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| Today is our 25th Wedding Anniversary September 21, 1991- 2016 |
PERSONAL NOTE:
It was a whirlwind courtship, but today we celebrate 25 years of a life together that has brought us many blessings and challenges. I would like to wish we could have another 25 years together, but none of us are guaranteed a tomorrow. No woman could ask for a better husband than Todd. He worked hard and has always devoted his life to God and his family. Cherishing every day and praying we have many more years together. So thankful our marriage was blessed with the greatest 3 kids we could ever hope for.
maximum tolerable dose. (n.d.) Segen's
Medical Dictionary. (2011).
Retrieved September 21 2016 from http://medical-dictionary.thefreedictionary.com/maximum+tolerable+dose
GETTING TO NEW YORK FOR TREATMENT:
Trying to get Todd to New York on a
budget is proving challenging. I’ve done
it once before, and I’m going to have to do it often if he gets accepted in the
trial for AG881 at Memorial Sloan Kettering (MSK).
At first, the receptionist for Dr.
Stein at MSK told me that Todd would have to come in two separate dates: one
for the consult and another for the screening and by the way, Dr. Stein was
only in on Mondays and Thursdays. I told
her that we had seen the doctor before in a similar situation when he was
getting screened for AG221, and that we were able to have back to back
appointments, one day for the consult and the next day for the screening so
that we could do it all in one trip. I
explained that we were coming from Ohio and why should we have to come on two
separate occasions and have to schedule 4 flights instead of 2! This
was Thursday, September 15, 2016 when she called to schedule Todd’s first
appointment set for Monday, September 26, 2016.
I called back the next day and tried to convince them to let us have too
appointment dates back to back. She said
she would give the message to someone on Dr. Stein’s team. I didn’t hear back from anyone that day, nor
Monday morning. So, I called back Monday
and reiterated the circumstances and said I never heard from anyone. She said she would send out another message
and have the doctor or someone on his team call me back. His trial assistant, Emily called back later
that afternoon and said of course we only needed to make one trip and that we
could do everything in one day! She said
they make this exception for patients who travel long distances! Hello?
Why didn’t the office person tell me this to begin with?
There are still a few concerns about
being able to keep the Monday morning appointment there. First, it is at 9:40 a.m.! That means we would have to get up very early
and drive to Cincinnati or Columbus to get on a Corporate Angel Network Flight
(CAN), if one is available and can get us there that early with a 45 minute
drive into the city! Corporate Angel
Network cannot request a flight until 3 days prior to departure. We can’t go up the night before because none
of the corporations on the network fly on the weekend. I won’t hear back from CAN until Thursday or
Friday at the earliest to see if they are able to secure us a flight.
Second, MSK is waiting to confirm
that they can add Todd to the new cohort of the trial which opens on that day,
Monday, September 26. They have been
reviewing the current cohort and there can be delays if there are any
concerns. Emily is supposed to call me
back and let me the status of this.
COHORT: A group of persons or animals of the same species with a common characteristic, set of characteristics, or exposure, who are followed for the incidence of new diseases or events as in a cohort for a prospective study. (Segen’s Medical Dictionary, 2011).
Third, getting lodging once everything
is confirmed is also on hold. I hate to
book a hotel room until we get the first two confirmations. I tried to get the social worker at MSK to
work with the Hope Lodge there in New York City to reserve us a room. However, after hearing back from the social
worker today, we were informed that we would need a minimum stay of 3 days of
“treatment” before we would meet the criteria for staying. Since we only need one night this time, it’s
a no go. I did tell her that we may need
to stay 3 days later, once the trial starts, but it won’t be often.
From what I gleamed from Emily, Todd
would have to start the trial with a Day -3 scenario, like he did with the
AG221 trial. This is the part where they
experiment taking the medication with or without food and then do hourly blood
draws for 10 hours. I remember these
days from the last trial with dread!
Talk about a long day, especially for Todd, in his current condition of
severe fatigue. After the first week, we
would have to return weekly for the first month. After the first month, appointments every two
weeks for the first 4 months. Then, just
monthly appointments! This is a much
easier schedule than with the AG221 study at Cleveland where Todd had
appointments for every two weeks for the first year! That was crazy; but, you do whatever it
takes! Todd was doing so well on the
drug, we hated to complain!
None of this preparation can happen
fast enough. Todd continues to struggle with fatigue and lack of appetite. The local oncologist wanted Todd to start
coming in the day before transfusions to get the CBC and type and screen. This
is supposed to give the blood bank a day to obtain and prepare the blood
products ahead of time. Plus, they have
never liked the idea of making Todd wait for hours for the blood to get to Soin
from the blood bank.
Dr. Hamilton, in Cleveland, did not
want Todd to wait 7 days to get a CBC because his hemoglobin was so low the
last time they waited a week. Arrangements
were made for him to go in late Monday morning, September 19, to get the CBC
and type and screen done and to have blood drawn for a special myelo-mutation
panel that would identify all genetic mutations, not just the IDH-1 or
IDH-2. Dr. Hamilton wants to use this as
a tool for finding any other studies that Todd would be eligible for, based on
the mutations he has.
The results of the CBC were
disappointing. Less than 5 days from his
last platelet and blood transfusions, his counts were so low that he needed
another 2 units of blood and 1 unit platelets again! His hemoglobin was at 7.5; platelets at
12,000; Whites at 1.1; and ANCS at 0.6. They
ordered his blood products for the transfusions set up for this morning, Tuesday,
September 20, 2016 at 7:30 a.m.! This is
very early for Todd. It took the nurses
a good hour and half to get him situated in his Universal Care Room and have
the blood brought in. He didn’t have to
be there until 6 or 7 pm today, but he was still there until 2:10 p.m. It still took him about 7 hours to get the
transfusions. I’m not sure if it was
really any better for him to come in two days, but I guess it was better for
the hospital and staff and maybe the blood bank, I don’t know.
I think we have decided to put our
house back on the market again. A
realtor came to the house and we will be in repair and clean-out mode now for
some time. Apparently, the inventory for
houses in our area is low, but the turnaround time from listing to selling is
averaging almost 300 days according to her graph report. I can’t imagine
keeping everything “show-ready” for up to 10 months! The whole prospect feels every inch of me
with apprehension, but I’m doing it for Todd’s peace of mind. Less stress in keeping up our big house and
its expenses. He worries about the
future and my ability to keep everything up on my own. Goodwill, Beavercreek Bargains, Plato’s
Closet, here we come! I know it needs
done; I just don’t have the mental or physical energy and the heart to do what
it takes. I can’t give in to
sentiment. Even more depressing is
finding somewhere to move that isn’t a major wreck. God Help Us!
I mean that sincerely and earnestly.
NEW DEVELOPMENTS:
This news is crazy, so hang on. I received a call late yesterday from Emily,
Dr. Stein’s trial assistant at MSK. The
meeting that the trial study team was supposed to have with the drug company on
Monday, September 19, was unexpectedly postponed for a week with no explanation. It just wasn’t the meeting at MKS that was
postponed, but the meetings at the other four U.S. trial study locations
too.
The meeting was supposed to cover the results of the first cohort of the Phase
I trial of AG881, which was a dose expansion phase, defined as “A progressive
increase in the strength of any treatment (e.g. a drug or radiation dose), to
improve its tolerability to maximize it effect.” (Free Dictionary 2009).
This is when they give different patients
different amounts of the drug: 50 mg, 100 mg, 200 mg, 400 mg, and 600 mg until
the maximum tolerated dose is established.
MAXIMUM TOLERATED DOSE:The highest drug dose that can be given without causing adverse side effects in most recipients. (Segan’s Medical Dictionary, 2011).
The second cohort of a Phase I, is
usually a patient expansion. We are hoping to get Todd a slot in this part of the trial. Now everything is on HOLD! The
appointment for Monday, September 26, 2016 with Dr. Stein has been cancelled
too. We are hoping to go instead on
Thursday, September 29, 2016, IF the news and instructions from the drug
company from the rescheduled meeting that Monday allows new enrollees.
I guess speculating doesn’t do much
good, but I can't help it. This could be good news or bad
news. They could have reached the
maximum tolerated dose and have decided to go on to Phase II. This would be good news since Todd would not have to be exposed to dangerously high dosages, but it could take weeks or maybe months to get the
new Phase up and running. The worst case
scenario would be that the drug didn’t work at any dose for the initial set of
patients, but this would be highly unusual.
The best news would be that they just needed to reschedule the meetings for a
week and the drug company will call the Trial Centers/Hospitals and let them
start pre-screening for an additional number of new patients for the
next cohort or Phase.
The problem for Todd is time. He needs to get on a treatment soon. The two-week “wash-out” period of being
drug-free in preparation of starting a trial will end tomorrow, Thursday, September
22. Even though I feel desperate to get
him on some kind of treatment, we can’t jeopardize ruining this wash-out period
and not being ready when next trial slot opens up.
So, we wait. Wait to hear from Dr. Stein's team and continue to get Todd any transfusions whenever he needs them. Prayers for the situation to be resolved and settled would be appreciated, as well as for protection for Todd against getting an infection or virus.
References:
cohort. (n.d.) Segen's
Medical Dictionary. (2011).
Retrieved September 21 2016 from http://medical-dictionary.thefreedictionary.com/cohort
dose
escalation. (n.d.) Medical
Dictionary. (2009). Retrieved
September 21 2016 from http://medical-dictionary.thefreedictionary.com/dose+escalation
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