I was recently diagnosed with CML. I have always been sensitive to medications. They put me on Gleevix and my gums have been splitting open. They told me I must stay on it. I faint as well. Besides a nasty tasting "mouth wash" is there anything else they can do to help????? Also does anyone deal with a lot of pain with CML? I am thankful that I came across this support group.
You are here
new and discouraged
Hi,
Sorry to hear your news - but I am pleased you found this place, which is an excellent place to find advice and ask questions. Over the next few weeks you'll have many questions, and people here will be able to help you find some answers.
The medicine you are on is called Gleevec, not Gleevix. Gleevec is the brand name for a drug called imatinib.
Very sore gums on new medicine are generally something to keep an eye on - it can be an early sign of Stevens Johnson syndrome, which can be quite serious. It's very unlikely that this is happening, so please don't be alarmed - but you do need to be careful. Have you noticed any more spots, or rashes on any other parts of your body? Do your gums feel swollen, or are there any breaks in the surface of the gums?
Have they given you any other medication to take? Allopurinol maybe?
You'll find that many people do have pains with CML, but nearly always people find ways to manage it well - or when that is not possible, they change to another medication. There are a few available to treat CML, whereas a few years ago imatinib / Gleevec was the only option.
David.
Hi,
So sorry to read that you are suffering side effects. You do not say when you were diagnosed but I assume it was quite recently- within 3 months?. Side effects from imatinib/Glivec (European spelling) do lessen over the first few months, although some people do show intolerance over time and might need to change to one of the other 2nd generation TKIs that are now available, depending on where you live.
You might be suffering from symptoms of immunosuppression- either from imatinib (Glivec/Gleevec) or from the consequence of the disease itself. I sounds like the splitting gums might be caused by some kind of infection or inflammation which could be from low white cells due to imatinib doing what it is supposed to do- at least in the initial stages- and that is to get rid of the leukaemic white cells. After some months your marrow will recover its production of normal white cells that will restore your normal immune response to infection etc.
If the mouthwash is really causing you problems then why not tell your doctor so they can either explain why you need to carry on with it and for who long, or, prescribe a less harsh (non alcohol based) one.
I have found natural sea salt dissolved in warm water to be equally as effective as a mouth wash for minor irritations and infections. But do talk to your doctor about this effect.
Regarding pain... this is a common effect of imatinib and usually for most, will ease as time goes on. If the level of pain is unusual or uncommon then again your doctor should be able to suggest a way of managing the effect, or a change to another TKI therapy such as nilotinib, dasatinib or bosutinib (these last 2 are available through the Cancer Drug Fund in England).
Let us know how you get on.
Sandy
About 2 years ago I developed what's called geographic tongue which is extremely painful and also very sensitive.
I was put on a course of steroid mouth was and tablets and that cleared it up.
I don't know where your are seen but its always useful to be seen at a Center of excellence where they see many more cases of CML rather that the local hospital where perhaps you are only one of a handful of patients with CML. you have not mentioned you where you are seen and what results you have had so far.
I have joint pain and have tried changing TKI's to find one with less side effects and an on nilotonib which for me has the least side effects. But I do control the paing with ibuprofen and sometimes tramadol when it's really bad. But I'm intolerants to the drugs but the do works for me. Latest PCR 0.02 so I'm quite happy with that.
Hello, I am also newly diagnosed within the last month and just wanted to say what a fantastic site this is and I have received so much reassurance and support from other CML ers.
I would definitely heed the advice from here, they really do seem to know so much.
Wishing you all the very best and hope that your symptons reduce very soon. I suffered with so much bone pain a couple of weeks ago I didn't know what to do, but believe me, it has now subsided completely. I am still extremely tired all of the time, but hopefully that will also disappear very soon.
Good luck
Christine
Hi Christine,
I'm so pleased to hear the bone pain has gone - that's awesome! For me it just wouldn't go, so I switched to dasatinib and that made it go away. The main thing is that it goes, and the treatment is working!
The tiredness you are getting now must have a huge emotional element to it at the moment, so it's bound to get better.
Hope you're doing well,
David.