The MRI results are in and confirmed what the PET indicated. There are multiple tumors affecting the spine – disease within the spinal canal at T2 with moderate narrowing and within the vertebrae; disease within the thoracic and lumbar spinal canal starting at T8 and extending to the sacrum; larger tumors on dorsal left aspect of the spinal canal at the T11 measuring 1.1 cm with moderate central canal narrowing and a larger tumor at T12 level to the left of midline with severe central canal narrowing. Radiation therapy started this evening and will continue for 7 days. Unfortunately they are only radiating the spine since the diseased area of the pelvis is within the area that already received maximum doses a little over a year ago. They don’t have a plan for the pelvis yet, but are taking Kevin’s case to one of their peer boards tomorrow for expert opinions from other oncologists.
The meds had him very drowsy today so he wasn’t much for conversation. This was to be expected. They did end up keeping him on the Lyrica (for neuropathy) and he commented his feet are actually feeling better. So his is now taking the Methadone, Dilaudid and Lryica.
We have been in this situation of near disaster 3 or 4 times previously, but somehow Kevin has figured out how to escape - we can only hope that his superpowers will prevail again.
Wednesday, April 30, 2008
Tuesday, April 29, 2008
The Good, The Bad & The Ugly
Kevin is actually feeling much better today. The drowsiness has faded (side effect of opiates, usually lasting about 3 days). He was awake all day when I was there and was pretty good with conversation. The PT (physical therapy) folks had him up and walked a loop around the pod. The break-through pain has even lessened some.
The oncologist came by and gave us some bad news. They saw the preliminary results of the PET scan. Full transcripts take 24 hours so they had only the audio in addition to the images. The cancer has spread extensively throughout his body since his last PET 5 months ago. There are numerous new tumors - the pelvis has significant damage and there are suspicious areas in the lower spine. They really want the MRI results before making any recommendations, but said Radiation Therapy was about our only possible option for the pelvis and spine. The big concern right now is if he will qualify for the radiation since he already had radiation on his hip after the replacement and we were told at the time he received maximum (lifetime) dose. The Drs. need to look into this – is this area far enough away from the earlier area - but first they want the MRI…
The MRI was scheduled for late Monday night (~9:00), but Kevin only made it 30 minutes into what is about a 1.5 hour procedure. Having to stay still on the hard flat table became unbearable even though the nurses loaded him up on Dilaudid before being carted over to the scanning area. Kev said it got pretty ugly with the techs trying desperately into talking him into riding it out, but in the end Kev won and they aborted the test. They now have an MRI scheduled for first thing Wednesday morning – this time with assistance from anesthesia. He will have what they call “conscious sedation” – he’ll be able to breathe on his own but for all practical purposes he will be out.
The Palliative Care team also came to see us today. They are concerned about Kev’s delusions and hallucinations - in the middle of conversations he will mix up reality with dreams-like thoughts; in addition he sees things like cats jumping through his window in his periphery vision. Apparently this is not uncommon for opiates, but normally occurs after prolonged usage, so to see these effects after only a couple days is enough to change the course. They removed the MS Contin, Zanaflex (muscle relaxant) and Lyrica (nerve pain) and are putting him on Methadone, 10 mg every 12 hours. He will remain on the Dilaudid (increased now at 3 mg with no time limit) for a few more days as the Methadone ramps up.
Everything is reassessed multiple times throughout the day, but the guess is Kev will remain hospitalized for at least 7-10 days.
The oncologist came by and gave us some bad news. They saw the preliminary results of the PET scan. Full transcripts take 24 hours so they had only the audio in addition to the images. The cancer has spread extensively throughout his body since his last PET 5 months ago. There are numerous new tumors - the pelvis has significant damage and there are suspicious areas in the lower spine. They really want the MRI results before making any recommendations, but said Radiation Therapy was about our only possible option for the pelvis and spine. The big concern right now is if he will qualify for the radiation since he already had radiation on his hip after the replacement and we were told at the time he received maximum (lifetime) dose. The Drs. need to look into this – is this area far enough away from the earlier area - but first they want the MRI…
The MRI was scheduled for late Monday night (~9:00), but Kevin only made it 30 minutes into what is about a 1.5 hour procedure. Having to stay still on the hard flat table became unbearable even though the nurses loaded him up on Dilaudid before being carted over to the scanning area. Kev said it got pretty ugly with the techs trying desperately into talking him into riding it out, but in the end Kev won and they aborted the test. They now have an MRI scheduled for first thing Wednesday morning – this time with assistance from anesthesia. He will have what they call “conscious sedation” – he’ll be able to breathe on his own but for all practical purposes he will be out.
The Palliative Care team also came to see us today. They are concerned about Kev’s delusions and hallucinations - in the middle of conversations he will mix up reality with dreams-like thoughts; in addition he sees things like cats jumping through his window in his periphery vision. Apparently this is not uncommon for opiates, but normally occurs after prolonged usage, so to see these effects after only a couple days is enough to change the course. They removed the MS Contin, Zanaflex (muscle relaxant) and Lyrica (nerve pain) and are putting him on Methadone, 10 mg every 12 hours. He will remain on the Dilaudid (increased now at 3 mg with no time limit) for a few more days as the Methadone ramps up.
Everything is reassessed multiple times throughout the day, but the guess is Kev will remain hospitalized for at least 7-10 days.
Sunday, April 27, 2008
Into the ER
The pain in Kev’s back and legs has continued to bother him – some days were better than others, but mostly it was manageable. The x-ray results a couple weeks ago didn’t show anything that could explain it so he just continued on, taking the pain meds (hydrocodone) when needed. On Friday he was scheduled for his 2nd treatment of Ipilimumab, but we never made it - ending up in the ER instead.
MDA has a standard pain chart – 1 (smiley face – no pain) to 10 (unimaginable pain). At every appointment he is asked about his pain level. Of course it’s all relative and each patient would rate the same pain differently, but none the less it gives them something to start with. Usually Kev responds 2-3; and even when the cancer invaded Kevin’s hip bone and he was unable to put any weight on his leg, his rating never exceeded 7. On Friday he told the ER staff his pain was at 8-9. He received a bed pretty quick and they had him set up with an IV of fluids and some fast acting pain meds (dilaudid). New x-rays were run, but again they didn’t show anything so it was decided to go ahead and admit him.
Unfortunately the hospital was full and there were people in the ER that had spent the previous night there because no beds were available upstairs- they were in the queue ahead of us, but luckily we did get a room later that night at about 9:00pm. Kevin’s oncologist was not in on Friday due to a “family emergency”, so we have not seen him yet. But the Dr who works with him spoke with us yesterday and today. In addition, the palliative care Drs came in today to assess his pain meds and increased things a bit (currently taking MS Contin 30mg every 8 hrs & Dilaudid 2mg every 2 hrs). He is fairly comfortable now (albiet pretty heavily sedated) with pain level ~5. There’re a couple theories as to what’s causing this being tossed around – one is that this is progression of the cancer with possible new tumors in the lower spine; the other is that there may be something amiss with his intestines (likely caused by the Ipilimumab treatment). They took scans this afternoon for the intestines (no results yet) and they’re planning on running a PET and MRI of his lower spine on Monday. He still has no appetite but he’s getting all his nutrition through IV now so no one is too worried about that. Nobody is giving us any timeline beyond getting scans, but there have been hints he may be here for at least a week.
MDA has a standard pain chart – 1 (smiley face – no pain) to 10 (unimaginable pain). At every appointment he is asked about his pain level. Of course it’s all relative and each patient would rate the same pain differently, but none the less it gives them something to start with. Usually Kev responds 2-3; and even when the cancer invaded Kevin’s hip bone and he was unable to put any weight on his leg, his rating never exceeded 7. On Friday he told the ER staff his pain was at 8-9. He received a bed pretty quick and they had him set up with an IV of fluids and some fast acting pain meds (dilaudid). New x-rays were run, but again they didn’t show anything so it was decided to go ahead and admit him.
Unfortunately the hospital was full and there were people in the ER that had spent the previous night there because no beds were available upstairs- they were in the queue ahead of us, but luckily we did get a room later that night at about 9:00pm. Kevin’s oncologist was not in on Friday due to a “family emergency”, so we have not seen him yet. But the Dr who works with him spoke with us yesterday and today. In addition, the palliative care Drs came in today to assess his pain meds and increased things a bit (currently taking MS Contin 30mg every 8 hrs & Dilaudid 2mg every 2 hrs). He is fairly comfortable now (albiet pretty heavily sedated) with pain level ~5. There’re a couple theories as to what’s causing this being tossed around – one is that this is progression of the cancer with possible new tumors in the lower spine; the other is that there may be something amiss with his intestines (likely caused by the Ipilimumab treatment). They took scans this afternoon for the intestines (no results yet) and they’re planning on running a PET and MRI of his lower spine on Monday. He still has no appetite but he’s getting all his nutrition through IV now so no one is too worried about that. Nobody is giving us any timeline beyond getting scans, but there have been hints he may be here for at least a week.
Sunday, April 06, 2008
We're in...
The appt on Friday went well enough. Kev was accepted into the Ipilimumab trial.
For some info on the trial follow this link:
http://utm-ext01a.mdacc.tmc.edu/dept/prot/clinicaltrialswp.nsf/Index/2007-0730
For Ipilimumab info in general:
http://www.medicalnewstoday.com/articles/73258.php
We discussed the persistent pain in his right leg/hip, but the CT scans didn’t go “low” enough – so no info was gained from that. An X-ray was ordered and we should get results on Monday. On Sat evening he went in for his first treatment. It’s an IV infusion (10mg/kg) that drips over a few hours and then followed by an hour of observations. MD Anderson is the best in trying to provide some level of comfort to their patients. Like in past times he get a private room, can watch TV (Star Wars episode II was playing on Spike) and volunteers come by offering sandwiches, chips & cookies from a cart. Usually Kev is feeling so bad he hasn’t benefited from these perks, but last night he enjoyed the movie and dinner. In addition it’s possible to order from a patient menu. MDA has gone above and beyond expelling the “hospital food” myth – where else can patients order chocolate milkshakes (made with real ice cream), Belgium waffles (with fresh berries and whip cream) or stuffed shrimp with lobster cream sauce!
The treatments are every three weeks with no home meds – what a relief after spending a year with weekly (& sometimes 2-3x/week) appts and daily meds to keep track of. We are very much looking forward to this holiday from appts and treatments and with some luck Kev will hopefully be spared from the more detrimental side effects. And what will we do with all the money we’ll save from parking and gas? Parking is $12/visit – last year I calculated we spent over $5,000 on parking and gas alone!! …Well when one looks for answers, one usually finds answers…our son Nick comes running into the house after breakfast this morning yelling “what’s running? - turn off the water!” Apparently a pipe burst (by the looks of things probably a few days ago) and water was spraying all over under the house. Unfortunately our daughter, Kelden had just started a shower that was abruptly interrupted. Even a relocation to the other bathroom that was “downstream” of the damage didn’t work – meaning there was damage and a clog! Why do these things always seem to happen on Sundays? All of this chaos didn’t seem to faze Kev at all – good thing I have volunteered to channel all levels of stress through me thereby saving him any worry…. Nick seemed confident that he could replace the pipe himself so he and Kev set off to Home Depot…what will I ever do when he goes off to college? Of course this was just another band-aid on a much bigger failing plumbing system..the parallels between Kev's chronic disease and that of our ailing 107-year-old house are beyond comical at times.
And you probably noticed a new blog design! – sort of a virtual redecorating. After nearly 2 years using a “standard template” I have ventured into a custom look. Kelden loves to play around with Photoshop and html etc so she has helped me with the new look. It’s still a work in process, but is definitely coming along. And I'll be adding more pictures too! I love the panoramic of the Rockies.
For some info on the trial follow this link:
http://utm-ext01a.mdacc.tmc.edu/dept/prot/clinicaltrialswp.nsf/Index/2007-0730
For Ipilimumab info in general:
http://www.medicalnewstoday.com/articles/73258.php
We discussed the persistent pain in his right leg/hip, but the CT scans didn’t go “low” enough – so no info was gained from that. An X-ray was ordered and we should get results on Monday. On Sat evening he went in for his first treatment. It’s an IV infusion (10mg/kg) that drips over a few hours and then followed by an hour of observations. MD Anderson is the best in trying to provide some level of comfort to their patients. Like in past times he get a private room, can watch TV (Star Wars episode II was playing on Spike) and volunteers come by offering sandwiches, chips & cookies from a cart. Usually Kev is feeling so bad he hasn’t benefited from these perks, but last night he enjoyed the movie and dinner. In addition it’s possible to order from a patient menu. MDA has gone above and beyond expelling the “hospital food” myth – where else can patients order chocolate milkshakes (made with real ice cream), Belgium waffles (with fresh berries and whip cream) or stuffed shrimp with lobster cream sauce!
The treatments are every three weeks with no home meds – what a relief after spending a year with weekly (& sometimes 2-3x/week) appts and daily meds to keep track of. We are very much looking forward to this holiday from appts and treatments and with some luck Kev will hopefully be spared from the more detrimental side effects. And what will we do with all the money we’ll save from parking and gas? Parking is $12/visit – last year I calculated we spent over $5,000 on parking and gas alone!! …Well when one looks for answers, one usually finds answers…our son Nick comes running into the house after breakfast this morning yelling “what’s running? - turn off the water!” Apparently a pipe burst (by the looks of things probably a few days ago) and water was spraying all over under the house. Unfortunately our daughter, Kelden had just started a shower that was abruptly interrupted. Even a relocation to the other bathroom that was “downstream” of the damage didn’t work – meaning there was damage and a clog! Why do these things always seem to happen on Sundays? All of this chaos didn’t seem to faze Kev at all – good thing I have volunteered to channel all levels of stress through me thereby saving him any worry…. Nick seemed confident that he could replace the pipe himself so he and Kev set off to Home Depot…what will I ever do when he goes off to college? Of course this was just another band-aid on a much bigger failing plumbing system..the parallels between Kev's chronic disease and that of our ailing 107-year-old house are beyond comical at times.
And you probably noticed a new blog design! – sort of a virtual redecorating. After nearly 2 years using a “standard template” I have ventured into a custom look. Kelden loves to play around with Photoshop and html etc so she has helped me with the new look. It’s still a work in process, but is definitely coming along. And I'll be adding more pictures too! I love the panoramic of the Rockies.
Wednesday, April 02, 2008
Take Two
Kev goes back in for scans again tomorrow – CT and MRI are needed for baseline before he can start the new treatment - Ipilimumab. (This is where we were 5 weeks ago when the brain tumor showed up and everything was diverted to take care of that.) Then an appt with the oncologist on Friday to get the OK and we’re back on track.
He has been complaining about his back a lot recently and he is moving pretty slow. It makes me nervous that there may be a reoccurrence in his bones – hip/spine area. Although getting scans again so soon is a pain – literally – fasting for 6 hours prior, endless hours in the waiting room, the barium cocktail, & enema and iodine injection followed by another hour on the table laying perfectly still – it will be a relief to know the back pain is just part of normal everyday aches.
I needed to pull a summary of Kev’s medical visits last year (2007) for the insurance company and it was staggering to see he had more than 150 doctor appointments last year – it did seem like he was up at MD Anderson almost every other day…hmmm…just about true.
He has been complaining about his back a lot recently and he is moving pretty slow. It makes me nervous that there may be a reoccurrence in his bones – hip/spine area. Although getting scans again so soon is a pain – literally – fasting for 6 hours prior, endless hours in the waiting room, the barium cocktail, & enema and iodine injection followed by another hour on the table laying perfectly still – it will be a relief to know the back pain is just part of normal everyday aches.
I needed to pull a summary of Kev’s medical visits last year (2007) for the insurance company and it was staggering to see he had more than 150 doctor appointments last year – it did seem like he was up at MD Anderson almost every other day…hmmm…just about true.
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