Thank you so much! :)

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Thank you, thank you so much for all the support you have given me in the creation of my New Blog, it has been just amazing with over 500 views in just one day. I have also had many, many beautiful messages of support and encouragment which have really lifted me. When I started to blog I had no idea how it would go, if there would be any interest but it has spread across the world and is now read in 127 countries, truly amazing. There have been nearing 100,000 views and 272 posts. Many if you have created posts for me and I hope you continue to do so. Just email me at helenbrd@bigpond.net.au to share your story. I would still love to hear from someone who has had the lymphatic lyposuction, SAPL proceedure.

I would also like to ask everyone no matter where you live to encourage your goverment to give support to Lymohoedema. It has been far to long that Lymphoedema has been ignored by goverment health programs. Everyone should have access to the treatment that they need and the garments that they need to wear. The burden should not fall to the patient, in which case many do not get the care that they need and the Lymphoedema becomes worse and worse. Please give Lymphoedema and voice, a loud voice. Lets hope that more high profile people like #Kathy Bates start to speak out instead of hiding their problem. We have become a “cyber community” of fellow lymphies who are there to connect and support each other, we are no longer alone or silent.

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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

A Journey With A Purpose. . .

Hi Elizabeth I am reblogging this to show people the difficulties of living with Lymphedema. I also want to share your words of warning about the sun and checking your skin regularly. In Australia with our harsh climate this is a very real problem… Thanks for your honest account right down to the shower chair…

Clinical trials New York..for Breast cancer patients

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This is an opportunity for patients who have had breast cancer treatment to be part of a clinical trial in New York … Thank you to the Lymphatic Reasearch Foundation for bringing this to my attention.

Innovative Technique Seeks to Prevent Lymphedema in Breast Cancer Patients
Herbert Irving Comprehensive Cancer Center at NewYork-Presbyterian/Columbia University Medical Center is enrolling patients in clinical trial
NEW YORK (Jul 23, 2013)

A team of surgeons and members of the breast cancer program of the Herbert Irving Comprehensive Cancer Center at NewYork-Presbyterian Hospital/Columbia University Medical Center is conducting a two-year pilot study of an innovative microsurgery technique coupled with imaging technology to not only prevent lymphedema but also potentially detect and treat it early.

Lymphedema, the accumulation of lymph fluid in the arm and painful swelling due to blocked lymph drainage, occurs in up to 13 percent of breast cancer patients after sentinel node biopsy and external-beam radiation, increasing to 40 percent following complete axillary lymph node dissection (ALND) and radiation.

Lymphedema can also affect other cancer patients. Surgery and radiation after lymph node removal can cause scarring that blocks the lymph ducts, not only in the underarm but also in the legs, groin, pelvis, or neck after treatment for uterine, prostate, ovarian, or prostate cancer, as well as lymphoma and melanoma.

It can be difficult to treat lymphedema, which often requires lifelong therapy with compression garments to prevent lymphangitis (inflammation) and cellulitis in the affected limb. The condition can greatly affect quality of life for breast cancer patients and, some studies suggest, is associated with a two-to-three-fold increase in mortality in the six years following a cancer diagnosis.

The current study of the lymphatic microsurgical preventive healing approach (LYMPHA) is the first to be conducted outside of the University of Genoa in Italy, where it was developed. Dr. Sheldon M. Feldman, the principal investigator, was invited by the developers, Drs. Francesco Boccardo and Corradino Campisi, to observe their team in 2012.

The LYMPHA technique creates a bypass to restore lymphatic flow by connecting lymph vessels to a branch of the axillary vein, a pathway normally severed by node removal or blocked by tissue fibrosis resulting from radiation, says Dr. Feldman, chief of the Division of Breast Surgery and the Vivian L. Milstein Associate Professor of Clinical Surgery at NewYork-Presbyterian/Columbia University Medical Center.

Previous techniques for preserving lymphatic flow were lengthy and complex, and surgeons could not predict which patients would develop lymphedema or benefit from intervention. The LYMPHA bypass adds only 20–30 minutes to breast cancer surgery and ALND. “In addition to removing all potentially cancerous lymph nodes, we can now restore lymphatic flow and reduce the patient’s risk of developing lymphedema,” says Dr. Feldman.
Prior to ALND, a blue dye normally used to identify sentinel nodes is injected into the upper arm to map the lymphatic circulation from the arm. During the node dissection, the surgeon preserves a branch of the axillary vein and keeps a suitable length for reaching the lymphatic vessels.

The vein connection, or anastomosis, is then performed by a microvascular surgeon, using a sleeve technique in which the lymphatic vessels are inserted into the cut end of the vein to restore normal lymph flow. A mastectomy is performed at the same time as the node removal and LYMPHA procedure.

Before their surgery, study patients undergo an imaging technique known as lymphoscintigraphy, using a radiotracer such as technetium, and bioimpedance spectroscopy with a device called the L-Dex, to establish baseline lymphatic volume in the arms.

In addition to the regular follow-up visits normally scheduled after an ALND, postoperative monitoring includes physical exams for lymphedema, lymphoscintigraphy, and L-Dex bioimpedance spectroscopy to confirm that the LYMPHA bypass is open and functioning.

“We actually use the L-Dex routinely before breast cancer surgery. Then if patients need lymph node dissection, we carefully monitor them with the L-Dex. If they begin to develop increasing lymph volume in their arm, even if there’s been no external change, we know they are on their way to developing lymphedema,” says Dr. Feldman. “By using a support sleeve and seeing a physical therapist (for range-of-motion exercises), they may never experience lymphedema.”

This study is part of a comprehensive lymphedema management in the breast cancer program at NewYork-Presbyterian/Columbia encompassing education, lymphedema prevention, and, in the future, potential treatment of patients with lymphedema who have not responded to decongestive therapy, which involves wrapping of the limb and specialized massage for drainage.

The LYMPHA pilot study seeks to enroll 10 patients with confirmed nodal metastases whose veins are suitable for the bypass.

The next step would be a multicenter trial throughout the U.S. to confirm the efficacy of the LYMPHA procedure. Eventually it could become the standard of care for cancer patients needing ALND. The lymphatic-venous bypass could also potentially be used to treat patients with lymphedema that is not well controlled with decongestive therapy. The earlier treatment begins, the more likely the condition is to be reversible.

Says Dr. Feldman, “We can now help patients maintain a normal quality of life by most effectively preventing and treating lymphedema without compromising their cancer treatment. We never want to let quality of life trump the cancer treatment. We want both—we don’t want people to experience lymphedema.”

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Photo Helensamia

To be considered for the study, breast cancer patients needing lymph node dissection should contact Amiya Vaz at 212-305-1317 or by email at: av2454@columbia.edu.

Artificial Lymph Nodes????

Lymphatic vessel

Lymphatic vessel (Photo credit: Wikipedia)

I wonder if in the future Artificial Lymph nodes could be created….. Imagine the possibilities that could open up for the treatment of all types of Lymphoedema…it is good to see that research is being done in this area….

The Sunnybrook Research Institute

“The lymphatic research group is part of the biological sciences platform and the Brain Sciences Research Program at Sunnybrook Research Institute (SRI). Our principal investigator, Dr. Miles Johnston, has studied the lymphatic circulatory system for over 30 years.

We are investigating several issues related to the relationship between lymphatic vessels and disease, including:

The role of lymphatic injury in the generation of post-surgical lymphedema in breast cancer.

We are fully affiliated with the University of Toronto.

The loss of the lymph nodes in cancer patients may have a much more negative impact on tissue fluid balance than has been considered in the past. Available evidence suggests that the absorption of protein-free water into the capillaries of the nodes has an important role in the regulation of pressure and volume in downstream anatomical elements of the lymphatic system. The autologous transplantation of lymph nodes into the surgical resection site could facilitate the restoration of normal lymph transport in the affected limb. However, the removal of a normal lymph node could lead to donor site morbidity.

We are investigating the possibility of developing an artificial lymph node that could be implanted into the surgical resection site. We are attempting to create an implant that will stimulate new blood vessel and lymphatic vessel growth resulting in the recreation of an intact lymphatic network.

Current therapeutic measures are applied to patients with entrenched edema and the outcome is often unsatisfactory. In the case of breast cancer-related post-surgical lymphedema, the timeline of the disorder can be linked to the removal of lymph nodes. Therefore, it is likely that a higher success rate may be achieved with treatment started early (lymph node transplantation or its artificial equivalent) since the chronic sequel of events leading to lymphedema might be prevented”.... Ref.. Sunnybrook Research Institute website

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Google images

Sorry if you’re Squeamish!!!

Sorry if you get squeamish but this picture was too good to miss as we can see a real Lymph node and Lymphatic Vessel.http://www.lymphovenous-canada.ca/research.htm. 1997. Reading this research we have actually come a long way since 1997…. and we have further to go… It is amazing to think that the little pearly looking node has the ability to grow new lymphatic vessels and find new pathways in the body!!

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Photo Lympho-venous research Canada 1997

Lymphatic-venous anastomoses… An Interesting Article

I saw a link to the following article on Facebook today and thought it would be good to share. This is another example of the latest surgical techniques being used to combat secondary Lymphoedema.

Microsurgical lymphatic-venous anastomoses have a place in the treatment of peripheral lymphedema and should be the therapy of choice in patients who are not sufficiently responsive to nonoperative treatment. Improved results can be expected with operations performed at earlier lymphedema stages. (c) 2007 Wiley-Liss, Inc. Microsurgery 2007

The superficial lymph glands and lymphatic ves...

The superficial lymph glands and lymphatic vessels of the lower extremity. (Photo credit: Wikipedia)

Tiny bypass that relieves the misery of swollen limbs
By DIANA PILKINGTON
PUBLISHED: 22:59 GMT, 8 April 2013 | UPDATED: 22:59 GMT, 8 April 2013
Daily Mail newspaper England

Lymphoedema — painful swelling in the limbs — is a common side-effect of treatment for breast cancer, but also blights the lives of thousands of men with conditions such as prostate cancer.
Stuart Elcock, 69, a retired civil servant from Buckinghamshire, underwent a new procedure for tackling it.

THE PATIENT

“In 2011 I found a lump at the top of my right leg,” said Stuart Elcock “When doctors told me I might develop lymphoedema after surgery for a tumour on my thigh, it was the least of my worries: I just wanted to get rid of the cancer.I’d been treated for testicular cancer years ago, but had more than three decades of good health after that.
Then, in 2011, I found a lump at the top of my right leg — it was a sarcoma, a rare type of cancer in the connective tissues.The doctors said it might be due to the radiotherapy I had in the Seventies.The surgeons managed to get the sarcoma out.
But over the next two months, my right leg swelled until it was about 50  per cent bigger.

I had lymphoedema, where the lymph system — a network of tiny vessels that drains tissue fluid back to the blood — doesn’t function properly.It was caused when the surgeons removed some of the lymph nodes next to my cancer.The nodes are like filters, and the surgeons took them out to check if the cancer had spread. But if they are damaged or removed, fluid can build up. My leg grew very heavy and I lost the feeling from my groin down to my knee. The skin became hard and my knee and ankle swelled.
I struggled to walk short distances and had to stop driving,showering was difficult — I couldn’t wash my feet because my knee was swollen, so my wife, Morag, had to do it. She also had to put on my shoes and socks. Other problems arose, too — the lymph system helps defend against infection, so you can get skin infections.I needed antibiotics for two bouts of cellulitis, infection of the tissue below the skin. I had numerous urinary infections, too.

My GP referred me to a lymphoedema clinic, where I was given a compression stocking, but after a few days of wearing it, the 8 inch surgery wound in my thigh opened slightly and lymph fluid started leaking. Even with lighter compression, the wound opened and the fluid soaked on to my boxer shorts.My GP referred me back to the Nuffield Orthopaedic Centre in Oxford, where I’d had my cancer surgery.

Dominic Furniss, a plastic surgeon, suggested I try a procedure he had recently learned in Japan, which would redirect the fluid away from the wound. I quickly agreed.
In April last year, I was put under general anaesthetic for six hours while the surgeons stitched some of my lymph vessels directly to my veins so the fluid could bypass damaged nodes. Over the following weeks there was a gradual improvement in the swelling in my leg; although it’s only gone down a bit, the increase in mobility is tremendous. The skin has softened and the feeling is back.I can walk the half mile from home to the shops with no trouble, and can shower, drive and put shoes and socks on unaided. The cellulitis, urinary infections and leakage are gone, and the wound has healed nicely.”

THE SURGEON
Dominic Furniss is a plastic surgeon at Oxford University Hospitals Trust and Oxford University. He says:
“More than 125,000 people in the UK are affected by lymphoedema. It’s very common in women who’ve been treated for breast cancer — about 60 per cent of sufferers whose lymph glands are treated will develop it, but you can get it after many other cancers, too, such as testicular, prostate and melanoma. There are even reports of lymphoedema in the face after radiotherapy for head and neck cancer. For someone like Stuart, who was leaking lymph fluid through his open wound, it can be very distressing.
Conventional treatment involves massage, compression and life-long skincare to prevent infections, but this doesn’t address the cause — the blockage to the outflow of lymph fluid.
This new technique — supermicrosurgery — rather than trying to force the lymphatic fluid past the blockage, we direct the lymph vessels into the veins so the fluid bypasses the obstruction. The lymphatic vessels and veins we work on are tiny — between 0.2mm and 0.8mm in diameter — so we use a microscope and super-fine instruments.
First, we make about four 1in incisions in the affected limb, and find the lymph vessels and veins just underneath the skin. We then take some of the lymph vessels and stitch one end into a vein, using nylon stitches about a fifth of the thickness of a human hair. Studies show the more vessels and veins you join, the more effective it is, so we do between six and ten, depending on time. The operation takes four to six hours.
As we only go up to 2cm deep into the tissue, the only real risk with the operation is a superficial wound infection. It leaves scars, but they aren’t very noticeable, and there’s no great risk of damage to deep structures such as nerves and tendons.
The real joy about this operation is that it’s minimally invasive, and most patients can have it done under local anaesthetic.

When Stuart came to me, he was struggling with daily tasks and his wife said he wasn’t the man he used to be. But when I saw them again a few months ago, she said: ‘You’ve given me my husband back.’ He had normal shoes on and trousers — I’d only seen him in loose-fitting elasticated ones.

This technique won’t cure very bad lymphoedema, but we can reduce the complications, make the limb feel softer, and reduce the swelling. The benefits continue accruing for about four years after the operation.We can now identify early stages of lymphoedema and even those patients who are at risk of getting it. For example, if a woman with breast cancer is to have her lymph glands removed from her armpit, we can perform this surgery before the swelling manifests. So many people survive cancer nowadays that we need to look at the complications of their treatment and improve their quality of life.
Techniques like this can help.”

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One year after treatment

The operation is available on the National Health Service in England and costs about £10,000 when carried out privately.

Read more: http://www.dailymail.co.uk/health/article-2305937/Lymphoedema-Tiny-bypass-relieves-misery-swollen-limbs.html#ixzz2QEfWAJjy
Follow us: @MailOnline on Twitter | DailyMail on Facebook

Lower Body Exercises to help Lymphoedema of Legs

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http://www.youtube.com/watch?v=BADdLA0zyNw&sns=em

I saw these exercises today on You Tube and thought they would be useful for myself at the moment, also for anyone with Lymphoedema of the legs to help stimulate the Lymphatics of the lower body. Lymph in our bodies travels by the movement of the muscles that squeeze the tissue as they move and push the lymph into the lymphatic vessels helping it to leave the body. In my case I cannot go for a big walk or swim so these exercises will suit my limited abilities at this time. I also felt they are suitable for anyone, as you do not have to be “fit” to be able to do them. All you need is a chair and some time…. No excuses!!!!

English: Propulsion of lymph through lymph ves...

English: Propulsion of lymph through lymph vessel Français : Propulsion (centripète, vers l’intérieur du corps) de la lymphe (en jaune) dans un vaisseau lymphatique. Chaque cellule valvulée est un lymphangion, qui doté d’une fine enveloppe de fibres musculaires spiralées peut se contracter. Des trains rythmiques de contraction propulsent la lymphe vers les ganglions lymphatiques (Photo credit: Wikipedia) Propulsion (centripetal, inwardly of the body) of the lymph (yellow) into a lymphatic vessel. Each cell is a valved lymphangion, which has a thin shell of muscle fibers.

Exercise but Don’t Sweat It!

Lymph capillaries in the tissue spaces

Lymph capillaries in the tissue spaces (Photo credit: Wikipedia) if the limb becomes to hot more lymph will gather in the tissue causing it to swell. This in turn puts pressure on the whole system.

Exercise but don’t sweat it sounds a little crazy but when you have Lymphoedema this is the aim! Light exercise means light, not overdoing it but enough to move the lymph around the body but without creating more.

Exercise is important in the treatment of lymphedema because the movement of the muscles stimulates the flow of the lymph into the capillaries, unlike the blood, which flows due to the pumping of the heart. Wearing a compression garment during exercise also provides resistance to further stimulate the flow. However if the body gets to hot this causes excess lymph to be produced and leak into the tissues, causing a negative reaction, the limb will become tight and uncomfortable.

Taking it gently is not in my nature, I decided to get on an exercise bike and ride 5 km as fast as I could, well I paid the price for that one, with an unhappy leg! I really miss being able to do things like a run, bike ride or even a walk  on a very hot day, in Australia 40 degree days do not help. I used to love going to the beach but sun bathing is another no no! Over time I feel my leg loosing strength and me fitness.😕😕

Exercise is part of the daily routine in some form, walking and swimming I find the best. My favourite is to find a pool I can walk up and down in, as the natural pressure of the water acts as a compression garment and the limb remains cool. In Australia we also have classes called Encore, for those who have had breast cancer, to do water aerobics to help with Lymphoedema, also to help avoid it. I wish there were classes for those with other forms of Lymphoedema, not just as a form of exercise but to meet others and learn from each other, maybe this could be the next project! Just the activities of daily life will help to move the Lymph, sitting and standing in one spot for any length of time is not helpful.

When all the exercise is over and it is time to relax it is elevate, elevate, elevate!! Gravity will also help the lymph to travel away from swollen feet and ankles and encourage flow up the legs and into good lymph nodes. I also raise the end of the bed on a couple of paperback books to help lymph leave the legs during the night. Sometimes it is not possible to elevate the legs but I have a friend who has solved this by carrying a small folding stool with her everywhere, what a great idea! You know who you are!!!

What helps your Lymphoedema? What do you miss being able to do?

An aqua aerobics class.

An aqua aerobics class. (Photo credit: Wikipedia)