I shouldn’t have jinxed myself.
Friday, 11/22 I ended up at Dana Farber for a few symptoms that wouldn’t let up. What I thought was going to be a quick appointment turned into a 7 hour ordeal. My entire body swelled up, I couldn’t find my ankles for a few days! I had an ultra sound done of both of my legs and the good news is that there aren’t any blood clots. I kept my feet elevated and took Lasix this weekend, so my ankles have returned, I just hope this isn’t something that’s going to happen after each treatment. I was also having nausea and vomiting along with low grade fevers and chills. The blood work showed that I had low red blood cells, was anemic and a couple other things were off; I ended up receiving two bags of blood to equalize this. Cultures were taken to see if I have an infection in the port; but we have to wait to see if anything grows out of it for a few days.
Monday, November 25, 2013
Friday, November 15, 2013
11-15-13
Good news: The MRI is clean, meaning that there aren't any lesions in my brain. Using a combination of fentanyl patches (for pain) with zyprexa (for nausea)I've been able to keep food down the past four days or so.
Wednesday was my second dose of Alimta. The first time I received Alimta I received 500mg; however, that has been reduced to 375mg so that I can tolerate it - so far so good. After what I have been dealing with for the past two months or so, I don't have much to complain about. Symptoms from Alimta at this point are just a little nausea and sleepless nights (from the dexamethasone (steroid for nausea)) which I take the day before, day of, and day after treatment, so hopefully I will be able to get some rest tonight.
This past Wednesday we also met with a doctor who specializes in medications for treating pain and he mentioned a procedure called nerve blocking where they use a ct scan to sort of freeze the nerves that control the pain censors for the liver, which if successful could take the pain away for approximately two months - this is if it is the liver causing the pain and the procedure works; but for now, we're going to stick with the patches and zyprexa until we are assured that the Alimta is under control.
Assuming things go well my next set of appointments will be on Friday, December 6th, and my next blog post won't be until after that.
Happy Thanksgiving!!
Wednesday was my second dose of Alimta. The first time I received Alimta I received 500mg; however, that has been reduced to 375mg so that I can tolerate it - so far so good. After what I have been dealing with for the past two months or so, I don't have much to complain about. Symptoms from Alimta at this point are just a little nausea and sleepless nights (from the dexamethasone (steroid for nausea)) which I take the day before, day of, and day after treatment, so hopefully I will be able to get some rest tonight.
This past Wednesday we also met with a doctor who specializes in medications for treating pain and he mentioned a procedure called nerve blocking where they use a ct scan to sort of freeze the nerves that control the pain censors for the liver, which if successful could take the pain away for approximately two months - this is if it is the liver causing the pain and the procedure works; but for now, we're going to stick with the patches and zyprexa until we are assured that the Alimta is under control.
Assuming things go well my next set of appointments will be on Friday, December 6th, and my next blog post won't be until after that.
Happy Thanksgiving!!
Thursday, November 7, 2013
11-3-13
Forgive me for the lapse between posts, I've been very sick, this isn't going to be the best written blog either.
On the Saturday that we went in to have the port flushed with TPA I was not feeling well and vomitting - which means that drinking the liquid highlighter for the ct scan wasn't much fun either; but we got through it and more important the port is working great now!
The following Thursday we went in for blood work, a meeting with Dr. G (the final one before she goes on maternity leave), and the first dose of Alimta. Labs looked good, the scan showed that the liver has been progressively becoming more inflamed which could be causing the stomach pains and other symptoms that I've been having. For the pain/inflammation she put me on Tramadaol and told me to avoid Aleve while on Alimta.
For the Alimta I was put on a decadron dose the day before, day of, and day after treatment to help with nausea. I'm not sure how much of my current illness is treatment related; but it as has been brutal. I haven't been able to keep anything down, not even water or pills,so last Tuesday I went into clinic for fluids, IV pain killers and IV anti-nausea, and even that didn't cure it. We did work with Dr. AW to figure something out, he prescribed me Fentanyl patches to control the pain without having to ingest anything and suggested using Ativan to dissolve under my tongue until I could get a hold on the nausea before taking the really expensive nausea pills that I keep throwing up. It's taken a few days to figure out the dosage that I need and what works - but I still don't have it down.
We go back into clinic tomorrow to review the meds I'm taking and to see if there are any better options, I also am having an MRI to make sure that there aren't any new tumors in the brain that might be controlling/causing the nausea.
Sorry if this didn't make complete sense my brain isn't all there.
UPCOMING APPTS:
Fri: 11-8
Wed: 11-13
On the Saturday that we went in to have the port flushed with TPA I was not feeling well and vomitting - which means that drinking the liquid highlighter for the ct scan wasn't much fun either; but we got through it and more important the port is working great now!
The following Thursday we went in for blood work, a meeting with Dr. G (the final one before she goes on maternity leave), and the first dose of Alimta. Labs looked good, the scan showed that the liver has been progressively becoming more inflamed which could be causing the stomach pains and other symptoms that I've been having. For the pain/inflammation she put me on Tramadaol and told me to avoid Aleve while on Alimta.
For the Alimta I was put on a decadron dose the day before, day of, and day after treatment to help with nausea. I'm not sure how much of my current illness is treatment related; but it as has been brutal. I haven't been able to keep anything down, not even water or pills,so last Tuesday I went into clinic for fluids, IV pain killers and IV anti-nausea, and even that didn't cure it. We did work with Dr. AW to figure something out, he prescribed me Fentanyl patches to control the pain without having to ingest anything and suggested using Ativan to dissolve under my tongue until I could get a hold on the nausea before taking the really expensive nausea pills that I keep throwing up. It's taken a few days to figure out the dosage that I need and what works - but I still don't have it down.
We go back into clinic tomorrow to review the meds I'm taking and to see if there are any better options, I also am having an MRI to make sure that there aren't any new tumors in the brain that might be controlling/causing the nausea.
Sorry if this didn't make complete sense my brain isn't all there.
UPCOMING APPTS:
Fri: 11-8
Wed: 11-13
Thursday, October 17, 2013
10-17-13
Even though the results of the endoscopy biopsy were negative, I have continued to have severe pain, nausea, and vomiting over the past three weeks, it seems worse than it did before. I was expecting my time off from treatment to be an enjoyable one that would allow me to regain strength and momentum – this hasn’t been the case.
Yesterday we had an appointment with Dr. G to discuss the next treatment, which will be Alimpta. During labs my port would not give a blood return, which means that TPA has to be put into the line, left there for an hour and then withdrawn; hopefully this will occur prior to the ct scan that is scheduled for Saturday. I am having a ct scan on Saturday so that we have an accurate baseline prior to starting Alimpta next Thursday. Alimpta is said to be a well-tolerated drug, a week prior to beginning treatment I have to start a daily dose of folic acid and have a b12 shot once every three months (which I received yesterday along with my flu shot). I also have to take a decadron dose the day before, the day of, and the day after treatment. Alimpta is administered once every three weeks.
UPCOMING APPTS:
Sat. 10/19: TPA (hopefully)and CT Scan
Wed. 10/23: GI Appt at BI
Thur. 10/24: Labs/Appt/Treatment
Yesterday we had an appointment with Dr. G to discuss the next treatment, which will be Alimpta. During labs my port would not give a blood return, which means that TPA has to be put into the line, left there for an hour and then withdrawn; hopefully this will occur prior to the ct scan that is scheduled for Saturday. I am having a ct scan on Saturday so that we have an accurate baseline prior to starting Alimpta next Thursday. Alimpta is said to be a well-tolerated drug, a week prior to beginning treatment I have to start a daily dose of folic acid and have a b12 shot once every three months (which I received yesterday along with my flu shot). I also have to take a decadron dose the day before, the day of, and the day after treatment. Alimpta is administered once every three weeks.
UPCOMING APPTS:
Sat. 10/19: TPA (hopefully)and CT Scan
Wed. 10/23: GI Appt at BI
Thur. 10/24: Labs/Appt/Treatment
Tuesday, October 1, 2013
10-1-13
As I stated in the last post, my decision to stay on the clinical trial was a temporary decision until I could figure things out. I have officially withdrawn from the ABT/SCH clinical trial, and I feel as though a giant weight has been lifted. I still have to go in sometime next week to do the exit lab work and tests, at that point I will sit down with Dr. G and set the next treatment plan (which will probably be Alimpta). This might be an unpopular decision; but dreading treatment on a daily basis and constantly being sick isn't how I want to live my days. I will continue to search for a treatment that can give me the balance of reducing the tumors as well as allowing me to have more good days than bad, let's hope that Alimpta (or the next treatment) is it!
Thursday, September 19, 2013
9-19-13
I'm not sure exactly how I feel about yesterday's result appointment of my most recent ct scan. The factual results are that the scan looked mostly stable, with a few areas that could have possibly increased. The uncertainty of these areas is because each scan cuts the image in a different spot, keeping it open to the interpretation of the tumor size as a whole.
Due to the vague results of the scan, Dr. G focused on the total benefit of this trial in my case and questioned if it was worthwhile continuing when considering all of the side effects and difficulty that I've had. I always have some sort of idea, and/or plan as to what I'm going to do depending on the scan results; but, I have to say that this is a tough one. I have one chemotherapy drug in my back pocket(alimpta) that Dr. G says has a fair chance of working. My concern is that if Alimpta turns out not to work, I could possibly be left without an alternative until another phase one trial becomes available for me (once exiting a trial, you cannot rejoin) which is much scarier than being on a trial that has at least slowed the tumor progression, if not stabalized it.
The final decision of the appointment was completely the opposite of a final decision; because I was unprepared to make the decision, I will remain on this clinical trial, at least for now.
UPCOMING APPTS:
Fri. 9/20: Endoscopy @ BIDMC
Due to the vague results of the scan, Dr. G focused on the total benefit of this trial in my case and questioned if it was worthwhile continuing when considering all of the side effects and difficulty that I've had. I always have some sort of idea, and/or plan as to what I'm going to do depending on the scan results; but, I have to say that this is a tough one. I have one chemotherapy drug in my back pocket(alimpta) that Dr. G says has a fair chance of working. My concern is that if Alimpta turns out not to work, I could possibly be left without an alternative until another phase one trial becomes available for me (once exiting a trial, you cannot rejoin) which is much scarier than being on a trial that has at least slowed the tumor progression, if not stabalized it.
The final decision of the appointment was completely the opposite of a final decision; because I was unprepared to make the decision, I will remain on this clinical trial, at least for now.
UPCOMING APPTS:
Fri. 9/20: Endoscopy @ BIDMC
Thursday, September 12, 2013
9-12-13
Yesterday's appointment with the gastroenterologist at BIDMC went well. Dr. Doyle was very nice, following the exam he decided it best to schedule an endoscopy to try to figure out what has been going on. I will be sedated for the procedure, which involves putting a camera down my throat to my stomach, that fun will take place next Friday (9/20).
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