Kicking Cancer’s Butt … Post-Surgery News

Dawne post-surgeryPicture 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.

Dawne post-surgery poster

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

Why Neoadjuvant?

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:

  1. Sets the stage for possible minimalist breast surgery to include lumpectomy + bi-lateral breast conservatory/reduction (including the possibility of saving the nipples).
  2. Provides a testable indicator to ascertain whether the HER2 cancer is being responsive to drug treatments before removal of tumors.
  3. Increases the probability of pathological complete response (pCR) – meaning the tumors are 100% gone at the point of surgery.
  4. Increases the probability of disease-free survival (DFS) and overall survival (OS).
  5. 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!

Standards of Care … per NCI/NIH


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:

  1. Four preoperative cycles of pertuzumab in combination with trastuzumab and docetaxel, followed by 3 postoperative cycles of FEC;
  2. Three preoperative cycles of FEC alone, followed by 3 preoperative cycles of pertuzumab in combination ith docetaxel and trastuzumab; or
  3. 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.


Perjeta … Still on My Mind

… The weekend is upon us and I find myself still wondering.

If you have been following the Perjeta story, you know that my medical provider is requiring me to self-insure when I already have complete insurance coverage.  They told us that Perjeta will cost us between $60,000 to $72,000 outside of my regular insurance coverage.  Too funny, these people claim they have never received payment for Perjeta in the history of their practice, yet somehow its ethical to tell me that $500 advance payments each cycle are somehow a “reimbursable deposit.”

I’m glad I spoke to William first before giving them the credit card info – he just knew something wasn’t right.  William told me right up front that he was concerned that the requested $500 payment per cycle would unknowingly acknowledge a contractual obligation to self-insure Perjeta.  How this happens is beyond me.  This drug is fully covered according to the insurance company.  What good is insurance when non-medical types at an approved medical provider can tell a doctor we don’t care.  To be clear, this is not an insurance company problem. Their Case Manager has been wonderful.

I leave you with this.

Imagine yourself hearing that you are insured to receive a drug that will give you a 75% chance at completely killing off 4 tumors before surgery and if successful eliminates the need for follow-up chemotherapy.  Then, have a someone without a medical degree step in at the last-minute and withhold that treatment unless you agree to sign paperwork that essentially risks bankrupting you, all the while your insurance company fully covers this regime and has for a year.  Such a scenario isn’t exactly the peace and tranquility one needs!  Do you see what I see?  A big clinic with decent profits fed by hundreds, if not thousands of patients. A business that won’t take a contractually required financial risk, all the while trying to pressure me into doing just that?  I’m the little old lady who paid for insurance to cover this and they’re the pro who can’t figure out how to enforce their provider agreement with their insurance company customer.

I have faith though that things will work out.  If we can’t find a champion through the second opinion process, we will seek to stretch our credit line.  Although saying so is sharing personal matters, we are getting ready to list our high country home and selling this will relieve financial pressure on us too.  It is something we planned to do anyway, just more motivated now.  I’m especially encouraged by the research William has done.  He says Perjeta as “a standard of care” can be added in at Cycle 3 and completed in Cycle 6.  It would be at the lower end of the 4 – 6 cycle protocols listed in the NCCN guidelines, but clinically effective.  William also mentioned that my current 2-drug regime which includes one Anti-HER2 drug (Herceptin) was part of another 3-drug standard of care for many years which had a 17% chance of getting a 100% elimination of my tumors.  This means my current 2-drug regime may be holding its own against my tumors while we search for a way to introduce Perjeta.

Monday morning is big.  Getting a Second Opinion scheduled is critical.

Perjeta … No! Final Answer!

The truth is finally out and on the table!

Recall the medical provider’s representations (to our Aetna Case Manager) that the magical $500 was now to be part of our 2014 deductible – these were misrepresentations.  At the close of business yesterday, during our scheduled conference call, we got to the bottom of it all.  The medical provider’s Clinic Director officially notified us that they will not change their self-insurance policy on Perjeta.  Yup, it’s been about the Perjeta all along.  Such a shame!  Our insurance carrier has repeatedly made it clear that the medical provider has no compelling need to do this, yet they are leaving this requirement in place. William has worked so hard to make this a win-win solution.  He worked everyday over weeks to resolve this satisfactorily with my medical provider, but to no avail.

Sad day!  We simply don’t have the money to self-insure this bill.  No Perjeta for me!

So … Cycle 2 Chemo is scheduled for January 7, 2104.  I will go forward with the 2-drug treatment regime, while we looking for other options.  This news is very scary for me.  Their doctor prescribed Perjeta and as a national standard it is the most effective drug treating HER2-positive Breast Cancer.  Get this!  According to the clinical tests submitted to the FDA in support of its approval, Perjeta (when given in conjunction with the other drugs they are already giving me) completely shrinks tumors before surgery in about 40% of the cases.

William and I picked up copies of my medical records today.  We will take the weekend to consider our options.  For sure, Second Opinions are next.  This is terrible.  Who knows this stuff.  We’re innocent patients, not attorneys.  I know in my heart of hearts that things will work out.  The Perjeta protocol is far to powerful to not be available somewhere where my insurance company is not made to be the bad guy, especially when that insurance company has documentation on-line explaining the very advantage I spoke to above.

Head-up and moving forward with my hubby, we’re walking hand-in-hand to a successful end to this mess!

Perjeta … The Tennis Match Continues

William writes:

If you are following the Perjeta Tennis Match, here is the latest news.

Dawne’s AETNA Case Manager called  Monday, December 23, to let us know that she spoke with the medical provider’s Site Manager. There is an apparent change of heart at my doctor’s office, but with a twist. The original request for a $500 “deposit” against a $60,000 to $72,000 personal bill based on their false assumption that AETNA would not pay for Perjeta has been retooled. Now the medical provider wants $500 as an “advance payment” against what they think is a $2,000 “2104 Deductible”.

Me thinks the medical provider’s Site Manager tells AETNA, and thus us, one thing and her corporate policy makers another playing a dangerous gambit that no one will figure her out. It is beyond strange that a similar request has not been made by her as pertains to Dawne’s “2013 Deductible”. I don’t dare bring that point up and invite yet another last minute request for money.

Christmas Eve day and Christmas Day gave us a respite from what is beginning to feel like a job – working through the medical provider’s disjointed policies and procedures.

Today, Thursday, we sent off a FAX to Dawne’s Chemo Doctor – once again we are asking him to educate the medical provider’s finance people on standard insurance practices. Dawne’s “2014 Deductible” is $0.00 because she prepays AETNA $2,000 taking advantage of our government’s pretax medical provisions.  She has an AETNA PPO FSA HRA PLAN. Ok, it may seem like rocket science – but seriously, the medical provider is in a business dominated by payment from insurance companies. They ought to know this stuff backwards and forwards.   Dawne’s deductible is already met – by design.

Dawne has a doctors appointment on Friday am. Hoping our FAX to him explaining the above motivates him to get internal matters straightened out so he can order the Perjeta. I think I’ve mentioned before, he is an employee in this larger corporation. He must be as exasperated as I am. Dawne really needs this magical drug, without it I fear her chemo treatment is not adequate. This is an awful place to be since Dawne would have chosen surgery over chemo had it not been for the availability of Perjeta.

Perjeta: Still Battling Denial of Service

For those who have asked, the Perjeta financing saga goes on.

William continues his work with the AETNA Case Manager to sway my medical provider to change their misinformed house policies pertaining to charging a $500 deposit per infusion of an AETNA approved and covered (i.e. scheduled) drug since December 2012.  I’ll leave explaining the details of this wild and wooly project for William to relate once the matter is satisfactorily resolved.  If I wasn’t feeling so disjointed and pestered by the side affects of the Chemo drug, the ride on this roller-coaster wouldn’t be near as nauseating.

William has properly identified and resolved the business reason for the financial staff at the medical provider not getting paid for Perjeta over the last year – wrong diagnostic and/or billing codes – and yet they have been sticking to their guns.  Something like – it’s their policy to make the patients assume 100% of the financial risk (responsibility) for this drug until AETNA miraculously starts paying for it.  Mind you, re-submitting their standing claims with the proper billing code and letting me move on without signing our financial life away for this FDA and AETNA protocol-required drug isn’t something they see as doable.  Well, at least not as of last Friday evening.

William tells me today, Monday evening, that AETNA believes the medical provider is moving towards correcting their course.  We hope to know more this coming Thursday, the day after Christmas.  Keep your fingers crossed.  January 7th is coming up quickly and the Perjeta infusion is critical – like I’m not able to miss it without jeopardizing the continuity of my pre-surgery treatment regime.  I’m betting on William. If anybody can he can make this happen, one way or another, he can.

My advice to those having to walk this road in the future is to take your team with you.  The natural conclusion is that once Chemo starts you will need someone at your side to help with the financial/insurance matters.  I’m here to tell you gathering that team right from the beginning and having them join you as early as the post-diagnosis telephone call has huge advantages.  There is so much to remember and do.  For sure, once “chemo brain” sets in and the general fatigue hits having help is critical.