Guest guest Posted April 7, 2008 Report Share Posted April 7, 2008 Sharon My mouth is hanging open. My mom died of complications with drugs/liver tumors from all the drugs for CLL in Nov. 2001. I was diagosed in May of 2002 with CML,. Mom was on hydroxurea and various drugs for 11 years. She was 82 when she died. I was 51 when diagnosed. Again, my mouth is hanging open. They say it is not genetic. I also know that the farming community I was raised in had herbicides, pesticides, and a carbon plant in the town. There is investigation going on as I write to check out benzine levels ( a marker for leukemia). Barb in AZ > > New Subject: > > Hi.I was just going through some old papers-cleaning our a file and I came > across some medical papers from my mom. > > She was dx in 96 with CLL... I knew that she had had Lymphoma. But while > reading the papers I realized that the symptoms are almost exactly like CML. > High WBC high Platelts-etc. They put her on Chemo. Medications I never > heard of. She did go into remission for a few years but then died in > 2001.I remember that she had so so many complications with all the > medications she was taking. We were pulling our hair out trying to tell the > doctors that the meds were killing her. > > > > My question to anyone: Do you think I have CML because she had CLL? Are > they related and could it be genetic??? I tell you one thing---I feel very > very fortunate to be here today!!!! We are so lucky and should thank those > doctors that came up with our medication..Not for them we would nont be > here. > > > > Would appreciate your input.My mom was 82 when she died. A terrible time!!! > We hated seeing her go like that. > > > > Sharon > > On Tasigna for l month and doing real real well!!! > > > > _____ > > From: [mailto: ] On Behalf Of Eva > Sent: Sunday, April 06, 2008 1:53 PM > > Subject: Re: [ ] For Eva > > > > Hi ; I go to the oncologist every Wednesday right now . My WBC counts > have gone from 231 to 209 to 127 in 3 weeks , I just started my Gleevec on > Last Wednesday night and these muscle spasms started on Thursday night. I go > to the docs again this Wednesday. Now that I am getting Gleevec I am only on > 2 Hydrox instead of 3. We will see what happens , I am actually a little > more comfortable today . Hope to go to work tomorrow. Thanks Eva > > From: Cogan > Sent: Sunday, April 06, 2008 4:22 PM > groups (DOT) <mailto:%40> com > Subject: [ ] For Eva > > Thanks Ed. , My dx was confirmed on March 12. I am still on 2 Hydrea, 1 > Allopurinol and 400 mg Gleevec. I just can't miss anymore days off work. I > had a hot shower this morning with one of those shower massage things and > it helped. I am keeping my figures crossed and thinking good thoughts. Take > care . Eva > _______________ > Hi Eva, > > It is not real typical to stay on hydrea after you start Gleevec. Some > doctors will use hydrea to get the white count quickly down to 20,000 (with > the allopurinol) but then start Gleevec and not take hydrea.....OR if the > white count is higher than 20,000 when you start Gleevec, also take > allopurinol. I don't know how often your oncologist is having you get a CBC > blood test, but on the combination of both hydrea and Gleevec, your white > blood count could drop quickly.....and this could also be a reason for > having more intense side effects such as cramping and pain. I would try to > get a blood test soon and then talk to your doctor about getting off the > hydrea. > > Using cold, such as ice packs, is also good for pain relief and relief of > muscle spasm. Use for about 20 min. until the area is numb to the cold. > Best wishes, > C. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2008 Report Share Posted April 7, 2008 Wow!! Now my mouth is hanging open. How ironic. My mom was not on Hydroxurea. I do not think they had it yet. She was dx in 1996 I know she was on cytoxan, prednisone, and maybe fludara.Not really sure. Just names I could make out in my emails to another support group at that time. I was doing it for her. I wanted to understand her disease. Well I am wondering if it is indeed genetic. You mention Carbon plant? I worked in SF in a copy machine office " Gestner " we made copies all the time. I know the stuff had benzene. Then I worked in a " steno Pool " at California State University. We used to do copies on mimeograph machines and ditto machines. Do you remember those? I've been told that that is probably where I picked it up. But then I was raised in Hawaii and I am sure a lot of pesticides were used in the cane fields. Who knows? I am just so so thankful for the medication and support we now get. I am a grandmother and I want to live long enough to see my grandchildren go to college, marry and have children-that is stretching it a little.I am 65 I was dx in July of 2004. started with gleevic. For a little under a year, actually 6 months. Got terrible side affects. Bad bad rash. Went on to sprycel for three lovely years and then got Plural effusion and many other bad things.All this time I was PCRU. I am now on Tasigna, have been for a month and I have never felt better in 5 years. And my blood counts have never been better. I live day to day and take everything in. I do not take anything for granted. I just hope and pray this good spell keeps up for me for a long long time. I only take 400mg. Nice hearing from you. Very ironic situation. Sharon Dx 2004 On Tasigna From: Discovery Bay, Ca. _____ From: [mailto: ] On Behalf Of Barb Stanley Sent: Sunday, April 06, 2008 5:25 PM Subject: [ ] Sharon Sharon My mouth is hanging open. My mom died of complications with drugs/liver tumors from all the drugs for CLL in Nov. 2001. I was diagosed in May of 2002 with CML,. Mom was on hydroxurea and various drugs for 11 years. She was 82 when she died. I was 51 when diagnosed. Again, my mouth is hanging open. They say it is not genetic. I also know that the farming community I was raised in had herbicides, pesticides, and a carbon plant in the town. There is investigation going on as I write to check out benzine levels ( a marker for leukemia). Barb in AZ > > New Subject: > > Hi.I was just going through some old papers-cleaning our a file and I came > across some medical papers from my mom. > > She was dx in 96 with CLL... I knew that she had had Lymphoma. But while > reading the papers I realized that the symptoms are almost exactly like CML. > High WBC high Platelts-etc. They put her on Chemo. Medications I never > heard of. She did go into remission for a few years but then died in > 2001.I remember that she had so so many complications with all the > medications she was taking. We were pulling our hair out trying to tell the > doctors that the meds were killing her. > > > > My question to anyone: Do you think I have CML because she had CLL? Are > they related and could it be genetic??? I tell you one thing---I feel very > very fortunate to be here today!!!! We are so lucky and should thank those > doctors that came up with our medication..Not for them we would nont be > here. > > > > Would appreciate your input.My mom was 82 when she died. A terrible time!!! > We hated seeing her go like that. > > > > Sharon > > On Tasigna for l month and doing real real well!!! > > > > _____ > > From: groups (DOT) <mailto:%40> com [mailto:groups (DOT) <mailto:%40> com] On Behalf Of Eva > Sent: Sunday, April 06, 2008 1:53 PM > groups (DOT) <mailto:%40> com > Subject: Re: [ ] For Eva > > > > Hi ; I go to the oncologist every Wednesday right now . My WBC counts > have gone from 231 to 209 to 127 in 3 weeks , I just started my Gleevec on > Last Wednesday night and these muscle spasms started on Thursday night. I go > to the docs again this Wednesday. Now that I am getting Gleevec I am only on > 2 Hydrox instead of 3. We will see what happens , I am actually a little > more comfortable today . Hope to go to work tomorrow. Thanks Eva > > From: Cogan > Sent: Sunday, April 06, 2008 4:22 PM > groups (DOT) <mailto:%40> com > Subject: [ ] For Eva > > Thanks Ed. , My dx was confirmed on March 12. I am still on 2 Hydrea, 1 > Allopurinol and 400 mg Gleevec. I just can't miss anymore days off work. I > had a hot shower this morning with one of those shower massage things and > it helped. I am keeping my figures crossed and thinking good thoughts. Take > care . Eva > _______________ > Hi Eva, > > It is not real typical to stay on hydrea after you start Gleevec. Some > doctors will use hydrea to get the white count quickly down to 20,000 (with > the allopurinol) but then start Gleevec and not take hydrea.....OR if the > white count is higher than 20,000 when you start Gleevec, also take > allopurinol. I don't know how often your oncologist is having you get a CBC > blood test, but on the combination of both hydrea and Gleevec, your white > blood count could drop quickly.....and this could also be a reason for > having more intense side effects such as cramping and pain. I would try to > get a blood test soon and then talk to your doctor about getting off the > hydrea. > > Using cold, such as ice packs, is also good for pain relief and relief of > muscle spasm. Use for about 20 min. until the area is numb to the cold. > Best wishes, > C. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 3, 2008 Report Share Posted August 3, 2008 Sharon, I'm so glad you have another doctor. He sounds like he knows what he is doing, much more than your first one. Boy, one sure has to be proactive and making sure you are looking after No. 1 - you. It has taken me a lot of years to stop putting them on a pedestal where they can do no wrong - I now question many things. AND, thank goodness for this site and all the wonderful CML members who can help us with our thinking processes! Hugs, Judy P. in Calgary __________________________________________________________________ Get a sneak peak at messages with a handy reading pane with All new : http://ca.promos./newmail/overview2/ Quote Link to comment Share on other sites More sharing options...
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