Guest guest Posted June 27, 2008 Report Share Posted June 27, 2008 Alice: I am from ville as well, as are several other CMLers that read this board. Any of us would be glad to share information or experience, especially with doctors. My first doctor in ville was wonderful and supportive but gave me the right diagnosis, but the wrong treatment plan. So be careful and ask questions. I would also make contact with Jill at the LLS on JTB, she is terrific and was the patient services director for many years. You are going to live a long life and can have children, and have fun, you will just have to make a few adjustments. But don't we all? My best wishes to you and your family, Matt ville In a message dated 6/27/2008 6:08:53 P.M. Eastern Daylight Time, ablarson05@... writes: Hello! My name is Alice and I'm 26 years old. I just got diagnosed with CML this week. This came as a great shock to me, and I'm having some trouble digesting it all. I'm lucky enough to have an amazing doctor here in ville, who (along with my husband and family) has been so helpful. I just wanted to say hi and I hope to learn a lot and get to know everyone on here. Thanks. **************Gas prices getting you down? Search AOL Autos for fuel-efficient used cars. (http://autos.aol.com/used?ncid=aolaut00050000000007) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2008 Report Share Posted June 27, 2008 Hi Alice. Welcome to the group. There are people here who can and will help with good information that I'm sure you'll find useful. There's a lot of strength and experience here. How were you diagnosed? Results of first tests? If you want to share, that is. Hope, always. [ ] Just got diagnosed... Hello! My name is Alice and I'm 26 years old. I just got diagnosed with CML this week. This came as a great shock to me, and I'm having some trouble digesting it all. I'm lucky enough to have an amazing doctor here in ville, who (along with my husband and family) has been so helpful. I just wanted to say hi and I hope to learn a lot and get to know everyone on here. Thanks. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2008 Report Share Posted June 28, 2008 Alice: Sounds like you are on the right track. Most doctors start with 400 mg dosages, although mine started at 800 mg. It takes a little while, maybe even up to a few months to adjust to Gleevec, so give it some time and know that it will get better. If you have muscle cramps or bone pain, some people find a hot pad useful. And for the GI symptoms, things like Immodium, Compazine and Phenergan can be helpful. Just know that there are others of us in ville and there is plenty of support here if you need it. Matt ivlle Father of Three CML Warrior of 4 Years In a message dated 6/28/2008 9:14:29 A.M. Eastern Daylight Time, ablarson05@... writes: Matt, thank you so much for the information and kind words. My doctor has been amazing so far. Very informative and supportive. I just started yesterday on 400mg of Gleevec. I'm already feeling a little bit of nausea, which I guess is to be expected. It could be worse, right? Thanks again. --- In _@..._ (mailto: ) , mtmaynor@... wrote: > > Alice: > > I am from ville as well, as are several other CMLers > that read this board. Any of us would be glad to share information > or experience, especially with doctors. My first doctor in ville > was wonderful and supportive but gave me the right diagnosis, but the > wrong treatment plan. So be careful and ask questions. I would also > make contact with Jill at the LLS on JTB, she is terrific and > was the patient services director for many years. > > You are going to live a long life and can have children, and have fun, > you will just have to make a few adjustments. But don't we all? > > My best wishes to you and your family, > > Matt > ville > > > > > In a message dated 6/27/2008 6:08:53 P.M. Eastern Daylight Time, > ablarson05@. ablar > > > > > Hello! My name is Alice and I'm 26 years old. I just got diagnosed with > CML this week. This came as a great shock to me, and I'm having some > trouble digesting it all. I'm lucky enough to have an amazing doctor > here in ville, who (along with my husband and family) has been > so helpful. I just wanted to say hi and I hope to learn a lot and get > to know everyone on here. Thanks. > > > > > > > > ************ ************<WBR>**Gas prices getting you down? > fuel-efficient used cars. (_http://autos.http://autos._ (http://autos.aol.com/used?) ncid=aolaut00050000ncid=ao > > > [Non-text portions of this message have been removed] > **************Gas prices getting you down? Search AOL Autos for fuel-efficient used cars. (http://autos.aol.com/used?ncid=aolaut00050000000007) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2008 Report Share Posted June 28, 2008 Matt, thank you so much for the information and kind words. My doctor has been amazing so far. Very informative and supportive. I just started yesterday on 400mg of Gleevec. I'm already feeling a little bit of nausea, which I guess is to be expected. It could be worse, right? Thanks again. > > Alice: > > I am from ville as well, as are several other CMLers > that read this board. Any of us would be glad to share information > or experience, especially with doctors. My first doctor in ville > was wonderful and supportive but gave me the right diagnosis, but the > wrong treatment plan. So be careful and ask questions. I would also > make contact with Jill at the LLS on JTB, she is terrific and > was the patient services director for many years. > > You are going to live a long life and can have children, and have fun, > you will just have to make a few adjustments. But don't we all? > > My best wishes to you and your family, > > Matt > ville > > > > > In a message dated 6/27/2008 6:08:53 P.M. Eastern Daylight Time, > ablarson05@... writes: > > > > > Hello! My name is Alice and I'm 26 years old. I just got diagnosed with > CML this week. This came as a great shock to me, and I'm having some > trouble digesting it all. I'm lucky enough to have an amazing doctor > here in ville, who (along with my husband and family) has been > so helpful. I just wanted to say hi and I hope to learn a lot and get > to know everyone on here. Thanks. > > > > > > > > **************Gas prices getting you down? Search AOL Autos for > fuel-efficient used cars. (http://autos.aol.com/used? ncid=aolaut00050000000007) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2008 Report Share Posted June 28, 2008 , I went to my PCP complaining of my entire left side of my abdomen being swollen and rigid (enlarged spleen, I later found out). My dr. sent me to get blood work and a CT scan. He called me the next day saying my WBC count was 466,000!! Yikes! He sent me to the ER, where I got more blood taken and eventually got a BMB and blood transfusion. It was difficult and happened so quickly, but I'm fortunate to have caught it early. I just started Gleevec yesterday, so I go to get bloodwork done in a week. We'll see. Just taking it day by day. Thanks for the welcome. > > Hi Alice. Welcome to the group. There are people here who can and will help with good information that I'm sure you'll find useful. There's a lot of strength and experience here. How were you diagnosed? Results of first tests? If you want to share, that is. > > Hope, always. > > > [ ] Just got diagnosed... > > > Hello! My name is Alice and I'm 26 years old. I just got diagnosed with > CML this week. This came as a great shock to me, and I'm having some > trouble digesting it all. I'm lucky enough to have an amazing doctor > here in ville, who (along with my husband and family) has been > so helpful. I just wanted to say hi and I hope to learn a lot and get > to know everyone on here. Thanks. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 29, 2008 Report Share Posted June 29, 2008 Hi Alice, Welcome to the board. There are many people here that can help and support you. I too live in ville and would be willing to be available to you anytime. I am on 400 mg Gleevec and was dx'd in July 2003. For a brief time I was increased to 800mg, but lowered back down to 400mg. I am sure you are going to do great. Joan Porter Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 29, 2008 Report Share Posted June 29, 2008 Hi Alice, Welcome to the group. I was dx in 2005 at 38, doing great on 400mg of gleevec. I am just getting home from diving in Monterey bay this morning, life's pretty normal. Take it easy the time to find your footing, but keep your spirits up, odds are good that you'll do fine on gleevec. Cheers, Marcos. On Sat, Jun 28, 2008 at 5:49 PM, joanfporter <cellphonejoan@...> wrote: > Hi Alice, > Welcome to the board. There are many people here that can help and > support you. I too live in ville and would be willing to be > available to you anytime. I am on 400 mg Gleevec and was dx'd in July > 2003. For a brief time I was increased to 800mg, but lowered back down > to 400mg. I am sure you are going to do great. > Joan Porter > > -- Marcos Perreau Guimaraes Suppes Brain Lab Ventura Hall - CSLI Stanford University 220 Panama street Stanford CA 94305-4101 650 614 2305 650 630 5015 (cell) marcospg@... montereyunderwater@... www.stanford.edu/~marcospg/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 29, 2008 Report Share Posted June 29, 2008 Hi Alice, welcome, you're in good hands here. I'm 78 and have had CML for over 13 years. I live a normal life, travel a bit, and have great times with my 6 children and their 11 children, and 8 great grandchildren (7 are step kids). The point is, live, make merry, have a great time, and little by little your mind will not always be on CML, there are bigger and better things to dwell on.. Lots of luck, blessings, Bobby Doyle Marcos Perreau Guimaraes <montereyunderwater@...> wrote: Hi Alice, Welcome to the group. I was dx in 2005 at 38, doing great on 400mg of gleevec. I am just getting home from diving in Monterey bay this morning, life's pretty normal. Take it easy the time to find your footing, but keep your spirits up, odds are good that you'll do fine on gleevec. Cheers, Marcos. On Sat, Jun 28, 2008 at 5:49 PM, joanfporter <cellphonejoan@...> wrote: > Hi Alice, > Welcome to the board. There are many people here that can help and > support you. I too live in ville and would be willing to be > available to you anytime. I am on 400 mg Gleevec and was dx'd in July > 2003. For a brief time I was increased to 800mg, but lowered back down > to 400mg. I am sure you are going to do great. > Joan Porter > > -- Marcos Perreau Guimaraes Suppes Brain Lab Ventura Hall - CSLI Stanford University 220 Panama street Stanford CA 94305-4101 650 614 2305 650 630 5015 (cell) marcospg@... montereyunderwater@... www.stanford.edu/~marcospg/ a (Bobby) Doyle Brecksville, Ohio, USA DX 05/1995 02/2000 - Gleevec Trial/OHSU 06/2002 - Gleevec/Trisenox Trial/OHSU 06/2003 - Gleevec/Zarnestra Trial/OHSU 04/2004 - Sprycel Trial/MDACC, CCR in 10 months #840 - Zavie's Zero Club 09/2006 - out of CCR 04/29/08 - XL228 Trial/ U.of Michigan 06/02/08 - CCR ( in 4 weeks) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 29, 2008 Report Share Posted June 29, 2008 Hi Alice. I am also quite new to this group. My boyfriend i 32 and was diagnosed about a month ago. It was really hard to digest for us as well, and we are just starting to accept it and get used to it. he has now been on Gleevec and for a little over a week and has nausea about and hour and a half after taking his pill. From what I hear, these symptoms subside afer a while, so that is good news. I don't have much expericne with this, but from what I read and research, you will be fine. Gleevec is great, and if it doesn't work so well for you, then there are also alternative drugs that are also helpful. Good luck with everything! All the best! I'll check in with in a week or so to see how you're doing on Gleevec. > > Hello! My name is Alice and I'm 26 years old. I just got diagnosed with > CML this week. This came as a great shock to me, and I'm having some > trouble digesting it all. I'm lucky enough to have an amazing doctor > here in ville, who (along with my husband and family) has been > so helpful. I just wanted to say hi and I hope to learn a lot and get > to know everyone on here. Thanks. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 29, 2008 Report Share Posted June 29, 2008 Nausea after glivec Try eating more carbohydrates - take glivec with food - and you must have enough food in you for the drug to not work on the stomach. Take 1 x ml of water for every mg of drug. 600mg take 600ml of water. I have 3 pieces of toast - no butter - just jam and then glivec and bottle of water - do not lay or sit down and walk or move around and you should be A-OK. I no longer have milk or milk fats anytime that I have glivec - that included yoghurts - I wait until the afternoon to have those. Just my suggestionss. Feel for you - I hate that qeezey feelng. Sue > > > > Hello! My name is Alice and I'm 26 years old. I just got diagnosed > with > > CML this week. This came as a great shock to me, and I'm having some > > trouble digesting it all. I'm lucky enough to have an amazing doctor > > here in ville, who (along with my husband and family) has been > > so helpful. I just wanted to say hi and I hope to learn a lot and get > > to know everyone on here. Thanks. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 30, 2008 Report Share Posted June 30, 2008 You need a good meal to take Gleevec. Sweets help nausea,no salad does not mix.You will some foods help and it is not the same with all. Time helps but sems that is slow,we all have been there. dx 12/23/05 600 Gleevec last count.00308. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2008 Report Share Posted July 2, 2008 Hi, Alice , I was just diagnosed this year as well . This site and these people are amazing . They have been of great comfort to me with their knowledge and compassion. Take care and God Bless ; Eva B From: ablarson05 Sent: Friday, June 27, 2008 4:53 PM Subject: [ ] Just got diagnosed... Hello! My name is Alice and I'm 26 years old. I just got diagnosed with CML this week. This came as a great shock to me, and I'm having some trouble digesting it all. I'm lucky enough to have an amazing doctor here in ville, who (along with my husband and family) has been so helpful. I just wanted to say hi and I hope to learn a lot and get to know everyone on here. Thanks. Quote Link to comment Share on other sites More sharing options...
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