One for the ladies maybe - I've been expeincing far more erratic and painful periods over the past few years. I've been on Glivec for 7 years now. I take lots of poaracetamol and never thought about it but i spoke to my consultant at Barts a couple of weeks ago who said that heavy periods were a side effect and also that i should not be taking paracetamol - does not go well with Glivec ...
has anyone else been told either of these things? The paracetamol has not affected the glivec as it's worked very well for me.
vicki
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Paracetamol and periods
susan dickerson Hi Vicki, Sorry you are having these problems and at least your consultant says this is a side effect of gleevic/cml where as my consultant dismissed this. I have had cml for 9 years and been on gleevic for 6 years which is when my problems started with flooding and really bad period pains and yes I have had to take the parecetamols but was told no more than 4 per day and not often, so I tried ibruferon even though I do have asthma because they are anti inflametary they seem to help the pain. I had a mirena coil for 5 years which helped a little and once taken out problems were worse than ever so I have been back and forth to the doctors and the gyne department for the last 12 months and in February just had day surgery called Novasure procedure which I am still in early days of recovery and hope it has done the trick (the Novasure is only suitable for any not wanting to get pregnant and being 52 mother of 4 and grandma to 2 I dont think I'LL be thinking of pregnancy again. I have also started taking high strength evening primrose oil tablets and flaxseed oil, I use lavender oil in my bath and find it also helps if I massage it onto my tummy if I have a lot of pain, hope some of this helps and I do wish more ladies would come forward who are having these problems and try to get all our cml consultants to take notice that we are having these problems sue d
Vicki
600mg glivec dose
My suggestion is to get yourself a really good gynno who will
share care your health with your CML specialist.
I and many women have your experience of erratic and very heavy periods.
My experience - within 4 months on glivec became a very heavy bleeder and clotting of blood , periods were becoming a shorter time span or intervals until the next period, until I was only having a week between each period to the 1st year on glivec.
Became aneamic - was having regular iron infusions and hbg count was erractic.
Then had a bleed-out whereby lost most of my blood - when I had another period - rushed to my treating hospital and had a radical hysterectomy. Marina Coils etc were spoken about but at the end of the day in my situation medicos and my CML specialist thought it was just too dangerous.
I was born under a lucky bushel as I had no organ damage from the bleed-out, heart, kidneys, liver, Ok, did not have a heart attack or stroke. (Had about 1/2 leg of blood left in me apparently).
Taken off glivec for 14 days - with no problems.
Since that time (April 08) - Novartis has added hormones as part of the side effect of glivec in their leaflets.
As suggested
Find yourself a good gyno
Have an management plan in place in case you have to be hospitalised for any reason
Diarise your periods - type of bleeding patters, how long, interval and if like many lower stomach pain and give this to your specialist each visit along with any other side effects.
Paracetamol - Take your own doctors advise
However I was advised not to take any at all.
I remember using heat packs
For me there is a definetly a before hysterectomy and after hysterectomy experince with glivec side effects
Heavy bleeding is not something to take lightly.
My example I may add is an extreme of what can happen.
Take care and thinking of you
Hi Vicky, Becky may daughter (16) had very heavy periods after starting on Glivec. Her consultant put her on Northisterone, these stop her periods fully. She does have very bad cramps in her stomach but no bleeding now. She also had very bad bleeding. I emailed Dr Druker about pain relief as I was confused about what Becky could take, he said Ibuprofen could be taken as long as platelet count is over 100,000. Paracetomol is okay as long as your liver enzymes are normal and you do not take over 2 grams per day. Hope this helps, Dawn xxx