Specialist in CML + cramps

Sorry to hear about your issue with cramp. Mine became bearable after a few months, and now I am on 200mg imatinib per day it is not a significant issue.

If you look under the Patient Info tab at the top of the page, the second item is Specialist Centres. Click on that and you will see that there is a group in Oxford, and you can see the details. I believe the NHS give you the right to a second opinion - so ask.

My CML care (for the last 17 years) has been under consultants in Durham and Chester. Both of these are/were engaged with their regional centres - Newcastle for Durham, and Liverpool for Chester, and aspects of my case have over the years been discussed with Prof O'Brien in Newcastle and the now retired Prof Clarke in Liverpool. I would be surprised if similar support was not available from Oxford for the consultants in that region.

Happy new year,

And welcome to this group. I started supplementing with Magnesium Citrate 200mg all my cramps from taking medication disappeared. I would regularly get it in my feet and my hands on a very regular basis. I can honestly say I’ve not had any since taking the magnesium for almost 6 months.

I hope this helps in some way.

Alex

I had a hard time with cramp too at first
1. Magnesium will help and you're in right way. Ionic magnesium is nice but pricy, i use chelated magnesium from Doctors Best but i think any magnesium your body tolerates should work.
2. Light weight training 2-3 times a week. This is going to feel like it makes the cranp worse at first because weights will tend to make you cramp more. Take it easy, start light respect your limits and it helps.

It gets better!
Good luck 🤞

Hi David,

No I am not under Churchill but my hospital is linked to them.
I have no idea how to change consultant. I have asked Macmillan group and they have no idea at well.
I need to do some research about this.
In the meantime I wanted to have a private appointment in order to get an answer to all my question. Maybe I should write them here! You are all so knowledgeable while for me it is new, scary and overwhelming sometime.

Thank you
Francesca

Francesca, you could ask your GP if you can be referred to Chuchill and explain why. If they say no you are not any worse off.

Hi there,
I have have come to your posting late but perhaps could suggest a few things based on 17 years of taking imatinib.
Imatinib being targeted molecular therapy is slightly different from some forms of other chemotherapies in that the side effects are relatively mild -that is no consololation I know when one in the initial stages of taking the drug might experience new issues and also of some intensity.Basically according to our metabolisms we may experience different forms of side effects so there may be a a wide range of affects across the CML patient spectrum.
Musculo-skeletal issues are quite common and cramps in the hands ribs and legs are usual-some even report cramping of the tongue and throat.I found that daily stretching and other floor exercises or even on the chair help but in my experience most pysios do not really understand the type of night cramps that some of us experience.I found that stretching out a cramp like footballers do on the field of play was not possible and made it even more painful.
Have you tried using a topical application of magnesium oil (look on Amazon)and spray on to your hands or legs on a regular basis-but you need to do this over a period of time to gain any benefit.
The first six months I was affected by severe bone pains but it got better.Over time the cramps have eased but instead I have perhaps due to long term use of imatinib developed non diabetic peripheral neuropathy with a gradual loss of nerve endings in the lower legs and feet-so I cant sleep more than 3 hours at a time before having to get up and stretch and walk as numbness cramp and tingling takes over.
Rashes are common with imatinib.I have tried steroid creams on prescription but they dont solve the issue for me and long term they are reputed to lead to thinning of the skin.I use an Australian produced cream called Hopes Relief-Derma Lotion for Dry and Itchy Skin which is made of 3% Colloidal Oatmeal and 9 other natural products.It calms down the itching.It is available on Amazon but is not cheap.
Imatinib can give constant faecal looseness and long term lead to diverticular issues;it can lead to occular issues and swollen tissues around the eyes and eye bleeds;it can lead to heart irregularities such as atrial fibrilation (AFIB) /irregular rhythms.
I found a brilliant book by Professor Robert Thomas called Lifestyle after Cancer focussing on lifestyle,diet exercise etc-look on Amazon for a used version.
Finally check your Vit D levels and calcium levels as these can impact skeletal issues.
I would not expect any GP in UK to have any real idea how to manage imatinib as they rarely see CML patients -700 or so newly diagnosed CML patients per annum.Nor would I expect all haematologists to be au fait with imatiib side effects as often they only have a handful on their books unless they work at Hammersmith or Royal Marsden or another important UK regional centre.
I have found this site to be very useful in exchanging ideas on how to manage side effects from imatinib or the other tyrosine kinase inhibitors-many of us will not qualify for treatment free remission or discontinuation so will be on these very effective pills for the rest of our lives.
Food for thought -on diagnosis my initial specialist said to me " Now we have Glivec (imatinib) this one (CML) probably wont get you but for sure something else will"
Best wishes
John

Hi John,

Apologies I missed your message.
Thank you for all the information.
My itchness has became really severe and for the past couple of months I have tried 2 different type of steroid cream.
They also halved the dose of imatinib to 200mg which felt so good. No more cramps or numbness.
The last steroid cream stopped my itchness so I had to increase the imatinib to 300mg. It is now 3 weeks since increasing the dosage and for the past week I started itching again and I also develop some sort of rash.
I went to see the hematologist today and it looks like I will need to change drug. He is going to consult a cml specialist and then advise me on Thursday.
Most likely it will be desatinib.
What I worry right now is to be sick again with a new drug. It took me few months to tolerate imatinib and yes, lot of side effects but I had learned to deal with some of them.
Thank you for any advise you might have.

Hi Francesca

It would help us understand what the consultant is recommending if you can post your BCR ABL results. Did that increase on 200mg of imatinib? I have been stable and undetectable on 200mg imatinob for several years, but there are some people for whom that did not work.

Also many people who have changed to dasatinib from imatinib have found significant improvement in side effects.

It's good your haematologist is consullting with an expert. Please let us know what happens.

Hi Francesca,

In the very early days (around 2008) I had got to BCR ABL around 0.6% but was very neutropaenic on 400mg Imatinib, so I went to 200mg per day. The BCR ABL level stayed the same for 6 months so I went back to 400mg when the doctor believed that my WBC was low but I was fine. I went back to 400 mg and in a further 6 months I got to MMR below 0.1%. In retrospect and knowing what I know now I should have stayed on 400mg for another year and reduced back to 200mg, but we know more now.

Hi Sue,
the nausea is what i am worry about. I had it for more than 4 months with the imatinib and I am worry it will be the same with this other drug.
Did you have any side effects when you switched to other drugs?
Thank you