Friday, June 20, 2008
Friday, June 13, 2008
Chemo cycle #5 went without a hitch on Tuesday. We're trying a new symptom control regimen that includes steroids for three days after chemo, Ibuprofen during the day and oxycodone at night. So far, it seems to be a winner. I'm a little achy today, but nothing that will interfere with life in any significant way. The Neulasta last cycle kept my white count normal and didn't increase side effects significantly so we'll do that with every cycle from here on out. Honestly, there's not a whole lot of cancer news - next scan is after cycle #6 which comes on July 1st.
Last week was a whole lot of fun and games. Emma came to town for the great 21st birthday extravaganza. Lindsay came up to share in the festivities. My brother and sister-in-law showed up on Wednesday and did he ever have a surprise for me!:
We had a great visit and look forward to seeing them again in New Mexico next month.
Another school year is winding down and that means end of year concerts and recitals for Hannah and Philip. Finals are next week and then Philip heads out to music camp for a week. Hannah says she will be job hunting this week.
My mother and stepfather will he here next week for my great 50th (!) birthday extravaganza, but otherwise I'm planning to keep things low key this cycle and see if I can avoid the entire chest pain/fever drama that was no fun last cycle. I have no idea how many cycles of this Carbo/Taxol/Avastin I will eventually wind up completing, but I figure I'm at least halfway and it hasn't killed me yet!
Delightful weekend wishes to you all.
Monday, June 9, 2008
FUN WITH CANCER just keeps rolling right along. I had another dreadful
O'Hare experience Friday evening that involved gate changes, delays,
lies, lies and more lies about a fictional Cinnabon that resulted in
miles of walking. Bastards! By the time I was half way through that
process I had a moderately severe sore throat but made it home and into
my bed unscathed. I worked Saturday and that was OK. Then the hammer
fell. I woke up Sunday with right sided chest pain whenever I took a
deep breath and a dry cough. I took my beloved Ibuprofen on my way to
work - which made my shoulder feel better but didn't do much for the
chest pain. No fever but my pulse was 120. So I promised myself that if
it didn't get better by noon I'd go to the ER. Which I did. By the time
I got to the ER my pulse was down to 95 and I was cursing myself for not
waiting a little longer. They did counts (fine), a chest x-ray looking
for pneumonia (fine) and a CT angiogram looking for a PE (fine). Because
I didn't have and hadn't had any fever they didn't draw blood cultures
and let me go home - by which time my pulse was 82 and I had almost no
So then, brilliant a person as I am, I went home and launched into the
A/C zone control system that has been making our first floor a meat
freezer and our second floor a sauna. That was an hour and a half of
screw drivers, flashlights, breakers, up and down 2 flights of stairs to
push thermostat buttons, etc. Then dinner. Then Philip's birthday cake,
the decorating of which was an unmitigated disaster with purple
buttercream frosting slowly slipping down the side of the cake. This I
finished at about 9:45 and was miserable - exhausted, chest pain and
short of breath. I cleaned up, went upstairs, changed into PJs and
checked my temperature. Voila! 101.1. So I had to call the on call
doctor. We hashed around alternatives and decided to start the
antibiotic my oncologist has me keep on hand for just such circumstances
and now I'm at work, no fever, feeling better than last night but now I
have a headache, and waiting for the oncologist to call.
Tomorrow I'm supposed to drive to Philadelphia with Emma to look at the
UPenn Vet School, something which I am looking forward to with much
happy anticipation and feel like I'm probably going to have to fight
with the oncologist about.
Silver lining - CT angiogram was on the same machine and read by same
radiologist as my follow up scan on 5/13.
5/13 - largest liver lesion 4.5 X 4.0 cm
6/1 - largest liver lesion 3.8 X 2.7 cm
Wednesday, June 4, 2008
Basically, the MSK guy said that for people responding to the Carbo/Taxol/Avastin (meaning tumor shrinkage, not just stable disease) his policy is to treat to tolerance. AOF concurs with this. But here's the reason I love AOF so very much. I asked him what the most number of treatments of Carbo/Taxol/Avastin he's ever administered and he said 10. Which made me whimper. And then he said, "But I never tell my patients I'm treating to tolerance. I tell them let's do 2 more and see where things stand." He said I have to live in the 2 cycle place in my head and then he asked me what problems I'm having with the chemotherapy. I said that it's those 3 or 4 days of pain after the chemotherapy that just really do me in. He responded that it should be better treated because the tolerance reasons to stop the chemotherapy are neuropathy, fatigue (as in can't get out of bed for more than a couple of hours a day) and weight loss. Everything else that I don't like should be treated as a nuisance side effect. He told me to take narcotics every night while the pain is bad and pump up my bowel regimen. He said what everyone else says about the neuropathy - that I'm not likely to get any of that back so not to let it go too far. I've started with a little numbness in my toes over the last couple of days and intermittent fingertip tingling. I don't want to let it get to the point of interfering with examining patients, writing, typing or playing the piano. As for the feet, I need not to let it get to the point of stumbling. The fatigue and weight loss are not issues for me so the neuropathy is likely to be the thing that determines just how many cycles I get as long as I keep responding.
Once we're done with this chemotherapy the MSK guy says that their policy is to start the Tarceva right away, not wait for disease progression and my oncologist agrees with that. That was new to AOF but he sees why they do it and would go ahead with it.
And then we got to the crying. Because, while the Tarceva doesn't sledgehammer the entire person like the Carbo/Taxol does, it has its own little issues (rash and diarrhea) and I would still be on the Avastin (bloody noses, bleeding hemorrhoids and a chronically nonhealing port wound). So, basically, I don't get my old self back. Ever. While treatments are working I have a chronic disease and get to live with the side effects of the medications. Once treatments stop working I get the effects of the illness and, pretty quickly, I lose the whole shooting match.
AOF told me to stop being a doctor and start being a patient. He said to try to live my life in 6-8 week increments (6 while I'm the C/T/A and getting scans after every other cycle and 8 once I'm on Tarceva and getting scans every two months). He reminded me to optimize the right now because it's all any of us really has. And he tipped his hat to me for keeping at the fight.
So today the pain is almost completely gone. Tomorrow I get to go see friends in Illinois. Saturday Emma comes home for a week. The sun is shining and life is good.
Oh, and I have been receiving reduced doses of Taxol because of my liver wonkiness and today I got the full dose! Take that, adenocarcinoma!
Yay! Response! Plan!
I think we will wind up proceeding with the chemo next week because the improvement in the liver function tests is supportive evidence for decrease in the size of the liver lesion. Then I'll take my whole pile of scans, lab reports and chemo summary to Sloan Kettering a week later on the 27th to find out what courses of action are available at this point. At the very least, the chemo has given us some breathing room to evaluate treatment options by knocking the liver function tests down to the point where I am once again eligible for clinical trials.
So I'm a little deflated because it certainly doesn't look like a great big old complete response is in the cards for me. But I still feel pretty normal except without hair and can pursue all the life activities that ever interested me so maintaining that for as long as possible seems to be the goal to shoot for at this point.
There's lots of that life stuff on the near horizon for me, too. Friends will be visiting from Oregon this weekend. Next Friday I travel to Podunk, PA to see Lindsay's last show and BRING HER HOME. She and Jacob will spend Memorial Day weekend in CT with us. May 29th I travel to Chicago for a meeting and hooking up with my Chicago homies. May 31st Emma gets here for a week and my brother and sister-in-law pop in to help celebrate her 21st birthday. Mid June sees my mom and stepfather in town for a visit. NM beckons the second week of July. Man, I'm exhausted just typing it! But much fun will be had all along the way.
Thanks, as always, for all the love, support, thoughts and prayers. I'm putting them all to very good use.
For you Loyola folks, I will be in Chicago Friday, May 30th for the annual meeting of the National Lung Cancer Partnership. The meeting ends downtown at 12:30 and I have a 7:30 pm flight out of O'Hare so I'm planning just to head out to Loyola for lunch and visiting.
Dr. Frye, I know that Dr. Albain is VP of the Board of the NLCP. I have given the NLCP and my current hospital permission to use my Rachel Ray appearance for any PR stuff, lung cancer awareness, etc. that they'd like. If Loyola wants to do anything along those lines about a former member of the family, I would be fine with that. I don't have an air date for the show yet but hopefully will by the end of next week.
Everyone have a delightful weekend, because I sure am going to!
The rollercoaster that is my life keeps right on rolling. Thursday we left for Texas. I had my stupid AC joint injected on 4/9 because it hurt like a mofo and orthopod said he'd give me as many steroid injections as I want because the cartilage is toast already. I had about a 75% improvement until I carried my suitcase on the right side Thursday morning and OMG! I thought I was going to die right through Sunday afternoon. Friday and Saturday I was taking maximum doses of Ibuprofen, which I'm not supposed to do because it can make my GI tract bleed (which is a very bad thing due to the Avastin part of my chemotherapy) and because it could mask a fever. I cut down to 600 mg three times a day on Sunday, took my last dose at 10 pm Monday night and woke up at 3 am Tuesday with a fever. It broke by early morning and I woke up fine with very little pain in the shoulder and no fever. I didn't take any Ibuprofen. When I got home after taking the kids to school I felt exhausted with a mild headache. I slept until I got up and ate on my way to chemo.
When I got to the oncologist's office (where the Rachel Ray film crew was waiting, BTW), my temperature was 100.3. I went round and round with the oncologist. He wanted to hold off a day or two on the chemo and wait for blood culture results. I argued that my white count was great and I wasn't really immunocompromised right at that minute (Tuesday) so if they started empiric antibiotics that day I should be able to fight off anything that's percolating before the neutropenia hits next week. He reminded me that I would be getting a big dose of steroids with the chemo which will screw up my immune system. In the end he agreed to go ahead with the chemo on Tuesday, start the antibiotics and see me today and maybe give me some Neupogen early. I felt much better by about halfway through chemo and my temp was normal by the time I was done - but that may have been the Decadron.
My fever has stayed gone since Tuesday afternoon and I woke up Wednesday with a rip roaring cold, so I think a respiratory virus accounts for the fever and I'm glad we went ahead with the chemo on Tuesday. Today is day #1 of my usual three days of yuck after chemo. Everything hurts, including sharp, shooting head pains. I'm queasy and still snotty from my cold. But, hey! I'm alive.
For those following the liver function test saga - AST is 43, ALT is 71, Alk Phos is mid 200's. Still getting better but I'm getting annoyed that they're not just normal already.
Follow up scan is scheduled for Tuesday, 5/13. Sloan Kettering visit is 5/27 (after chemo #4 on 5/20/08). More important than that, The Rachel Ray Show is sending a car to pick me up next Tuesday and take me into NYC for the in studio taping. I should have an air date a few days after the taping and I PROMISE I'LL TELL EVERYONE AS SOON AS I KNOW!
Today I'll try to distract myself from the yucks with the following: doctor's visit, lots of laundry, passport picture and mail in renewal application, pick up all scans and slides for various doctor's things upcoming. I work the weekend so I have today off. It's beautiful in Connecticut but NOT WARM so please send warm thoughts our way and, as always, keep your cancer killing thoughts and prayers coming.
First, I'm feeling great. It certainly helps that I didn't screw up and take steroids instead of acid reducers like I did at this point in the last chemo cycle. So right at this moment, except for the fact that I have no hair to speak of, I feel exactly like I did two weeks before this monster was diagnosed - no pain, no nausea, great energy level and all smiles.
Yesterday my Medaris cousins drove up to have lunch and shoot the breeze with me. I'm not sure it's really safe to have that much kick ass and takes names later mojo in one room for very long, but it was a delight to see them and catch up on kids and parents and life in general.
But the real purpose of this email is to ask a small favor of all of you and your friends.
The National Lung Cancer Partnership has put an online petition up to encourage increased federal funding for lung cancer research. I ask you to take a look, and, if you will, to sign it.
A social stigma is attached to lung cancer that seriously impedes funding and advocacy, although many patients -- like me -- are lifelong nonsmokers, and even those patients who have smoked do not "deserve" to be punished with this terrible disease. Today, lung cancer research is only funded at the federal level by the National Cancer Institute (NCI). This is in contrast to many other common cancers which receive funding from several different federal funding agencies. Lung cancer receives considerably less research funding (about $280MM) from NCI than either breast ($570MM) or prostate ($310MM) cancer. If you translate that into research dollars per death from cancer, NCI estimates that in 2005 it spent $1,708 per life lost to lung cancer; $13,947 per death to breast cancer; and $10,214 per prostate cancer death.
The petition can be found at:
The first ever United for Lung Health Federal Advocacy Day will be held on May 13-14 in Washington, D.C. and I'm sure a bump in petition signatures will be something good for the advocates to have in their pockets. I won't be able to make it this year, but hope to be there with bells on my toes and fire in my belly next year.
Well, I suppose I've procrastinated long enough. Time to scale the mountain of laundry that's glaring at me.
Today was the background taping for the Rachel Ray Show. I had my blood drawn first thing this morning and then Hannah and I drove into NY, where we spent about 4 hours being bored to death. The producer interviewed me, then I talked to the designer . Then everyone else packed up and headed to the workshop and Hannah, Lindsay's husband and I headed back to CT.
All the cancer news is still good. My white count is low normal today so no Neupogen. AST, ALT and alk phos are all better than a week ago (AST is almost normal!). OK, for you number followers - WBC 3.4, K 5.4, AST 41, ALT 87, Alk phos 294, BUN 32. One of my kidney tests is a little high, as is my potassium, so I'm supposed to be pushing fluids. I feel fine and hopefully will stay that way until the next round of chemo on the 29th.
Keep the good thoughts and prayers coming. They seem to be doing the trick.
Mostly I hope for good luck to go with my good underlying health, good socioeconomic status and world class medical advice. I hope this is a really responsive tumor and my anguished decisions are all about keeping it gone. I really wish I had a crystal ball because all of this uncertainty sucks.
I'm likely not to sleep too much tonight thanks to the Decadron so I'll spend my awake time on cancer destruction imaging. I really appreciate more than I can ever say the cards and emails you are all sending. It keeps my chin up and the smiles coming. And, as always, thank you for every prayer and good thought you can spare.
Joyous weekends all around on me!
So I did all that and...
Counts are normal.
Liver function tests are even better than they were last Tuesday!!!!!!!
AST 55 (3/5 46, 3/17 133, 3/25 101)
ALT 140 (3/5 58, 3/17 273, 3/25 282)
alk phos is higher but it's very nonspecific.
bili still normal
LDH normal (never checked before and I was way worried about it)
When I talked to my oncologist friend in NM about this protocol just after my oncologist recommended it he was really up on it. He said that he's had a number of patients achieve complete and sustained remissions. So I asked him how long it takes to know if someone is going to respond that way and he said that those who go into remission do it fast - they can tell with the first or second cycle.
My oncologist is a little more conservative in talking to me about what to expect - he won't refer to remission with this tumor, only disease control, and he won't check for tumor response until after the 4th cycle. My oncology nurse friend in Portland also has someone close to my age, build and performance status who shows no evidence of disease with the same cancer 9 months after treatment with this regimen.
So there's a big part of me doing a great big Snoopy dance right now, coming out from under the pall that this diagnosis threw over me. During my residency this diagnosis was a death sentence and it's just going to take me a while to adjust to thinking of this as a chronic disease that I can manage (with a little help from the oncologist).
Keep the good thoughts, prayers, etc. coming!
So my hair started coming out in handfuls yesterday and I decided I didn't want another shampooing experience like this morning's so I visited my friendly stylist today and we took step one. I call this Jamie Lee Curtis on the way to Demi Moore:
I'm still having aches and pains and low grade temperature elevations - all pretty well controlled with Ibuprofen (and Cipro after the Decadron debacle). Still doing OK with work and running kids around.
Through weird and wonderful and crazy turns of events it looks like I'm going to be on The Rachel Ray Show for something tangentially related to the cancer. I'm hoping to get 5 seconds to speak my piece about lung cancer and point viewers to The National Lung Cancer Partnership for information and donations for original research. More about that as it becomes available.
I'm in good spirits - visualizing cancer cells floating on splintered pieces of wood crying for help as the sharks circle. Keep all the good thoughts and prayers coming.
Dear Family, Friends, and not elsewhere classified (NEC) Loved Ones,
My Dad and Katie sent me a book called Crazy, Sexy Cancer Tips and one of the tips was an email list to keep loved ones up on what's going on without having to call or write a hundred people every time. So this is the inaugural message to my mail list! Anyone who would like to be removed from the list, please let me know. Thanks for the book, Dad and Katie!
So since this is the first, I'm going to put the whole diagnosis story in and let everyone know where things stand right now. On February 29th I went to see my internist because I had had six whole days of mid/upper back pain which just didn't seem like the mechanical back pain I see and treat all day every day. She agreed, checked a urinalysis and ordered a CT because she thought it might be an atypical kidney stone or gallbladder disease. The CT was on Tuesday, March 4th, and I will always feel sorry for her having to make that phone call. You can sugar coat things like "T10 lesion, right adrenal lesion and three lesions in the liver" to a lot of patients, but she knew I would know what was up. She had already scheduled MRIs of the Tspine and abdomen/pelvis and spoken with an oncologist when she called me Tuesday afternoon. I had the Tspine MRI on Wednesday and had blood drawn for chemistries. I had had a completely normal annual physical with chemistries in November. Now my AST was 46 and my ALT was 58 (both slightly elevated - less than twice normal). Everything else was OK. The Tspine MRI showed a cystic lesion in my right upper lung so they added a chest CT to the abdomen/pelvis MRI on Thursday. I saw the oncologist Thursday afternoon. We sent discs of all the scans to the interventional radiology department at St. Raphael's Hospital and on Friday I had a CT directed biopsy of the Tspine lesion. Monday the knew it was an adenocarcinoma. Tuesday the TTF1 stain was positive so presumptive lung.
My oncologist recommended Carboplatin/Taxol/Avastin chemotherapy and wanted me to get a port put in and start the next week. I was put into contact with a thoracic oncologist at Sloan Kettering who suggested that Tarceva (a targeted therapy that is an epithelial growth factor receptor inhibitor, oral and less toxic than the chemo my oncologist had recommended) was probably the best option for me. I made an appointment to trot down to Sloan Kettering on Friday, March 21st. My oncologist was worried about my liver function (if too high it would disqualify me for any clinical trials, Tarceva and even the Taxol component of the chemo he had recommended) so I agreed to proceed with the port on Monday, March 17 and a recheck of my liver function tests. Unfortunately, they had shot up in 12 days (for those of you reducing this to an Excel spreadsheet (yes, I'm looking at you, Chris!) the total bilirubin was 1.5 (up from .5), AST was 133, ALT was 273 and alk phos was 280). He spoke with the guy at Sloan Kettering as well as my old friend Clark Haskins in Albuquerque and all agreed it was time to proceed with the chemo.
Emma came to Connecticut for spring break and was my chemo buddy that first day. Three hours for the Taxol, 30 minutes for the Carboplatin and 90 minutes for the Avastin and that was AFTER premedication with Zantac, Decadron, Benadryl and Aloxi. I felt fine that day and Wednesday. Wednesday afternoon I got Neulasta to boost my white cell production and felt like I'd been run over by a truck on Thursday and Friday. Oncologist restarted Decadron for a couple of days and by Saturday I was functional again. No nausea to speak of. Awful, terrible heartburn (I guess I'm finally making stomach acid with this little stressor in my life) so I started Protonix on Wednesday, then pulled a chemo brain boner and took Decadron instead of Protonix (the bottles look the same, I promise!) on Thursday and Friday so I was awake all last night and miserable. Starting to settle down now that the Decadron is in a different drawer.
Chemo will be every 3rd Tuesday for four courses and then we'll recheck a scan to look for disease response. I do plan to head down to Sloan Kettering at whatever point there is a new treatment decision to be made (more chemo? Tarceva? Study drug?).
I saw the oncologist for a followup on Tuesday and I am cautiously optimistic because the total bilirubin was down to .34, AST down to 102 and ALT and alk phos were essentially stable at 282 and 381. So a little bit better 7 days after chemo after that awful 12 day run up was a big relief.
The odds for this cancer are pretty dismal (<15%>65% chance of responding to Tarceva even if disease progresses on or after the three drug chemotherapy. It's really all about trying to manage a chronic disease, as best I can tell. I keep reminding Robert that, while I don't have the common sense of the average woodchuck, I tend to score in the 99th percentile on standardized tests so that's what I'm aiming for - to be a rare case of prolonged remission.
The other thing that has become clear to me over the last few weeks is that, while I harbor these stupid cancer cells, you all have this cancer with me. Those of you who elect to stick with me through this are voluntarily opting for fear, frustration and potential pain. I'm just playing the hand that was dealt me. So thank you and take care of yourselves.
The next time there will be any information about how things are actually going will be at the end of May, after the 4th chemo. I'm still at work and they are being wonderful, supportive and flexible. The Medaris cousins are coming up for lunch in mid-April. Robert and I are heading to Dallas the last weekend in April for my 25th year medical school class reunion dinner. We will also get to see my dear friends from the chemistry and biology departments at SMU, Lindsay (who will be in North Texas with the show she is currently touring), Lynn, the Pierces and Robert's aunt. End of May, early June will bring Chris, Sheri and Emma to Connecticut (Emma is finally turning 21 - why does it seem like it has taken 37 years? and Philip is turning 14). I plan to head for NM in mid-July to catch up with Emma, who will be shadowing Faith's vet for the summer, Faith and Bruce, Claudia and anyone else who finds themselves in the Land of Enchantment around that time. I will also catch some beloved opera in Santa Fe. Depending how things are going late August/early September, Robert and I will try to take an Alaskan cruise - the one thing I have really, truly dreamed of and don't want to leave this life without doing.
I think that's it for now. I promise I will call on you when I need something and keep you up with the news. We'll do our best to answer phone calls as they come. I love you all more than I can say.