Just wondering how working shifts will be combined with CML and in my case Gleevec.
After being on sick leave for almost 8 weeks now, i see how important daily routines are for me in combination with TKI therapy. (Breakfast with Gleevec at 09:00, lunch at 12:00-13:00, dinner at 16:00-17:00 and so on)
A typical 3 week work schedule for me prior to getting CML would be:
Week 1: 4 night shifts from 23:00 to 07:00
Week 2: 2 Morning shifts from 07:00 to 15:00
2 Evening shifts from 15:00 to 23:00
1 Morning shift from 07:00 to 15:00
Week 3: A few days off, then 3 evening shifts from 07:00 to 19:00 (12 hour shifts)
Im not sure how its possible to combine this work schedule with tki therapy, and i used to get tired from switching from night shifts to morning shifts before i was dx`d, wonder how it will be now.
I am 8 weeks into treatment, and my side effects from G are not very bad, but i do get fatigue, edema and sometimes i get abit nauseated.
Any recommendations and experiences would be very welcome.
I would also like to know if there has been performed some kind of research on the area of cancer and working shifts?
I have no suggestions for you, I am in awe of the people who continue to work, although I do things around the house, groceries, and other 'jobs', I do not believe I could hold down a regular job at this time. You all that are working are amazing to me. I am positive you will receive lots of great advice from other members, and best of luck working around your shift changes and the Gleevec!
I don't know about research on cancer and working shifts, but I do a good bit of client travel that takes me through various time zones. I live in the Eastern time zone, and I've been traveling to Pacific, Mountain, Central, and GMT (East Coast + 5 hours). I have a business trip roughly every other week or so (lighter in the summer right now, yay!), so my body goes through this quite a bit. I also take Friday red-eye flights back to the East Coast from Pacific trips ... and no, I don't sleep well on red-eye flights, so I'm probably putting my body through some extra stress by taking a short nap on Saturday morning after I arrive, then fight through the day so that I'll crash early and get reset to Eastern time zone quickly.
This intense travel routine hasn't affected my response to treatment (Gleevec 400mg), but one thing I do is keep my dosing schedule at the same time on the Eastern time zone (which for me is breakfast around 7am ET). So when I'm on PT, I'll take Gleevec at 4am, and when I was in London I took it with lunch (7am ET = 12pm GMT). That seems to be serving me well...
Hope this helps -
As you have read from others, side effects are different per individual. You will probably experience fatique, especially at first. I did. Then it went away for the most part. Now it seems I get some every now and then. Mostly when I don't get a good nights sleep, >7hrs. The other thing that is VERY important is your diet. Look into juicing vegetables and fruits. For me it makes a huge difference. It also doesn't hurt to excersise. Get into either running, biking, elyptical, etc for cardio.
Wow, Teddy! That's quite a schedule! How do you keep that from messing up your biorhthyms? My BIL was a state cop for many years, and he had rotating shifts, every few weeks he went from day to evening to night shifts. He had a hard time adjusting to it, even though he did it for 20 yrs. By the end of week 2, he would adjust to the schedule, then at the end of week 3, he's be working a different schedule. Drove him nuts, and my sister, too, since she had to put up with him.
If you've been handling that schedule pretty well prior to dx, give it a try and see how it goes. Can you open up with your employer and discuss options re: your schedule? Just in case?
I'm wondering with your schedule how you will fit in taking Gleevec. Would you have to set an alarm to wake up and take it to stick to the same schedule?
Boy that's a tough scheduel, I know a lot of people take their tki at the same time everyday, I usually take my Sprycel in the afternoon because I have to fit it in with all the other meds I take, and I like to take my S without taking any other meds with it.
If I were you I would probably take my Gleevac with my supper everyday, no matter what time zone you are in. That way if it makes you extra tired or if you get nauseated, you'll be able to rest. I would assume your body will adjust better to your meal schedule, instead of a time zone. You will be tired for a while,it takes our bodies a few months to adjust to these tki's. When I was on Gleevac I always had hard peppermint candy with me it was the only thing that helped me with nausea. Peppermint Altoids also help. Good Luck Billie
When I first returned to work 3 weeks after beginning treatment, I was battling a lot of fatigue. Taking B-12 vitamin supplements and extra strength 5 Hour Energy Shots helped a lot, and so did drinking 2-3 L of water everyday, and eating the healthiest, most nutrient and vitamin-rich diet I could. The shots are a huge dose of B-12, something like a 9000% daily dose. This is not a reasonable long-term solution because I believe that you quickly develop a tolerance to the 5 Hour Energy Shot, but it might buy you some time to get through the period of fatigue, if it is in fact temporary. That period that lasted me about 2 months after starting Gleevec before going away.
Good luck with that. I agree with how helpful keeping daily routines can be, like exercise and a regular sleep schedule. At least for the first few months, which is all I can attest for.
Thanks for all the replies guys!!(And girls)
Pam: Not sure how it will go yet, but im starting up slow next week with only one work day pr week, and not on shifts to start with.
Dan: Seems like you are doing well combining work with tki therapy, and that changing timezones seems manageable even on a tki.
Trey: Fatigue is actually the worst side effect i have at the moment, but i hope it will get better before i start working shifts.
Cliffee: Thanks for the tips, i do a 30minute walk or bike ride each day, i feel better when im in movement Also my diet hasnt been the greatest, i dont exactly eat unhealthy, but i guess i could eat a bit more healthy. As for the sleep, there is my damn mind, witch wanders off into not so nice places when i try to sleep (anxiety), but it seems to be getting better and better.
Happycat: My biorhthyms have been messed up for many years cause of the shitwork, but i have kind of liked working nights
I might ask my employer to keep my on a daytime job for a while, to see how working and CML go`s. I think i would have to take my Gleevec at dinner time for it to work with the shifts, then i could take it at home or at work, i just have to remember taking it
Billie M: Taking tki without any other meds is something i like to do aswell, i always let there go a few hours between Gleevec and anything else. I also have been thinking about taking my tki at dinner time if im going to return to shiftwork. Peppermints, mmmmm, i always have 2 different flavor candy in my pocket at all times, one is peppermint Also ive started to take a small piece of pickled ginger each day (the one you get with sushi), and that seems to have helped. (Or its just the body that has adjusted to G better)
Overcast: First let me start by telling how sorry i am Gleevec didnt work out for you as you had hoped, as the side effects on 400mg werent bad for you. Lets cross our fingers, and hope Gleevec will work in the next 3 weeks before starting Sprycel. If not, im certain Sprycel or Tasigna will work well, man its good to have options, lets be thankfull that we got CML in 2012 and have those options.
I had major amounts of B12 in my body, so im not sure about the B12 shots, but im sure a good healthy diet will help alot.
Im glad to say you got better after 2 months, i am there now, and im hoping for some improvement soon.
Billie: How does taking your tki in the evening work with alcohol? Would it be ok to take a glass of wine or two close to taking the tki?
Any others taking their tki at dinner/night who also may have experiences in this kind of thing?
I was thinking of taking it for with dinner or evening meal, but i too, like Dan, like to take a small glass of wine or two in the evenings.
Maybe swallow Gleevec down with wine? (Just kidding )
PS: Had my third checkup (2month) and all was well
HB: Dont remember
Started on 400mg Gleevec and Allopurinol.
2 week checkup:
Spleen: Halved in size.
4 week checkup:
Spleen: He tried to find it and after a while said he could barley feel it.
8 week checkup:
Spleen: No trace of spleen.
Kidneys and liver: Fine
Platlets were abit low, but nothing to be concerned about.
I had some bloodwork taken at my local Doctors office about 3 weeks ago for checking mineral/vitamin levels, and it said my wbc was 3.8, my Onc said wbc levels go abit up and down and that was nothing to be concerned with as all the other numbers were good. PHEW
So it stil seems my water dissolved 400mg dose of G is doing its job, and i sure hope it continues to do so
Going to be 6 weeks until my next checkup because of summer vacation, so i thought id have my blood taken locally in around 3-4 weeks time, just to check my WBC count and HB level. If WBC has gone up i will call my Onc and demand a earlier appointment.
My husband has continued working his night shift job over the past year since diagnosis. He works 10:30pm-6:30am five nights a week and then switches to normal days for the weekend. It has been really hard for him with his medication. He took off the first 8 weeks he started Tasigna, which he really needed cause he was exhausted. Heck, he was exhausted before the CML. Switching between days and nights is enough to wear anybody out.
He really struggled at first with the timing of his meds (2x a day within a 3 hour fasting window). We ended up getting him a watch with an alarm and he takes it at the same time every day. He has an extremely busy job that makes it very difficult. That also means he goes to bed and then wakes up from his alarm 2 hours later, takes his pills, and then goes back to sleep.
My husband's main side effects are nausea, rash, and fatigue. Just like you that switch from day to night was hard before, and it is still hard now. We did switch our diet to Paleo/Primal six months ago and that has made a big difference in his fatigue. He is still tired but he is finding it much easier to wake up in the afternoons and much easier to stay awake in the early morning hours.
And like you we total suspect his shift working is related to his cancer. You know researchers did decide to add night shift work to a list of probable carcinogens. Check out this article. http://health.usnews.com/usnews/health/healthday/071205/night-shift-work-may-heighten-risk-for-cancer.htm
Sorry, I feel like I rambled.
Thank you for replying themarlatts.
Its good to see someone else with CML still is working shifts, and for your husband it seems to be going well after making some adjustments with food etc. I am not sure if i want to continue shifts, or if i will try to ask my employer for a permanent daytime deskjob. I will see how the side effects go i guess. My employer is so far VERY understanding, and i will be starting up very slowly next week with daytime work, to see how it go`s.
We can be on sick leave up to one year, but i want to try to come back to work as soon as possible if my health lets me. (Not that a house and 2 small children keep me bored , but i was very fond of my work, and the people i work with)
For now i have been eating what i want, cause i really could need some extra weight, but im trying to keep my meals on a regular schedule. (Max 3-4 hours apart) Thank you for the Paleo/Primal tip, i will need to check that out.
I think for now, i will take my Gleevec dose at breakfast, and when/if i start working shifts i will probably start to take it in the afternoon/evening.
He definitely would like to work days but it will be many years before he has enough seniority. His company doesn't really care about his CML and wouldn't give him a day position. It is absolutely amazing to me. He feels kinda trapped there since his diagnosis since he wants to keep his paid disability leave since he doesn't know what the future holds health wise. I really feel bad for the guy cause he hates it!
I understand about the kiddos keeping you busy. We have three little ones and homeschool so it is pretty much a madhouse most of the time. I think he was a little bit happy to go back to work after those first two months. ha
We blog about his cancer if you wanted to check it out. Not too much to write about these days. http://joshvscml.blogspot.com/
Good luck with everything!
Sorry to hear your husband feels bad in his work situation, i hope things get better.
3 kids and homeschool, then you probably wont get bored anytime soon
My youngest just got the chickenpox, so he is home with me while my better half is out working.
I had my first day at work yesterday, and it went great, only 4 hours though, and then 4 more hours some time later this week.
My main side effect issues now are skin related, i get very dry skin, especially around the eyes and on the face, it gets so dry the skin tears some places, its really annoying but not very painful. Ive tried a lot of creams but nothing really helps that much, hope it gets better soon.
I will check out your blog
Hi Teddy B,
I have real dry skin also, I use Lubriderm,& Gold Bond Ultimate,or CereVe they are all good. My dermatologist recommended the CereVe because it also has a moisturizing body wash, None of these products have any type of perfume in them so you won't smell girly,girly. There are also facial moisturizers for men. My Derm. also told me to use Aveeno products on my face,which I do and it works very well for me. I was on Gleevac for 3 years and all that time I had racoon eyes, so I can't help you there. As soon as I went off G the swelling went down but now I have wrinkled eyelids. Don't you just hate when that happens. I have a heck of a time putting on my eye make-up. Oh by the way I am a female,some people get confused because of my name. Sincerely Billie
ps exfoliating really helps a lot,but I'll let your wife explain that
Thank you Billie, for all those tips, i will try to find some of those products here in Norway.
Its a good thing i wont smell girly girly, but i think i would have swallowed my pride and used them even if i did
Racooneyes sound fairly similar to what im having(dark/red around the eyes), but it seems to be getting a bit better now actually.
Wrinkled eyelids does not sound fun, mine are more soar than wrinkled at the moment.
I thought you were female as ive seen other posts by you
You seem very active in this community and for that i am sure people are greatfull, i know i am.
As for exfoliating, ill get my better half to help me if needed.
By the way, shes not my wife just yet, but we do have plans
Did you find that the dry skin got better over time after starting G, or was it always bad for you over the three years?
Ugh, yesterday was a bad day for me as i was quite nauseated the whole day, (Ive had almost no nausea for 2-3 weeks now, yay) but today seems much better thank god.
My Gleevec seems dissolved now so i better drink it while its "hot", damn it tastes funny, the weird thing is ive gotten so used to it, its just like having a regular glass of juice
That glass looks like it needs a shot of vodka in it! Unfortunately I have been a sun worshiper all my life, so I have been dealing with dry skin for quite a while. I'm paying for all those years of laying in the sun. I'm fair skinned so I burn easy. Did I use sunscreen- NOO did I limit my time in the sun NOO did I suffer from many bad sunburns-YESS! did I turn right around and go out in the sun and get burned again-Yess! My poor mother was always dragging me out of the sun. We made a couple trips to the emergency room, I blacked out 2 different times, and I got sun poisoning a couple times. I drove her nuts. But we live right along Lake Erie and going to the beach was just a part of our lifestyle. Especially when I was a teenager. All my friends got nice and tan, and I always got nice and red. So using a moisturizer is pretty common living around here.
As far as wine goes, my philosophy is, if you have cml you must drink wine, all my doctors tell me to drink wine, even my oncologist. They say a few glasses of wine is good for us, so I went out and bought some really big glasses! I hope your nausea is better, the weird thing about tki's is you can feel great for a while then the side-effects show up again for a few days and go away again. You will adjust it just takes a while. My problem is I have 2 other health problems and my blood pressure went up last fall, so I'm on a bunch of meds. I think if I was just on Sprycel I'd feel pretty damned good. And I could go kayaking with Marnie. Or Buffalo hunting or whatever she is up to. She also rode her motorcycle alongside a moose. (I think her wine glasses are bigger than mine)! Take Care Billie
Thanks Billie. Your sunburns sounds a lot worse than mine were during my first CML summer.
As for the Vodka, i havent had much hard liquor since dx, only a few glasses of Whisky, but im pretty sure mixing vodka with gleevec would be a disaster
Hope you and your husband are doing well.
PS: Sorry for the late (half a year) reply
I had fragile skin when I was on Gleevec. My doc recommended Dove unscented soap and I also found that Aveeno lotion helped a lot. I don't have the fragile skin anymore, now that I'm on Sprycel, but I did end up with a weird rash on my legs last week. Don't know if it's from the Sprycel, or the extended 100+ degree weather we're having here in Colorado.
Seems Aveeno is the way to go then, since both you and Billie recommend it.
Sorry to hear about your rash, hope its feeling better, warm and humid weather also makes my rash worse, but its not that big of a deal at the moment since it doesnt even itch, it actualy seems to be fading away now, and the dry skin seems abit better after a few days of very high water consumption and less wine (Not that i drink a lot of wine, but i tend to have a glass of red wine in the evening)
Hi All, I was diagnosed a year ago May 2011 i started on Tasigna had a lot of problems and switched to Gleevec. I also have experienced many side effects but lately the worse is fatigue, swelling and nausea. I have been fortunate that my job has allowed me to work from home and i continued working. Unfortunatley, I have heard that after 25 years of working my position has been eliminated tough place to be at 49 with cancer. So i have a question, does anyone know or has anyone gone on Short Term Disability thru there diagnosis. And how about Long Term Disability with CML. This is becoming a very difficult time for my family financially and dealing with cancer. I need to protect them and if means pursing STD and LTD then I need to. Does anyone have any info on CML and LTD?
Sorry to hear about your job. As for std and ltd, it depends on your company. It's an insurance product, basically, so they pay a premium to get a certain amt of coverage. Thus, you need to speak to your HR if possible. Other option is to explore a discrimination case. I'd be suspicious that your position got eliminated because your healthcare was costing too much. That's how they get around it though. They eliminate your position, so it doesn't look like they are going after you personally. (Sorry, I can be a cynical skeptic, or a skeptical cynic, take your pick.)
At my company, I have 90 days std at full pay, then 6 months ltd at 2/3rds pay. They changed the ltd drastically. Used to be 2 yrs. Plus, HR told me if I didn't return after those 6 months, they could just fire me. Even if doctor said I was too sick to work, at 6 months plus 1 day, I'm out the door. Nice, huh?
I hope you can get the answers you need and will be able to find a new job.
Have a look at this discussion http://community.lls.org/message/104206#104206