A pill for lymphedema? Talking ubenimex’s potential with Dr. Quan of Eiger BioPharmaceuticals

How exciting would it be if we could just take a pill to get rid of our Lymphedema… great research ..thanks Alexa for keeping us up to date

The Lymphie Life

Living with lymphedema can be a real pill — but what if it could be treated with one?

Recent studies indicate it’s possible, and may even be a reality sooner than we think thanks to clinical trials of a drug called ubenimex.

Last summer I wrote about the ubenimex trials, which at the time of writing had just kicked off by dosing their first patient. The news generated a huge response from the lymphedema community — one of hope, excitement, and lots of curiosity — so I’m back with an update!

Photo courtesy Dr. Quan.

I recently had the incredible opportunity to speak with Dr. Joanne Quan, Chief Medical Officer at Eiger BioPharmaceuticals, a biopharmaceutical company focused on the research, development, and commercialization of therapies for orphan diseases; they are also sponsoring the ubenimex clinical trial.

Dr. Quan and I talked about the ubenimex trial, the Stanford…

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Four year on….

imageToday is world Lymphedema day….March 6th… four years ago I started this blog to write about my Lymph node transfer surgery, as I could find nothing from a patients point of view. Four years later there are Facebook groups, websites and people on Instagram sharing there stories of surgery to help lymphedema. It is no longer seen as experimental and I believe there are improvements in results all the time. Lately some surgeons are using various combination of Lymph node transfer, (LNT) lymphatic liposuction, Suction assisted protein lipectomy (SAPL) and Lymphatic vascular anastomosis (LVA)… we are still waiting to see long-term results of this combination but it is exciting news.

https://stanfordhealthcare.org/medical-conditions/blood-heart-circulation/lymphedema/treatments/surgical-treatments.html

http://www.cancercenter.com/treatments/lymphedema-surgical-options/

https://lymphedemasurgeon.com/suction-assisted-protein-lipectomy-sapl

I am still waiting for someone to be able to throw away their compression after surgery but for sure it helps the limb. In my case no more infections, my leg remains soft and responds very well to compression plus I have days with no compression and it stays ok… Due to other health issues I was unable to have more surgery plus due to these health issues I am now a paraplegic and use a wheelchair, this is not helpful when you have lymphedema. I feel sure that if I was still able to walk, use a pool and exercise my results from surgery would be even better. https://lifeinawheelchairblog.wordpress.com/about/

We are also seeing more research into various other treatments for Lymphedema such as medications and artificial lymph vessels. We need as much research as possible so that we can see advances in a cure for Lymphedema. Lets hope that in the next four years we can see this happen…We need a cure for Lymphedema ….

Although I do not post very often on this site anymore it is always monitored and questions answered.. I love to share people’s stories so we may help each other…

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Copyright © 2013-2017 by Helensamia. All rights Reserved.

Feel free to share with others. It can be distributed via social media, reblogged or added to websites. Please do not change the original content and provide appropriate credit by including the author’s name and a link to this blog.
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Update from Cindy..

Just received this update from Cindy who is two years post Lymph node transfer with Dr Graznow …going well but always have to be vigilant for any issues … it is about gauging what works best … however not having to wear compression all the time is great… LNT will continue to improve too ..

“This is long overdue. December 11, 2016 was my 2 year anniversary for the VLNT. I am pleased to report that my leg size continued to stay small and I spent a lot of time out of my garment. I was beginning to hope the Lymphedema was gone. All that changed when I put a pair of socks on to wear with my boots. The socks were crew socks so the elastic was around my calf. While at work I decided to check and see how my leg was handling the elastic. I was horrified to see the swelling (and pitting) right above the sock. I ran home during lunch and put my garment on. Next day it looked good and I continued to not wear my day garment. Overtime, I realized I could feel my calf getting bigger during the day. It was slowly getting larger and heavier. I am back wearing my day garment, using the Jovi at night and receiving MLD twice a week. My leg looks and feels great again. I’m fairly certain I will be able to go without my day garment again. I don’t want to rush it. I waited an entire year post VLNT to experiment with not wearing my garment. Think I will give it a month before I try again. I’m grateful for all those days without my garment. I now realize I can have nothing on my leg that restricts circulation.

Wishing everyone a happy and HEALTHY 2017!!” From Cindy

Please everyone remember that March 6th is world Lymphedema Day

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Copyright © 2013-2017 by Helensamia. All rights Reserved.

Feel free to share with others. It can be distributed via social media, reblogged or added to websites. Please do not change the original content and provide appropriate credit by including the author’s name and a link to this blog.
https://lymphnodetransplant.wordpress.com/ Thanks

Update from Loretta

imageI’m doing well I keep saying I owe you an update but time flies by! I was at my therapist yesterday and she measured me and I am smaller than the last which was in September. Overall much smaller than before the surgery.😊My thigh is “normal ” but where he implanted the nodes in my calf is a little bigger. You would have to look hard at my leg to see the difference.
I stopped wearing a tribute at night and decreased my stocking compression to a class 1 from a 3, BUT I still wear my ready wrap on top of the stocking.
The end of January I am scheduled for my one year MRA and beginning of February a Lymphocintigraphy, excited to see how my babies are performing!! I see my surgeon after the testing.
Hopefully he will tell me to get rid of the wrap and start with a higher compression stocking to make up for the loss of the wrap.
All in all the surgery seems to be working for me and hopefully I continue to see results.
You can share this on your site and if anyone would like to contact me I would be happy to speak to them.

This is a link to her previous post at time of surgery

https://lymphnodetransplant.wordpress.com/2016/03/12/the-unwelcome-guest-part-two/

Even though there are not many new posts this blog is always being monitored and someone can answer questions …love to hear your stories always ..plus I reblog any interesting posts from others on lymphedema…

Copyright © 2013-2016by Helensamia. All rights Reserved.

Feel free to share with others. It can be distributed via social media, reblogged or added to websites. Please do not change the original content and provide appropriate credit by including the author’s name and a link to this blog.
https://lymphnodetransplant.wordpress.com/ Thanks

 

Lymphedema: a Name for 33 year’s worth of questions.

A great post about Primary Lymphedema and its diagnosis and treatment ..thanks Laura for sharing your experience so others may learn from it …

Expressions of Laura Ashley

This month, I began a journey that I never thought I was prepared for. Upon realizing that I was in my 30’s and having never really addressed why my legs always looked puffy or swollen, I thought I’d go to the doctor. I didn’t really know where to start, so I went to the foot doctor. As part of their intake session, they took an xray of my foot. When I met with the doctor, he looked at my foot movement, my walk and gait, and range of motion. But he said my bones were fine. Even my foot, which he said was not a “flat foot” but a type of flatter foot, was fine. But he said he thought I had lymphedema because of the swelling and that he’d refer me to a lymphedema specialist. I left with a prescription for low level compression wear and some online resources…

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Research

imageFirst Patient Dosed in Secondary Lymphedema Study
Andrew Black
Published Online: Monday, Jul 25, 2016
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Eiger BioPharmceuticals dosed the first patient in the Phase 2 Ultra Study of their drug Ubenimex in patients diagnosed with secondary lymphedema. The Ultra study is designed to assess the effectiveness of ubenimex blocking the production of Leukotriene B4 (LTB4).
Ultra Study
The study will evaluate the effects of ubenimex in patients with secondary lymphedema of the lower limb(s) who are optimized on physical therapies. The Ultra Study is a multi-center, randomized, double-blind, placebo-controlled Phase 2 trial assessing 40 patients that will be randomized to receive either 150 mg of ubenimex or placebo three times a day over 24 weeks.

Leukotriene B4 (LTB4) is a naturally-occurring inflammatory substance known to be elevated in both preclinical models of secondary lymphedema as well as human lymphedema disease. Elevated LTB4 causes tissue inflammation and impaired lymphatic function. Targeted pharmacologic inhibition of LTB4 promotes lymphatic repair and reverses lymphedema disease in treated animals.

Ubenimex is an oral, small-molecule inhibitor of leukotriene A4 hydrolase, which regulates the production of leukotriene B4 (LTB4), an inflammatory mediator implicated in PAH. LTB4 is produced from leukocytes in response to inflammatory mediators and is able to induce the adhesion and activation of leukocytes on the endothelium, allowing them to bind to and cross it into the tissue.

Ubenimex is also currently being evaluated in a Phase 2 study for the treatment of Pulmonary Arterial Hypertension (PAH).
Secondary Lymphedema
Secondary lymphedema usually develops as a result of a lymph vessel blockage or interruption that alters the flow of lymph through the lymphatic system and can develop from an infection, malignancy, surgery, scar tissue formation, trauma, radiation, or other cancer treatment Radiation therapy can damage otherwise healthy lymph nodes and vessels, and can cause scarring of the lymphatic vessels which leads to fibrosis and subsequently diminish lymphatic flow.

 

Always excited to see any research into treating and curing Lymphedema …

Thank You

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March is drawing to a close and I would like to take the opportunity to thank everyone for making this the best Lymphedema Awareness month ever. For the first time we had World Lymphedema day, on March 6th, as everyone united to bring awareness to a disease that affects millions but is not well supported or understood.

imageBoth those with Primary and Secondary lymphedema stepped out of their comfort zones to tell their stories. What a variety of personal accounts have been shared across social media. The effect lymphedema has on people’s lives is different for each person. The severity is also different for everyone ranging from one limb to the whole body. Some people get many bouts of cellulitus and infections, others non. In some the swelling is very severe, in others manageable. The one thing that unites all Lymphedema sufferers is the need to care for their limbs 24/7 and the need for better financial, physical and mental support. The burden of care financially should not just fall to the patient, in which case many cannot afford the care that is needed.

imageBy bringing awareness we hope to educate people on the needs of those with Lymphedema. We hope to move governments to introduce legislation to cover more of the costs faced by those with lymphedema. We hope to encourage reasearch into this often misunderstood problem.

Thank you to every single person who  has been involved in building awareness of Lymphedema. The story writers, the bloggers, the Facebook pages and groups, those that shared on social media those that liked and read and talked about Lymphedema. Those who ran workshops and groups. To Kathy Bates for stepping out to be our spokes person. Everyone no matter how big or small has led to March 2016 being the best awareness month ever…

Well done all …

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Feel free to share with others. It can be distributed via social media, reblogged or added to websites. Please do not change the original content and provide appropriate credit by including the author’s name and a link to this blog.
https://lymphnodetransplant.wordpress.com/ Thanks

Lymphedema Lilly brings Hope

This is the best news ever from Dr Marga re Lymph Node Transfer Surgery. At last it is no longer called Experimental and has become excepted surgery for Lymphedema … How exciting … This truly gives HOPE to those with Lymphedema .. This is the post from Lymphedema Lilly and Dr Marga …

This is a link to her FB page .
https://www.facebook.com/The-Dr-Marga-Practice-Group-275005705498/
imageVASCULARIZED LYMPH NODE TRANSFER (VLNTx) Means HOPE!
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One of the most disheartening aspects of lymphedema is that it is commonly described as a deforming, progressive and chronic medical condition for which there is NO CURE. Lymphedema sufferers often relate reaching out to health care providers for treatment and meet only with a lack of knowledge of this disorder on the part of nurses, physicians and both occupational and physical therapists. This limited access to quality care or assistance results in chronic anxiety and depression for many as it robs patients of any kind of hope to combat the long-term complications and associated disabilities of this disorder.
Lymphedema Lilly was introduced by Dr. Marga F. Massey to help disseminate the most sophisticated treatment options available for the treatment of lymphedema currently available in the United States. This year is a hallmark as microsurgical lymphatic reconstruction has been accepted by the surgical community as a reproducible, effective and safe means to bring relief to patients suffering upper and lower extremity lymphedema. Major academic institutions have added lymphatic reconstruction to their educational missions for residents and fellows as well as in specialized post-graduate educational symposiums. The American Society of Plastic Surgeons now offers lymphatic reconstruction CME Instructional Courses for experienced Plastic Surgeons to learn more of these reconstructive procedures. The battles with insurance companies for coverage are less frequent. In short, patients now have HOPE as access to health care options is easier and more accepted as the standard of care by the medical community.
VLNTx is the most sophisticated form of microsurgical lymphatic reconstruction available today in the United States. Diseased areas of a patient’s lymphatic system are reconstructed using healthy lymphatic tissue including lymph nodes transferred from a remote location elsewhere in the body. Arterial and Venous blood vessels are reconnected using the intra-operative microscope as a means to ensure survival of the transferred lymph nodes in the zone of prior injury, hence the title “Vacularized”. All of Dr. Marga’s patients are enrolled in the oldest American prospective clinical trial addressing VLNTx for treatment of extremity lymphedema to ensure validation of the technique and to track long-term complications. Dr. Marga has more than 10 years of clinical experience in the field and is a Certified Lymphedema Therapist offering care for patients in 5 Centers throughout the US.
Lymphedema Lilly Trivia: It’s rumored that Lymphedema Lilly’s eyes and smile were designed with an attempt to artistically emulate Dr. Marga’s loving approach to being Happy while living with Lymphedema.
Till Next Time, Be Health and Happy!” Dr Marga Massey

Website http://drmarga.com

Thank you to Dr Marga and all the other surgeons who have worked so hard to have this surgery excepted. Three years ago I was the first person in Australia to have this surgery for my lymphedema leg. I started this blog as there was  so little information and non at all from patients. In the last three years I have watched as things have changed, as surgery has improved, as insurance companies do not call it experimental….. All those who have Lymphedema now can have HOPE … One day there maybe a total cure… One thing is certain we are moving towards the light at the end if a very dark tunnel … Helen

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Feel free to share with others. It can be distributed via social media, reblogged or added to websites. Please do not change the original content and provide appropriate credit by including the author’s name and a link to this blog.
https://lymphnodetransplant.wordpress.com/ Thanks

 

 

The unwelcome guest Part two..

imageIn Part Two Loretta tells of her time in Hospital for a Lymph Node Transfer. It did not all run smoothly but she is home and healing well now.

The unwelcome guest Part two

“In 2013 my cancer surgeon encouraged me to speak to a Plastic surgeon that was operating on people with lymphedema. I went for a consult and he said he would take lymph nodes from my neck and put them in to my ankle. I asked him how do I know I won’t get lymphedema in my neck and he said there was a chance!!! I was not happy with this answer and never went back!!! Then in June my surgeon told me about a Dr. at Sloane Kettering who was doing something new with lymphedema patients. I went to see Dr Dayan in July, he told me about the testing he did called Reverse lymph Node Mapping using lymphoscintigraphy. This new test could prevent possible Lymphedema at the donor site, by choosing nodes in areas where they are plentiful. It is also used to check where nodes need to be transferred, to improve the lymphatics. Dr. Dayan is probably the nicest individual I have ever met, he takes the time to speak with you and your family and answer all your questions. I actually went to see him twice before I made my decision. I also asked to speak to a patient that he operated on to see what they had to say. I finally I had the surgery on January 26th 2016 so I am just now recovering.

On the morning of the surgery I had lymphoscintigraphy done on my arms to choose the best nodes to use for the donor site. Dr. Dayan decided to take lymph nodes located under my right arm which were draining into my trunk. I just want to add the lymphoscintigraphy is not something to be afraid of as I had it done three times, twice in my hands and another in my hands and feet. I opted for the lidocaine injections first and all you feel is a pinch then the dye is injected and you do not feel it.

After the surgery Dr Dayan was happy with how it had gone but he told me in order to get the donor nodes they had to cut a nerve and then he sewed it together.The day after surgery the PT tried to get me out of bed but my BP dropped 50 points and I felt so sick. So they asked me to sit on the side of the bed while they remade it. Then the PN emptied my drains. She pulled on the tubing, as they all did, but very close to the donor site, instantly I was in agonising pain. My medical team was there and they tried various pain medications, thank goodness after about two hours the pain subsided. My doctor came and started me on a different medication, for nerve pain, that kept the pain controlled. He did say it could take a couple of months before it totally settled. I also got an infection at the site of the transferred nodes in my calf, so I had to start IV antibiotics. This was a worry incase this damaged the donated nodes. It took a few days to be able to get out of bed due to my blood pressure dropping but gradually I was able to manage. Those first days I felt disappointed in my self for not managing better but I forgot that this is major surgery and it effects everyone differently. I did not want to go home till I could walk and manage ok.

When I had my ovarian cancer surgery I got out of recovery at 2 am the surgeon asked my husband did he think I wanted to go home? How crazy is that they sent me home 10am that morning and later that day I was back in the ER. So this time I was in no hurry to go home.
In the US the insurance companies want you out right away, that is why I was surprised they were even paying for my surgery. Before I could go home the nurse taught me How to give myself an injection of a blood thinner, I think it is lavolax but not sure as was too nervous following instructions to see the name!!! I had to give myself injections for 30 days post surgery!!

As I started to feel better I sat on the edge of the bed good leg dangling lymph leg tucked on bed to get acclimatised to getting up. The nurse and my husband got me to stand up and then sit in a chair. I still got nauseous so they gave me Zofran to take away the nausea. About 20 minutes later the PT came and I got up and I walked/hopped about 10 feet to the hall, sat for a few minutes then walked/hopped back to my chair where I sat for 4 1/2 hours. I felt proud, it felt so good to be out of bed. My doctor came and told me I would not be going home till after the weekend but the next day they will take out the foley catheter I was happy about this but a little scared that I would have to get up and leave myself enough time to get to bathroom…… Hopefully sharing my progress report will help others.

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Eventually I got home and felt so happy to be there, I love it. I still had both drains and they would be taken out on Wednesday 2/10. I had the option of going into the Dr earlier to take out leg drain but arm drain was still producing too much? It was not worth it for me to go into NYC for one drain. I live in NJ about a 45 minute ride but I could not get to the car as my garage is down fifteen stairs and four front steps. When I came home from the hospital my husband parked in the driveway and our local rescue squad sent 2 EMT’s . They put me in a chair and carried me up and into my bedroom. So if I went into the city for one drain I would have to get the rescue squad to come twice, so it was best to wait and get two done together.

I am now walking on my leg but I am not 100% yet, still some pain and a lot of stiffness in the calf which is the site of the transferred nodes. I stopped bandaging because too much compression is not my friend it actually causes more swelling. My foot was so swollen but since I stopped bandaging it has gone back to normal. I still wear toe caps on it and have started to wear my ready wrap again with some cotton padding over the transplant site. This has only been for 2 days, I checked with doctor and therapist first and showed the difference in my foot and the improvement since I stopped bandaging. I also stopped with any compression at night. I kept waking up in pain because my foot and ankle was hurting so much and would have to take off whatever I was using for compression, I even tried my Tribute and that was too much as well. So now I happily sleep without anything but elevated my legs ( I have a bed that raises the foot and head) and have seen the swelling in my calf getting better as well as my thigh. My doctor tells me to be patient it could take up to a year or more to see any results. So time will tell, hopefully when I am at my optimum size I will be fitted with a custom stocking:)

I am happy for anyone to ask me questions and I have told Helen to share my email with people. Just send your questions as a comment and I will answer.” Loretta

Thanks once again Loretta for sharing your progress. We can never forget that this is major surgery and sometimes things do not run smoothly as Loretta found. However all those problems are now resolved and it is time to heal and have much patience…

Any information included in this blog does not replace the advice of your Lymphedema Doctor or therapist….  Helen

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Feel free to share with others. It can be distributed via social media, reblogged or added to websites. Please do not change the original content and provide appropriate credit by including the author’s name and a link to this blog.
https://lymphnodetransplant.wordpress.com/ Thanks

Exercise to help your lymphatics..

From time to time I am asked by people if they can write an article for this blog, some I refuse and others I accept. This is an article about Rebounding as a way to help the lymphatics. I was once told that 15 minutes a day jumping on a mini trampoline would be great for my lymphedema. I gave it a go and was amazed that it was hard work!!  But it felt good … I am aware that some of you would not be able to do this exercise but for others it is something different to do at home. I think you can also get mini trampolines with a handle for support.

https://www.rebounderzone.com/blogs/rz-blog/112881093-10-ways-rebounding-improves-your-lymphatic-health

 

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Rebounding & your Lymph System … Health Benefits Galore!

As you may know, your lymph system plays a vital role in your body’s ability to fight disease and self-maintenance. But, unlike your circulatory system, there is no “motor” to get your lymph system revved up and your lymph moving. There are various self-care methods you can use to stimulate your lymph, including manual lymph drainage, skincare, and exercise. Exercise is extremely important, as not only does it benefit your overall health, but can help relieve some of they symptoms of lymphedema and other lymphatic disorders. If you are living with lymphedema, make your exercise time count with efficient exercises that impact your lymph system. Lymph in your body flows vertically, meaning traditional exercises such as running won’t be as effective as you would like with getting your lymph moving. Focus on vertically oriented activities that use the force of gravity, such as jumping jacks and rebounding. Rebounding is just a fancy term for bouncing on a trampoline, and it can have tremendous benefits including increasing your lymph flow and improving your overall health. In this infographic from Rebounder Zone, you can see the wide-ranging positive impact rebounding can create for your body. Don’t let a sluggish lymph system prevent you from living the active life you want and enjoying the health you deserve!
Leonard J. Parker III
Business Development Manager
Rebounder Zone
http://www.rebounderzone.com
832-356-8251