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Too early to get back to the gym?


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#1 snowbear

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Posted 08 January 2015 - 04:13 PM

I have been wanting to get back into a gym routine for some time now.  I'm still not feeling great, but wonder if it might help with the fatigue.  I started Gleevec about 10 days ago and my WBC & LDH have decreased by more than half.  My breathing seems to be getting better some days but I still struggle sometimes.  I still have a long ways to go before PCRu, but even my doctor was impressed with the results so far.

 

Because of lower back problems (DDD & inflammation of discs), I am not able to do any vigorous cardio.  I learned this the hard way when I started a Couch-to-5K program last year.  I even have to be careful as to how fast I walk because it really doesn't take much to cause a flare up.  So I'm limited to walking 2.0-2.5 mph (which is half of what I used to do), using the ARC trainer as I can tolerate it (I had built up to 20 minutes last year before I got sick), some weights and yoga (have to be careful with those because of inflammatory arthritis and tendon-synovitis in my hands and wrists).  My gym does not have a pool and I'm not looking to change (and pay more $$$) at this time.  Maybe when I'm sure that I can maintain a consistent routine week to week, month to month. 

 

I know exercise releases stress hormones and can increase inflammation, but would it be safe for me to start some mild, low-impact exercise just so I can keep moving?   Or should I wait until my CML is under better control (and the RA as well) and focus on resting when I'm not at work ?



#2 ChrisC

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Posted 08 January 2015 - 04:38 PM

Walking . . . at your own pace . . . free. . . so beneficial ☺️

Be alert, but not overly concerned.

 

• Dx Oct. 22, 2008, WBC 459k, in ICU for 2 days + in hospital 1 week

• Leukapheresis for 1 week, to reduce WBC (wasn't given Hydroxyurea)

• Oct. 28, 2008: CML confirmed, start Gleevec 400mg

• Oct. 31, 2008: sent home when WBC reached 121k

• On/off, reduced dose Gleevec for 7 months

• April 2009: Started Sprycel 100mg

• Sept. 2009: PCRU 0.000

• Sept. 2011: after 2 years steady PCRU & taking Sprycel 100mg before bed, quit Sprycel (with permission)

• Currently: still steady PCRU, testing every 6 months 🤗

— Fatigue, hearing loss continue, alas, but I prefer to think it is all getting better!

 

 


#3 gerry

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Posted 08 January 2015 - 05:59 PM

Exercise will help with the fatigue, so do what you can. One of the things I found was I felt like I lost a bit of strength on the 400mg, improved when I went down to 300mg.



#4 Jerry.s

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Posted 08 January 2015 - 06:11 PM

I started with walks mostly outside around the block . I find them to be great stress relievers my family joins me most of the time. I am jogging now that I feel a little better

#5 Pin

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Posted 08 January 2015 - 06:48 PM

I think gentle walking should be fine - when I was first diagnosed they asked me to take a week off soccer just to see how the medication was affecting me. I didn't want to, because I'd been playing the whole time I was undiagnosed (albeit badly!!). So I did, and I found the exercise quite tiring at first. Go easy on yourself :) Exercise still helps me with fatigue.


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


#6 Marnie

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Posted 08 January 2015 - 06:59 PM

When I was diagnosed, I had already signed up and paid for a flat track dirt bike camp.  My doc said that as long as my white blood counts were under control I could participate.  I did. 



#7 jjg

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Posted 08 January 2015 - 07:10 PM

It sounds as if you have a few physical issues that are making exercise harder. Fatigue from treatment stuffs up my posture and makes my back/neck issues so much worse. 

Have you tried Pilates, or some other physio supervised strengthening program. Something to get you strong enough to be able to exercise safely. Yoga is more stretching and can often push damaged/weak bodies too far.


Dx Dec 2010 @37

2x IVF egg collection

Glivec 600 & 800mg

PCRU March 2012

Unsuccessful pregnancy attempt - relapsed, 3 months interferon (intron A), bad side effects from interferon

Nilotinib 600mg Oct 2012

PCRU April 2013, 2 years MR4.5 mostly PCRU with a few blips

April 2015 stopped again for pregnancy attempt (donor egg), pregnant first transfer, 0.110 at 10wks, 2.1 at 14wks, 4.2 at 16wks, started interferon, slow dose increase to 25MIU per wk, at full dose PCR< 1 for remainder of pregnancy

Healthy baby girl Jan 2016, breastfed one month

Nilotinib 600mg Feb 2016

MMR May 2016

PCRU Feb 2017


#8 rcase13

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Posted 08 January 2015 - 07:24 PM

I was told I could do what I wanted as long as my spleen didn't hurt too bad. My spleen was huge. Still hurts some after three months.

10/01/2014 100% Diagnosis (WBC 278k, Blasts 6%, Spleen extended 20cm)

01/02/2015 0.06% Tasigna 600mg
04/08/2015 0.01% Tasigna 600mg
07/01/2015 0.01% Tasigna 600mg
10/05/2015 0.02% Tasigna 600mg
01/04/2016 0.01% Tasigna 600mg
04/04/2016 PCRU Tasigna 600mg
07/18/2016 PCRU Tasigna 600mg
10/12/2016 PCRU Tasigna 600mg
01/09/2017 PCRU Tasigna 600mg
04/12/2017 PCRU Tasigna 600mg
10/16/2017 PCRU Tasigna 600mg
01/15/2018 PCRU Tasigna 600mg

 

Cancer Sucks!


#9 snowbear

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Posted 09 January 2015 - 11:14 AM

I don't think I'll be trying it yet.  For some odd reason last night, I developed severe pain where my bone marrow biopsy was done.....OVER A MONTH AGO!  It hurt worse than the actual procedure which was easy for me.  I took some Aleve and it helped but I can feel that it's "there", so I don't want to push myself.

 

But even worse than that, I am much too sick and weak to do much of anything.  Today was the first day I called off work since starting the Gleevec.  I feel like I've been hit by a truck and left for dead. 

 

This is horrible. Please tell me it gets better!



#10 Marnie

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Posted 09 January 2015 - 02:28 PM

It does get better.  Hang in there!

 

Marnie



#11 Damerault

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Posted 10 January 2015 - 10:38 PM

It gets better. I promise.

11/29/2013 Diagnosis PLT 538 K/uL HGB 6.2 G/DL, HCT 18.5% WBC 557.00 K/uL Enlarged Spleen
Sprycel 100 MG
Hydroxyurea initially 4 capsules daily
By 4/2014 PLT 27, WBC and RBC Low. Off Sprycel for 3 weeks
After 3 weeks, blood counts normal, no mutation, back on Sprycel 50 MG
5/2014 PLT too Low off Sprycel 4 weeks
6/2014 started Tasigna
Side Effects- Nauseous, Headaches, Tired
8/2014 second opinion Mass General CML Specialist
Continuous transfusions of RBC, PLTs and NEualasta to temp increase blood cells to fight off infection.

Remain on full dose Tasigna

Major p210 International Scale

05/11/2015 0.0950
09/08/2015 0.0782
01/19/2016 0.0310
04/28/2016 0.0161
07/25/2016 0.0244
11/04/2016 0.0140
02/06/2017 0.0129
05/23/2017 0.0087
Today 0.0000



Be well, Diane.


#12 Billie Murawski

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Posted 10 January 2015 - 11:24 PM

Hi Snowbear,

 Sorry you're having such a hard time trust me we all know what you are going through, many of us have other health problems besides cml and it is so frustrating, you wonder how you can cope with it all.but somehow we do. It does get better. As far as going to the gym it's great, I go to the gym all the time (I just don't go inside).                    Billie



#13 SUE

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Posted 11 January 2015 - 09:09 PM

Snowbear, it does get better.  The shock lessens, and so do the fear and exhaustion.  The advice from the people on this board is wonderful.  And so is the laughter.  (Thanks, Billie)

 

Sue 


Dx  April 2013, FISH 62,  BMB not enough for PCR test; put on Gleevec 400;

 August 2013, FISH 8.7;

Oct 2013, FISH 5.6

Stopped Gleevec Nov 2013 for 6 weeks due to terrible side effects; Jan 2014 started Sprycel 50mg;

Feb, 2014 PCR  6.8

May,2014  PCR   .149

Aug, 2014 PCR    .015

Nov. 2014 PCRU

March, 2016  went down to 40mg Sprycel

Oct. 2016   stopped Sprycel for a couple weeks due to concern about shortness of breath.  Echo showed mild PAH.

Nov 1 2016  resumed Sprycel 20 mg daily 

Dec 2016  PCRU

March 2017  PCR 0.020

May 2017     PCRU

Sept  2017   PCRU

Dec    2017  PCRU

 





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