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

Gallery

8 months post-op

Thanks for sharing your progress with us

The Lymphosaurus Rex

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Hi everyone,

It’s been 2 months since my last blog and lots has happened in between now and then. These last two months have really been an emotional rollercoaster for a variety of reasons. I’ve been very immersed in my own little Lymphedema world, researching, learning more and more (and also being disappointed with the lack of up-to-date information on the internet). I’ve been connecting more and more with others who suffer from this condition, listening to their experiences and stories (2 hour long phone calls to the USA, United Kingdom, Solvenia!), which has been incredible! It always feels like I’m listening to an echo of my own story when I speak with other Lymphies; the similarities are fascinating.

I’ve really had the urge to do something more with my blog, my story, my mission to raise awareness of Lymphedema, which in turn has been pretty draining on me mentally. I feel like there…

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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

 

6 months post-surgery — The Lymphosaurus Rex

Hey all, We have arrived at the 6 month mark following my Lymph Node Transfer in May. It just so happens that Dr Becker was in my neighbourhood this week (yes, random I know!) and we took the occasion to catch up and check out the fatty leg. Firstly, its still too early to see […]

via 6 months post-surgery — The Lymphosaurus Rex

Lymphedema and Compression

Sharing Karens story and her latest update as to how well she is going with the treatment of the Lymphedema… There was a time when she could not wear compression garments due to the size and shape of her legs… However Karen is now going really well it is so good to see.. Thank you Karen as always for sharing your story.. It shows that there is hope for everyone with Lymphedema. Take care

lymphedemaandme

I am not a person who likes to make absolute statements. I have always believed that what works for one person with lymphedema will not always work with someone else with lymphedema. Every person is unique.

BUT I am now going to say that I now believe that compression garments or wraps is the key to living with lymphedema. I have primary lymphedema and I have lived all of my life with it (well officially  the lymphedema didn’t show until puberty) and I have had a lot of lymphedema pain for the last 25 years. In the last few months I was able to have treatment where I was wrapped with Coban wraps and my legs were finally to a shape where I could actually wear compression stockings. WooHoo!!! I have not had lymphedema pain since I started wearing my compression stockings (actually since I started being wrapped with the Coban…

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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 …

Workshop at the Conference: Surgical management for lymphoedema

Sharing this to show the wonderful results of lymphatic lyposuction on a ladies leg… She now has her life back which is a huge bonus and makes it worth while to still have to wear her compression .. Thanks Lisa for sharing this positive outcome …

Lisa Higgins - massage across the table

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This was one of the many powerful presentations at the Conference, presented by Louise Koelmeyer of Macquarie University. What made it so powerful was that it was a case study of a patient who had undergone surgery and she and her husband were both there to discuss it with us first hand.  So many of the talks at the Conference are reports and statistics, so to be able to interact with an actual “case study” was invaluable.

The patient was 48, had six children and was then diagnosed with a gynaecological cancer, requiring surgery/chemo/radiation.  After her treatment she developed lymphoedema in her left leg.  She lived “out bush” so getting treatment was difficult but she did manage it fairly regularly but couldn’t attend often enough to control the swelling. She had to give up her work as a teacher as she couldn’t move easily but more importantly her leg…

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Lipoedema at the 11th Australasian Lymphology Association Conference

Some of you may recognise the symptoms of Lipodema and not just Lymphedema… This is some useful information…thanks Lisa for this

Lisa Higgins - massage across the table

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I’ve just returned from the 11th Australasian Lymphology Association Conference, held in Darwin from 26-28 May, 2016.  These conferences are filled with information on the latest research which is always interesting and a bit mind-boggling at times.  I was very excited that this year there was a real focus on Lipoedema, a condition I am passionate about.  I’ll try and set out as much useable information as I can from two speakers in particular – Dr Ramin Shayan from the University of Melbourne, Australia and Associate Professor Karen Herbst from the University of Arizona, USA.  In this post I’ll focus on Dr Herbst.

Firstly, according to Dr Herbst, a few of the symptoms of lipoedema (for more information click here):

  • fatty enlargement of limbs (firstly legs, arms can develop later)
  • pain
  • predominantly women affected, if men then they have low testosterone or liver disease
  • bilateral and symmetric
  • sluggish…

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Radiation Induced Lumbar Plexopathy

Thanks fir sharing this infomation in the hope that others find answers for their unusual health problems post treatment

rectalcancermyass

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A few weeks ago someone left me a comment on Twitter after I tweeted about my balance problems. She mentioned Radiation Induced Lumbar Plexopathy, something I never heard of it, so I did some research. From what I read, I could very well have this.

My balance problems became evident after I was weaned off pain meds. Before that my doctors thought I was wobbly because of the heavy-duty pain meds I was taking. But when I was drug-free, they checked me over and all they could tell me was “I don’t know.”

I looked around the Internet to see if I could find out for myself and the only thing I came up with was… maybe the chemotherapy attacked my nervous system. I only had two doses but the first one they gave me was accidently over-dosed, so I figured that’s when the damage was done. Since I found nothing concrete and my doctors didn’t seem interested…

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