Our first appointment on Thursday was an audiology exam at 9:30 am. It was a fairly typical hearing test used as a baseline. The chemo treatment was scheduled to begin at 3:00 pm and we finally found out Kevin was accepted into the study group after checking in for that appointment. First more baseline tests – physical exam, EKG, blood draw and a cognitive/neurological exam. They put in two IVs – one for blood draws and one for the chemo. With the chemo IV they gave Kev some Zofran (anti-nausea med) and then finally started the ANG1005 at about 4:30. The plan was to administer the 500 ml mixture over 1 hr period. Because this drug has never before been tested in humans they keep very close watch on the study group participants. Eight blood draws altogether will be taken before we leave on Th –at the start of the infusion then every 30 minutes for the first 1 ½ hrs and then once every hour for the next 4 hours. The blood draws are for pharmacokinetic (PK) testing which measures the amount of the drug in his body at different time points. Vitals are taken every 15 minutes during the infusion, 30 minutes after the finish and then once every hour for the next 4 hours. A total of 3 EKGs will be run throughout the event.
After about 15-20 minutes one of the Researchers comes in and asks if we had started and I tell him “yes, it’s that milky colored one.” He seemed a bit confused and mumbled back, “milky?...yes…milky…I’ll be right back”. Next comes up the pharmacy Drs who introduce themselves, exam the drug, sort of whisper amongst themselves – “it was clear when we mixed it…must have turned cloudy after we shipped it up here…we’ll be right back.” They all return with the floor nurse and explain that they spoke with the pharmaceutical company, Angiochem, and were told the drug should be fine and Kev should be fine, but asked for it in writing and were going to stop the IV until the fax arrived. Apparently Angiochem changed their minds, because after about half an hour we were told they were not going to restart the infusion. Kev had received about 2/3 of the expected dose and again we were assured he should be fine, but an investigation would be conducted. We stayed the required 4 hours and completed the remaining the blood, EKG & vitals. The drug made Kevin very sleepy and he pretty much dosed off as soon as they started it, but other than that there didn’t seem to be any other side effects. Kev did the give the Researcher a bit of a scare when in mid-sentence he nodded off – one of his classics – head tilts back, eyes lids at half mast, eyes roll back in their sockets and mouth drops open. After seeing his concern, I explained he was just sleeping :-0
On Friday we went back for more blood and a physical exam. They informed us the preliminary investigation determined that the cloudy effects of the drug are a result of the concentration. They have just recently started this highest level of concentration and have decided from now on they will increase the dilution to 1 liter and change infusion to 2 hours. Kev was the second participant to receive the highest concentration and although the cloudy effects were not recognized on the first participate, they believe it was present. We were again assured Kev “should be fine” :-)
We are still chasing a very resilient urinary tract infection (UTI) and were given yet another antibiotic to try. Apparently the bacteria remaining were resistant to the previous two antibiotics he was taking. The Researchers are very careful about infections and told us any fever above 100F means a trip to the ER. Next appointment is Wed for more routine tests.
Sunday, June 29, 2008
Thursday, June 26, 2008
Lab Rats
This week has been a whirlwind of events…
Sunday afternoon Kev starts worrying about his left arm which had apparently been getting weaker and loosing sensation. So he calls his Dr and they tell him to come into the ER for an assessment. Kev was obviously concerned that his arm was about to go the same way as his legs. The ER Dr calls in the neurosurgeon on-site (5th year intern). They review the charts/scans and wanting more experience call in the on-call neurosurgeon. They all decided that there really is nothing they can do surgically (since either the brain or spinal tumors could be causing the problem) and paralysis of the arms is likely inevitable, but reserve final decision for Kev’s neurosurgeon himself whom they expected to be in the next day, Monday. Kevin was admitted for observations and we waited. On Monday we found out his neurosurgeon was going to be in surgery all day so he wouldn’t be able to speak with us until Tues – more waiting. But on Tuesday we had a good discussion. Kev and his neurosurgeon get along great. Kev always has a bunch of questions / theories on how the brain works and his Dr really enjoys these conversations. He spent about an hour with us drawing up a bunch of pictures/diagrams and explaining each brain tumor site in addition to the T1 tumor – but the short story is he's convinced that the T1 tumor was the cause of the arm problems and he also was convinced he could remove a significant amount of it and told us he could fit us in within the next few days if desired. So we have another option, but before we make any decisions we want to speak with Targeted Therapy which is scheduled for Wed.
Kev remained “admitted” to make it easier for him since he needed EKG and blood work run on Wed morning and the Target Therapy appt in the afternoon. But just as I was ready to wheel him down for the blood work we were informed that Target Therapy could not see him if he was still “admitted” even though his PA had made some “agreements” the day before– after a few frantic phone calls Kev was discharged in record time – 15 minutes, a process that typically takes hours – and we were on our way. The meeting with Targeted Therapy went great – they presented us with the option of participating in a Phase 1 trail with a new drug ANG1005. It is a mitotic inhibitor combined with amino acid peptide that crosses the blood-brain barrier. It’s considered a “smart-chemo” since it targets the cancer cells specifically without destroying everything else in its path. It has shown promise in lab rats and Kev will be part of a small group humans to first receive the drug. The protocol is pretty simple – IV infusion of 500 mg of ANG1005 every 3 weeks and staging scans every 6 weeks. There is one catch, even though the MDA folks accepted him, the pharmaceutical company, Angiochem, gets final approval and apparently there is some concern regarding his paralysis. A treatment is scheduled for thursday, but is contingent on final approval and we won't know if we have that approval until after we will have already left the house.
Kev decided he wants to try the trial and if it doesn’t work, i.e. tumors grow & his arm further degrades he’ll quit and switch paths.
Thursday proves to be an interesting day….
Sunday afternoon Kev starts worrying about his left arm which had apparently been getting weaker and loosing sensation. So he calls his Dr and they tell him to come into the ER for an assessment. Kev was obviously concerned that his arm was about to go the same way as his legs. The ER Dr calls in the neurosurgeon on-site (5th year intern). They review the charts/scans and wanting more experience call in the on-call neurosurgeon. They all decided that there really is nothing they can do surgically (since either the brain or spinal tumors could be causing the problem) and paralysis of the arms is likely inevitable, but reserve final decision for Kev’s neurosurgeon himself whom they expected to be in the next day, Monday. Kevin was admitted for observations and we waited. On Monday we found out his neurosurgeon was going to be in surgery all day so he wouldn’t be able to speak with us until Tues – more waiting. But on Tuesday we had a good discussion. Kev and his neurosurgeon get along great. Kev always has a bunch of questions / theories on how the brain works and his Dr really enjoys these conversations. He spent about an hour with us drawing up a bunch of pictures/diagrams and explaining each brain tumor site in addition to the T1 tumor – but the short story is he's convinced that the T1 tumor was the cause of the arm problems and he also was convinced he could remove a significant amount of it and told us he could fit us in within the next few days if desired. So we have another option, but before we make any decisions we want to speak with Targeted Therapy which is scheduled for Wed.
Kev remained “admitted” to make it easier for him since he needed EKG and blood work run on Wed morning and the Target Therapy appt in the afternoon. But just as I was ready to wheel him down for the blood work we were informed that Target Therapy could not see him if he was still “admitted” even though his PA had made some “agreements” the day before– after a few frantic phone calls Kev was discharged in record time – 15 minutes, a process that typically takes hours – and we were on our way. The meeting with Targeted Therapy went great – they presented us with the option of participating in a Phase 1 trail with a new drug ANG1005. It is a mitotic inhibitor combined with amino acid peptide that crosses the blood-brain barrier. It’s considered a “smart-chemo” since it targets the cancer cells specifically without destroying everything else in its path. It has shown promise in lab rats and Kev will be part of a small group humans to first receive the drug. The protocol is pretty simple – IV infusion of 500 mg of ANG1005 every 3 weeks and staging scans every 6 weeks. There is one catch, even though the MDA folks accepted him, the pharmaceutical company, Angiochem, gets final approval and apparently there is some concern regarding his paralysis. A treatment is scheduled for thursday, but is contingent on final approval and we won't know if we have that approval until after we will have already left the house.
Kev decided he wants to try the trial and if it doesn’t work, i.e. tumors grow & his arm further degrades he’ll quit and switch paths.
Thursday proves to be an interesting day….
Monday, June 23, 2008
Hospitalized Again
On Sunday we ended back up in the ER. Kev was having some loss of control and strength in his left hand/arm and after speaking with his Drs, it was decided to go in for an assessment. Nothing much has happened so far. They pretty much agree that this could be caused by what’s going on in the brain or the spine or both so surgery doesn’t seem like such a good idea especially when surgical risks are accounted for. Radiation is still on the table - both stereotactic or full brain but any of these options would just further delay the possibility of entering a trial. So it seems like the decision we made on Friday – enter into the trial with Targeted Therapy if accepted and consider radiation if not accepted – is still the best. But that being said, Kev’s regular neurosurgeon was not available for consult today, so we’ll speak with him tomorrow and then make a final decision.
On a favorable note, the strength/control loss he experienced on Sunday has not further degraded, nor has it affected the right side. So hopefully it has stabilized. They have him on high dose steroids again to see if that helps. Thanks for all the payers and positive thoughts. Kev is understandably anxious about this latest development, but is doing well.
On a favorable note, the strength/control loss he experienced on Sunday has not further degraded, nor has it affected the right side. So hopefully it has stabilized. They have him on high dose steroids again to see if that helps. Thanks for all the payers and positive thoughts. Kev is understandably anxious about this latest development, but is doing well.
Sunday, June 22, 2008
Iron Man
Kev has wanted to see Ironman, but due to his busy schedule we hadn’t been able to fit it in. Yesterday afternoon, we finally went – and it was a great movie. Kev was especially excited to see the C-17 used in the movie was the same T1 article that he flew on himself during flight test days. (Kev work on the C-17 program from ’85-’96 starting with original design and following through with flight test and production). And during one scene the main character, Tony Stark, walks off the plane via the Cargo Ramp so we enjoyed up close viewing of the Cargo Door, Ramp and Toes – all of which Kev was intimately involved with during original design. He easily identified the T1 article by the unique hardware installed and was even kind enough to explain each one to us throughout the scene so we too could enjoy the moment. :-) Luckily the movie theater was not very crowded for the matinee showing otherwise we’d have been booted out for talking too much.
The scan results we received on Fri were not good – 3 new brain metastases and numerous additional (although small) subarachnoid/leptomeningeal metastases. But Kev’s oncologist is always optimistic so even though he went through the scans very thoroughly with us, we focused mostly on our options. We have an appointment with the Targeted Therapy on Wed and a tentative treatment scheduled for Th. He seems to think the experimental trials offered by Targeted Therapy are our best option, but we haven’t seen a protocol yet, so we don’t know exactly what these trials involve. If we get accepted, that’s the approach we’ll follow. If we don’t get accepted then we have radiation & surgery options for the brain.
The scan results we received on Fri were not good – 3 new brain metastases and numerous additional (although small) subarachnoid/leptomeningeal metastases. But Kev’s oncologist is always optimistic so even though he went through the scans very thoroughly with us, we focused mostly on our options. We have an appointment with the Targeted Therapy on Wed and a tentative treatment scheduled for Th. He seems to think the experimental trials offered by Targeted Therapy are our best option, but we haven’t seen a protocol yet, so we don’t know exactly what these trials involve. If we get accepted, that’s the approach we’ll follow. If we don’t get accepted then we have radiation & surgery options for the brain.
Wednesday, June 18, 2008
Scan Day
The PET scan was scheduled to begin at 7:30 am, after waiting to be called and prep work, they inject him with Fluorine-18 / glucose mixture [F-18 fluoro-2-deoxyglucose (F-18 FDG)], which apparently makes him so radioactive that I am not allowed to stay in the room with him. After 1.5 hrs of isolation, the scan begins which takes another 1 hour. So finally at close to 11:00 he finishes up. The MRI was scheduled for 7:30 pm, but we were hoping to sneak in earlier if they had any cancellations and avoid a long day at the hospital. (Kev did not feel up to travelling back home to only round-trip again later in the afternoon). We had a leisurely lunch, relaxed in the Sundial area which has a nice view of Holcomb Ave and various large construction cranes. (Kevin and Nick share a love for construction equipment - amongst other things. I think Nick could say “excavator” before he could say “momma”). They finally let us check-in for the MRI around 5:00 on a “stand-by” basis and gave a beeper so we weren’t confined to the small waiting room. Unfortunately, there were no cancellations and Kev finally went in for the MRI at 9:00 – after1 ½ hrs for the procedure, we should be home by midnight….Results on Friday.
Subscribe to:
Posts (Atom)
Posts
