If you are a cancer patient who has been diagnosed with a blood clot and you now have a very swollen leg/legs that your doctor cannot explain, please read on– our experience may illuminate your own.
Just this week, an interview with a physical therapist at Rehabilitation Hospital of the Pacific was published in our local newspaper. Cheri Teranishi-Hashimoto is not just a physical therapist– she is also certified as a Cancer Exercise Trainer and as a Lymphedema Specialist. What she had to say about swollen extremities in cancer patients so profoundly confirmed my own conclusions about John’s condition at the time that it seemed very important to me to share this valuable information with others who may be experiencing what we did: multiple doctors who had absolutely no clue about why this was happening to John. Because they had no diagnosis for this sudden and very alarming swelling, by extension they had no suggestions at all about how we might treat the swelling, nor how to relieve the discomfort.
My own diagnosis after hours of Internet research was:
”post-phlebotic syndrome” (loosely translated as “symptoms arising in the aftermath of a blood clot”), with resulting lymphedema.
John’s symptoms were legs so swollen that the skin was actually splitting open and oozing clear serum. His skin on his legs had also changed color and was a dark reddish-brown, which I discovered was the result of seepage of iron in the blood into surrounding tissues, which actually stains the skin a rusty color. Here is a photo of his lower legs, with one worse than the other, showing how tight and shiny his skin was, as well as the alarming color:
Below are salient extracts from the interview with this lymphedema specialist.
Lymphedema is excess accumulation of protein-rich fluid in the body. Secondary lymphedema occurs as a result of trauma or damage to the lymphatic system, including surgery, radiation or an infection. [Here I would add also: "as the result of a blood clot."]
Stage 1 is characterized by observable pitting or swelling which can be reversed by elevation, special drainage techniques and specialized exercises. Our skin is very elastic and will continue to stretch as much as it can to accommodate the fluid build-up. However, once the transport capacity of the lymphatic system is compromised, it is always at increased risk for recurrence. When our lymph nodes are damaged, they do not regrow and they don’t repair themselves.
Stage 2 is when the fluid has stayed in the tissues for a longer period of time. It cannot be removed readily by the lymphatic system the protein-rich fluid begins to harden or become fibrotic.
Stage 3 is what is commonly referred to as elephantiasis, where tissue and skin changes are very observable.
Treatment involves two stages of complete decongestive therapy. Phase I, the “decongestion” stage, occurs under the guidance of your therapist. Phase II, the “preserve and improve” stage, is the lifelong care routine which is performed on your own once therapy is completed.
Manual lymphatic drainage is a hands-on technique that helps to guide the fluid from the congested area of the body to other areas for removal. These techniques are taught to the patient to be performed on their own at home.
Lymphedema is not “curable”. For those who do develop this condition, we recommend that they continue Phase II of treatment for life to decrease the risk from symptoms recurring or worsening.
The article ends with the quotation that inspired me to post this entry: “Many of my patients mention that there is a need for community education about lymphedema and a need for more resources for those affected. [Amen!] You should be able to obtain information from your primary care physician, medical oncologist or other health care team provider. [The word "should" deserves heavy emphasis-- our experience was that we did not have access to information from our health care team because they themselves had not been exposed to continuing education on lymphedema and Post Phlebotic Syndrome.]
In our case, there was no manual lymph drainage specialist in our HMO’s physical therapy department who had experience working with post phlebotic syndrome, and only one therapist outside of our system skilled in this technique. Our palliative care doctor would not refer John to this physical therapist because she did not agree with my conclusions. She kept insisting that the redness and oozing was caused by overly dry skin and urged slathering with creams and emollients– when the treatment of choice for the oozing of the skin in Post Phlebotic Syndrome is quite the opposite: keeping the skin dry.
Since out medical team could offer no guidance or direction, I again turned to the Internet. I found, amazingly, quite a few YouTube videos on “how to perform manual lymphatic drainage”. The technique seemed quite simple and very unlikely to cause any harm, as the amount of pressure to exert with one’s hands was described as “like stroking with a feather, barely touching the skin”. A dear friend who is a skilled hospice nurse and has observed skilled practitioners of manual lymphatic drainage in action with hospice patients confirmed that it was very unlikely that I could do any damage in attempting this myself on John. She said that she had seen this technique result in dramatic improvement in just an hour.
To our great surprise, it did seem that John’s legs became less tight and slightly less swollen after just a few minutes of very gentle directed stroking. I continued this stroking several times each day; not only did the swelling of his legs improve, but the red-brown color also gradually faded considerably.
Although we will never know whether this improvement was due to my attempts at manual lymphatic drainage, there is no question that just being able to offer something at a time when John’s doctors could offer nothing was a lifeline of hope for him.
This article that appeared so unexpectedly so long after the fact was a big confirmation for me that my instincts were right. What I learned is that manual lymphatic drainage is a technique which is routinely taught to family members as a simple hands-on way to increase mobility and ease the discomfort of their loved one. How unfortunate that our doctors were unaware of this fact.
In doing more research today, I discovered our doctor’s ignorance about this was considerably more egregious in view of the fact there is an ongoing clinical trial, begun in 2008, to determine whether “complex lymphedema therapy” reduces the severity of Post Thrombotic Syndrome.
“Complex lymphedema therapy” is described as having 4 components:
1. meticulous skin care
2. manual lymph drainage
3. compression therapy (stockings and/or bandaging)
4. exercises and patient education
This trial is being conducted by the University of Vermont and is now in Phase III. In the following description of the trial, I found the ultimate medical confirmation of my own conclusion and an explanation of the link between the aftermath of a blood clot and the development of lymphedema:
While the pathophysiology of Post Thrombotic Syndrome is incompletely understood, chronic venous hypertension and insufficiency may increase the workload of the lymphatic system and may result in over-capacitance with secondary damage and eventual lymphatic insufficiency. In selected patients with PTS, we have noted a symptomatic improvement in those who receive lymphedema therapy to the limb.
Knowledge is power. May all cancer patients benefit.
Shedding Light On The Cancer Journey is now in E-book format, readable on your PC/Mac, Ipad, Android, Blackberry or Kindle. If you would like to learn more about other cancer-related issues such as :
- troubleshooting pain control issues
- the decision about when to stop chemo
- differences between palliative care and hospice care
- how to choose a truly excellent hospice
- and the myriad of other considerations of cancer patients and their loved ones that most doctors never discuss
Shedding Light On The Cancer Journey is available on Amazon: http://www.amazon.com/dp/B004T3331M The author speaks from from first-hand experience with palliative care in the home when her husband was dying, from 25 years of experience at the bedside of dying patients, as a trainer of new hospice volunteers in the area of contemplative care, and from having successfully transformed several non-functional aspects of her HMO for the benefit of all future cancer patients.
Shedding Light On The Cancer Journey is a not-for-profit labor of love.