Making a decision that we can come to peace with

5/10 – 5/23

Medical events: 

Teri:

5/9    Blood count and platelet transfusion

5/10   Endodontal app’t to evaluate dental abscess, put on antibiotics

5/10   Consultation in Chicago with U. Chicago AML expert

5/12   Blood count followed by platelet transfusion

5/12   Oncology appointment here @ MCW

5/12-14  Consultation in Baltimore w/ BMT oncologist @ Johns Hopkins U.

5/15   Blood count – blood counts except for red cells finally normalizing

5/18   Blood count

5/18   Oncology appointment here @ MCW

Dad:

5/11 Dad acute confusion (wandering around looking for a geology class)

5/11 ER visit (day before we leave for Hopkins!) w/ urinary catheter placed

         [What an urgent decision-making challenge this was!]

5/11-15  Placed him in Catholic Homes

5/18   Urinary catheter removed in Urology

5/19   Urology appointment re: bladder dysfunction

5/19   Anticoagulation labs

5/19   Neurology appointment re; spinal tap and brain shunt placement

B:

Driver, companion, medical interpreter & advocate

PICC line manager & flusher

Catheter manager

Long-distance consultations

This was a critical and productive two weeks as we needed to come to a decision soon in order that the identification of the non-matched bone marrow donor and acquisition stem cells could be initiated for a transplant to take place in approximately 8 weeks time.  We completed our three long-distance consults and had an extended visit with Dr. H. to learn of the MCW team’s final recommendations.  As you remember, no matched sibling or unrelated donor amongst Asian Americans or throughout China has been identified.  Therefore, we had to investigate ‘alternative’ stem cell transplants which are second line choices.  Each of the three long-distance institutions that specialize and are the best in one of the ‘alternative’ stem cell transplants modalities that remain viable options for Teri. 
1^st @ Loyola U. – umbilical cord (stem cells expanded) transplant

2^nd @ U. Chicago – AML expert + haploidentical + umbilical cord transplant

3^rd @ Johns Hopkins – haploidentical (5/10 half-matched sibling or child) transplant

4^th curbside consult (indirect advice without patient) obtained from M.D. Anderson expert in AML through Dr. H.

We learned a lot from each of the long-distance consults, especially from Johns Hopkins.  We were ushered into the exam room 30 min early to be unexpectedly greeted by the attending oncologist waiting there with Teri’s chart and records open.  Wow, we won’t expect that to happen again.

We observed a number of things visiting these three institutions. 

1)  Despite the time and expense involved, we felt that it was an important and useful process to hear in detail what our options are to help us make this most difficult choice.  If our choice was a good or obvious one, we would never have had to seek out these options.  Of course, more data and information can be overwhelm you and make the analysis more challenging. 

2)  No one would give us a precise figure on either overall or improved (increment) percent survival following their specific transplant.  Fortunately, for us, Dr. H. had run the national numbers for a 60 year old who underwent each type of transplant so that we had aggregate U.S. data for that type of transplant for Teri’s age, but not by that individual center.  At first I thought it was evasiveness, but as we learned more, even the amongst the 40 to 200 done at each institution, virtually none matched Teri’s exact profile;  age, sex, ethnicity, cytogenetics, translocation (mutation in her leukemia clone), response to therapy … so you can’t individualize it.  Frustrating but true.

3)  Even in BMT world it is competitive.  Interesting, there is a sales pitch, touting the advantages of their specific transplant approach and overall results while criticizing the other approaches. 

4)  We have to relocate to their centers for inpatient and outpatient (within 30 min) for ≥ 90 days.  We can only imagine the disruption in our and Dad’s life. 

5)  It was critical to hear from AML experts for whom BMT is only one treatment modality, not the be all end all approach.  That is, ask a transplanter and they will naturally recommend transplant.  Perhaps the converse is somewhat true too.

6) We knew of the daunting mortality of 25-35% from the BMT itself apart from effects of the leukemia.  This high rate gives one serious pause to ponder whether it is worth it.  This mortality occurs from:  1) contracting a routine infection (e.g. respiratory virus) during the 4-6 weeks it takes the stems cells to engraft (take hold) – more prolonged with umbilical cord,  2) failure of the stem cells to engraft – higher risk with umbilical cord, and  3) graft vs. host disease due to the HLA (histocompatibility antigens on white cells) mismatch where the donor stem cells attack host tissues.  Only one consult spoke seriously and quantitatively about potential complications as being known from their institutional numbers (Hopkins).  That was very helpful.

7)  We began to learn about alternative approaches if we chose not to proceed with a transplant and to do chemotherapy alone.  Some agents have been used in China.  Others would be used to try to get her back into remission (much less likely 2^nd time around) if there is a relapse.  There is also a 3^rd line of chemotherapy – maintenance – after receiving her induction and consolidation that could potentially continue to maintain her cancer-free.  This maintenance therapy could include monthly hypomethylating (chemical) agents and calicheamin (toxic to cancer cells that was discovered in Texas clay) tagged to monoclonal antibody that attaches to leukemic white cells.  Unfortunately this is a latter approach is new and has little data.  Once again, Teri has to climb out on a limb.

Differences in our approach to this decision

Teri approaches these momentous decisions with a strong dose of intuition and gut feeling, and hope.  I try to approach these decisions based upon data (more probability here) mixed in with concern for quality of life.  We balance each other.  Unfortunately we don’t any single good choice.  And, we don’t have precise prognostic data on her individual outcomes to base our decision.  We only for sure know the high risks.  Philosophically, we can go for a transplant ‘cure’ with a high risk of BMT-caused mortality and a very poor quality of life for 3 months or more OR we can stay with chemotherapy alone, have a better short-term quality of life but risk a high relapse rate.  The aggregate survival for everyone (not just Teri’s profile) at 3 years on chemotherapy alone for the group is 30% and the equivalent survival for the two transplant options are 40+%.  I won’t bore you with all my probability machinations, but if you survive the transplant you may have a 10-20% higher cancer-free survival but only 10% overall survival because so many are lost during from the transplant itself.

What would you choose?  What would you do?

Here is how the recommendations went.

Loyola                BMT expert:  proceed promptly with expanded (extra stem cells grown) umbilical cord transplant

Chicago              AML expert:  chemotherapy alone

Hopkins              BMT expert:  proceed with haploidentical transplant

MD Anderson      AML expert:  chemotherapy + maintenance

MCW team         Leukemic and BMT together:  chemotherapy + maintenance

Our decision – it’s like throwing the dice

Teri and I have decided to stay with chemotherapy alone with maintenance chemotherapy and not proceed with the transplant.  The decision would be different if she had a matched donor.  She doesn’t.  She has a good response to chemotherapy and feels good and hopeful about the future.  She believes that she has a chance for a cure on chemotherapy, and if there is a relapse, that there will be new therapies and a potential for a matched donor.  This is the better for her short-term quality of life and for the new grand bambino.  She was leaning strongly this way before we went to Hopkins and before we heard the MCW team consensus and the MD Anderson input.  She feels it.  I think it is a choice we can be at peace with.

Next steps

Teri is feeling good this week and is at home.  As her white cell counts have come up she has been able to eat out twice.  She will be going into the hospital six days for her 4^th round of chemotherapy on June 7^th.  But before then she will attend the wedding of her niece Jennifer in North Carolina and give B’s dad a 90^th birthday party with many of his former grad students and friends here in Milwaukee.

Miscellaneous

Teri read about eleschomol a new agent in Phase I (early) trials in AML in the May 17^th New Yorker.  It is a Russian-synthesized compound that works by a unique mechanism.  It transports copper into the mitochondrial (energy furnace within each cell) and increases production of reactive oxygen species (unstable radicals) that in turn induce apoptosis (programmed cell death) and kills those cells.  In essence, it overheats and kills the leukemic cells in the test tube.

Rob & Sharon came from Connecticut visit us.  He is my former college roommate from Old Nassau.  We were both swimmers in high school and our personal bests were the same.  Despite seemingly similar swimming promise, somehow he has morphed into a 4X Ironman finisher and Master’s World Champion in 1, 2 and 4-man boats.  What vitamins is he taking? 

Readers Digest is doing a combined story on Teri and Kailee Wells, the Chinese adoptee from Milwaukee who found a matched donor in China five years ago and was successfully transplanted.  We will let you know when that issue comes out.  Teri is putting a challenge to OCA (Organization of Chinese Americans) national office to meet a goal of 4,000 registrants before her anniversary Feb 10, 2011.  Drives are still the best way to get people registered.  Teri knows how time consuming it is to do one and is much appreciative of all her supporters who are helping to find that special ONE.

Dad is approaching has 90^th birthday next week and we have a number of friends, Chinese artists and Chinese art history protégés who are coming.  The recent vicissitudes in his health and orientation are leading us to consider assisted living options.  Especially, since Teri still has a long road and can no longer be his full support person.  Another difficult decision that is weighing on us.

Keep in touch with Teri and I as we move beyond shock and awe, killing cancer cells, to deciding to bone marrow or not, and finally throwing the biggest dice there is and betting on chemotherapy alone! 

Everyone, KICK BUTT!

With much love and gratitude.

B & Teri