CancerCompass message board discussion started by vandyrenee on 5/14/2008 http://www.cancercompass.com/message-board/message/all,24027,0.htm Thu, 20 Nov 2008 00:00:00 GMT Thu, 20 Nov 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ I am 50, just turned in January, in Feb I was told that I had 6 mos to live.my CA 19 9 was at 344, and I had a CT assisted biopsy.  Started Gemzar once per week for 3 weeks and off for 1 week to be repeated for 6 treatments.   Treatments 1 - 4 weren't too bad, very tired, but with each treatment it took longer and longer to recover. by the 5th treatment, within 24 hours the lower half of my body was swollen, no a little but a lot, there was not much different in my legs from my knees to my feet.  The ankles disappeared completly.  That took 5 days of bed rest and my feet elevated, to get over.  By the 6th treatment the swelling was more intense and now accompanied by very intense pain.  That took 2 full weeks to recover from.  The medical staff at the Oncoloy department, said that it has nothing at all to do with the Gemzar, but can not tell me what is causing this, swelling & pain.  I had decided at the end of April that the effects and recovery were just not worth the treatment.  However, when I went in to tell them that, my CA 19 9 came in at 58.  I insisted on another CT scan, and to my suprise my mass has decreased by 1 cm long and 1 cm wide.  I have a trip planed next week, that will require my felling good.  And right now I feel great.  My family told me yesterday that it is good to have me back.So, I suppose that when I get back in June, I will begin the Gemzar again but at a lesser dosage.    The point of all of this is that I am wondering what side effect others have experienced.  I only get fatigue and the Swelling.Please share your experience with me. vandyrenee Wed, 14 May 2008 00:00:00 GMT  On 5/14/2008 vandyrenee wrote:I am 50, just turned in January, in Feb I was told that I had 6 mos to live.my CA 19 9 was at 344, and I had a CT assisted biopsy.  Started Gemzar once per week for 3 weeks and off for 1 week to be repeated for 6 treatments.   Treatments 1 - 4 weren't too bad, very tired, but with each treatment it took longer and longer to recover. by the 5th treatment, within 24 hours the lower half of my body was swollen, no a little but a lot, there was not much different in my legs from my knees to my feet.  The ankles disappeared completly.  That took 5 days of bed rest and my feet elevated, to get over.  By the 6th treatment the swelling was more intense and now accompanied by very intense pain.  That took 2 full weeks to recover from.  The medical staff at the Oncoloy department, said that it has nothing at all to do with the Gemzar, but can not tell me what is causing this, swelling & pain.  I had decided at the end of April that the effects and recovery were just not worth the treatment.  However, when I went in to tell them that, my CA 19 9 came in at 58.  I insisted on another CT scan, and to my suprise my mass has decreased by 1 cm long and 1 cm wide.  I have a trip planed next week, that will require my felling good.  And right now I feel great.  My family told me yesterday that it is good to have me back.So, I suppose that when I get back in June, I will begin the Gemzar again but at a lesser dosage.    The point of all of this is that I am wondering what side effect others have experienced.  I only get fatigue and the Swelling.Please share your experience with me.First of all FORGET the 6 mo nonsense! They are not God. My husband was diagnosed 4-07 stage 4 -his CA19-9 was 2350 in the beginning. Went all  the way down to 8. He started with Gemzar., ended with 5-FU  The fatigue is a given with any chemo, but he also had COLD feet. The worst day was the third day.Had very little hair thinning,some nausea but not like   some of the other chemo.I don't remember any  swelling, at least not to the extent you had.He  went without any chemo for 4 mo but will probably start again with the 5-FU     later this month or beginning of June.Jan  Hang in there hiswayc Thu, 15 May 2008 00:00:00 GMT vandyrenee,Sorry you are having so much trouble with chemo but glad your Ca 19-9 has reduced so dramatically!  I suggest you visit the Johns Hopkins support board; it is much more active than this board.  There are many caregivers and survivors there who are very knowledegable and they are very willing to answer questions and assist in any way they can.  Stop in there, you have nothing to lose. and you might find there is much to gain.  I'm sorry I don't know their web address but you can Google them.Best of luck to you and don't give up!.Joan  Joan l Fri, 16 May 2008 00:00:00 GMT Hi I had the whipple in August 2006. Been on chemo since October 2006, GEMZAR and 5FU (still on both). I also started taking Xeloda in March.Only problems I have is fatigue and no strength. Fatigue is the chemo and I guess the no strength is the cancer....Feel beatter...... Don't give up the fight.  mrtippy Sun, 18 May 2008 00:00:00 GMT