had one of the consultants check my leg over but they couldnt see any issues.

I was wondering if anybody else suffered with leg pain but it wasn't specifically cramps in the muscle. I have an appointment with my consultant tomorrow, but I feel people who have experienced the symptoms understand more about how you are feeling.

Mark

Hi Mark, and welcome to this exclusive club. I was diagnosed in September last year at 45. Like you had leg cramps after a few days which lasted a 5-6 days and in the last 2 were really quite painful ( not to bad though ) they then went and have not I am pleased to say returned. This is a very common side effect early on I gather. I tried Magnesium oil as was told it helped, don’t know if it did, also tried Tonic water, has quinine in, well worth a go, went as I say soon.

 

Mine was like yours more bone than muscle, guess it’s a good sign the drugs are doing something, so in many ways be pleased if that makes any sense as I felt it shown the drugs were doing something.

 

This site is great very helpful, after a few days / weeks you start to calm down, youtube is worth a look I found lots of info and doctors talking about the future and prognosis, and explaining well where you are and going, the future is very good for most. If you need feel free to contact me    ndeekes@onetel.com.

 

All the best   Nigel

 

First of all, welcome to the club!  We all have different problems, but this is a wonderful place to share them - you are not alone. 

When first diagnosed in Oct 09, I had the bone ache you talk about.  It didn't last for more than a few days, if I remember right, I think it's all about your body getting used to imatinib.  I was told that I could control it with painkillers - best to ask your doc what they recommend.  The cramps came a few days later, and I still have them from time to time, but are very much more manageable.  Just an annoyance, really.

Hope this helps a little - I know you will probably have all sorts of things to come to terms with, and a great deal to take in.  It is hard at first, but it does get easier over time.  Good luck!

Olivia

Mark

Welcome - you will I hope find lots of help, support and information on here and yes I agree, those who are going through, or have been through, what you are do understand your thoughts.

I know people report bone pain in imatinib especially at the outset, in addition to cramps.  All of these do tend to fade in the vast majority of people over time.  I don't know but I sometimes wonder whether the bone pain, which people also get as a result of having CML, in the early stages of treatment is somehow connected with the correction that TKIs like imatinib make to how the bone marrow is functioning.  The correction is pretty significant in the early stages so I wonder if there isn't a connection. That's a bit of speculation on my part, I hasten to add.

In my own case, and i've been on imatinib for nearly 3 years, I still get cramps in the hands, feet, neck and jaw, and occasionally pretty much anywhere I even slightly over stretch.  I do remember quite early on getting a cramp in my neck that lasted about a week: I thought I had cricked it - and as badly as I can ever remember doing - or something. It was only sometime afterwards that I realised it was a very long imatinib cramp! Fortunately, it did go away and now the ones I get are short and temporary.

Good luck. 

Richard

 

Hi Mark, 

Welcome to this forum and website. I do hope we are able to help you through the next few weeks and months - at least until you can make some sense of what has happened to you..... the typo in your original post might well have been 'un-imaginable'- when I was first diagnosed in 1998 that was the word that best described the experience.

Nevertheless..... you have been diagnosed with CML, a disease that is very well understood and for the majority is no longer life threatening/limiting, because of the last decades revolution in effective therapy- i.e. the advent of targeted therapies or TKIs (tyrosine kinase inhibitors)- imatinib, nilotinib and dasatinib (plus others in the pipeline).

 

All the above TKIs work on the same principal- they target the abnormal white cell exclusively, and by inhibiting the abnormal protein that governs the PH+ cell signaling mechanism (a 'fusion' tyrosine kinase called bcr/abl) and switching off the protein production,  they cause those kinds of abnormal cells to die (normal cells that do not have the PH chromosome are not affected). Thus the normal white cells are no longer crowed out and are able to increase to effective levels again.

 

They become the dominant population again over time. You will see the abnormal Ph+ cell population diminish over the next 3- 6 months.... the goal is to get them down do very low 'molecular levels' so that they are no longer able to disrupt the body's normal immune response. 

 

Imatinib side effects:

I too -and most others- experienced the bone pain/ache you describe. For me it lasted exactly 12 weeks and then suddenly disappeared. The intensity of the pain was high at first- at least for the first 8 weeks, but with lots of massage and heat packs it was manageable.

I was diagnosed in accelerated stage so maybe that is why I took longer than others to see this side effect disappear..... but please be assured it will for you too- probably a lot sooner.

 

The cramping effect seems to be particular to imatinib- rather than the 2nd generation TKIs nilotinib and dasatinib- I have never taken either of the newer drugs but someone else on this forum might be able to confirm whether the cramping side effect is just with imatinib.

 

I found magnesium to be very effective- and for joint aches and pains in general.... but you have to use it over the long term (at least 3-months before you feel the benefits). You can use the oil and/or take a supplement.

 

Heat packs are essential for dealing with the more seriously painful muscle cramps- I find the ones that can be heated in the microwave are invaluable- but a hot water bottle is a good option too.

 

Relaxation/massage is also helpful on many levels....... but that will take time and you need to deal with the shock of diagnosis first.

 

If you go to the Patient Power Video/You Tube page (menu on left)  you will find lots of video interviews with expert clinicians- I have also put a very good presentation at the top, from Carolyn Blasdel who is a very experienced CML nurse practioner. Her presentation covers lots of things to do with managing CML and the side effects from therapy. You might take some time out to watch at least that one.

Maybe its too soon for you to watch the others, at least until you get your head around CML and learn all the terminology.

 

Try to take things slowly and allow yourself and your family to understand what has happened and take time to adjust.

There is normal life after diagnosis with CML.... believe me. 

 

If you have any questions at all then do not hesitate to ask.  CML is a rare disease with an incidence of 1-1.5 per head of population, but there are many of us who have survived in the long term... I myself am 14 years on from initial diagnosis and  live an active and normal life.  

 

Take heart, things will not seem so bleak in a month or so.

 

Best wishes,

Sandy

Thank you to everyone for their kind words and helpful information.

It is a big relief to know that you are not on your own, and there are people out there who know exactly what you are going through. This site has been a great help and has already answered a lot of questions I had about this condition. There are so many different sites that have very scary and inaccurate information, which can be very damaging to somebody who is uneducated with this condition.

Once again thank you to everybody.

Regards Mark

Hi mark ,I two thought I was alone but fare from it,I was diagnosed 14th dec 2009.started imagining feb 2010 ,had pain top of legs for several weeks but it when't away after that ,do get cramp from time to time but nothing I can't handle.if you want to email me your very welcome .

Email: Mr_Fireworks@hotmail.com

All the best tony.

Welcome to the club.  I'm fairly new also ( dx in Oct 11 aged 40) and will say the first few weeks were a haze dealing with shock, bone marrow biop, blood tests ( and filtration in my case), decisions on whether to go on a trial or not etc. Hopefully you're feeling better about it all as the weeks go on  and you gain more undertstanding. Its good that you reached this site early on, I did and have to say it  was and is a lifeline. I'm also on Immatinib, had the odd cramp and nausea but not the bone pain - the great thing iabout here is there's lots of tips on managing side effects as everyone's experience something or other. Keep in touch and let us know how you're doing. Jo ;)

So sorry to be welcoming you here but as others have said this site is invaluable and I am so glad you found it.

I was diagnosed 12 months ago at 37 and it was such a shock, it has been a rocky road but I am doing well on Nilotinib and now just trying to 'iron out the creases' and make life more comfortable and normal.

i hope you do really well on Imatinib and your leg pain gets better. Give yourself loads of time.

take care

emma x

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?

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

HI Olivia,Thank you very much for your support and email. It very good to get support from someone who has the same illness .Many thanks ll keep you in touch by email .:-)!!!Take care

Hi all, I recently posted with regards to some pains I was having in my legs, which were side effects of the Imatinib. The pains became more and more severe after a couple of weeks of starting the tablet. It got to the point I couldn't walk or get up and down stairs properly. I was in constant pain, even painkillers didn't help. I was using crutches and wheelchairs to get around.

I decided enough was enough and contacted my consultant as it was unbearable. I was told to stop the Imatinib for a couple of days, then restart it on half a dose 200mg. The pains eased but never went away. After three days on half a dose I was told to start back on 400mg, which resulted in the severe pains coming back and I was unable to walk properly again. I was determined to get through this, so I perservered for two weeks, but it became unbearable and my life was a nightmare, as I have two young children who it was effecting.

I saw my consultant for a routine check up, who told me to stop medication for one and a half weeks. I restarted back on 200mg on saturday (14th). The pains have started to come back, and I am worried when I start back on 400mg I will be back to crutches again. My consultant told me that if I begin to suffer again that I should contact her, and she will stop the Imatinib and probably switch me to another TKI, but I am not sure this will happen.

Has anybody else been in a situation where they keep stop starting your meds, and also reducing the dose. I don't mind giving the meds a fair go, but I don't know whether what I am experiencing is not unusual, or is it more severe than most people. The whole situation is really taking it's toll and running me down.

Does anybody know whether I could make the decision myself to switch TKI's as I have had enough, or am I being to impatient.

Mark

Hi Mark,

I can't offer much by way of answering your questions except to tell you that I too suffer from leg pains. They are definately not as bad as yours though. I started Glivec in March. I get muscle pains, whch are quite sharp pains in my thighs and I also get bone pain in my shins. Although they are quite annoying/painful and do slow my walking, they are not bad enough to have me on crutches. I was hoping they would subside as time went on but no sign of it yet.

Sorry I can't be more help and I hope things get better for you.

Don

Hi Mark,

In answer to your question I dont think that you would be able to switch to Dasatinib/Nilotinib yet as you have only been on it a little while. My daughter was on Imatinib for about 2 years with bad side effects mainly cramping/nausea,sickness etc. I think your consultant may reduce your daily amount and see if that helps. She found warm baths helpful, also relax, hard I know!! Hope you start to feel better soon. Dawn x