24 replies to this topic

[Fas]

I recently read a piece on the National CML Society website about food and herbal interactions with Gleevec.  The part I found interesting was that some of the foods and botanicals listed were new to me regarding TKI interactions.  A lot of this is familiar to me, but several things listed were not and given that I ingest some of the listed items (garlic, teas) as part of my daily diet I certainly found this information interesting to say the least.  However; I have been doing so for many years, so not too concerned, but interested in knowing others' experiences with items on this list.  Anyone read anything on food or herbal interactions with Gleevec or other tkis that validates this information?

The information below was copied directly from the CML Society Website:

Food Interactions

There are a variety of foods that have the potential to affect the absorption and/or serum levels (the level of drug in a person's bloodstream).

Citrus - citrus fruit, and other items containing citrus, has the propensity to increase serum levels dramatically. This results in the potential for too much drug to be in your system. If you are taking any of the TKIs (Tyrosine Kinase Inhibitors), care should be taken with citrus fruits, particularly grapefruit, grapefruit juice, or grapefruit extract.

Pomegranate - is also known to interact with TKIs and should be avoided.

Lactose Intolerance - Nilotinib (Tasigna) contains lactose (milk sugars) and should not be taken prior to discussing with your doctor. 

Herbs, Botanicals, and Other Products

Some herbs are known to affect the serum level (amount of drug in the blood stream) of therapy agents used in treating CML.

1. Johns Wort - known to DECREASE the serum level of TKIs in the blood stream. This herb should be avoided to alleviate the possibility of hindering the activity of your therapy drug.

The following herbs are known to INCREASE the serum level of TKIs in the blood stream. These herbs should be avoided as they may inadvertently cause accidental overdose of your therapy drug.

Black Cohosh
Cat's Claw
Goldenseal
Kava Kava
Milk Thistle
Valerian Root

There are additional herbal products that interact with TKIs, however the exact interaction has yet to be fully determined. It is suggested that you refrain from the use of the following herbs due to the potential to cause adverse reactions:

Dong quai
Garlic
Genistein
Gingko
Gingko biloba
Ginseng
Ginseng, Siberian
Glucosamine chondroitin
Green Tea
Saw palmetto
Teas (dandelion, pepperment, chamomile)

[GerryL]

Hi,

I drink green tea everyday and use garlic when I cook and I also take Glucosmine and I haven't had any issues with these things.  I do know we have one of our members here who had issues with garlic and his TKI, but I'm not sure of the level of garlic he was taking. 

I would avoid St John's Wort (which is used for depression) and is hard on the liver in the first place as well as decreasing the TKI level, Milk Thistle and Dandelion Tea also interact with the liver, which I'm not keen on. 

[Dina]

I was always a big tea drinker, especially green tea and chamomile tea,

I enjoy cooking and I really miss my garlic now, pomegranate juice as well,

after I've read the same article I've stopped on everything what's on this list.

My doctor has mentioned many times not to take any grapefruit, nothing about this other stuff,

but why would they list them on the National CML Society website if they are completely safe????

I don't get it. Miss my green tea

For three months now since I've started taking the Tasigna I was thinking  to send an e-mail to a CML specialist with this question,

I don't know who else to ask, hopefully we'll get some inputs from others.

[Trey]

I do not consider that to be either authoritative or correct.  They had someone put together that list specifically for them, and I personally do not agree with it in many ways.  The tea issue is actually based on the assumption (foolish, I believe) that getting rid of free radicals in the blood system somehow helps the leukemia.  I expect that I shall hear another ration of sharts from them over my opinion.

[CallMeLucky]

Many people forget the history of the Texas - Canadian War

[hannibellemo]

For some things life is just too short! Abstaining from garlic is one of those things!

Pat

[Fas]

Thank you all for your input.   I appreciate everyone answers and I think it demonstrate to me that we all respond and interpret this kind of information differently.  Some of it just did not make sense to me when I read it, which is why I posted. 

Let me say that I have been on Gleevec for almost 10 years and that entire time I have been eating garlic, drinking green tea often, peppermint tea (to help with nausea) and chamomile to combat sleeplessness almost nightly.  I also love pomegranates and eat them with abandon when in season.  I am not really big on supplements and so can not comment on those.   I also can not comment on TKIs other than my experience with Gleevec and was curious if anyone on any other drug had been told to avoid the things on this list.

First, I have to say that I agree with Pat and that abstaining from garlic is just not an option.  Besides how much garlic do I have to eat to actually impact my Gleevec? 

I also agree with Trey.  I don't think that some of the things on this list have been scientifically validated.  Personally I am not going to alter my use and enjoyment of garlic or green, peppermint, chamomile or any other tea I enjoy based on an interaction that they can not even clearly define at present.  Maybe ingesting these things is why I have been doing ok for 10 years.  I don't know and I am not sure they do either. 

I feel it is somewhat irresponsible to warn when there is either no verifiable link to an interaction or you do not know the nature of the interaction.  If you are going to warn then define more clearly the context or the theory the concern is based upon.  I tend to use list like these as guidelines unless there is clear evidence of a harmful interaction.  If I were getting sick or felt ill from ingesting garlic or drinking tea I would stop.  If my numbers were inconsistent and I had these things in my diet I might cut them out to see if doing so caused a change in my pcr or blood work.  They may well effect some people and in that way maybe like side effects.  We do not all experience the same side effects.  The drugs impact everyone a little differently - perhaps the herbs, food and supplements do as well.

I really appreciate everyone's feedback. 

[Fas]

Gerry,

Thank you for you response.  I agree with you in avoiding any supplement that taxes the liver.   I too have not had a problem with using garlic or drinking teas.  Until there is more than speculation of interaction I won't be changing my love of either.

Fran

[Fas]

Certainly won't hear any sharts from me.  I think you are spot on.

Fran

[Fas]

I soooo agree!  Viva Garlic!

[Fas]

Hi Dina,

I had not heard about the teas, garlic or pomegranate anywhere prior and I have been living with CML for 10 years.  I have also enjoyed all  of these food regularly in my diet.  At this point I see no reason for me to change, but I do understand your concern and why you would elect to opt them out of your diet.  I'd also like to think the National CML Society would have the most current information and that information has been scientifically valid.  I intend to pose a question to their expert panel and ask what is the basis for the warning to avoid garlic, teas and pomegranate.  Be happy to private message you if I get a response, if you like. 

[Gstephens]

Hi everyone,

Thanks for all the comments. I suppose I should finally post to the board. I know many of you and appreciate your friendship and correspondence.

Regarding the list found on the NCMLS site, the list is compiled from information received from the makers of our current FDA approved TKIs and has been reviewed by our medical advisory board which consists of Dr. Michael Mauro, OHSU, Dr. Moshe Talpaz, U of Mich, Dr. Jorge Cortes, MD Anderson, and Dr. Neil Shah, UCSF. This information is shared with the intent to bring awareness to herbs, supplements, etc. that "might" impact individuals or have the propensity to do so. Certain individuals might very well be impacted by some of the items on the list while others have no problems at all. Sort of like that same thing that happens with one experiencing difficulties with one TKI over another. What works/impacts one might not impact another.

As far as having someone put together the list as Trey mentioned, or on "foolish assumption" - no "assumptions" here. We talked with each respective TKIs company to ask what the full list of items that might potentially. The list was assembled from that. It is not meant to alarm or frighten anyone, rather to provide information that may be helpful when discussing their unique case with their physician. Remember, we are all different and what impacts one might not have the same impact on another.

Trey, I appreciate all the work you do on this board. Very good information. We have good information as well and I welcome the opportunity to talk with you sometime and even possibly meet. Feel free to reach out anytime.

So that everyone will know, we are in contact regularly with LLS home office, as well as a number of chapters. Actually got to spend a bit of time with my good friend, Carson Jacobi a few days ago at ASH. LLS also regularly refers people to NCMLS. We are all in this together.

Lastly, the NCMLS is a stand alone, 501 c 3 organization based here in the US and is not an offshoot, chapter, or subsidy of any other CML organization. It is made of people who have experienced a CML diagnosis or have had an immediate family member with CML. We are in this together as part of the greater CML community. We are here to help anyone in the US and its territories in whatever way we can. We are very small, yet growing rapidly.

I wish for each of you a wonderful holiday season and prosperous and healthy new year!

Best!

Greg

[Dina]

Yes of course I would love that.

Thank you so much!

[Trey]

The list on the CML Society website says that teas "interact with TKIs, however the exact interaction has yet to be fully determined".  In fact, there is no evidence at all that teas and TKI drugs interact negatively.  The rationale for putting it on the list was stated as follows back in 2009:

QUOTE:

"Stay away from the green tea and oolong tea.  There is new information that more than one small cup of these tea's a day can interfere with the TKI's.  Why?  It seems that these tea's are such powerful antioxidants that they work too well at removing "free radicals" in the body.  These free radicals/oxidants are part of the reactive oxygen species, or better known as free radicals.  We hear a lot about how "free radicals" are bad and we need to increase our use of antioxidants to get rid of them.  However, our body also uses these free radicals to kill cancer.  The TKI's we take to treat our CML also produce free radicals, that are used to kill CML cancer cells.  So, if we get rid of the free radicals, we block our body from producing them and directly interfere with our bodies ability to attack them.  This was all very eloquently explained at a private meeting of the European School of Hematology, last year which I was able to attend. There are a number of foods and drugs that can interfere in this way."

http://www.mail-arch...m/msg07276.html

I will leave it to anyone to decide for themselves if this passes the reasonableness test for suggesting that people with CML should avoid tea.  I have been drinking various types of tea every day while taking Gleevec, and I reached PCRU in less than 8 months.  I still drink tea every day and take Gleevec.  That is not scientific proof, either, but is more proof than was used by the folks who suggested that we avoid tea. 

Regardless of this discussion, you folks provide a valuable service to CML patients.

[Gstephens]

Just to clarify, we are The National CML Society (www.nationalcmlsociety.org) NOT, the "CML Society" as shared above. There are two organizations with similar names out here. The text you've quoted is from the CML Society of Canada's website. We know the CMLSC and have collaborated with them in the past, however, as I shared in my earlier post, we are not a chapter, offshoot, or division/department of the CMLSC. Yes, our names are very similar, however we are two separate and different organizations.

My reply to this thread has been my first, therefore any mail archives do not contain correspondence from me, nor do not necessarily portray the opinions of myself or the NCMLS.

Like you, I agree that everyone must decide for themselves as to what items, whether it be tea, garlic, etc, they use. Many in our community have been drinking tea, eating garlic, and taking supplements all throughout their CML journey and without impact to their response. The list was only provided to share items that each drug manufacturer thought MIGHT interact with a CML treatment regimen.

I'm so happy to hear that you achieved PCRU in such a short amount of time. Unfortunately it is no so for everyone and we (the NCMLS) want to stand in the gap for anyone on the journey so that they get information that can be of benefit and hopefully avoid any pitfalls down the road.

I appreciate your comments regarding the services we provide to CML patients. Please visit our website www.nationalcmlsociety.org and you will see we do a variety of things to help. We are small, but have been quite successful in helping a number of individuals. We regularly speak with our medical advisors who are some of the world's best. We don't intend or pretend to replace the advice of a CML specialist or someone's doctor, we simply hope to help bridge the gap and make access to these specialists a bit easier.

I would love to connect sometime with you Trey. I've wanted to for some time, however did not want you to feel that I, or NCMLS, was trying to intrude. Please feel free to contact me sometime. I believe you have my coordinates via private message.

Take care and enjoy the holiday!

Best,

Greg

[Gstephens]

Hi CallMeLucky,

I was intrigued by your post regarding the history of the "Texas- Canadian War". I was uncertain on what that implied so I went back through the threads on the board and reviewed some items from the past. So, to clear up any misconceptions, the National CML Society is based here in the US, serves the US population, and is not affiliated with the CML Society of Canada. We know the CMLSC and appreciate the work they do for the CML community in Canada, however, we are two separate and unique organizations. Any posts prior to this thread have not originated from the NCMLS, nor do they necessarily represent my, or the NCMLS's opinion. I have only now posted to the board as the NCMLS name appeared in a google alert, thus I wanted to check it out.

I hope this helps clear the air of any assumptions that the NCMLS and CMLSC are one and the same.

Have a great holiday and don't hesitate to reach out to NCMLS if we can be of assistance to you and yours!

Best!

Greg

[Fas]

Greg,

Thank you for your post. I agree that some people maybe impacted by the list items and others may not be experiencing any difficulty, and think I too stated the same.  My issue was more so about why the recommendations were made.  What is the rationale?  Personally, I want to know the reasoning for what is posted on the website.  I think it is disrespectful to a patient not to explain why recommendations are being made.  Is the tea warning related to free radicals?  Fine - tell me that.  The reason I think doctors, websites, pharmaceutical companies do not post evidence for recommendations is because patients do not hold them accountable for what they are saying, or the actual research study backing the recommendations does not exist.  I can accept supposition - just would like to know that is the basis.  This board and the members who share with openness and honesty their stories and opinions help and support all who are open to the experience to ask better questions and become more aware and knowledgeable advocates.  You stated that the information came from the drug manufactures, but I find it disconcerting that I do not find the same info on the Novartis site, which was the one I just checked, that is listed on your site.  Why was this shared with the National CML Society and not clearly posted on the Novartis site for patients to access directly.  Again is seems disrespectful to me of people who are living with CML and have to take these drugs.  I appreciate your website and information you do provide.  You offer much of value.

Fran

[Fas]

Albeit some of the responses to my question have been a bit off track, I remain a believer that differing opinions are always of value and can lead to better processes in the long run.

Sending all who have participated thanks for your insight and warmest regards for a Happy & Blessed Holiday and Healthful New Year,

Fran

[Gstephens]

Hi Fran,

I appreciate the constructive aspects of your post and will consider those as we continue to develop the NCMLS site. I do find it a little disheartening when it may be implied through the message that I am in anyway "disrespectful" to patients. Believe me, this disease has impacted me on a deeply personal level and to think that someone would say I was disrespectful to our community is really upsetting. I'm sorry that you find aspects of the list disconcerting and I can give you some insights into why you might not find that information prominently posted on some of the manufacturers public sites. First off, so you'll understand our rationale, we spoke with the medical directors at the manufactures to discuss list items that had been assembled after reviewing a number of links on their sites. Then, following oversight of our medical advisors, the items that were of no significance fell off the list. I think it might be helpful to understand how information is "filtered" through manufacturer's sites - it is reviewed by medical advisors and researchers, it moves through the company's advocacy areas, it is given the marketing touch, and THEN it goes to the Legal Department that then removes any items they feel might implicate or create a liability for the company. This is not inherently wrong - it is just business. We both know that CML is not "just business" to us - it impacts us on a daily basis. As I have said, time and time again through posts to this thread, the information is provided as a means to initiate conversation with your doctor, to provide food for thought (no pun intended), and foster engagement in learning more about how to navigate living with CML. I do feel that every person and family living with CML must do the due diligence to check out EVERY bit of information out there, including information on the NCMLS AND the LLS sites.

As you mentioned, we all share experiences to help others who find themselves on this journey. I believe that I have shared with openness and honesty as well. Remember, we're all in this together. The NCMLS is not "my" organization or site alone - it is all of ours (yes, it grew out of something I began in 2007 but it has grown exponentially). It is, rather, a living breathing network of those who know this disease intimately and who want to help. As you, we're going to ask the questions and we are going to continue to search out any information or resources that can provide benefit to the community. No, it is not going to be perfect in everyone's eyes, but it provides a valuable service to anyone on a CML journey. I only wish we'd had the resource back when our journey began.

You mentioned that you had looked at the Novartis site to compare - I'm glad you did. Here are some more links that will show some of the items that were included on the list:

http://www.gleevec.c...jsp#isi-gleevec - much information at the bottom on the opening page, plus links to prescribing information (patient versions and physician versions).

http://www.sprycel.com/index.aspx - information at the bottom of the page, as well as links to prescribing information.

http://www.us.tasign...s.jsp#question5 - also states "Avoid taking other medicines, vitamins, or herbal supplements with TASIGNA that can also cause QT prolongation."

http://www.med.umich...ha/umherb01.htm

http://reference.med...ugid=&drugname= you can do some comparisons here as well.

Please feel free to email me directly if you'd like to discuss further.

Happy Holidays!

G

[Fas]

Greg,

Thank you for the offer to email you directly I will take you up on that  after the holidays.  However; publically I wish I to offer my sincerest apology.  It was not my intent to imply that you personally or the National CML Society is in any way disrespectful to patients.  My intent was to express what has for me been a fairly consistent experience in my journey - not being respected for my expertise as one who lives with this disease and takes and suffers the side effects of TKI medications.  We too are experts and I feel that is often forgotten by the pharmaceutical companies and sometimes by our own doctors.

I very much appreciate what you have created and continue to grow.  Believe me albeit I may not have expressed it well I do want to be one who supports and helps this living and growing organization not one who distracts from the mission.   You provide a valuable service and I never wanted to imply otherwise. 

I thank you for you running down the process of how information is reviewed and filtered through the pharmaceutical company websites.  It is business to them, but life to us and frankly from where I sit the two are not comparable.  It is hard enough living with all that we sometime have to live with, so thank you for helping to make accessing information easier.  Thank you for links you shared.

Be well,

Fran