New to Forum
Posted 14 November 2015 - 05:53 PM
Posted 16 November 2015 - 05:31 PM
I'm Carol and I found the forum about a month ago so I am really new as well! I was diagnosed in June and am on Sprycel too. I have leaned a lot from reading all of the different posts and will have many more questions for my onc when I see him next! I think you will find it is so helpful to know other people are going through the same thing and that you are not alone in this! That has been my experience anyway...
Posted 17 November 2015 - 06:01 PM
BMB 9:22 translocation
1/19/15 began 400 mg gleevec
1/22/15 bcr 37.2 IS
2/6/15 bcr 12.5 IS
3/26/15 bcr 10.3 IS
6/29/15 bcr 7.5 IS
9/24/15 bcr 0.8 IS
1/4/16 bcr 0.3 IS
Started 100 mg dasatinib, mutation analysis negative
4/20/16 bcr 0.03 IS
8/8/16 bcr 0.007 IS
12/6/16 bcr 0.002 IS
Lowered dasatinib to 70 mg
4/10/17 bcr 0.001 IS
Lowered dasatinib to 50 mg
7/5/17 bcr 0.004 IS
8/10/17 bcr 0.001. Stopped TKI in prep for September surgery.
9/10/17 bcr 0.006
10/10/17 bcr 0.088
Posted 17 November 2015 - 06:38 PM
Posted 17 November 2015 - 08:42 PM
Hi to both of you - I am really happy to have found this forum as well - I feel so alone sometimes- I have found that just because I have not lost my hair and am not "knocking on deaths door" people think I am exaggerating when I say I don't feel well - I even had a friend tell me that i don't have "real " cancer - it makes me feel bad and it also makes me feel like I have no right to complain because I am not dying- so I am so happy to have found a group of people that share my same disease and that " get it" !!- thanks, Marta
I know exactly how you feel. I have great support from family and friends. From others, I think they only care insofar as how it affects them. For example, I had a coworker recently tell me she was going to have a surgery. I made it a point NOT to ask how long she'd be off work, because I remember "how long will you be off work?" was the number two question I was asked a few years ago when I had to have an abdominal surgical procedure. If they had really cared about my well being, my peers would not have asked how long I'd be off work.
Posted 18 November 2015 - 12:55 PM
Welcome aboard! I have found true comfort on this forum. Its nice to know other peoples experiences so that we may realize we are not alone or crazy. Just because we have "the good cancer"... as people that have never walked this life like to say...does not mean that we have our old lifestyle back. Some get lucky enough that they do take the TKI's and have little to no side effects. But most of us struggle from time to time with physical and/or emotional issues that go along with a chronic illness. I am lucky enough that I clicked with a great friend from here. Having one on one or group conversations about the reality of day to day life with cml really helps most of us. And those conversations are priceless when the person on the other end REALLY knows exactly what we are saying. I cant empasyze enough on the benifit that I get from talking to my best cml friend!!! She knows who she is!
Diagnosed in September 2011. Tried one year of Sprycel. Had great response. Became undetectable in a few months. Changed to Tasigna hoping for less side effects. Self medicated myself down to 20% dose and held for 3 years before becoming detectable again. It has been a journey that has helped me realize what life is about! I am all about a balanced life. I firmly agree with my decision to lower my dose. What is life if you aren't living? Mine will never be the way it was, but it is going to be as good as I can make it! Drs PRACTICE medicine, we can guide our dr to help us with a better life! Don't settle until it's acceptable to you!
Posted 18 November 2015 - 02:21 PM
Posted 19 November 2015 - 11:14 AM
1) what should I be looking in my blood work ?
2) What are the "markers" I should be meeting ?
3) as far as side effects - I have a great deal of pain in my right knee, my left ankle and my right hip - is this a side effect of the Sprycel ? Do I need to contact my onc ?
4) I have noticed that my breathing has become labored but my lungs are clear - stress maybe ?
I have more questions but I will start with these - thank you guys for offering me the SUPPORT and UNDERSTANDING that I have needed since my diagnosis!!! ( and sorry if my questions seem dumb!!) Marta
Posted 19 November 2015 - 11:48 AM
Then go here:
Diagnosed 11 May 2011 (100% FiSH, 155% PCR)
with b2a2 BCR-ABL fusion transcript coding for the 210kDa BCR-ABL protein
Sprycel: 20 mg per day - taken at lights out with Quercetin and/or Magnesium Taurate
6-8 grams Curcumin C3 complex.
2015 PCR: < 0.01% (M.D. Anderson scale)
2016 PCR: < 0.01% (M.D. Anderson scale)
March 2017 PCR: 0.01% (M.D. Anderson scale)
June 2017 PCR: "undetected"
September 2017 PCR: "undetected"
Posted 19 November 2015 - 02:10 PM
martap999 & surfdaisy76 - Welcome to both of you! This place is definitely a God-send! There are so many times I will read what someone says, and thing OMGosh, it's not 'just me'! I never thought I would have the reactions of others that I have had - both good and bad, but some really hurt. When I see that I'm not alone, it doesn't seem to hurt as much. Stay close. You won't regret it.
tazdad08 - I have often wished I could have a personal conversation with someone I really related to. Can you tell me how to do that?
scuba - You have helped me in many ways: knowledge, humor, and most of all hope. You helped me specifically when I was having some real stomach pain and had gotten some medicine from a specialist - you taught me broccolli works wonders!! Don't expect you to remember, but thanks again anyway. Never give up! Blaze the trail for us all! ;0)
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