Jump to content


Photo

Still MMR...


  • Please log in to reply
10 replies to this topic

#1 hannibellemo

hannibellemo

    Advanced Member

  • Members
  • PipPipPip
  • 728 posts
  • LocationNorth Central Iowa

Posted 24 February 2012 - 08:01 PM

and I'll take it!

Yesterday's BMB/A will be my last if I have anything to say about it. The marrow looks great according to Dr. L, and this is my 4th MMR so we will have a serious discussion if he wants to do another BMB unless something goes really wrong with my counts. Don't have all the numbers, I hate getting my results over the phone, but he's sending the reports so I will know them soon.

I have great respect for all oncologists but especially for those that specialize in leukemia. I imagine they haven't had the opportunity to deliver much good news to their patients over the years until recently and Dr. L has been a physician for a long time. I can appreciate that he is cautious even though he is on top of the latest developments and has my best interests in mind - but we'll still have that discussion!

Hope everyone has a great weekend.Be sure and think warm, snow and ice melting thoughts for Marnie!

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>


#2 GerryL

GerryL

    New Member

  • Members
  • Pip
  • 0 posts

Posted 24 February 2012 - 09:25 PM

Hi Pat,

Congratulations on maintaining your MMR.

I understand about disliking phone calls, my (second) specialist did that to me initally when he did the BMB . But it has become easier since I only get blood tests for PCR nowadays. I get the report off my GP before I go to the specialist - a lot better than being rung at 8.30 on a Friday night.



#3 Judy2

Judy2

    New Member

  • Members
  • Pip
  • 0 posts

Posted 24 February 2012 - 10:27 PM

Hi Pat,

Congratulations on maintaining your MMR and hopefully to the end of BMB!!!

Judy



#4 Pin

Pin

    Advanced Member

  • Members
  • PipPipPip
  • 202 posts

Posted 25 February 2012 - 12:07 AM

Great news Pat! :)


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


#5 PhilB

PhilB

    Advanced Member

  • Members
  • PipPipPip
  • 130 posts

Posted 25 February 2012 - 03:00 AM

Congratulations Pat. Buy your doctor one of those springy grip things for strengthening his hand and wrist, then explain that he'll need it as you're not letting him get a work out drilling holes in your butt any more!

Phil



#6 pammartin

pammartin

    Advanced Member

  • Members
  • PipPipPip
  • 631 posts
  • LocationPennsylvania

Posted 25 February 2012 - 08:42 AM

Hi Pat,

Awesome news, congrats on the continued response and success!  Have a great day!

Pam



#7 Happycat

Happycat

    New Member

  • Members
  • Pip
  • 5 posts

Posted 25 February 2012 - 12:50 PM

Great news, Pat!  I'm hoping for the same results - get my PCR blood test on Monday!

traci



#8 Tedsey

Tedsey

    Advanced Member

  • Members
  • PipPipPip
  • 85 posts

Posted 25 February 2012 - 05:18 PM

Awesome Pat!!!!!!!  I am so happy to hear you are doing so well!  Yeah!!!  Here is to no more holes!!!!!

Teds



#9 hannibellemo

hannibellemo

    Advanced Member

  • Members
  • PipPipPip
  • 728 posts
  • LocationNorth Central Iowa

Posted 25 February 2012 - 09:23 PM

Thank you, Teds, Traci, Simone (I know you're out there), Pam, Phil, Pin, Judy and Gerry and everyone else going through these good and bad moments together.

You all make the bad times so much better and the good ones, fantastic!

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>


#10 GerryL

GerryL

    New Member

  • Members
  • Pip
  • 0 posts

Posted 25 February 2012 - 09:32 PM

I've got my fingers crossed that when you get the actual report, it will show you're still tracking downwards, if somewhat slowly.

                 



#11 Susan61

Susan61

    Advanced Member

  • Members
  • PipPipPip
  • 43 posts
  • LocationNew Jersey

Posted 25 February 2012 - 10:07 PM

Hi Pat:  What Fantastic News!!  I stopped having BMB back in 2001, and when my doctor retired and I saw the new doctor that took over his practice he wanted to do a BMB to look for a mutation.  I told him no way.  I said if I am PCRU for years now, and he argued with me that I had to have it.  I think he was just trying to make some money for his new practice.  I walked out, and never went back.  Then I found out he only started practicing as a Oncologist that year.

I say we have to be our own advocate at times for our care, no matter what degree these guys have.

You would love to tell some of them that you would like to give them a BMB.

What about the people who have never gotten a BMB.  We have some who were diagnosed strictly through a PCR test, and are still doing good.  It makes you wonder,but you celebrate and do your own thing.  Congratulations!!!!!!






1 user(s) are reading this topic

0 members, 1 guests, 0 anonymous users