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Recently diagnosed. Question about dealing with work

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#1 Brahma


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Posted 16 October 2012 - 07:42 AM

I am 39 with 3 little children and was diagnosed with cml a little over 3 weeks ago.   My white blood count was high 478,000 so I was on Hydrea and allopurinol to get my counts down before my treatment started. When they took my bone marrow biopsy my blood was not clotting properly so it formed a lump the size of a softball in my back which was hitting the nerves in my back so I could barely move the week after I was diagnosed.  Once that started getting better I developed a pretty good rash.  My back pain and  rash are both gone and am done with the hydrea  and allopurinol and have started taking tsigna.  I have been doing pretty well on it even though most days around 3:00 I get pretty exhausted and need to rest for a few hours.

I was just wondering how most people dealt with going back to work and people at work. Do they ease in to it or just go right back to their normal schedule.

My commute to get to work is about an hour and a half each way so my day is usually long.

I have a lot of anxiety about going back to work.

How long do people usually miss work when they are first diagnosed and how do they usually deal with their coworkers. My supervisors, the people who work for me  and a few of my closer friends know but what about the rest of my coworkers.  The high blood count made my spleen grow in to my stomach so I have had a tremendous weight loss.  I lost about 50 pounds since April and since I was last in the office a few weeks I lost about 15 pounds.  I now look pretty skinny and know it will be natural for every person I run across at work to comment on my weight.  When I see any of my neighbors the first thing they ask me about is how I lost all the weight and can I tell them my diet.

My doctor and wife think it will be helpful for me to be more active so I have started taking the baby for a walk everyday and getting out of the house and they think i should go back to work. Anyway, like I said before physically and mentally I am concerned about going back to work and dealing with people and stressful situations at work which come up almost everyday.   It would be helpful to me to know how long people missed work and how they dealt with their coworkers.


#2 Trey


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Posted 16 October 2012 - 08:40 AM

Many of us experienced the initial exhaustion after diagnosis and starting therapy.  For me this lasted about 6 weeks or so.  Then a period of "just plain tired" sets in and lasts for months more.  After that it may get better.  There are some who remain very tired for the longer term.  So there is not one single answer.  We are each different.  But the initial level of exhaustion should get better to some degree.  I fought the fatigue by getting back into exercise as soon as possible, even though tired.  My Onc pushed me to exercise, also.  For me that helped a lot, even though difficult.  It is good to push yourself and get back to your routines as quickly as possible even if at roughly 70% level at first.  I did not tell anyone but close family about the CML.  That was a good decision for me.  I don't like to have people ask me about my health.  How you deal with that at work is an individual issue.  So although some may have noticed that I was not at 100% for a while, after a few months that was no longer an issue.  But for some it takes longer.  No simple answers.  If you need people to realize that you need some time to ramp up to full speed, then telling co-workers may be necessary. 

#3 TeddyB


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Posted 16 October 2012 - 12:03 PM


I have been on Gleevec 6 months now, and i only work 20% at the moment, as i want to get my body adjusted to the medication and to the side effects, and really just focus on me. If all goes well in the coming checkups the plan is to increase work gradually.

I had a lot of fatigue, some nausea, a bad skin rash, edema etc the first 2-3 months, then it got a lot better, but i still have some fatigue, and the days i push myself i might need some time to recover. I also found it weird that in stressfull situations it feels like my mind just stops working, and i cant remember "anything", that is also one of the reasons i take it slow with my work. I think this is whats referred to as "Brain fog" and it seems to be worse on Gleevec than on the other tki`s.

My boss and coworkers are all very understanding, and i havent kept anything from them as i feel that being open about it is the best way to go.

As for exercise, i try to go for a walk each day (30-45 minutes or so, at least 5 days a week). On the days i feel really good i try to jog a bit as well, and on the other days i just try to walk a lot uphill/downhill to get the most out of my walks. The exercise really clears the mind, and helps with fatigue/tiredness. And as with Trey, even though i feel like tired or unmotivated, i get out that door, and start walking, cause it helps me a lot.

Good luck.

#4 hannibellemo


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Posted 16 October 2012 - 02:21 PM

Welcome, Brahma,

Like you I had a large cancer load and had lost noticible weight. I started out on Gleevec and felt absolutely normal, no fatigue at all. Returning to work was not difficult for me. However, I developed liver issues with Gleevec and was switched to Sprycel 100mg. The first 6 weeks I had odd, irritating side effects but nothing that interfered with work or life. On Thanksgiving Day I hit a brick wall and what I now  think was severe fatigue set in. My counts were excellent there was no other reason I could think of for the absolutely horrible way I felt. I wanted to hide under my desk at work because I felt so bad. That, too, passed after 4 months and I went back to feeling relatively normal. I do have days when I can tell I'm fatigued for more than normal reasons but for the most part I just push through it.

Returning to work may be the best thing for you. It might be good to get back to normal activities and see your colleagues again to take your mind off of CML. Good luck!




"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>

#5 ritan/


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Posted 17 October 2012 - 10:37 AM

personally, i've been really honest. i tell anyone who asks exactly what's going on. it's easier than trying to prevaricate. i too lost a load of weight (too bad i've now gained it all back) and felt pretty lousy for several months. personally, i took going back to work slowly, but i was able to because i own my own business. i'm a year+ out from diagnosis and i still spend most afternoons cuddled up on the couch doing not much. i know some people manage fulltime work, and i did for about a month and a half when i lost an employee, but when i got done with my month and a half i was completely wiped.

i've no idea what your financial situation is but if you have any ability to do part time work closer to home, i think i'd consider it.

#6 beverly


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Posted 01 November 2012 - 02:52 PM

I went out to eat with my ignorant GOP Neighbor yesterday. I thought I  was going to have a good time and she was there to cheer me up. No !! Every topic was " When I lost my husband I had to get myself together I had to kids to raise. My husband passed away Sept 17th. 3 days after my CML diagnosis."Do you think you'' be able to go to work part time, "Oh your on disability already would that be a problem? " Well I had 1 piece of pizza and lost my appetite.. I don't think I need to explain why I am on disability she knows I have Chronic depression (Severe) ... She knows I have CML but I reminded her again. I am in mourning still ... I cant deal with the likes of her. Her own daughter has depression. She tells me she can just hear her mother talking to me at lunch and said she was sorry about her mom. Disgusted with non believers in regards to depression. Social security Medicare are for us too even though we are 58  or what ever age we have worked for that money.  I had to take a nerve pill in front of her and the people in the booth across from us probably heard me say stuff about me so embarrassed.

Try to get on disability if you can it is worth it.

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