Lymphadema and Massage Information

Here is some information from the "At Your Service" section of the Times-Mail News out of Indiana.

(The lymphland link has a quicktime file when opening, which some browsers have trouble with, just wanted to give you a heads up on that)

Lymphedema data

COMMENT — My husband has lymphedema and I have done much research on the subject and one thing I can say is that going to a traditional massage therapist with no training in lymphedema therapy, manual lymphatic drainage (MLD) or complete decongestive therapy (CDT) can result in a worsening of the condition. So, I urge you to please find a certified lymphedema therapist.

A few ways to find a certified lymphedema therapist is to ask your physician, call your hospital or visit www.UnitedPhysicalTherapy.com. Good luck to you. N.B., an Internet reader.

COMMENT — Dear D.B. and Barbie, although regular massage feels good and can help move lymph fluid in some ways, there are precautions needing attention here. A soft touch Swedish massage would not hurt lymphedema but any hard type of massage such as rolfing, trigger point, Alexander technique could damage nodes and bring on a cellulitis attack.

What the reader needs is a certified, qualified lymphedema therapist to perform complete/combined decongestive therapy. It feels like a massage but it’s very specific bodywork to move lymph fluids out of the body. Sincerely, Tina Budde, www.lymphland.com.

ANSWER — Thanks to both of you for the heads up. After a little more checking, I discovered that lymphedema does require a different type of massage, ordered by a physician. So, D.B., of Bedford, or others who may be experiencing complications from lymphedema, speak with your physician about massage therapy or other possible relief treatments.

Getting Help for Lymphadema

I found several things of note lately, hopefully you will find something helpful to your situtation.

Here is a link for THE MEDICARE APPEAL PROCESS FOR LYMPHEDEMA - Courtesy Bob Weiss
The information is specifically for Medicare, but you might be able to use some of the ideas or processes for private insurance if you have it. It's very good information.

If you need supplies, here is a great place to go: Lymphedema Products. They have everything from bandages, to compression garments, to helpful books. Right now they are having a sale on Crocs RX Silver Cloud Shoes, which are advertised as

Impregnated with silver particles, the Crocs Rx Silver Cloud creates an anti-bacterial and anti-fungal environment for the foot. This shoe is ideal for individuals with lymphedema who are susceptible to skin breakdown, ulcers, foot fungus, or infections. The super-soft foot bed provides a gentle environment for sensitive feet, while the roomy toe box accommodates the swollen foot without creating any tightness or pressure points. The protective front toe cap and elevated heel rim protect the lymphedematous foot from stubbing and bruising.

I also found an article that promises some help (at least in the future) to people suffering from lymphadema. The article was written in Top Cancer News (www.topcancernews.com

The frequent spread of certain cancers to lymph nodes often necessitates surgery or radiation therapy that damages the lymphatic system and can cause lymphedema, a condition of localized fluid retention that often increases susceptibility to infections.

The researchers of the University of Helsinki, Finland, and the Ludwig Institute of Cancer Research show that application of vascular endothelial growth factor-C (VEGF-C) to replace excised mouse lymph nodes and lymph vessels ensures formation of mature lymphatic vessels and incorporation of lymph node transplants into existing lymphatic vasculature. An improved outcome of lymph node transplantation is evidenced by improved lymphatic drainage and restoration of normal lymphatic vascular anatomy in VEGF-C-treated mice.

The ability to transfer lymph nodes that reconstitute a functional network of lymphatic vessels in adult tissues is of particular importance in cancer follow-up therapy, as lymph nodes can prevent systemic dissemination of metastases. Accordingly, VEGF-C-treated lymph nodes were more effective in trapping metastatic tumor cells than control transplants.

It has been estimated that approximately 20-30% of patients that have undergone irradiation or surgery of the armpit in response to lymph node metastases develop lymphedema later on. Damage to the large collecting lymphatic vessels, which resemble smaller veins, causes the vast majority of all lymphedemas. It has been estimated that several million patients suffer from such acquired lymphedema worldwide. The treatment of lymphedema is currently based on physiotherapy, compression garments and occasionally surgery, but means to reconstitute the collecting lymphatic vessels and cure the condition are limited.

The Finnish researchers applied vascular endothelial growth factor-C (VEGF-C) gene therapy in mice after surgery removal of axillary lymph nodes, a procedure that mimicked removal of axillary lymph nodes in patients in response to metastatic breast cancer. They found that treatment of lymph node-excised mice with adenoviral VEGF-C gene transfer vectors induced robust growth of the lymphatic capillaries, which gradually underwent an intrinsic remodeling, differentiation and maturation program into functional collecting lymphatic vessels, including formation of uniform endothelial cell-cell junctions and intraluminal valves.

As VEGF-C quite potently increases the rate of lymph node metastasis, the researchers sought to develop a mode of therapy that could be safely applied also in patients that had been treated for cancer. They established that the VEGF-C therapy greatly improved the outcome of lymph node transplantation. As a result, they were able to reconstruct the normal gross anatomy of the lymphatic network in the axilla, including both the lymphatic vessels and the nodes, suggesting that VEGF-C therapy combined to autologous lymph node transfer is feasible in the clinical setting.

The advantage of this rationale is increased patient safety in instances of recurrent malignancies, as the transplanted lymph nodes provide an immunological barrier against systemic dissemination of cancer cells, as well as other pathogens.

The findings demonstrate for the first time that growth factor therapy can be used to generate functional and mature collecting lymphatic vessels. This, combined with lymph node transplantation, allows for complete restoration of the lymphatic system in damaged tissues, and provides a working model for future treatment of lymphedema in patients. Effective lymph node transplantation holds tremendous potential for immunotherapy applications in the treatment of diseases such as cancer and chronic infections. Furthermore, the findings encourage the use of growth factor therapy to enhance the vascular integration and viability of transplanted tissues.

The group is currently pursuing this form of therapy in larger animal models in order to eventually treat lymphedema patients. Further the group aims to discover methods that would accelerate lymphatic vessel maturation.

And lastly an article that reminds us that we need a good supportive network around us for those times when lymphadema is kicking our mental and physical butts! This article comes from the Eastern Kentucky Appalachian News Express.

Everyone needs a good cheerleader

Sometimes we can be so closed-minded we fail to see things beyond our immediate circumstances. Stuck in the moment, we are unable to see past our dilemma

Thus was my frame of mind last week when I complained of not being able to throw horseshoes for fear of developing lymphedema — a swelling of the arm. I was in my rocking chair, as Joyce Meyers describes in the “Beauty For Ashes” series, feeling sorry for myself as I dealt with loss about which I could do nothing at the momen

The cool thing about life though is there are always people around to help us through difficult times, and they often remind us that there is more out there than we are giving ourselves credit for, or can see for that matter.

As Joyce reminds us, we are all responsible for dealing with the obstacles in life causing us conflict. My mother, looking on the bright side of things, reminded me that I did not have to give up horseshoes. I would simply have to learn to throw left-handed, she said, reminding me I was already pretty good at using my left hand and it wouldn't take too much practice.

What would we do without cheerleaders in our lives?

I have definitely needed one over the past couple of weeks as I lost a cousin to cancer and watched as my mother and four of the aunts I have left, came to support the family of an aunt who had already lost the battle to cancer. It was depressing and painful as I could see the fear on my mother’s face.

The conflict became even greater when I went for a chemo treatment last week and met Jewelne Turner of Ratliffs Creek, who is a six-year survivor of breast cancer. Jewelne was brave as she informed me that doctors had given her daughter, Mitzi Thompson of Frozen, two months to a year to live from colon cancer.

Mitzi continues to fight, two years later, with the help of her father Jimmy Turner, husband James Thompson and especially her daughter, Kennedy, 13. Mitzi spent her first anniversary with her new husband in the hospital, she said, calling him a “Godsend.” Always with Mitzi on a trip to chemo or the hospital, Jeweline hangs tough, crediting prayer with her daughter’s ability to keep fighting.

Thank you Jeweline and Mitzi, and Mom — my cheerleaders this week.

Loretta Tackett is a staff writer for the “News-Express.”

My Big Foot on TLC

Tonight I discovered there is a program on The Learning Channel called "My Shocking Story" with one epsiode called "My Big Foot" about two different women living the "lymphadema life." I was sorry that I missed the very beginning of the show. My daughter actually told me it was on. It was interesting to see what therapy choices they chose and what results came from it.

I checked the TLC website and the program runs one more time January 28th at 12:00 a.m. but I couldn't figure out if it's eastern time zone or what. If you can figure it out, maybe you can tape it or something. I also couldn't find a place to order copies of programs, so I'm not sure if that service is available or not. If someone finds that information, I would like to know more.

Here is a brief snynopsis of the program:

My Big Foot

Vicki is 45 years old and since she was a child her leg has been growing bigger and bigger as a result of the condition, Lymphedema.

Her foot and leg have grown out of all proportions and are now so big that it’s hard to fathom that they are actually part of a human body - her leg alone weighs 7 stone. A single mum to her 8 year-old daughter, she is struggling to survive, living under the poverty line, with a terrible medical condition.

We spend time with Vicki, understanding how tough life is for her and really getting under the skin of what it’s like being her. Her spirit and sense of humour are indicative of her strength as she battles to live life to the full.

She has never had the finances to get treatment, but now through the help of Pam Cohen at Lymphax supplying her with free treatment and care, Vicki has a chance of a new life. Through massage and drainage, her leg will be reduced, and through wearing tight and painful supports she could reduce her leg to a normal size. She has been waiting for 30 years for this chance.

But Vicki's story becomes even more engrossing as her previous doctor reveals that unbelievably she has been allowed free medical care before, but has refused it as she has fallen in love with her leg. As she has had this condition for so long she looks at her leg as a living entity which separates her from normality and makes her feel exceptional.

As she begins to talk to her leg more and more, are we to believe she will really go through with the treatment or are her words just false promises?

This is a link to the center that helped Vicki with her condition

http://www.lymphatx.com/

Living with lymphedema

Today there was a very interesting article in the Rapid City Journal written by Lynn Taylor Rick. I especially liked the quote,

“I made my peace with it …I pray for people. That’s my prayer time,” she said. “How do you turn a curse into a blessing? I don’t hate it like I used to.”

I find that inspirational because I have definitely NOT made peace with my lymphadema. That's something that I'm still working on, but I really like the fact that she uses the time that lymphedema takes away from her for something positive - so it's like she's reclaiming that time from the disease. That's certainly something to strive for.

Below is the complete article:

To Teresa Postma, her lymphedema is as life-altering as the cancer treatment that caused it.

“It’s not life-threatening, but it does change your life,” she said. “You have to relearn how to do a lot of things. And this is for the rest of my life.”

Lymphedema occurs when lymphatic fluids accumulate in the body, most often in the arms and legs. The accumulation causes the limbs to swell, sometimes dramatically.

Lymphedema develops when lymphatic vessels are missing or impaired or have been damaged or removed in the treatment of such diseases as breast cancer.

If lymph nodes are removed or severed during breast cancer surgery, the remaining lymph nodes will occasionally pick up the slack. However, lymphedema occurs in about 25 percent of breast cancer surgery patients.

Onset of lymphedema can begin shortly after surgery or even years later. And while lymphedema is rarely life-threatening, it becomes an aesthetic and emotional reminder of the cancer that caused it.

It also requires a lifetime of vigilance, says Postma.

Postma first noticed a painful mass in her breast two years ago, at the age of 37. A mammogram showed a large tumor in her breast.

Doctors began by shrinking the aggressive tumor with chemotherapy and then removed the breast along with lymph nodes. Postma underwent still more chemotherapy and 36 weeks of radiation. Doctors now consider her cancer in an “observation mode.”

About four months after her cancer treatment ended, Postma noticed a slight swelling in her right hand. Because a representative from the American Cancer Society had warned her about lymphedema, she immediately sought care at the Rapid City Regional Rehabilitation Institute.

Physical therapist Karine Carpenter, who specializes in lymphedema treatment at the Institute, said patients need swift care when they suspect lymphedema because treatment can reverse Stage I lymphedema cases. Once to Stage II or III, lymphedema is irreversible.

Treatment of lymphedema combines a series of light massages called manual lymph drainage and specific pressure used on the affected limbs. It’s a routine that lymphedema patients like Postma incorporate into their daily lives.

Postma, whose lymphedema is Stage II, ends each day with manual lymph drainage, which promotes her body’s ability to transport lymphatic fluids effectively. She then wraps her hand and arm in gauze, providing enough pressure to keep swelling at bay without causing finger numbness. Then she covers the wrapping with a heavy night garment, which adds more pressure. She also elevates her arm for 20 minutes each evening.

In the morning, she removes the night compression garment and wraps and puts on a lighter garment that she wears throughout the day.

“Consistent use of the compression garment is very important,” Carpenter said. “It is a chronic ailment.”

Lymphedema sufferers are at an increased risk of infection in the affected limb, which means they must be extra cautious with injury, Carpenter said. They also must avoid heavy lifting or excessive use.

Those restrictions have affected Postma the most.

“I was very active,” Postma says of her life before cancer. She played tennis, basketball and volleyball. She also played the guitar and flute.

Because of lymphedema, Postma has had to give up or limit most of those activities. She can’t lift her kids with her right arm and can’t even push a shopping cart around the grocery store.

The sleeve limits her ability to do things such as braid her daughter’s hair and play the flute and guitar.

“It’s the life changes. So many things that I loved to do … Those are not options for me,” she said.

Even writing has become an issue for Postma, who once loved to journal. She’s in the process of learning to write with her left hand.

Postma admits that early on, she dreaded her nighttime routine. It not only reminds her family of the cancer, but it takes time and energy. She’s since grown accustomed to it.

“I made my peace with it …I pray for people. That’s my prayer time,” she said. “How do you turn a curse into a blessing? I don’t hate it like I used to.”

Carpenter said lymphedema treatment does take time and effort, but it’s the only way to avoid sometimes drastic swelling.

It also allows cancer patients to maintain their appearances and move on from their cancer treatment. “It’s very important to people,” she said.

While Postma is far from comfortable with her lymphedema treatment routine, she’s finding it easier with each day. “I’m not friends with it yet,” she said.

But she wants others like her to know there is help and hope. And lymphedema can be managed.

“It’s OK to feel overwhelmed by it … but don’t stay there. You can’t stay there because there are too many options,” she said. “Get there (to the doctor) right away. Don’t wait.”

Contact Lynn Taylor Rick at 394-8414 or lynn.taylorrick@rapidcityjournal.com.

Photo caption: "Teresa Postma pulls on her night compression garment as she demonstrates how she prepares her arms for the night to help with her lymphedema." (Seth A. McConnell/Journal staff)

Hormone may prevent lymphadema

This is some hopeful news! If anyone's had any experience with it, I would love to find out more.

Hormone May Be New Drug Target For Preventing Lymphedema, Tumor Spread

A hormone secreted by cells throughout the body and known to play a role in cardiovascular disease and other cell functions is also critical for proper formation of the lymphatic system in mice, according to research from the University of North Carolina at Chapel Hill School of Medicine.

By targeting this hormone, called adrenomedullin, researchers may be able to treat the more than 100 million people worldwide affected by lymphedema, a condition that causes painful swelling in arms and legs.

“Our research also may lead to therapies to prevent cancer cells from traveling through these lymphatic vessels to infiltrate other parts of the body,” said Kathleen M. Caron, senior study author and assistant professor of cell and molecular physiology and genetics at UNC.

Adrenomedullin is a powerful vascular peptide that can widen existing blood vessels and even promote the growth of new ones. But it also has many more functions, such as helping control metabolism, heart rate, thirst and appetite, stress response, antibacterial activity and nerve signal transmission.

The study, published Dec. 20, 2007, in the Journal of Clinical Investigation, demonstrates that this peptide is necessary for yet another function in our bodies: without it, our lymphatic system an important part of the body’s immune system does not form normally. The lymphatic system includes lymph nodes and a network of thin tubes that transport fluid and immune cells that have leached out of tissues back into the circulatory system. These tubes branch, like blood vessels, into all the tissues of the body. Between two and three liters of the almost colorless fluid called lymph go through the lymphatic system in a day.

If this system fails to function properly, excess fluid collects and swells in tissue, causing lymphedema. In rare instances, the condition is inherited through genetic mutations. For two to three million cancer survivors, it comes as a consequence of early treatment, as the surgical removal of lymph nodes and radiation therapy creates damage to the lymphatic system that lasts a lifetime. But the most common cause, affecting up to 120 million people worldwide, is a parasitic infection.

“Lymphedema is a very serious problem,” Caron said. “Not only does it limit your mobility, but it can be quite painful and disfiguring.”

The only current treatments for the condition using low compression stockings and other garments, and massage are not much help, Caron says. Before now, only a dozen or so genes had been implicated in the formation of lymphatic vessels, or lymphangiogenesis, and none of them have yet yielded an effective therapy. But through this study, the researchers have described three new targets, adrenomedullin and two of its partners in the cell, which together hold true promise for a pharmaceutical treatment for lymphedema.

Caron and her team of researchers discovered the importance of this hormone in the formation of the lymphatic system after genetically manipulating mice so that they completely lacked either adrenomedullin or its related cell partners. They found that these mice looked a lot like other mice with impaired lymphangiogenesis. Careful examination showed that the lymph sacs that normally take up excess fluid from the tissues were much smaller than they should be, and the sacs without adrenomedullin were made up of fewer cells than normal.

By increasing adrenomedullin within the cells of the lymphatic system, the researchers believe that they can encourage the lymph sacs to proliferate and take up more fluid. Not only could this approach provide a new treatment for lymphedema, but it may also prove useful in preventing the spread of cancer because invasive cancers sometimes penetrate the lymphatic vessels and metastasize to distant sites.

“In cancer treatments of the future, patients suffering from these aggressive cancers could be identified early and could be treated with a drug to inhibit the growth of the lymph vessels that transport the cancerous cells, thus keeping the cancer in check,” Caron said.

The research was funded in part by The Burroughs Wellcome Fund, the National Institutes of Health and the American Heart Association.

Study co-authors are Kimberly L. Fritz-Six, William P. Dunworth and Manyu Li, all of the UNC School of Medicine.

Lymphadema Treatment

This is some "refresher" information, but I thought the detailed information about self care was very good. It's very discouraging that there is no cure for lymphadema, but one of the best things you can do is to remain hopeful and do your best to take care of yourself - both physically and mentally. I know it can be difficult at times, especially if you don't have people around you that understand what it's like to live with lymphadema - lucky for us we have the internet and we know that we aren't really alone.

Here's to a brighter New Year - hoping that you find a treatment that helps you, and that you find some peace within yourself while coping with this disease!

Lymphedema is a notoriously debilitating progressive condition with no known cure. The unfortunate patient faces a lifelong struggle of medical, and sometimes surgical, treatment fraught with potentially lethal complications.

The underlying problem is lymphatic dysfunction, resulting in an abnormal accumulation of interstitial fluid containing high molecular weight proteins. This condition underscores the tremendous importance of a normally functioning lymphatic system, which returns proteins, lipids, and accompanying water from the interstitium to the venous circulation near the subclavian vein–internal jugular vein junction, bilaterally.

Frequency:

• In the United States, the highest incidence of lymphedema is observed following breast cancer surgery, particularly among those who undergo radiation therapy following axillary lymphadenectomy. Among this population, 10-40% develop some degree of ipsilateral upper extremity lymphedema.
• Worldwide, 140-250 million cases of lymphedema are estimated to exist, with filariasis being the most common cause
  

At present no cure for lymphedema exists. Surgery is palliative at best, and it may be a part of the lifelong therapy patients must endure to manage this disease.

Medical therapy: The goal of conservative therapy is to eliminate protein stagnation and restore normal lymphatic circulation. Initiate therapy as early as possible before extensive irreversible fibrosclerotic changes occur in the interstitium. These techniques are often cumbersome, uncomfortable, inconvenient, and time-consuming. Strict compliance is essential, and treatment lasts throughout the lifetime of the individual. The majority of compliant patients can be treated successfully with conservative measures.

Meticulous hygiene is necessary to remove keratinaceous debris and bacteria. Cleanse the skin regularly and dry thoroughly. Regular inspection is necessary to identify any open wounds or developing cellulitis. Bland skin moisturizers applied conservatively may ameliorate cracking and furrowing. Even with excellent skin care, chronic cellulitis may occur. At the earliest signs of infection, institute topical or systemic antifungal or antimicrobial therapy to prevent sepsis from developing. Long-term prophylactic antimicrobial treatment with agents such as penicillin, cephalexin, or erythromycin may be required in 15-25% of patients experiencing recurrent lymphangitis or cellulitis. Although relatively uncommon in this country, filariasis is treated with diethylcarbamazine.

Encourage patients to lose weight, avoid even minor trauma, and avoid constrictive clothing that might have a tourniquet effect. Encourage elevation of the affected extremity whenever possible, particularly at night. For lower extremity lymphedema, this may be accomplished by elevating the foot of the bed to an appropriate level.

Patients should use compression garments continuously during the day. They may be removed at night when the extremity is elevated in bed, but they should be replaced promptly each morning. To encourage compliance, the elastic compression garments must fit appropriately. Garments should be custom fit when the extremity is decompressed, they should be comfortable, and they should not have a tourniquet effect. They should also have graduated compression, increasing from distal to proximal, on the affected extremity.

Intermittent pneumatic pump compression therapy may also be instituted on an outpatient basis or in the home. These manual lymphatic devices are most appropriate prior to fibrosclerotic evolution, and they assist in preventing fibrosclerotic evolution of the condition. These devices provide sequential active compression from distal to proximal, effectively milking the lymph from the extremity. In Europe, the best available nonsurgical therapy is manual lymphatic drainage according to the Vodder and/or Leduc techniques. Compression garments are essential between treatments. Contraindications to this therapy include congestive heart failure, deep vein thrombosis, and active infection. Similarly, other authors advocate manual massage of the affected extremity to recruit collateral vessels so that the accumulated lymph can be drained into neighboring regions with normally functioning lymphatics.

Diuretics have no role in the treatment of lymphedema.

Benzopyrenes, including flavonoids and coumarin, have become a useful adjuvant in other countries but are currently not available for clinical use in the United States. These drugs bind to accumulated interstitial proteins, inducing macrophage phagocytosis and proteolysis. The resulting protein fragments pass more readily into the venous capillaries and are removed by the vascular system.

Surgical therapy: Surgical treatment is palliative, not curative, and it does not obviate the need for continued medical therapy. Moreover, it is rarely indicated as the primary treatment modality. Rather, reserve surgical treatment for those who do not improve with conservative measures or in cases where the extremity is so large that it impairs daily activities and prevents successful conservative management. The goals of surgical therapy are volume reduction to improve function, facilitation of conservative therapy, and prevention of complications. A myriad of surgical procedures have been advocated, reflecting a lack of clear superiority of one procedure over the others. In general, surgical procedures are classified as physiologic or excisional.

Physiologic procedures attempt to improve lymphatic drainage. Multiple techniques have been described, including omental transposition, buried dermal flaps, enteromesenteric bridging, lymphangioplasty, and microvascular lympholymphatic or lymphovenous anastomoses. None of these techniques has clearly documented favorable long-term results. Further evaluation is necessary. Moreover, many of theses physiologic techniques also include an excisional component, making it difficult to distinguish the two approaches.

Excisional techniques remove the affected tissues, thus reducing the lymphedema load. Some authors advocate suction-assisted removal of subcutaneous tissues, but this technique is difficult because of the extensive subcutaneous fibrosis that is present. Additionally, this approach does not reduce the skin envelope, and the lymphedema often rapidly recurs. Suction-assisted removal of subcutaneous tissue followed by excision of the excess skin envelope has no clear advantage over direct excisional techniques alone.

The Charles procedure is another quite radical excisional technique. This procedure involves the total excision of all skin and subcutaneous tissue from the affected extremity. The underlying fascia is then grafted, using the skin that has been excised. This technique is extreme and is reserved for only the most severe cases. Complications include ulceration, hyperkeratosis, keloid formation, hyperpigmentation, weeping dermatitis, and severe cosmetic deformity.

Staged excision has become the option of choice for many authors and is described in greater detail. This procedure involves removing only a portion of skin and subcutaneous tissue, followed by primary closure. After approximately 3 months, the procedure is repeated on a different area of the extremity. This procedure is safe, reliable, and demonstrates the most consistent improvement with the lowest incidence of complications.

Source: emedicine.com