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Is it the meds or that Im lazy that...


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#21 Marnie

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Posted 23 September 2016 - 12:27 PM

I forgot about the broken leg. . . give yourself a break.  No wonder you feel like you are a slug.  You're entitled to be one until you are healed up.  Unfortunately, it will take awhile until you get somewhere close to 100% again. 

 

For now, it sounds like Netflix is about the best exercise you'll get.



#22 beno

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Posted 23 September 2016 - 02:28 PM

Hey, JPD. . .

 

What dosage are you on?  Any chance that you can reduce?  For me, the difference between 50 mg Sprycel and 25 (I'm now cutting my pills in half with doc's blessing) is interesting.  50 mg gives me lumpy head (annoying rash), elbow joint pain, fatigue.  25 mg = no lumpy head, no joint pain. 

 

I'm always tired, darn it.  I push through the fatigue because I can't stand not being active (new sport. . .stand-up paddle boards on the river, what a hoot. . .hopefully not as dangerous as trials motorcycles). 

 

Don't call yourself lazy, the TKIs definitely have an impact on fatigue.  But try to get out there and do something.  Try a paddle board.  It's always entertaining when someone falls in. . . especially my husband. 

 

Marnie

Just curious, but I've had the lumpy head stuff since I started on Sprycel, but this week some of the lumps on my scalp started breaking open and bleeding.  Has anyone else had that?


DX 3/30/2016 WBC 484.2 FISH 95.3

took Hydrea 3/30-4/11

taking Sprycel 100 mg since 4/5

10 day break from Sprycel for platelet count of 12 4/26-5/8

7/07/2016 1.47% (IS)

9/30/16 BMB PCR .1259 switched to new onc

12/30/16 PCR .1569

4/7/17 PCR .0904 MMR

7/14/17 PCR .0520

12/1/17 PCR .0148


#23 Marnie

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Posted 23 September 2016 - 07:47 PM

Hi, beno. . .

 

Are you still on 100 mg Sprycel?  I was amazed at how quickly my lumpy head cleared up when I went down to 50 mg. 

 

Actually, just looked at your footer info.  Looks like it's too early for you to reduce dose, but keep it in mind for the future.  You are pretty new to the cml club.  I'm guessing that as your body adapts, the side effects will lessen.  And, dose reduction does wonders.

 

Good luck,

Marnie



#24 PhilB

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Posted 26 September 2016 - 08:58 AM

Okay, a broken leg is definitely a good excuse, but it's amazing what you can still do if you get the proper old-fashioned crutches that go all the way to the armpit.  When I broke my tib and fib I managed to master carrying three full pints of beer from the bar to the table despite having a non-weight-bearing cast. :D



#25 jmoorhou

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Posted 28 September 2016 - 07:30 PM

If I lived near JPD I would come over and throw him on a rowing machine. I love rowing machines. I have been exercising and don't have the fatigue anymore. I only have it getting from a sitting position which is because of low hemocrit, that what controls oxygen to the peripheral limbs.

I hope you get the readings under control I would imagine that would be adding to your depression. Did you ever try Gleevec? It doesn't cause nausea if you take it an hour after eating. There are other side effects but I've gotten used to them.
Diagnosed 3/2014 WBC 28 Non detectable within 3 monthsGleevec 400 mg 5/2014 one hour after dinner really improves nausea300 mg 12/15/2016200 mg and 300 mg Gleevec 2/25/2017 (after 3 years on Gleevec) For last four months taking 300 mg per day. Last CMC showed liver enzymes elevated, went to a good Naturopath and he recommended 4 Tumeric, 10,000 mg Vitamen D, and 3 milk thistle (silymarin) daily. Also use One<p>Day Detox Dandeloin tea, and Nettle Tea and a slice of ginger every day...in two months liver tests were below normal.Janis

#26 beno

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Posted 29 September 2016 - 10:39 AM

Hi, beno. . .

 

Are you still on 100 mg Sprycel?  I was amazed at how quickly my lumpy head cleared up when I went down to 50 mg. 

 

Actually, just looked at your footer info.  Looks like it's too early for you to reduce dose, but keep it in mind for the future.  You are pretty new to the cml club.  I'm guessing that as your body adapts, the side effects will lessen.  And, dose reduction does wonders.

 

Good luck,

Marnie

I go in for my 6 month bone marrow biopsy tomorrow, so I suppose I am new to the club.  It feels like I've been living with CML much longer than that.  I guess it just kind of took over my world at first.  I was going in for blood draws every day and researching all the time to try to understand what I was up against. 


DX 3/30/2016 WBC 484.2 FISH 95.3

took Hydrea 3/30-4/11

taking Sprycel 100 mg since 4/5

10 day break from Sprycel for platelet count of 12 4/26-5/8

7/07/2016 1.47% (IS)

9/30/16 BMB PCR .1259 switched to new onc

12/30/16 PCR .1569

4/7/17 PCR .0904 MMR

7/14/17 PCR .0520

12/1/17 PCR .0148


#27 Marnie

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Posted 29 September 2016 - 07:48 PM

Believe it or not, you WILL get to the point where cml isn't in the forefront of your mind every day.  It takes awhile, but you'll get there.  We all went through the same thing at diagnosis.  Takes awhile for it to become real, and then it takes awhile for it to become your new normal, and then it takes awhile for it to become humdrum.  It actually does. . . well, not for everyone, but for the "typica" cml-er (whatever that is). 

 

Good luck.

Marnie



#28 Billie Murawski

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Posted 30 September 2016 - 04:45 AM

Hi JPD,

 I'M old and I'm lazy but after 9 years I'm still here. That's my story and I'm sticking to it.     Sincerely Billie






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