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Too much information

Long time, no type . Where to start. My back was sore for a few days from the Marrow Biopsy. Mouth sore raged for most of the week. Started getting better on Sunday--Yeah!. We went to Dr. Cohen on Thursday to go over the results....Drum Roll...

Complete Pathological Remission.

Which means, they could not see any cancerous cells through the flow cytometry and the good cells do not have any of the chromosomal abnormalities.

Which mean, as Dr. Cohen said, I am in the best possible shape going into the transplant. It kinda sucks hearing I am in remission but there, per the statistics for this type of Leukemia, probably still bad cells around somewhere. The pathologists can't see 'em. I could be really cured but there is no way to tell except wait. If I wait and forego the transplant and have a second occurrence, my odds, which are already in the 60% range, drop even more. Why you ask? Odds are the cells that come back are resistant to one or more of the chemo drugs. The ones I have used so far are the best ones. If they can not get me into a second remission, then the transplant becomes quite risky. So, regarding the sucks part I mentioned, I need to get the BMT--provided I have a match.

On to matching. After the meeting with Dr. Cohen, Marcy and I went to the Kimmel Cancer Center at Johns Hopkins. What a palatial estate for cancer care. 2 year old building. 5 floors, all dedicated to cancer treatment. After I registered w/ the program, I received an orange Hopkins credit card looking ID badge with some bar codes on it. I use this to "sign in" when ever I go to Hopkins. At the main sign in station, I get a printed itinerary of my appointments. At each appointment, I swipe there to let them know I am ready. When I am done w/ the appointment, I swipe out. I can imagine the bean counters looking at levels of service.

I went to the phlebotomy area, gave three vials of blood for the immunological typing (HLA Typing). I will get the results back in 2 to 3 weeks. Many of the typing tests are pretty extensive. So, in 2 to 3 weeks, I will know where my sister stands for a match. We are looking for a 6 out of 6 match--nothing less. Ms. Coleman at Hopkins said they have only done 1 transplant with a 5 out 6 match for ALL with the Phila. Chromosome. Fingers crossed.

Back to my remission. If my sister is not a match, they go to the various marrow registries around the world. This could take some time. The one book I have indicated a typical 3 month wait. Given that I am in great shape now, I can wait. I suspect for patients that are not in complete remission or get sick have to roll the dice and take a less qualified match or if no match is found, die.

I am looking at the quality and quickness of my remission as a great sign for the coming months. Hell maybe if there is no match, I wait 3 years which indicates I have a 90+% of being truly cured .

The weekend was quiet. I have been going nuts building out my new machine, which I am on now. It is quite sweet. Wireless keyboard and mouse, 17" flat screen, AMD 2400+, ASUS MB A7N8X, NVidia TI4200. Sweet. I have Patrick/Marcy's machine built now but I am having lock up problems. Also, the CPU fan is dieing. The machine is about 5 years old now so some HW problems are quite possible. I am TuffTesting it now to see if the memorr or I/O subsystem is messed up. I have been staying up to 2 or 3 in the AM since that is the best time to get things done. Kids and Wife are asleep. Watch Matrix twice last night. Man, I can never see that movie too much .

Hopkins called Monday. I have a meeting with Dr. Rick Jones, the Director of Bone Marrow Transplants at Johns Hopkins. Here is the link to Johns Hopkins BMT site.

Here is a blurb on Dr. Rick Jones:

Richard J. Jones, M.D.:

Years experience: 14
Director of bone marrow transplantation at the Johns Hopkins Oncology Center, an associate professor of oncology at The Johns Hopkins University School of Medicine and an active member of the oncology staff of The Johns Hopkins Hospital, which he joined in 1987. He is a grant reviewer and a national committee member for the National Cancer Institute of the National Institutes of Health in Bethesda, Maryland. He has received more than $3.3 million in research grants, published 91 articles in peer-reviewed journals, and written 15 chapters in medical textbooks and authored 84 abstracts. His overall research focuses on improving the treatment of blood cancers and the use of bone marrow transplantation by rapidly translating new knowledge learned from the laboratory to the patient. He is especially interested in the biology of bone marrow stem cells, chronic myeloid leukemia and aplastic anemia.

If anything, he likes to write .

Here is a guideline snippet from the BMT site:

Acute Lymphocytic Leukemia (all)/ Lymphoblastic Lymphoma

Patients must have documented ALL (FAB L1-L3) [Br. J Haematol 33:451-458, 1976] OR
a confirmed Working Formulation histologic diagnosis of lymphoblastic lymphoma.
In patients with lymphoblastic lymphoma, at least one diagnostic specimen
will be reviewed by the JHH Pathology Department.
The disease status at the time of BMT may be: 
1. First* to fourth complete remission (CR) as defined by: 
   a. Complete resolution of all areas of known disease. 
   b. Bone marrow cellularity of >25%. 
   c. < 5% malignant cells in the bone marrow. 
   d. Presence of normal marrow elements (erythroid >15% of total, normal granulocytic
   elements >25% of total and megakaryocytes). 
   e. Peripheral granulocyte count > 1500/mm3. 
   f. Peripheral platelet count > 100,000/mm3 (without transfusion support). 
   * To be eligible for BMT in first CR of ALL, patients must be considered
   at high risk for relapse by virtue of any of the following: 

      - Age < 1 year or > 16 years at time of diagnosis 
      - Philadelphia (Ph1) chromosome positivity 
      - Abnormalities involving chromosome 11, e.g., t(4;11) 
      - Greater than four weeks to achieve CR 
   * To be eligible for BMT in first CR of Lymphoblastic Lymphoma,
   patients must be considered at high risk for relapse by virtue of any of the following: 

      - Age < 1 year or > 16 years at time of diagnosis 
      - Philadelphia (Ph1) chromosome positivity 
      -Abnormalities involving chromosome 11, e.g., t(4;11) 
      -Greater than four weeks to achieve CR 
      -High LDH at diagnosis (greater than 500 i.u.) 
      - CNS, bone marrow or pleural involvement. 

2. Primary refractory disease as defined by inability to achieve a
first CR with at least two cycles of induction chemotherapy


3. First to third relapse as defined by patients who have been documented
to be in CR prior to evaluation but who have >5% blasts in the marrow at
the pre-BMT evaluation and who are asymptomatic, transfusion-independent
and who have a total WBC less than 20,000 at the time of pre-BMT evaluation.
In addition, patients having >30% marrow blasts would need to have either
an allogeneic/syngeneic source of marrow or an autologous marrow harvested
in complete remission. 

Patients with ALL who experience isolated extramedullary relapses will
be considered when remission has again been achieved. Extramedullary
relapse will be considered equivalent to marrow relapse in determining
remission number. However, patients with isolated testicular relapse > 6
months off therapy will not be eligible in the absence of other risk factors. 

Patients may not have evidence of active CNS disease at the time of BMT.  

As you can see, the Philadelphia Chromosome is the main reason why I need the BMT. If I did not have that, I very well could be cured. But that is not the hand that I was dealt. So on with the game! I will never eat a cheese steak again! Screw the Eagles and Phillies! Liberty, Schmiberty!

Since the machine build-out took so long, I have not started on the new Blog interface yet. It is imminent though!

Back to the Dr. Cohen visit. I will be checking back into GBMC on March 17th...St. Patrick's day. GBMC will dye the chemo green for me. I asked Dr. Cohen if it was OK to show up with a six pack of Guinness in me, he chuckled but I am not sure he got the joke. I will stay 4 days, getting ARA-C every 12 hours. ARA-C is the chemo I was getting in my spine. I will also get one more chemo hit in the spine while there. Then it will be up to Hopkins if they want to do some more. On the Hopkins side, I will more than likely get TBI, Total Body Irradiation. Joy Joy. Kill 'em all. Bring the Sledge Hammers out.

Prior to March 17th, Marcy and I are attempting to figure out a manageable getaway. The options so far...and don't laugh:

* Do nothing but definitely chuck the kids. Maybe stare at a blank wall for a long weekend
* ACC Tournament in Greensborough
* New York City
* Vegas
* Disney (We have only been 5 times so far )
* NCAA Tourney. Not sure what round.

New York is the leader. We have friends there. It is close. And my wife LOVES shopping. My mantra. A happy Marcy is a happy Gary . Most of the other options require plane rides and greater logistical management (read baby sitting ).

So that is the update. I will post back, probably on Thursday with the information from Hopkins and Dr. Jones. He will be taking over my health care from Dr. Cohen once I wrap up the ARA-C.


Posted by: Gary on Mar 03, 03 | 7:08 am | Profile


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