Our mission is to increase endometriosis awareness, fund landmark research, provide advocacy and support for patients, and educate the public and medical community.
Founders: Padma Lakshmi, Tamer Seckin, MD
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Patient Day 2019: Panel Discussion & Closing Remarks

Patient Day 2019: Panel Discussion & Closing Remarks

Patient Day 2019: Panel Discussion & Closing Remarks

Patient Awareness Day 2019: HEALTHY MIND & HAPPY PELVIS
Living Your Best Life With Endo
March 10, 2019 (8am - 5pm)
Einhorn Auditorium, Lenox Hill Hospital, New York City

Hi. So I have a lot of questions regarding egg freezing. I had surgery in July and I have one ovary left. I was actually just in your office on Wednesday seeing Dr. [Noise 00:00:28]. My question is mostly with women with endometriosis or patients like me, how many rounds of egg freezing do you recommend? And also, do you know of any grant programs that actually support women with endometriosis, because they seem to cater to people with cancer or infertility?

So thank you for that question. So it really is a very personal answer, because even with one ovary, a lot of women get pregnant. The question is what's the ovarian reserve in their remaining ovary? Depends on the patient's age, her AMH, how many follicles we see on an ultrasound, and whether or not there is a cyst in that ovary, and whether or not that ovary is accessible. As I mentioned, we usually quote two to three percent. With endometriosis, I will err on the side of lower statistics. So if you've got ten eggs per retrieval, I would encourage you to do the cycles twice or three times in order to have a good number of eggs to increase your chances of a baby and potentially a second baby. Regarding the question regarding the medication, so Livestrong is a company and Walgreens Compassionate Care, those are two companies that help with medication. Medication alone can be a few thousand dollars, so when you come back to the office we'll give you all the application and we'll help you with that.

Thank you.

We got some here.

Where? [inaudible 00:01:52]

Thanks. I also had a question about egg freezing. Is it possible while you're getting, say, surgery for endometriosis to retrieve eggs at the same time and kill two birds with one stone, or is that sort of frowned upon or does that hurt your odds of getting good eggs?

It's a very good question. We get that a lot. So Dr. Seckin does his surgeries here at Lenox Hill, and usually prior to the surgery, you need to actually usually suppress the ovaries rather than stimulate it, because the ovary will be about twice to three times the size. But having said that, if it was an emergency surgery, and the patient happens to go through surgery that's unplanned, we can technically do the retrieval, take the egg, or take the tissue, and freeze it. But that's not a very common and not a very recommended way of doing it.

Another question about egg freezing. Does ovarian stimulation impact the endometriosis growth or the lesions?

Excellent talk. So I routinely give patient ... there is three L's that I call it. Letrozole, which is a medication that lowers the estrogen level, so the patient doesn't have the symptoms that are involved with higher estrogen level. I avoid estrogen at all cost. Two is Lupron. That's the same medication that you've been prescribed most likely by your doctor to lower the threshold for pain, as we've discussed in some of the lectures today. And that's used to trigger ovulation in the last step. And I use low dose medication in order not to hyper-stimulate the patient, so she's comfortable throughout the process. If a patient usually freezes eggs and it's about one or two days of discomfort towards the end, with endometriosis you'll see it much earlier because the threshold for pain. And as you beautifully outlined, the sensitivity's so high that we need to be aware of it. Those patients we'll be seeing on a daily basis rather than every two or three days, and we'll basic tailor the treatment to them.

And keep in mind just for clarification, the Lupron dosing that he's using is really a very small dose in comparison to a three-month shot that suppresses your whole system and is impossible to deal with. It's a very tiny dose. It's a daily tiny dose for a week. It's not the same.

And it's out of your system within 48 hours, so that's a very good point, Carly.

I have a couple questions about the Chinese herbal medicine. My first question is what kind of diet changes are recommended by Chinese medicine? Are they similar to the generally reducing inflammation diet that we're constantly hearing about? And you mentioned at the end that tumeric is not good for everybody. How do you know if it works with your body or not?

Okay. So let's take those as two questions. In terms of dietary, certainly most important would be avoiding inflammatory foods that are just a given, right? So essentially you have things like extremely refined wheat and extremely refined sugars. Both are inflammatory. But in general, I think only in more sensitive people are chemicals ... no offense ... chemicals in general, inflammatory. So in a very simple way, I think on my slide there was the idea of organic whole foods, strictly avoid chemicals. And again, no offense. I feel very offensive saying that, because chemicals are a big part of what some people do.

[inaudible 00:05:25]

Yeah. The turmeric. Turmeric is an herb that is called [Jong Huang 00:05:32] or yellow ginger, being used for regulating menstruation in Chinese medicine for at least 2500 years. So we have 2500 years of recorded history using it for gynecological conditions, and explaining who it's for, when and why and not, is not something I can do at this time. Thank you.

I have a question about the drug ORILISSA. It's new on the market. For Dr. Seckin, his opinion on it, or any of the experts.

[inaudible 00:06:07]

Okay. I would love your opinion, Dr. Seckin.

Well, look, we tried to explain through this conference that the surgeons know very well the distinction between the management and the treatment. Treatment is clear. You cannot get rid of already formed lesions by giving aspirin or any other thing. Nothing. It's there. You cannot eliminate that. All right? Number one. Endometriosis is not like cancer also. In cancer, they divide very fast. You can interrupt their DNA. So in this case, the management issues and those birth control pills, you name it, ORILISSA, Lupron, they do manage. What do they do? They diminish the oxygen and they stop the uterine bleeding. They stop ovulation. Those symptoms go away. However, that doesn't mean the lesions go away. So our position, the foundation position, is very clear. ORILISSA is a different version of what we know as Lupron in a mildest format and ingestion is actually very easy. It's like a little pill, bam, bam, and side effect is claim to be less. It's the jury will be out.

If there is anything that we don't know, I don't know. But I'm not on board with ORILISSA. That's very clear. And the foundation is not either. And one of the things that we don't like, we kind of thought there would be incredible awareness starting with this million dollar of advertisement. We are for awareness. However, awareness should not be deceitful, misleading the public with respect to they believe it's going to be treatment. It is really not. The real treatment is excision. And the champion of excision is my predecessor, Dr. Redwine. I'm so honored to have him here. Truthfully, he's the wittiest, sharpest guy that really puts words in its place, the right time in the right way. He explained this years ago. They defined this meticulously. To every pixel precision, they defined these lesions. However, still we miss. We are so ... nobody's perfect. Nobody's best. Nobody's best surgeon either. And they're wonderful surgeon in California. They're our friends. They're good website.

And there's also, we don't really recommend in the foundation go to this surgeon, go to that surgeon. We don't want to be responsible from what people do. Because endo surgery is a risky surgery. You can't have anybody do it, because there's high ... any endo surgery is four to five times riskier than regular appendectomy or gallbladder surgery, because it covers multiple organs. There's little itty bitty lots of things are happening. And no doctor wants to risk it. But however, the patient should be alert. You have to ask the doctor the pictures and the video. If you see resistance, just, there's another one. It's out there. There are people who does good work out there. The video of the documentation of the surgery should not be limited to doctor's dictation with couple words on one page. The surgery demands much more detailed documentation. We can tell by just looking pictures and video what has been done and how it is done.

The burning, lasering around, robots are really not ... they are fancy, sexy way of doing things, but they are not the way to do things. Endo surgery requires truly a feedback from the fibrotic tissue as you remove. And if you lack that, you may not get the whole thing out. Anyways, that's almost ... we're going to be wrapping up. Any more questions? Dr. Redwine, do you want to ... you said everything about ORILISSA. Do you want to say anything, please?

Well, it's clear from the publication in the New England Journal of Medicine from June of 2017 that most women who take ORILISSA will not respond to it in terms of the two symptoms that it's designed to treat, dysmenorrhea and non-menstrual pelvic pain. They collected data on five symptoms and signs, but on the bar charts, a company that ... that paper, they only had two of those. Because the other three, two of them did not respond or got worse during ORILISSA, and the other one, dyspareunia, painful sex, responded a little bit at the higher dose, but they didn't want to put that on the bar charts because it wouldn't look ... it would be even lower than the response of dysmenorrhea, which is partly a uterine symptom, not an endometriosis symptom, and it didn't respond as well as non-menstrual pelvic pain.

The intent to treat analysis chart in that publication showed that about 48 percent would respond to dysmenorrhea, and response was measured by ... one parameter was if you didn't have to increase your pain medicine during ORILISSA, that was a response. So in other words ... yeah, I know. I guess you had to have been there to know why they said that no decrease in pain medicine is a response. The reason they did was if ... they had another pain instrument of some type, you know, questionnaire, where even if they continue to use the same amount of pain medicine, if on this other pain scale they were even a little bit better, that was a response. So I thought the article was deceptive. Collecting information but not reporting it because it's not favorable to your product is not the way science should operate. So they proved that most women will not respond with their own data. But that chart was hidden in the supplemental appendix. It wasn't in the main part of the study. So it doesn't work. It's expensive.

There's one thing that we ... there's 1600 patients they worked. Out of 45 clinics, and some of them out of United States, we don't know how many came from ... I asked for these numbers, and there was no supplementation of those numbers. Which patient has worked through which clinic, and about their surgical treatments, or diagnoses, what was done. It was-

And the ORILISSA study also allowed patients up to the age of 49. Lupron was studied in patients 18 to 35. What happens after age 40 with estrogen production from the ovary? It goes down. That can make endometriosis pain better just because of the patient's age and ORILISSA is claiming the benefit of reduction of estrogen production by the ovaries, it's claiming that for itself perhaps. And getting back to the number. These were huge studies. Hundreds and hundreds of patients. What happens is one of the strategies that drug companies use when they realize that their drug may not be very effective and there may be only small arithmetic differences between treatment groups, one strategy they use is what's called overpowering. They recruit hundreds of patients so that small arithmetic differences can be shown to be statistically significant, even though they may not be clinically significant. So this is something that is seen in the drug company literature with ORILISSA and some cancer drugs, and probably other drugs that I'm not aware of.

So there are many, in my opinion, many ethical and scientific problems with that publication. Bottom line is most women will not respond. Less than half will respond with dysmenorrhea and only about 12 percent respond with non-menstrual pelvic pain. And response includes people who continue to take the same amount of pain medicine, because they continue to hurt.

So great. Bloggers are recording. It's on the record. That's where we are. So let it stay that way. But one thing I like to clarify. The good scientists that did these studies did it to the best interest of the patient. I believe them. Many of them are friends. They were here. It's the collaboration of those data and the way the company publishes and goes to FDA. FDA is the people who are approving it. So we cannot blame the scientists on this. Data has been reanalyzed by the company. So there's a lot of things that we are not part of and we don't know. So we want to stay on the right side in the history of when it is written, three years later, we want to stay ... we are not standing with the drug company. That does not bring excision surgery to the center of the treatment agenda. That clearly says gold treatment. Women should have their things removed.

Lesions have to be removed, and we accept birth control pill to stop the, maybe manipulate, stop the periods or ovulation, so their pain is less. But as long as the lesions are there, that's not the right way.

And I just want to reemphasize what Tamara said. It is the responsibility of the drug company to process the data. It was not the collaborating physicians' intent to be deceptive. It is the drug company that is deceptive. So if you're a physician, be careful if you participate in a drug study, because the drug company will do what it wants with the data. Similar thing happened with Lupron. They massaged the data, and for instance, they found that with Lupron, by one year after stopping Lupron, most patients had not regained baseline ovarian function. We never saw that in the medical literature. That was in the raw data that was buried in the bowels of TAP Pharmaceuticals, and it never got out. The ORILISSA paper that came out in June of 2017, 36 percent of the authors were employees or ex-employees of AbbVie who held stock or stock options. So there you go.

I guess we're about to wrap up at the end of this. I just, obviously, want to thank our great panel for staying this late. It's 5:30. We had three days of conference. Unbelievable. I can't believe there's still more than almost 70 people around here. Thank you for your patience. We have small surprise for you. It's like a little candy that expresses love to you. There will be very fine two women who wants to sing for you. They're just coming out. They're probably hiding behind the curtains. As you talk, during the closing, it's going to be very short. They want to sing you a couple songs as you leave the place. I really thank you so much for staying. If there is any question, I can follow up. If there's any issue with whoever is here, if there's any problem with your insurance, with other things that we can help, there are ways of helping people who have not the right insurance.

There's way of we can help you to plea, and we can write letters for you. I promise we do everything. Just tell me that you have been in this conference and heard me saying this. In my practice, and there are other physician also that wants to do the same thing. And I'm hoping one day foundation will have a way of dealing with this. We're working on some coding issues. We have representation in Washington. We are truly working on certain things. I do not know how much we can success, but I think that in individual practices, we can help people still. I don't want to turn any patient, if they come and sit and talk to me, and I don't want to deny any care to ... and there are people in this crowd that's gone through those kind of processes. Okay.