Guest guest Posted April 10, 2008 Report Share Posted April 10, 2008 Good Morning All Since joining the group I have been asking your experience with glivec and periods as I was experiencing terrible periods which I never had prior to CML. I was not sure if CML - Glivec - Age related - or abit of everything. Note: Prior to being diagnosed - I thought I was nearing rmenopause as I had only slight discharge and not a period at all. On diagnosis of CML - over a few months - actual periods started again.My periods having been very clotty and not hormonal type clots. Very irregular and periods starting to be longer of a time period. So thought it maybe related to the glivec in the main. Last week - what an adventure. Had a major bleed that left me with a very very low heboglobin (spelling) hgb of 44 Raced to hospital after collapsing and still blood could not be stopped When stablised after many more bags of blood it was decided to give me a radical hysterectomy. This has now been done - feel sore and sorry Home again after a 7 day stay Specialists think that the change in periods is both CML and Glivec related but have not done many studies as many of the women diagnosed are older or have previously had hysterectomies. So it looks like we are all guinea pigs in part. It looks like I was born under a lucky bushel as I had so little blood left that I only had some hours to live if I had not been stablised with transfusions etc, in the end had some 19 bags of blood. The massive bleed came on very quickly - so one must be vigilant with our health. I would now suggest that anyone has irregular periods ask for a referral to a specialist gyno who specialises in uterine cancers and will work with your haem. I would also suggest to put on wall or fridge a note of who to contact - what hospital you wish to go to in an emergency - drugs being taken etc. and contact numbers of your medical team. I had done that - and when neighbours found me - they knew what to do and who to call and so gave myself the best chance of survival. CML is never boring. In my gut reaction I think it is a glivec reaction on some woman and more studies should be allocated to hormones. Of interest is the thryoid hormone as discussed in the bulletin. Thanks for the info from your chat last evening. Cheers Sue (Australia) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 10, 2008 Report Share Posted April 10, 2008 sue thank god you were proactive in your care and have great nieghbors, glad you made it . It's very kind of all of you to share ur experiences because the worse part of this bug is accepting the constant scares . just wanted to get some feed back on an event that took place in my life. I think when i joined the group, i shared it with u guys but since then I found out more info on the event:I lost a friend recently who was my cml mentor sha wz the 1st cml person i had ever met. she seemed fine and wz in remmision all along, and then BOOM she developed a lung condition wasted away in a month and died of a heart attack after not beeing able to breath for about two weeks, now that her husband is wakeing up from the nightmare of his loss, we spoke today and he said that when she wz dx with cml all there was at the time was interferon and later hydrox the in 2001 gleevec: it suposedlly caused legions on her lungs or so said her onc. so she was returned to hydrox...she began to suffer breathing events for 7 yrs.progresively until last month ,I called my onc/hemo and asked her about that possibility and she had no clue :now i hv been having breathing and chest pain events as well ,i've been to the er 3x hd blood work, chest xrays and nothing shows has anyone ever heard of gleevec causing lung leagions before?i've looked on line and the most i've seen is posible fluid buildup on the lung/heart/brain lining but never lung legions. aliza yaffa rochester n.y. **************Planning your summer road trip? Check out AOL Travel Guides. (http://travel.aol.com/travel-guide/united-states?ncid=aoltrv00030000000016) Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.