Archives: May 2003
Sat May 31, 2003
Decisions, Decisions (work in progress)
Well, the time has come (actually lack of time now) for me to make a treatment choice. I have been in remission for 4 months now. My disease has a high relapse rate which usually occurs 3 to 6 months. If I relapse, I am much, much worse off. If I had to choose today, my only option is Hopkins since no suitable donor (perfect or mismatch) has been located.
Seattle, in the early stages of their searching have found 2 matches that are 6 out of 6 (1 Canadian, 1 US). They need to further type these people to see if they match the rest of the 6 antigens and asscoiated alleles. This process could take months: find them, see if they are available, get samples, HLA typing, consulting, then transplant.) Seattle feels I should continue aggressive chemotherapy until these people are typed out to see if they are suitable. They say, best case, 2 months before a transplant could happen.
Hopkins feels I should have had the haplo-mini tranpslant a month ago.
Personally, I do not think I can wait much longer. Every journal article I have read draws a coorelation between time to transplant from 1st remission to general outcome--longer=worse.
Here are the Pros and Cons of the options as I see them. I will keep adding to this list as I gain information and the Drs. answer my questions (I have been a royal pain in the ass to these Drs. in my quest for information)
Hopkins: non-myloblative, haplo Identical mini-transplant
Mechanism of treatment
Relies on Graft vs. Tumor (Leukemia) effect to kill the cancer and the rebooting of my chimeric immune system to stop severe Graft Vs. Host Disease.
25 minutes to hospital.
My marrow is not destroyed so if I reject the donor, I can recover.
Relatively light chemo and 1 dose of radiation.
Graft vs. host Disease appears to be minor so far in the new protocol.
Door open for traditional transplant if I relapse.
Leukocyte infusion from donor if I relapse.
Phase II study has 5 of 6 patients alive with 1 relapse (longest alive so far, 9 months).
Experimental, Phase II study.
Phase I study had 20 of 26 patients die.
Graft vs. Host Disease.
Only short term data. 9 months out of survival.
Unknown how well Graft vs Tumor will work against ALL, Ph+.
Seattle: Ablative, full, mismatched transplant
Mechanism of treatment
Relies on intense chemotherapy and radiation to kill my marrow system; including cancerous stem cells. Since it is myloablative (destroys everything in the marrow), the donor marrow is all that the patient has to restart a new blood system.
Well known and studied protocol.
If patient survives, good chance of being cured.
Seattle is the epicenter of Bone Marrow transplants (400 per year).
50% mortality related to the treatment (since a mismatched donor is used).
Graft vs. Host Disease.
High chemotherapy and radiation with the associated sicknesses.
Fatal infections possible since there will be no immune system for several weeks.
Blood and Platellet tranfusions needed while marrow is wiped out.
Travel to Seattle.
Hospitalized for 4 to 6 weeks.
In Seattle for up to 3 to 4 months if no major complications.
If I reject the donor marrow, it is fatal.
Wait for a perfect donor
Mechanism of treatment
If a perfect match is found, then a traditional, myloablative transplant would be done. Seattle has 2 possible matches that are typed out to 6 out of 6. The remaining typing needs to be completed which would follow that same course as before: locate the donor, see if they are available, get sample, HLA confirmatory typing, consult, transplant. ETA best case, 2 months. Probably more like 2 to 4 months.
Perfect match anonymous donor is my best option given my sister is not a match.
Well known and studied protocol.
60% or higher cure rate.
If perfect match found, transplant can be done at Hopkins, not Seattle.
Waiting for the perfect donor may cause me to relapse which is bad. Resistent Leukemia cells are dominant and much more diffcult to get into remission.
Continued consolidation chemotherapy to try to keep me in remission which is toxic to my body.
With continued chemotherapy, Treatment Related Mortality (TRM) climbs since my body is beat down.
General trend: as time to transplant grows, mortaily climbs.
more to come . . .
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Wed May 28, 2003
The update: There is no update
Not too much new info to report, but I noticed that we have not added any new entries in over a week and a half. Hopefully no one started to panic out there!
Gary and I (sans kiddies) just returned form the Sunshine State (Florida) back to the Damp State (Maryland) We had a great time in Orlando -- went to the usual haunts, Disney and Universal Studios. Our friends Jim and Marcelle met us down there and were wonderful company! Sorry to report that the weather was hot and sunny and I am somewhat sunburnt. Very relaxing and fun and we feel recharged to get on with making the impossible decision about what kind of transplant is best for Gary and where to go to get it.
In true RDA/Project Manager fashion, Gary is in the depths of his analysis on this "project" and I'm sure he will uncover the information we need to make an educated decision. My role is just to keep the domestic ship afloat... a daunting task in and of itself.
We should be making a decision in the next week.
Meanwhile, we are off to the dealership tonight to purchase a Honda Oddessy. Yes.... a minivan.
Anyone out there need a Jeep?
Bye for now--
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Sat May 17, 2003
The Germans let us down again
Very quick update:
My potential German match is a 1 Antigen Mismatch--not a perfect match. I believe it is something that the Fred Hutch in Seattle could use. Waiting to speak with them on Monday.
Went to Hopkins on Thursday and spoke with Dr. Jones (not of Indiana fame). Marcy and I feel better about the Haploidentical, mini transplant using my father. He is a 10 out of 12 match. My mom is a 8 out of 12. There is no data on long term success. This approach relies on a couple of things. First, my father is 10 out of 12 on the testable antigenic markers There are also over 120 markers that can not be tested for compatibility. Conventional thought is that since he is 1st degree related, a much larger portion of the 120 would match then in an anonymous match (like my German mismatch). Dr. Jones feels that it is these 120 markers that influence the degree of Graft Vs Host Disease. Second, instead of high dose chemo and radiation, we would rely on the donated immune/marrow system to clean house. This is called Graft Vs Leukemia. The chemo is predominantly used as a immunosupressant for my immune system before the transplant then as a mechanism to re train my new immune system to play nicely with my body.
The latest protocol for the Haplo transplant has 5 out of 6 people alive ranging from 3 months to about 1 year out. We got to meet Landon who had this procedure done in December, 2002. He is doing well. His first transplant, autologous (self), failed in relapse. This was his only option becuase there where no anonymous donor matches. He used his sister. He has Non Hodgkins Lymphoma.
Dr. Jones stands by that this is my best and only option. He is deeply against a mismatch, conventional transplant. The Hutch has the oposite stance....of course. He claims that the Hutch had shut down their mismatch BMT program becuase of poor outcomes (read l see dead people) What makes the story more interesting, the Dr. that developed the protocol with Dr. Jones at Hopkins left a year or so ago and went to the Hutch-- Dr. Paul O'Donnell. I spoke with him and traded some emails a few weeks ago. I am going to have a serious conversation with him. The first protocol, and the subject of this paper, has a pool of 13 people; 7 of which have died. The article was submitted January of 2002. I am trying to track down updated stats on the remaining patients.
Dr. Jones coauthored this paper(with several others) and has since modified the protocol. They use a second dose of Cytoxan (Cyclophosphamide) post transplant to "reboot" the chimeric (mixed) immune system. This, according to Dr. Jones, is the KEY; 5 out of 6 are proving this out--engraftment, low GVHD (Graft Versus Host Disease) and remission. This procedure is all out-patient unless I get sick. Landon said it was much, much more tolerable than his first, conventional BMT.
FYI, I met with Dr. Cohen on Friday and there is no evidence of cancer in me currently. Don't get excited. The current state of genetic testing (FISH/PCR assays) can only detect greater than 1 million cells. So, I could have 0 to 1 million cancerous, lymphocytes floating around. They don't know. Given the Philadelphia Chmosome adnormality I have, there is less than a 5% chance I am truly cured. We will never know since waiting could cause a relaspe and then I am in a world of hurt (if that is possible). Remember, the cells that come back have proved that they are resistant to all the chemotherapy to date. Darwinism in action.
So, as eloquently put by Dr. Jones, it is impossible for me to make a informed decision because there is no sufficient, long term data. Mismatch Seattle vs. Mini, Haplo Hopkins. Univ of MD is out since Autologous has poor, poor data for relaspe and I have other options (crappy ones, but options non the less).
Dr. Cohen has voted in for Hopkins. He said 5 out of 6, 1 year out is pretty good. Dr. Jones is convinced this procedure is how all Bone Marrow Transplants will be done in 2 to 3 years. He is a cockey fellow--healthy ego as well.
Dr. Cohen has given me a few weeks without any Chemo. I am going to grill Dr. O'Donnell and Dr. Fero at Seattle, get updated numbers from Hopkins and consult the magic eight ball. Mean time, Marcy and I are off to Disney/Universal in FL this coming weekend. My last hurrah before some form of BMT. We need to make a decision in the next 2 weeks--transplant (which one), or more chemo and wait for a perfect match (not likely).
As always, sorry for the typos and grammar....cut me some slack!
If anyone sees the answer in their pile of mash potatoes, please email me when you get the chance.
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Wed May 14, 2003
Life on a Wednesday night
Not much going on around here. Libby is asleep and Patrick is up on the couch with his father watching Bob the Builder. Bob is HUGE in our house right now. Patrick and I purchased Bob sheets at Target yesterday. Tonight is his first night sleeping in them. Can we fix it? Yes we can! (that should be our new mantra for the leukemia as well!)
Libby can sit up on her own now (mostly) and is reaching for everything -- which makes feeding time an adventure. However, her hair is laying down now which is a completely different look than the "sticky-up" hair she used to have and the back of her head is rounding out nicely... she's really pulling her look together these days. Gary's head is also very round but very shiny. We are saving a fortune on shampoo.
We have a meeting on Thursday to talk with Rick Jones at Hopkins one more time. He is really set on the half-match transplant for Gary, but other transplant docs have made it clear that that is a procedure they would only do as a last ditch effort. We don't feel we're there yet, so we're off to see what Dr. Jones' deal is. Does he need a new guinney pig? Or is there magic up his sleeve....?
We have a follow up meeting with Dr. Cohen (Gary's main oncologist for those of you completely lost in this never ending saga) to see what the results were from Gary's bone marrow biopsy done on Monday. Good results are expected (i.e. Gary still in remission)
The German donor's blood is still in process at Hopkins and we are being told that the results should be in by the end of the week.
We are in the process of transferring the donor search to the Fred Hutchison in Seattle. Since Hopkins is only interested in a perfect match, they are limiting their search in the national database only to those who look like they will be a perfect match. Although this is what we would ideally like, we need to get Gary's search moved to an institution that will look for mis-matches as well. Word on the street is that "The Hutch" is really good about getting donor searches returned quickly. Don't ask, don't tell... it must be that tough Pacific Northwest Bone Marrow Mafia. (can't you picture them in their Birkenstocks, backpacks and cups of coffee?)
Thanks for reading... If so inclined, drop us a note by clicking on the "comment" link below this (or any) entry. You'll need to register if you haven't already done so. We'd love to hear from you all out there!
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Sat May 10, 2003
Back from the beach
Long time, no type. Well, we packed up the family and went down the ocean for a few days. The weather was apparently better down there then in Baltimore -- had a few sunny mornings on the beach and the kids played in their shorts and t-shirts. Our friend Karen and her son Kevin (Patrick's partner in crime) went with us. Libby wanted to bring some friends too, but she doesn't have any yet. Leading up to the trip, when you asked Patrick where we were going he would say "Going Down the Ocean!". Of course once we got to the beach, he still said we we're "Going down the ocean". I don't think he knows we had gotten there.
Good News: We talked to Hopkins on Friday and a blood sample from one the of latest German potential donors is actually at Hopkins and is being confirmatory typed to see if it is a match for Gary. We should know results by mid-week. Keep you fingers crossed. No word back yet on the other donor in the hopper.
Gary goes for a bone marrow biospy (read: ass-tap) on Monday to get what I'm calling a "State of the Union." We met with a physician at the University of Maryland on Tuesday to get a consultation on Gary's options for transplant. Of course now we have his very different opinion to throw into the mix. What was encouraging from the visit is that U of M will do an Autologous transplant if appropriate. This would mean taking out some of Gary's own marrow, putting Gary through chemotherapy and Total Body Irradiation (TBI) and then reintroducing the marrow back in. Hoping that the marrow that was first collected was during a time when Gary's marrow was in remission and is relatively free from leukemic cells (the bone marrow biopsy will give us a good indictation of this). The positive thing about this procedure is that Gary's will not face Graft vs. Host Disease, but he may relapse some where down the line from lingering leukemic cells.
What everyone seems to be telling us in their own way is that a donor is the best odds situation for a cure. We just can't too long for an unrelated donor to appear or Gary will relapse. So think happy German thoughts!
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Fri May 02, 2003
There's No Place Like Home
Gary is home and feeling pretty good (Nausea quotient 2 out of 10) We even ventured out for Chinese food -- the kids are at "Gran Camp". Gary is thankful to be sleeping in his own bed without any strange hospital smells or odd beeping noises.
On the drive home we started planning a getaway trip "down the oshun, hon" and the deed has been done. We leave next Tuesday the 6th and come back Staurday the 10th. We're staying at the Holiday Inn on 17th and the boardwalk for any of you out there who want to join us. The pub crawl will be limited, however, as the kids aren't big drinkers. (Or us anymore for that manner) The weather will be hovering around the 70s, so if anyone is tempted to come, let us know.
Today's New Hope: Toes in the sand next Tuesday and Thrasher's fries next Tuesday night.
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Thu May 01, 2003
Still feeling sick...
Gary is still at GBMC trying to kick the nausea. It seems as if the problem is the Methotrexate chemo they gave him last week is still lingering in his blood stream and this is what is making him sick. Usually the methotraxate is flushed out after 48 hours but Gary has had an unusual reaction to the drug and he can't seem to let it go! The only way to get the drug out is via fluids, so he is getting nonstop IV fluids until he can keep some fluids down by mouth. The good news is that he had some Cup o' Noodles and some orange Gatorade this afternoon and as of this writing I believe it is still with him. (But what a spectacular sight if it comes back up!) Keep your fingers crossed that we are at the end of the nausea and Gary can come home tomorrow. He's been feeling like crap for over a week now and is missing out on all this fabulous weather.
The update on the potential donors: Last week we recieved a call from the case manager at Hopkins to tell us that all four of Gary's potential donors were "unavailable". This was a crushing blow to us and very frustrating to have waited over a month only to hear that these folks were, for reason undisclosed to anyone, unavailable to be tested at this time. HOWEVER, we received another call from the case manager later that day to tell us that two more donors had magically appeared in some German database. They are currently trying to contact these donors to see if they can come in for more testing. More waiting for us. More hope.
The plan to do a half-match transplant from Gary's father is still on the options board. They have had success with this kind of transplant at Hopkins and this may be our go-to option if we do not get results back from the donor testing in the next few weeks. We are treading a fine line as to when Gary might relaspe again -- we can't wait too long, but we really want to wait to have all our options on the table. Very tricky. If Gary relapses, they will have to get him back into remission before transplant and this can be somewhat difficult -- best to make our move before he relapses.
My newly formed philosophy is that each new day brings us new hope -- sometimes you have to get creative and look hard for it, but it's there somewhere.
Today's New Hope: Cup o' Noodles and Gatorade. Goooooood.
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