It's been a tough 11 days, I'll admit. Friday evening, September 19th, after a wonderful meal of barbecued ribs and potato salad, Robert fell down the basement steps while fetching a pie for dessert. He was in the ICU for two days with fractured skull, blood in his brain, a couple of fractured spinal transverse processes and bangs, bumps and bruises everywhere that wasn't actually broken. He came home Monday evening, the 22nd. He's still having a lot of pain, but is gradually increasing his activities. Good thoughts for him are much appreciated, as it will be another 4-6 weeks before he really starts feeling like himself again.
The Free to Breathe walk on Sunday, September 21st was great. I walked with my father, Lindsay, Jacob, Jeni, Hannah, Philip, a friend of Philip's and two nurses from my hospital. I spoke briefly to the crowd to fire everyone up before we set off. The weather was beautiful and my team raised well over $6000 - thank you to all of you who donated! There were over 500 participants and over $47,000 raised for lung cancer research.
My Tarceva rash really became uncomfortable on Monday and I called for some topical Clindamycin. I didn't feel very well on Monday - got dizzy feeding the animals and threw up before work. I think I may have been starting off a little dehydration after the walk in the sun. I saw the doctor on Tuesday and he started Minocin for the rash and Augmentin because I had a wee fever on Tuesday morning. By Wednesday night I was having watery stools and by Thursday I was pretty constantly nauseated and not feeling well. I talked to the nurse on Friday and started Lomotil. I went home from work early on Friday and napped during slow days on Saturday and Sunday. Sunday evening I developed an awful metallic taste in my mouth and by the time I got to work yesterday I was truly miserable with nausea and dizziness. I had skipped my Sunday evening and Monday morning doses of Augmentin. I called the nurse. She yelled at me and made me come in for some IV fluids.
Today the taste is almost gone, the nausea is manageable and the diarrhea is better. I think the Augmentin was the major culprit for my misery but this Tarceva is no picnic. Lindsay is coming up tomorrow to help me figure out some sort of makeup regimen that will allow me to look a little less horrifying. I only have Friday to work clinically this week. My mother and sister come next week, so I'm hoping that by mid-October we'll all be feeling a little more like ourselves.
Before anyone yells at me about not calling for help, there's really not anything anyone could have done for us. I've got to adjust to the Tarceva and Robert just has to recover. So it's been a not very good 11 days but I'm hoping for much better to come.
Keep the good thoughts coming.
Lisa
Tuesday, September 30, 2008
Friday, September 19, 2008
What's Up With the Doc 25? - Cancer Complicates Everything
It's been an interesting 10 days since my last update. I started Tarceva on Thursday, September 11. On Friday my neck started hurting. More than a little. So I took Ibuprofen and even a dose of oxycodone over the weekend. Sunday saw the first red splotches on my face. The neck pain was no better on Monday morning so I called the oncologist and said, "Good news! Rash! Bad news! Neck pain!" Basically, once you have cancer every little stupid thing makes you worry that the cancer is progressing (or coming back, if you've been lucky enough to beat it completely into submission). He ordered MRI scans of my cervical and thoracic spines, which were done at 6am! on Tuesday. I actually wound up spending 105 minutes inside the scanner and by the time I was done, not only was my neck hurting but my old cancer related back pain was back and my shoulder was a little achy. Bleargh! The scan results actually DID demonstrate a metastatic lesion in my 5th cervical vertebral body, but before you get too disappointed, my oncologist and I don't think it's a) the cause of my pain, or b) necessarily new. It's a small, polite little metastasis, completely encased in the vertebral body. It hasn't broken through bone endplates and isn't threatening vital structures. I have never had an MRI of my cervical spine before and this is small enough that it could easily not have been picked up on the PET scan in March. So, really, not as bad as it sounds since we already knew I had metastatic disease. Changing treatment time is a hard time - we knew my cancer responded to the traditional chemotherapy. We knew it acted pretty aggressively before we started chemo. We're all worried that it will go a little crazy if the Tarceva doesn't work on it so the neck pain made me worry that that was happening. But it really, really doesn't seem like that's the case. The scan DID show herniated discs at C5-6 and C6-7. Especially the C6-7 disc DOES correlate with the location of my pain and I have to assume that's where it's coming from. How did I manage to herniate two cervical discs? Jumping around like an idiot at volleyball games is the only thing I can think of. Whatever. The pain is easily controlled with moderate doses of Ibuprofen so that's what I'm doing.
That was during the day on Tuesday. Tuesday night Hannah's volleyball team fought hard in a losing campaign against East Haven (1-3). Hannah came home in pain and told me that she had hurt her thumb in the third games. To make a very long story shorter, she gave herself a gamekeeper's thumb - pulled a little chip of bone off the lower thumb bone by pulling too hard on the ligament that holds that joint together. She was adamant that she wanted to keep playing (this is her left hand, not her hitting/serving hand) and her dad and I agreed that she wouldn't do herself any significant harm as long as she was able to tolerate the pain. So she went to the trainer to have her thumb taped for the Wednesday night match (also a losing campaign against Shelton, 0-3). Swelling and pain were a little worse after the match, but she played well and satisfied herself that she's not going to lose the rest of her season over this. Which was all good news, but by the time I went to bed Wednesday night my old friend the right shoulder had gone ballistic. I honestly cannot think of anything I did to it to bring on this awful pain again. It happened in August, about four weeks after it was injected and I was worried that I would have to have it injected again before the cruise, but with Ibuprofen and a little phonophoresis and electrical stimulation from my friendly PT it cleared up after about 4 days and had been pain-free until Wednesday. Once again it went from 0 to 10 in a couple of hours and I needed oxycodone for sleep Wednesday night. Thursday I visited the PT for more phono/e stim. And today it's about 50% better. I can't even begin to figure out what's going on with this shoulder but it's given me more pain and grief since February than cancer and chemo have.
As the last great insult, I have come down with Robert's nasty cold. It's just a cold, but cancer complicates everything so I have to be on the lookout for any sign of pneumonia, sinus infection, etc. Meanwhile I'm snotty, achy and have a very sore throat. Again, bleargh.
The Tarceva rash has become progressively worse since Sunday morning - I now have painful pustules across my chin, around my nose and scattered across my scalp. The remainder of my head, face, neck, upper chest and back are covered with blotchy red bumps. So, yay! Right? I will see the oncologist for labs on Tuesday and first scan on Tarceva will be sometime around October 21.
Meanwhile, the Free to Breathe Run/Walk is Sunday in Glastonbury. I am doing an interview on the Mary Jones Show (local AM radio) in 15 minutes and I think an on camera interview on Saturday morning for WTNH Channel 8 to promote the fundraiser. I'm still trying to collect donations to meet my goal. I'm pretty close! Lindsay and Jacob are coming up to walk with me. Robert, Hannah and Philip are also walking with me. My dad and stepmother are coming up to walk with me and some friends from work are walking as well. I can't tell you how much I appreciate all the support.
So I think that covers the last 10 days. Eventful but not so much from a cancer standpoint. Keep rooting for my Tarceva, donate for the race if you haven't already (www.firstgiving.org/lisawoody), and enjoy every day. We're starting to feel just a little fall nip in the air and have turned off the air conditioner. How great is it that I'm about to enjoy another spectacular New England autumn?
Lisa
That was during the day on Tuesday. Tuesday night Hannah's volleyball team fought hard in a losing campaign against East Haven (1-3). Hannah came home in pain and told me that she had hurt her thumb in the third games. To make a very long story shorter, she gave herself a gamekeeper's thumb - pulled a little chip of bone off the lower thumb bone by pulling too hard on the ligament that holds that joint together. She was adamant that she wanted to keep playing (this is her left hand, not her hitting/serving hand) and her dad and I agreed that she wouldn't do herself any significant harm as long as she was able to tolerate the pain. So she went to the trainer to have her thumb taped for the Wednesday night match (also a losing campaign against Shelton, 0-3). Swelling and pain were a little worse after the match, but she played well and satisfied herself that she's not going to lose the rest of her season over this. Which was all good news, but by the time I went to bed Wednesday night my old friend the right shoulder had gone ballistic. I honestly cannot think of anything I did to it to bring on this awful pain again. It happened in August, about four weeks after it was injected and I was worried that I would have to have it injected again before the cruise, but with Ibuprofen and a little phonophoresis and electrical stimulation from my friendly PT it cleared up after about 4 days and had been pain-free until Wednesday. Once again it went from 0 to 10 in a couple of hours and I needed oxycodone for sleep Wednesday night. Thursday I visited the PT for more phono/e stim. And today it's about 50% better. I can't even begin to figure out what's going on with this shoulder but it's given me more pain and grief since February than cancer and chemo have.
As the last great insult, I have come down with Robert's nasty cold. It's just a cold, but cancer complicates everything so I have to be on the lookout for any sign of pneumonia, sinus infection, etc. Meanwhile I'm snotty, achy and have a very sore throat. Again, bleargh.
The Tarceva rash has become progressively worse since Sunday morning - I now have painful pustules across my chin, around my nose and scattered across my scalp. The remainder of my head, face, neck, upper chest and back are covered with blotchy red bumps. So, yay! Right? I will see the oncologist for labs on Tuesday and first scan on Tarceva will be sometime around October 21.
Meanwhile, the Free to Breathe Run/Walk is Sunday in Glastonbury. I am doing an interview on the Mary Jones Show (local AM radio) in 15 minutes and I think an on camera interview on Saturday morning for WTNH Channel 8 to promote the fundraiser. I'm still trying to collect donations to meet my goal. I'm pretty close! Lindsay and Jacob are coming up to walk with me. Robert, Hannah and Philip are also walking with me. My dad and stepmother are coming up to walk with me and some friends from work are walking as well. I can't tell you how much I appreciate all the support.
So I think that covers the last 10 days. Eventful but not so much from a cancer standpoint. Keep rooting for my Tarceva, donate for the race if you haven't already (www.firstgiving.org/lisawoody), and enjoy every day. We're starting to feel just a little fall nip in the air and have turned off the air conditioner. How great is it that I'm about to enjoy another spectacular New England autumn?
Lisa
Tuesday, September 9, 2008
What's Up With the Doc 24? - Tarceva It Is
9/9/08
Robert and I went to see the oncologist this morning to figure out where we go next. The oncologist spent last week going over scans with radiologists and talking to the Sloan Kettering thoracic oncologist while Robert and I were in Alaska. We all agree that the scan after the 8th cycle of Carboplatin/Taxol/Avastin shows stable disease when compared to the one done after the 6th cycle. Choices going forward include continuing the Carbo/Taxol/Avastin (nobody's leaning in this direction - I've already had 2 more cycles than customary, the neuropathy was getting a little worse with each cycle and all the oncologists we've talked to on go on for more than 6 cycles with continued clear evidence of response, meaning tumor shrinkage and not just stable disease), continuing Avastin as a single agent, continuing Avastin and adding Tarceva, stopping everything and waiting until clear evidence of progression to add Tarceva or switching to Tarceva as single agent second line therapy now. My oncologist doesn't want to continue the Avastin to progression because he'd like to be able to use it again in the future if necessary and none of us want to stop everything right now. Probably the biggest change in lung cancer in the last year has been the move to go directly from first line treatment to second line treatment without waiting for evidence of progression. The reason for this is that you lose the opportunity to use second line treatment on about 1/3 of patients because they get too sick while waiting for evidence of progression to tolerate second line treatment. So my oncologist wants to try Tarceva "on a short leash," meaning frequent CT scans and even more frequent liver function tests to make sure everything isn't going to pot. He's worried that I may not respond to the Tarceva because my tumor is negative for the gene mutation that is supposed to be associated with good response. My reading of the literature is that there really isn't that good an association between the mutation and response. I may not see tumor shrinkage, but I'm hoping that the Tarceva will keep things stable where they are. There is one recent study of long term (>4 years) responders to the class of drug that includes Tarceva and most of those long term survivors do not have the genetic mutation.
I've read everything that I can find about Tarceva and plan to do everything that I can to have the best chance of a good result. I stopped Protonix last week and, lo and behold, without chemotherapy to eat up the lining of my gastrointestinal tract, no heartburn! Tarceva is dependent on an acid environment for optimal absorption so proton pump inhibitors like Protonix are contraindicated. I will set an alarm for 5 am every day to take the medication. You are supposed to take it at the same time every day and wait for at least an hour to eat or take other medications. I'll keep it at the bedside so I shouldn't have to really wake up to take it. A rash which looks like but isn't acne involving the face and scalp is common and strongly associated with tumor response. That kind of sucks but I'm accustomed to looking a little weird by now. At least I should get my eyebrows and eyelashes back!. Last but not least I'm armed with Immodium and Lomotil, as fairly bad diarrhea is the other common side effect of Tarceva.
So enough about cancer. On with the trip report!
Robert and I flew nonstop from JFK to Vancouver, BC on Sunday, August 31. We took the Norwegian Cruise Line transfer to our ship, the Norwegian Sun, at Canada Place. This was a first cruise for both of us and we were pretty blown away by the ship. We had lunch in the Seven Seas restaurant
and then went to our stateroom to unpack. We pulled away from Vancouver at about 5:30 pm. The view was spectacular -
the weather was gorgeous on Sunday after a week of pretty constant rain. We had dinner and checked out the on board casino.
Monday morning we had breakfast in the Seven Seas restaurant and agreed to share a table. We were lucky enough to meet Zel and George, Canadians who have done this cruise before and happily responded to Robert's inquiry about playing bridge. We shared much of the remainder of the cruise with them playing bridge, gambling at the casino, riding the train in Skagway and eating in the restaurants. They gave us great pointers about cruising, improved our bridge game as much as is possible in a week with such miserable starting material and convinced us to play Three Card Poker rather than slots and Let It Ride. My two straight flushes and three deuces helped us stretch our gambling stake for the entire week. They didn't do too badly, either!
Tuesday we docked in Ketchikan.
We got out and walked around the town (Sorry, Sam, this is the closest I got to getting a picture of a moose for you).
There is a salmon hatchery in town and we were lucky enough to be there during the salmon run so we got to watch those wacky salmon throwing themselves at the rapids to get upstream.
Wednesday we docked in Juneau and we took a bus to the Mendenhall Glacier.
Wow. I've never seen a glacier before and it was just stunning.
We tried to miss the bus because I made Robert take a little 3/4 mile hike. We were 2 minutes late getting back to the bus but the driver didn't leave without us. Many stink eyes were sent our way by the other passengers, though.
Wednesday afternoon the captain took the ship up Tracy Arm toward Sawyer's Glacier.
There was so much ice in the water that he couldn't get much closer than about three miles from the glacier but, again, it was spectacular. We had a balcony stateroom and I was smart enough to bring my quilt so I could sit out on the balcony to enjoy the scenery.
Thursday we docked in Skagway and took the narrow gauge railroad up almost 3000 feet to the US/Canadian border. We saw remnants of the trail that the gold stampeders took to get to the Yukon and, again, the scenery was spectacular.
Friday was clear sailing. We went to a virtual behind the scenes tour of the ship, which was pretty amazing. Thrusters, stabilizers, rudders, engines - the sheer enormity of running the ship and provisioning for 2200 passengers was amazing! Saturday we went through the Inside Passage again and docked in Vancouver at about 7 am on Sunday. We had an uneventful trip to the airport and through customs and got into JFK at about 11:45 pm Sunday night, exhausted but as happy as we could possibly be with our trip.
I was at work bright and early yesterday morning, Hannah's first volleyball game of the high school season is tonight and our friends Philip and Irene arrive from Oregon on Friday. The Free to Breathe Walk in Glastonbury is Sunday, September 21st. If you haven't had to opportunity to visit my fundraising page for the walk, please do and consider sponsoring me. Just about the only thing any of us can do to give me and everyone else with lung cancer better chances than the dismal ones we have right now is spur research. That's what this walk is for, so we're going for it. Please send the link on to anyone you think might be interested in contributing.
So that's where things stand in the Doc's world today. I feel spectacular - my energy level is pretty much normal, my toes are just a little tingly, I only gained 5 pounds on the cruise and Tarceva is covered by my prescription plan. What else could I possibly hope for?!
Lisa
Robert and I went to see the oncologist this morning to figure out where we go next. The oncologist spent last week going over scans with radiologists and talking to the Sloan Kettering thoracic oncologist while Robert and I were in Alaska. We all agree that the scan after the 8th cycle of Carboplatin/Taxol/Avastin shows stable disease when compared to the one done after the 6th cycle. Choices going forward include continuing the Carbo/Taxol/Avastin (nobody's leaning in this direction - I've already had 2 more cycles than customary, the neuropathy was getting a little worse with each cycle and all the oncologists we've talked to on go on for more than 6 cycles with continued clear evidence of response, meaning tumor shrinkage and not just stable disease), continuing Avastin as a single agent, continuing Avastin and adding Tarceva, stopping everything and waiting until clear evidence of progression to add Tarceva or switching to Tarceva as single agent second line therapy now. My oncologist doesn't want to continue the Avastin to progression because he'd like to be able to use it again in the future if necessary and none of us want to stop everything right now. Probably the biggest change in lung cancer in the last year has been the move to go directly from first line treatment to second line treatment without waiting for evidence of progression. The reason for this is that you lose the opportunity to use second line treatment on about 1/3 of patients because they get too sick while waiting for evidence of progression to tolerate second line treatment. So my oncologist wants to try Tarceva "on a short leash," meaning frequent CT scans and even more frequent liver function tests to make sure everything isn't going to pot. He's worried that I may not respond to the Tarceva because my tumor is negative for the gene mutation that is supposed to be associated with good response. My reading of the literature is that there really isn't that good an association between the mutation and response. I may not see tumor shrinkage, but I'm hoping that the Tarceva will keep things stable where they are. There is one recent study of long term (>4 years) responders to the class of drug that includes Tarceva and most of those long term survivors do not have the genetic mutation.
I've read everything that I can find about Tarceva and plan to do everything that I can to have the best chance of a good result. I stopped Protonix last week and, lo and behold, without chemotherapy to eat up the lining of my gastrointestinal tract, no heartburn! Tarceva is dependent on an acid environment for optimal absorption so proton pump inhibitors like Protonix are contraindicated. I will set an alarm for 5 am every day to take the medication. You are supposed to take it at the same time every day and wait for at least an hour to eat or take other medications. I'll keep it at the bedside so I shouldn't have to really wake up to take it. A rash which looks like but isn't acne involving the face and scalp is common and strongly associated with tumor response. That kind of sucks but I'm accustomed to looking a little weird by now. At least I should get my eyebrows and eyelashes back!. Last but not least I'm armed with Immodium and Lomotil, as fairly bad diarrhea is the other common side effect of Tarceva.
So enough about cancer. On with the trip report!
Robert and I flew nonstop from JFK to Vancouver, BC on Sunday, August 31. We took the Norwegian Cruise Line transfer to our ship, the Norwegian Sun, at Canada Place. This was a first cruise for both of us and we were pretty blown away by the ship. We had lunch in the Seven Seas restaurant
and then went to our stateroom to unpack. We pulled away from Vancouver at about 5:30 pm. The view was spectacular -
the weather was gorgeous on Sunday after a week of pretty constant rain. We had dinner and checked out the on board casino.
Monday morning we had breakfast in the Seven Seas restaurant and agreed to share a table. We were lucky enough to meet Zel and George, Canadians who have done this cruise before and happily responded to Robert's inquiry about playing bridge. We shared much of the remainder of the cruise with them playing bridge, gambling at the casino, riding the train in Skagway and eating in the restaurants. They gave us great pointers about cruising, improved our bridge game as much as is possible in a week with such miserable starting material and convinced us to play Three Card Poker rather than slots and Let It Ride. My two straight flushes and three deuces helped us stretch our gambling stake for the entire week. They didn't do too badly, either!
Tuesday we docked in Ketchikan.
We got out and walked around the town (Sorry, Sam, this is the closest I got to getting a picture of a moose for you).
There is a salmon hatchery in town and we were lucky enough to be there during the salmon run so we got to watch those wacky salmon throwing themselves at the rapids to get upstream.
Wednesday we docked in Juneau and we took a bus to the Mendenhall Glacier.
Wow. I've never seen a glacier before and it was just stunning.
We tried to miss the bus because I made Robert take a little 3/4 mile hike. We were 2 minutes late getting back to the bus but the driver didn't leave without us. Many stink eyes were sent our way by the other passengers, though.
Wednesday afternoon the captain took the ship up Tracy Arm toward Sawyer's Glacier.
There was so much ice in the water that he couldn't get much closer than about three miles from the glacier but, again, it was spectacular. We had a balcony stateroom and I was smart enough to bring my quilt so I could sit out on the balcony to enjoy the scenery.
Thursday we docked in Skagway and took the narrow gauge railroad up almost 3000 feet to the US/Canadian border. We saw remnants of the trail that the gold stampeders took to get to the Yukon and, again, the scenery was spectacular.
Friday was clear sailing. We went to a virtual behind the scenes tour of the ship, which was pretty amazing. Thrusters, stabilizers, rudders, engines - the sheer enormity of running the ship and provisioning for 2200 passengers was amazing! Saturday we went through the Inside Passage again and docked in Vancouver at about 7 am on Sunday. We had an uneventful trip to the airport and through customs and got into JFK at about 11:45 pm Sunday night, exhausted but as happy as we could possibly be with our trip.
I was at work bright and early yesterday morning, Hannah's first volleyball game of the high school season is tonight and our friends Philip and Irene arrive from Oregon on Friday. The Free to Breathe Walk in Glastonbury is Sunday, September 21st. If you haven't had to opportunity to visit my fundraising page for the walk, please do and consider sponsoring me. Just about the only thing any of us can do to give me and everyone else with lung cancer better chances than the dismal ones we have right now is spur research. That's what this walk is for, so we're going for it. Please send the link on to anyone you think might be interested in contributing.
So that's where things stand in the Doc's world today. I feel spectacular - my energy level is pretty much normal, my toes are just a little tingly, I only gained 5 pounds on the cruise and Tarceva is covered by my prescription plan. What else could I possibly hope for?!
Lisa
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