Guest guest Posted March 9, 2007 Report Share Posted March 9, 2007 Manny The current recommended initial dose for Gleevec is now 600mg. I started on 600mg and now am on 800mg. The bone pain and muscle aches in the beginning are completely normal and can be rather intense in the beginning, but this will die down some. Just know that it is the Gleevec working in the bone marrow. The pain is a good thing in the beginning, it means the Gleevec is working. You want to have the best response as possible and get to a 3 log reduction in your PCR count as quickly as possible. This will give you the best outcomes and best remission statistics. Be positive and keep your chin up. You can take Ibuprofen for the aches and pains as long as you have no other health indications in which would normally prevent you from taking it. Take the Gleevec on a full stomach and don't lay down for 30-45 minutes after it. I get a lot of muscle aches with it so I take it late evening before bed so that I can sleep through most of it. I take Zofran for nausea as it works wonderfully. Play around with the time of day and see what works best for you. Hope this helps in some way! Best of luck and keep looking at this site, People have great suggestions. hugs- 34 CML 5/13/05 Gleevec 800mg Wife and mother of 3 (11,8,6) <BR><BR><BR>**************************************<BR> AOL now offers free email to everyone. Find out more about what's free from AOL at http://www.aol.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2007 Report Share Posted March 10, 2007 Take the gleevec on full stomack If I get nausa I take a mint or candy the sugar helps me I'm on 400 dx 12-23-05 Tn. [ ] Gleevec Dosage Increase - Help/Questions I was diagnosed with CML on 12-22-06 and started on Hydroxurea and Allopurinol. My oncologist then switched me to 400mg of Gleevec on Jan. 4, 2007. I recently had a follow-up visit with my oncologist on March 7th. He said my numbers are fine but switched me to 600mg of Gleevec. According to him, studies show that treating someone with Chronic CML at 600mg is better than 400mg. I haven taken my new dosage for three days and am experiencing some severe bone pain/body aches, upset stomach and fatigue. I prefer to be on 400mg, as my body got use to the small side effects with that dosage (bone pain, fatigue, and a rash). How long should I try the 600mg? Is there any aspirin or pain medication you all recommend? Can I drink chamomile tea to help with the upset stomach? Any help would be much appreciated, as I am still new at all this and learning every day. ________________________________________________________________________________\ ____ Don't get soaked. Take a quick peek at the forecast with the Search weather shortcut. http://tools.search./shortcuts/#loc_weather Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2007 Report Share Posted March 10, 2007 Hi Manny, Welcome to the club that nobody really wanted to be a member of. You will get lots of good tips and advice on this list. The person who should be answering your questions is your doctor. It is important to see a doctor who has lots of experience in treating CML. He should have explained to you exactly what treatment he was planning for you. Based on your post, it seems that the increase to 600 mg was a surprise to you. Do you know if he planned this dose right from the beginning or was there a change in your counts or did he just read a report that suggested that 600 mg was a better dose? My first suggestion to you is to make sure that you get a copy of all your test results. It won't take very long to figure out what is happening in your treatment by yourself. The standard starting dose for someone in the chronic stage is still 400 mg daily. Clinical trials have compared starting doses of 400 mg vs 600 mg vs 800 mg. In general what they have shown is that the higher doses bring you to the same level of remission much quicker than on the lower dose. Over time, the 400 mg dose will attain the same level of remission as on the 600 mg dose. If the higher dose is affecting your QOL (Quality of Life), then I don't see the point of taking 600 mg if the 400 mg dose is doing a good job. I would give the 600 mg dose a month before asking your doctor to reduce it to 400 mg. For a good, but more technical paper, the " Practical Management of Patients With Chronic Myeloid Leukemia Receiving Imatinib " . Is an excellent start. http://www.cmlsupport.com/practicalmanagementjourclinonc0303.pdf The only food they don't want you to take is grapefruit juice. They also prefer that you don't use Tylenol. Zavie Zavie (age 68) 67 Shoreham Avenue Ottawa, Canada, dxd AUG/99 INF OCT/99 to FEB/00, CHF No meds FEB/00 to JAN/01 Gleevec since MAR/27/01 (400 mg) CCR SEP/01. #102 in Zero Club PCRU 5/02 at RVH 2.8 log reduction Sep/05 3.0 log reduction Jan/06 e-mail: zmiller@... Tel: 613-726-1117 Fax: 309-296-0807 Cell: 613-202-0204 ID: zaviem [ ] Gleevec Dosage Increase - Help/Questions I was diagnosed with CML on 12-22-06 and started on Hydroxurea and Allopurinol. My oncologist then switched me to 400mg of Gleevec on Jan. 4, 2007. I recently had a follow-up visit with my oncologist on March 7th. He said my numbers are fine but switched me to 600mg of Gleevec. According to him, studies show that treating someone with Chronic CML at 600mg is better than 400mg. I haven taken my new dosage for three days and am experiencing some severe bone pain/body aches, upset stomach and fatigue. I prefer to be on 400mg, as my body got use to the small side effects with that dosage (bone pain, fatigue, and a rash). How long should I try the 600mg? Is there any aspirin or pain medication you all recommend? Can I drink chamomile tea to help with the upset stomach? Any help would be much appreciated, as I am still new at all this and learning every day. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2007 Report Share Posted March 10, 2007 Hi Manny I Have kept a journal from day one,1990 until today and looking back on medication and what they did and didn't do is great to read how far we've come in 17 years.OHSU,HUMANA IN Vegas and Corvallis Clinic want me to write a book about my Leukemia [CHRONIC MYELOCYTIC] Will see,I would need a Ghost writer; Peggy [ ] Gleevec Dosage Increase - Help/Questions I was diagnosed with CML on 12-22-06 and started on Hydroxurea and Allopurinol. My oncologist then switched me to 400mg of Gleevec on Jan. 4, 2007. I recently had a follow-up visit with my oncologist on March 7th. He said my numbers are fine but switched me to 600mg of Gleevec. According to him, studies show that treating someone with Chronic CML at 600mg is better than 400mg. I haven taken my new dosage for three days and am experiencing some severe bone pain/body aches, upset stomach and fatigue. I prefer to be on 400mg, as my body got use to the small side effects with that dosage (bone pain, fatigue, and a rash). How long should I try the 600mg? Is there any aspirin or pain medication you all recommend? Can I drink chamomile tea to help with the upset stomach? Any help would be much appreciated, as I am still new at all this and learning every day. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2007 Report Share Posted March 10, 2007 My hemotologist is head of leukemia at MD in Houston, and I can share his words of wisdom with you. The more Gleevec you can tolerate, the better.I started out at 600, but couldnt handle it. Of course I was in blast when I began and went thru 3 years of hard chemo beginning in '02, taking Gleevec, 6mp and methotrexate at the same time. These, I still take. Ive been lowered to 400 of Gleevec since. The backlash of all this almost killed me, but Im doing well now. Tolerance, I think is the key. Gleevec has side effects, so I would give it some time. I wouldnt question your doctor until you are sure you cant handle it, then I wouldnt hesitate to talk to him. Three days isnt enough to see what will happen. God bless, Denice manny45409 <manny1113@...> wrote: I was diagnosed with CML on 12-22-06 and started on Hydroxurea and Allopurinol. My oncologist then switched me to 400mg of Gleevec on Jan. 4, 2007. I recently had a follow-up visit with my oncologist on March 7th. He said my numbers are fine but switched me to 600mg of Gleevec. According to him, studies show that treating someone with Chronic CML at 600mg is better than 400mg. I haven taken my new dosage for three days and am experiencing some severe bone pain/body aches, upset stomach and fatigue. I prefer to be on 400mg, as my body got use to the small side effects with that dosage (bone pain, fatigue, and a rash). How long should I try the 600mg? Is there any aspirin or pain medication you all recommend? Can I drink chamomile tea to help with the upset stomach? Any help would be much appreciated, as I am still new at all this and learning every day. --------------------------------- Bored stiff? Loosen up... Download and play hundreds of games for free on Games. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2007 Report Share Posted March 11, 2007 Hi Denice I started on 800 mg then down to 600mg and then down to 400mg a day as you did,I started in 2001 when gleevec was still in study stage,It saved my life as i was also very bad,I even survived pneumonia in sept. of 2006 with out being bed bound.We are so lucky to have all the new medications to help us with out suffering so bad. Peggy Re: [ ] Gleevec Dosage Increase - Help/Questions My hemotologist is head of leukemia at MD in Houston, and I can share his words of wisdom with you. The more Gleevec you can tolerate, the better.I started out at 600, but couldnt handle it. Of course I was in blast when I began and went thru 3 years of hard chemo beginning in '02, taking Gleevec, 6mp and methotrexate at the same time. These, I still take. Ive been lowered to 400 of Gleevec since. The backlash of all this almost killed me, but Im doing well now. Tolerance, I think is the key. Gleevec has side effects, so I would give it some time. I wouldnt question your doctor until you are sure you cant handle it, then I wouldnt hesitate to talk to him. Three days isnt enough to see what will happen. God bless, Denice manny45409 <manny1113@...> wrote: I was diagnosed with CML on 12-22-06 and started on Hydroxurea and Allopurinol. My oncologist then switched me to 400mg of Gleevec on Jan. 4, 2007. I recently had a follow-up visit with my oncologist on March 7th. He said my numbers are fine but switched me to 600mg of Gleevec. According to him, studies show that treating someone with Chronic CML at 600mg is better than 400mg. I haven taken my new dosage for three days and am experiencing some severe bone pain/body aches, upset stomach and fatigue. I prefer to be on 400mg, as my body got use to the small side effects with that dosage (bone pain, fatigue, and a rash). How long should I try the 600mg? Is there any aspirin or pain medication you all recommend? Can I drink chamomile tea to help with the upset stomach? Any help would be much appreciated, as I am still new at all this and learning every day. --------------------------------- Bored stiff? Loosen up... Download and play hundreds of games for free on Games. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2007 Report Share Posted March 11, 2007 Hey Peggy, You are absolutely right about medications. I pray for everyone at Novartis, right down to the janitor! It was trial when I started, too. I like you attitude, you must be like me, take what comes and thank God for each day. So many people complain of the bad instead of thinking of the good. Without these meds wed all be dead, thats something to really complain about!!! Denice peggy irwin <quinbare@...> wrote: Hi Denice I started on 800 mg then down to 600mg and then down to 400mg a day as you did,I started in 2001 when gleevec was still in study stage,It saved my life as i was also very bad,I even survived pneumonia in sept. of 2006 with out being bed bound.We are so lucky to have all the new medications to help us with out suffering so bad. Peggy Re: [ ] Gleevec Dosage Increase - Help/Questions My hemotologist is head of leukemia at MD in Houston, and I can share his words of wisdom with you. The more Gleevec you can tolerate, the better.I started out at 600, but couldnt handle it. Of course I was in blast when I began and went thru 3 years of hard chemo beginning in '02, taking Gleevec, 6mp and methotrexate at the same time. These, I still take. Ive been lowered to 400 of Gleevec since. The backlash of all this almost killed me, but Im doing well now. Tolerance, I think is the key. Gleevec has side effects, so I would give it some time. I wouldnt question your doctor until you are sure you cant handle it, then I wouldnt hesitate to talk to him. Three days isnt enough to see what will happen. God bless, Denice manny45409 <manny1113@...> wrote: I was diagnosed with CML on 12-22-06 and started on Hydroxurea and Allopurinol. My oncologist then switched me to 400mg of Gleevec on Jan. 4, 2007. I recently had a follow-up visit with my oncologist on March 7th. He said my numbers are fine but switched me to 600mg of Gleevec. According to him, studies show that treating someone with Chronic CML at 600mg is better than 400mg. I haven taken my new dosage for three days and am experiencing some severe bone pain/body aches, upset stomach and fatigue. I prefer to be on 400mg, as my body got use to the small side effects with that dosage (bone pain, fatigue, and a rash). How long should I try the 600mg? Is there any aspirin or pain medication you all recommend? Can I drink chamomile tea to help with the upset stomach? Any help would be much appreciated, as I am still new at all this and learning every day. --------------------------------- Bored stiff? Loosen up... Download and play hundreds of games for free on Games. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2007 Report Share Posted March 12, 2007 I LOVE LIFE,I'M VERY LUCKY, I STILL HAVE ALL MY CHILDREN [TWO] & GRAND CHILDREN PLUS 2 GREAT GRAND CHILDREN & ONE TO BE BORN IN MAY,ALTHOUGH MY PLATELETS ARE AT 708 AND CLIMBING I SHOULD GET SPRYCEL THIS WEEK,NOT ANY TO SOON. KEEP THAT GREAT ATTITUDE DENICE PEGGY Re: [ ] Gleevec Dosage Increase - Help/Questions My hemotologist is head of leukemia at MD in Houston, and I can share his words of wisdom with you. The more Gleevec you can tolerate, the better.I started out at 600, but couldnt handle it. Of course I was in blast when I began and went thru 3 years of hard chemo beginning in '02, taking Gleevec, 6mp and methotrexate at the same time. These, I still take. Ive been lowered to 400 of Gleevec since. The backlash of all this almost killed me, but Im doing well now. Tolerance, I think is the key. Gleevec has side effects, so I would give it some time. I wouldnt question your doctor until you are sure you cant handle it, then I wouldnt hesitate to talk to him. Three days isnt enough to see what will happen. God bless, Denice manny45409 <manny1113@...> wrote: I was diagnosed with CML on 12-22-06 and started on Hydroxurea and Allopurinol. My oncologist then switched me to 400mg of Gleevec on Jan. 4, 2007. I recently had a follow-up visit with my oncologist on March 7th. He said my numbers are fine but switched me to 600mg of Gleevec. According to him, studies show that treating someone with Chronic CML at 600mg is better than 400mg. I haven taken my new dosage for three days and am experiencing some severe bone pain/body aches, upset stomach and fatigue. I prefer to be on 400mg, as my body got use to the small side effects with that dosage (bone pain, fatigue, and a rash). How long should I try the 600mg? Is there any aspirin or pain medication you all recommend? Can I drink chamomile tea to help with the upset stomach? Any help would be much appreciated, as I am still new at all this and learning every day. --------------------------------- Bored stiff? Loosen up... Download and play hundreds of games for free on Games. Quote Link to comment Share on other sites More sharing options...
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