We spent part of the weekend talking about what to do -- go for the 2nd line chemo even though the 1st line failed, or bail on the high tech medical route and focus on strengthening my own defenses. We talked with all the kids -- Mara & Ellie wanting to try anything that might possibly work, Hamilton & Chris opting for an end to the chemo route. I didn't really get to talk to Jayson, working 14-hour days in the Colorado back-country, until Monday night, after the decision was made.
In the end, we opted to forgo any chemo. I am still relatively symptom free, thank goodness. And I realized I had absolutely no faith the 2nd line chemo would do anything, except make me tired. I think it is important to believe what you are doing will work, and I sure didn't believe it would help.
The other part of the decision, for me, that Tony helped clarify, is that I don't like the passive patient role, being done to, having the drugs infused, being poked & scanned. Anyone who knows me even the slightest bit knows passivity is not my thing. I like to take charge, to have a sense of control. So I am working on some diet modification (I really can't abide a full macrobiotic diet, in large part because of what you can't eat, not what you eat), and I've already booked with my personal trainer a slew of almost daily half-hour sessions, to build up my strength & stamina.
Then, Leo sun-worshiper that I am, we booked two weeks in Florida in early January and also took a deep breath and committed to a month in February, hoping I'll be in shape for it. Both trips certainly give me something to look forward to, and various kids may come visit some. We are hoping Mara will come with us for February. (She'll probably use our Jan. trip to go back to Austin & close up her apt., put her stuff in storage, and drive her car back here.)
We will meet with Dr. Sunkin Monday to get a copy of my chart to have with me in Florida & to discuss any symptom control measures he might suggest. He didn't argue our decision at all.
Having made the decision, I felt the most energetic I've felt in months on Monday, and I still feel good today, Tuesday. Tony & I have talked over the years about how difficult it is to get off the high-tech medical track once you get on it, whatever the disease. It feels good to recognize that this is the right time to step away from it. I certainly don't feel like I am giving up, by any means. I feel instead like I am taking control and it is very energizing. We may return to high tech medical treatment at some point in the future, for symptom control. I don't feel like we've slammed the door shut forever, but closed it gently for now.
Tuesday, December 22, 2009
Sunday, December 20, 2009
A Dilemma
It is Sunday afternoon, looking back on a busy, difficult week -- full of doctors & tests, not my favorite way to spend my time.
We saw Dr. Sunkin, our oncologist, Wednesday morning. It would have been before the fourth chemo, but with the PET scan report, that chemo is out of the question, simply not working. His nurse, who takes my blood pressure, weighs me, etc., took one look at the PET report and said, "Oh my god," and immediately came over and gave me a big hug and kiss. It was very sweet and reflective, I thought, that results like that are fairly rare.
Sunkin was very happy we were trying to get to the thoracic oncologists at Sloan Kettering for a second opinion. In fact, Tony had to push him to tell us what he would do next. He seemed to want to wait for the Sloan visit, but we wanted his take, too. His move: Alimta every three weeks (it's a 15-minute infusion, with fatigue as main side effect). He'd do two rounds and then scan to see if it is working. It works differently than the chemo I've already had, so whether it might be successful, who knows. In one study I read, it extended life 4 months in 30% of the patients, but it didn't say how many of those patients were failed first-line chemo like I am.
I pushed Sunkin for a prognosis, given the situation. He finally reluctantly said 3-6 months.
He also wanted another brain MRI, since that is a common place for lung cancer metastasis. So after getting out the door by 8:30 a.m. Wed. for the Sunkin appointment, I was out the door Thursday by 8 a.m. for the MRI. Bless Mara got up early to drive me, since Tony had two appointments he really couldn't cancel, having to do with final decisions about new health insurance.
I forgot that the MRI is a little difficult for someone who has a tendency to claustrophobia, and unlike the first one I had a couple of months ago, the tech didn't ask about that. So I had to hit the panic button 20 seconds in, come out of the machine, sit up, have some water, compose myself, and then go back in for the 20 minutes of testing. Once again I played golf in my head. I'm not sure how long I can hold onto those images....
Meanwhile, we still had no firm appointment at Sloan. They had promised to put us in a cancellation. So Tony called again and verbally stamped his feet, getting me to the top of the waiting list of about 10 patients. Several hours later they called back to say we could come the next day, Friday, at 8:15 a.m. They had already received all my scans, biopsy slides, chart, etc.
So we went into the city Thursday evening in time to have dinner with my mother, where we would stay. Ellie met us there for dinner, which was a real treat to see her. My mother, on the other hand, was not a real treat. She is 90, has some non-life-threatening health issues of her own (a Parkinson's like syndrome that makes walking difficult & can affect her balance), and I think she is very frightened to see her care-giver daughter die before she does. But her way of expressing it was to greet me with anger and hostility. Not exactly what I needed. So I tried to raise the real issues with her. Not sure I got through, though.
So then on to Sloan Friday morning, taken over by a great corporate car service that Ellie arranged for us. Interesting how different Sloan is than St. Peter's, much more upscale patients, NY Times all over the waiting room along with snacks & drinks. The thing that impressed me the most was their obvious understanding of cancer patients: the elevators all had two-seat benches, so I didn't have to lean against the wall, I could actually sit. Eleven floors in the out-patient building with each floor devoted to a different cancer.
In the end, though, the Sloan doctors had no magic in their tool box. They thought my case was unusual in its aggressiveness & lack of response to the chemo. But they too recommended Alimta on same schedule as Sunkin. They thought I could wait on the single brain lesion (you didn't really think the brain MRI would be clean, did you?)and it could be treated with a single stereostatic beam radiation at some point, if it became symptomatic. Down the road, I could have radiation for symptom control in the left lung. They were not at all concerned about the "little nodules" elsewhere.
They refused to give me a prognosis, saying there are just too many variables. They saw no reason to switch treatment to Sloan, that Sunkin would do exactly what they would. The doc said she uses Alimta "like water" there and that 10% of the patients respond, but again, that probably includes those who were successful on the first-line chemo.
So now we are faced with a dilemma: do we try the Alimta, even though the odds are so poor (Chris, my hospice case manager son, thinks the odds for me are probably around 1 or 2%) or do we call it quits, while I am still pretty symptom free and just focus on using the remaining time well. We are quite conflicted about it and so are polling all five kids to see what they think. So far we are 2 for Alimta (Ellie & Mara), 1 against (Chris, who feels these chemicals damage my own natural ability to fight the cancer, so there is a real downside beyond the side-effects).
Meanwhile, the one piece of good news we got last week was that the place right near the beach in Florida that I had booked for the month of Feb. last August, then cancelled when I was diagnosed, is still available. So we'll probably move ahead with that. But we are a little concerned about how far away Feb. feels, so we are also looking at two weeks in early Jan. for a quick hit of sun & warmth & sand -- all life-giving to this Leo.
I'll let you know what we decide. And I welcome your comments.
We saw Dr. Sunkin, our oncologist, Wednesday morning. It would have been before the fourth chemo, but with the PET scan report, that chemo is out of the question, simply not working. His nurse, who takes my blood pressure, weighs me, etc., took one look at the PET report and said, "Oh my god," and immediately came over and gave me a big hug and kiss. It was very sweet and reflective, I thought, that results like that are fairly rare.
Sunkin was very happy we were trying to get to the thoracic oncologists at Sloan Kettering for a second opinion. In fact, Tony had to push him to tell us what he would do next. He seemed to want to wait for the Sloan visit, but we wanted his take, too. His move: Alimta every three weeks (it's a 15-minute infusion, with fatigue as main side effect). He'd do two rounds and then scan to see if it is working. It works differently than the chemo I've already had, so whether it might be successful, who knows. In one study I read, it extended life 4 months in 30% of the patients, but it didn't say how many of those patients were failed first-line chemo like I am.
I pushed Sunkin for a prognosis, given the situation. He finally reluctantly said 3-6 months.
He also wanted another brain MRI, since that is a common place for lung cancer metastasis. So after getting out the door by 8:30 a.m. Wed. for the Sunkin appointment, I was out the door Thursday by 8 a.m. for the MRI. Bless Mara got up early to drive me, since Tony had two appointments he really couldn't cancel, having to do with final decisions about new health insurance.
I forgot that the MRI is a little difficult for someone who has a tendency to claustrophobia, and unlike the first one I had a couple of months ago, the tech didn't ask about that. So I had to hit the panic button 20 seconds in, come out of the machine, sit up, have some water, compose myself, and then go back in for the 20 minutes of testing. Once again I played golf in my head. I'm not sure how long I can hold onto those images....
Meanwhile, we still had no firm appointment at Sloan. They had promised to put us in a cancellation. So Tony called again and verbally stamped his feet, getting me to the top of the waiting list of about 10 patients. Several hours later they called back to say we could come the next day, Friday, at 8:15 a.m. They had already received all my scans, biopsy slides, chart, etc.
So we went into the city Thursday evening in time to have dinner with my mother, where we would stay. Ellie met us there for dinner, which was a real treat to see her. My mother, on the other hand, was not a real treat. She is 90, has some non-life-threatening health issues of her own (a Parkinson's like syndrome that makes walking difficult & can affect her balance), and I think she is very frightened to see her care-giver daughter die before she does. But her way of expressing it was to greet me with anger and hostility. Not exactly what I needed. So I tried to raise the real issues with her. Not sure I got through, though.
So then on to Sloan Friday morning, taken over by a great corporate car service that Ellie arranged for us. Interesting how different Sloan is than St. Peter's, much more upscale patients, NY Times all over the waiting room along with snacks & drinks. The thing that impressed me the most was their obvious understanding of cancer patients: the elevators all had two-seat benches, so I didn't have to lean against the wall, I could actually sit. Eleven floors in the out-patient building with each floor devoted to a different cancer.
In the end, though, the Sloan doctors had no magic in their tool box. They thought my case was unusual in its aggressiveness & lack of response to the chemo. But they too recommended Alimta on same schedule as Sunkin. They thought I could wait on the single brain lesion (you didn't really think the brain MRI would be clean, did you?)and it could be treated with a single stereostatic beam radiation at some point, if it became symptomatic. Down the road, I could have radiation for symptom control in the left lung. They were not at all concerned about the "little nodules" elsewhere.
They refused to give me a prognosis, saying there are just too many variables. They saw no reason to switch treatment to Sloan, that Sunkin would do exactly what they would. The doc said she uses Alimta "like water" there and that 10% of the patients respond, but again, that probably includes those who were successful on the first-line chemo.
So now we are faced with a dilemma: do we try the Alimta, even though the odds are so poor (Chris, my hospice case manager son, thinks the odds for me are probably around 1 or 2%) or do we call it quits, while I am still pretty symptom free and just focus on using the remaining time well. We are quite conflicted about it and so are polling all five kids to see what they think. So far we are 2 for Alimta (Ellie & Mara), 1 against (Chris, who feels these chemicals damage my own natural ability to fight the cancer, so there is a real downside beyond the side-effects).
Meanwhile, the one piece of good news we got last week was that the place right near the beach in Florida that I had booked for the month of Feb. last August, then cancelled when I was diagnosed, is still available. So we'll probably move ahead with that. But we are a little concerned about how far away Feb. feels, so we are also looking at two weeks in early Jan. for a quick hit of sun & warmth & sand -- all life-giving to this Leo.
I'll let you know what we decide. And I welcome your comments.
Saturday, December 12, 2009
TV Shows
We have stopped watching several TV shows that were once real favorites, because a main character has cancer. It is not exactly entertaining to watch someone grappling with the disease.
So, for instance, we used to like Grey's Anatomy, although the show had already gone down hill last season. It is so hard to sustain good writing, season after season. But this year, with Izzie's ongoing battle with cancer, it is just too much.
The same goes for Brothers & Sisters, another real favorite. I particularly like Sally Field, but when Kalista Flockhart's cancer returned at the beginning of this season, we clicked to another channel. I hope she recovers.
And then last night, I caught the second half of Law & Order, not a show we watch faithfully but one we'll watch occasionally. So I don't know when Lt. Van Beuren's cancer started, but must be a while ago, since she is back at work with a wig. So take that off our 'watch' list.
I am sure these shows' writers feel it adds to the realism to have a character with cancer, but I can't imagine it adds to the entertainment for the millions with cancer. Maybe I'm wrong. Maybe others with cancer appreciate being included. I certainly don't.
Interesting that those with cancer are all women on these shows. Is that because TV men are too strong to get cancer? Do we have sexist disease casting???
So, for instance, we used to like Grey's Anatomy, although the show had already gone down hill last season. It is so hard to sustain good writing, season after season. But this year, with Izzie's ongoing battle with cancer, it is just too much.
The same goes for Brothers & Sisters, another real favorite. I particularly like Sally Field, but when Kalista Flockhart's cancer returned at the beginning of this season, we clicked to another channel. I hope she recovers.
And then last night, I caught the second half of Law & Order, not a show we watch faithfully but one we'll watch occasionally. So I don't know when Lt. Van Beuren's cancer started, but must be a while ago, since she is back at work with a wig. So take that off our 'watch' list.
I am sure these shows' writers feel it adds to the realism to have a character with cancer, but I can't imagine it adds to the entertainment for the millions with cancer. Maybe I'm wrong. Maybe others with cancer appreciate being included. I certainly don't.
Interesting that those with cancer are all women on these shows. Is that because TV men are too strong to get cancer? Do we have sexist disease casting???
Friday, December 11, 2009
Bad News
The PET scan went fine. Only took 90 minutes total, and I didn't cough during the actual scan. They also said we'd have the results by the afternoon.
And sure enough, Dr. Sunkin's physician assistant called mid-afternoon. Her opener was, "This is not the news you want to hear." She was right in spades. She read me the pertinent info: the lung mass is the same size by measurement, although the report says it is larger (she's not sure why the discrepancy); there are "new little lung nodules"; and the adrenal mass has grown from 8.2 cm to 9.1 cm in two months.
Tony and Mara were home when the news came in. Really, all I could do for a few minutes after I hung up was cry. I am not one who cries easily, except at tear-jerker movies, but there was no avoiding this. And this morning, our Golden Retriever, who loves to come up on the bed after Tony gets up, was on the bed when I woke up. He knows I don't like to pet him first thing, but he saw/felt my sadness this morning and slowly, very slowly, inched his way toward me till his paw was under my hand. There was nothing to do but pet him. I even let him lick my hand, also something I don't routinely do. Dogs really are wonderfully sensitive animals.
So clearly, the chemo is not working. I have an appointment with Sunkin Wednesday, so we will get what he thinks the next step(s) should be. Then, we can compare that with what the Sloan Kettering thoracic oncologist suggests.
We were all set with Sloan -- early 12/24 -- but at the end of the day yesterday, they called
to say the doctor cancelled all appointments that day & the first available appointment is 1/7. (Nothing went well yesterday.) But Sloan already had the new PET scan & saw the urgency so they hope to slide us in a cancellation appointment. I arranged this morning to have the biopsy slides & all the scans Fed Ex'd down to Sloan by Monday, so they have them ahead of when we come in. I believe Dr. Sunkin's office has also already sent the chart down. They have really bent over backwards to be helpful.
But I must say, I don't hold out much hope for Sloan to have a good treatment option. It's not like there are a lot of drug choices. We'll see.
Meanwhile, I am very happy to have some extra time off between chemos, to recover more fully. And perhaps there will be no more chemo.
Tony and I are beginning to figure out what we'd like to do, while I still feel up to it. One of our first thoughts is a long weekend in Montreal. We were there years ago, loved it, but somehow never made it back. We could even take the train, so bad weather wouldn't affect us (unless it is really bad. Then Amtrak doesn't run either.) And I am still hoping to get to warmth, sun & sand this winter.
Meantime, I went to my personal trainer today. First time since before the last chemo, and it felt great and I was able to hang in there for most of the hour. Lord knows I need it. I feel like I've already lost all muscle mass.
And sure enough, Dr. Sunkin's physician assistant called mid-afternoon. Her opener was, "This is not the news you want to hear." She was right in spades. She read me the pertinent info: the lung mass is the same size by measurement, although the report says it is larger (she's not sure why the discrepancy); there are "new little lung nodules"; and the adrenal mass has grown from 8.2 cm to 9.1 cm in two months.
Tony and Mara were home when the news came in. Really, all I could do for a few minutes after I hung up was cry. I am not one who cries easily, except at tear-jerker movies, but there was no avoiding this. And this morning, our Golden Retriever, who loves to come up on the bed after Tony gets up, was on the bed when I woke up. He knows I don't like to pet him first thing, but he saw/felt my sadness this morning and slowly, very slowly, inched his way toward me till his paw was under my hand. There was nothing to do but pet him. I even let him lick my hand, also something I don't routinely do. Dogs really are wonderfully sensitive animals.
So clearly, the chemo is not working. I have an appointment with Sunkin Wednesday, so we will get what he thinks the next step(s) should be. Then, we can compare that with what the Sloan Kettering thoracic oncologist suggests.
We were all set with Sloan -- early 12/24 -- but at the end of the day yesterday, they called
to say the doctor cancelled all appointments that day & the first available appointment is 1/7. (Nothing went well yesterday.) But Sloan already had the new PET scan & saw the urgency so they hope to slide us in a cancellation appointment. I arranged this morning to have the biopsy slides & all the scans Fed Ex'd down to Sloan by Monday, so they have them ahead of when we come in. I believe Dr. Sunkin's office has also already sent the chart down. They have really bent over backwards to be helpful.
But I must say, I don't hold out much hope for Sloan to have a good treatment option. It's not like there are a lot of drug choices. We'll see.
Meanwhile, I am very happy to have some extra time off between chemos, to recover more fully. And perhaps there will be no more chemo.
Tony and I are beginning to figure out what we'd like to do, while I still feel up to it. One of our first thoughts is a long weekend in Montreal. We were there years ago, loved it, but somehow never made it back. We could even take the train, so bad weather wouldn't affect us (unless it is really bad. Then Amtrak doesn't run either.) And I am still hoping to get to warmth, sun & sand this winter.
Meantime, I went to my personal trainer today. First time since before the last chemo, and it felt great and I was able to hang in there for most of the hour. Lord knows I need it. I feel like I've already lost all muscle mass.
Wednesday, December 9, 2009
Nightmare Resolved
I got the opinion of two other oncologists when I didn't hear back from Dr. Sunkin about delaying Chemo #4. Seems it is not a problem, that the 21-day chemo cycle has less to do with the effectiveness of the drugs at that interval than the fact the body needs three weeks to recover sufficiently to take another hit. Then, this morning, Sunkin called from San Antonio and also said right away it is no problem to delay treatment. They all said in the long run, the delay will not affect the outcome.
So at this point I'm thinking if there is a Chemo #4 in the offing, maybe it just gets postponed all the way till after New Year's weekend, so I can enjoy our family Xmas slated for that weekend.
In the meantime, I am still so tired two weeks after the last chemo that I relish the thought of having a longer recovery period. I am still spending more of the day on the bed than off.
After several more calls, it also looks like insurance after the first of the year will not be an issue, that all Tony's hard work researching options will cover Sloan or St. Peter's.
Now, we have to collect the massive amount of info Sloan K. wants for the visit: 7 actual biopsy slides as well as the report, all the PET, CT & MRI reports as well as a copy of the actual scans. Of course, most of Sunkin's chart on the treatments, medications, etc., etc. About the only thing they don't want is the early blood work. They only want recently labs.
So tomorrow we go off for the PET scan, leaving at 7:30 a.m. so I can sit in an over-heated lead-lined room for 100 minutes while the radioactive material they inject courses through my body (I don't feel it). The scan only takes about 20 minutes. Then, we'll try to start arranging to have the info sent to Sloan.
In the meantime, I hope to get the PET results on Friday & I will keep my 12/16 appt. with Dr. Sunkin to hear what he plans, once he sees the PET results. That way, when we go to Sloan to see thoracic oncologist Dr. Naiyer Rizvi, we can compare apples to apples.
Fingers crossed that the irritating little post-nasal drip cough I seem to have these days (nothing to do with the cancer) doesn't disrupt lying still for tomorrow's scan. Seems like it's always something
So at this point I'm thinking if there is a Chemo #4 in the offing, maybe it just gets postponed all the way till after New Year's weekend, so I can enjoy our family Xmas slated for that weekend.
In the meantime, I am still so tired two weeks after the last chemo that I relish the thought of having a longer recovery period. I am still spending more of the day on the bed than off.
After several more calls, it also looks like insurance after the first of the year will not be an issue, that all Tony's hard work researching options will cover Sloan or St. Peter's.
Now, we have to collect the massive amount of info Sloan K. wants for the visit: 7 actual biopsy slides as well as the report, all the PET, CT & MRI reports as well as a copy of the actual scans. Of course, most of Sunkin's chart on the treatments, medications, etc., etc. About the only thing they don't want is the early blood work. They only want recently labs.
So tomorrow we go off for the PET scan, leaving at 7:30 a.m. so I can sit in an over-heated lead-lined room for 100 minutes while the radioactive material they inject courses through my body (I don't feel it). The scan only takes about 20 minutes. Then, we'll try to start arranging to have the info sent to Sloan.
In the meantime, I hope to get the PET results on Friday & I will keep my 12/16 appt. with Dr. Sunkin to hear what he plans, once he sees the PET results. That way, when we go to Sloan to see thoracic oncologist Dr. Naiyer Rizvi, we can compare apples to apples.
Fingers crossed that the irritating little post-nasal drip cough I seem to have these days (nothing to do with the cancer) doesn't disrupt lying still for tomorrow's scan. Seems like it's always something
Tuesday, December 8, 2009
Nightmarish
Tony spent a good part of the morning on the phone with Sloan Kettering's very nice, very helpful physician's referral service. We have an appointment with one of their thoracic oncologists for 12/24 at 8:15 a.m. That's the easy part.
The rest is a nightmare. First of all, Sloan insists on seeing me after the PET scan (slated for this Thursday) but BEFORE any further treatment. Well, my next chemo is schedule for 12/16. I don't exactly like the idea of just blowing it off. So I have a call in to Dr. Sunkin in hopes of hearing from him today as he has a layover somewhere on his way to San Antonio for a week's conference. I want his opinion about postponing Chemo #4 by almost two weeks. We supposedly have only 24 hours to get back to Sloan to confirm the appointment, so the clock is ticking.
Then, there are insurance issues. We'll need our primary care doc to sweet-talk our current insurer into covering the Sloan visit. Hopefully, he'll be as successful as Sunkin just was getting the PET scan covered.
The biggest nightmare then has to do with future insurance coverage. Tony had worked it all out, we thought, to switch the first of the year, in part to ensure we could go to a place like Sloan if we wanted. But it turns out that what he had planned for new coverage does not work for Sloan, according to their billing dept. With only weeks left to go, he has to go back to the drawing board. Since this is not theoretical but real-life issues of coverage, the pressure is enormous to be sure we make the right decisions.
And then there's the whole question of what this possibly changed chemo schedule does to our family Christmas celebration, planned for New Year's weekend when, presumably, I would be recovered from the Dec. 16th chemo. Hamilton & Annette just booked their plane tickets for New Year's weekend. Guess we'll just have to leave plans as they are. I just hope I get to enjoy everyone.
Maybe if I felt tip-top, it wouldn't all seem so daunting to work out. We will obviously chip away at one issue at a time. For now, I am waiting for the phone to ring from Sunkin, or his office. Fingers crossed it rings. That's Step #1, to get his take on putting the chemo off.
The rest is a nightmare. First of all, Sloan insists on seeing me after the PET scan (slated for this Thursday) but BEFORE any further treatment. Well, my next chemo is schedule for 12/16. I don't exactly like the idea of just blowing it off. So I have a call in to Dr. Sunkin in hopes of hearing from him today as he has a layover somewhere on his way to San Antonio for a week's conference. I want his opinion about postponing Chemo #4 by almost two weeks. We supposedly have only 24 hours to get back to Sloan to confirm the appointment, so the clock is ticking.
Then, there are insurance issues. We'll need our primary care doc to sweet-talk our current insurer into covering the Sloan visit. Hopefully, he'll be as successful as Sunkin just was getting the PET scan covered.
The biggest nightmare then has to do with future insurance coverage. Tony had worked it all out, we thought, to switch the first of the year, in part to ensure we could go to a place like Sloan if we wanted. But it turns out that what he had planned for new coverage does not work for Sloan, according to their billing dept. With only weeks left to go, he has to go back to the drawing board. Since this is not theoretical but real-life issues of coverage, the pressure is enormous to be sure we make the right decisions.
And then there's the whole question of what this possibly changed chemo schedule does to our family Christmas celebration, planned for New Year's weekend when, presumably, I would be recovered from the Dec. 16th chemo. Hamilton & Annette just booked their plane tickets for New Year's weekend. Guess we'll just have to leave plans as they are. I just hope I get to enjoy everyone.
Maybe if I felt tip-top, it wouldn't all seem so daunting to work out. We will obviously chip away at one issue at a time. For now, I am waiting for the phone to ring from Sunkin, or his office. Fingers crossed it rings. That's Step #1, to get his take on putting the chemo off.
Friday, December 4, 2009
Lung Cancer Factoids
In searching for a thoracic oncologist, Tony came upon some interesting info on lung cancer:
• More people die of lung cancer worldwide than any other cancer
• Three times more men die of lung cancer than prostate cancer
• Two times as many women die of lung cancer than breast cancer (and yet I think about all the publicity breast cancer gets, compared to lung cancer)
• People with lung cancer who have never smoked are three times more likely to be female than male
• It is a modern epidemic among women in part because women get lung cancer after smoking fewer cigarettes for fewer years than men (I read somewhere that estrogen may be the culprit, but they don't really know yet)
The specialist said lung cancer now “ends the life of vital, active, healthy people.” Sound familiar?
• More people die of lung cancer worldwide than any other cancer
• Three times more men die of lung cancer than prostate cancer
• Two times as many women die of lung cancer than breast cancer (and yet I think about all the publicity breast cancer gets, compared to lung cancer)
• People with lung cancer who have never smoked are three times more likely to be female than male
• It is a modern epidemic among women in part because women get lung cancer after smoking fewer cigarettes for fewer years than men (I read somewhere that estrogen may be the culprit, but they don't really know yet)
The specialist said lung cancer now “ends the life of vital, active, healthy people.” Sound familiar?
Art, Not Science
We went for the usual Day 8 doctor visit Wednesday. The labs were all fine. The impressions we came away with were not. We discussed with Dr. Sunkin various next steps.
The first is a PET scan, if the insurance co. will approve it, or a CT scan next week to see what is happening with the tumors. Are they shrinking? Do they still show metabolic activity (only a PET shows that) or are they dead tissue now? Tony & I were quite shocked to infer that Sunkin is also looking at the scan to see if there are any new tumors. Somehow, we assumed that at least while I am getting chemo, no new tumors would appear.
We were also quite disappointed to learn the CEA tumor marker test that had dropped so dramatically during the first two chemos is really not very reliable. Sunkin compared it to the PSA test for prostate cancer. When Tony had prostate cancer several years ago, his PSA was not used to diagnose it. It always stayed low. Sunkin said some cancer patients have a CEA in the thousands, so my little 7.4 suddenly seems pretty meaningless. I am sure it is still a good sign that it has dropped during the chemo, but it seems it is not the strong predictor we thought it was.
He pointed to the fact that I don't have back pain as a good sign, but I reminded him that the pain stopped before chemo even started. No one has ever been able to explain why I had so much pain in Sept. and have virtually none now. It is still a mystery.
In discussing what the scan might show, Sunkin also never used the ‘r’ word – remission. He came close, describing shrinking tumors. But he never actually said remission.
We also briefly discussed Alimta as a maintenance drug after the chemo. When I expressed my disappointment that a study shows it extends life 4.3 months, that I was looking for years, not months, he didn’t really respond.
And how many more chemo treatments is still somewhat up in the air till the scan next week. Sunkin is talking about just one more – which makes it four treatments total. When I asked why we wouldn’t keep going till the CEA was zero and the tumors totally shrunk, he said there is a declining benefit in the chemo, that it starts to have too many side effects. Tony asked if we could return to the chemo at a later date if needed, and Sunkin said we could.
So we came away determined to go find a second opinion – after the scan and the fourth chemo. We are now in the midst of researching thoracic oncologists & programs – at Sloan Kettering and other major cancer centers in the Northeast. Sunkin said he was quite willing to send the chart & scans off for another set of eyes, but when I asked for guidance in choosing a doctor, he put us off till after the scan next week. Then, after a lengthy discussion about how we would come in to get the all-important scan results and discuss what next, he realized he will be away for a week at a conference. So his P.A. or nurse will call with the results, and we’ll move ahead on our own finding someone to see. We will see Sunkin just ahead of Chemo #4, so we can discuss his take on what’s next.
The first is a PET scan, if the insurance co. will approve it, or a CT scan next week to see what is happening with the tumors. Are they shrinking? Do they still show metabolic activity (only a PET shows that) or are they dead tissue now? Tony & I were quite shocked to infer that Sunkin is also looking at the scan to see if there are any new tumors. Somehow, we assumed that at least while I am getting chemo, no new tumors would appear.
We were also quite disappointed to learn the CEA tumor marker test that had dropped so dramatically during the first two chemos is really not very reliable. Sunkin compared it to the PSA test for prostate cancer. When Tony had prostate cancer several years ago, his PSA was not used to diagnose it. It always stayed low. Sunkin said some cancer patients have a CEA in the thousands, so my little 7.4 suddenly seems pretty meaningless. I am sure it is still a good sign that it has dropped during the chemo, but it seems it is not the strong predictor we thought it was.
He pointed to the fact that I don't have back pain as a good sign, but I reminded him that the pain stopped before chemo even started. No one has ever been able to explain why I had so much pain in Sept. and have virtually none now. It is still a mystery.
In discussing what the scan might show, Sunkin also never used the ‘r’ word – remission. He came close, describing shrinking tumors. But he never actually said remission.
We also briefly discussed Alimta as a maintenance drug after the chemo. When I expressed my disappointment that a study shows it extends life 4.3 months, that I was looking for years, not months, he didn’t really respond.
And how many more chemo treatments is still somewhat up in the air till the scan next week. Sunkin is talking about just one more – which makes it four treatments total. When I asked why we wouldn’t keep going till the CEA was zero and the tumors totally shrunk, he said there is a declining benefit in the chemo, that it starts to have too many side effects. Tony asked if we could return to the chemo at a later date if needed, and Sunkin said we could.
So we came away determined to go find a second opinion – after the scan and the fourth chemo. We are now in the midst of researching thoracic oncologists & programs – at Sloan Kettering and other major cancer centers in the Northeast. Sunkin said he was quite willing to send the chart & scans off for another set of eyes, but when I asked for guidance in choosing a doctor, he put us off till after the scan next week. Then, after a lengthy discussion about how we would come in to get the all-important scan results and discuss what next, he realized he will be away for a week at a conference. So his P.A. or nurse will call with the results, and we’ll move ahead on our own finding someone to see. We will see Sunkin just ahead of Chemo #4, so we can discuss his take on what’s next.
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