This entry is going to be a dry one, since I am still resonating about what it all means. Plus, I've only got another 41 hours of feeling human left, and it is a beautiful day!
We have made a choice, and believe it or not, we are going to Indiana! It was a difficult decision to make, but I hope, the right one. The team in Indiana, led by Dr Einhorn, was made famous by treating Lance Armstrong, and has done more of this than anyone in the world, including Memorial Sloan Kettering in New York. The only place on the west coast that has any experience with treating advanced germ cell tumors is City of Hope outside of LA, but the doctor who would be in charge will be out of town for another three weeks, and I don't have that long. Both the team in NY and the team in Indiana recommended high dose chemotherapy with autologous stem cell transplant. I poured over the published and soon-to-be published results from both teams with the help of my mother and my uncle, who is an Evidence-Based Medicine researcher. After weighing many variables, we decided to go with the data and have it done at Indiana. A ~60-80% cure rate beats ~50%, especially when the sample size is 2-3 times as big (depending on stratification).
The first month will actually be done inpatient at Stanford, where I will get one cycle of standard dose vinblastine/ifosfamide/cisplatin, starting this Friday and lasting five days. The point of this is threefold: to hit the cancer immediately, to hit it with something that won't take the insurance company two weeks to approve (seriously!), and to induce my body to pump hematopoietic (blood-producing) stem cells out into my blood, so that they can be collected and stored away for the future. I will be going to Indiana on May 13th for the stem cell "harvest" and the first of two rounds of high dose carboplatin and etoposide, after which my stem cells will be reinfused to reconstitute my immune system, which will have been decimated by the chemo. The dosage that they will be giving me is something like four times what I have received in the past, which I can tell you fills me with joy. I return to California around June 1st, and then head back to Indiana on June 13th for the second round. After recovering for 4-6 weeks, I will likely need surgery to remove any residual masses, but if the past month is any indication, that decision will not be a clear one.
There are other reasons to be in Indiana as well. I will be severely immunocompromised, and keeping my environment as clean as possible will be much easier in Indiana than in Manhattan. The overall fun level may be lower, but I am not exactly going to be partying all night long, and can't eat out anyway, so the lower overall stress level is probably more important. My mother, who will be taking care of me, will have an infinitely easier time of it in Indianapolis. For whatever reason the timing is better with Indiana's protocol: it is nice that the first month can be done at home, and also great that even if we go ahead with the surgery, I will likely get back to health in time to start school again where I left off in November.
My new doctor, Larry Einhorn (the only Jew in Indiana?), with Lance Armstrong
Wednesday, April 18, 2007
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16 comments:
Josh,
I found the clinical trial of bevacizumab (Avastin) for testicular cancer in Indiana on the NCI webpage listing clinical trial. The trial number is NCT00393861, AVF4003s, IUCRO-0166.
The doctor conducting the trial is your doctor – no surprise! There are at least two problems. First, you are not eligible because you have not failed high dose chemo with carboplatin and etoposide. Second, it might be a randomized study.
If you wanted to try Avastin outside of the clinical trial, Einhorn might be reluctant to add Avastin to your regimen because the chemo drug that will be tried in the trial- oxaliplatin - is not from what you will be getting.
Still, it cannot hurt to ask Einhorn about adding Avastin offlabel. Maybe he is not familiar with the German case in which they used many of the same drugs Einhorn is planning to use.
john from CHORI
looks like you have found a great solution. fingers crossed!
dear josh,
i knew i recognized einhorn's name from somewhere! sounds like you are in good hands with the doc, the facility, and with your family. i am thinking of you a lot, and sending strong immune system thoughts to you. how about some acupuncture?
love,
zpora
John,
Can you email Josh the German case? Thanks
Mom
Dear Josh's Mom,
I re-sent the information about the German case to Josh at his USC email address. You can probably access the letter in the Annals of Oncology 2006 17(3):531-533 directly at
http://annonc.oxfordjournals.org/cgi/content/full/17/3/531. One thing I don't understand is why they reduced the chemo dose to 25% of the prior doses: "The second to fourth cycle of this individual treatment approach was applied with 25% dose reduction and led to a further decrease of ߭HCG and the former liver metastasis nearly completely diminished in CT scans ." I would think you would need to hit the cancer with the highest tolerable dose plus Avastin to achieve the greatest efficacy. The list of references at the end of the letter looked interesting. Also, you might look at the Uro Today, the European journal at www.UroToday. Click on Testicular Cancer in the right-hand column.
John from CHORI
Dear Josh's Mom,
I forgot to re-send the information about Genentech's program for people whose insurance won't cover Avastin, though I don't know if they can do this for off label prescription.
Uninsured or Underinsured Patients
http://www.avastin.com/avastin/patient/crc/reimbursement/index.m
The Genentech Access to Care Foundation was established to help qualified uninsured or underinsured patients receive proper medical treatment. Consistent with the Genentech mission of addressing unmet medical needs, the Genentech Access to Care Foundation may be available to help those who are not able to obtain Avastin for financial reasons, including:
• Patients who lack medical insurance coverage and do not qualify for government medical programs
• Patients who have non-government insurance but have been denied coverage*
The Genentech Access to Care Foundation is a prescription drug replacement program. Patients must be treated in the United States to be eligible for the program.
If you have questions about your insurance and Avastin coverage, please talk to your doctor about Single Point of Contact, or SPOC.
John from CHORI
It is a cold night in Germany and I am looking at your pictures from Grenoble which are hanging above my desk.
I am thinking of a you a lot! Sending hugs, strength and love from Europe!
Georg
hey josh,
i wish you the best of health (and a little luck, too). i'm glad you'll be able to spend some time in palo alto, in addition to indiana. it's a nice place, don't worry. ;)
i'll keep you in my prayers...
Adam
Josh,
On May 13th Pablo & I will be celebrating our 1 year anniversary & most definitely thinking of you. That date can only mean good things. Huge hugs,
Marta
Dear Josh,
I hear your coming to the mid-west! Although I understand it doesn't have the bright lights and all night bodegas of Brooklyn, I'm excited to have you within visiting distance. I promise to come to Indianapolis and would love to host you and your mother in Chicago if you end up getting away for a day or two I've been reading your blog for months without posting but you are always in my thoughts. I'll try emailing you directly after May 13th to get an idea if a visit is possible.
representing from the mid-west with much love,
rachel f.
Whaddya mean Indiana will be no fun? It's full of....umm...Indianans! Yeah! And what's more fun than Indianans?!
Seriously though. What's more fun than Indianans?
Be well cuz. I'll find out if/when I can come visit while you're still in Palo Alto...
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