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MMR

Started by cedespres , Sep 16 2015 03:56 PM

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8 replies to this topic

#1 cedespres

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LocationCoventry Rhode Island

Posted 16 September 2015 - 03:56 PM

Hi,

Just got back from onc and finally hit MMR . I have not posted in a while and have had lots of things happen health wise over the year from dx. Had to stop Gleevec due to sevear retinal bleeding at 6 months that required 8 PRP surgeries, but not before becoming legally blind. ( 1 of only 2 people this happened to, according my onc). Started Sprycel to replace Gleevec but ended up in the hospital 3 times in 5 weeks due to plural effusion from 100 mg sprycell. Have been on 50mg one day and 70mg the next for about 2 months and have finally hit MMR. Just thought I would share the good news with all of you. I read this forum all the time but have not had much to share until now.

CE Despres

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#2 kat73

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884 posts

LocationWashington, DC area

Posted 16 September 2015 - 04:26 PM

Wow! What a tough time you've had! How you have coped with losing your eyesight is monumental. Way to hang in there and persevere until the magic MMR arrived. Frame it and put it up on the wall! Hope you can keep going on your regimen successfully and avoid any more pleural effusions. If this helps you, I was able to get to PCRU on 70 mg Sprycel, and there are others on here who take even less.

Dx July 2009 on routine physical. WBC 94. Started Gleevec 400 mg Sept 2009. MMR at 2yrs. Side effects (malaise, depression/anxiety, fatigue, nausea, periorbital edema) never improved. Kidney issues developed because of Gleevec. Switched to Sprycel 70 mg in Aug 2011. Above side effects disappeared or improved. Have been MR3.5 - 4.5 ever since. Two untreated pleural effusions followed by one treated by stopping Sprycel Jan 2017. After 9 weeks, PCR showed loss of MMR; re-started Sprycel at 50 mg and in 3 months was back to <0.01% IS. Pleural effusion returned within a couple of months, same as before (moderate, left side only). Stopped Sprycel 50 mg for 12 weeks; pleural effusion resolved. At about a monthoff the drug, PCR was 0.03; at 11 weeks it was 2.06 - lost CCyR? Have returned to 50 mg Sprycel for 3 weeks, intending to reduce to 20 mg going forward.

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#3 gerry

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Posted 16 September 2015 - 07:19 PM

Congratulations on the MMR.

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#4 Billie Murawski

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LocationErie,Pa

Posted 17 September 2015 - 12:02 AM

I'm so sorry you had such a rough start hopefully it will be smooth sailing from now on, congrats on mmr. Billie

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#5 TeddyB

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203 posts

Posted 17 September 2015 - 11:36 AM

Congrats on your MMR

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#6 acl

Advanced Member

Members
142 posts

Posted 17 September 2015 - 03:59 PM

Hi,

Just got back from onc and finally hit MMR . I have not posted in a while and have had lots of things happen health wise over the year from dx. Had to stop Gleevec due to sevear retinal bleeding at 6 months that required 8 PRP surgeries, but not before becoming legally blind. ( 1 of only 2 people this happened to, according my onc). Started Sprycel to replace Gleevec but ended up in the hospital 3 times in 5 weeks due to plural effusion from 100 mg sprycell. Have been on 50mg one day and 70mg the next for about 2 months and have finally hit MMR. Just thought I would share the good news with all of you. I read this forum all the time but have not had much to share until now.

CE Despres

Hi cedespres, Congratulations on your MMR. Please keep us updated.

acl

Diagnosed March 2014

Imatinib 400 mg. Summer 2014, Imatinib 300 mg.

% BCR-ABL

IS-NCN

06/01/16 0.18%

24/02/16 0.11%

23/03/16 0.13%

12/05/16 0.07%

13/07/16 0.17%

12/09/16 0.12%

21/19/16 0.15%

23/11/16 0.09%

20/12/16 0.11%

19/01/17 0.07%

21/02/17 0.07%

20/03/17 0.06%

20/04/17 0.06%

20/05/17 0.07%

20/06/17 0.06%

23/08/17 0.08%

22/12/17 0.04%

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#7 simone4

Advanced Member

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64 posts

Posted 17 September 2015 - 04:12 PM

Cedespres, that is great news. It has been such a tough journey for you, both

with Gleevec and with Sprycel. You are a very strong person to fight through

all that and not give up.

Congratulations.

Simone

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#8 hannibellemo

Advanced Member

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728 posts

LocationNorth Central Iowa

Posted 17 September 2015 - 05:42 PM

Cedespres,

So glad to read the wonderful news of MMR. I'm impressed that you went through all of that and didn't feel the need to let us know, I try never to suffer alone!! Keep us posted when you get the opportunity.

Congratulations, again!

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>

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#9 cedespres

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26 posts

LocationCoventry Rhode Island

Posted 17 September 2015 - 09:39 PM

Hi everyone,

Thank you for your kind responses. It took me some time to get the tech equipment (from a wonderful group called INSIGHT for the blind). I am now able to do some reading and use the computer with a very large font. This forum is incredible and I am so thankful that I found it shortly after my dx in July of 14. I was looking for info on cml and found a blog by Trey that led me here. I will be posting more often now and hope I can be helpful to others as you have been to me. ps I am in Rhode Island and would love to hear from other folks in this area.

Ed Despres