Guest guest Posted January 18, 2010 Report Share Posted January 18, 2010 WOMEN AND BLEEDING (Glivec side effect) This message is for Cheryl T and others with womens' bleeding issues. Emergency Treatment for Bleeding I heard that a number of women are again having bleeding problems with glivec and Cheryl T has had a traumatic experience being rushed to ER for Transfusions to stop the bleeding. Thought I would share for Cheryl my experience. The message is two fold a.. Before I share - I would like to suggest for all women once diagnosed with CML and still having periods or not - b.. please get yourselves the best gyno who will care share your CML side impact issues with your CML specialist. c.. To have a Treatment Management Plan in case of an Emergency (like that of an evacuation plan) d.. including contacting neighbours so they know what your treatment plan is (leave in a clear view - on fridge door or somewhere people can get to and follow the information of contacts if you are unconscious etc e.. My own is a gyno specialist who treats all types of cancers plus being an obstetrician gynaecologist and a urogynaecologist and share cares my Treatment with my Haem Specialist . My Haem. researched and found this guy for me which proved to be the difference in an emergency bleed-out situation. My Experience I was diagnosed in 2007 ( like many others on my birthday) Glivec (600 mg) Besides all the common side effects that generally everyone receives as the trade off of having a great drug like glivec. I also which seems to be again quite common to lesser or more impacts is that of Period Bleeding. By the end of 2007 - my periods time span between each period was closer together; very heavy flows; flooding, large clotting and by the beginning of 2008 life was beginning not to be too great. During 2007 besides taking iron tablets for the anaemia I was also having many iron infusions, and by the first part of 2008 infusions were becoming frequent. The bleeding became such a problem that at times could not leave the house or do work in the paddocks - nearly house bound but not quite. My specialist (CML) had booked me into see the gyno - to find out what options and both specialists along with another Professor in the Gyno field were deciding which option would be the best for me. At this point I was bleeding quite heavily continually with only perhaps a couple of days rest from bleeding in between. Well never made it to the first appointment which was the following week. The Sunday - I looked completely white and was not feeling that well. Monday - had a massive bleed-out and luckily enough as is this world - I collapsed in the shower, came too, crawled to the phone, rang my treating hospital who phoned an ambulance and my specialist who in turn had all bloods ready for emergency transfusions along with every known specialist - cardio, renal failure guys etc. Apparently near death with very little blood left in me - perhaps a leg full. My neighbours stayed with me until the ambulance came and then phoned my husband who was at work. Many transfusions later which did not stop the bleeding by the way - a decision was made to have an emergency radical hysterectomy. 4 1/2 hours later and more transfusions - a week in hospital and 3 months off work at home. It took me at least 7 weeks to walk normally and another couple of weeks before I could drive just locally. Great positives in this story. There is a before and after - wonderful having a hysterectomy. So very freeing I have not been in hospital this year for bleeding at all. I have only been in hospital for a gastro bug where I needed fluids. My haemoglobin is up - I am PCRU - and note: during all this bleeding problem my PCR was falling all the time and CML responding well to glivec . If I had not had a bleed-out in such dramatic fashion - then I would of possibly had an ablation - DEC or Marina Coil or other type of support. Marina Coils I have heard from others experience who have had CML only have lasted a short time and then they have decided on a hysterectomy but in their own time and own decision and that decision not taken away from the family. I nearly lost my life if I did not have an emergency management plan - my neighbours not close by who in the end also contributed to saving my life and cleaning up my house after my bleed-out so my husband would not have come home and see what looked like carnage. For Cheryl This is exactly what happened to me - pills did not stop bleeding. Within a 24 hour period (April 1st) by the way - an emergency radical hysterctomy - as the bleeding just did not stop - then a number of transfusions to top me up again - the difference is amazing If you have the operation - I have a number of hints now to get over it - and please contact me privately if you wish to converse. Hopefully you will not continue to bleed - but from experience - this will continue to happen until a decision is made one way or the other your treatment options. This type of bleed-out takes a long time to get over - and possibly like myself you will lose tons of weight but never fear it will return (weight that is) - you will be very weak and you will need a strong support network - Glivec: I stopped glivec for 6 days - because of all the other drugs given - then started on a smaller dose for a week then back up to my normal 600 mg Thinking of you today Cheryl - keep moving those toes - breathing is my favourite thing to do - things will improve - any pain or more bleeding - press that buzzer asap Sue (Aussie) __________ Information from ESET NOD32 Antivirus, version of virus signature database 4782 (20100118) __________ The message was checked by ESET NOD32 Antivirus. http://www.eset.com __________ Information from ESET NOD32 Antivirus, version of virus signature database 4784 (20100118) __________ The message was checked by ESET NOD32 Antivirus. http://www.eset.com __________ Information from ESET NOD32 Antivirus, version of virus signature database 4784 (20100118) __________ The message was checked by ESET NOD32 Antivirus. http://www.eset.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2010 Report Share Posted January 18, 2010 Sue, Thanks for your story. I have been on Gleevec 400 mg since early October 2007. My periods have stayed the same time wise - perhaps a couple of days closer (like 27 or 28 day cycle). But, I HAVE noticed more and larger clotting in the past 6 months. Thank you for this information. I will relay it too my husband and in some way family members. Tammy Quote Link to comment Share on other sites More sharing options...
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