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#1 Floa7

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Posted 19 August 2013 - 05:10 PM

I can't reply but can start new discussions. My son has CML, diabetic, only 42. His blood vessels were breaking  or hemorrhaging in his eye, collapsed retina and now is blind in right eye. He got a drop of Avastin shot in his other eye to stop the bleeding or to prevent more vessels growing. He was switched from 1 year of Gleevec to Sprycel in March. when this happened. Trey what happened to him?


1 2012 CML detected Started Gleevec 400 mg

In nov 2014 my pcr started to rise by Feb I stopped Gleevec and went onto

2 2015 Tasigna 600 mg/day

I have been PCRU for 2 years and stopped Tasigna 4 7 2017

5 8 2017 results 0.008

5 30 2017 results 0.028 

6 30 2017 results 0.3, I have restarted the Tasigna because it went above 0.1 

 

My son

11 2011 CML detected Started Gleevec 400 mg

He went 2 1/2 years on gleevec and lost PCRU

Started Sprycel went PCRU for 2 years and stopped the Sprycel, went back for 3 month checkup and PCR was 8.0

He went back onto Sprycel and now is PCRU again

3 16 2017 results 0.008

6 1 2017 results 0.002


#2 Trey

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Posted 19 August 2013 - 07:40 PM

Diabetes combined with CML can be a difficult road.  A diabetic already has difficulty with peripheral blood flow, and flow into small blood vessels.  The combination of the diabetes and TKI drugs probably combined to harm his retina and the diabetes impedes repair.  Time will tell whether he will recover eyesight as the diabetes will make recovery more difficult.  I don't know if Sprycel will reduce the vessel damage, but it was a good idea to switch from Gleevec since his eyes were suffering from that combination.  Is there an option for hyperbaric therapy (infusing oxygen) for the eye to promote healing -- ask your doctor about that. 



#3 Floa7

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Posted 21 November 2013 - 09:09 PM

Wow I can finally reply on this sight, Good Lord Is still watching out for me. My son has had surgery on both eyes for retinal detachment. Also has oil bubbles in both eyes, which will be replaced with saline after 6 months or so. He is legally blind now. He used a 700 magnifying glass to see with since July. He got eye glasses last week and can SEE, mostly distant. He was tired of holding that magnifying glass. He can see the tv, but not the fine print to get ballgame scores. He just has a great mom....lol He had 20 20 vision April  2012. We believe this is from the Gleevec and Diabetic. He is on Sprycel now and last blood work had him at .5 % Which is great. I am still on Gleevec, my last blood work was at .3% I really enjoy reading comments from this site, it has helped a lot from the side effects.


1 2012 CML detected Started Gleevec 400 mg

In nov 2014 my pcr started to rise by Feb I stopped Gleevec and went onto

2 2015 Tasigna 600 mg/day

I have been PCRU for 2 years and stopped Tasigna 4 7 2017

5 8 2017 results 0.008

5 30 2017 results 0.028 

6 30 2017 results 0.3, I have restarted the Tasigna because it went above 0.1 

 

My son

11 2011 CML detected Started Gleevec 400 mg

He went 2 1/2 years on gleevec and lost PCRU

Started Sprycel went PCRU for 2 years and stopped the Sprycel, went back for 3 month checkup and PCR was 8.0

He went back onto Sprycel and now is PCRU again

3 16 2017 results 0.008

6 1 2017 results 0.002


#4 Pin

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Posted 26 November 2013 - 11:55 PM

Hi Floa, I'm sorry to hear about your son's eye surgery - it sounds like he has had a rough time of it lately. I am glad to hear that you both are having good responses to the medications. All the best, Pin


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





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