Archives: March 2003
Mon Mar 31, 2003
Can you say 103.8?
I am in radio station territory. They iced me down a hour ago and got 3 tylenol. I broke a sweat and got hungry (have not eaten since Sat.) and a desire to make this entry. The fever spiked at 103.8 but it is now down to 102.4. For the gory details, I got ice packs in my groin area (III-EEEEE), under my arm pits and on the back of my neck.
Waiting for the 9:30 temp. If it is under 102 then I can lose the packs.
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A little ghost writing...
Hey everyone -- In accord with my husband's quest to keep me on the cutting edge of technology (or at least vaguely literate) he has requested that I pen today's entry. Here's the latest. We had to come into GBMC on Sunday night due to Gary's persistent fever and severe back pain. The back pain is now under control. Some folks in the know have hypothesied that the back pain is from the shot of Neulasta that Gary received Saturday last. Apparently the drug lingers until his bone marrow starts to regenerate and then it helps out... and can also cause bone pain in the process.
The temperature is still "kickin" to use a Garyism. At last look it was 102.3 (he's very proud of the .3 part) The fever is no big surprise since Gary's numbers have been knocked down to nothing following last week's Chemo. He's getting broad range antibiotics, fluids, platlets and blood while he's here and we're just waiting for his immune system to recover. We are being told we should be here until Thursday-ish.
Watching O's opening day and the surreal snow storm. Gotta love Baltimore weather.
Leave comments for Gary -- he enjoys reading them!
Talk to you soon...
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Sun Mar 30, 2003
You wanted current events!
I am off to thge Hospital. 101.2 Severe back pain. Feel like crap.
Stay tune for the results.
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Ground assault on my hair continues
Woke up this morning not feeling too well. Mouth is starting to hurt and my hair is falling out again. I guess that is about right when I look back to the first hit of chemo. I have been on antibiotics and antiviral so I hope the mondo mouth sores do not come. I am due to go back to GBMC on Friday for a Procrit shot.
I will add some entries for the last week a little late today but thought the moment was right for my hair update. I figure if any hairy creature can withstand the chemo onslaught, I can. Bring it
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Thu Mar 20, 2003
Still sick. Getting some blue chemo now. Should be released Friday. Need to come back in Saturday for a shot to jump start the white cells.
Got a call from Hopkins which we are making some sense from. There are 4 possible matches. Confirmatory typing needs to be done which could take a month or two. Given the lower number of possible matches, it does not look too good. Typically, if I had common antigens, there could be 50 or greater possible matches. But I am still optimistic. Dr. Jones is looking into the Parent donation since that drug I need for the purging of my own marrow is typed up in FDA hell.
I am pretty doped up on anti emetics so I will have some follow conversations with Dr. Jones and Dr. Cohen to make sure I am tracking.
Talk to you soon.
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Wed Mar 19, 2003
Now this is chemotherapy
Sick as a dog....Only way to describe it. Got my spinal as well which went OK. Have not eaten or drank since yesterday. I am getting Chemo every 12 hours and a new type tonight which I have no intel on yet. Out.
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Mon Mar 17, 2003
Ding-Ding, Round II
Hey all! Back from New York and back in the hospital. This will be quick since I am working on some things before I get my chemo at 5:00 pm (then every 12 hours for 4 days) before I get the dreaded chemo head. New York was awesome. I will put some pics up soon.
No news from Hopkins regarding my match likelihood. I am going to call and raise some heck! Dr. Cohen stopped by and was his usual self. All looks good. I did talk him out of a lumbar puncture (now only 1 this week). My finger numbness and shaky hand was the reason. Some neuropathy is taking place. A mailing list I am on for ALL patients mentioned success with B-Complex to help recover the feeling. That is encouraging.
I will update more tonight after I catch up on stuff and Marcy leaves. We are all well. I feel great (that will change soon
Until I type again . . .
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Thu Mar 06, 2003
Hopkins recon visit
Quick update form the Hopkins visit. My sister, based on the preliminary genetic findings is not a match--the term they used is a disparate match (nothing in common). Interesting news on my new options. Here is the complete list in order of preference:
1. Sibling Complete Match [Not Happening :-( ]
2. Allogeneic Transplant (Anonymous Donor) Complete Match [Fingers crossed]
3. Autologous Transplant (My own marrow, scrubbed)
4. My parents (mini transplant, I need to research)
5. End of options. Game Over.
So, given the list, I am definitely getting a transplant. As we move down the list, the risk grows. Graft Vs Host Disease (GVHD) is the main concern for option 2 and 4 (big time here since I will only be a half match). Option 3 is borderline experimental with ALL Ph+. They have done this in 20 patients. 15 have done well--meaning they are currently alive, in remission for 2 years or less. There is no long term data on option 3. Remember the trick is getting rid of the bad cells when filtering my blood. Here is the crazy catch. The drug that they would use to scrub my blood was made by a company that is now out of business. There is no drug available. Another company is working on producing it but the timeframe is unknown.
The final HLA typing for me should be done by Friday. From this, Dr. Jones can classify me as likely-to-match, so-so chance, unlikely-match (these are my terms). Statistically, the current marrow registries represent the population for White Europeans. He can tell, by my HLA typing, the likelihood of finding an anonymous match. This news should be to me on Friday. If unlikely, I suspect we head to option 3 immediately since I am in a great remission at the moment. If so-so or higher, the waiting game begins...again.
Dr. Jones was much more clear-cut regarding the role of the Philadelphia Chromosome than Dr. Cohen. In so many words, he said the defect is in a stem cell. This stem cell, because of the Ph+ mutation, is immortal through normal life (does not die on its own). This stem cell is highly resistant to chemo therapy. He said there is a less than 1% chance I am truly cured now. He expects me to relapse in 3 to 6 months. 2nd remission is much more difficult to achieve due to the more resistant lineage. We want to get to a BMT as soon as possible while I am in 1st remission. The BMT with the associated Chemo and radiation will kill all of my marrow stem cells-good and bad (remember there are all kinds of stems cells, liver for example).
Physically I am fine for the BMT and in fact he did not find me too over weight
So, regarding the odds game, I am much more unclear. Options 4 and 5 have no long term data associated with it although Dr. Jones seemed pretty optimistic given the results at Hopkins. In fact, they are pioneering the techniques for option 2 and 3. My best bet now is a complete match from an anonymous donor with little GVHD response. We want some GVHD since the donor T-Cells attack any leukemia cells.
Regarding those that want to be a marrow donor. Here is the high level scoop. If you are white, you have to pay to give blood ($50 I think)and get on the list. Why you ask? As I mentioned earlier, statistically, the marrow database is good to go for white Europeans (descendents). If you are anything else (black, Asian, Hawaiian, etc.), you are encourage to register--free of charge. There is next to 0 chance anyone could donate and it would be a match me. I appreciate the offers and I encourage you to get in the registry and possibly help someone else.
There are 12 markers (I thought 6) that they can test. However, there are over 120 antigenic sites that they can not test. The 12 are the biggies, the other guys cause GVHD to varying levels. Provided I do not catch an infection, the risk to me is the GVHD and that is what I would die from--probably liver failure. Not to end on a somber note. It would have been awesome if my sister matched. But I am still encouraged that I have 2 viable options where I thought I had none (Dr. Cohen said autologous is not an option and my Parents as donors was never mentioned). Believe it or not, I am slightly more encouraged since the meeting today than prior. I never really expected Holly would match me. 25% odds way too low
When I get the HLA Profile from Dr. Jones, I will post up the findings. Maybe I will get some nice Italian Gent's marrow. I believe I get the donor's name, if he/she allows, after 1 year. That would be a cool visit.
I will be starting a poll on what everyone thinks caused my leukemia. My personal vote is my Diet Pepsi habit. I figured Pepsico is a nice sized company to sue
Untill I type again . . .
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Mon Mar 03, 2003
Too much information
Long time, no type
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
* 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
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.
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