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full remission
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Just curious about how long does it take to achieve complete remission with CML. My husband was dx with CML about a year ago with 80% cancer cells. He was taking the sprycel for about 9 months and then stopped because of side effects. He's been taking the gleevec for about 3 months and its been working. His last FISH test was about 3 months ago. Tests showed less than 1% cancer cells. He just had another test last week and it was about the same as last time. Doctor was very happy. Doctor said he was having a Major molecular response but not yet a complete remission. I assume all is well. How long does it take for remission to come???
Posted on 01/18/12, 11:15 am
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Reply #1 - 01/21/12  5:19pm
" Sounds like your husband is doing well on the Gleevec. I have been on Gleevec since Oct. of 2000. I did reach a Cytogentic remission quickly, and it took me till 2003 to reach a major molecular response with a PCRU reading. I have been undetected now for 9 years. Been on 400mg. since day 1, with no changes in dose at anytime.
Give the Gleevec time to do its job. I know a lot of people who have been living with CML for over 15 years and have not reached the MMR. So just know that you can live a long life either way.
I still suffer with side effects like hand and foot cramps. Fatigue, weight gain., eye edema. None of this has effected my life in a traumatic way. You just learn to live with it all, and Thank God Each Day. "
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Reply #2 - 04/23/12  12:19pm
" You husband is doing very well. Don't worry about a full remission. There is no remission with CML. We just get a "drug response" that is monitored by a test called a "PCR". Right now he is MMR. That is great. If he stays there for the rest of his life, he will outlive the disease. In the CML world, at this time, low is good. Most people do not achieve PCRU, which is undetectable on the PCR, a test that looks for the rogue protein that signifies CML. "
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Reply #3 - 05/08/12  10:48pm
" Hello,

My mame is Elesia and I was 71% cancer cells. Within 6 mos. the FISH test showed complete remission, no cancer cells detected. I am now taking 100mg of Gleevec. "
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Reply #4 - 05/09/12  5:38pm
" Hi Elesia: If your FISH test showed that you are in remission, then that means that there are no cancer cells seen which puts you in a Complete Cytogenetic Response, or what we call CCYR, but that does not mean that there are no cancer cells still floating around. If you achieved a CCYR, then you should be getting a PCR Blood Test at this point which will still show there are some cells. The goal with a PCR test is to get a result back of 0.000 to be in a Complete Molecular Remission. The Fish test shows so many thousands of cancer cells, but a PCR test shows millions of cells. I do not want to confuse you, so write down what I just said and ask your Oncologist about this. Also, you do not get cut down to 100mg of Gleevec at this point. Just to give you an example of what has been done with me. I have been on 400mg.of Gleevec for 11 years, and I have been in a Molecular remission for 8 years. At my next visit I might be cut back to 200Mg of Gleevec. I would really like to help you. Be very Happy with the response you have gotten, but I just want to be sure you understand how it all works. I have had CML since 1998. You can send me a private message if you want to in case you do not understand what I am saying. "
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Reply #5 - 05/10/12  8:07pm
" Hi Susan,

Thank you for your response. My Oncologist stated i was in complete molecular remission after using 200mg of Gleevec. I was diagnosed with CML in March 2011 and began taking 400mg of Gleevec. While taking the 400mg, I had such a severe side effect; I was diagnosed with severe Leukemic cramp and lost the use of my right hand. My Oncologist changed the dosage in April 2011, due to the side effect, to 200 mg of Gleevec. In October 2011, he did a blood test and in three weeks he sent me an email stating the results showed I was in complete molecular remission. Since October 2011, he dropped the dosage from 200mg to 100 mg of Gleevec. (All Praises to GOD!)
I am very new to all this and would love to be further educated about CML.
Thank you in advance for your help. "
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Reply #6 - 05/12/12  10:33pm
" The only way to tell if you are in Remission is to stop taking the Gleevec. I have reached PCRU and if I can maintain it for two years will be discussing with my doctor about the possibility of coming off the medication. In the meantime I will be aiming for a dosage reduction when I next see my doctor - down to 300mg to start with.
The confusion is what type of test you are quoting. A FISH test of zero is CCyR which is only half way along to PCRU / CMR. You would need to be getting a negative on a PCR test to be CMR.
It is great that your body is responding to such a low dose of Gleevec, for the majority of us 100mg wouldn't hold back the CML. "
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Reply #7 - 06/02/12  4:25pm
" Hello,

Thank you for all your input. I need to become more familiar with the test I am taking. I mentioned that I began taking 400mg Gleeve but each pill is 400mg and my Oncologist started me out on 2 pills a day. I had such a severe side effect, loss of use of my right hand, he switched me to 600mg Tasigna. The side effect from Tasigna was worse, so I went back to Gleeve but 400mg. The tests so far that I do know are the regular CBC and Fish test and one my Oncologist started with to see if I had CML called a genetic test.

The genetic test in October 2011 showed no signs of cancer as he stated, so he dropped the Gleevec to 200mg. He said I showed such quick response he wanted to see how my body would tolerate the lower dosage. This is due to the side effects from the higher dose of Gleevec, no ability to use my right hand until he lowered the dose. Since I was showing such excellent results with Gleevec and significant improvement with regaining mobility in my right hand, he dropped my dosage to 100mg.

I had a genetic test in February 2012 after being on 100 mg of Gleevec and the results were the same, complete remission. I am still taking 100mg Gleevec daily but since my most recent blood test June 2012 and the results were so amazingly good, I am going to ask if I can take 100mg Gleevec every other day instead of daily.

I have cramping in my feet and had to see a Acupuncturist on two occassions for my right hand. I am now experiencing the same side effect with my left hand. Since all my test result are showing remission, I want to see if reducing the medication further will alleviate the problems with my hand and the occassional cramping in my feet. However, the side effects are not problematic enough to stop or alternate the chemo if it means staying in remission.

May God Bless us all and I pray for your continued healing and remission of CML. "
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Reply #8 - 06/30/12  11:14pm
" Hi Elesia: Now I have a better picture of what you did. You were on 800mg of Gleevec a day in the beginning. The usual dose is 400mg a day which Is the highest I have ever taken. So you are saying that through your PCR test that you are PCRU now. I have been PCRU since 2003,and my reading is 0.000. I would like to cut back my dose of Gleevec due to the severe foot cramps, fatigue, and my platelet count has been dropping. I see my Oncologist in a few weeks, and I would be satisfied to cut back to 200mg to see how I do.
God Bless Everyone who is trying to beat this disease. Maybe we all get to see it in our lifetime. "

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