The Promise of Drug Therapy to Reverse and Prevent Lymphedema - LE&RN Symposium

[@whammond511]

I’m a Primary Lower Limb LE person. I have been treated sporadically since initial diagnosis in 1999. Consistent training and treatment is practically nonexistent within the Medical Community for Primary Lower Limb LE in my experience. It is a continual struggle w/both Insurance & w/Competent Treatment Providers. The efforts at Certification of LE Providers is no where near to being standardized and normed as of yet. This is all in preparation of saying the possibility of a Drug Interventional Therapy is an extremely exciting opportunity. I do not have Arm LE or I would move to the Stanford Univ. vicinity just to be a part of this study. I will anxiously await the results of this study and the general availability of this Dtug. Thank you Dr. Rockson and all of your colleagues and study patients for your work and participation. I and thousands of LE Patients across the country will be eternally grateful to you!!

[@Bravosmom1]

Dr Rockson is my doctor and he is brilliant!

[@beverlymartin-mfume2921]

Are there any doctors in Ohio

[@thisthatandthose]

​@@beverlymartin-mfume2921 my name is Beverly in Ohio also. What's the odds?

[@juliedurden9479]

You are fortunate indeed! I wonder if there is anyone like him in the Atlanta area.

[@neskamiagi7645]

This is amazing ! I'm so glad your were able to get the funding needed ...I have suffered for over 10 years after breast cancer surgery and basically no one has been able to help me ...this gives me hope that I may one day have a "normal " functioning arm with no pain

[@jacquelinemay]

Hi, have you been able to see and certified lymphedema therapist and occupational therapist? They can definitely help you

[@FentonFromTrenton320]

Does this research trial include primary lymphedema such as Milroy disease?

[@katenoke1571]

I feel the same way. Lymphadema in my left arm 12 years after mastectomy and axillary node dissection. It's so painful and debilitating

[@annababin6446]

Thank you DrGor enlightening the world about this terrible condition and bringing us hope!

[@helenhouliston5797]

I have primary lymphedema. It was only within the last few years that my GP gave me this diagnosis. I have swelling not just in lower legs but also around my abdomen, stomach face and upper arms. the event of menopause has made it worse. The country I come from has some lymphatic clinics but they are inconsistent-it really depends on where you live as to the quality of treatment and knowledge of this condition . Pumps are unheard of here (pretty much) -although I suspect some private practitioners provide more than the public health service does. Indeed the public hospital service in the city I lived in for 40 years has a lymphedema clinic but solely for cancer patients. Not many people understand it in my country. I have endured, fat shaming, insults re my size, not being able to buy shoes that fit me and look nice .Sometimes I really don't wish to leave the house and i get my husband to do the grocery shopping because I feel so awful. I now have hypertension_???? due to weight gain?? Maybe.. My concerns have often been dismissed by health professionals as a silly vain woman who cannot accept the aging process. Personally I feel this is just B.S. and a cop out. Dr's cannot admit they don't know everything!! Instead of just saying something like: " I really don't know or understand your condition but I will research it". no no no !! Too proud to admit to a patient that I do not know anything regarding Lymphedema. I am excited and hopeful to hear what you have to say about the responses to the clinical trials and the reversal of the degree of skin swelling in the study subjects. I have a family history of hypertension and strokes so....... I'm cautious. I am hoping that you come up with a solution that has much lower risks to patients. It's all very fascinating and I have subscribed to LEARN through KZbin. Thankyou for all your research and effort to. eradicate this distressing disease.

[@calgram]

I have read so many horror stories of patients whose symptoms aren't recognized and/or who haven't been supported with proper care by their medical team. I've experienced failed recognition by my entire medical team as well. If I hadn't been calmly persistent, and spent hours of my own time researching my symptoms so I could speak intelligently and be firmly persistent with my oncologist, doctor of radiation therapy, and G.P. about my condition and observable symptoms, I don't know where I'd be today. It was a slow process getting care, but the delay of months was certainly better than the years others have experienced. Still, I constantly ask myself if I'd gotten immediate care how much better would my condition be today? My oncologist decided to treat me with antibiotics for two months!! Only then did I finally get a referral to lymphedema therapy. Having so few certified lymphedema therapists is also a serious problem. I am 50 minutes drive away from mine, and thank goodness I have the financial and physical ability to drive, but that could be an insurmountable impediment to getting treatment for some patients' circumstances. More widespread pool of certified therapists are needed. This condition desperately needs RECOGNITION. The medical profession, especially those practitioners in cancer treatment should be required to have adequate training, and there should be clear protocols including ongoing/follow-up care in lymphedema treatment mandated to medical practitioners. I hope this new drug therapy and the team working on it gets the support needed to complete testing and get approval to treat the patients who need it.

[@justinkkm]

Hi my mom is suffering with lymphedema in last 20 years now a days to she is not able to walk please advise some medicines

[@SAGEAGNES-ju6ur]

MAY GOD BLESS ALL YOUR CAPABILITIES!!!!

[@lorrainenicoletti6232]

You give us HOPE. Thank you for POSITIVE OUTLOOK POSITIVE ATTITUDE.

[@marciacapell1541]

Gosh thats scary. Mine is from BRCA and lymph node removal. Its not very fun lol. A cure would be amazing. 🤩🥰🤗 Its been 2 years since my treatments, but the agonizing side affects are here to stay. Its the never ending story. Its very painful inflamation and swelling. Iam 66 yrs old, so my skin isnt tolerating it very well. Iam very excited about the posibility of a cure! 👍⭐️⭐️⭐️⭐️⭐️

[@hellonewman51]

I have had lymphedema for 19 years. I used to get excited about clinical trials but not any more. I'm in my 70's so I don't feel like I'll see anything that will give my remaining life any relief from this problem.

[@sandyw6060]

If you have any coming to Boston Massachusetts

[@jozette-pierce]

Please Dr. Rockson, I hope you get the new drug approved as soon as possible, even if it works at 75%, instead of 100 %. Any amount of improvement will help. Thanks for all you do for us long suffering lymphedema patients.❤

[@barbarapakalania6712]

Thank you for all your efforts at last

[@rayjones7621]

When will this drug be available for the public?

[@nishru1000]

God Speed doctor!

[@FierceGamersChannel]

Hello I am wondering about the trials and when you are deciding on patients? Also what would be the criteria? Secondary only or generalized in all people? I have just started to accept that I have upper generalized Lymphedema?

[@juanitagarcia-vicente4720]

I have been researching about this condition since I noticed the word “edema” in my doctor’s evaluation of my medical record. I am 72 years old woman. He didn’t discuss the issue too much with me, he just decided to give mea very mild water pill but, after three months, the pill hasn’t improve my condition. My mother died without realizing she suffered this condition but I am determined to continue researching to find a method to bring a cure because now I understand some of the things that can help me, and others. I have HBP, lymphatic system related conditions and, so far I have read about e exercises like bouncing and walking. I am taking fat burning enzimes, a pill for edema and swell in my legs, eat fruits and vegetables. I will love to participate in any test trials to help other women that have been suffering from this conditions to prevent the condition my mother didn’t had a chance to overcome before her dead. Thank you

[@angelacb4748]

0

[@mfrmll3786]

I’m brand new!! Week 1!!! I have to find IMMEDIATE HELP NOW FROM REAL MD WHEN KNOWS!!’

[@tangij7011]

Bless you bless you bless you

[@loribee26]

I'm curious whether the timeline for this drug will be shorter as it is a possible drug treatment for long Covid. Seems like any Covid related drug/treatment is fast tracked.

[@janecafarella4947]

This is very exciting, but I note that the Mayo clinic lists edema as a contraindication for ketoprofen. I guess this depends on the dosage?

[@TLC26]

Manchester CT for trial please!!

[@wendyconnew6458]

Will you also trial for breast cancer treatment caused by radiotherapy and surgery.

[@sandraapap7408]

Do fitted garments really help?

[@TLC26]

What are the meds for this?

[@neskamiagi7645]

Just wanting to know how this trial has gone ? 🤞 Some hope ❤️

[@kalamitejane]

I just found out I have lymphedema from my breast cancer and radiation. I was told about a chance of it happening. But not really what might happen. It was never really explained to me. That makes me angry 😡

[@cghrios783]

I’m very sorry about your diagnosis. Was it a different way that would have prevented this from happening. Thanks

[@sandyw6060]

I love this. But my leg from melanoma but before I had cancer in leg I had two knees replacement and two year later I had this cancer in leg I had pumps. Wrappings and still a problem I did. Water aerobic exercise and bike

[@gabriellejacobsen6203]

what do you think of Infra red and then cold plunging......or even using a Chi machine then inversion table??

[@ruthgarrett277]

What are the results of this study? If not finished yet, when can we expect results???

[@letthatbethereasonsutton7781]

This is wonderful I can’t hardly walk with this please hurry and get this drug 😳

[@TLC26]

My brother has this and also struggles to walk.😢

[@wendyb7008]

Very interested in this study...

[@kangarookids7497]

Thank you for offering us hope. Lymphedema is terrible.

[@jamessekar9481]

Dear Doctor, In India, chennai From Pharm products company Having the medicine for actue and chronic inflammation edema and also for lympedema, Tablet LYMPEDIM 200mg 💼, also , this tablet recognized by most of the Doctors, And this will help ful to deserve patients

[@educationiskeytoallthings6976]

How do you get your doctor to do anything about your lymphedema?

[@educationiskeytoallthings6976]

Two doctors agree I have it but did nothing to treat it. My brother is a nurse and when I showed him my legs he taught me how to wrap and treat the sores on my legs. Thank god for him but I was so embarrassed about my legs that it took a long time before I showed family since doctors acted as if it wasn’t anything

[@jacquelinemay]

Ask for a referral to a certified lymphedema therapist

[@educationiskeytoallthings6976]

@@jacquelinemay insurance didn’t cover them

[@jacquelinemay]

@@educationiskeytoallthings6976 which is so frustrating I'm sorry. If you're able, some places will do cash based, at least for 1 appt to get you on a home program. Good luck to you.

[@Deborahtunes]

@@jacquelinemay Actually I had to get a referral for a vascular surgeon to be diagnosed...

[@theresadurham3777]

Since it happed a year ago, what are the results?

[@cghrios783]

Is this a therapy that will be available soon?

[@vanessafrancis7711]

I such you were in Houston

[@rayjones7621]

Listening to the Dr. he said 3yrs before the drug can be available to the public.

[@wandaherring7526]

Sounds wonderful.

[@letthatbethereasonsutton7781]

I have leg lymphadema. I was a bus 🚌 operator for many years I was told I came down with it because I drive commercial

[@juliamcguire4465]

I have lymphedema in my legs, I take methotrexate for my RA as well as the NSAID, Nabumetone. Could this be the cause of my lymphedema?

[@granadadooley9973]

How do I enroll? Non- cancer related. Lymph in right leg. Hard red purple lower leg.

[@Axer01250]

This seems to be very similar to Ubenimex (Bestatin). (Ubenimex is a safe drug that has been approved and used in Japan as a chemotherapy adjuvant for over 35 years.) The animal trials are exactly the same and the drugs targets were as well. Unfortunately, human clinical trials were conducted by Eiger BioPharmaceuticals, of which 46 lymphedema patients treated with either 150 mg of ubenimex three times a day for 24 weeks, or placebo pills. Their conclusions showed to “demonstrate no improvement of ubenimex over placebo in the primary endpoint of skin thickness and secondary endpoints of limb volume and bioimpedance” this was concluded 4 years ago. Therefore Eiger BioPharmaceuticals pulled the plug on any future funding

[@Axer01250]

N.m. it isn't just similar, it is the same exact study. The Ultra trial. Hopefully, the acebilustat trial will prove to be fruitful. However, the estimated completion date of the study isn't until Aug 31, 2025.

[@dianegiangeruso2783]

do I need to live in your area to be in trail

[@wandaherring7526]

Very interesting.

[@dianegiangeruso2783]

I have lymphedema in left arm . I had breast cancer in left arm for 10 year. I there any drug i can use now?

[@lauras.2096]

I also have it on my left arm. I want to be in this trial...

[@carespagpropietas4953]

i used diestive enzymes and it helped a lot. enzyme defense pro

[@mercuryrising2424]

What are the side effects of this drug?

[@AngelRHart]

I am extremely interested in being in this clinical trial. Please contact me about it. Thanks in advance. Watching this video gives me hope.

[@lauras.2096]

I'm also interested in participating in the trial. I have post cancer arm lymphadema.

[@gabriellejacobsen6203]

@@lauras.2096 please id be a part

[@dianegiangeruso2783]

What kind of doctor should i go to for the lymphedema

[@Deborahtunes]

To be diagnosed, first you have to go to a vascular surgeon...

[@justinkkm]

Sir my mom Is suffering from lymphedema in the last 20 year's. No she have top much pain nd she is not able to walk...can you please help her 🙏 😢

[@DrGarri]

Your plea broke my heart. I suffer lymphedema on both my legs and my doctor in Germany helped me and found a solution, my swelling diminished almost to nothing and now I can wear the shoes I used to wear 10 years ago, my inflammation is minimal or non existant most of the time. How could I contact you directly, or you me without placing our private info here?

[@MsRedbloodedamerican]

@@DrGarri what treatment do recommend?

[@shreya576]

@@DrGarri heloo can u plz tell about ur recovery from lymphadema as i really need it plzzz do let me know

[@gabriellejacobsen6203]

@@DrGarri Yes please i have it in mt leg

[@DrGarri]

How can I get in touch with people who are asking me how I solved my problem without giving my personal contact details here? I wrote o Lisa Martin because she has a website listed here in KZbin, but I don't know how to contact the others. If someone knows I would be glad to contact them and give them the information I got from my doctor in Germany that solved my problem, I can even give you pictures of the Before and After, the change is incredible, and it took less than 1 week! No medicines or special treatments, so you do not to pay anybody to solve the problem!

[@gandiezereckley6702]

I live in the Bahamas my name is Gandieze Reckley. Can I be considered for the trial please. If you reach out I can give my number. I had Stage 4 Breast Cancer. And I have had Lymphedema for 13 years. Secondary.

[@kaygrott3809]

Can those of us with Abdominal lymphedema benefit from sitting in a FAR INFRARED Sauna?

[@braveheart4740]

Lovely... more drugs. With all due respect, the more we rely on drugs as a band-aid therapy, the less we get to the root of what's causing the problem. In most cases that is diet and lifestyle. Not saying it's all bad because there are situations where they truly are needed. However, doctors are not trained in understanding the causes of disease. They're taught under big pharma which of course, makes their $$ every time a drug is prescribed. Just look at the number of commercials advertising a drug.

[@DrGarri]

Dis you hear that the drug they are trying may fix the problem instead of being a daily dosage of pills? Did you hear that part? Did you? I would like to see your webminar about this problem that affects millions, I'm sure your iPhone-toilet research has come to wonderful solutions!

[@zmerka1]

GO to HELL. We're suffering here. I'm a nutrition expert with education in biochemistry, nutrition sicence and botanical medicine. Lymphawhole does not care. DRUGS, POISON, DEATH, I'll take anything rather than live with LymphaFK

[@Deborahtunes]

I can understand your cynical view of drug use. But for those of us who suffer from lymphedema, a possible cure, sounds wonderful. Wraps and massage are such a time consuming process, with little results. And some of us aren't able to do it anyway...

[@azsunburns]

Sounds dangerous and stupid. Just like so many other drugs on the market.