Last Friday, I had an appointment with a new oncologist at Group Health. On Thursday, after the disastrous news from the genetic mutation testing and the delay in informing me from GH, my daughter and my friend, Diane, convinced me that it would be in my best interest to see a doctor as soon as possible to get a new plan in place to treat the cancer. So when I called Group Health Thursday afternoon, the only doctor who was quickly available, was the new doctor from Tacoma, Dr. R, who had appointments in Seattle, on Friday. I made one for 11 am, so both Diane and my daughter could attend.
Dr. R was a warm, empathethic and competent oncologist. I was impressed with her overall knowledge and the level of care she provided in our initial visit. She was of the opinion that the next step for third line treatment would be chemotherapy with either taxotere as a the single agent or gemcitabene (gemzar). Taxotere has significant side effects, including major fatigue, and total hair loss, with a 35% chance of some success. Gemzar had fewer side effects and its success rate is 25%. Given my luck with the odds through this entire process, neither seems palatable to me.
At about 1pm, Friday, I received an email from Dr. C at Group Health informing me that Group Health would cover my care with Dr. M at Seattle Cancer Care. At least they would cover the cost of appointments with him. So, although I am initially very impressed with Dr. R at Group Health, I am going to take GH up on their offer and turn my treatment over to Dr. M.
Tonight, I also got a call from my dear friend, Mary Pat, the friend I went to Hawaii with. It turns out that she's the administrator for the medical school at the University of Colorado and friends with an internationally known oncologist, Dr. Ross Camidge. You would have thought this might have come up in our conversations over dinner or at the pool with our umbrella drinks in hand, but NOOOO. Dr. Camidge is one of the pre-eminent experts in the field of ALK rearrangement, and as a personal favor to Mary, he has agreed to review my medical records to see if he can come up with treatment recommendations that include other clinical trials that I might qualify for. As Joni Mitchell used to sing, "two heads are better than one." So, that helps me end today on a positive note.
It has been a tough week. Along with the disappointing test news, I am noticing that my cough is getting worse and so is my shortness of breath. I had to take an Ambien to get past the cough last night.
The prospect of a less than 50% chance of success with the 3d line chemo, which promises to take away most of my current quality of life was also causing me a great deal of heartache and I was far more weepy today, than I have been in a very long time.
I saw my family doctor today for my annual checkup and I mentioned to her my disappointment in the Group Health system and how she handled my cancer diagnosis last fall. I had intended to do this when I met with her, but it's hard for me to bring things like this up with the people who have disappointed me, and it left me feeling depressed rather than relieved. So Mary's call tonight helped bring me back out of the abyss. As did dinner at my friend, Anne's, and the cheese cake from Juniors in Brooklyn, that my friend Katy sent as a surprise. It arrived today and has been rather well sampled and appreciated.
And the other good news is that the Lung Association of Washington through their great attorney/fundraiser, Brent, gave me 4 tickets to the Mariners/Yankees game on July 8 with the promise that my guests and I can also go to batting practice. That, despite the M's terrible season thus far, is also something to look forward to.
Blessings on those who continue to follow me, and those who send me emails during the sometimes long stretches between posts. I appreciate them so much.
Showing posts with label Seattle Cancer Care Alliance. Show all posts
Showing posts with label Seattle Cancer Care Alliance. Show all posts
Wednesday, June 09, 2010
Friday, May 28, 2010
Status Update
As most of you know, on May 13, 2010, I had surgery to remove a malignant lymph node and send it in for testing to determine if I could be part of a clinical trial involving a new drug, crizotinib, which is targeted to adenocarcinomas (non small cell lung cancer tumors) which have something in their genetic makeup termed an ALK rearrangement. Now you will have to bear with me, because my understanding is fairly limited, but here goes my attempts to explain.
Current research into successful treatments for lung cancer indicates that non small cell lung cancer is not monolithic but rather an aggregation of many types of tumors, and testing for genetic mutation can provide information that can be used to tailor the treatment to the tumor. The first breakthrough occurred with testing tumors for EGFR (epidemral growth factor) expression mutation (or "EGFR") and those who tested positive for EGFR were greatly aided by two drugs, Iressa and more importantly Tarceva. However, these positive results were limited to individuals whose tumors tested positive for EGFR. Here's a good summary of the EGFR mutation from http://www.cancergrace.org/.
I was prescribed Tarceva in January 2010, after my first line treatment (chemotherapy) failed to keep the tumors from growing, without being tested for EGFR because 1) there was no tissue left from the two needle biopsies to test and 2) GH did not want to pay for the costs of the testing. Initially it seemed that it was an acceptable risk to take without the testing, because the first round of post-Tarceva ct scans in Feb. 2010, showed shrinkage in most of the tumors. However the April 28 ct scans showed that the tumors had regained their size and the mediastinal one had in fact doubled in size since the December ct scans. So it appeared that my tumors were not, in fact, positive for the EGFR expression mutation.
However, if my tumors could be formally shown to be negative for the EGFR expression mutation, they could then be tested for the ALK rearrangement (or "ALK"). If the tumors then tested positive for ALK, I could be enrolled in a clinical study of a new drug, critzotinib, which has shown great promise stalling or even reducing growth in tumors with the ALK rearrangment.
So, the lymph node came out on May 13, and I have been waiting for the test results. Last Saturday night, I sent an email to my oncologist at Group Health, asking when the EGFR results would be available. He wrote back to me on Tuesday, May 25:
I forwarded this email to Dr. M at the Seattle Cancer Care Alliance, almost as soon as I received it, and asked him if he could help clear up the dichotomy. 21 minutes later, Dr. M emailed me back:
At 4:28, I emailed Dr. M and asked if he had heard anything about the EGFR testing. He called me at 4:29 to tell me that the results of the EGFR testing were that the two major exons had tested negative for the EGFR expression mutation. Which meant that the tissue sample could now be tested for the ALK rearrangement. Dr. M said that will be done next week and the results should be available, again by the end of the week at the latest.
I am not there yet, and I may not qualify in the end. But I have learned (or relearned) a few things over the past two weeks.
Current research into successful treatments for lung cancer indicates that non small cell lung cancer is not monolithic but rather an aggregation of many types of tumors, and testing for genetic mutation can provide information that can be used to tailor the treatment to the tumor. The first breakthrough occurred with testing tumors for EGFR (epidemral growth factor) expression mutation (or "EGFR") and those who tested positive for EGFR were greatly aided by two drugs, Iressa and more importantly Tarceva. However, these positive results were limited to individuals whose tumors tested positive for EGFR. Here's a good summary of the EGFR mutation from http://www.cancergrace.org/.
I was prescribed Tarceva in January 2010, after my first line treatment (chemotherapy) failed to keep the tumors from growing, without being tested for EGFR because 1) there was no tissue left from the two needle biopsies to test and 2) GH did not want to pay for the costs of the testing. Initially it seemed that it was an acceptable risk to take without the testing, because the first round of post-Tarceva ct scans in Feb. 2010, showed shrinkage in most of the tumors. However the April 28 ct scans showed that the tumors had regained their size and the mediastinal one had in fact doubled in size since the December ct scans. So it appeared that my tumors were not, in fact, positive for the EGFR expression mutation.
However, if my tumors could be formally shown to be negative for the EGFR expression mutation, they could then be tested for the ALK rearrangement (or "ALK"). If the tumors then tested positive for ALK, I could be enrolled in a clinical study of a new drug, critzotinib, which has shown great promise stalling or even reducing growth in tumors with the ALK rearrangment.
So, the lymph node came out on May 13, and I have been waiting for the test results. Last Saturday night, I sent an email to my oncologist at Group Health, asking when the EGFR results would be available. He wrote back to me on Tuesday, May 25:
I have spoken to two people in lab at UW. One says they run the test every week. The other says they have your sample, hope to submit it by the end of the week, but could take 2-3 weeks for results. We'll keep tracking, but seems unlikely we'll have anything for at minimum another week.
I forwarded this email to Dr. M at the Seattle Cancer Care Alliance, almost as soon as I received it, and asked him if he could help clear up the dichotomy. 21 minutes later, Dr. M emailed me back:
I talked to them today.So today came. No word. I had a followup visit in surgery today. When I was first interviewed by the surgery nurse, she said that the results were back according to the screen she pulled up with my name. But she could not give them to me, although the Physician's Assistant, who I was seeing in lieu of the surgeon (because he was on vacation) could. So Diane, my friend who went with me, and I got quite excited. Unfortunately, when the PA showed up these were the results in the computer:
The first test should have results by the end of the week (so they tell me). After I spoke with them they will start simultaneously the ALK testing as well.
More by the end of the week
FINAL DIAGNOSIS
LEFT SUPRACLAVICULAR LYMPH NODE, BIOPSY; METASTATIC ADENOCARCINOMA, MODERATELY DIFFERENTIATED.
COMMENT: A block is sent to the University of Washington for EGFR testing
SOURCE:This initial GH read on the node was done May 14, but not released to MyChart where I could have viewed it. And the PA confirmed that there were no further testing results at Group Health.
A) L. supraclavicular lymph node (sent fresh)
GROSS APPEARANCE:
Received in a container labeled with the patient's name and "left supraclavicular lymph node biopsy-in saline" is a 1.6 x 1/3 x 1/0 cm encapsulated tan pink lymph node candidate, with attached fat. The lymph node is serially sectioned to demonstrate pink slightly firm and fibrous parenchyma, and is entirely submitted in 1-2.
Testing for EGFR is requested per Dr. W. Per Dr. R, the specimen is formalin fixed and embedded for EGFR testing from the paraffin block.
MICROSCOPIC EXAMINATION:
The lymph node is almost entirely replaced by moderately differentiated adenocarcinoma. There is an associated desmoplastic stromal reaction. Tumor cells show clear cell change as well as cystic areas of necrosis. Tumor extends to the edge of the tissue.
At 4:28, I emailed Dr. M and asked if he had heard anything about the EGFR testing. He called me at 4:29 to tell me that the results of the EGFR testing were that the two major exons had tested negative for the EGFR expression mutation. Which meant that the tissue sample could now be tested for the ALK rearrangement. Dr. M said that will be done next week and the results should be available, again by the end of the week at the latest.
I am not there yet, and I may not qualify in the end. But I have learned (or relearned) a few things over the past two weeks.
Wednesday, May 05, 2010
Second Opinion at Seattle Cancer Care Alliance Friday
I notified Group Health last Friday that I would be seeking a second opinion. And without waiting for their ok, I called Seattle Cancer Care Alliance and set up the appointment with Dr. M.
Hell, if I can spare $1000 for Scooter's surgery, I can do the same for me. But it seems, at least from an email received on Monday from GH, that GH will pay for this time. Like Aladdin, I have three 'free' second opinions as a part of my GH insurance. This will be my second, second opinion. Can't get a referral for ongoing treatment from a lung cancer specialist when there is no lung cancer specialist on staff, but I can get a second opinion.
So I hope that this appointment leads to a more aggressive approach, and some thinking outside the box. My daughter is taking her pediatrics exam early tomorrow in Pocatello, ID, and then driving for 12 hours back to Seattle, so she can attend with Diane and me. Fingers crossed she will make it safely.
Friday, October 16, 2009
Second Movement
Yesterday I had an appointment with an oncologist who specializes in lung cancer at the Seattle Cancer Care Alliance ("SCCA")for a second opinion. One of the nicer aspects of Group Health membership is that they authorize and pay for a second opinion, and I took advantage of that.
I met with Dr. M and his oncology resident, Dr. O at SCCA. Before arrival, Group Health had sent over all the tests and results, and I had filled out a lengthy form, which SCCA had sent. I turned it over at the check in desk and was given a green sticker that proclaimed I had passed their "do you have a cold" test--everyone, including visitors--had to fill out a questionnaire concerning current symptoms before being allowed to stay at SCCA. Can not be too cautious when you have folks going through chemo all around.
The view from the waiting room, overlooking Lake Union, was tremendous, and probably very calming for many. Me? Not so much.
After a 15 minute wait, we were shown into a standard examination room, and first met with Dr. O, who asked additional questions and did a short physical exam. Dr. O asked if I had considered genetic testing given the history of cancer in my family and said that it might not be of assistance to me, but it would help my children. Dr. O then took her oral history notes along with all my test results/readings and questionnaire answers to Dr. M for consultation prior to his meeting with us.
Dr. M is tall, charming, and very direct. First, he asked me what I understood about my current condition. I gave him my two minute precis: lung cancer diagnosed 9/18/09, stage 3-B, course of treatment prescribed, etc. I then asked what he thought.
Dr. M responded that (and this is in no particular order from our conversation) he wanted to take my case, which he found interesting, to the SCCA Tumor Board and solicit their opinions on the best course of treatment.
The Tumor Board meets Tuesday next week (I've been saying Wednesday to friends, but a quick check of my notes shows that is in error). This includes oncologists and radiologists and Dr. M wants input from the radiologists whether to do radiology concurrent with or consecutive to the chemotherapy. Dr. M agreed with Dr. N that surgery was not an option to the lymph node involvement, and the desire to recover my voice which would mean treating the nerve to my vocal cord with kid gloves.
Dr. M also wants a second biopsy done to see if the tumor has EGF receptors:
http://en.wikipedia.org/wiki/Epidermal_growth_factor_receptor
If so, this would give them a reasonable chance of finding the original source of the cancer and it could also change the treatment modality, perhaps significantly. They could shift to a pill(erlotinib*, not gefitinib which is not approved for use in the USA) and not employ chemo. Dr. M suggested a second punch needle biopsy of one of the lower left lobe tumors using a larger needle to obtain sufficient tissue to do the biopsy. It could take ten days to receive the biopsy results. Dr. M also proposed a different chemotherapy combination, using a drug named pemetrexed instead of the paclitaxel, and perhaps keeping the carboplatin, or using cisplatin in its place. The pemetrexed would lower the possibility of hair loss but would increase nausea, and there would still be potential problems with neuropathy if cisplatin is used in lieu of carboplatin.
Dr. M was presently of the opinion that chemo followed by radiation was the correct course, unless the Tumor Board determines otherwise.
Dr. M thinks that a month ago the cancer was 3-A, but that taking additional time to try to figure all this out would not be too slow for starting treatment. At some point, I said that this shows why medicine is an 'art' not a 'science' and he gave me the look he said his 12year old daughter gives him when she thinks he's been goofy. Still, I think that at the outer limits, medical diagnosis is an art, perhaps informed by science, but still an art nonetheless.
Dr. M talked about using the term 'control' rather than 'palliative' if it was found that we could not eradicate the cancer. He said that if I had been diagnosed with AIDs in 1985, I would have been dead within 6 months, but now those with AIDs have a likely chance to live our their normal lifespans. My prognosis gives me 2-2 1/2 years on the pill, before recurrence of the cancer. Using chemo together with radiation, the intent would be curative.
So he recommended that I get the port installed in my chest Tuesday morning, and await the determination of the Tumor Board deliberations before starting chemo--likely Thursday. That left the biopsy question unanswered.
I asked him to call Dr. N before I had my telephone consult with himf at 4:40 that day, and he agreed to do so. I said it was my hope that he and Dr. N could work collaboratively on my case and asked him what happens when doctors disagree. He laughed and said it was not at all common to disgree, that he fully expected that they would be on the same page. When I returned home, I emailed Dr. N and mentioned that Dr. M was going to call him. He later responded via email that he had talked with Dr. M at noon and was looking forward to our phone conversation.
So 4:40 came and went. So did 5:00; 5:15, 5:30; 5:40. During this time I emailed Dr. N, I called his office several times and was referred to the oncology voice mail that stated the office was closed for the day. Now I operate on the belief that my word is my bond, and if I cannot reach a client or fellow attorney at the time agreed upon, I have my legal assistant contact them to let them know that things are running late. This did not happen. In fact when I called Group Health's front desk, after being sent to the closed oncology office, I hung up and called Group Health back, and the woman (once again she complained about not being able to hear me) said sharply, "This is the number I have to refer you to. I can't do anything else." This all too common lack of care with the Group Health administrative staff reduced me to tears. But luckily, I called the main number once more and this time spoke to a different, more empathetic main operator who must've heard my distress and agreed to page Dr. N, so he would be aware that I was waiting. She put me on hold for a while, then got back to me and said he was running behind on my calls and would be calling shortly.
At 5:50 Dr. N finally called. I had managed to put myself back together again, but I was not on top of my game for this discussion. Dr. N said that he had spoken to Dr. M and he was in agreement with his recommendations concerning the Tumor Board and the shift in chemo meds. But he wanted to talk with Dr. L, a thoracic surgeon at Virginia Mason, he had earlier mentioned, to see if he could do a mediastinal biopsy of the tumor growing on the nodes next to the nerve for my larnyx. He was hoping that it could be done before Thursday, but because he was leaving shortly for a weekend in Colorado delivering a paper at a conference, he was not sure if it could get pushed on through fast enough. Although, Dr. N thought a week's delay would not be problemmatic. Dr. N said that if the thoracic surgeon agreed to do this, VM would probably run my case through their Tumor Board as well.
You know at this point, I just want to say that women of my mother's age aspired to be pin ups, and women from my generation wanted to be centerfolds in Playboy. Well my goal in life is that I want to have my PET and CT scans reviewed by Tumor Boards. Don't tell Sarah Palin.
The plan, which is still not fixed is that the port will be installed on the right side of my chest on Tuesday and chemo will begin Thursday. Once Dr. N returns from Colorado I hope to take up the issue of the biopsy and settle that fully as well. But as Dr. M said during our second opinion consult, you don't want to use a tank to kill this if all you need is a rifle. I can get behind that opinion. And I can be patient a while longer if this means the treatment is more tailored to my situation and it gives me just as good a chance for remission/cure, as well as fewer side effects during treatment.
And I got an email from Dr. N apologizing for his late call.
*erlotinib is a drug marketed by Genentech--which merits a shout out to Fred, a college classmate, who is a research scientist for Genentech!! Howdy there and tell them to keep up all the good work!
I met with Dr. M and his oncology resident, Dr. O at SCCA. Before arrival, Group Health had sent over all the tests and results, and I had filled out a lengthy form, which SCCA had sent. I turned it over at the check in desk and was given a green sticker that proclaimed I had passed their "do you have a cold" test--everyone, including visitors--had to fill out a questionnaire concerning current symptoms before being allowed to stay at SCCA. Can not be too cautious when you have folks going through chemo all around.
The view from the waiting room, overlooking Lake Union, was tremendous, and probably very calming for many. Me? Not so much.
After a 15 minute wait, we were shown into a standard examination room, and first met with Dr. O, who asked additional questions and did a short physical exam. Dr. O asked if I had considered genetic testing given the history of cancer in my family and said that it might not be of assistance to me, but it would help my children. Dr. O then took her oral history notes along with all my test results/readings and questionnaire answers to Dr. M for consultation prior to his meeting with us.
Dr. M is tall, charming, and very direct. First, he asked me what I understood about my current condition. I gave him my two minute precis: lung cancer diagnosed 9/18/09, stage 3-B, course of treatment prescribed, etc. I then asked what he thought.
Dr. M responded that (and this is in no particular order from our conversation) he wanted to take my case, which he found interesting, to the SCCA Tumor Board and solicit their opinions on the best course of treatment.
The Tumor Board meets Tuesday next week (I've been saying Wednesday to friends, but a quick check of my notes shows that is in error). This includes oncologists and radiologists and Dr. M wants input from the radiologists whether to do radiology concurrent with or consecutive to the chemotherapy. Dr. M agreed with Dr. N that surgery was not an option to the lymph node involvement, and the desire to recover my voice which would mean treating the nerve to my vocal cord with kid gloves.
Dr. M also wants a second biopsy done to see if the tumor has EGF receptors:
http://en.wikipedia.org/wiki/Epidermal_growth_factor_receptor
If so, this would give them a reasonable chance of finding the original source of the cancer and it could also change the treatment modality, perhaps significantly. They could shift to a pill(erlotinib*, not gefitinib which is not approved for use in the USA) and not employ chemo. Dr. M suggested a second punch needle biopsy of one of the lower left lobe tumors using a larger needle to obtain sufficient tissue to do the biopsy. It could take ten days to receive the biopsy results. Dr. M also proposed a different chemotherapy combination, using a drug named pemetrexed instead of the paclitaxel, and perhaps keeping the carboplatin, or using cisplatin in its place. The pemetrexed would lower the possibility of hair loss but would increase nausea, and there would still be potential problems with neuropathy if cisplatin is used in lieu of carboplatin.
Dr. M was presently of the opinion that chemo followed by radiation was the correct course, unless the Tumor Board determines otherwise.
Dr. M thinks that a month ago the cancer was 3-A, but that taking additional time to try to figure all this out would not be too slow for starting treatment. At some point, I said that this shows why medicine is an 'art' not a 'science' and he gave me the look he said his 12year old daughter gives him when she thinks he's been goofy. Still, I think that at the outer limits, medical diagnosis is an art, perhaps informed by science, but still an art nonetheless.
Dr. M talked about using the term 'control' rather than 'palliative' if it was found that we could not eradicate the cancer. He said that if I had been diagnosed with AIDs in 1985, I would have been dead within 6 months, but now those with AIDs have a likely chance to live our their normal lifespans. My prognosis gives me 2-2 1/2 years on the pill, before recurrence of the cancer. Using chemo together with radiation, the intent would be curative.
So he recommended that I get the port installed in my chest Tuesday morning, and await the determination of the Tumor Board deliberations before starting chemo--likely Thursday. That left the biopsy question unanswered.
I asked him to call Dr. N before I had my telephone consult with himf at 4:40 that day, and he agreed to do so. I said it was my hope that he and Dr. N could work collaboratively on my case and asked him what happens when doctors disagree. He laughed and said it was not at all common to disgree, that he fully expected that they would be on the same page. When I returned home, I emailed Dr. N and mentioned that Dr. M was going to call him. He later responded via email that he had talked with Dr. M at noon and was looking forward to our phone conversation.
So 4:40 came and went. So did 5:00; 5:15, 5:30; 5:40. During this time I emailed Dr. N, I called his office several times and was referred to the oncology voice mail that stated the office was closed for the day. Now I operate on the belief that my word is my bond, and if I cannot reach a client or fellow attorney at the time agreed upon, I have my legal assistant contact them to let them know that things are running late. This did not happen. In fact when I called Group Health's front desk, after being sent to the closed oncology office, I hung up and called Group Health back, and the woman (once again she complained about not being able to hear me) said sharply, "This is the number I have to refer you to. I can't do anything else." This all too common lack of care with the Group Health administrative staff reduced me to tears. But luckily, I called the main number once more and this time spoke to a different, more empathetic main operator who must've heard my distress and agreed to page Dr. N, so he would be aware that I was waiting. She put me on hold for a while, then got back to me and said he was running behind on my calls and would be calling shortly.
At 5:50 Dr. N finally called. I had managed to put myself back together again, but I was not on top of my game for this discussion. Dr. N said that he had spoken to Dr. M and he was in agreement with his recommendations concerning the Tumor Board and the shift in chemo meds. But he wanted to talk with Dr. L, a thoracic surgeon at Virginia Mason, he had earlier mentioned, to see if he could do a mediastinal biopsy of the tumor growing on the nodes next to the nerve for my larnyx. He was hoping that it could be done before Thursday, but because he was leaving shortly for a weekend in Colorado delivering a paper at a conference, he was not sure if it could get pushed on through fast enough. Although, Dr. N thought a week's delay would not be problemmatic. Dr. N said that if the thoracic surgeon agreed to do this, VM would probably run my case through their Tumor Board as well.
You know at this point, I just want to say that women of my mother's age aspired to be pin ups, and women from my generation wanted to be centerfolds in Playboy. Well my goal in life is that I want to have my PET and CT scans reviewed by Tumor Boards. Don't tell Sarah Palin.
The plan, which is still not fixed is that the port will be installed on the right side of my chest on Tuesday and chemo will begin Thursday. Once Dr. N returns from Colorado I hope to take up the issue of the biopsy and settle that fully as well. But as Dr. M said during our second opinion consult, you don't want to use a tank to kill this if all you need is a rifle. I can get behind that opinion. And I can be patient a while longer if this means the treatment is more tailored to my situation and it gives me just as good a chance for remission/cure, as well as fewer side effects during treatment.
And I got an email from Dr. N apologizing for his late call.
*erlotinib is a drug marketed by Genentech--which merits a shout out to Fred, a college classmate, who is a research scientist for Genentech!! Howdy there and tell them to keep up all the good work!
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