Jump to content


New to board, 1 year after dx, disappointed

  • Please log in to reply
4 replies to this topic

#1 Synapse


    New Member

  • Members
  • Pip
  • 9 posts

Posted 21 February 2015 - 07:48 PM

Hey guys, I have been following this board since diagnosis but decided I'd finally join the discussion. It's nice to know there's so many other people out there dealing with the same issues and the same concerns. Thank you to everyone that has shared their stories; it has given me a better idea of what to expect throughout this process.

My story seems to keep unfolding year after year. I was initially diagnosed with papillary thyroid cancer at age 29 (I'm 36 now). Had total thyroidectomy and large dose (>150 mCi) of I131 initially. It took a total of five surgeries (one resulting in permanent unilateral vocal cord paralysis), three I-131 treatments, a tracheostomy, multiple imaging tests and lab draws, and a week in the ICU after an unexpected surgical complication to finally get on top of it. Currently, that is doing well (endocrinologist feels I'm cured of thyroid cancer with undetectable thyroglobulin), but the three big doses of I-131 took a toll on my bone marrow.

In January 2014, the vision in my left eye became blurry and I was diagnosed with central retinal vein occlusion of both eyes, which is strange for a guy my age. CBC showed I had a WBC of 220,000 (which was likely the cause of the CRVO due to capillary sludging) and I got a frantic call from my primary care doc. I feel the CML was likely due to the radiation treatments, but there's no real way to prove it.

We got control of my CML over the course of the past year, with percentages dropping from 90% at diagnosis to the most recent bone marrow biopsy result of 0.328%. I have been on Sprycel 100mg for the past year. I am a bit disappointed with the results. I was certainly hoping to be in remission. My oncologist thought I was in remission based on my FISH and PCR results. I am still waiting on the mutation analysis to see how we will change therapy. Usually I can put the CML out of my mind but it is challenging waiting on the results. They should be back next week. I try to make light of it with my friends and family - I tell them I hope my "mutation" is that they will tell me I'm Wolverine and my claws will be growing any day now.

Thank you guys for being supportive and I wish you the best with your respective struggles with the same diagnosis.

#2 mlk210


    Advanced Member

  • Members
  • PipPipPip
  • 158 posts
  • LocationIllinois

Posted 21 February 2015 - 10:40 PM

Hi, Synapse. You're further along the process than myself. I've only had been under treatment for 6 months. I too had papillary carcinoma on my thyroid, but it was found on a ct scan from the ER after I started Sprycel when I went in for shortness of breath. It was a good and bad thing at the time. Good because it was caught early, but bad because I didn't even have a handle on the CML and taking Sprycel before I was put into surgery for my thyroidectomy. At 38 diagnosed with two cancers within two months was hard to handle.  I agree with you on the I-131 causing your CML. There are way too many people I've come across that have CML that had I-131 treatments at some point before their diagnosis. 


From what I've seen by hanging out here, some of us are slow responders. I'll let the more knowledgable folks around here talk about the mutation test and your results. I just wanted to say I understand about you making light of your situation with your family and friends. I do the same. You've had a long road with your thyroid cancer and YAY for being undetectable! :) Definitely make sure you are celebrating that!

7/2014 Diagnosed,8/14 Started 100mg Sprycel, 9/14 Thyroidectomy (thyroid cancer)

8/2015 Undetectable, 12/15 Plural Effusion (3 wk drug break)

1/2016 Started 70mg Sprycel, 3/16 Plural Effusion (4 wk drug break)

3/16 .014 after a wk w/o meds

4/16 Started 400mg Gleevec

4/16 Undetectable, 7/16 Undetectable, 10/16 Undetectable, 2/17 Undetectable, 5/17 Undetectable, 8/17 Undetectable


#3 pammartin


    Advanced Member

  • Members
  • PipPipPip
  • 631 posts
  • LocationPennsylvania

Posted 21 February 2015 - 11:20 PM

Welcome. You have been through the paces, haven't you. I know little of tests and results but there will be many knowledgeable people answering your questions and offering suggestions shortly. This is a good place with great people. It would be fantastic if we stopped having newbies but unfortunately people are constantly being diagnosed. I am glad you found us, we care.

#4 Trey


    Advanced Member

  • PS Beta Group
  • PipPipPip
  • 1,705 posts
  • LocationSan Antonio, Texas

Posted 21 February 2015 - 11:22 PM

Hate that capillary sludging.  Probably after-effects of that Alkali Lake thingy, and that girl wasn't very nice.  Anyway, how you got to CML is past history, but your current status is OK.  A 2 log reduction (CCyR) in under a year is good.  I doubt the mutation analysis will yield anything.  Some people are just average responders.  In fact, most people are average by definition.  15 years ago it would have been miraculous.  Today you are average.  Expectations creep. 

#5 hannibellemo


    Advanced Member

  • Members
  • PipPipPip
  • 728 posts
  • LocationNorth Central Iowa

Posted 23 February 2015 - 10:18 AM

Welcome! The desire to be PCRU immediately has muddied the waters! The benchmark is CCyR by 12 months and you are there! Congratulations! In fact you are almost MMR and that is 6 months ahead of benchmarks.


Doesn't it sound better when you look at it that way?




Good luck!



"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>

1 user(s) are reading this topic

0 members, 1 guests, 0 anonymous users