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«New York Forum Part 1 September 20, 2014 Page 1 of 30 Speakers: Virginia Klimek, MD Boglarka Gyurkocza, MD Simon Yeung, PharmD, MBA, Lac Jayshree ...»

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The next one I want to talk about is this wheat grass. It’s also one of a very few natural product, herbal product, that’s been studied in MDS patients. You may have (inaudible) wheat grass or wheat grass juice as (inaudible) to you and if prepared was (inaudible) wheat seed for five to ten days in water and they (inaudible) juice drink and many alternative medicine practitioner claim that it can neutralize toxin and carcinogens and also increase (inaudible) in the body. They thought that the (inaudible) and increase in hemoglobin production and this is not being supported by science.

However, there is a study suggesting that it can reduce the need of transfusion in patients with (inaudible) by increasing the hemoglobin level and how does it work. We are not really sure and also there’s some reports suggesting that it can decrease the myotoxicity in breast cancer patient undergoing chemotherapy. So, that’s why many people have been looking into this product and suggesting that cancer patients should use them and in India some people also look into the benefit (inaudible) this morning about the iron overload problem. A group in India looking into whether (inaudible) have (inaudible) and they find that it can reduce the serum ferritin in patient with Myelodysplastic Syndromes. The reason they believe this is because wheat grass contain (inaudible) acid, malic acid. Those confined to the eye and intestine and act as chelating agent, but again this is in a very small group of patient. One thing I do want to caution use is that since this wheat grass juice, the wheat grass are prepared in water and they are consumed raw so this is a high risk of contamination and as mentioned about (inaudible) iron overload whether we should treat it or not we are not really sure, but the risk of infection is very more important. So in this case, the risk outweigh the benefit.

The next one I want to talk about is papaya leaf. This product has never been studied in MDS patient.

It’s marketed as a (inaudible 1:44:50) to enhance the immune system and also improve platelet function. In animal study, it does increase thrombocyte count and also this is one single… report on one single patient that it can increase platelet and neutrophil count for this patient (inaudible) is a secondary (inaudible) infection and people who have that tend to develop bleeding and low platelet count and things like that and perhaps papaya leaf may… as a antiviral effect to lower the virus count in fact on this patient, but this is no evident that it has any hematopoietic activities and again as I said it’s never been studied in MDS patient, but nonetheless many patient have asked us whether they can use a papaya leaf if they have low platelet count and the answer is that currently this is (inaudible 1:45:41) they can do anything for MDS patients.

The next one I want to talk about is ginseng. Ginseng is a type of American ginseng and also Asian ginseng. The one I’m talking about is this American ginseng which is from the United State.

Actually, this is made in the state of Wisconsin. It has been (inaudible 1:46:02) aside from being (inaudible) and also many people who have diabetes also use it because it seems to have high glycemic activities. In cancer patient, not so tend to use them because it has some CNS stimulation and calming activities.

This is one study. Actually this is quite current. Published only one or two years ago. This is one of very few herbal product that’s been studied in cancer patient in large scale. This is a randomized

–  –  –

control trial. It showed that American ginseng extract can reduce cancer related (inaudible 1:46:46).

This is (inaudible) patient and (inaudible) MDS patient. Nonetheless, this is a very good study and did suggest that besides that it can benefit patient (inaudible) it also does not interfere with some of the chemo drug. So, some physician actually aware of this study and they may recommend patients using it, but before you start going out to buy American ginseng (inaudible) it is a good thing to check with your doctor to find out it’s cause effective. If it’s due to anemia things like that then they be other better treatment for that but it’s not uncomplicated if you want to try it. Speak to your doctor because American ginseng can interfere with some prescription drugs.

The last one I want to talk about is this (inaudible 1:47:31). This is used in traditional medicine with lung problem and there’s a scientific study showing that it’s a potent immunostimulation activities and (inaudible) toxic activities. Now in China so much as they tend to use extract (inaudible) and mix it with other herbs and it seems to help to reduce the side effect of chemotherapy. Now since there’s some immunostimulant activities, again, this can be very complicated. It can mean a lot of thing, but there’s this one in (inaudible) study suggesting that it can active counteract with the effect of some immunosuppressant drugs and this (inaudible) study also suggests that it can increase the risk of graft versus host disease. So before you buy this one and if you (inaudible) transplant patient and this is something you should be aware of.

So, I wanted to move on just to mention a few thing about the safety concern of (inaudible) in general. The first of all, most of the product on market are not standardized. That means if you buy something brand A they may (inaudible 1:48:34) amount than brand B even though a study used brand A, you may not have the same benefit when you buy a product from another company. Also many of these product attempt to be… they’re prone to contamination and (inaudible). The contamination is a big thing. Contamination can be contaminated by heavy metal and can be contaminated by microbial. You know, virus, bacteria and things like that and in MDS patient who are neutropenic and this can be a big problem and that (inaudible) is sometimes connected the manufacture did purposely put something in there (inaudible) on label and they’re very… they are faced recalled for example that people market things for sexual dysfunction. They actually have Viagra constitutes in there because (inaudible) imported from another country where they have less stringent law regulating this product.





Then there’s (inaudible 1:49:28). As mentioned something like cacumen. Even though they can be effective in the lab and individual study, but when you take it it has to be absorbed in the body and carried by blood (inaudible) it could be effective and if they’re not being absorbed then you have no benefit and sometimes we do not know what is a proper dose to use and, again, not that many product has been studied (inaudible) like we did in the maitake study. So, if you take another product (inaudible) a dose and you don’t take enough you have no benefit, but if you take too much of them, you have toxicity and finally it is a concern of herb and drug interactions. Now herb and drug interacted (inaudible) like drug interact. They can go from many different mechanisms sometimes pharmacokinetic that means a drug can affect absorption, distribution, metabolism of a drug and also some of the (inaudible) dynamic. That means an herb can affect how a drug work, but in cancer patient setting these are four drug I tend to see the most common. The first one is when people use a blood thinning herb and they’re using anticoagulant together. Now in this (inaudible) even though if MDSF2014-NYC-1 New York Forum Part 1 September 20, 2014 Page 27 of 30 you’re not using anticoagulant if you have a low platelet count or from cytopenic, you may want to avoid any (inaudible) activities because it can increase the risk of bleeding. Another one is this herbal part of the supplement has antioxidants and they can interfere with some of the chemo drug used even though in MDS patients the chemo drugs is by MDS patient they tend to not to go with a (inaudible), but other drug like Dr. (inaudible 1:51:09) was saying (inaudible) compound used in other anticancer treatment. Antioxidant may make those drug less effective. And the third one is this herb that has (inaudible) activities and for people who have (inaudible) of cancer again will (inaudible) maybe like breast cancer, prostate cancer, those type, some herbal product can interfere with (inaudible) treatment and finally there’s this herb that has immunostimulating effect versus patient are using immunosuppressant drug and this is (inaudible) concern like (inaudible). So before you run to buy some of this product, make sure you’re aware of this potential interactions.

If you decide okay I want to use a particular product and my doctor says it’s okay. So, how can I find a good quality product? There are a few things that you can do. You can look for a product that has this either one of these logo on it and this independent institution or organization that evaluate the quality of herbal products and one of them is this United State (inaudible 1:52:20) supplement verification program. Another one is Consumer Labs program and the third one is NSF. They’re very much like Underwriter’s Lab when you buy an appliance. You know that they have actually go for some test, make sure they’re safe. In this case, these three organization they make sure the product that has the logo, the label on it, are not contaminated and they have the stated amount and ingredient as they said on the label. One thing it does not guarantee is the efficacy whether this product is effective because that will be dependent on the clinical study itself.

So finally, there’s just some take home points. Always speak with your doctor about dietary supplement and use. As some of you may be afraid to speak to a doctor because they’re afraid your physician oncologist will disapprove diet supplement use because I said actually the majority and I’m sure the doctors are very eager to feel what (inaudible 1:53:16) you’re using so that they can monitor your use and adverse effect and also select product from reliable sources. Now avoid missing products also. Some people, your neighbor, your friends, (inaudible 1:53:30) they come to you they know you’re MDS or cancer. They offer all kind of product and people start buying a lot of these supplements together. The more supplements you take, the higher risk of interaction. Remember that and be skeptical about unproven treatment recommendations. The conspiracy theory with the big pharmaceutical (inaudible 1:53:53) is actually not true, but one of the sources that many of this dietary supplement has done is a big cause of the lack of funding. They cannot be patent so many feel company are willing to spend money to study, but nonetheless like NIH organization they do provide some type of funding. So in the future, we probably will know more about how these dietary supplement may work or may not work. And do not delay on deferring your regular checkup. If you have iron overload, don’t start rushing to buy a supplement and think they will work. Just check the doctor because sometimes there are other better or more reliable treatment available. Report any signs and symptoms and also in considered noninvasive complimentive therapy. For example, you have anxiety. You don’t need to buy a supplement to do that. Sometimes things like acupuncture or message therapy can be very effective and you can do yourself a lot of good without risking additional interaction of chemicals in your body.

–  –  –

Thank you.

(Applause) Q10: Is the reason you’re not recommending cacumen and Gingerall for patients who are transfusion dependent because you’re afraid of bleeding?

Simon Yeung: That is one of the concern, but the major concern is that these studies are just a very small scale study. We probably would need to study this (inaudible 1:55:35) in combination. This a larger population before we can make the conclusion that this is effective and safe in this population.

Q10: And just one more question. You didn’t mention anything about vitamins.

Simon Yeung: Right. Because my talk very focused on herbal product than (inaudible 1:55:55) another supplement deserve another hour of discussion. However, you do want more information.

Again, I encourage you to look at our website. You can probably find some information on other vitamin that has been studied in MDS patient like someone like I know Coenzyme Q10, for example, is one of the product that has been studied in MDS patients.

Q10: What was…?

Simon Yeung: Coenzyme Q… Q10. Many of those studied, again, tend to be like (inaudible 1:56:23) study of phase one. Nothing that you can draw conclusion recommended as a treatment or recommended in general to all patient to use them. Not yet so far.

Q11: Would medical marijuana have any benefit for MDS patients and is there any particular reason why an MDS patient should not use medical marijuana?

Simon Yeung: I get this question all the time. The first thing I want to tell you that medical marijuana is just not a dietary supplement. Is not an herb they can buy over the counter. This should really be considered as a medicine. That’s why they call it medical marijuana and better yet, I think medical marijuana should be called the political marijuana because people use it or the way they have described it in a patient is very political not medical. Medically marijuana or the active (inaudible 1:57:13) in marijuana has been shown to have beneficiary. THC can reduce nauseous and vomiting and things like that. Whether an MDS patient should use it or not, again, this is something that you need to discuss with your patient…. with your doctor because sometimes a doctor may feel that there are better prescription drug that can address your problem and another thing that you are perfect candidate for medical marijuana. Again, they would direct you to where to get them (inaudible 1:57:44) in New Jersey, you can actually get the smoke form like the part of marijuana, but New York we just passed the law that New York you’re not allowed to get the sniffing form. You can get a brownie and things like that and currently I don’t know… at least Sloan Kettering I understand is not one of the first five or ten hospital in New York that provide medical marijuana at this time.

MDSF2014-NYC-1 New York Forum Part 1 September 20, 2014 Page 29 of 30 Virginia Klimek, MD: I would just add we use marijuana sometimes for nausea in pill form and I guess we can’t prescribe smoking marijuana, but one of the risks with that smoking is there may be a risk of fungal infection if you’re neutropenic. So, (inaudible 1:58:31) to deal with that. I’m not sure we’re… but that is a concern with smoking marijuana because marijuana has other things in it and it can be contaminated with mold.

Jayshree Shaw: I think the important point that they both are saying is that if anybody is interested or think that that would be something they should get or want to use, they need to talk with their doctors and I can only encourage is that have that open conversation like she just asked the question versus saying, “Oh, yeah. Let me go find somebody and give this to me.” So, have this open conversation. I think that’s really important. Go ahead. One more question.

Q12: To follow up on her question, have there been any studies done on the effect of Marinol on red blood cell count?

Simon Yeung: I think maybe Dr. Klimek may know the answer to this one.

Virginia Klimek, MD: Not that I’m aware of. No.

Jayshree Shaw: Marinol is the synthetic for in the pill… in the pill form, that has the marijuana component in it. It’s a synthetic but pill form. That’s what she’s asking whether there’s any direct relation. At this moment, I don’t know of any like (inaudible 1:59:52)… Simon Yeung: Thank you.

(Applause) Virginia Klimek, MD: We have some pamphlets from Integrative Medicine Services Sloan Kettering that will have some of those resources that he had on the slides, the link to the About Herbs which is a really great resource and I think the information about the quality assurance organizations that he mentioned. So, there’s some pamphlets.

Jayshree Shaw: So, we have actually a special treat today in addition to all the lovely speakers that we had this morning. For lunch entertainment we have a special person going to do an entertainment session of music and her song dedicated to her dad. Her name is Jenna Pell. I hope I’m pronouncing it correct. Is that right?

?: She just stepped for a moment.

Jayshree Shaw: Jenna Pell is actually famous. In your books that you have in the back end of it in the highlights part, page 23, her story is noted and her story of her dad who had MDS. There’s Jenna.

Jenna Pell is going to sing a song and it’s called “Kick It In.” Jenna Pell: Okay. I’m going to do that one.

–  –  –

Jayshree Shaw: Go for it. No. Do you have another song? If you have another song, by all means… Jenna Pell: (inaudible) and I thought we were going to do like (inaudible) Jayshree Shaw: No problem.

Jenna Pell: (inaudible) Jayshree Shaw: I thought she was going to do it while people were eating to (inaudible). It’s lunch hour, so I think it’s a good time to stretch and have some food, nourishment and feel free to chat and exchange phone numbers and contact information and we’re going to have like a bit of a discussion session afterwards for…

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