Re: RE: Sports and CNL

[Guest guest]

Hi Ivan,

I was dxed in March 2005, age 38, in pretty bad shape, wbc 250k, big

spleen, couldn't walk 50m without seeing butterflies. I started

gleevec at 400mg/day, and resumed some exercising a couple of weeks

after, starting with just walking a bit, short hikes in the hills. I

resumed scuba (my main obsession for 25+ years) when I got in complete

blood remission a couple of months later. Drs cleared me for deep

trimix dives, I dove to ~100m four months after dx without problems (I

am not recommending that without training and experience !). About 18

months ago I restarted climbing with no problems, climbing 5.11s now.

I dunno why you couldn't play soccer once you are in remission if you

don't have other health issues than cml. Take it easy until you are in

blood remission (normal blood counts) and take it progressively after

to avoid injury. I have seen a cardiologist a year ago as recommended

for deep divers around 40, and everything checked out fine. I have no

plans on slowing down in the near future.

Marcos.

On Mon, Mar 9, 2009 at 3:09 PM, ivanduran2008 <iduran@...> wrote:

> Hi everybody,

> i have been dx CML this past january; I have finally started GLEEVEC;

> granted that I live in Bolivia and the price is no different.

> I have had few side effects, but I feel very tired and feel that if I move

> too fast I will pull a muscle.

> I was just wondering if after I get used to the GLEEVEC I can excersice

> I would love to return to my running and tennis: Doctors told me to forget

> about soocer.

> Anyone of you active in any sports activities?

> Ths

>

> Ivan

>

>

--

Marcos Perreau Guimaraes

Suppes Brain Lab

Ventura Hall - CSLI

Stanford University

220 Panama street

Stanford CA 94305-4101

650 614 2305

650 468 9926 (cell)

marcospg@...

montereyunderwater@...

www.stanford.edu/~marcospg/

[Guest guest]

I play basketball two mornings a week for about 1 hour.  I have done that for 5

years since I was diagnosed.  No issues - but if you are going to do any labs -

take some time off as it ddid lead to excesive readings of muscle exhaust

regarding kidney function.

From: ivanduran2008 <iduran@...>

Subject: [ ] RE: Sports and CNL

Date: Monday, March 9, 2009, 6:09 PM

Hi everybody,

i have been dx CML this past january; I have finally started GLEEVEC; granted

that I live in Bolivia and the price is no different.

I have had few side effects, but I feel very tired and feel that if I move too

fast I will pull a muscle.

I was just wondering if after I get used to the GLEEVEC I can excersice

I would love to return to my running and tennis: Doctors told me to forget about

soocer.

Anyone of you active in any sports activities?

Ths

Ivan

[Guest guest]

Hi Ivan here my sport is table tennis.I was dx 12/24/05 in south Tx.where I

go for the winter and play table tennis.When on 800 Gleevec coming down from

154000  wc my play was bad no coordination eye sight wet and blurry.Today pcru

600 Gleevec only problem I had this winter was a severe calf cramp. I was in the

cold never had any problem in senior center.I can out last most in my age

group,and beat a few at that. Name of the game take your time,don't push

yourself you will pay . 

[Guest guest]

Everyone is different - some people can hardly get out of bed- some like our

Marcos- dives, climbs etc. I am more active now than I was before my diagnosis

in 2007-I have completed two half marathons( walking/jogging)and I'm training

for a 39 mile two day walk. All to raise funds for cancer research. The first

year I was really sick. I still get muscle cramps etc

But I'm so darn happy to be alive. Next month I will be 57- so I say if you one

of the lucky ones who have the energy- live your life. Rugby should probably be

out of the question but soccer that might still be on the table. There is a

professional hockey player with CML- I haven't heard how he is doing but if he

can still play at that level there is hope for us weekend athletes.

Best wishes to you my friend.

Chi

> From: ivanduran2008 <iduran@...>

> Subject: [ ] RE: Sports and CNL

>

> Date: Monday, March 9, 2009, 3:09 PM

> Hi everybody,

> i have been dx CML this past january; I have finally

> started GLEEVEC; granted that I live in Bolivia and the

> price is no different.

> I have had few side effects, but I feel very tired and feel

> that if I move too fast I will pull a muscle.

> I was just wondering if after I get used to the GLEEVEC I

> can excersice

> I would love to return to my running and tennis: Doctors

> told me to forget about soocer.

> Anyone of you active in any sports activities?

> Ths

>

> Ivan

[Guest guest]

Hi Ivan,

Welcome to the group.

Your doctors are wrong.

Take the example of Blake. is a professional hockey player in

the top league in North America. He was diagnosed with CML in Oct 2007 and

he continues to perform at a top level. He is on Gleevec.

Many CML patients are marathoners.

Zavie

Zavie (age 70)

67 Shoreham Avenue

Ottawa, Canada, K2G 3X3

dxd AUG/99

INF OCT/99 to FEB/00, CHF

No meds FEB/00 to JAN/01

Gleevec since MAR/27/01 (400 mg)

CCR SEP/01. #102 in Zero Club

2.8 log reduction Sep/05

3.0 log reduction Jan/06

2.9 log reduction Feb/07

3.6 log reduction Apr/08

3.6 log reduction Sep/08

e-mail: zmiller@...

Tel: 613-726-1117

Tel: 561-429-3309 in Florida

Fax: 309-296-0807

Cell: 613-282-0204

ID: zaviem

YM: zaviemiller

Skype: Zavie

_____

From: [mailto: ] On Behalf Of

ivanduran2008

Sent: March-09-09 6:09 PM

Subject: [ ] RE: Sports and CNL

Hi everybody,

i have been dx CML this past january; I have finally started GLEEVEC;

granted that I live in Bolivia and the price is no different.

I have had few side effects, but I feel very tired and feel that if I move

too fast I will pull a muscle.

I was just wondering if after I get used to the GLEEVEC I can excersice

I would love to return to my running and tennis: Doctors told me to forget

about soocer.

Anyone of you active in any sports activities?

Ths

Ivan

[Guest guest]

Hey - table tennis is my favourite too and I play winter and spring

pennant in " veterans " once a week. I just love it - I also have a problem

with my eyes, but is more to do with the amount of sitting in front of a

computer at work than blaming Glivec. My eyes really went downhill when I

was sitting in front of an old CRT monitor for 6 years at work and home,

instead of the lovely 20 " one I have now at work and laptop at home. Plus my

parents both wore glasses and I have needed them for driving for 9 years or

more (couldn't see number plates or street signs LOL).

My eyes certainly were crappy when on Glivec - so much periorbital oedema

which has blessedly gone thanks to Tasigna.

With cramp - well I take 6 magnesium tabs a day and never have any problems.

Regards,

From: [mailto: ] On Behalf Of

Shipley

Sent: Tuesday, 10 March 2009 12:36 PM

Subject: Re: [ ] RE: Sports and CNL

Hi Ivan here my sport is table tennis.I was dx 12/24/05 in south

Tx.where I go for the winter and play table tennis.When on 800 Gleevec

coming down from 154000 wc my play was bad no coordination eye sight wet

and blurry.Today pcru 600 Gleevec only problem I had this winter was a

severe calf cramp. I was in the cold never had any problem in senior

center.I can out last most in my age group,and beat a few at that. Name of

the game take your time,don't push yourself you will pay .