We ended up with the Hilton Garden Inn Downtown Cleveland near the ball stadium. Sounded good. Unfortunately, we got a late start and didn't arrive until almost 11:00 after the long drive. Todd was exhausted. We went to our room and realized it reeked of cigarette smoke. We went back to the desk and tried to explain that Todd was a cancer patient, already didn't feel good and had a cough and we couldn't stay in that room. They informed us that it was a smoking room and that they couldn't move us because the entire hotel was full (which I find hard to believe on a Tuesday night). They only offered to spray the room with a scent or put in an ozone filter machine, but that it would take hours! I told them that neither option would rid the room of the smell plus he was exhausted and needed to lay down now. They refused to give us a refund saying their hands were tied because we booked through Priceline. I appealed to their moral obligation to do the right thing but once again said there was no other room. We also challenged the hotel for having smoking rooms in the first place when Ohio has been smoke free for over 15 years! They said that since they were renting out a private space they could get around the laws and that they plan on getting rid of the smoking rooms when they remodel in the future.
I don't mean to offend smokers. I have loved many people who were smokers, most of them having died from the side effects. However, this is the reason why the laws are in place in Ohio: to protect non-smokers who have no choice in the matter. Especially sick people and children. Most smokers I know are conscientious and would gladly smoke outside. But this business wanted to make money on those smoking rooms they were having trouble selling.
We said that Priceline listed the room as a non-smoking room, but the hotel insisted that they tell Priceline it may be a smoking room and it is Priceline's responsibility to tell consumers. I tried calling another hotel we had stayed at before. The entire hotel was non-smoking and they had a room at the Cleveland Clinic rate available but Todd was too exhausted to go. So we had to endure a night of smoke smell and no curtains. I called the GM but got voicemail. He called me back the next day while we were at the Clinic to offer us a free room but I refused. I didn't want a free room then. He said it that every single room in the hotel that night was booked. I congratulated him and told him they apparently didn't need our patronage if they are that busy on a Tuesday night. I told him I don't want to stay anywhere that is not smoke free and I said with one in three people getting cancer it was likely he or the men working that night may have a sick family member and may be in our shoes one day. We showered, dressed, and tried to get out of there as fast as possible. I didn't want to walk around smelling like smoke all day!
When
we arrived at the Clinic, Todd had to
start his day of appointments with a few tests on his lungs, including a pulmonary
function test. We saw the pulmonary
physician. He asked several questions
and reviewed the results of his prior lung CT in addition to the morning’s
tests and said nothing looked suspicious.
He had no idea what was causing Todd’s cough. He prescribed him some cough medication, but
that was it.
Next, was lab work. They
were going to give him at least one unit of blood even if his hemoglobin wasn’t
below 8.0. It had been hovering around
8.1 -8.3; not enough to get a transfusion but still not enough to give him
energy. Originally, the trial nurse didn’t have a
treatment appointment scheduled for a transfusion, but on the Monday before, I knew he
wasn’t feeling good and would likely need it. So, she was able to add it to the
schedule. It was a good thing, because
he did need it. His hemoglobin had
dropped to 7.5 and they were going to give him 2 units. We were waiting for the type and screen and
results to come back when Sam the trial nurse and Dr. Hamilton came in to see
him. We were disappointed that all his
counts had once again dropped even more:
Whites had dropped to 1.46; ANCs to .95, and
platelets to 31,000.
She
thought it was likely that the trial drug AG-221 was losing its
effectiveness. There was just no other
explanation. I was confounded when Dr. Hamilton started talking about other
options: Revlimid (for patients with Chromosomal Deletion 5q), and even harsh
chemo and a second transplant! I didn’t
understand why we were discussing this now; neither one of these last two options would have a
high success rate at this point. I
thought we should have at least Revlimid to try and/or going back on Vidaza
again before bringing those options up. She was also concerned that he
was starting to lose a little weight.
While
getting his transfusion, the respiratory therapist came in and gave him his
Pentamidine Breathing Treatment and another trial nurse came in for his
EKG. He had to miss two other
appointments, because of course, everyone was running behind and we couldn’t
get to either. One was to receive more
immunizations. I wasn’t upset about missing
this one. I didn’t think it was a good
idea anyway; to be getting more immunizations with his counts so low.
We
drove through thunderstorms and finally got home around 9 p.m. I was hoping he would start feeling better
right away, but the next day, he felt faint and couldn’t drive home from a
haircut. Luckily he was near his mother’s
house and stopped there to take a rest and then drove home a couple of hours
later. That day and the next day he
still felt puny and didn’t get out of bed much.
This
concerned me, so on Thursday, I put a call into the doctor and she called me
back on Friday morning, August 12. I
told her about Todd’s lack of energy and nausea. I also asked why she brought up chemo and a second
transplant. She said she just wanted to
discuss all of his options. She said that if Todd
started needing transfusions more often, that she would consider
taking him off the trial drug and starting the Revlimid, but not until
then.
By
Friday afternoon, I was concerned and decided to call Dr. Eytan Stein at
Memorial Sloan Kettering in New York City. He saw Todd before he started on the
AG221 and I knew he had a lot of trial experience with the drug. I wanted to pick his brain about other
options. I left a message and by that
evening, he called me on my cell phone at home.
We discussed Todd’s case and current condition, the great response he
had with AG221, and then the steady decline of his blood counts. He was surprised at Todd’s great results with
the drug, but then said that they had noticed that some patients who stopped
responding to AG221 who had the IDH-2 genetic mutation, often developed an
IDH-1 mutation in addition. For these
patients, there was a new trial drug AG881.
He asked me to have Todd’s bone marrow biopsy, doctor’s notes, and latest
genetic panel sent to his office for him to review.
I
sent an email to Sam, his Trial Nurse at Cleveland Clinic to request they send
the information to Dr. Stein.
Unfortunately, they hadn’t done a genetic mutation panel since May 2015,
so they would have to wait until his next scheduled bone marrow biopsy to get
this, but she sent what they had. We
were charged $45 for this request, but I will pay it happily. I decided last year that I would do whatever
it takes, including seeing the best doctors, traveling to any hospital to help
him.
I
talked to Sam on August 17, the following Wednesday and told that I didn’t want
to step on Dr. Hamilton’s toes, but that I really wanted to hear what Dr. Stein
had seen in his trials and practice that could be of any help to Todd. I also asked her to call in blood work
orders, as Todd was still feeling poorly and I feared he needed another
transfusion. She called them in for the
next day, Thiursday, so if he needed a transfusion, he could get it on Friday before the
weekend. Stubborn Todd however, refused
to go then. He wanted to wait until
Monday, August 22, 2016 to go have his blood work done that way they could use
it for his trial draw and wouldn’t have to repeat blood work scheduled on
Wednesday August 24, for his trial draw for Cycle 18, Day 15. Well, that was a mistake, one he admitted
later. He felt horrible all weekend. He
didn’t drive, leave the house, or get out of bed. The Olympics were on TV, so that kept him
entertained in bed between naps. By
early Sunday night, his cheeks looked red so I grabbed the thermometer! He was running a low-grade fever or 100.3;
enough to go the emergency room. He
refused to go. I conceded as we both thought it was just a neutropenic fever. We kept an eye on it and it was down to 99.6
before bed.
In
the morning, he took a shower and his temperature was normal. I took him to Soin Medical Center for a nurse’s
visit in the Cancer Center there on the 4th floor at the appointed
time of 8:30 a.m. His nurse also felt
that he had waited too long to come in and thought he looked especially jaundiced
since he was so pale (low hemoglobin).
She said that she wasn’t going to let that happen again and scheduled
him for another blood draw to check counts for next week, August 31, 2016. I
was glad for that. After waiting almost
2 hours since we arrived, we finally got his counts back:
Hemoglobin
was a low 7.0. Whites 1.0. Platelets 22,000 (transfusion of platelets
needed at 15,000) and ANCs at .7 (neutropenic at .5).
She gave him all the necessary warnings about
his care: Careful with hot showers because of getting petechia spots, bleeding while shaving,
etc. When she went to schedule the
transfusion, she came back and said she set it up for the next day, thinking
that was what he would want. I was upset at this! I told her that he needed the transfusion
TODAY! And that we were not leaving without one; he couldn’t
wait. Todd was so sick, he didn’t feel
like arguing with her; so I did! She
told us that it would take 3 hours for the type and screen, longer to get the
blood ready, do the transfusions, and that we wouldn’t be done til 8:00 p.m.
that evening. I told her I didn’t care
and questioned why she didn’t do the type and screen when she drew blood. He had already told her that he knew he was
going to need a transfusion. We had
already been there for 2 hours! She said
she can’t type and screen for blood type until the initial blood results come
back and she gets orders for the transfusion.
To me, this could have been done at the same time; this is what they do
at the Cleveland Clinic and I told her so.
Long story short, I was so glad that I took him and told my boss I would
be late. If not, I know he would have
went home and waited the next day. Then,
he would have had another day of feeling bad and getting up early again.
It didn’t end up being as bad as she
thought. I wheeled him done to the Universal
Care Area and they checked him in right away and got him a bed. I made sure he ordered
lunch, then I went into work for a few hours.
They had the first unit to him by 1:24 p.m. I went back to the hospital about 4:20 and he
was finishing his second unit. We were
out of there by 5:00 p.m.!
This
is why the caregiver needs to be present to help with the decisions that the sick patient don’t feel like dealing with. He didn’t
want to argue with the nurse; he didn’t feel like it! But I did!
He told me later that he was glad that he didn’t wait until the next day. And unknown to the nurse, we were out 3 hours
earlier than her prediction!
That afternoon, I
talked to Sam, his trial nurse at the Cleveland Clinic and let her know his
numbers and that he received 2 units of blood.
She said that she was feeling pretty sure that he was losing his response
to the AG221 and would talk to Dr. Hamilton.
She was also concerned with his low white and ANC counts and would also
discuss putting him back on his Cipro antibiotic as a preventative
measure. After talking to Dr. Hamilton,
Todd was ordered to take his Cipro 2x a day and we were told that Dr. Hamilton
was going to talk to Dr. Stein at Memorial Sloan Kettering to discuss Todd’s
case and the option of taking him off of the trial drug AG221 and putting him
on Revlimid.
The
transfusion seemed to help. He was able
to get around yesterday and even drive.
I am feeling a sense of urgency to get his medication changed and was
greatly relieved that the two doctors are going to talk.
The trial for AG881 is only
available at 5 US locations: New York, Chicago, Boston, Aurora Colorado, and Texas.
We won’t be able to find out if he eligible until he has the genetic panel
processed on his next bone marrow biopsy at the Cleveland Clinic at his next
appointment on September 7, 2016. Then, it
may take a few weeks to get the results back.
I’m hoping in the meantime that they can start him on Revlimid.
Did
I mention that Revlimid (Lenalidomide) is on the market already and that it is
very expensive? According to Wikipedia,
the cost for one year’s use was about $163,381.00 in 2012. (Wikipedia, 2016). Drugs.com
quotes a 10 mg tablet, the starting dose for MDS patients at $16,457.14 for one
month’s dose of 28 tablets! (Drugs.com. 2016).
I’m praying we will not have to pay all of that between insurance and a
request to the drug company, Celgene, to buy it at a reduced price. Of course, there is no generic available.
I'll post after blood work next week. Until I continue with my mantra: Whatever it takes!
For
More Information:
Alsumidaie,
M. January 2, 2015. “The Cost of Saving
a Cancer Patient’s Life” Applied Clinical Trials. Web. Retrieved from: http://www.appliedclinicaltrialsonline.com/cost-saving-cancer-patients-life-analysis-celgenes-revlimid
Celgene.com.
May 2015. “Celgene Patient Support for Revlimid” Web. Retrieved from: http://www.celgenepatientsupport.com/revlimid-patient/
ClinicalTrials.gov. August 23, 2016. “Study of Orally Administered AG-881 in
Patients With Advanced Hematologic Malignancies With an IDH1 and/or IDH2
Mutation.” Web. Retrieved from: https://clinicaltrials.gov/ct2/show/NCT02492737
Drugs.com “Revlimid Prices, Coupons and Patient
Assistance Programs.” August
8, 2016. Web. Retrieved from: https://www.drugs.com/price-guide/revlimid
Wikipedia.
Lenalidomide (Revlimid). August 24,
2016. Footnote 2, 2012. Web. Retrieved from: https://en.wikipedia.org/wiki/Lenalidomide
