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
Thursday, June 27, 2013
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.
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