Chemotherapy Starts Friday (2/14/03)


Ann's recovery from surgery on 1/17/03 is almost complete. She went back to work on Tuesday (2/11/03) and she is ready to move onto the next phase of her treatment, chemotherapy, beginning on Friday, 2/14/03.

This email reviews Ann's progress since the last email, outlines the process that she went through to decide on an Oncologist, and describes the specific treatment that is planned for the coming months.


SURGICAL RECOVERY CONTINUES AND PAIN SUBSIDES

Ann's recovery from surgery continues to progress. Her surgical wounds are healing without complication. She is using her left arm actively though in a slow, measured, and deliberate fashion.

There is no problem with pain from her surgical wounds but she still has significant discomfort related to the nerve that was removed along with lymph nodes from under her arm (as part of the axillary lymph node dissection). She complains of pain in her arm that feels like needles pricking her and the area under her arm binds and hurts when she tries to raise her left hand over her head. She stopped taking narcotics for pain on Thursday (2/6/03) but is still taking acetaminophen (the active ingredient in Tylenol) and ibuprofen (the active ingredient in Advil) for her continued nerve pain.



PHYSICAL THERAPY ORDERED TO IMPROVE RANGE OF MOTION

The range of motion in Ann's left arm increases steadily as a result of her daily exercise regime. With much effort and discomfort she can reach her hands over her head but still can not keep her elbow straight while doing so. Her surgeon's nurse examined her range of motion on Tuesday (2/4/03) and decided that the binding under her arm ("cording") would benefit from massage. As a result, Ann is now scheduled for physical therapy twice a week for the next three weeks. We still expect a full recovery of her range of motion.

We are very pleased that the rehabilitation will be done by therapists trained in the treatment of lymphedema so they will be careful with her arm. Moreover, the treatment center is very close to home and just a block out of Ann's normal commute to/from work; it could not be located more conveniently!



LYMPHEDEMA STUDY BEGINS

Prior to her surgery, Ann agreed to participate in a two-year, clinical study to see whether daily massages designed to drain lymphatic fluid are effective in preventing lymphedema in women treated for breast cancer who have had one or more lymph nodes removed. Actually, there are two parts to the study. The first part is to see whether women will really do the massages every day for two years. The second part is to see whether this daily, manual lymphatic drainage helps train the lymphatic system to re-route lymphatic fluid away from where lymph nodes were removed and toward remaining lymph which have the capacity to handle additional fluid. Learning how to do the manual lymphatic drainage is one of Ann's benefits for participating in this study. Another benefit is that she will be monitored closely for any signs of lymphedema.

The study involves periodic monitoring and extremely detailed measurement of Ann's arm for signs of chronic swelling, a sign of lymphedema. We were very pleased to see that her measurements on Tuesday (2/4/03) were almost the same as prior to surgery.



PATHOLOGY OF SURGICAL SPECIMENS CONFIRMED

We asked Northwestern Memorial Hospital (NMH) for a second opinion regarding the pathology of tissue removed during Ann's surgery on 1/17/03. These specimens included breast tissue from the lumpectomy as well as 20 lymph nodes. As you recall, NMH's second opinion of specimens from Ann's biopsy of 12/12/02 resulted in a more severe diagnosis. Consequently, we were anxious that they might find something in the surgical specimens from 1/17/03 that the pathologists at Evanston Northwestern Healthcare (ENH) had missed.

We were very pleased that the pathologists at NMH confirmed the report from ENH regarding the surgical specimens from 1/17/03. Namely, the edges ("margins") of the tissue removed from the breast are cancer-free, 18 lymph nodes showed no signs of cancer and two sentinel nodes showed only micrometastatic disease.

This confirmation helps us move forward without any doubts about Ann's diagnosis.



SECOND CONSULTATION WITH DR. MERKEL

On Thursday, 2/6/03, we had a second consultation with Dr. Merkel, a medical oncologist at ENH. The purpose of this consultation was to ask additional questions about his recommended treatment options, namely, FEC (5FU, epirubicin, and Cytoxan) and TAC (Taxotere, Adriamycin, and Cytoxan).

- We asked for more information on his personal experience administering FEC and TAC. He indicated that he has been administering FEC for about two years. He has administered TAC for about six months.

- We asked for more information on the efficacy of TAC and he referred us to the impressive interim results of a phase III clinical trial coordinated by the Breast Cancer International Research Group (BCIRG), BCIRG Protocol 001. These results were presented at the annual meeting of the American Society of Clinical Oncology (ASCO) in May, 2002 and an abstract of the findings is available on the ASCO website.

  http://www.asco.org/ac/1,1003,_12-002324-00_18-002002-00_19-00141-00_29-00A,00.asp

More details are available in a PowerPoint presentation which can be downloaded from the BCIRG website via a link at the bottom of the page describing the protocol.

  http://www.bcirg.org/Internet/Studies/BCIRG+001.htm

The study compares the disease free survival (DFS) survival rate for two regimes, namely, FAC (5FU, Adriamycin, and Cytoxan) vs. TAC. With 33 months of follow-up, the interim results show TAC more effective than FAC overall as well as more effective in each of Ann's categories; women with 1-3 positive nodes (DFS 90% vs. 79%!), with positive hormone status, and negative HER2. (Since Dr. Merkel considers FEC and FAC to have similar efficacy, he believes that TAC is also more effective than FEC, the other regime that he recommended for Ann.)

- For the TAC regime, the drug that would be injected just under the skin ("subcutaneously") at home to stimulate the production of white blood cells (to prevent infections) is Neupogen

  http://www.nlm.nih.gov/medlineplus/druginfo/uspdi/202628.html
  http://www.neupogen.com/patients/patientpi.html

- We asked a series of questions regarding plans for hormone therapy. Regardless of the chosen chemotherapy, it is important to suppress estrogen production and its availability to tumor cells since estrogen stimulates Ann's breast cancer to grow. This suppression will be accomplished in two phases. First, for two years following radiation and chemotherapy, estrogen production will be shut down using a drug Zoladex (assuming the chemotherapy does not cause permanent menopause). Second, for five years following chemotherapy she will take tamoxifen to make estrogen unavailable to cancer cells.

  http://www.nlm.nih.gov/medlineplus/druginfo/uspdi/202267.html
  http://www.breastcancercare.org.uk/Breastcancer/Drugtherapy/Zoladex/
  http://www.breastcancercare.org.uk/Breastcancer/Drugtherapy/Tamoxifen

- As we confirmed with Ann's gynecologist, bearing children is not possible without estrogen. Thus, effective treatment of Ann's breast cancer eliminates the possibility of us having children other than through adoption. Dr. Merkel volunteered that he would be happy to write an opinion letter for adoption purposes attesting that Ann has a good outlook for a long and healthy life.



SECOND ONCOLOGY OPINION AT NMH

We met with Dr. William Gradishar at NMH for a second oncological opinion on Monday, 2/10/03. Following a physical examination and interview he offered the following comments:

- Lumpectomy and radiation alone would give Ann a 30-40% chance of recurrence because she had two positive lymph nodes. Chemotherapy and hormone therapy will improve her outcome substantially.

- His hormone therapy recommendations were essentially the same as those offered by Dr. Merkel.

- He offered a choice of two chemotherapy regimes, namely, FAC, and AC followed by T ("AC->T"). FAC (5FU, Adriamycin, and Cytoxan) would be administered in six cycles of three weeks each. AC->T would be offered in two phases; four cycles of AC (Adriamycin and Cytoxan) followed by four cycles of T (Taxol, generic: paclitaxel); each cycle would be only two weeks long, an accelerated frequency known as "dense dose," and therefore would require Neupogen injections to stimulate white blood cell production.

  http://www.nlm.nih.gov/medlineplus/druginfo/uspdi/202682.html
  http://www.breastcancercare.org.uk/Breastcancer/Drugtherapy/Taxol

- He said that both treatment plans suggested by Dr. Merkel, i.e., FEC and TAC were reasonable and he considered all four plans, i.e., FEC, TAC, FAC, and AC->T, to have essentially the same efficacy. He indicated that there is no "international consensus" on which "recipe" would work better for Ann's case. By recipe he meant both the drugs themselves as well as the order and cycle frequency in which they are given. The clinical trials that will prove which, if any, of these recipes is superior are going on now but the results will not be known for several years.



ANN CHOOSES DR MERKEL AND TAC

There were several reasons for choosing Dr. Merkel instead of Dr. Gradishar:

- Location: Getting chemotherapy treatments in Ann's choice of Evanston, Highland Park or Glenview is much more convenient than going downtown.

- Attitude: Dr. Merkel's office jumped though some hoops to get us an appointment sooner than we originally scheduled. His nurse made herself available for impromptu questions one day when we just happened to be at the hospital. He spent as much time with us as we requested, answered all our questions, and shared as much clinical data as we requested for our decision-making process. Finally, Dr. Merkel demonstrated sensitivity to Ann's needs when he suggested administering chemotherapy on a Friday to minimize the impact on her work schedule.

- Detailed Knowledge: Dr. Merkel cited specific studies for all his comments on prognosis and efficacy. As one cancer survivor we talked to said, "He's a walking encyclopedia of statistics" and we liked the idea that we could walk through his thinking by reading about these studies ourselves. When we brought up issues we'd read about he knew about the articles and gave us additional, unpublished information about the specific studies.

- Focus on Clinical Evidence: In discussing treatment plans he was careful to delineate what made sense or seemed promising as opposed to what had been proven conclusively in a clinical setting. He is anxious to adopt the latest techniques but not before they are being proven. It is a balance that we value.

After selecting Dr. Merkel as Ann's medical oncologist, the reasoning for choosing TAC was simple: we want the most effective, clinically tested treatment available now.

TAC will be harder on Ann than FEC but it shows signs of being the most effective treatment for women like Ann. We can not see into the future. But if she chooses FEC and there is a recurrence or distant metastasis in Ann's future then we do not want to be left wondering...wondering what would have happened if she'd chosen the more aggressive treatment. We are willing to trade the rougher ride that TAC involves for the hope of never traveling this road again.

The most worrisome side effect of TAC is a compromised immune system. We accept that we must be vigilant to keep Ann healthy during this time of greater vulnerability to infection.



PREPARING FOR CHEMOTHERAPY

In addition to talking to medical oncologists and reviewing proposed treatment plans we've also done a number of other things to prepare for chemotherapy:

- Ann had a MUGA scan of her heart on Wednesday (2/5/03) to establish a baseline prior to starting chemotherapy because some of the drugs recommended for Ann's chemotherapy are toxic to the heart. Her test confirmed normal heart function at this time.

  http://heartdisease.about.com/library/blmuga.htm
  http://www.chfpatients.com/tests/muga.htm

- We joined support groups for survivors and spouses, respectively, that are run by The Cancer Wellness Center which is located just a few miles from our home.

  http://cancerwellness.org/
  http://cancerwellness.org/supportgp.html

- Ann started some regular, aerobic exercising. Dr. Merkel says that she will handle chemotherapy much better if she gets at least 30 minutes of aerobic exercise at least five times each week. Nello has been leading her on long, brisk walks through Glencoe neighborhoods and Chicago's loop and she says that she can feel the difference already!

- Ann ordered a wig from Salon 475. This was her chance to break out and try being a blonde or redhead but she ordered something similar to her own hair with auburn highlights. A breast cancer survivor gave her some baseball-type hats and sleep caps. Ann's mother-in-law lent her a large collection of silk scarves. Ann is as ready as she can be for hair loss.

- We celebrated Valentines Day a week early with a wonderful Italian dinner followed by a funny play at a community theatre.


NEXT STEPS

On Friday (2/14/03) Ann will begin her chemotherapy regime of TAC every three weeks for a total of six cycles.

She will continue her daily exercises for: range of motion, lymphatic drainage, and low-back pain. She will bolster her energy level with 30 minutes of aerobic exercise at least five days a week. And she will attend physical therapy.

Nello will try to keep Ann infection-free by administering her injections of Neupogen and making sure that both of them eat well, get plenty of rest, and avoid contact with people who may be ill.

Both of us will attend our respective, weekly support groups.

If everything goes according to schedule, Ann's last chemotherapy will be Friday, May 30th.

We are looking forward to what summer will bring.

Love,

Ann and Nello

Posted: Wed - February 12, 2003 at 12:00 AM        

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