I know it’s been a while since I’ve posted, I wish I could blame it on the holiday season, but I’ve been fighting one illness after another and just can’t seem to get the brain power or energy to do much of anything, and forgive me but this post is going to be rather short as well.
I arrived at BI yesterday ready to get great scan results, start the next cycle, and hopefully get some relief for this respiratory/fever thing that I’ve been fighting. I did get an antibiotic for the illness, even though it is thought to be viral, having a cold puts me at risk of getting something more severe, the antibiotics will reduce that risk. Treatment was held because of the cold and will begin next week assuming my white count is back up and I’m feeling better.
I had a ct scan this past Monday, December 17th. The scan showed growth in most of the tumors, but no new tumors have appeared. Even though there was growth, it wasn’t enough to eliminate me from the trial. The new cycle will begin next week and hopefully these next two cycles will be illness free and the trial dose will show success in the next scan.
On a happier note, the port infection is believed to be gone! Cultures were taken yesterday to be sure.
From our home to yours, we wish you the happiest of holidays!!
UPCOMING APPTS:
Thurs. 12/27: Trial Cycle 3, Day 1
Friday, December 21, 2012
Saturday, November 17, 2012
Port Infection Torture Continued
Sorry about the delay in posting.
My last blog was posted on Sunday, 11/18, at which point I was waiting for the results of multiple tests and a plan of action (everything came back ok). Instead of getting answers, it seemed as though more questions were being brought up. I was released from the hospital on Wednesday, November 14th, only after pushing each day for my release. The following issues didn’t help…
The nurses were having trouble getting a blood return from the port, I had another chest x-ray and a flow study to see exactly what was wrong with the port. The tip of the port seems to be up against a wall or vessel which is why liquids flow in but there is trouble getting a return. The line specialist spoke with my surgeon who said that we can attempt to fix it by going in and pulling back on the line a little, but that it will have to wait until I have been off antibiotics for more than two weeks.
Tuesday night I noticed the smallest rash on my hand, by Wednesday afternoon it had continued to spread and dermatology was called. Dermatology wasn’t sure whether it was from an antibiotic that I had received or if it was a viral rash, I was sent for yet another chest x-ray (came back fine). At this point, 4 days later, the rash is over my entire body, including my face, and is Very, Very itchy! Dermatology said that it will most likely get worse before it gets better but it should get better. This rash threw a loop into the antibiotic that I was going to be sent home on, so another one had to be chosen.
The other concern was that I need to be careful that whatever antibiotics and medications I take will not kick me off the clinical trial. I am on a temporary break from the clinical trial for two weeks, I will resume on Wed. 11/21. The reason I am able to return to the study is because I will only do two weeks of IV antibiotics (instead of 4) and then switch to an oral antibiotic with a line lock antibiotic. Which sounded like the perfect plan, but it’s me, so of course something had to make it more difficult.
I was set up with an infusion company, who would deliver me the IV antibiotics and the lock drug for me to administer to myself at home. The first visit was going well until we (the nurse, myself, and John) were unable to aspirate the lock drug that had been placed in the day before (it stays in for 24 hrs). We called the line specialist who assured us that it was not harmful to extract what we could and then flush the rest through, it was just additional antibiotics; however, the question is will pushing the antibiotic through the line make me ineligible for the clinical trial. The trial states that no IV antibiotics can be given while on the trial. The answer to this question is still pending. Without the lock drug there is a higher risk of the port infection returning, which would mean that the line would have to be pulled.
I will say that being able to administer the antibiotics and flushing the port myself is exciting, after watching the nurses do it for years, I actually get a chance to do what I’ve watched thousands of times. The IV antibiotic comes in the coolest contraption. It is a plastic ball that fits in my hand and looks sort of like a hand grenade, once hooked up the ball starts compressing over a half hour and empties itself.
Hopefully things will start to calm down and all will be back to normal when I begin the clinical trial this coming Wednesday. Oh yeah! And I have not had a fever since last Saturday afternoon, which is a big deal!
UPCOMING APPTS:
11/21: All day Clinical Trial
My last blog was posted on Sunday, 11/18, at which point I was waiting for the results of multiple tests and a plan of action (everything came back ok). Instead of getting answers, it seemed as though more questions were being brought up. I was released from the hospital on Wednesday, November 14th, only after pushing each day for my release. The following issues didn’t help…
The nurses were having trouble getting a blood return from the port, I had another chest x-ray and a flow study to see exactly what was wrong with the port. The tip of the port seems to be up against a wall or vessel which is why liquids flow in but there is trouble getting a return. The line specialist spoke with my surgeon who said that we can attempt to fix it by going in and pulling back on the line a little, but that it will have to wait until I have been off antibiotics for more than two weeks.
Tuesday night I noticed the smallest rash on my hand, by Wednesday afternoon it had continued to spread and dermatology was called. Dermatology wasn’t sure whether it was from an antibiotic that I had received or if it was a viral rash, I was sent for yet another chest x-ray (came back fine). At this point, 4 days later, the rash is over my entire body, including my face, and is Very, Very itchy! Dermatology said that it will most likely get worse before it gets better but it should get better. This rash threw a loop into the antibiotic that I was going to be sent home on, so another one had to be chosen.
The other concern was that I need to be careful that whatever antibiotics and medications I take will not kick me off the clinical trial. I am on a temporary break from the clinical trial for two weeks, I will resume on Wed. 11/21. The reason I am able to return to the study is because I will only do two weeks of IV antibiotics (instead of 4) and then switch to an oral antibiotic with a line lock antibiotic. Which sounded like the perfect plan, but it’s me, so of course something had to make it more difficult.
I was set up with an infusion company, who would deliver me the IV antibiotics and the lock drug for me to administer to myself at home. The first visit was going well until we (the nurse, myself, and John) were unable to aspirate the lock drug that had been placed in the day before (it stays in for 24 hrs). We called the line specialist who assured us that it was not harmful to extract what we could and then flush the rest through, it was just additional antibiotics; however, the question is will pushing the antibiotic through the line make me ineligible for the clinical trial. The trial states that no IV antibiotics can be given while on the trial. The answer to this question is still pending. Without the lock drug there is a higher risk of the port infection returning, which would mean that the line would have to be pulled.
I will say that being able to administer the antibiotics and flushing the port myself is exciting, after watching the nurses do it for years, I actually get a chance to do what I’ve watched thousands of times. The IV antibiotic comes in the coolest contraption. It is a plastic ball that fits in my hand and looks sort of like a hand grenade, once hooked up the ball starts compressing over a half hour and empties itself.
Hopefully things will start to calm down and all will be back to normal when I begin the clinical trial this coming Wednesday. Oh yeah! And I have not had a fever since last Saturday afternoon, which is a big deal!
UPCOMING APPTS:
11/21: All day Clinical Trial
Sunday, November 11, 2012
Port Infection Torture
The trial was going as expected, a lot of visits, a lot of
blood draws and some side effects here and there. On the more serious side, I was getting high
fevers and chills that lasted a couple days every time that the port was
accessed for the past month. This past
Thursday they drew cultures off of the port and off of a peripheral vein in my
arm (the IV nurse was lucky enough to find one, it would have been great if it
didn’t collapse after one usage). Friday
morning I received a call saying that the cultures came back positive for an
infection and that I needed to go to the ER immediately and that I would be
admitted for at least the weekend to receive IV antibiotics.
Nothing is ever as
easy as they make it sound, as annoyed as I was with the haste and the
diagnosis, the reality of the situation is even more frustrating. I was processed in the ER right away and was
put in a room, but once there things got a bit more serious, it was at this
time that I found out that several people from a few various departments felt
that my port should just be taken out; I assured them that taking out the port
would be the very last result, only when we are completely out of options. I had the ER nurse call and speak with my
former oncology nurse who assured her how vital the port is to me being able to
receive treatment, and also had her call the port specialist who helped set up
the surgery for my port back in 2010.
The port specialist came to the ER to see the port and access it for
blood work. The plan was to administer
the antibiotic through an IV in my arm, and after searching for a vein and
failing three times, leaving pretty large bruises on my arms, they finally
agreed with me that it should be given through the port. I remained in the ER until 8p because my
fevers kept spiking, my chills were so bad that my whole body was shaking, and my
heart rate had increased too high to move me.
Once things settled down and I was moved into a room things
didn’t get much easier. I have seen at
least a dozen doctors, fellows, and nurses whom I have never met before who
continue to tell me that the teams are still considering taking the port out
and that they are still trying to figure out which antibiotic to keep me on, at
this point I have had a dose of 5 different antibiotics. My
fevers continued to spike until yesterday evening (Saturday) and the cultures
from Thursday and Friday came back positive for an infection. At 7p last night they finally chose an
antibiotic to stick with and that they were going to send me for an ultra sound
of the port to look for fluid or bacteria pockets around the port, and that
today I would go for an echocardiogram because one of the doctors heard a
murmur in my heart and they want to make sure that there is not a buildup of
bacteria on one of the valves. In
addition to giving me the antibiotic every four hours, instead of flushing the
port after usage a combination of an antibiotic and heparin will be pushed into
the port and left in the lines until the next antibiotic dose.
At this point we are waiting for the results of the ultra
sound, echocardiogram, daily blood cultures and to make sure that I do not have
any more fevers. Once all of this
information is gathered and reviewed by the teams of doctors, hopefully a plan
can be made. The latest estimate of my
release is said to be either Monday or Tuesday, but as with everything else,
nobody knows for sure.
Sunday, October 28, 2012
Trial 1 Day 1 & 2
What a long couple of days!
We left the house at 6a on Thursday, dropped Bruski off at his nanna and papa's house for a sleepover, then made our way into Boston. My first 2 vile blood draw was at 8a, another at 10a, another at 12p, then I took the oral meds, the IV treatment was administered over a one hour period, blood was drawn again at 1p, 2p, 4p, and 8p. Unrelated to the medication, I had a fever beginning around 2:30p on Thursday, and I'm still monitoring it today (Sunday), although it seems to be tapering off. Friday was shorter and less of a hassle, we arrived at 11:30a, my first blood draw was at noon, then I took the oral meds, and had blood drawn again at 2p before we were free to go at 2:30p. The docs have me tracking the fevers and every medication that I take, including Tylenol. Out of all of this, including the failed attempts at trying to find a vein and new nurses that have never seen a femoral port, the most annoying part of all might have been the old guy sharing a room with me yelling out prices on The Price is Right; how am I supposed to calculate my guess if you keep yelling your guess over and over again?! I might have been secretly satisfied every time he was way off! :o)
I did get the results of the ct scan that I most recently had. The findings of the ct scan are based on a scan that was done exactly one month prior to this one. The scan showed that there was significant growth in many of the liver tumors, some a little over 1cm, and there is a tumor in my lung that has appeared. Let's hope that this is a fast acting drug!
Monday should be a short day with just one blood draw prior to taking the oral treatment. The nurses did warn us that "there is no normal day", which we know from years of experience, but we can always hope that things go smoothly.
UPCOMING APPT:
10/29: Blood draw & Dose
We left the house at 6a on Thursday, dropped Bruski off at his nanna and papa's house for a sleepover, then made our way into Boston. My first 2 vile blood draw was at 8a, another at 10a, another at 12p, then I took the oral meds, the IV treatment was administered over a one hour period, blood was drawn again at 1p, 2p, 4p, and 8p. Unrelated to the medication, I had a fever beginning around 2:30p on Thursday, and I'm still monitoring it today (Sunday), although it seems to be tapering off. Friday was shorter and less of a hassle, we arrived at 11:30a, my first blood draw was at noon, then I took the oral meds, and had blood drawn again at 2p before we were free to go at 2:30p. The docs have me tracking the fevers and every medication that I take, including Tylenol. Out of all of this, including the failed attempts at trying to find a vein and new nurses that have never seen a femoral port, the most annoying part of all might have been the old guy sharing a room with me yelling out prices on The Price is Right; how am I supposed to calculate my guess if you keep yelling your guess over and over again?! I might have been secretly satisfied every time he was way off! :o)
I did get the results of the ct scan that I most recently had. The findings of the ct scan are based on a scan that was done exactly one month prior to this one. The scan showed that there was significant growth in many of the liver tumors, some a little over 1cm, and there is a tumor in my lung that has appeared. Let's hope that this is a fast acting drug!
Monday should be a short day with just one blood draw prior to taking the oral treatment. The nurses did warn us that "there is no normal day", which we know from years of experience, but we can always hope that things go smoothly.
UPCOMING APPT:
10/29: Blood draw & Dose
Tuesday, October 23, 2012
Approved
I just got word that after the extensive screening process, I have been approved for the clinical trial using SAR245408 in combination with SAR256212. I will begin treatment this Thursday, October 25, 2012.
The trial schedule requires me to arrive at BI at 8am and spend 8-10 hours at there on Thursday for IV dosage, oral dosage, labs, EKG, physical exam, and research blood samples; 3-4 hours at BI on Friday for oral dosage, labs and research blood samples; and 2-3 hours at BI on Monday for oral dosage, labs and research blood samples. This schedule gets repeated next week as well, and then drops down to just the 8-10 hour Thursdays for the following two weeks, before the cycle starts over again. Thursdays require me to fast starting at midnight until my first labs are drawn, then I can eat something quick, and then resume fasting for 2 hours before taking the oral dose, and then I have to fast again for one hour before being able to eat – or more importantly drink coffee! Labs are drawn constantly throughout the day, including at the same time as the IV dose is being administered, I’ll give you a tally after Thursday - it should be an interesting day.
As my nurse, Linda, told me “every approved treatment started off as a phase one clinical trial”; let’s hope this is the next best up and coming treatment.
UPCOMING APPTS:
10/25, 10/26, 10/29
11/1, 11/2, 11/5
11/8
11/15
The trial schedule requires me to arrive at BI at 8am and spend 8-10 hours at there on Thursday for IV dosage, oral dosage, labs, EKG, physical exam, and research blood samples; 3-4 hours at BI on Friday for oral dosage, labs and research blood samples; and 2-3 hours at BI on Monday for oral dosage, labs and research blood samples. This schedule gets repeated next week as well, and then drops down to just the 8-10 hour Thursdays for the following two weeks, before the cycle starts over again. Thursdays require me to fast starting at midnight until my first labs are drawn, then I can eat something quick, and then resume fasting for 2 hours before taking the oral dose, and then I have to fast again for one hour before being able to eat – or more importantly drink coffee! Labs are drawn constantly throughout the day, including at the same time as the IV dose is being administered, I’ll give you a tally after Thursday - it should be an interesting day.
As my nurse, Linda, told me “every approved treatment started off as a phase one clinical trial”; let’s hope this is the next best up and coming treatment.
UPCOMING APPTS:
10/25, 10/26, 10/29
11/1, 11/2, 11/5
11/8
11/15
Friday, October 19, 2012
Short Game
Well the waiting game ended up being shorter than we’d thought it would be, not for the results of the tumor snapshot, which of course is taking longer than expected. I received a call Monday night from the Phase 1 clinical trial RN, Sue, asking me to come into the office on Tuesday to talk about, and potentially sign the consent form for, a trial that has come about. Sue stated that both Dr. H and Dr. Cho agreed that it would be a worthwhile attempt, even though we do not yet have the results of the snapshot.
As with our first appointment with Dr. Cho and Sue, the meeting proved to be overwhelming. Even though Sue emailed me the 26 page consent form which I read through thoroughly, there was still an abundance of information and changes to take in.
This trial uses two drugs (SAR245408 and SAR256212) that have been used before, but are being used in combination for the first time; one is an oral drug taken daily and the other is administered through an IV weekly. This trial is at tier 4, which means that this is the fourth increase of the dosage for this combination of drugs; which is very good for me because it means that the dosage is at a level where it could actually help, instead of the under-dosing where a phase 1 trial must begin. I have been told that these two drugs seem to be tolerated well, and that other chemotherapy drugs that I have been on are harder to handle than these are. It all seems fine and dandy right? Well, there’s always a catch.
I stated in my last post that phase 1 trials were extremely time consuming, and I heard them say this, and I took in this information; but, I did not fully comprehend how much time and money being in a trial would entail, until this last appointment. Prior to being accepted in the trial I must go through a screening process: ct scan, echocardiogram, blood work, physical exam, and an EKG. Assuming that I am eligible following the screening process, I will begin the trial Thursday, October 25th. Being on a trial not only means that I had to change doctors, but it also means that I will be treated in a different building with different nurses and staff – it’s like starting all over again. I will go into more detail about the trial schedule after Monday’s appointment. I’m going to take this new venture one step at a time.
UPCOMING APPTS:
10/20: CT Scan
10/22: Echocardiogram, blood work, physical exam, EKG
Tuesday, October 2, 2012
The Waiting Game
Our first meeting with Dr. Cho was a basic introduction. He explained to us what phase one clinical trials are and how they work, the following is what I took from the meeting. Phase one means that it is a brand new drug or the first time that two already existing drugs are being combined and used for treatment. The trials currently being performed are using targeted drugs, meaning that the drug blocks a certain pathway of the cell to block growth and production of the cancerous cell. In order to find out which pathway my cancer is using they must study the mutation of the cancerous cells. The tumor that was extracted from my thymus a couple years ago will be sent to Mass General to be studied and the results given to Dr. Cho so that an appropriate trial, if any, can be chosen. If the exact mutation cannot be identified I will either have my name submitted to enter a trial that blocks two of the most common pathways, or I will possibly be put on an already FDA approved chemotherapy drug that has shown some success in one thymic carcinoma case study. It will take three or so weeks to receive the results of the mutation study from Mass General, so for now it's back to the waiting game.
Other general trial information: 1. side effects can be unpredictable 2. trials vary but can be extremely time consuming 3. three people are assigned to each designated dosage of the drug, if the dose is too strong for a person at their assigned dosage they can lower the dosage but are no longer useful to the trial study. 4. if a person is taking a drug that is working for them, but the drug is being removed from trial, that person can remain on the drug that is working for them. 5. there is no limit to the number of trials that you can participate in.
There is a lot of information to take in and I'm sure I didn't get it all, but as with everything, we will take it one step at time.
UPCOMING APPTS:
TBD
Other general trial information: 1. side effects can be unpredictable 2. trials vary but can be extremely time consuming 3. three people are assigned to each designated dosage of the drug, if the dose is too strong for a person at their assigned dosage they can lower the dosage but are no longer useful to the trial study. 4. if a person is taking a drug that is working for them, but the drug is being removed from trial, that person can remain on the drug that is working for them. 5. there is no limit to the number of trials that you can participate in.
There is a lot of information to take in and I'm sure I didn't get it all, but as with everything, we will take it one step at time.
UPCOMING APPTS:
TBD
Monday, October 1, 2012
One of those Days
Thursday, September 27, 2012 gets filed under the category of "one of those days". We arrived for my appointment at BI hopeful and anxious to receive the results of my most recent ct scan and head MRI; but first thing is first, having my blood drawn and port flushed. What is normally a smooth and tedious process becomes more of a procedure when someone new is taking care of it. I love my normal nurse, and yes she deserves vacations, but I don't have to like when she's not there.
Following the blood draw/port flush we headed back into the waiting room to do just that, wait. Fifteen minutes after my appointment time we were taken back to a freezing exam room, and waited some more. After waiting, and freezing, for an hour and a half Dr. H finally came into the room and apologized for the delay. He then proceeded to tell us that the head MRI was fine; but, the ct scan showed that the Sutent wasn't working. Although one of the larger tumors in my liver was a bit smaller, several new tumors had appeared; there are currently about a dozen tumors spread throughout my liver.
We have exhausted all of the current treatment options that are available for thymic carcinoma, therefore our next step will be to meet with a BI Phase One Clinical Trial doctor. From the brief description that I have, a phase one trial is the starting point for a new drug, the purpose is to experiment with the dosage, the effectiveness of the drug is a secondary concern to the physicians. Clinical trials have limited openings, and can take place at various hospitals. We were lucky enough to get an appointment with Dr. Cho, a BI clinical trial doctor, today (Mon. 10/1) where we will receive more information about the process and wait time to be accepted into a trial.
After being in the frigid exam room for so long I couldn't warm up, my entire body was shivering for over an hour, my muscles hurt from the tightening and shaking, which I imagine is what led to the 3 day migraine that I had all weekend. Now it is Monday, I am back to work and awaiting our afternoon appointment to learn about the next step in this battle. I can only hope that Dr. Cho will have some uplifting information to share with us.
UPCOMING APPTS:
Monday, October 1st - first meeting with Dr. Cho, intro to phase 1 clincial trials
Following the blood draw/port flush we headed back into the waiting room to do just that, wait. Fifteen minutes after my appointment time we were taken back to a freezing exam room, and waited some more. After waiting, and freezing, for an hour and a half Dr. H finally came into the room and apologized for the delay. He then proceeded to tell us that the head MRI was fine; but, the ct scan showed that the Sutent wasn't working. Although one of the larger tumors in my liver was a bit smaller, several new tumors had appeared; there are currently about a dozen tumors spread throughout my liver.
We have exhausted all of the current treatment options that are available for thymic carcinoma, therefore our next step will be to meet with a BI Phase One Clinical Trial doctor. From the brief description that I have, a phase one trial is the starting point for a new drug, the purpose is to experiment with the dosage, the effectiveness of the drug is a secondary concern to the physicians. Clinical trials have limited openings, and can take place at various hospitals. We were lucky enough to get an appointment with Dr. Cho, a BI clinical trial doctor, today (Mon. 10/1) where we will receive more information about the process and wait time to be accepted into a trial.
After being in the frigid exam room for so long I couldn't warm up, my entire body was shivering for over an hour, my muscles hurt from the tightening and shaking, which I imagine is what led to the 3 day migraine that I had all weekend. Now it is Monday, I am back to work and awaiting our afternoon appointment to learn about the next step in this battle. I can only hope that Dr. Cho will have some uplifting information to share with us.
UPCOMING APPTS:
Monday, October 1st - first meeting with Dr. Cho, intro to phase 1 clincial trials
Friday, September 14, 2012
Sutent Month 2
The second round of sutent was a bit more trying than the first one. Yesterday's doctor appointment was long, as we went over the list of side effects that I have had from the sutent, including but not limited to: skin irritation, mouth irritation (as if my whole mouth has been burnt raw), loss of hair pigmentation, fatigue, nausea, and migraines to name a few. Dr. H has reduced the dosage for the last seven days of this round from 37.5mg to 25mg to help with some of the side effects; but mostly because my white count is borderline low. In the past month of being on sutent I have had three pretty bad migraines resulting in vomiting, because of this we have scheduled a head MRI. We have also scheduled the first ct scan since I've been on Sutent. Let's hope that the imaging shows that all of this has been worth it - in which case, bring on month 3, after a much needed 2 week break!
UPCOMING APPTS:
9/22: Ct Scan & MRI
9/27: Results & Port Flush
UPCOMING APPTS:
9/22: Ct Scan & MRI
9/27: Results & Port Flush
Wednesday, August 8, 2012
Sutent, Month 1 Complete!
One month of Sutent done! With permission, I’m taking a two week break from chemo.
Sutent wasn’t as bad as I was anticipating from what the doctors and the description was saying. I had a few rough days here and there; but overall it was manageable. I will begin taking sutent again on the 22nd of August, and check in with the doctor on Sept. 13th.
I hope everyone is having a great summer!
Sutent wasn’t as bad as I was anticipating from what the doctors and the description was saying. I had a few rough days here and there; but overall it was manageable. I will begin taking sutent again on the 22nd of August, and check in with the doctor on Sept. 13th.
I hope everyone is having a great summer!
Friday, July 6, 2012
Sutent
My insurance approved Sutent!! My doctor was shocked; but we're all very happy about it. As with xeloda we have to use Curascript, a mail order pharmacy, Sutent should be arriving at our house today.
We saw Dr. H yesterday for blood work and to review what to expect while on sutent. Both Dr. H and my nurse warned me that this isn't an easy drug, people who have taken it tend to have a lot of side effects that I should be aware of, including: weakness, nausea, diarrhea, jaundice, pain and swelling of the hands/feet, liver damage (ironic huh?!), mouth sores, taste change, hair loss, body pains, low blood counts, etc... As I have said with all of the chemotherapy drugs I've taken, I can handle the side effects as long as it's working; and I'm very hopeful and optimistic with sutent. I will begin taking sutent on Monday; two pills, once a day, continuously. If I am handling the drug well, I will continue this schedule and will receive a ct scan after two months. If I am having trouble with extreme side effects, I will take sutent for four weeks and take two weeks off before beginning again.
Between the monthly fees of the $100 copay for the sutent and the ~$100 for meds to prevent and fix side effects, this is going to be quite the financial struggle; but if it works, I don't think you can invest in anything better than added time to your life. So, here we go Sutent!
UPCOMING APPTS:
7/26: check-in w/Dr. H & port flush
We saw Dr. H yesterday for blood work and to review what to expect while on sutent. Both Dr. H and my nurse warned me that this isn't an easy drug, people who have taken it tend to have a lot of side effects that I should be aware of, including: weakness, nausea, diarrhea, jaundice, pain and swelling of the hands/feet, liver damage (ironic huh?!), mouth sores, taste change, hair loss, body pains, low blood counts, etc... As I have said with all of the chemotherapy drugs I've taken, I can handle the side effects as long as it's working; and I'm very hopeful and optimistic with sutent. I will begin taking sutent on Monday; two pills, once a day, continuously. If I am handling the drug well, I will continue this schedule and will receive a ct scan after two months. If I am having trouble with extreme side effects, I will take sutent for four weeks and take two weeks off before beginning again.
Between the monthly fees of the $100 copay for the sutent and the ~$100 for meds to prevent and fix side effects, this is going to be quite the financial struggle; but if it works, I don't think you can invest in anything better than added time to your life. So, here we go Sutent!
UPCOMING APPTS:
7/26: check-in w/Dr. H & port flush
Monday, July 2, 2012
The Past Few Weeks
So it’s been a complicated few weeks, and I should have written earlier; because now it all seems like a whirlwind of information, so I’m going to break it down by date and skip a lot of the details.
6/15: We met with Dr. H, and took another walking test of my O2 levels. My O2 levels again dropped pretty low, but because all of the tests turned out okay the week before, we went ahead and administered chemo.
6/22: As with the past few weeks I did another O2 walking test, this time the results were dangerously low. Dr. H refused to administer chemo and ordered pulmonary tests as well as a ct scan.
6/25: I called in the morning was able to get the pulmonary testing and the ct scan scheduled for the same day, Monday the 25th.
6/29: Results.
The pulmonary testing showed that my lung function seems to be stable from the pulmonary testing that I had a year ago. This is good news, but leads to some confusion as to why my O2 stats are dropping so low, Dr. H would like me to meet with a pulmonologist (yet to be scheduled).
The ct scan showed both increased growth in the existing tumors and that there are additional small tumors that have popped up in my liver. We have officially stopped the use of Gemzar, as it is not working. After three years of constant chemotherapy and the limited information we know about thymic carcinoma, my options are limited. My best bet seems to be a phase two clinical trial that is being run at the NCI in Bethesda, MD; however, due to the financial burden that this would put on us, we are trying to get my insurance to approve the same chemotherapy drug (Sutent) that they are using but have it administered at BI in Boston. If the Sutent is approved by my insurance, I would be taking it on a continuous basis, and the co-pay will be $100 each time we need to fill it; but I’m figuring it’s still cheaper than flying to Maryland constantly – so fingers crossed!
I think I covered the important highlights; I will write again soon as to whether or not Sutent was approved, and the specifics of our next course of action.
Friday, June 8, 2012
The Cost of a great Memorial Day Weekend
I have to say that we had the best Memorial Day weekend that we've had in a very long time, maybe ever; but I suppose, that comes with a cost.
Last week we arrived at BI all set for a quick visit, and ended up waiting for an hour and a half for my blood work results to come back, at which time we were Finally able to start treatment, so needless to say, it was not a quick visit. Last week's treatment left me completely lethargic and nauseous for six days, when at last today I was feeling better, it was time to go back in for another treatment.
Today's visit was completely... frustrating. We arrived a little bit early and were taken back to have my blood drawn, while waiting for the results we met with Dr. H for a check up. We went over all of the normal questions and talked about how my breathing has been getting progressively worse, he decided that he wanted to test it, so off I went speed walking the halls with the O2 monitor on my finger. After our brisk walk and my descending numbers Dr. H panicked a bit. He cancelled my treatment for the day and scrambled to send me for an emergency CTA Scan to check for pulmonary embolisms or other lung issues that the Gemzar might be causing. While the secretary was going through the anguishing process of approving the scan through my insurance and calling to set it up with radiology, my nurse changed the needle in my port to accommodate the CTA testing, and rushed me down a couple floors to radiology where they were supposedly waiting for me. Once in radiology, nobody seemed to know who I was or why I was there; but after several minutes of explaining my situation and speaking on the phone to a few people I was taken back for the test. I thought things would be smooth sailing from here, nope. After seeing my port, the tech (not so kindly) told me that he wasn't going to use the port, that they don't use femoral ports for CTA Scans, when I (not so kindly) told him that I've been getting scans using my port for over a year, on a monthly basis, and never once have had a problem. This battle continued for a bit, I won. Back up to oncology we went, and waited, hoping that the results came back before Dr. H left for the day, or else they would then shuffle us down to the ER. After anxiously waiting for a half hour or so, Dr. H came with over to us with the good news: that they didn't see any blood clots; but, I do have shadowing on my lower left lung, which could be the beginning of pneumonia. The plan is to begin a Z-Pak tomorrow (which means a glass of wine tonight) and go back to see Dr. H and hopefully resume treatment a week from today, Friday morning.
I could have done without all of today's aggravation, but at least I get another week of recovery before being treated again. Here's hoping (raising my glass of wine) that next week is smooth sailing!
UPCOMING APPTS:
6/15: Dr. H & Chemo
Last week we arrived at BI all set for a quick visit, and ended up waiting for an hour and a half for my blood work results to come back, at which time we were Finally able to start treatment, so needless to say, it was not a quick visit. Last week's treatment left me completely lethargic and nauseous for six days, when at last today I was feeling better, it was time to go back in for another treatment.
Today's visit was completely... frustrating. We arrived a little bit early and were taken back to have my blood drawn, while waiting for the results we met with Dr. H for a check up. We went over all of the normal questions and talked about how my breathing has been getting progressively worse, he decided that he wanted to test it, so off I went speed walking the halls with the O2 monitor on my finger. After our brisk walk and my descending numbers Dr. H panicked a bit. He cancelled my treatment for the day and scrambled to send me for an emergency CTA Scan to check for pulmonary embolisms or other lung issues that the Gemzar might be causing. While the secretary was going through the anguishing process of approving the scan through my insurance and calling to set it up with radiology, my nurse changed the needle in my port to accommodate the CTA testing, and rushed me down a couple floors to radiology where they were supposedly waiting for me. Once in radiology, nobody seemed to know who I was or why I was there; but after several minutes of explaining my situation and speaking on the phone to a few people I was taken back for the test. I thought things would be smooth sailing from here, nope. After seeing my port, the tech (not so kindly) told me that he wasn't going to use the port, that they don't use femoral ports for CTA Scans, when I (not so kindly) told him that I've been getting scans using my port for over a year, on a monthly basis, and never once have had a problem. This battle continued for a bit, I won. Back up to oncology we went, and waited, hoping that the results came back before Dr. H left for the day, or else they would then shuffle us down to the ER. After anxiously waiting for a half hour or so, Dr. H came with over to us with the good news: that they didn't see any blood clots; but, I do have shadowing on my lower left lung, which could be the beginning of pneumonia. The plan is to begin a Z-Pak tomorrow (which means a glass of wine tonight) and go back to see Dr. H and hopefully resume treatment a week from today, Friday morning.
I could have done without all of today's aggravation, but at least I get another week of recovery before being treated again. Here's hoping (raising my glass of wine) that next week is smooth sailing!
UPCOMING APPTS:
6/15: Dr. H & Chemo
Tuesday, May 22, 2012
Two for Two
There’s not much to tell this post, Round 2 of Gemzar is complete; although I feel like I’ve been doing this one for ages! Luckily, we're two for two - I got all three treatments in, albeit by the skin of my teeth. My platelet count was low this past Friday, but high enough that with the doctor’s permission (and a little persuasion from myself) I was able to receive treatment (phew!). The best part is that I now have a chemo free Memorial Day Weekend!!
The goal is to get in one more round (hopefully 3 treatments) and then do a CT Scan.
I hope that everyone has a great long weekend!
UPCOMING APPTS:
6/1: Chemo
6/8: Dr. H & Chemo
6/15: Chemo
The goal is to get in one more round (hopefully 3 treatments) and then do a CT Scan.
I hope that everyone has a great long weekend!
UPCOMING APPTS:
6/1: Chemo
6/8: Dr. H & Chemo
6/15: Chemo
Tuesday, April 24, 2012
Weekends, what are those?!
Weekends, what are those?! Having chemo three Fridays in a row really eats up the weekends. The first weekend on Gemzar I had a migraine and felt nauseous from the moment I finished treatment through Sunday morning, making it difficult to be out of bed with my eyes open; but, the good news was that by Sunday night I was just about fully recovered. The second week was more promising; with only slight nausea and tiredness through the weekend, which left me hopeful for the third week. The third week did not take a lead from the second week - it left me feeling completely lethargic and useless with my whole body aching, slight nausea and foggy brained, and some of these symptoms have not yet dissipated, but are getting better. Needless to say, I am looking forward to having a break from chemo this Friday and a break from sitting in Red Sox traffic! I will be the first to say that I took Xeloda for granted; it didn’t dawn on me at the time how great I felt even though I was taking chemo, perhaps we can revisit the oral medications if necessary. Dr. H was happy that we were able to get three treatments of Gemzar in, he thought that my counts would be too low and we would already have to drop down to two weeks on and one week off. Gemzar is known to lower blood counts dramatically, because of this I have to get my counts checked weekly and then again just before administering chemo to make sure they are not too low. Let’s go forward hoping for more weeks like the second and that Gemzar is doing its job.
The past three weeks haven’t been all bad; John Michael and I were able to celebrate his birthday on the 16th and mine on the 18th, with a slight detour for blood work on my birthday. Birthdays have become a very meaningful experience in the last three years, one that I do not take for granted.
Another meaningful day that I do not take for granted is the day my amazing husband and I were married, April 26th. We are truly partners in everything and enjoy even the little moments in life just because we are together. I could never begin to express the happiness and love he brings to my life each and every day. Happy Anniversary my love!
UPCOMING APPTS: (if blood counts are high enough)
Fri. May 4th: Dr. H & Chemo
Fri. May 11th: Chemo
Fri. May 18th: Chemo
The past three weeks haven’t been all bad; John Michael and I were able to celebrate his birthday on the 16th and mine on the 18th, with a slight detour for blood work on my birthday. Birthdays have become a very meaningful experience in the last three years, one that I do not take for granted.
Another meaningful day that I do not take for granted is the day my amazing husband and I were married, April 26th. We are truly partners in everything and enjoy even the little moments in life just because we are together. I could never begin to express the happiness and love he brings to my life each and every day. Happy Anniversary my love!
UPCOMING APPTS: (if blood counts are high enough)
Fri. May 4th: Dr. H & Chemo
Fri. May 11th: Chemo
Fri. May 18th: Chemo
Friday, March 30, 2012
Introducting Gemzar!
Admittedly I did not have high hopes for yesterday’s doctor appointment, and as expected, the tumors have continued to grow. Xeloda was great while it was working; but we have come to an end and are moving onto Gemzar. Gemcitabine (Gemzar) is an IV chemotherapy administered every week for three weeks with one week off. The most severe side effect of this drug is the lowering of blood counts, in which case if they get too low Gemzar will be administered two weeks in a row with one week off instead of three. As always, there is also a possibility of the normal chemotherapy side effects with Gemzar: fever, chills, nausea, muscle aches, mild hair loss, etc. I will begin this new, hopeful, treatment one week from today, Good Friday.
In the spirit of hopefulness, positive outlooks, and going through as many chemotherapy drugs as necessary, I want to recognize the fact that I have made it three years since being diagnosed. I was diagnosed in March of 2009 at which time my life expectancy was projected to be a year and a half at most; I can proudly say that this past month marked three years, double the projected expectancy! To all of the people who have helped us along the way, prayed, and sent well wishes, I thank you – here’s to many more years!
Have a Happy Easter!
UPCOMING APPTS:
Chemo – Friday, April 6th
Chemo – Friday, April 13th
Chemo – Friday, April 20th
In the spirit of hopefulness, positive outlooks, and going through as many chemotherapy drugs as necessary, I want to recognize the fact that I have made it three years since being diagnosed. I was diagnosed in March of 2009 at which time my life expectancy was projected to be a year and a half at most; I can proudly say that this past month marked three years, double the projected expectancy! To all of the people who have helped us along the way, prayed, and sent well wishes, I thank you – here’s to many more years!
Have a Happy Easter!
UPCOMING APPTS:
Chemo – Friday, April 6th
Chemo – Friday, April 13th
Chemo – Friday, April 20th
Wednesday, February 15, 2012
VDay Results
Even though we are always greeted with a lot of love at our appointments, this Valentine's day appointment brought some disappointing news. The scan showed that one of the tumors in my liver had grown some; but, the others remained the same.
Dr. H saw his shadow! Just like with winter, we're going to have another six weeks... of Xeloda. Although there was growth to one tumor, it was only minimal, the tumors did shrink the scan before this one, and I'm handling this chemo well.
Here's hoping that the Xeloda kicks in and starts doing its' job, or we're going to have to come up with another treatment plan to keep this cancer from spreading.
I hope that everyone had a wonderful Valentine's day, and that you will have a terrific St. Patrick's Day!!
UPCOMING APPTS:
CT Scan: 3/24
Results: 3/27
Dr. H saw his shadow! Just like with winter, we're going to have another six weeks... of Xeloda. Although there was growth to one tumor, it was only minimal, the tumors did shrink the scan before this one, and I'm handling this chemo well.
Here's hoping that the Xeloda kicks in and starts doing its' job, or we're going to have to come up with another treatment plan to keep this cancer from spreading.
I hope that everyone had a wonderful Valentine's day, and that you will have a terrific St. Patrick's Day!!
UPCOMING APPTS:
CT Scan: 3/24
Results: 3/27
Thursday, January 19, 2012
Xeloda continues
Just a quick post about our recent trip into BI on Tuesday...
The port flush went smoothly and Dr. H says that I seem to be doing great on Xeloda, so I will continue with the treatment as is. The oral form costs a bit more out of pocket, but it gives us the flexibility of not having to go into Boston so much or take time off of work. Xeloda, unlike some of the other chemotherapy options doesn't have the risk of neuropathy or heart damage, which means that if it continues to work, I could remain on Xeloda for a couple of years.
Upcoming Appts:
2/11: CT Scan
2/14: Results, check-up, & port flush (Happy Valentine's Day!)
The port flush went smoothly and Dr. H says that I seem to be doing great on Xeloda, so I will continue with the treatment as is. The oral form costs a bit more out of pocket, but it gives us the flexibility of not having to go into Boston so much or take time off of work. Xeloda, unlike some of the other chemotherapy options doesn't have the risk of neuropathy or heart damage, which means that if it continues to work, I could remain on Xeloda for a couple of years.
Upcoming Appts:
2/11: CT Scan
2/14: Results, check-up, & port flush (Happy Valentine's Day!)
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