New Member
Posted 03 May 2012 - 04:09 PM
I got a call from U of M with my FISH and PCR results. My FISH was 0% and my PCR was 0.6%. He said it was great and better than they would expect and to keep doing what I'm doing. YAY! How funny that my other oncologist said I could only find this out from a BMB? Hmmm???? SOOOO glad I went for a second opinion.
So what does it mean exactly when the FISH is 0%? This means I'm in a CcyR and an MMR, right?
HAPPY DANCE!!
Laura.
New Member
Posted 03 May 2012 - 06:39 PM
since a FISH level measures the presence of CML it souuuunds like you're in the clear to me! That's awesome! Congratulations!!!! Make sure to just confirm that before you throw a party, though
Advanced Member
Posted 03 May 2012 - 08:58 PM
Congratulations Laura: You must be so relieved that you went for that second opinion. I am curious what your regular Oncologist will say now. I think you can just be checked through PCR's now. No more BMB. Once I got to a Ccyr I never had another BMB. See what other responses you get as everyone reads your good news.
New Member
Posted 03 May 2012 - 09:14 PM
Definitely time for a happy dance! Congratulations!!
Guest_billronm_*
Posted 03 May 2012 - 09:20 PM
Congratulations, I'm doing the happy dance for you too! Good Luck Billie Congrats on no bmb too!
Advanced Member
Posted 03 May 2012 - 09:37 PM
Congratulations, Laura.
You are definitely CCyR. If those results are on the International scale you will be MMR when you reach 0.1%!
Way to go!
Pat
Pat
"You can't change the direction of the wind but you can adjust your sails."
DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>
Member
Posted 03 May 2012 - 10:03 PM
Three cheers for 0% FISH!!!! That's wonderful. Happy for you!
Lori
DX 09-2011 PCR 8.08 not IS WBC 17 , Began Tasigna 600mg
in 2012 Tasigna 450mg/day ,in 2013-2017 Tasigna 300mg/day
DATE/PCR
09-11/ 8.08 not IS
03-12/ 0.054 not IS
06-12/ 0.035 not IS
09-12/ PCRU, 01-13/ PCRU
4-13/ 0.042 IS
7-13/ 0.014 IS
11-13/ PCRU, 04-14/ PCRU
8-14/ 0.006 IS
PCRU: 12-14/ 05-15/ 10-15/ 02-16/
09-16/ 02-17/ 09-17/
10-17 tapered off
11-3-17 Stopped Tasigna
1-15-18 still PCRU
Member
Posted 03 May 2012 - 11:09 PM
Laura,
Congrats, You will live long and happy life and do many happy dances and we will all dance around you!!
PamSouth
PamSouth
New Member
Posted 03 May 2012 - 11:34 PM
Thanks everyone! I'm actually going back to that oncologist later this month. Dr. Talpaz said he did a good job with putting me on the meds and monitoring me. If he won't see me because I refuse BMBs then I will move on but due to some other circumstances I am still seeing him. No BMBs though!
Member
Posted 03 May 2012 - 11:52 PM
Luvmybee,
I guess I have forgotten the original thread. Did you say Dr. Talpaz refused to see you as a patient because you refused a BMB?
I think that is the first time I have heard of that. I have not had a BMB since 2006.
However when I recently changed over to a new oncologist, the nurse called and said he wanted me to do a BMB. I told the nurse I had two bad experience with BMB, that I had to have pain pills, patches, and ice for weeks,,,,, That I have sever bone pain/ problems, and often go to physical therapy. The nurse talked to the doctor and she said he understood, so it didn't become an issue. So I would have changed oncologist, as I can't stand to go thru that again, it is just to painful. Have had issues on and off with irregular heartbeat for about a year. Fell and sprained ankle a couple of weeks ago and heart is irregular again, but I think it is getting better, I have a cuff. Anyhow my heart just wouldn't take it. I'm talking the pain from the BMB lasted for weeks afterward.
PamSouth
PamSouth
PamSouth
New Member
Posted 04 May 2012 - 12:03 AM
NOOOO! Dr. Talpaz told me I DIDN'T need a BMB. He was my 2nd opinion. My first oncologist insisted I have a BMB and even told me FISH couldn't be done on peripheral blood. Hmmm....that turned out to be wrong!
I am the same as you. I had my BMB in November and I am STILL in pain. It hurts when I exercise and I exercise 3-4 times week. It took a complete month after the BMB before I could go without Vicodin. Never again!
Laura.
New Member
Posted 04 May 2012 - 12:14 AM
Hi Pam,
I often wonder whether they just feel the need to have a look for themselves. If they ever have to experience a BMB they might change their minds.
I had no trouble with either of mine, though I almost laughed out loud when during the second one (with my new specialist) the nurse commented that they gave light sedation so you didn't have nightmares from the procedure. Too late for that I thought as my original was done under a local anesthetic and wasn't the worse thing I ever experienced anyway.
Member
Posted 04 May 2012 - 12:29 AM
Luvymbees
Wonders never cease, hard to believe an onc would think that we wouldn't check it out. If your brand new you might be fooled once or twice but it doesn't take long to catch on. I think things have changed a lot where people are educating themselves and are challenging the doctors. I mean these are very serious issues and it is our life and mistakes are sometimes made.
Yea that first BMB was to get a diagnoses. He did give me a sedation in an IV, but when the sedation worn off I just about came unglued. A year later I flew to MD Anderson and they wanted to do a BMB too. Well I thought hey I'm sure they know what there doing here at this place. I mean the place is so big and they must do hundreds, but it was even worst then the first. When an oncologist talks to me about having one, they act like they have some kind of magic that it will be a piece of cake, but Hey after two times the third time I'm thinking I would just be a fool a sucker to fall for that again. I guess some people have them with little discomfort but not me.
Gerry, That is cute even the nurse gave you a heads up "sedation so you don't have nightmares. Hum what does that tell you? So one should write a cartoon with the oncologist getting a BMB and see his reaction.
Pamsouth
PamSouth
Advanced Member
Posted 05 May 2012 - 05:48 AM
Hey, that's such great news Laura - congratulations! Is this your 3-month test or 6? I can't remember...either way, it's a great result!
Diagnosed 9 June 2011, Glivec 400mg June 2011-July 2017, Tasigna 600mg July 2017-present (switched due to intolerable side effects, and desire for future cessation attempt).
Commenced monthly testing when MR4.0 lost during 2012.
2017: <0.01, <0.01, 0.005 (200mg Glivec, Adelaide) <0.01, 0.001 (new test sensitivity)
2016: <0.01, <0.01, PCRU, 0.002 (Adelaide)
2015: <0.01, <0.01, <0.01, 0.013
2014: PCRU, <0.01, <0.01, <0.01, <0.01
2013: 0.01, 0.014, 0.016, 0.026, 0.041, <0.01, <0.01
2012: <0.01, <0.01, 0.013, 0.032, 0.021
2011: 38.00, 12.00, 0.14
New Member
Posted 05 May 2012 - 03:42 PM
That's great news! Ideally, your local oncologist will consult with Dr. Talpaz if you have questions about your treatment. If not or if he gives you a hard time about refusing the BMB, I hope you find someone else that you like.
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