Tag Archives: cancer

Cautious (but big!) Hope

Some good news for breast cancer patients with secondary lymphedema:

On March 6th – Lymphedema Awareness Day – researchers presented investigational pre-clinical data on the first potential pharmacologic agent used in combination with surgery for the treatment of breast cancer associated lymphedema (source). In layman’s terms, this team of researchers have gathered data that shows lymph node transplant surgery could potentially maybe someday be a real thing, thanks to a vascular endothelial growth factor C (VEGF-C) called Lymfactin.

How would it work?

The therapy with Lymfactin involves a surgical operation where a lymph node flap is harvested from the patient’s lower abdominal wall and injected with Lymfactin, which leads to the transient presence of the adenovirus containing the VEGF-C gene. The lymph node is then transferred to the axillary region.

When the growth factor VEGF-C was injected into tissues of mice and later pigs, there was growth of new lymphatic vessels and restoration of lymphatic architecture. When combined with lymph node transfer, the administration of VEGF-C yielded an 80% improvement in mice with lymphedema. Researchers are developing a treatment that would enable a higher transfer success. Plans to start a phase I/II study in breast cancer patients are set for as early as next year (!).

Wendy Chaite, the founder of LRF, was quoted in the article as saying this treatment is “very promising,” and cites the current lack of any advanced treatments for lymphedema as making this research “all the more important for those who suffer from this condition.”

The implications of this study are huge. Currently, the only treatment options for lymphedema focus on minimizing swelling, controlling pain, and preventing infection. We’ve got wrappings, massages, compression.. nothing to cure or alleviate lymphedema, only maintain it. This condition is way too common to be ignored as much as it is. Let’s all hope that research continues to develop in this positive direction!

What do you think about this news? If it were to become an accessible and reliable treatment, would you do it?

The source for the information in this post came from a press release on MarketWatch.
For more information about Lymfactin, visit the Laurantis Pharma website.

Wishful Thinking vs Acceptance

How many times have you wanted to hear those words?

I can’t even begin to count how often I have wished my lymphedema would just magically disappear, that someday I would wake up and my leg would be normal and I’d have the delicate ankles I had always wanted. How badly I’ve wanted to wear shorts and skirts with confidence, to wear flats and cute shoes without them leaving indents in my skin! I’ve wanted it so bad, wanted a cure to come out of nowhere like some sort of lymphatic miracle and grant me those simple little pleasures. Want, want, want – but what about acceptance?

The reality of lymphedema is that it isn’t going anywhere. Just like any medical condition – be it physical or mental – wishing for it to disappear is pretty pointless. If anything, it can be extremely detrimental. Tough love, I know, but really – instead of wishing for something to change, you need to be proactive and take care of what you have: yourself. That includes managing your lymphedema, as well as accepting it for what it is. You are alive, and you need to celebrate and honor your aliveness by practicing good health! No sense in getting bogged down or letting your condition stop you from doing the things you love.

I’m a big believer in that everything happens for a reason, and that includes my lymphedema. If I didn’t have it, my life would be drastically different, be it for better or for worse. I wouldn’t be me – I wouldn’t have made this blog, I wouldn’t have developed the empathy and compassion that it has taught me, and I wouldn’t have met all the wonderful people who make up the Lymphie community. I would be missing the valuable perspective and experience that it has given me, and that outweighs all the mini skirts in the world.

What about you – what has lymphedema brought to your life? What has it taught you? What would your life be like without it?

Types of Lymphedema

Hello, lymphies! I hope you all have had a relaxing and happy holiday season, and are excitedly preparing for the New Year.

Recently, I’ve asked readers to send in ideas for posts and things that they would most like to see discussed, and a majority of you said you’d like to learn about the different types of lymphedema out there. What is the difference between primary and secondary lymphedema? What is cancer-related lymphedema? Where on your body can you become affected? Let’s explore these questions together!

Primary Lymphedema

Primary lymphedema is a congenital abnormality caused by malformations of the lymphatic system, and can be present at birth or may develop later, during puberty or pregnancy. It is most common in the legs, but also may occur in the arms or torso.

Secondary Lymphedema

Secondary lymphedema results from damage to the lymphatic system through traumatic injuries, surgical procedures, infections, etc. The most common cause worldwide is a parasitic infection, where the parasite lodges itself in the lymphatic system, obstructing lymphatic vessels and disrupting lymphatic flow (CancerQuest.org). Secondary lymphedema occurs most commonly in the arms but also can develop in the legs.

(This is the kind I have, from a cast on my leg that was too tight as an infant.)

Cancer-Related Lymphedema

In the United States, nearly all cases of secondary lymphedema are cancer-related. This is due to surgical procedures such as mastectomies, lumpectomies with radiation, and the removal of lymph nodes. Lymphedema is frequently associated with breast cancer, prostate cancer, pelvic area cancers, lymphoma, and melanoma, with breast cancer being the most common cause of cancer-related lymphedema.

From CancerQuest.org:

Because the lymphatic system is found throughout the body and carries fluid and cells, it can serve as a ‘highway’ for cancer cells migrating away from a tumor. When a tumor is removed, lymph nodes in the region are often removed as well, and examined for the presence of tumor cells. For many cancers, this is a routine part of the staging and treatment process. Radiation therapy used in treating cancer is often aimed at the lymph nodes in an effort to destroy any cancer cells that have drifted away from the tumor. These treatments can damage the lymphatic system resulting in the collection of lymphatic fluid in body tissues and results in swelling of the arms, legs, or trunk.

Where does lymphedema occur?

Lymphedema most commonly occurs in one arm or leg, but it can be present in both arms and/or both legs. It can also occur in the hands, feet, chest, back, neck, face, abdomen, and genitals.

For more information, check out Lymphedema People, which has a large list of different types of lymphedema as well as different disorders and diseases that are associated with lymphedema.

What type of lymphedema do you have? When were you diagnosed? If you feel comfortable sharing, please consider contributing your story in the comments section below.

A former Lymphie’s video has gone viral!

The above video shows cancer survivor Adam Starr performing amazing backflips and gymnastic stunts – all with only one leg. In 2009, Adam had lost his leg to cancer. Fastforward to today, and he is an internet sensation, appearing on websites such as the Huffington Post, the Daily Mail, and Reddit – just to name a few.

I had met Adam Starr a couple years ago on a lymphedema internet forum, where we were among the handful of young adults active on the site. He had lymphedema in one of his legs pretty badly before his unfortunate development of cancer, and was constantly battling infections. The few times that we had spoken, though, he had always seemed to refuse to be inconvenienced by his leg. While he had lymphedema he was a diver, wearing his compression garments even as he swam in the pool. After his cancer, he continues to show this incredible resilience by staying active, quickly adapting to his prosthetic leg and continuing to live his life to the fullest extent.

Adam’s story is a great reminder for us lymphies to never let our condition get in the way of living a full and active lifestyle. Such a wonderful story! Thanks, Adam, for being such a vibrant and inspirational person, and congratulations on going viral!