33 replies to this topic

[JohnFromChicago]

Just curious what everyone was told when they were diagnosed with regards to these. I saw three different oncologists when I was diagnosed. All three seemed to have very different views on these. Obviously moderation for all three of these is important for your health for anyone regardless of if they take any daily medications or have CML. I know peoples experiences with oncologists suggestions for these will also probably vary depending on age and if they had any preexisting conditions. I am a 28 year old male and did not have any preexisting conditions before CML. My thoughts based on research in this forum and across a few other sites are as follows. 

 

Caffeine - One oncologist told me I should no longer have any caffeine. Another said a moderate amount about one (measured) cup of coffee a day was OK as long as I did not drink any pop throughout the day. (I have never drank pop). A third said they were not aware of any reason to reduce caffeine intake. They suggested simply to drink less than the daily limit for healthy adults which is 400mg per day (four measured cups of coffee). I decided I would just decrease my caffeine intake to two cups (200mg) on work days one cup on weekends. Before diagnosis I would have three measured cups most days. Measured cups(8oz) are much smaller than most starbucks sizes...starbucks tall is 12oz. 

 

Sun Exposure - One oncologist told me I should have no sun exposure except without being completely covered in protective clothing...long shirts, pants, hats, ect. This made me really sad as probably one of my favorite things is being outside in Chicago in the summer I enjoy outdoor activities on most nice weekend days jogging, swimming, boating, volleyball ect. I also like visiting beaches and being outside on vacations in the winter months. The other two oncologists said there was not any risk of being out in the sun as long as I wore sunscreen and did not get sunburnt. They both said my skin would be more prone to getting burnt while being on Sprycel so I should be vigilant to make sure I did not get sunburnt. I still enjoy being outside on vacations and I plan to enjoy jogging, swimming and boating this summer in Chicago as I always have. Only change I have made is the be certain I put on SPF 30 when I am going to be outside longer than 30 minutes. Before diagnosis I did not always wear sunscreen which was probably not smart anyways. So far I have not noticed any changes in my skin sensitivity to the sun. I was on the beach in Florida for a few hours and an all day Kayak trip in the Keys as well. I put on SPF within 30 minutes of being outside and I was outside for 6 hours the day of the Kayak trip and I did not get burnt. I have heard some people having extremely different reactions so I think it is important to be careful with this. Maybe I just got lucky this does not affect me much possibly because I have an olive skin tone.

 

Alcohol - One oncologist told me I should not have any alcohol ever for the rest of my life. This made me pretty sad as I am only 28 and I enjoy occasionally meeting up with friends for drinks. I also have quite a few weddings for my friends and probably myself within the somewhat not too distant future. The other two oncologists said that I could have a few drinks occasionally as long as my blood tests are always normal. I did not drink for the first 2 months after diagnosis. I waited till my liver enzymes and blood levels had been normal for over a month before having my first drink since diagnosis at a friend's destination wedding in Florida. Since then I have enjoyed having a few drinks occasionally. I limit myself to only once a week. I am not sure this is really necessary and I may allow myself to have two nights of cocktails in the future (basically just on vacations or when I have two events in one week) but for now I feel a maximum of one night a week is a safe amount. I don't count the number of drinks I have but I don't allow myself to get to the point where I am drunk or have any type of hangover the next day. I feel if you have a hangover you are probably doing yourself harm with or without TKIs. I did on one occasion while celebrating a good 3 month PCR test result with some friends who bought me a few too many drinks and got drunk and had a hangover the next day. I felt really guilty about this at first but I tried not to beat myself up over it. 

[scuba]

John,

 

I can't stress this enough .... live your life normally. You don't have to change anything you do. If you drank coffee before - you can continue to enjoy a cup of coffee now. Avoiding the sun makes sense only if you have a reaction to it - usually when your vitamin D level is low to begin with (keep your vitamin D level above 50 and less than 100 and you can enjoy the sun most likely). 

 

And finally - alcohol.  If you drank before and are not an alcoholic, then continue to drink the way you used to now. The TKI's are not affected in their work by alcohol. It does tax the liver - so monitor the enzymes. If the enzymes are normal, you're fine.

 

I am a cigar smoking (occassionally), wine/scotch drinking (every day), coffee imbibing (all morning long), new sun worshiper (no more sunscreen - ever) CML'er. I am also PCR <0.01% on 20mg Sprycel. And I actually have a tan.

 

Enjoy your life and enjoy the lives of those around you! You are absolutely going to be fine. CML will be history for you. 

[Antilogical]

The first question I asked my hem/onc after learning that I had CML and that I would be treated with the "miracle pill" was "Can I still have a glass of wine with dinner?".  He said "Sure.".  So I do.  I also continue to enjoy my morning coffee.  As far as worshiping the sun, I usually burn before tanning, so I always use sun block and a hat.  In those respects, my life hasn't changed a bit.

[JohnFromChicago]

John,

 

I can't stress this enough .... live your life normally. You don't have to change anything you do. If you drank coffee before - you can continue to enjoy a cup of coffee now. Avoiding the sun makes sense only if you have a reaction to it - usually when your vitamin D level is low to begin with (keep your vitamin D level above 50 and less than 100 and you can enjoy the sun most likely). 

 

And finally - alcohol.  If you drank before and are not an alcoholic, then continue to drink the way you used to now. The TKI's are not affected in their work by alcohol. It does tax the liver - so monitor the enzymes. If the enzymes are normal, you're fine.

 

I am a cigar smoking (occassionally), wine/scotch drinking (every day), coffee imbibing (all morning long), new sun worshiper (no more sunscreen - ever) CML'er. I am also PCR <0.01% on 20mg Sprycel. And I actually have a tan.

 

Enjoy your life and enjoy the lives of those around you! You are absolutely going to be fine. CML will be history for you. 

 

 

The first question I asked my hem/onc after learning that I had CML and that I would be treated with the "miracle pill" was "Can I still have a glass of wine with dinner?".  He said "Sure.".  So I do.  I also continue to enjoy my morning coffee.  As far as worshiping the sun, I usually burn before tanning, so I always use sun block and a hat.  In those respects, my life hasn't changed a bit.

 

 

I am on the same page as you guys. I really don't want to let CML change my life much at all. Luckily it does not affect me at all physically and only some psychologically (which I am sure will go away over time). I don't plan to let it stop me from doing everything I had enjoyed before diagnosis. I do really wonder sometimes why certain oncologist are so strict though when it comes to these. One of the oncologists is very highly rated and well known and I did not bring these up to him, he brought them up to me. The no caffeine one really threw me through a loop.

[scuba]

I am on the same page as you guys. I really don't want to let CML change my life much at all. Luckily it does not affect me at all physically and only some psychologically (which I am sure will go away over time). I don't plan to let it stop me from doing everything I had enjoyed before diagnosis. I do really wonder sometimes why certain oncologist are so strict though when it comes to these. One of the oncologists is very highly rated and well known and I did not bring these up to him, he brought them up to me. The no caffeine one really threw me through a loop.

 

You should ask your oncologist "why" he feels no caffeine ... or no alcohol?  Avoiding the sun is standard because TKI's may interfere with melanin production which protects your skin. I take such a low dose of Sprycel AND maintain a high level of vitamin D so that I do tan and not burn without sunscreen. 

[JohnFromChicago]

You should ask your oncologist "why" he feels no caffeine ... or no alcohol? Avoiding the sun is standard because TKI's may interfere with melanin production which protects your skin. I take such a low dose of Sprycel AND maintain a high level of vitamin D so that I do tan and not burn without sunscreen.

I definitely would if I still saw him but I only saw him once in the first few weeks for a second opinion. I was so bombarded with information in the beginning I did not think to ask. The oncologist who I see now has the most moderate views on these....

Caffeine = no special restrictions
Sun = be vigilant for sunburn
Alcohol = moderate consumption

[MarCap73]

John,

 

I think one thing to consider also is how your body reacts to the caffeine and alcohol intake.  

 

My experience on Sprycel (since November '15) has been that it's caused me to have some issues with insomnia.  From what what I have read on the board here, others have had the same 'side effect', so compounding caffeine to that could impact your overall sleep patterns.  Since my dx, I have been careful with my caffeine consumption by limiting my intake to mornings only.  

 

Initially Sprycel was giving me severe headaches as well as joint and muscle pains.  Red wine in particular is known to cause a lot of people to get headaches, so I avoided it for a while.  I was not advised by my medical team to stay away from alcohol altogether though.   

[thatguy]

I was told no sun by my doc at diagnosis, and he was very pleased when I said I didn't drink. Caffeine wasn't brought up, but he did encourage water, and plenty of it to ease the load of the drug on my kidneys and liver.

[JohnFromChicago]

Seems like all oncologists have suggested no sun. My oncologist didn't seem to think there was any problem with it as long as I did not get sunburnt. Does anyone know if there is any other risks to sun exposure with CML or TKIs. I couldn't imagine it would decrease the TKI affectiveness or risk CML progression seems irrational. Obviously avoiding skin cancer by SPF use is important but are there any other risks specific to CML besides this.

[scuba]

... way back in 1993 they learned how important the sun is to reducing cancer mortality:

 

http://www.ncbi.nlm..../pubmed/8475009

 

including leukemia:

 

"metabolites of vitamin D have induced leukemia and lymphoma cells to differentiate, prolonged survival of leukemic mice, and produced complete and partial clinical responses in lymphoma patients having high vitamin D metabolite receptor levels in tumor tissue; (d) sunlight has a paradoxical relationship with melanoma, in that severe sunburning initiates melanoma whereas long-term regular sun exposure inhibits melanoma; (e) frequent regular sun exposure acts to cause cancers that have a 0.3% death rate with 2,000 U.S. fatalities per year and acts to prevent cancers that have death rates from 20-65% with 138,000 U.S. fatalities per year; (f) there is support in the medical literature to suggest that the 17% increase in breast cancer incidence during the 1991-1992 year may be the result of the past decade of pervasive anti-sun advisories from respected authorities, coinciding with effective sunscreen availability"

 

I will never wear sun scren again - I have started increased my noon time sun exposure ( I go for my 3 mile jog at lunchtime). And I make sure my vitamin D level is in the 70's range (ng/ml) - up from 17 at CML diagnosis. My wife no longer wears sunscreen and works topless in the garden or by the pool when the weather is nice and we're home. I go topless too by the way. 

 

And today they continue to report the benefits:

http://www.techtimes...cancer-risk.htm

[JohnFromChicago]

... way back in 1993 they learned how important the sun is to reducing cancer mortality:

 

http://www.ncbi.nlm..../pubmed/8475009

 

including leukemia:

 

"metabolites of vitamin D have induced leukemia and lymphoma cells to differentiate, prolonged survival of leukemic mice, and produced complete and partial clinical responses in lymphoma patients having high vitamin D metabolite receptor levels in tumor tissue; (d) sunlight has a paradoxical relationship with melanoma, in that severe sunburning initiates melanoma whereas long-term regular sun exposure inhibits melanoma; (e) frequent regular sun exposure acts to cause cancers that have a 0.3% death rate with 2,000 U.S. fatalities per year and acts to prevent cancers that have death rates from 20-65% with 138,000 U.S. fatalities per year; (f) there is support in the medical literature to suggest that the 17% increase in breast cancer incidence during the 1991-1992 year may be the result of the past decade of pervasive anti-sun advisories from respected authorities, coinciding with effective sunscreen availability"

 

I will never wear sun scren again - I have started increased my noon time sun exposure ( I go for my 3 mile jog at lunchtime). And I make sure my vitamin D level is in the 70's range (ng/ml) - up from 17 at CML diagnosis. My wife no longer wears sunscreen and works topless in the garden or by the pool when the weather is nice and we're home. I go topless too by the way. 

 

And today they continue to report the benefits:

http://www.techtimes...cancer-risk.htm

 

I found both these articles very interesting, thanks. Scuba, I think you have convinced me to get my Vitamin D levels tested. Not sure I can justify taking a day off work just to have my Vitamin D levels tested and my next appointment is not till mid July. Now that my FMLA has expired I have to use vacation days for my doctor's appointments. Considering using one of these tests, ever used one?

 

http://www.amazon.co...=vitamin d test

[scuba]

I found both these articles very interesting, thanks. Scuba, I think you have convinced me to get my Vitamin D levels tested. Not sure I can justify taking a day off work just to have my Vitamin D levels tested and my next appointment is not till mid July. Now that my FMLA has expired I have to use vacation days for my doctor's appointments. Considering using one of these tests, ever used one?

 

http://www.amazon.co...=vitamin d test

 

 

You can go to any lab test (e.g. https://www.anylabtestnow.com/)and have a test done (Saturday's, lunch hour, ...no need to use vacation days or see a doctor for this). Interpreting your vitamin D level is simple:

 

Below normal < 30ng/ml

normal is reported as between 30 - 50 ng/ml (some report between 30 and 100 ng/ml)

Excess > 100ng/ml is not desirable (hence the reason to test, but few people will ever see a level like this) and can cause hypercalcemia. So 'more vitamin' is not better vitamin. Vitamin D requires monitoring until you get a sense of how your body responds over the course of a few years.

 

For disease/cancer management keeping a level above 50 and below 100 is suggested. I keep mine between 60 and 80 (currently 72 at last test). It takes 5,000 IU's a day in summer and 5,000/10,000 IU's in winter for me to maintain this level. Dose varies by person hence the need to test.

 

On a side note - I have not had so much as a cold/flu or sniffles since getting my vitamin D level up. I just don't get sick anymore like I used to. Consider taking vitamin K2 with vitamin D3 (D3 converts to D in the body), the both work together to manage calcium in the body.

[Gail's]

Scuba, how do you get a vit d test without an order? I was thinking John could try an after hours or weekend "doc in a box" not really an urgent care office but those who provide a routine office visit & usually limited labs right in the office.

[JohnFromChicago]

Scuba, how do you get a vit d test without an order? I was thinking John could try an after hours or weekend "doc in a box" not really an urgent care office but those who provide a routine office visit & usually limited labs right in the office.

 

 

You can go to any lab test (e.g. https://www.anylabtestnow.com/)and have a test done (Saturday's, lunch hour, ...no need to use vacation days or see a doctor for this). Interpreting your vitamin D level is simple:

 

Below normal < 30ng/ml

normal is reported as between 30 - 50 ng/ml (some report between 30 and 100 ng/ml)

Excess > 100ng/ml is not desirable (hence the reason to test, but few people will ever see a level like this) and can cause hypercalcemia. So 'more vitamin' is not better vitamin. Vitamin D requires monitoring until you get a sense of how your body responds over the course of a few years.

 

For disease/cancer management keeping a level above 50 and below 100 is suggested. I keep mine between 60 and 80 (currently 72 at last test). It takes 5,000 IU's a day in summer and 5,000/10,000 IU's in winter for me to maintain this level. Dose varies by person hence the need to test.

 

On a side note - I have not had so much as a cold/flu or sniffles since getting my vitamin D level up. I just don't get sick anymore like I used to. Consider taking vitamin K2 with vitamin D3 (D3 converts to D in the body), the both work together to manage calcium in the body.

 

 

Thanks! My oncologist will order the lab no problem if I send her a message over the hospitals iphone app (she did this for me for magnesium without an issue) Only problem is the lab at the hospital closes at 500pm. They open at 800am but I recently found out everyone goes at 8am and I ended up being over an hour late for work last time I tried this 

 

Luckily I just realized I have a holiday coming up...Memorial Day! and the lab has regular business hours on this day!

 

Working in the financial industry has its perks when it comes to banking holidays great for running errands since most other business are open.

[DebDoodah22]

Thanks for the testing link,,,good info.

[PhilB]

I'm sorry, I've resisted saying anything for days, but each time I check the board I see the title of this thread and I always think: 'Sounds like the agenda for a perfect day to me'

[scuba]

I'm sorry, I've resisted saying anything for days, but each time I check the board I see the title of this thread and I always think: 'Sounds like the agenda for a perfect day to me'

 

... yep...in that order.

[rcase13]

... yep...in that order.

I wish, I can't do any of those things.

 

At my next appt. which will be 1 year 9 months! (my goodness it went fast). If I am still PCRU and liver numbers haven't done anything scary i will ask if I can have one beer!

[JohnFromChicago]

I wish, I can't do any of those things.

At my next appt. which will be 1 year 9 months! (my goodness it went fast). If I am still PCRU and liver numbers haven't done anything scary i will ask if I can have one beer!

Your oncs level of strictness sounds like the first onc I went to I like my current oncs rules the best out of the three I saw when I was diagnosed...

Caffeine = no special restrictions
Sun = be vigilant for sunburn
Alcohol = moderate consumption

[winespritzer]

Wow, am considering moving to Florida.
Is this not a good idea? Am on 100 mg sprycel.
Going to an outdoor wedding in Palm Beach very soon. Wearing a hat. Hope it's enough.
Am allergic to sun tan lotions...so I never use it.
Winespritzer