Well I can only hope that 2014 begins better than 2013 ends. We went into DFCI on 12/20 for a scan, to meet meet with a palliative care doctor and to meet with the doctor who is replacing Dr. G while she is on maternity leave. The scan was stable, so I will remain on Alimpta but lower the dose again because I'm have so many side effects. The palliative care doctor spoke to us about lazering the nerve endings that connect to the liver, which should reduce the pain (this would last about two two to three months). My blood work came back with my platelet count of 8 (it should be a couple of hundred). My platelets being so low explain the tiredness, dizziness, bruising and bloody noses that I've been getting, so while we were there i was infused with platelets and my next chemo treatment was pushed back til January 3rd.
UPCOMING APPTS:
Fri. Jan. 3rd: Blood work & Infusion
Tuesday, December 31, 2013
Monday, November 25, 2013
11-25-13
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.
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.
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).
Monday, September 9, 2013
9-9-13
I know it’s been a while since I’ve posted – sorry!! The past month or so I’ve been dealing with a lot of stomach pains, the week of sickness that occurs after the SCH IV treatment and most recently an annoying cold of all things. I thought that the sickness after the IV treatment was getting better, and it definitely isn’t as bad as the first time; but it does still include a boat load of medication, nausea, vomiting, dizziness, sore muscles, fatigue, etc. for six to seven days after receiving treatment. The big question in my mind has been whether or not it’s worth it… if I’m spending most of my days sick, what’s the quality of life that I’m actually gaining – but we won’t broach this question just yet, the bigger question is if it’s even working, and we’ll find out that answer relatively soon. In the meantime this treatment has reminded me to appreciate the days that I do feel good and make the most of them.
UPCOMING APPTS:
Wed. 9/11: BIDMC, Dr. Doyle (GI doc for the stomach pains)
Fri. 9/13: DFCI, ABT/SCH Treatment
Sat. 9/14: DFCI, CT Scan
Wed. 9/18: DFCI, Scan Results
UPCOMING APPTS:
Wed. 9/11: BIDMC, Dr. Doyle (GI doc for the stomach pains)
Fri. 9/13: DFCI, ABT/SCH Treatment
Sat. 9/14: DFCI, CT Scan
Wed. 9/18: DFCI, Scan Results
Thursday, July 25, 2013
7-25-13
We’ll call this The Good News Post!
Yesterday we received the results of the scan taken on 7/20, and the results are “encouraging” says Dr. G. This is the first scan since prior to starting the ABT/SCH trial and we were warned not to expect much – that results can be delayed and not appear until the second comparison scan. The scan showed “no new tumor growth” and “approximately a five percent decrease in tumor mass”. For some reason (unbeknownst to me) the trial selects certain tumors to watch and measure, and not the actual total tumor mass that a person has; meaning that the 5% is relative, but in all honesty I’m happy with any amount of decrease in tumor mass! I can’t say that I didn’t wish this treatment was easier to handle, and that my bounce-back time after the IV was shorter, but as with every treatment, if it works, it’s worth it!
Other good news yesterday was that my labs still look good, other than low calcium and magnesium, which aren’t a big deal. The reason that this is such good news is that unlike most of the chemotherapies, that cause my platelets and white count to take a hit, which can only be sustained so long, the chance of me being able to remain on this treatment long-term is increased tremendously by normal blood counts.
I’ll keep the ball rolling and end with some random good news that my hair loss has slowed down – prior to it all falling out! It might be super short and thin; but it somewhat looks like a style and I don’t have to pull the wigs out of the closet, in my world this is a success!
Yesterday we received the results of the scan taken on 7/20, and the results are “encouraging” says Dr. G. This is the first scan since prior to starting the ABT/SCH trial and we were warned not to expect much – that results can be delayed and not appear until the second comparison scan. The scan showed “no new tumor growth” and “approximately a five percent decrease in tumor mass”. For some reason (unbeknownst to me) the trial selects certain tumors to watch and measure, and not the actual total tumor mass that a person has; meaning that the 5% is relative, but in all honesty I’m happy with any amount of decrease in tumor mass! I can’t say that I didn’t wish this treatment was easier to handle, and that my bounce-back time after the IV was shorter, but as with every treatment, if it works, it’s worth it!
Other good news yesterday was that my labs still look good, other than low calcium and magnesium, which aren’t a big deal. The reason that this is such good news is that unlike most of the chemotherapies, that cause my platelets and white count to take a hit, which can only be sustained so long, the chance of me being able to remain on this treatment long-term is increased tremendously by normal blood counts.
I’ll keep the ball rolling and end with some random good news that my hair loss has slowed down – prior to it all falling out! It might be super short and thin; but it somewhat looks like a style and I don’t have to pull the wigs out of the closet, in my world this is a success!
Friday, July 19, 2013
7-19-13
Things are pretty much the same, although I can't say the 100 degree temps are helping any.
Over the past week I've had pretty bad stomach pains and reflux, causing me to throw up when I lay down. Dr. G said to take prilosec on a daily basis for this, and to stay away from Aleve. This might be a drug related symptom.
The fourth dose of the SCH IV dose produced the same symptoms as last time: nausea, vomiting, weakness, foggy-headedness (if that's a word), tiredness, I expect that they will last the standard five days as with the past three doses; and all is the same with the oral dose (a whole lot of nothing, which is nice). My labs came back normal except for my calcium and magnesium were a little low; but, we took care of the magnesium yesterday and I'm taking tums for the calcium.
Tomorrow will be my first ct-scan since beginning ABT and SCH, I will write again when I receive the results on Wednesday.
Stay Cool!
UPCOMING APPTS:
7/20: CT SCAN
7/24: Labs, Dr., Oral Dose, Labs
Over the past week I've had pretty bad stomach pains and reflux, causing me to throw up when I lay down. Dr. G said to take prilosec on a daily basis for this, and to stay away from Aleve. This might be a drug related symptom.
The fourth dose of the SCH IV dose produced the same symptoms as last time: nausea, vomiting, weakness, foggy-headedness (if that's a word), tiredness, I expect that they will last the standard five days as with the past three doses; and all is the same with the oral dose (a whole lot of nothing, which is nice). My labs came back normal except for my calcium and magnesium were a little low; but, we took care of the magnesium yesterday and I'm taking tums for the calcium.
Tomorrow will be my first ct-scan since beginning ABT and SCH, I will write again when I receive the results on Wednesday.
Stay Cool!
UPCOMING APPTS:
7/20: CT SCAN
7/24: Labs, Dr., Oral Dose, Labs
Tuesday, July 9, 2013
7-9-13
Short & Sweet:
The third dose of the SCH IV treatment produced similar symptoms to the last dose that I was given; the only difference being that I was put on a regimented nausea treatment, which seemed to lessen the overall nausea to some extent. The new symptom of this past treatment is a congested cough that I just can’t seem to get rid of! I know that my counts drop and my glands swell from the treatment, so I must have picked up some cold somewhere while vulnerable.
UPCOMING APPTS:
Wed. 7/10: ABT dose, blood work & Dr. G
Wed. 7/17: ABT & SCH dose, blood work, Dr. G
Sat. 7/20: ct scan
Thursday, June 27, 2013
6-27-13
This is really late - Sorry!
The second IV dose of SCH was given last week on 6/19, and you would think that because of my delay in posting that it was as horrible as the first one; but, luckily it wasn't!
The dose of SCH was reduced from 45 to 30 and additional pre and post medications were added for the last IV dose. There was still a ton of nausea, I was wiped out, muscle pain, blah, blah; but, it was not as bad as the last time and that's all that matters. Most importantly, I was able to partially function (with the occasional nap). So, we're going to stick this trial out, and we're half way through the SCH IV doses before my first scan.
The oral dose hasn't given me much trouble (knock on wood), just some extra tiredness and occasional nauseousness. The appointment yesterday went well, all of my blood work is back to where it should be.
My hair is super short and is still falling out fast - which we are hoping will slow down with the dose reduction of the SCH.
UPCOMING APPTS:
Wed. July 3rd: SCH/ABT dosing
The second IV dose of SCH was given last week on 6/19, and you would think that because of my delay in posting that it was as horrible as the first one; but, luckily it wasn't!
The dose of SCH was reduced from 45 to 30 and additional pre and post medications were added for the last IV dose. There was still a ton of nausea, I was wiped out, muscle pain, blah, blah; but, it was not as bad as the last time and that's all that matters. Most importantly, I was able to partially function (with the occasional nap). So, we're going to stick this trial out, and we're half way through the SCH IV doses before my first scan.
The oral dose hasn't given me much trouble (knock on wood), just some extra tiredness and occasional nauseousness. The appointment yesterday went well, all of my blood work is back to where it should be.
My hair is super short and is still falling out fast - which we are hoping will slow down with the dose reduction of the SCH.
UPCOMING APPTS:
Wed. July 3rd: SCH/ABT dosing
Tuesday, June 11, 2013
6-11-13
It has been five days since I received my first SCH727965 iv dose, and I am just now eating normal food and being able to think straight (although things are still foggy, so please forgive me if this post isn’t a smooth read). The nurses were not kidding or exaggerating when they said that I would be sick from the SCH drug!
This past Thursday's appointment began at 7am with the nurses trying to find a vein that they could place an iv in; because the infusion would be administered through the port and they needed a peripheral iv to draw the 20 vials of blood from. After many attempts and even more bruises, the peripheral iv was placed (it lasted almost the whole day!). Labs were taken, hunks of skin were taken, and lots of fluids and pre-meds were given – not a very fair quid pro quo as far as I’m concerned. Approximately an hour into the SCH infusion (which runs over two hours), I began feeling dizzy, nauseous, and we’ll just say etc., because it’s a long list of side effects that escalated quickly. It’s a good thing that John and I were staying at the Longwood Inn that night; as it was John had to push me in a wheelchair (because I was unstable) from DFCI one block to the hotel, which I couldn’t even make without throwing up. I continued to take medications to help prevent and stop all of the side effects; we also spent Friday and Saturday at DFCI where they gave me fluids and more meds. The SCH dose also threw off several of my blood counts. A normal SGOT should be between 9 and 30, mine was 365 on Friday and 96 on Saturday. A normal SGPT should be between 7 and 52, mine was 228 on Friday and 131 on Saturday (SGOT AND SGPT are both liver function tests). A normal LDH should be between 107 and 231, mine was 1512 on Friday and 1181 on Saturday…. These are just examples of how intense this dose affected me. Even after five days my glands are still swollen, my entire body hurts and I find it hard to focus or retain information.
I would like to decrease the potency of the SCH drug that I am receiving; however, I am not sure that this is a possibility. Dr. G says that they will give me more pre-medications next iv dose and that should help; but I have to say, if the second iv dose causes me to be just as “sick” as this time, this might not be the clinical trial for me.
The oral ABT dose was held Thursday night, both doses on Friday, and Saturday morning due to the effects of the SCH dose. I have since continued with the oral dose. We go back into DFCI tomorrow for more blood work, and the oral dose. After the DFCI appointment we have to go to BI for blood work to “close out” the clinical trial that I ended just over a month ago (I think the people running these trials are a secret cult of vampires! - this is a joke).
I have to say that even with all of the warnings I didn’t think I’d be that sick; but I can only assume that the SCH drug packed a powerful punch and hopefully did some good while it was tormenting my entire insides.
This past Thursday's appointment began at 7am with the nurses trying to find a vein that they could place an iv in; because the infusion would be administered through the port and they needed a peripheral iv to draw the 20 vials of blood from. After many attempts and even more bruises, the peripheral iv was placed (it lasted almost the whole day!). Labs were taken, hunks of skin were taken, and lots of fluids and pre-meds were given – not a very fair quid pro quo as far as I’m concerned. Approximately an hour into the SCH infusion (which runs over two hours), I began feeling dizzy, nauseous, and we’ll just say etc., because it’s a long list of side effects that escalated quickly. It’s a good thing that John and I were staying at the Longwood Inn that night; as it was John had to push me in a wheelchair (because I was unstable) from DFCI one block to the hotel, which I couldn’t even make without throwing up. I continued to take medications to help prevent and stop all of the side effects; we also spent Friday and Saturday at DFCI where they gave me fluids and more meds. The SCH dose also threw off several of my blood counts. A normal SGOT should be between 9 and 30, mine was 365 on Friday and 96 on Saturday. A normal SGPT should be between 7 and 52, mine was 228 on Friday and 131 on Saturday (SGOT AND SGPT are both liver function tests). A normal LDH should be between 107 and 231, mine was 1512 on Friday and 1181 on Saturday…. These are just examples of how intense this dose affected me. Even after five days my glands are still swollen, my entire body hurts and I find it hard to focus or retain information.
I would like to decrease the potency of the SCH drug that I am receiving; however, I am not sure that this is a possibility. Dr. G says that they will give me more pre-medications next iv dose and that should help; but I have to say, if the second iv dose causes me to be just as “sick” as this time, this might not be the clinical trial for me.
The oral ABT dose was held Thursday night, both doses on Friday, and Saturday morning due to the effects of the SCH dose. I have since continued with the oral dose. We go back into DFCI tomorrow for more blood work, and the oral dose. After the DFCI appointment we have to go to BI for blood work to “close out” the clinical trial that I ended just over a month ago (I think the people running these trials are a secret cult of vampires! - this is a joke).
I have to say that even with all of the warnings I didn’t think I’d be that sick; but I can only assume that the SCH drug packed a powerful punch and hopefully did some good while it was tormenting my entire insides.
Monday, June 3, 2013
6-3-13
The first couple of days at Dana Farber went well. Pre-screening was an all-day process; but everything turned out fine, and my first day of treatment on the clinical trial was last Thursday, June 2nd. I don’t have any complaints about the staff or facility, it’s just still all very different from what we’re used to. DFCI does get bonus points for having seat warmers in the treatment chairs though!
Day one of the clinical trial ABT-888 and SCH727965 was long! We arrived at DFCI a little before 7am, which means that we had to get up at 4:45a (which will be the case on each long DF day), and were able to leave DF around 6p to head home. Throughout the day they drew labs 12 times (ranging from 1-4 vials each time, totaling approximately 32 vials), corkscrewed a chunk of flesh out of my thigh and stitched it up (skin biopsy), gave me the results of my pre-screening ct scan (keep reading), gave me the ABT888 oral drug, and made me very nervous about the upcoming SCH IV drug; so a long but productive day, I suppose. The SCH IV drug is said to make patients very sick, so much so that people often return to the hospital to have additional fluids administered. I will receive a lot of pre-meds to attempt to minimize this; but we’ll see – just in case we are staying at the hotel across the street for the night. I have been taking the ABT888 drug twice per day since 6/2, the effects from that seem to be tiredness and waves of nausea.
The pre-screening ct scan showed that: “there are multiple liver lesions on the right lobe of the liver. Left lobe of the liver is almost entirely replaced with tumor.”, and there are several other nodes scattered throughout my abdomen as well. My next ct scan will be in mid-July; but not much is to be expected, confirmation that the trial drugs are working will take four months of therapy.
This week we are schedule for another 12 hour day on Thursday, June 6th which will include another 32 vials of blood, the administering of ABT888, 2 skin biopsies, IV pre-meds, and the SCH IV drug, then fluids, blood work, and ABT888 on Friday and again on Saturday.
Day one of the clinical trial ABT-888 and SCH727965 was long! We arrived at DFCI a little before 7am, which means that we had to get up at 4:45a (which will be the case on each long DF day), and were able to leave DF around 6p to head home. Throughout the day they drew labs 12 times (ranging from 1-4 vials each time, totaling approximately 32 vials), corkscrewed a chunk of flesh out of my thigh and stitched it up (skin biopsy), gave me the results of my pre-screening ct scan (keep reading), gave me the ABT888 oral drug, and made me very nervous about the upcoming SCH IV drug; so a long but productive day, I suppose. The SCH IV drug is said to make patients very sick, so much so that people often return to the hospital to have additional fluids administered. I will receive a lot of pre-meds to attempt to minimize this; but we’ll see – just in case we are staying at the hotel across the street for the night. I have been taking the ABT888 drug twice per day since 6/2, the effects from that seem to be tiredness and waves of nausea.
The pre-screening ct scan showed that: “there are multiple liver lesions on the right lobe of the liver. Left lobe of the liver is almost entirely replaced with tumor.”, and there are several other nodes scattered throughout my abdomen as well. My next ct scan will be in mid-July; but not much is to be expected, confirmation that the trial drugs are working will take four months of therapy.
This week we are schedule for another 12 hour day on Thursday, June 6th which will include another 32 vials of blood, the administering of ABT888, 2 skin biopsies, IV pre-meds, and the SCH IV drug, then fluids, blood work, and ABT888 on Friday and again on Saturday.
Tuesday, May 21, 2013
5/21/13
It's been a stressful few weeks trying to find the latest medical miracle for thymic carcinoma, or at least a medical solution that has a shot of keeping me alive a little bit longer. After many Google searches and several phone calls for alternatives, it was our meeting with Dr. G at Dana Farber (DF) which proved to give us the best shot at a feasible treatment.
Dr. G works in both the thoracic clinic (chemo/FDA approved treatments) and with clinical trials for thoracic patients. She was able to offer a couple clinical trials that we could consider and also a chemotherapy option that I have not yet tried. The chemotherapy, Alimta, is not well known; but, has had positive results in patients with thymomas (similar, yet different from thymic carcinoma).
After much reading, research and discussion with John, doctors, and nurses we faced the fact that even though it would take up a great deal more time and money, we had to try our luck with one of the clinical trials. The reason being is that clinical trials that I'm eligible for don't come around too often, and can't be guaranteed to come around again; whereas the chemotherapy option will always be in our back pocket. Now that we narrowed it down to a clinical trial we had to choose which trial would be best.
The clinical trial that we settled on is only administered at Dana Farber and is a Phase I Trial of ABT-888 and SCH727965 (without carboplatin). This trial consists of ABT-888, an oral dose, which is taken twice per day, every day, and SCH727965, an IV dose that will be administered once every other week. Appointments range from one to three times per week, anywhere from an hour up to twelve hours. The list of side effects for these drugs is two pages long, and the nurses say that I can expect to feel pretty lousy, especially after the IV dose. CT-scans are taken every two months, and three skin biopsies are taken (size of a pencil eraser chunk will be taken out of my thigh(3 times)) in the beginning months of the trial.
As with the last clinical trial there is a pre-screening process to confirm my eligibility. My pre-screening will be Thursday, May 23rd and consist of a doctor visit, labs, ekg, and a baseline ct-scan. Assuming I am eligible, my first treatment day will be, just the oral dose, on May 30th, the IV dose will be added June 4th.
For the past seven years (three years before the cancer diagnosis) Beth Israel has been my hospital, we know the locations of everything, the doctors, nurses, radiology techs, surgeons, parking attendants, dunkins kiosk staff, etc. It is a little nerve wracking to leave my comfort zone and venture into a new hospital; but, DF and BI are very well connected, and I can still go to BI for anything non-trial related. I think that my loyalty will always lay with my friends at BI, but I am hopeful and optimistic that DF will provide me with not only alternative, successful treatments, but the same family atmosphere that we have developed at BI.
UPCOMING APPTS:
Thr. 5/23: Pre-Screening
Thr. 5/30: C1D1
Fri: 5/31: C1D2
Tue: 6/4: C1D4
Wed: 6/5: C1D5
Thr. 6/6: C1D6
Dr. G works in both the thoracic clinic (chemo/FDA approved treatments) and with clinical trials for thoracic patients. She was able to offer a couple clinical trials that we could consider and also a chemotherapy option that I have not yet tried. The chemotherapy, Alimta, is not well known; but, has had positive results in patients with thymomas (similar, yet different from thymic carcinoma).
After much reading, research and discussion with John, doctors, and nurses we faced the fact that even though it would take up a great deal more time and money, we had to try our luck with one of the clinical trials. The reason being is that clinical trials that I'm eligible for don't come around too often, and can't be guaranteed to come around again; whereas the chemotherapy option will always be in our back pocket. Now that we narrowed it down to a clinical trial we had to choose which trial would be best.
The clinical trial that we settled on is only administered at Dana Farber and is a Phase I Trial of ABT-888 and SCH727965 (without carboplatin). This trial consists of ABT-888, an oral dose, which is taken twice per day, every day, and SCH727965, an IV dose that will be administered once every other week. Appointments range from one to three times per week, anywhere from an hour up to twelve hours. The list of side effects for these drugs is two pages long, and the nurses say that I can expect to feel pretty lousy, especially after the IV dose. CT-scans are taken every two months, and three skin biopsies are taken (size of a pencil eraser chunk will be taken out of my thigh(3 times)) in the beginning months of the trial.
As with the last clinical trial there is a pre-screening process to confirm my eligibility. My pre-screening will be Thursday, May 23rd and consist of a doctor visit, labs, ekg, and a baseline ct-scan. Assuming I am eligible, my first treatment day will be, just the oral dose, on May 30th, the IV dose will be added June 4th.
For the past seven years (three years before the cancer diagnosis) Beth Israel has been my hospital, we know the locations of everything, the doctors, nurses, radiology techs, surgeons, parking attendants, dunkins kiosk staff, etc. It is a little nerve wracking to leave my comfort zone and venture into a new hospital; but, DF and BI are very well connected, and I can still go to BI for anything non-trial related. I think that my loyalty will always lay with my friends at BI, but I am hopeful and optimistic that DF will provide me with not only alternative, successful treatments, but the same family atmosphere that we have developed at BI.
UPCOMING APPTS:
Thr. 5/23: Pre-Screening
Thr. 5/30: C1D1
Fri: 5/31: C1D2
Tue: 6/4: C1D4
Wed: 6/5: C1D5
Thr. 6/6: C1D6
Monday, April 29, 2013
4-29-13
Well, there's a reason that margaritas were necessary at the end of the day today...
One of my wisdom teeth broke, so I had to make a dentist appointment at the last minute; which resulted in a lot of wasted time/money, and an appointment for a consult with an oral surgeon for next week to set up another appointment to pull the tooth.
I also spoke with my oncologist this morning. I am ineligible for the "pd1 trial", the researchers want to limit the patients on the trial to only a few specific cancers. There aren't any other clinical trials that I can go on right now, but that could change weekly.
As I mentioned in the previous post, Dr. H doesn't think that chemotherapy will help me any more at this point. If I did decide to go on a chemo treatment it would be a long shot using a chemo that I've already had but administered in a different dosage/frequency.
I contacted the Cancer Treatment Centers of America (I'm sure you've seen the commercials for the resort looking hospitals); well, they do not have any experience with thymic carcinoma and do not take my health insurance.
I guess my next step will be to contact Dana Farber and see if they've come up with anything new since the last time I met with them and hope that another clinical trial that I'm eligible for comes about soon.
I don't know what our next step in this battle will be, but I am certainly not ready to give up this fight, and we will not stop searching until we find something, even if that means taking a long shot.
One of my wisdom teeth broke, so I had to make a dentist appointment at the last minute; which resulted in a lot of wasted time/money, and an appointment for a consult with an oral surgeon for next week to set up another appointment to pull the tooth.
I also spoke with my oncologist this morning. I am ineligible for the "pd1 trial", the researchers want to limit the patients on the trial to only a few specific cancers. There aren't any other clinical trials that I can go on right now, but that could change weekly.
As I mentioned in the previous post, Dr. H doesn't think that chemotherapy will help me any more at this point. If I did decide to go on a chemo treatment it would be a long shot using a chemo that I've already had but administered in a different dosage/frequency.
I contacted the Cancer Treatment Centers of America (I'm sure you've seen the commercials for the resort looking hospitals); well, they do not have any experience with thymic carcinoma and do not take my health insurance.
I guess my next step will be to contact Dana Farber and see if they've come up with anything new since the last time I met with them and hope that another clinical trial that I'm eligible for comes about soon.
I don't know what our next step in this battle will be, but I am certainly not ready to give up this fight, and we will not stop searching until we find something, even if that means taking a long shot.
Wednesday, April 24, 2013
4-23-13
Today's appointment involved a lot of waiting with very few answers.
The echocardiogram went fine and the results were normal.
The meeting with Dr. H wasn't productive. He feels as though we are at the point where there isn't a chemotherapy that has been shown to work in thymic carcinoma, and if we have to result to anything it will probably be using chemotherapies that I've already had in a lower dosage and in a different regiment. There was a question of how long it will take to get the answer to whether or not I am eligible for the PD1 therapy. Dr. H feels as though it is worth while to wait for the answer if it will only be a month, but two months might be too long to wait. I will call on Friday to get further clarification as to what the plan will be.
UPCOMING APPTS:
who knows?!
The echocardiogram went fine and the results were normal.
The meeting with Dr. H wasn't productive. He feels as though we are at the point where there isn't a chemotherapy that has been shown to work in thymic carcinoma, and if we have to result to anything it will probably be using chemotherapies that I've already had in a lower dosage and in a different regiment. There was a question of how long it will take to get the answer to whether or not I am eligible for the PD1 therapy. Dr. H feels as though it is worth while to wait for the answer if it will only be a month, but two months might be too long to wait. I will call on Friday to get further clarification as to what the plan will be.
UPCOMING APPTS:
who knows?!
Thursday, April 18, 2013
4-18-13
Well today is my birthday, 23... oops, I mean 32 years old (must be dyslexic)! ;o) I had a ct scan this past Saturday and was hoping to get great results as a birthday gift - I was no so lucky.
The scan showed a 36% total tumor mass increase since the baseline scan (this includes a few new tumors that have appeared). This increase makes me ineligible to continue on the trial. Today I had "exit blood work and testing", I refused to sit around and wait for three hours until the echo cardiogram test on my birthday, so I will have to have that done on Tuesday afternoon.
I will call my original oncologist (Dr. H) to see what chemotherapy options I have left. Meanwhile, the clinical trial team will send out a tumor biopsy (taken years ago) to see if I am eligible for "PD1 immune therapy"; there is only a one in four chance of me being eligible, but if accepted it has shown great results in other types of cancer.
UPCOMING APPTS:
Tuesday 4/23: Echo cardiogram & possible meeting w/Dr. H
The scan showed a 36% total tumor mass increase since the baseline scan (this includes a few new tumors that have appeared). This increase makes me ineligible to continue on the trial. Today I had "exit blood work and testing", I refused to sit around and wait for three hours until the echo cardiogram test on my birthday, so I will have to have that done on Tuesday afternoon.
I will call my original oncologist (Dr. H) to see what chemotherapy options I have left. Meanwhile, the clinical trial team will send out a tumor biopsy (taken years ago) to see if I am eligible for "PD1 immune therapy"; there is only a one in four chance of me being eligible, but if accepted it has shown great results in other types of cancer.
UPCOMING APPTS:
Tuesday 4/23: Echo cardiogram & possible meeting w/Dr. H
Friday, April 5, 2013
4-5-13
My last few posts have described the excruciating pain that I have been dealing with for about two months now; well, I think I finally have the pain under control! I am pre-medicating in a way that any pain that I do have is minor to moderate and doesn't last too long. Not to say that I am without side effects from the drug, but if things continue the way they have this past week, it is something that I could deal with long term.
Yesterdays treatment was normal with no real hiccups. My next scan is on the 13th of April with results on my birthday, the 18th.
UPCOMING APPTS:
4/11: Treatment
4/13: CT Scan
4/18: Treatment & Results
Yesterdays treatment was normal with no real hiccups. My next scan is on the 13th of April with results on my birthday, the 18th.
UPCOMING APPTS:
4/11: Treatment
4/13: CT Scan
4/18: Treatment & Results
Tuesday, March 26, 2013
3-26-13
4 years ago today I was diagnosed with a rare form of cancer and was given a year and a half to live. I've been fighting every day since, and it's not easy, but I'm glad that I'm still here today to keep that fight going.
Friday, March 22, 2013
3-21-13
After much discussion and a long day at BI, I was treated yesterday and put back on the same dose of the trial drug that I had previously been on. I will be scheduled for a consult with a gastroenterologist to see if any more information can be found on the cause of the stomach pains/issues.
Tuesday, March 19, 2013
3-19-13
I have had continued severe stomach pains/issues for well over a month now. This past Thursday (3/15/13), the doctors stated that my symptoms have moved into the severe category and that we were unable to treat. Along with holding the Thursday IV dose, I would also hold the oral dose for the week, and begin again this coming Thursday (3/21/13); however, as of this past Monday (3/18/13) the pain and symptoms were just as severe as when I was on the dose. I called the doctor and will be going in for an x-ray of my abdomen and possibly a couple other tests on Thursday, it is unclear if I will resume treatment on Thursday. I'll post when I have results and the plan.
Friday, February 15, 2013
2-15-13
Happy Valentine’s Day (yesterday)! Although John and my day was spent at BI we received some good news, and no matter where we are, as long as we’re together, we’re happy.
As with everything, plans changed. My stomach pains and symptoms have been getting worse, and to be sure there isn’t anything serious going on I had the scan this past Monday, on the 11th instead of waiting until the 21st. As I mentioned above, the results are good. I was given a baseline scan prior to starting the trial and in comparison to that my second scan showed a total tumor increase of 15.5%, but this past scan showed a total tumor decrease of 12.9%! This past scan puts me almost back to my baseline scan. Blood work was also taken yesterday and everything came back normal.
I have still been in a lot of pain and very sick every day; but as I’ve said with all of the treatments, if it’s working, it’s worth it – and who’s to say the next treatment they give me isn’t going to have even worse side effects. The 21st will end my fourth cycle on this trial, the fifth cycle will begin on February 28th. There's been a lot of trial and error, but I’m hoping to find something to rectify the side effects symptoms soon. I'm already anxiously awaiting my April scan and hope that it will yield even better results than this one!
UPCOMING APPTS:
2/21: Treatment
As with everything, plans changed. My stomach pains and symptoms have been getting worse, and to be sure there isn’t anything serious going on I had the scan this past Monday, on the 11th instead of waiting until the 21st. As I mentioned above, the results are good. I was given a baseline scan prior to starting the trial and in comparison to that my second scan showed a total tumor increase of 15.5%, but this past scan showed a total tumor decrease of 12.9%! This past scan puts me almost back to my baseline scan. Blood work was also taken yesterday and everything came back normal.
I have still been in a lot of pain and very sick every day; but as I’ve said with all of the treatments, if it’s working, it’s worth it – and who’s to say the next treatment they give me isn’t going to have even worse side effects. The 21st will end my fourth cycle on this trial, the fifth cycle will begin on February 28th. There's been a lot of trial and error, but I’m hoping to find something to rectify the side effects symptoms soon. I'm already anxiously awaiting my April scan and hope that it will yield even better results than this one!
UPCOMING APPTS:
2/21: Treatment
Wednesday, February 6, 2013
2-6-13
Happy New Year!!
I'm sorry that it has taken me over a month to say that!
January started out great. I was having the normal, daily sickness symptoms that come along with this treatment, but they didn't seem as severe as they had been (or I just got used to dealing with them and treating them).
February on the other hand hasn't been so kind. On top of the original symptoms, I have been getting severe stomach pains that last hours or days at a time. The assumption is that the pains are being caused by the medication, but we can't be sure. My next CT Scan is 2/21. We considered doing the scan sooner because of the pains, but the risk with doing the scan too early is that the dose won't have the adequate time to show the full effects. If the tumors increase in size (a certain amount) I will no longer be eligible for treatment, so waiting until the 21st gives us the best chance to see what's going on and continue treatment. I believe that I will receive the results of the scan on 2/28, I will post again following the results.
UPCOMING APPTS:
2/7: Treatment
2/14: Treatment
2/21: Treatment & Scan
2/28: Treatment & Results
I'm sorry that it has taken me over a month to say that!
January started out great. I was having the normal, daily sickness symptoms that come along with this treatment, but they didn't seem as severe as they had been (or I just got used to dealing with them and treating them).
February on the other hand hasn't been so kind. On top of the original symptoms, I have been getting severe stomach pains that last hours or days at a time. The assumption is that the pains are being caused by the medication, but we can't be sure. My next CT Scan is 2/21. We considered doing the scan sooner because of the pains, but the risk with doing the scan too early is that the dose won't have the adequate time to show the full effects. If the tumors increase in size (a certain amount) I will no longer be eligible for treatment, so waiting until the 21st gives us the best chance to see what's going on and continue treatment. I believe that I will receive the results of the scan on 2/28, I will post again following the results.
UPCOMING APPTS:
2/7: Treatment
2/14: Treatment
2/21: Treatment & Scan
2/28: Treatment & Results
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