Tuesday, December 3, 2013

Lymphedema explained

*Note:  Taxotere made my lymphedema worse.

My appointment with Dr. R. went well yesterday.  My fingernails  are no longer infected.  What a relief. But, my lymphedema is rearing its ugly head.

Lymphedema in my right arm, hand and fingers first appeared in 2010 about a month after my surgery to remove a local recurrence in my skin along the inner right side of my chest.  At that time, one lymph node was taken from my armpit to determine if the cancer had spread.  Cancer in the breast typically spreads to the under arm lymph nodes first before it spreads anywhere else.  (A small percentage of lymph fluid drains to the nodes in the middle of the chest.  That is where my cancer spread.)  The first indication that something was wrong was the development of a golf ball sized mass at the incision site under my arm where the lymph node had been removed.  This swelling was drained of clear fluid three times before it finally subsided.  In 2005, when I had my bilateral mastectomy, two lymph nodes were taken from that same area of my armpit.  My lymph nodes for both surgeries were cancer free.  As a result of this additional lymph node being removed, the drainage pathway for the lymphatic fluid was further compromised resulting in my lymphedema.


Here is a description of how fluid gets trapped in the limbs of the body.
The lymphatic fluid is carried by the bloodstream first.  Once it reaches the capillaries, this fluid penetrates through these membranes and spills out into the surrounding tissues providing those cells with necessary nutrients and gases so the cells can function properly.  This fluid in the tissues then picks-up wastes from the cells, dead blood cells, toxins, and cancer cells from the tissues.  About 90% of this fluid enters back into the blood stream.  The rest enters the vessels of the lymphatic system.  As this clear yellowish fluid travels through the lymph vessels, it enters lymph nodes along the way.  These nodes filter-out various harmful or not needed components from the fluid in order to prepare it for entry back into the blood stream.  If the lymph nodes detect a pathogen, it sends lymphocytes (white blood cells) into action.  Lymph nodes also trap and destroy cancer cells, but the nodes can become overwhelmed by cancer just as it cannot control all bacterial and viral infections. 

Lymphatic fluid travels in one direction.  That direction is always toward the subclavian vein in both the right and left side of the neck where the lymphatic fluid reenters the bloodstream.  There are one-way ducts throughout the lymph vessels so there is not back-flow of the lymph fluid.  Since the lymph fluid is not pumped by the heart, the body uses other methods to do this job.  The skin provides compression and aids in this movement of lymph fluid.  When swelling occurs, this no longer functions properly.  Compression garments help by applying pressure against the small vessels near the skin and aids in the fluid movement. There are also smooth muscles along the lower larger lymph vessels to move the lymphatic fluid. 

When there is damage to the lymphatic system, as there is when lymph nodes are removed, there is a disruption in the flow of this fluid causing fluid to accumulate.  This is lymphedema. The worst type of edema is called elphantitis.  This tropical disease damages the lymph system and is horribly disfiguring.  My lymphedema is considered mild, thankfully.  My hand is different in appearance from my left hand and when my fingers are swollen there is a tightening of my skin that was mildly painful in the beginning, but none of that prevents me from doing any activity.  Although there is swelling in my arm, it is not as noticeable as the swelling in my fingers and hand.  When the lymphedema first appeared, I could press on my wrist and top of my hand with my fingertip and it would leave an indention on my skin where it had been.  The pitting would remain for less than a minute and then disappear.  As time moved on, this pitting became less and less and I found I didn’t need to wear my compression glove and arm sleeve to help control the swelling as much as I had been.  I was so happy to see veins visible on the top of my hand again and my fingers no longer were as swollen.  But now I again can see the pitting in my hand when I press a fingertip into my flesh.  I have started wearing my compression glove again.  Perhaps this is just a flare up as my oncologist today said that some of her patients have experienced.  I sure hope so.  It is such an ugly reminder, along with my separating fingernails, of what hell my body is experiencing.

If you experience swelling in the arm or hand after removal of lymph nodes, see you breast surgeon for a diagnosis.  If it is lymphedema, compression garments are essential.  A physical therapist can do lymphatic drainage techniques to aid in removal of the excess fluid which may help.  That person can also teach you how to do it yourself which is easier on the wallet.

My oncologist and I have spoken in the past about my losing control of my ability to stop urine from leaving my body when I cough or sneeze.  This problem began for me after beginning treatments of chemotherapy for this third diagnosis of cancer.  Recently, I have found that when my bladder is really full, I am experiencing leakage.  Dr. R. explained that this can happen when women get older.  It can be the result of having children and losing estrogen as the body moves into menopause.  That is me, had children and now in chemo induced menopause.  Dr. R. said, when I had spoken to her previously about this, that the chemo drug, Taxotere, could be a factor.  If it worsens, I could be seen by an urologist for testing to determine if there are other causes.  In the meantime, I could do those Kegal exercises that doctors tell woman to do when they are pregnant to strengthen the pelvic floor muscles which may help prevent the urine from leaking out.  This is just another fun bodily malfunction from the life and times of me.

I also discussed with Dr. R. about possibly eliminating Taxotere from my treatment.  At a previous appointment, I mentioned to her about my discovery on the internet of women explaining that Herceptin or Herceptin and Perjeta were the only drugs used in their treatment.  This occurred because their tumors were appearing on their scans as stable or their tumors were classified as NED (no evidence of disease).  Dr. R. had said we could discuss this further at a later time.  Since, I have bypassed the 6 month mark I again asked if this was an option for me.  She said that it was, but before any decisions were made she would first like to discuss this with the other 5 oncologists on staff.  Perjeta is fairly new, released for use in June of 2012, so most of the oncologists in her practice have not had much experience in determining the best time to consider removing Taxotere from this particular treatment regimen.  (only 30% of breast cancers are Her 2 neu)  She is going to ask the team if and when they might consider treating me with Herceptin and Perjeta only.  I am excited about this prospect due to the side-effects of Taxotere.  I did ask, if I stopped Taxotere could I ever go back if it is discovered that the Taxotere was the drug  keeping my cancer stable rather than the Her 2 neu targeted therapies.  During my last discussion about stopping Taxotere, I thought she said I could not return to that drug.  Today it became clearer that what she meant was another regimen would probably be offered because the Herceptin and Perjeta would have shown to be ineffective and there are so many other good treatment choices to keep my cancer under control.  But if it became necessary we could consider Taxotere again in the future. 

As we continued our discussion of possibly discontinuing Taxotere, Dr. R. said that studies have shown that some woman have stable tumors for long periods of time with only Herceptin used in their treatment.  She said of course for me or anyone there are no guarantees, but she felt that it was a good possibility that my cancer will continue to respond to Herceptin based on how I am responding presently.  If she had to make an educated guess, she said she would say that the Herceptin and Perjeta are the drugs that are keeping my cancer stable not the Taxotere alone.  Most patients with Her 2 neu positive tumors will receive some combination of drugs that includes Herceptin for the rest of their lives. She also gave me some interesting information about Herceptin.  This drug can stop working and for some reason when a patient is taken off Herceptin and then re-introduced to it sometime later, Herceptin begins to work again. 

Dr. R. was very thorough today in answering my questions and gave me much hope for the future.  She mentioned that my cancer tumors are so small that if we didn’t know for sure that one of the lymph nodes contained cancer cells, someone might look at my scan and suggest that I am NED (no evidence of disease) or at least really close to it.  She said that there is still a possibility that my tumors may shrink or disappear from a scan because of their size.  If I was a patient with widespread tumors that possibility would be highly unlikely.  Since my tumors have responded positively during this first line of treatment, it may be an indication of how my tumors will respond in the future. No guarantees, but for now all good news to me.  This appointment left me with some much needed hope.

Getting rid of the Taxotere chemotherapy drug decision will be made after my next scans in January and the recommendation of her team.  I hope it goes positively because I would like to have a full head of hair again.  Taxotere would no longer be present to kill those fast dividing cells.  My hair would grow normally again.  Plus food would taste better.   

Speaking of hair…my hair continues to grow on my head.  It is thin, but visible.  But, for some reason, where I need it most, on the top front of my head, it still is not filling in as nicely as the sides. Bummerrrrr.  My bodily hair is still barely noticeable.  Yes, no underarm shaving is necessary. 

That is all for now.  Thanks for reading.



  1. "cancer tumors are so small that if we didn’t know for sure that one of the lymph nodes contained cancer cells, someone might look at my scan and suggest that I am NED (no evidence of disease) or at least really close to it. "
    Wow I loved reading this! Sounds like news I'd love too.
    I really need to send you a message and have been meaning to. I've been so scattered these last few days and busy with what I'm not sure of. But I promise to get in touch with you soon.

  2. No worries about sending message. Send when you have time. I know how busy life can get especially with children. I read your story about Garth on Facebook. He was one happy kid!

  3. HOORAY for good news...for the HOPE you have with you today and tomorrow and on and on!!! Hooray for the doctor spending time answering questions! Hooray for hair growing in places you want it and NOT in armpits. Hooray for no infection under your nails. So MANY things to shout HOORAY over! And, a big thank you for the education in this post. I found myself saying "ohhh!" and "Now I understand" aloud! I appreciate that!!!
    Love you right to pieces Friend and am SO HAPPY that your December appointment was an uplifting near finish to this heavy year! You are AMAZING! xoxoxoxoxoxo

  4. It is a huge credit to your writing abilities that I was able to read about Lymphedema and not have my mind wander. Usually I would have to read information about things like this three or four times. You have an excellent way of being thorough while creating a picture that my pea-brain could understand and follow! Thank you for the education!
    I, like Sandie, am so happy there was positive and hopeful news at this appointment! What an excellent Christmas present for you and your family.
    Thank you again, for sharing this with us. I find I look forward to your next installment as soon as I finish reading each blog. :D
    You ARE amazing! Love you and miss you!