*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.
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.
LYMPHEDEMA EXPLAINED
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.
LOSING BLADDAR CONTROL
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.
POSSIBLE ELIMINATION OF TAXOTERE
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.
Lisa
