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"Heavy" feeling with gleevec


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#1 jmoorhou

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Posted 14 June 2014 - 02:30 PM

Hello All, I hate the keep bringing up negatives, but I just went on 300 mg vs. 200 (got some skins rashes due to having to take amoxicillan, fyi I have found Kefir to be very good at maintaining gastrointestinal  bacteria...had about a quart yesterday and rashes are going away)...any way back to subject at hand.  I felt my regular self at 200 mg.  This morning after taking 300 mg, felt "heavy" again, more edema in face.  Do you think edema is what causes this....just hope it's nothing to do with the heart....I was going to workout do some rowing and cycling .... and didn't have the energy...

Again, highly recommend kefir over yogurt for maintaining tummy health (which is 70 percent of our immune system btw)....it has 30-50 active cultures vs. 3-5 with yogurt.  I use it in smoothies now.

Hope you're having a fun weekend!


Diagnosed 3/2014 WBC 28 Non detectable within 3 monthsGleevec 400 mg 5/2014 one hour after dinner really improves nausea300 mg 12/15/2016200 mg and 300 mg Gleevec 2/25/2017 (after 3 years on Gleevec) For last four months taking 300 mg per day. Last CMC showed liver enzymes elevated, went to a good Naturopath and he recommended 4 Tumeric, 10,000 mg Vitamen D, and 3 milk thistle (silymarin) daily. Also use One<p>Day Detox Dandeloin tea, and Nettle Tea and a slice of ginger every day...in two months liver tests were below normal.Janis

#2 jmoorhou

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Posted 15 June 2014 - 04:16 AM

I'll answer my own question....the best way to get rid of the "heavy" feeling is to do some exercise, for me 30 min. rowing machine, 15 minutes cycling....


Diagnosed 3/2014 WBC 28 Non detectable within 3 monthsGleevec 400 mg 5/2014 one hour after dinner really improves nausea300 mg 12/15/2016200 mg and 300 mg Gleevec 2/25/2017 (after 3 years on Gleevec) For last four months taking 300 mg per day. Last CMC showed liver enzymes elevated, went to a good Naturopath and he recommended 4 Tumeric, 10,000 mg Vitamen D, and 3 milk thistle (silymarin) daily. Also use One<p>Day Detox Dandeloin tea, and Nettle Tea and a slice of ginger every day...in two months liver tests were below normal.Janis

#3 Guest__*

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Posted 15 June 2014 - 08:35 AM

Hi Jmoorhou,

I take 300 mg. GLEEVEC 4 days and 400 mg. 3 days a week, and have noticed that the days that I take 400 mg. I have more edema in face. I love Kefir, but it has to be strawberry flavour. Have a nice day!

ACG.



#4 Susan61

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Posted 15 June 2014 - 01:08 PM

Hi Adela:  I have never heard of alternating dose of Gleevec like your Oncologist is doing.  Sorry, but I have a bad feeling about this guy.  I saw your post saying it takes 6 weeks to get results, and that is unheard of also.

I would definitely get an appointment with another Oncologist to be sure your being treated properly.

When I was diagnosed, I went to other doctors for 2nd and 3rd opinions to be sure I was on the right treatment.

My Oncologist was excellent, and I was familiar with his reputation, as I had been his secretary for years.  When he started pushing for the bone marrow transplant (BMT).  I searched out other options, and thats when I found the clinical trial for the Gleevec.  As good as he was he did not agree with me doing the Trial, until he saw the great results I had.  Then he had me talking to his other CML patients to share what I knew and was going through.  You have to remember they are just human beings who make mistakes like anyone else.

ITs your body, and you have to speak up.  Hope the results come back good.  I have been on 400mg since day one, and no adjustment to my dose due to it working very well for me.  Some people get cut back to 300mg, and some have been on 200mg, but not alternating doses.

Susan






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