Guest guest Posted November 25, 2005 Report Share Posted November 25, 2005 Hello Cheryl Anne I really enjoyed your post. What a day to be diagnosed on! I always read your posts as they are incredibly informative and I wanted to thank you for all the work you do in that regard. I appreciate the trips to conferences and the reports you write for all of us. It affords us the information we might otherwise miss. Several times, it has given me hope as well. For me, information is power. I was diagnosed on 5-5-02. I am coming up on my 4th anniversary in May ( I am 54). I try to work full time (I teach theology at a Catholic School in sdale) and most of the time I can do well. I have recently traveled through menopause and with that and gleevec, the oncologist believes that I am suffering from edema (especially lower arms and legs) as a result of those two things. I never had edema (other than around the eyes) before on gleevec, but evidently, it decided to come now. It is bad enough I have lost a great amount of mobility and I take 600 mg Advil every 5 hours to get through the day. I am thinking of checking out MDACC for the BMS Trial if it continues to get worse. I realize I would be trading side effect for side effect. But I want to be able to continue to work. I am connected with City of Hope here in Phoenix and checking out any trials they may have as well. Although I don't think they have the BMS. I almost think I just need a consult with MDACC to see what other options are out there for me. We will see. I consider myself very lucky to be PCRU on 400 mg. I wait anxiously for the announcement - and am sure it will be nothing less than sterling. My best to you and good health to all. Barb in AZ Message: 3 Date: Thu, 24 Nov 2005 10:19:26 -0500 From: " Cheryl-Anne Simoneau " <cheryl.simoneau@...> Subject: Happy Thanksgiving and a celebration of my 5th anniversary of Diagnosis Hello All, Today marks my 5th anniversary of diagnosis with CML. Much like today, I greeted that day five years ago with anticipation of the day's celebration even though I was not feeling well. A side trip to the hospital for a totally un-related event led to a not so routine blood test where my world collided with cancer, leukemia, and more specifically CML. In many ways, being diagnosed on Thanksgiving was a blessing in disguise. I was reminded to be thankful and grateful that although this diagnosis was probably inevitable (I had worked for many years as a radiology/nuclear medicine sales rep) I had the good fortune to find myself in good care at the McGill University Health Centre here in Montreal (I am an American living in Canada) and with a top doctor in Canada, Dr. Pierre Laneuville. Much in my life has changed, how could it not? In the early days, I thought I would not want to be vocal about CML and life with cancer in general. After loosing my job because of CML (small time employers were worried about the cost of this drug and the impact on their modest health care plan), the subsequent law suit (which not surprisingly I won, but for me it wasn't about the money, it was about the principle) - well let's just say it is a woman's prerogative to change her mind! Today, while I have recently gone back to work full time, I do whatever I can to help other CML patients by organizing information sessions, helping people find doctors, access to drugs and sometimes just hugging and handholding when times get tense. So, while I do not post much I am still very active in this community. Stay tuned, in a very short while there will be an announcement of the creation of an organization totally dedicated to support, educate and advocate on the behalf of all CML patients. It's been a lot of work but it has been lots of fun! Blessings and warm wishes of peace love, gratitude and health - may we all be happy and healthy! Cheryl-Anne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 26, 2005 Report Share Posted November 26, 2005 Thank you very much Barb, I always enjoy hearing from you too! I agree with you, information is power. I can understand what you are talking about with edema, I am prone to having trouble with that as well. I have found that taking 20mg of lasix on a regular basis has helped and I have also altered considerably the food I eat and the amount of exercise I do. During the last six months, I have converted all food in my house to organic food. I like the idea of ingesting less chemicals, articifial sweetners and pesticides. I have increased my Yoga sessions and weight training and aerobic exercise. I think all of this has been beneficial. My edema as significantly abatted. I also suffer from low Hgb, so sometimes it takes a lot of self talk to get through my daily agenda arriving to bed at night totally exhausted and sleep feels like a well induced coma ;>)! For the lower leg edema you might want to try compression hosiery; it works wonders for me when I am on my feet for any length of time. It helps to squeeze the edema out. Just keep remembering to drink a good amount of water or other fluids during the day. Keep track of your potassium levels (if you do use a diuretic), usually one banana a day helps to keep it in check. I think the side effects you mention here are very manageable and probably do not warrant thinking about switching to BMS at the time. Besides, as long as you are PCRU on Gleevec (I am too) they probably wouldn't allow the switch. Why mess with something when it is working? However, I do pick up a bit of frustration in what you say, and here too I can totally relate. We woman do have special issues that should be addressed as it would certainly improve our quality of life - I am working on that! That it is quite neat that you are a theology teacher; although raised as a catholic, I have always enjoyed studying many of the worlds top religions and this summer after studying for 7 years I became an ordained Buddhist while on a retreat with Thich Nhat Hanh. It was an awesome experience. The Buddhist path goes well with many of the worlds top religions. It would be nice to meet you one day and have a nice discussion. Oh, and about the announcement, I can say it will be totally not for profit! Love, blessings and all good things. Cheryl-Anne --- In , " Barb Stanley " <barbarastanley@c...> wrote: > > Hello Cheryl Anne > > I really enjoyed your post. What a day to be diagnosed on! I always read your posts > as they are incredibly informative and I wanted to thank you for all the work you do > in that regard. I appreciate the trips to conferences and the reports you write for > all of us. It affords us the information we might otherwise miss. Several times, it > has given me hope as well. For me, information is power. > > I was diagnosed on 5-5-02. I am coming up on my 4th anniversary in May ( I am 54). I > try to work full time (I teach theology at a Catholic School in sdale) and most > of the time I can do well. I have recently traveled through menopause and with that > and gleevec, the oncologist believes that I am suffering from edema (especially lower > arms and legs) as a result of those two things. I never had edema (other than around > the eyes) before on gleevec, but evidently, it decided to come now. It is bad enough I > have lost a great amount of mobility and I take 600 mg Advil every 5 hours to get > through the day. I am thinking of checking out MDACC for the BMS Trial if it continues > to get worse. I realize I would be trading side effect for side effect. But I want to > be able to continue to work. > > I am connected with City of Hope here in Phoenix and checking out any trials they may > have as well. Although I don't think they have the BMS. I almost think I just need a > consult with MDACC to see what other options are out there for me. We will see. > > I consider myself very lucky to be PCRU on 400 mg. > > > > I wait anxiously for the announcement - and am sure it will be nothing less than > sterling. > > > > My best to you and good health to all. > Barb in AZ > > > > > > > > > > > > Message: 3 > > Date: Thu, 24 Nov 2005 10:19:26 -0500 > > From: " Cheryl-Anne Simoneau " <cheryl.simoneau@m...> > > Subject: Happy Thanksgiving and a celebration of my 5th anniversary of Diagnosis > > > > Hello All, > > > > Today marks my 5th anniversary of diagnosis with CML. Much like today, I > > greeted that day five years ago with anticipation of the day's celebration > > even though I was not feeling well. A side trip to the hospital for a > > totally un-related event led to a not so routine blood test where my world > > collided with cancer, leukemia, and more specifically CML. In many ways, > > being diagnosed on Thanksgiving was a blessing in disguise. I was reminded > > to be thankful and grateful that although this diagnosis was probably > > inevitable (I had worked for many years as a radiology/nuclear medicine > > sales rep) I had the good fortune to find myself in good care at the McGill > > University Health Centre here in Montreal (I am an American living in > > Canada) and with a top doctor in Canada, Dr. Pierre Laneuville. > > > > Much in my life has changed, how could it not? In the early days, I thought > > I would not want to be vocal about CML and life with cancer in general. > > After loosing my job because of CML (small time employers were worried about > > the cost of this drug and the impact on their modest health care plan), the > > subsequent law suit (which not surprisingly I won, but for me it wasn't > > about the money, it was about the principle) - well let's just say it is a > > woman's prerogative to change her mind! > > > > Today, while I have recently gone back to work full time, I do whatever I > > can to help other CML patients by organizing information sessions, helping > > people find doctors, access to drugs and sometimes just hugging and > > handholding when times get tense. So, while I do not post much I am still > > very active in this community. > > > > Stay tuned, in a very short while there will be an announcement of the > > creation of an organization totally dedicated to support, educate and > > advocate on the behalf of all CML patients. It's been a lot of work but it > > has been lots of fun! > > > > Blessings and warm wishes of peace love, gratitude and health - may we all > > be happy and healthy! > > > > Cheryl-Anne > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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