[Submitted by: William Anton Lee]
Post-op appointment today brought great news. Dawne’s thyroid tumors were totally encapsulated, meaning the cancerous stuff was contained within each tumor and not in the thyroid itself. When the thyroid was removed all of the cancer cells came with it. Combine this with earlier news that the lymph nodes draining her thyroid are clear of cancer and there is ample reason to celebrate. METASTASIS IS HIGHLY UNLIKELY.
More good news. Pathology results combined with predictive modeling the doctors use suggests that there is no advantage to doing “radioactive iodine” (RAI) treatments. This is huge. These treatments have really bad downsides for many patients. We’ll take the doctors recommendation to not do these.
Dawne did have two tumors. A 3.5 cm one in the left thyroid and a less than 1 mm one in the right thyroid. Both were found to be cancerous. Interestingly, prior to surgery the left tumor was thought to be only 2 cm and it was the only one to have a biopsy done on it. How good is it that Dawne decided in advance of surgery to have her entire thyroid removed? Darn good; it turned out to absolutely be the right decision. No future surgery will be needed now.
Recovery is in process. Balancing thyroid-hormone replacement is key and the doctor expects this will take a few months. Slit throat needs to heal and it is looking pretty good for being several days old. And unexpectedly, muscles need to heal in her arms and the back of her neck. The doctor explained how Dawne’s head was titled back at an abnormal angle and arms in the crucifix position during this protracted surgery which over stretches these muscles.
So family and friends, scream thank you doctor!
Picture says it best!
NO CANCER detectable in tissues and lymph nodes taken during surgery!
Dawne is home and doing extremely well. Final pathology will be done by the end of next week. We have every expectation that final pathology will show Dawne is completely clear of all cancer.
Remember our earlier “med-tech” talk? Final pathology is key. We are confidently looking at a “pathologically complete response” [pCR] directly attributed to the antibody drugs in Dawne’s regime. I am so glad Dawne fought the fight to get Perjeta added to her drug infusion protocol. Once added, Dawne’s tumors shrank away to nothing in 3 cycles, leaving the 3 remaining cycles to chase any breakaway cells that would be looking to seed somewhere else in her body.
Happy barely describes our elation this morning – more like euphoric!
Pictures are rumored to be worth 1,000 words. What do you think? Doesn’t Dawne look remarkable coming out of a 4-hour surgery.
I can’t say enough about the support you all have given Dawne.
Thank you. Thank you. Thank you.
William Anton Lee
I wrote several weeks ago about us actively working to transfer my care and treatment to Dr. Margileth, The Center for Cancer Prevention and Treatment, St. Joseph Hospital, in Orange, CA. Today marks the completion of this move. I received Cycle 3 treatments today.
Particularly noteworthy, they gave me all three drugs which were originally prescribed to start on December 16, 2013. Yes, the Perjeta saga has ended – I’m finally getting it.
The new support team is wonderful. Many details I could talk about tonight, but honestly I’m beat tired. The steroid regime given to prepare my body for the one chemo drug – Taxotere – is brutal. One of the side effects is you don’t sleep. Two hours of sleep last night. Six hours at the doctors office. Time to hit the bed and hope sleep comes easier tonight, although if the last two cycles are predictive that isn’t likely.
We’re back in the doctors office tomorrow for check-up and a shot which is supposed to help keep my white blood cell count elevated at normal levels. This is a first time for this drug. They told me that it also helps with suppressing skin lesions which have been troublesome over the last two cycles. All good news today! Not without a little drama today, but on balance the drama was well worth the outcome.
Good night friends!
Thank you for checking in.
I use the term “neoadjuvant” throughout. This means doing a portion of your drug therapies in advance of breast surgery, otherwise known as pre-op treatments. This is a “newer” protocol that became possible with the introduction of anti-Her2 drugs, the first being Herceptin and now the addition of Perjeta. As of today, it almost always includes taking at least one chemotherapy drug along with one or more anti-Her2 drugs via IV, otherwise known as infusion treatments. Although the day is coming when no chemo drugs need be combined with anti-Her2 agents.
The advantages of neoadjuvant treatment are:
- Sets the stage for possible minimalist breast surgery to include lumpectomy + bi-lateral breast conservatory/reduction (including the possibility of saving the nipples).
- Provides a testable indicator to ascertain whether the HER2 cancer is being responsive to drug treatments before removal of tumors.
- Increases the probability of pathological complete response (pCR) – meaning the tumors are 100% gone at the point of surgery.
- Increases the probability of disease-free survival (DFS) and overall survival (OS).
- Provides treatment protocols that reduce exposure to biologically harsh chemotherapy dominated regimes.
Before neoadjuvant treatment became an option, we women were exclusively treated post-operatively (adjuvant). The urge to do double mastectomy surgery was great. Having no real immediate markers the doctors were compelled to prescribe chemotherapy cocktails for extended periods of time hoping these were killing any and all extraneous cancer cells that might have moved into other body parts and/or preventing cancer from coming back after surgery.
I can’t begin to express just how wonderful it was to hear my doctor explain the new protocol. I have mentioned several times how much his advocating the addition of Perjeta to the Herceptin regime meant. The pathological complete response (pCR) rates when adding Perjeta go from around 21% to around 40% according to the study that the FDA relied upon. Other studies are saying that up to 75% of patients receiving two anti-Her2 drugs are experiencing pCR. The second doctor we saw said some studies are saying numbers as high as 90%. No matter the study, these are “cry your eyes out” remarkable. Without anti-HER2 drugs, using chemo only drugs only, the rates are in the 17% range.
The future is upon us. In clinical trials as many as 30% of the patients responded with 100% pathological response (cPR) on just the anti-Her2 drugs (no chemo drugs given). That’s significant. Let me repeat – without any old school chemotherapy drugs 30% of patients are shrinking their tumors to nothing. One of the jobs at hand must be to develop a simple test for us to determine if we fit into the 30% profile. Imagine that – no more chemotherapy drugs needed to heal before surgery. Until then all of us look at the current study ranges of 40% to 90%, when taking two anti-Her2 drugs in combination with chemotherapy drugs, and we realize we have ridiculously great odds of kicking cancer in the butt.
Now that’s good news!
Thought I would share a bit of the research we are doing on Her2-positive Breast Cancer and “standards of care”. Hopeful this will help those diagnosed with, or have significant others diagnosed with, this medical condition. My exact condition within this category is “invasive ductal cancer”; as such the standards offered are specifically relevant.
This material is an extraction from the National Cancer Institute, National Institute of Health, USA Government. Noteworthy, these are not the only such standards. National standards, in general, come from several organizations which are staffed by experienced research doctors who gather, synthesize and then publish conclusive findings from studies conducted world-wide, otherwise known as “clinical trials”.
[Note: The 3-drug regime Dr. Smith, my current Oncologist, prescribed is Pertuzumab (branded Perjeta), Trastuzumab (branded Herceptin) and Docetaxel (branded Taxotere). It is also the “go to” combination used by Dr. Marglieth, the doctor we sought out for a second opinion.]
As pertains to my on-going work to assure proper standards of care for me, Perjeta should be administered every 3 weeks for 3 to 6 cycles as part of one of the following treatment regimens for early breast cancer:
- Four preoperative cycles of pertuzumab in combination with trastuzumab and docetaxel, followed by 3 postoperative cycles of FEC;
- Three preoperative cycles of FEC alone, followed by 3 preoperative cycles of pertuzumab in combination ith docetaxel and trastuzumab; or
- Six preoperative cycles of pertuzumab in combination with docetaxel, carboplatin and trastuzumab.”
Regime #3 above comes the closest to my original prescription. Safe to say Perjeta remains the focus of my attention. It’s real simple. I need this drug added in Cycle 3. Carboplatin is another matter. It is one of the old school chemo drugs and I’m uncertain I want it added. My current doctor has asked. The second doctor seemed to be saying it may not be necessary, so I’m doing additional research before agreeing to it.
Medical reading is tough, but we’re trying hard to be an informed consumer.
We saw a wonderful Oncologist today. He confirms that my original 3-drug regime of Perjeta + Herceptin + Taxotere is “standard of care”. In his view the best standard of care. The new doctor did a great job explaining the history of the different chemotherapy protocols. He did express concern that the 2-drug regime I’m currently on, Herceptin + Taxotere, is not sufficient. You may recall the current regime is not the original regime due to interference from office staff. I still don’t get it. Anyway, it was reassuring to know that our original decisions to go with this Perjeta-led Neoadjuvant protocol was the best choice. My current doctor got it right in the first place.
More good news! The new doctor saw no problems moving forward. He supports adding in Perjeta on Cycle 3 except that he would add an additional cycle, a Cycle 7, in order to give Perjeta at least 5 cycles to do work on getting what the doctors call “pathological complete response”. That’s fancy talk for 100% shrinkage of all of my tumors before surgery. He was very bold saying that studies have shown success rates in the 90% range when using Perjeta along with the other drugs. His 90% number is a bit higher than those from William’s readings which were more in the 39% to 75% range; no matter, any of these numbers beat the heck out of the number attached to my current regime (22% chance at pathological complete response).
If it is possible to be excited about having breast cancer, I am. HER2 Positive Breast Cancer in the 1990’s had only a 17% chance of complete shrinkage. I’ll take 39% – 90% and thank the doctors and scientists who discovered these Anti-HER2 Drugs. To hear the new doctor say that patients receiving just Perjeta + Herceptin have a 30% chance of 100% pathological complete response is remarkable. We have to imagine a day when those among us can take a simple test to know we fall into that 30% group and thus never have to take a traditional chemo drug. This clearly is the future and the present is a relatively decent place to be.
I ended our session with the new doctor stating that I regretted the situation I found myself in. I saw no change in policy coming from the current medical provider. Doctors don’t typically like picking up patients who come to them via second opinions. I asked … and for very obvious reasons … we can’t afford to self-insure the Perjeta and the current medical provider refuses to back off their unwarranted policy of withholding proper care. The new doctor explained the difficulties associated with transferring care mid-stream. We spoke to the 39% we had read about and the 90% he offered (versus the 17% we read about as pertains to my default regime). He agreed!
Yes! My transfer of care is in the works. Well … we hope it is. We are waiting for a call from the business office at the new place to confirm everything.
The Cycle 2 chemotherapy session got re-scheduled to tomorrow. I’m a victim of the national weather. The nurse can’t get home from vacation. She is stuck waiting for open flights through congested airports.
Not sure how this will affect me because chemo appointments are supposed to be on Monday’s to give me the week to recover. It’s a late appointment tomorrow as well. Traveling home to Sacramento could be a challenge. Leaving tomorrow night after a late chemo session means driving through Orange County, then Riverside County, then LA County before crossing over the Grapevine. Southern California traffic after 3pm is routinely the pits.
Got some cool news. My cousin Lona will join me tomorrow. Having company during chemo sessions is a very nice thing. Lona will give William a break and a fair shot at packing the car if he decides to drive home immediately after my session. I miss my cousin bunches so chemo it is. Looking forward to seeing her.
I’m betting William and I will both be too tired to travel tomorrow night. Thursday is looking more like travel day this time.
Christmas came early for me. Thank you doctor for once again taking the time to call me in advance of family time. I have to say that I am blessed with a wonderful Cancer Surgeon who understands the complexities of medicine while not losing human compassion in the process.
Gift #1: My HER2 Positive breast cancer officially tested negative for genetic markers. No BRCA genetic indicators found.
Gift #2: BEST NEWS YET! The Bone Scan results (preceded by PET Scan results) came in – my cancer is not metastatic.
Recalling for those that are familiar with the generally accepted stages of cancer that based on biopsies taken from a couple of weeks ago my lymph nodes were diagnosed as irritated, but showed no signs of cancer within the lymph nodes.
Now we focus 100% of our energies on the little buggers in my breast. Die bugs die!
GOING PUBLIC: MY WAY
[Preclude: The thoughts below revisit events up to December 10th and mark the beginning of my public conversation starting first with Facebook and then eventually here in this journal. These are an extract from my first public post on Facebook.]
William, and I started down the long path seeing the specialists, with my daughter, Michelle, at every visit taking notes and asking questions. My son, Robert, also joined us at the Oncology visit with many of his own questions. I am so blessed for my family and all of my friends who have reached out already with words of wisdom and prayers. We are blessed with an outstanding General Practitioner, Dr. Daoud, who promptly referred me to an amazing multidisciplinary team with access to state-of-the-art treatment protocols. Those who have experience with cancer know that initial diagnostics are done with imaging studies and biopsies. The final pathology is not really known until after surgery. This only means that things can change, but not enough to discourage aggressive pre-op treatments until surgery. I’m fortunate that HER2 Positive Cancer is now treatable with two concurrent antibody infusions. These drugs attach to the HER2 Proteins on the cell wall of the cancerous cells and kill the little buggers. You are reading correctly – the cancerous tumors are reasonably expected to shrink way. There are many patients who experience these tumors dying back so much that when surgery comes the doctors are working using markers to guide removal of affected tissues.
The upside to the new protocol is we do not face the old carpet bombing routine of double and triple chemotherapy drugs. I imagine you all have family and friend experiences from the past that best explain this historical reality. The downside is that the FDA approved the use of the two new Antibody drugs along with a single Chemo Drug and only as a pre-surgery protocol. I’m preparing to lose my hair, eyebrows and eyelashes. The hair loss I was more than prepared for. I’m not so happy about the eyebrows and eyelashes. It’s not vanity mind you – it’s that these two genetic features are constant reminders of my father. The doctors say that these will grow back – I have one wish and it is that they still look like my daddy when they grow back. Hey, a girl has the right to hope! Here’s a little bit of medical irony. My liver is “suspect” and as such the doctor is allowed to start the infusion treatments with a lower level of the Chemo drug so as to not stress it out too much. They might even be compelled to drop the one Chemo drug entirely, although that would mean liver complications are all too real and we may not want to hear that news either. But … even without the Chemo drug the new Antibody drugs are FDA approved to go forward. The best news is that we will know within 3 cycles (42-63 days) that the tumors are responding to treatment and dying off. Every reason to believe this will be my reality.
Many know I did not wish to do Chemo Therapy. I was adamant. My husband tells me I’m the most open-minded person he knows. He might be on to something there. I’m agreeing to the above pre-surgery protocol with the new Antibody drugs and Chemo because with it we will know that the cancer cells are susceptible and can be killed off. This is HUGE! The dark side of my diagnosis is that the HER2 Positive Cancer has broken out into fatty tissues (although thankfully not lymph nodes yet). If the Antibody drugs work it means that the HER2 cells floating around in my body will be attacked and die before seating themselves elsewhere and metastasizing. It also means that surgery to take out once infected breast tissue will be easier on me. My doctors say that I’m an ideal candidate for minimalist surgery. Silver lining! For those experienced in genetic research you know that women are at high risk for future cancers if they have specific genetic markers. These genetic tests have been requested and we wait for Insurance Company approvals. The outcome of these tests may change the prior mentioned surgery plans, but we have high hopes my cancer is not genetically marked. As for now, surgery may be the least troublesome of my treatment plans.