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A Plan.

by arlo tejada 23. July 2013 05:19

A Plan.

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)

Insurance Approval:

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?


Commuting?

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.


Tests:

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.

Tags:

Arlo's Cancer Story | Arlo's Cancer Story

Just an update

by arlo tejada 15. July 2013 08:39

Just an update


I have been trying to get this update out for weeks now. I have pages and pages of different starts. Different thoughts and feelings.

But….

In the end I think I just need to get something to you.

Here are just the nuts and bolts.

I will start after the last biopsy I got in May. I started doing the Brentuximab drug right away. Which was the drug that got me in remission to start with.

I started that on May 10.

The treatment went well and no really issues.

I had assumed or hoped that this same drug would get me to a remission again.

MY plan was to take 3 cycles of the drug then do radiation to the stomach and go from there.

I was supposed to do the second cycle on May 31st. I called up to double check the time and it turns out the dr office had forgot to order the drug. I was pretty upset about this. It really messed with the schedule at work along with a lot of other things.

I ended up doing the treatment on Tuesday June 4th.
playing on cat
To break up this little straight to the point update. I did do one very exciting and fun thing in between. I went on a private Cataract Canyon trip with several of my close friends including my brother. This also happened to be over my birthday. To add to the excitement I took my 9ft “mini-Me” boat through with my friend Zacharia. The level was pretty big probably around 23000 Cubic Feet Per second. To give you prospective I know several commercial companies pull their 18’ row boats at 15000.

BD2We did end up flipping in one of the bigger rapids Big Drop 2 ½ also known as the “claw.” We ended up having to hand paddle to shore RIGHT above the next rapid…Satan’s gut or Big Drop 3. Pretty exciting. The rest of the day we play horseshoes and told stories /lies on the beech. I am pretty sure I have never had a better birthday.

I had another Pet Scan on June 25. And then a meeting with Dr. Prystas and then a meeting with the radiation doc.

The pet scan showed more active spots of cancer all around my stomach and intestines. The activity was very small. But in a lot of places. Like a shot gun blast.

Since the Brentuximab did work this time we did not do another cycle.

There was really no plan when I left the dr office that day. Talk of clinical trials or radiation and that the only real “cure” would be another more invasive bone marrow transplant.

I met with the radiation doc later that day. He was very young and rather indecisive. He also pushed for the BMT. He was very against radiation to the stomach area in such a large area.

Not a very good day overall.

I quickly called my mom and we started setting up appointments with the two largest lymphoma hospitals in the country. MD Anderson in Houston and Memorial Sloan Kettering in New York. Along with potential ones in Chicago, Minnesota, and Colorado.

We had already received a second opinion from MD Anderson about doing the bone marrow transplants in the first place. This hospital also see’s 28000 lymphoma patients a year. So they have seen more relapses that are similar to me than anyone in SLC and would have better idea of what has worked in the past.

We also set up a meeting with the BMT team because I thought it would be a good idea to talk with them again.

A Long Week:
We were able to set up a meeting with MD right way. These guys were incredible on the phone. Really customer service oriented. Not what you are used to when you deal with hospital. We had a ton of information before we got there. Including the issues with my insurance and such.

I flew from SLC to Den to Houston on southwest. My Mom met me at the airport for the flight from DEN to HOU. It was her birthday. I know there is no place she would have rather been but it did make me feel like shit. One hell of a bday present.

MD Anderson is like the Disneyland of Cancer hospitals. This place is immaculate. Thousands of volunteers running around serving coffee, helping people on where to go, there was a person playing music in the entrance it had a concierges desk even and an aquarium. Really an incredible facility.

Check in was also fast and efficient. I cant say enough about my experience there.

We met with the doc for a long time and went over a ton of studies and options.

He stressed that my treatment so far was perfect and that I should not blame anything on my treatment so far.

He really broke the studies and went into the ones he thought would work best for me. Really the reason why we went there. He also stressed that to get a “full” cure I would have to do a BMT.

arloWe flew back to SLC and met with the BMT in LDS hospital the next day. It was very informative also. The dr we met with had strong opinions about all the studies some he really liked and some he really disliked. The whole thing was very informative. It also made me more comfortable to do this BMT. Still not excited about it but…

I took a couple of day off for the 4th to head up to park city with friend and relax and not thinking too much, just play.

I flew to NYC on Saturday. We decided to go earlier to hang out with family. We had a bunch of BBQ’s and fun while we were there. We met with the dr on Tuesday July 9th. Sloan was nice but nothing like MD Anderson.

Very similar to the meeting with MD Anderson. We went over a lot of clinical trials. Unlike MD, Sloan had a lot of open trials going on.

He suggested one that was close to finishing up Phase one and almost in phase 2. Which is better for me. It also had one Hodgkin’s patient go into remission from the treatment. (not many Hodgkin’s patients are in studies and they only allow in 3 patients at a time so this is a good sign)

I came home on the 11th.

Now it is decision time. We still have potential appointments with other hospitals. But I think we are leaning to the Sloan one at this point.

I talked to  dr. Prystas in SLc and she thought it looked good. Also seems right in line with what most of the others where saying.

Another big reason for using Sloan is that it might be able to take my Medicaid. Which seems crazy to me but would be a huge financial relief. Though the drug and direct meetings will be covered by the study. Test and emergencies are not.

And the fact that I have tons of cousins around the hospital helps makes moving To NYC vs. Houston a lot easier. Especially if I have to be there for almost 6 months.

fishing with aRloThis journey would be so much harder without the help and uncompromising love of friends and family. First with David Everitt and his family to just give me their SLC condo for the first sets of treatment. Then Dasch who just let me moving into his basement for 6 month even though I had never met his wife Megan up to that point. (and probably more important Meg letting me move in) And now my cousin Marc is letting me move in with almost no notice. It is so so nice to not stress housing and just work on the treatments.

So Now

I fly back on weds to NYC for an entrance interview, which will be a lot of tests and such. None of which is covered in the study. I will be there for about 9 days. If I qualify I will fly back then load up my car and head out for the time I need to be there.

They do not really want me leavening after I start the trial but since my brother is getting married in sept I will have to leave at least once.

I have a more…emotional update I am working on but I don’t know when I will finish so there you go.

Sorry it took so long. I will try and do another one once I know more details about the trail such as how long I will be there, time between treatments and such.

Thank you all
Arlo


BDAY

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Arlo's Cancer Story | Arlo's Cancer Story

the Last Cancer update or second to last update

by arlo tejada 10. April 2013 16:08
So I started to write this update months ago after my last treatment in Salt Lake.  I finally, finally am getting to this. Only because I have my “final” PET scan on Monday. So this might jump around a bit.
 
Lets get to the details.
 
I finished my final.. Last forever complete.. end all/the one/  whatever you want to call it . I finished my final treatment of SGN-35(Brentuximab)  on January 8. (I know I should have written then.. but…
 
arloI think that little thing called life got in the way of that….
 
So I have been enjoying Life without treatments, without trips to SLC every couple of weeks, life without PET (well I do have one more (you know for fun)) Scans,  A lot less needles.
 
I can not say I am not looking at the potential of a relapse…Since I started down this path I have had 3 official relapses and lots of little ones. Anyone remember the open heart surgery conversation…just to get to a Bone Marrow Transplant? Boy do I.
 
I am still not out of the woods. The doc gave me 50/50chance of relapsing. The bone marrow folks still REALLY REALLY want to do the allogeneic stem cell transplant.  They are pretty sure the cancer will come back…
 
 I think I was pretty clear in previous posts about how I feel about this. I would rather die than have the type of life that goes with this transplant.
 
So I am just hoping for the best.  They (whoever they are) count cancers in 5 year windows. So the next five years are the big ones.  There is little doubt that a cancer will kill me eventually or some side effect from the chemo or radiation.
 
Things have been going really well for the past year. With each day really better than the last. It is odd to think about how I felt and where I was at even just a year ago. As each day went by I felt better and better and thought I was fully healed, but looking back I realize how weak and struggling I still felt.  Both physically and mentally. Even as late as August I was still really struggling.

It is amazing to think it was a little over a year ago that I started taking a drug that saved my life.(Wow that is kind of hard to write.)
 
I have my PET scan on Monday. I really am not that nervous but it still is…there. In my mind. Something I will have to think about for the rest of my life.
 
 
Thank you very much for your support and concern. Though this has been an interesting and sometimes very difficult journey I have learned a lot from it. Not least of which is how graciousness people are in this world. Even on my harder days it is not hard to remind myself how lucky I am for this town, my friends and the family that I have.
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Arlo's Cancer Story | Arlo's Cancer Story