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#1 snowbear

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Posted 02 December 2015 - 12:34 PM

Hi all. It's been a year now since I was diagnosed with CML & started on Gleevec.  It took some time, but eventually my symptoms subsided and I started feeling well and "alive" again.  But a few nights ago, things went downhill quite suddenly.  Swollen, tender glands, slightly feverish, achy all over, exhausted. I stayed home yesterday and slept all day and had no problem sleeping all last night.  I came back to work today, but I still feel like a zombie.  I will probably go straight to bed when I get home.

 

My last PCR and bone marrow biopsy were done over the summer. Got down to 0 Fish & 8% PCR.  My white blood counts have been normal for many months now.  I will have another PCR in a few weeks and I'm thinking doc might schedule another BMB (hopefully my last) after my next appointment.

 

I've been really busy lately with the holidays and traveling last weekend, but I can't help but worry that the Gleevec has stopped working and I'm getting sick again.



#2 PhilB

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Posted 02 December 2015 - 01:40 PM

Hi Snowbear,

  1. You have responded well enough to reach zero FISH and so the odds are massively in your favour that the CML will always be well controlled by the drugs. 
  2. CML is also a very slow moving disease, with few if any symptoms in the early stages so, in the very unlikely event that the G had stopped working, it would be another whole dose of unlikeliness on top of that for you to have noticeable symptoms from the CML already.
  3. On the other hand, Gleevec leads in very many people to a slightly suppressed immune system and a general fatigue level together make those taking it more likely to suffer from severe cold / flu symptoms if and when they catch a bug. 
  4. It's winter. 

Do the maths, then forget the CML, pour yourself a whisky mac and snuggle down under the duvet.

Hope you're feeling better soon.



#3 kat73

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Posted 02 December 2015 - 03:19 PM

Snowbear - Listen to PhilB.  I just was sicker than I've ever been in my whole life, for 19 days, with an ear infection.  I'm still not quite right.  I was astounded at how hard I was hit - never before have I been brought so low by an ordinary infection of the kind that we all get at some point.  It compounded my rotten feelings greatly to have my monkey mind going all over the "compromised immunity" land and down the rabbit hole of, "it's the CML."  You're just sick.  That's all.  (It's enough!)  Take care of yourself as you would someone else and by all means go to your regular doctor for help.  But put the CML out of your mind.  Give the monkey some bananas.


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.


#4 snowbear

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Posted 10 December 2015 - 11:41 AM

Thanks, I think you're right. Seems my allergies have gone into overdrive. I have swollen glands pretty much every day, but the other symptoms seem to change around - sore throat, irritated eye, runny nose, head fog, dizziness.  Lots of fun, lol.

 

I go for blood work tonight and see doc next week.  Hope to get some really good BCR results soon!! :)



#5 Dona_B

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Posted 10 December 2015 - 11:51 AM

I don't know about Gleevec, but with Sprycel there are a very limited number of over-the-counter medicines that can be safely taken together. If you take anything, prescription or not,  call your Gleevec Pharmacist to check for interactions.


DX 1/14; Sprycel 100 Mg, liver toxicity; Sprycel 80 Mg; down to 50 Mg for 5 months. Numbers going up. Back to 80 Mg 10/16 (with 50s slipped in to use up) BCR/ABL: .0047 12/15; .0302 4/16;  .0528 8/16;  .084 10/16; .045, 1/17 back up on 80 mg Sprycel; .006, 3/17; .016, 7/17; Shingles 8/17





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