Jump to content


Photo

Happy cancerversary to me


  • Please log in to reply
11 replies to this topic

#1 Jamar

Jamar

    New Member

  • Members
  • Pip
  • 2 posts

Posted 30 August 2011 - 12:37 PM

2 years ago yesterday I was diagnosed with CML.

I had extra beer last night so my liver could celebrate too, and I am feeling it today


When I was diagnosed I was definitely scared, I didnt fully understand what my disease had in store for me.

I was afraid of what kind of side effects were around the corner with gleevec.

In my 2 years as a CMLer I have; achieved PCRU, seen sprycel and tasinga get approved as treatment for CML(though I am still on Gleevec), read up on new drugs that are showing promise in trials like Ariad.

I moved across the country to Chicago (for those of you who hate cold weather, the move is a good thing, honest) and my wife and I had our first baby at the end of July.

I read this board almost daily it has been the greatest resource for me since I started and continue on my CML journey



#2 Tedsey

Tedsey

    Advanced Member

  • Members
  • PipPipPip
  • 85 posts

Posted 30 August 2011 - 12:39 PM

Long life to you!  Congrats!!!!  I live for these happy stories!  I have a deathgrip on hope.

Tedsey



#3 Tedsey

Tedsey

    Advanced Member

  • Members
  • PipPipPip
  • 85 posts

Posted 30 August 2011 - 12:42 PM

Oh!  Congrats on the birth of your first child.  Isn't being a parent the most wonderful thing?!  Chicago ain't so bad.  I LOVE living here!



#4 CallMeLucky

CallMeLucky

    Advanced Member

  • Members
  • PipPipPip
  • 216 posts
  • LocationCT

Posted 30 August 2011 - 12:59 PM

congratulations.  I particularly like the way you talked about the things that have been accomplished in years since Dx.  Life is different, but it can still be good for us.......

Here's to many more cancerversaries.......


Date  -  Lab  -  Scale  -  Drug  -  Dosage MG  - PCR
2010/Jul -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 1.2%
2010/Oct -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.25%
2010/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.367%
2011/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.0081%
2011/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2011/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.00084%
2011/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.004%
2012/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Dec -  MSKCC  -  Non-IS  -  Sprycel  - 100 - 0%
2013/Jan -  Quest  -  IS  -  Sprycel  -  50-60-70  - 0%
2013/Mar -  Quest  -  IS  -  Sprycel  -  60-70  - 0%
2013/Apr -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.036%
2013/May -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.046%
2013/Jun -  Genoptix  -  IS  -  Sprycel  - 50 - 0.0239%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0192%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0034%
2013/Oct -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0054%
2014/Jan -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0093%
2014/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.013%
2014/Apr -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0048%
2014/Jul -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2014/Nov -  Genoptix  -  IS  -  Sprycel  - 100 - 0.047%
2014/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0228%
2016/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Dec - Genoptix  -  IS  -  Sprycel  -  100 - 0%
 

 


#5 LoriM58

LoriM58

    New Member

  • Members
  • Pip
  • 0 posts

Posted 30 August 2011 - 03:19 PM

you have many blessings to celebrate!!   LOVE the good news - Congrats!

Lori



#6 Jamar

Jamar

    New Member

  • Members
  • Pip
  • 2 posts

Posted 30 August 2011 - 03:40 PM

Yeah, I'm definitely accepting of the new "normal" and I know anything can change on the CML road.

Reading about all the advances in CML treatment has always given me hope since I started this journey



#7 Jamar

Jamar

    New Member

  • Members
  • Pip
  • 2 posts

Posted 30 August 2011 - 03:46 PM

Tedsey, I have been in Chicago since Oct 2010

I can definitely say that I understand why Chicagoans love this place



#8 Susan61

Susan61

    Advanced Member

  • Members
  • PipPipPip
  • 43 posts
  • LocationNew Jersey

Posted 30 August 2011 - 07:15 PM

What great news.  You have certainly been blessed with your response to the Gleevec, and then your little baby coming into the family.

May you have many many more years ahead of you too.  I love the cold weather, and been enjoying the low humidity since we got hit with the Hurricane on Sunday here in NJ. we have had some real nice weather.



#9 hannibellemo

hannibellemo

    Advanced Member

  • Members
  • PipPipPip
  • 728 posts
  • LocationNorth Central Iowa

Posted 31 August 2011 - 06:52 PM

Congratulations, Jamar. Even with CML it sounds as though you have still received many blessings in your life!

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 ChrisC

ChrisC

    Advanced Member

  • Members
  • PipPipPip
  • 39 posts

Posted 31 August 2011 - 08:06 PM

Wishing you many happy and healthy returns of the day, Jamar, and someday, complete freedom from CML!

ChrisC


Be alert, but not overly concerned.

 

• Dx Oct. 22, 2008, WBC 459k, in ICU for 2 days + in hospital 1 week

• Leukapheresis for 1 week, to reduce WBC (wasn't given Hydroxyurea)

• Oct. 28, 2008: CML confirmed, start Gleevec 400mg

• Oct. 31, 2008: sent home when WBC reached 121k

• On/off, reduced dose Gleevec for 7 months

• April 2009: Started Sprycel 100mg

• Sept. 2009: PCRU 0.000

• Sept. 2011: after 2 years steady PCRU & taking Sprycel 100mg before bed, quit Sprycel (with permission)

• Currently: still steady PCRU, testing every 6 months 🤗

— Fatigue, hearing loss continue, alas, but I prefer to think it is all getting better!

 

 


#11 Guest_billronm_*

Guest_billronm_*
  • Guests

Posted 01 September 2011 - 01:45 AM

Dear Jamar,

Congratulations on your beautiful new baby, and having your cml under control.In our world it's wonderful to hear news like that. Especially for the newly dx. I'm on 4 years cml.

                                              Congratulations to your wife also    Billie



#12 nathaliece

nathaliece

    New Member

  • Members
  • Pip
  • 0 posts

Posted 01 September 2011 - 05:41 AM

Congratulations, Jamar!  Thanks for sharing the news of your success.  It really gives me hope.  Enjoy that little one.  They grow up too fast!

Best,
Nat






1 user(s) are reading this topic

0 members, 1 guests, 0 anonymous users