I flew to NYC again on Thursday July 18th. Then met with Dr. Gerecitano (why do all my doctors have hard names?) and the staff of the Developmental Therapy Clinic at Memorial Sloan Kettering. Yeah, “Developmental Therapy Clinic” not the place you want to find yourself.
I have to admit this was a very nice experience. Really friendly staff and a much more define process than I have seen. Reminded me of the BMT process, but way more organized. Check in here, blood draws here, dr office here, chemo here, all explained and organized very well. Also people checking on you using your first name. But that could be because cute girl at the front desk loved my name so every time she saw me that day (I was there in from one room to another for hours) she yelled out my name and say I love that name. Made me laugh and now I think everyone there knows my name.
I also had a wonderful conversation with the head nurse after talking to the doctor. The drs are assigned for one day a week there. But the same 4 nurses will always be there. As I have learned in this journey, the nurses are the ones that know what is really going on and how the system works. They are the ones that can really answer how you will feel and what to expect. She broke down the schedule, insurance hurtles and such. She was really great kind of a commination of knowledge and kindness. Really a step above anything I have dealt with yet. Really great though she was still not nurse Lisa Sipple (No one is that amazing.)
I thought the meeting was an interview to see if I would quality. Really it was just to sign consent forms and move forward with insurance.
I guess I was already accepted and they want to move very quickly.
There is one thing that concerns my mom. The trial is run by dr. Gerecitano so he has somewhat of a conflict of interest in suggesting this trial to me. I have passed the trial by my other docs to see how they feel about it. Dr Prystas thought it seemed like a good trial and I am waiting on Md Anderson and the BMT team. Still is a slight concern.
Here is the basic Plan (this is the very short version for those that get email don’t really read it and keep asking me questions I already wrote about.) (calling you out John G and Zach)
- Insurance approval (next two weeks)
- Move to NY (soon, very soon)
- Tests: Lots of Tests (after approval. Probably first week of aug.)
- Chemo and Drug ( 2 Months to 6 Months)
- Remission (After that…)
- Move back to SLC (Right after Remission)
- Allogeneic bone marrow transplant. Half Match Transplant. (right away if possible)
- Live? (Something like that)
Most of the drugs will be paid for by the drug company. But the tests are not and any emergencies are also not paid for. This will add up quickly.
Of course you all know I have shit insurance. So…I do not know if I will get approval. The head nurse made it sound like most insurance companies like the trials cause it means they have to pay less overall. Other wise I can take the drug not on a trial (it is FDA approved and they then have to pay the whole amount. All about numbers)
Hopefully that will happen this week. July 22-26
There is also a chance that they can take my Utah Medicaid. That would be amazing and a huge help.
Cause the Arlo fund is not going to last very long. (with all these flights it is not going to last very long at all) Might be time for another Frisbee golf/concert in the park. Day.
Move to NY:
I have to fly back to SLC drive then drive to Moab. Get my car tuned up. Pack up what I need for up to 6 months in NY. Then drive out to NY from Moab.
I think I have conned one of my best friends to road trip with me out there. It takes about 3 days but we might try and find some fun along the way. West Virginia rafting or maybe PA? Eric and Kasia I am taking about you! Anyone have other suggestions of what to do one a across the country road trip? Largest ball of yearn?
The other hard part is the commute from my cousins in Long Island. Marc has been incredibly kind and graciously helped me out so far by letting me crash at his house. BUT It is about an hour and a half to my appointments…each way. It was hard on me this week. I do not know how it will be when I am sick. (that a lie, I know how it will be! It will suck!) The hard part will be coming back, And really hard on hot days or in winter. Remember it could be 6 months.
So I am looking to rent something closer to the city for a couple of months. The cancer center is right across the street from the metro station which is nice. I might also get a hotel for the couple of times on the bad days. Or maybe have a car service bring me in and out of the city on that day.
So if any one knows of a furnished 1-bed room place that I can sublet around Manhattan, Brooklyn, or Queens please let me know.
None of this is going to be cheap. Though does that really matter that much right now? Working on spending lulu’s inheritance as it is.
Unfortunately the center needs a new pet scan and CT scans and they have to be taken on site. (which I think is actually BS.) but that means I have to come back out and do all these. The issue is that it will be more expensive in NYC than in SLC since I’m still on Medicaid.
I am not sure what tests will be needed but I am assuming it will be about the same as for the first BMT. I am a little concerned I might have to do the Bone Marrow Biopsy again. That one is not to fun.
The Trial: Chemo and new drug.
This is a Phase 1 trial that is close to moving to a phase 2. The trial will combine an FDA approved Lymphoma chemo with a drug that makes cancer cells more recognizable to the Chemo’s and to my T-cells. Then killing more of them. That is the best I could understand. Probably messed up some part of it.
The Chemo is Brendamustine. And the drug is ABT-888. (yeah it is so new it does not have a name yet)
The schedule is to do two days of Chemo, all outpatient. On Monday and Tuesday. First day will be about 5 hours long. Second day will be 10 hours long. On Days 3-7 I will take ABT-888, which comes in pill form. I still have to come in for Blood test to make sure my blood counts are good. These tests will happen every other day at the center.
There will be blood tests every Monday after that for 3 weeks. The next cycle will be shorter for the Chemo days.
This will continue for 2 cycles then I will do another battery of test to see if there has been any progress. If I am clear of the cancer I will go right into the Bone Marrow Transplant. Otherwise I will continue the treatment for another 2 cycles, then more tests. This could take up to 6 months.
They want me to be in NYC (or so) for most of this. Though I will have to steal away for my brothers wedding in Sept. But that probably will be it. Sorry Zach and Sarah.
Allogeneic bone marrow transplant
Once I get back to a remission the plan will be to move back to SLC and go straight into a Bone Marrow Transplant. This will be the more “life changing” kind of BMT. I will take someone else’s stem cells and use them to build a new immune system. The biggest advantage of this transplant is that the new immune system will not recognize the cancer and attack it more aggressively then my body is currently…Obviously. The disadvantage is that the new immune system can also attack the rest of my body not knowing it is supposed to be there. This is called Graft vs. Host, and can be fatal.
My sister was not a match for me with the Bone Marrow. But my brother is a half match. With Hodgkin’s there have been some new studies that show a half match is actually better. This has been even truer with Siblings in the study. The BMT was pretty excited about the half match. Not really sure what that all means for me.
This process will not be fun and my life will never be the same. The dr put it into a rule of thirds. 1/3 of people have no problem and go about things basically normal. 1/3 are really sick for a year+ and slowly recover, and 1/3 get really bad graft vs. host and are sick for a long time with it being potential fatal.
This will be rough. No crowed areas…ever, immune suppressing pills everyday, no river trips, always part of “the hospital system,” constant monitoring for the rest of my “life.”
So the next two weeks basically could be the last time I fell healthy in a long time…if not the rest of my life.