Thank you, Susan! You are an inspiration to all! :-) In a message dated 9/25/2011 6:43:16 A.M. Eastern Daylight Time, [email protected] writes:
Today's Topic Summary Group: _http://groups.google.com/group/cmlhope/topics_ (http://groups.google.com/group/cmlhope/topics) * _Problems with Food and Gleevec_ (mip://091f77e0/default.html#group_thread_0) [1 Update] Topic: _Problems with Food and Gleevec_ (http://groups.google.com/group/cmlhope/t/14a9abc196016adc) educatorsusan <[email protected]> Sep 24 09:58AM -0700 _^_ (mip://091f77e0/default.html#digest_top) TO everyone who has a teenie concern about food and Gleevec: I have been on Gleevec since April 2003. I am alive and kicking because of it. So, I look the other way to side effects. I am the throw up queen while on 600 mg of Gleevec from 2003-2005. Once reduced to 400 mg, I remained almost the throw up queen. I never knew what would trigger this dimension of the Gleevec paradigm! I am now on 250 mg., experimental, to which I must be tested every three months by Dr. Druker and under my local oncologists's office here in Miami…so do not do this on your own!!! It is not a tested, not a common thing to do…just happened to have worked out for me! So every 3 months, I now subject myself to the wonderful PCR blood draw to be sent up to Oregon to Dr. Druker and depending on the facilities available to do this other test, I need to have a Gleevec PK level done. Even on 250 mg, undetectable, I STILL have side effects. BUT I just dealt with them. I say that it is better than running out of options like taking another medication. Dr. Druker said to me on several occasions, that we should explore switching to another medication but we discussed this in great detail with my husband by my side. It was always decided NOT to switch--"if it ain't broke, don't go fixing it". So, with Dr, Druker's help and his assistant, Carolyn, we found other options to reduce the side effects. You name it, I have had them all EXCEPT the rash! Dr. Druker wrote about me in Blood magazine (could not use my name but told me I would recognize who it was!!!) and how every medication needs to be tailored to each individual person. In 2004, I had to finally go on the potassium sparing Lasix but I had so much fluid retention, this did not work and had to be placed on the regular Lasix. I ran a low grade temperature for 101 for many days in 2003, with everyone telling me that I was getting sick---NOT! That was part of the bone pain…only thing that took that away was the Celebrex…once under control they stopped the Celebrex cold turkey on me…found out that you could not do that with Susan…had to be titrated off!!!! I have found a trigger in the morning for throwing up…bananas!!! Just in the morning. I can have them any other time!!! I have recently lost 41 pounds (not a Gleevec side effect---a Weight Watchers one!!!! Took 8-9 months!) and have found that I feel MUCH better. This past week I had TWO, not one, eye bleeds. That is my only reminder, physically, that I have CML. The eye bleeds are certainly an annoyance. especially while teaching and the students asking me about them. I tell them I have no idea where they came from!!! So, besides feeling tired most of the time (not from pain), I am certainly VERY happy to be alive and telling others what to do (Tee- hee!) I have been through the pain route too and did not know what it was within 21 days of beginning Gleevec, I have a HIGH pain threshold so this was all so new to me in 2003. In fact whiten the first 24 hours, I had spoken to Dr. Druker and was told it was too early to tell anything. I knew at that time, I was going to be in trouble with a whole lot of problems. It turned out to be bone pain (i.e.: I could not walk, I could not lift a toothbrush up to my mouth, etc. I could not even explain this to t the doctors so that they understood what I was experiencing...) and had to be put on Celebrex with stopping Gleevec. Gleevec was stopped for only 4 days once I realized what was happening and since I did not want that type of pain again, I BEGGED to be put back on the Gleevec but would only let me start with 200 mgs and work up to 600 mg again. After becoming transfusion dependent (requiring a blood transfusion every 4-6 weeks) and completing my 10th transfusion, Dr. Druker said enough is enough…and we finally did a PK level---discovering that I had reached a toxic state with Gleevec. Even 300 mg was TOO much for my body! We tried alternating 200 one day and 300 mg the next day. But the PK levels would show about a year later that when I had the PK done (by accident) after a 200 dosage---I was not in therapeutic range… we retested with the 300 dosage and I was fine….thus the 250 mg dosage daily! I am not "sneezing" on any one of your side effects. I am just very knowledgeable about them all (except the rash….how I missed that one--- I do not know but from what I have been told, I am sure glad I did not get it!!!!) Every time, Dr. Druker sees me, he says "How did you ever make it through those years????" We all smile and hug and say it was a survival technique that seemed to work with his help and Carolyn's and, of course, my husband’s! I will be seeing him again this October 6th!!! He is truly amazing and I was so lucky to have him! Dr. Druker has placed me in his upper scale of 10% with side effects!!! So, my only new side effect is with a carotid artery---my left interior carotid artery is 50% to 60% blocked. Nothing else is wrong… my heart is perfect and so are all the other arteries. I wrote Dr. Druker because I know the left ventricular artery to the heart can be affected. So, since this is a very common issue, it cannot be tied back to the Gleevec…it is just odd that this particular artery is involved. So, I am writing this to all you warriors, letting you know that I have been around since 2003 with CML…still loving life and loving Gleevec…it is kind of a "love-hate" relationship. When I hear that others HAD to switch, I feel so bad for them because that is one more option that you are taking away from yourselves. It gives me great solace to know that I have many options out there if Gleevec should ever stop working for me. Side effects are just annoyances and with a wonderful happy spirit, anyone can overcome them! I smiled through the horrible years…I even smiled through throwing up---just made for a VERY bad morning---but without humor, life sucks! Keep up those chins and smile…there is a chemical that is released every time you smile and that alone makes you feel better, trust me…been there, done that…just like the rest of you! Have a wonderful weekend!!! Hugs, Susan Rosenthal -- [CMLHope] A support group of _http://cmlhope.com_ (http://cmlhope.com/) ------------------------------------------------- You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to [email protected] To unsubscribe from this group, send email to [email protected] For more options, visit this group at _http://groups.google.com/group/CMLHope_ (http://groups.google.com/group/CMLHope) -- [CMLHope] A support group of http://cmlhope.com ------------------------------------------------- You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to [email protected] To unsubscribe from this group, send email to [email protected] For more options, visit this group at http://groups.google.com/group/CMLHope
