What I needed now...

Given how cold a bald head can get, I needed a small, soft, close to the head cap that I could wear just around the house when I did not want to mess with hats or tying fancy scarfs. Or maybe to bed if my head got cold.

So what arrived in the mail today? The perfect soft little cap hand knit by Clara's Momma, the Senior Dr. Chen from Bethesda. See photo below.

Cap knit by Clara's Momma

Public Post- chemo hair - that bald head gets COLD

Post-Chemo Hair public wardrobe

Post Chemo Hair

Cycle 1 is past tense.

Cycle 2 began today.

My high school friend Elaine is visiting and drove me to Chemo. Despite her attempts to bribe Elizabeth, the chemo nurse, to again administer IV benadryl and ativan so she could make photos of me hanging upside down in the recliner chair, things went smoothly. I remember most of the day, had no problem finding my glasses, and did nothing (that I recall) to humiliate myself or entertain the rest of the room.

Fortunately for me that I am in the hands of a professional!

Elaine had to limit herself to laughing at me when I pulled out the "hand lotion" I had carried along, coated my hands with it and began to rub "body wash" into my hands in an attempt to moisturize them. It said "moisturizing" and "cocoa butter". Is it my fault I did not read the fine print part that said "Body wash" instead of "hand lotion"?

I guess it was. Still...

It did not help that my sister finally read the blog and called to ask if I was OK and chemo was going well or had we already gotten to that part yet where I hung upside down in the chair...and could she speak to Elaine please? (Cell phones - aren't they great?)

Thanks for your support, ladies. And whatever it was that you cooked up together while Martha was talking to Elaine on the cell, don't even THINK about putting it into motion. I really mean that.

This was the first day of the second 21 day cycle, so it went all day and I got it all. Taxol- my flower power drug; Carboplatin - my alkylating metal salt; and for the first time Avastin - the experimental drug that starves new cells of blood support, ensuring they will not survive. Plus an exam by the nurse practitioner.

The reference lab had once again lost the results for the labs that were drawn on Friday (this is my 4th treatment day and the second time they have lost the results - so far only a 50% success rate. If they do it again i will post the name of the company on this blog but for now I am going to give them a chance to get their act in shape) so I had to start the day by driving to the hospital to have the labs drawn and then had to wait for the results before we could start the chemo.

Elaine and I stopped for dinner on the way home and arrived at the house after dark to find an unexpected package at the door. A wonderful care package from Mac '74 Gina in Seattle who showed me how to blog by doing so about her own current chemo experience. Since Gina is a bit ahead of the learning curve on me with this "how to go through chemo" experience, she enclosed all that things she assures me I will need most, including a lot of bath items.

My favorite was the floating rubber duckie.

Elaine however is enamored with the handmade item called "Butte View Soap". I feel confident that in Washington State "Butte" is pronounced "Beaut" and this undoubtedly refers to the location where the soap was produced. Elaine, however, insists that "Butte" is pronounced a different way and seems to think that every time I use this cosmetic product it will oblige me to preform an act involving a car window, an unsuspecting innocent bystander and a moon... I am resisting Elaine's recommendations, but if I do comply and get into trouble I suppose that it may be helpful that Gina is a really smart lawyer.

Meanwhile, Elaine and I are finishing out the evening by using fake champagne (the non-alcoholic sparkling peach juice type) to toast the completion of the first cycle, the successful start of the first cycle, and the evidence that every thing is working as it should provided by the progressive shedding of my hair.

Tomorrow night we will close out by toasting to friendships old and new.

And if the job is not finished by the successful progression of natural events, Wednesday morning before she leaves we will visit Target, acquire some clippers for Elaine can shave my head before she boards her plane.

What, after all, are old friends for?

What I got for Christmas...

an end to the suspense - will I lose my hair? yes, When? now.

Do I really look more like my Dad?

Hair coming out by the handfuls in the shower this morning leads me to suspect what Santa will be bringing me this Christmas, beyond the lovely things you all have already deposited under my tree, will be a bald palate.


Lucky I invested in all those brights hats and scarfs...

What do I need now?

Thanks to all of you who have so generously asked about what I need. At the moment, my needs are relatively small and simple.

Re: your concerns that I may spend the holidays alone:

I did decide this was not the year to try to travel far to spend the holiday with any of my siblings or distant friends. My energy and endurance from day to day and still too much of a day by day experiment to want to put myself in a position where I could not retreat however inconvenient it became for me or my hosts.

But I will not be spending the holiday alone.

Christmas Eve day (Dec 24) I have to drive to Gainesville GA for labs. That will be about a third of the way home (Sylva). So I plan to just drive on, spend the night with high school friend Ginny and take in the Candles and Carols service at First Baptist, the Coward open house, and the tail end of the Ginny Walker Middleton & children and grandchildren Christmas Eve dinner - or at least as much of this as my energy will sustain. Over the decade that I worked Christmas at cherokee hospital while Dad was still alive this pretty much became my holiday tradition anyway.

I have an open invitation to drop in and visit a friend from Atlanta and her mother at her mothers new place in Tococca, Ga on the way to or from Sylva, and if my energy permits will visit.

I have another invitation to a drop in brunch on Christmas day and a family dinner later on Christmas Day in Atlanta, both from people I work with.

And since she will spend Christmas day accompanying one of her oldest ATlanta friends who shares her assisted living home to a family dinner, I will spend some time visiting with my Aunt Marian (mom's college room mate and now a 91 yo retired dentist in Atlanta) on Sat Dec 26.

On Dec 27 my high school friend Elaine arrives to take me to Chemo on monday Dec 28, and just to visit through Dec 30.

So I am booked. Possibly overbooked for my energy level. this is terrific as I rarely have even half as many options. My social life was never half this busy when I was healthy. Another side benefit of this disease.

So thank you all for your concern and kind thoughts but don't worry, I will not be spending the holidays alone.


Re: What I need after the holidays:

Mainly I need transportation to and from chemo on every Monday between Feb 1 and about mid-April.

This requires departing my house at about 8 AM on Monday and driving to Gainesville, GA, a drive that is just under 40 minutes from the time we leave my house until we are sitting in the doctor office parking lot, even taking into account the time required to drive through McDonalds and pick up the breakfast I always buy for myself and my chaffeur en route. Time required for chemo is variable, but last Monday I was finished by 11 AM and we were back by noon, even accounting for the time required to stop at a Cracker Barrel and buy myself and my transporter lunch. Other Mondays have taken longer but still had us back by mid-afternoon.

The Mondays starting Dec 7 through Jan 18 are already booked with confirmed volunteers.

Any dates after that can be claimed.

Just send me an email with your preference and I will confirm and pencil you in on my calendar.


Re: concerns that I may not be eating well enough

Never fear. My freezer is still stuffed with excellent home cooked healthy meals that cousin Jane and sister-in-law Debbie left behind. All I have to do is pull them out and thaw in the microwave.

And the junk food gap has been adequately filled by my considerate if less domestic friends here. In fact, this past Monday after a streak of Christmas chocolates (that did not make it to Christmas) and other treats provided by friends, I discovered at weigh in that I am possibly the only chemo patient in the history of chemotherapy to actually gain weight while receiving chemo.

Since the primary side benefit of this disease has been the weight loss that accompaied surgery and chemo, all I can ask is - cut it out. Please don't make it any easier for me to fall back into my old sweets habit. (maybe I should not blame my friends for my absence of will power and self-control, but why not? I am taking it easy on myself for the time being.)

Again, thank you all for all of your support.

Louisa

Aunt Rita who assured me it was 7 PM in Arkansas (foreground) with her sister Alice at Aunt Rita's 85th birthday party

So how am I doing? Part 2 on Dec 21, 2009

All in all I am doing really well. Truly.

Those old horror stories about chemo and nausea? They have pretty much solved that one by developing better meds to control / prevent nausea. For myself, for 48 - 72 hours after I get chemo I take a medication called Ondansetron HCL (also known as Zofran) every 12 hours starting about 12 hours after I presented for chemo and got my pre-meds. (Pre-meds are medications given before chemo to prepare you for the chemo itself).

That means tonight I will take the first dose at about 9 PM. Then I will take it every 12 hours through Tues and Wed and probably, depending on how I feel, on Thursday morning.

I also have another medication that prevents nausea called Prochlorperazine (also known as Compazine) that I can take every 4-6 hours when I need it.

I take the Zofran every 12 hours religiously. I take the Compazine only if (but immediately when) I get even a hint that I may be vulnerable to nausea. This means that I take the Zofran every 12 hours at 9 AM and 9 PM, and for the first day or two after chemo I take the Compazine usually at what I think of as change of shift for the 12 hour pill. By about 7-8 PM its effect is starting to wear off. But I am not supposed to take it again for another hour or 2. So I take compazine instead, and it eliminates any nausea during the period of time when the prior Zofran dose is wearing off or the new Zofran dose is building up its effect. All in all it works very well.

The only problem was one morning when I made the mistake of taking my pills before I put my glasses on. No problem taking the Zofran. But when I intended to take the Compazine, I mistakenly took a pain pill (oxycodone) instead. Dumb mistake, and potentially really dangerous.

In this case it was not so bad. When I vomited I immediately suspected my mistake. It was easy to correct that part by taking the Compazine. But I could not remove the effect of the pain med and had to stay home from work because it was not safe to drive.

I am no longer allowed to take meds unless I have my glasses on. A really dumb and dangerous mistake that I do not intend to repeat.

So put aside those visions of having to stop by the side of the road to vomit outside the car. That is historic, and really no part of my chemo experience. Which is terrific to date.

Some of this maybe because of my meds. I find that the nausea was stronger after the first dose of the first cycle (day 1 Dec 7 when I got flower power Taxol plus alkylating metal salt Carboplatin) than it was after the second dose (day 15 Dec 14 when I got only flower Power Taxol alone) or the third dose (day 21 dEc 20 [today] when I again got Taxol alone).

My primary symptoms is fatigue, which varies from day to day and hour to hour and is a bit unpredictable to me. While I like to go into work and try to do so on Tues - Thurs as long as possible - the irony is that I am actually probably more productive when I work from home because I can adjust my work schedule to accomodate the fatigue. (work a couple of hours, nap for a while, then work a couple of hours again, then nap for a while).

Since I was producing this special report for months before I had surgery and chemo, we know it is a reasonable expectation that updating and distributing it takes about 2 8 hour working days. But I produce it over more than 2 days - basically as soon as I distribute one I make a new draft for the next one and update it a little bit almost every day, including working on the weekend since I distribute it at the beginning of the week. But however many days I work on it, it all counts for 2 work days of production. The third work day is split between various short term tasks - consulting for PDU, performing a peer review for the medical literature, whatever needs to be done. This works pretty well so far and I am able to take 2 days medical leave a week (mondays for chemo and fridays for lab) and work the other 3 days.

As the chemo progresses I understand that the fatigue may get worse. As that happens I may need to switch to 3 days of medical leave a week and only 2 days of work. And I may need to work more from home either because of the fatigue or because my blood counts go low and there is too much risk of infection if I go in and work with the crowd.

I am lucky that my employer and the terms of my employment will accomodate this. Any CDCers who are following this blog, you might think about whether you have tasks that I could do for you as time goes on to make that 3rd day productive, or if the H1N1 flu response declines to a level that makes my special report no longer of value, or reduces the time needed to produce it to less than 2 working days.

I do want to carry my share of the load as much as possible. it is good for me and hopefully also good for the agency.

But so the chemo itself has not to date been a major problem. However, I also get pre-meds - medications given before the chemo to prevent problems with the chemo. Ironically, these drugs, intended to protect me, have been a problem.

Day 1 cycle 1 I was pretty dehydrated when I arrived at the office. I got a large dose of steroids but began to have an allergic like reaction to the Taxol, so I was also given benadryl by vein. That made me pretty loopy and caused me to sleep most of the time. My dear high school friend RN Ginny had accompanied me, and I understand she took the time while I was dozing to discuss our high school days with Elizabeth, the wonderful chemo nurse. All I can say is, other high school RN Friend Elaine will accompany me to chemo on Dec 28 and can use that time to clear her name and improve her reputation... (Actually it probably is true that Ginny and I were hopeless do-gooders and Elaine always got us into trouble (minor trouble)- and into fun ... but since the adult Elaine has a reputation to maintain....) (Actually it occurs to me, maybe it is Ginny and I who should be worried about correcting our reputation as hopelessly dull do-gooders....Elaine frankly is probably not going to be a great deal of assistance with that, but I will work on it. After all, adult Ginny and I also have reputations to maintain).
Since I hardly slept for 2 days after chemo, I deduce that steroids make me hyper.

Apparently Elizabeth instructed me to take Zyrtec daily in advance of my next chemo to prevent allergic reactions. Unfortunately I had no memory of that and so did not.

So when I arrived for Day 8 cycle 2 dose 2, i got premeds of steroids but also, as a precaution, a large dose of IV benadryl - an antihistamine meant to combate allergic reactions. Shortly thereafter I was unable to keep still and had to keep moving my legs. I recall shaking them out a bit and frequently shifting positions. But the nurse tells me I was standing up, shaking them out, and other things that were generally disruptive.

So I got a dose of IV Ativan - a drug related to valium. the last thing I remember is calling Karla the playwrite who drove me to chemo that day to tell her we were a little behind schedule and asking Elizabeth if I could have some additional Ativan since my legs were better but still not quiet. That was about 1 PM on Dec 14.

The next thing I remember is being awakened at 8 o'clock by a phone call from Aunt Rita from Arkansas. I was home in bed in my PJs and underwear. This was puzzling because normally I (and most of the world) do not wear underwear under PJs. One dog was inside but the other was outside. This was puzzling because they usually hang together. My glasses were missing. And I tried to use environmental clues to tell me whether it was 8 AM (in which case I needed to be getting to work and preparing to take my Zofran and compazine). Or if it was 8 PM in which case I only needed to take the meds. Eventually I gave up and had to ask Aunt Rita "What time is it in Arkansas right now? YEs, but is that AM or PM?"

It was 8 PM. Even now, a week later, I am completely amnestic (have absolutely no memories) for the time between 1 PM and 8 PM on Dec 15. And I still have not found my glasses.

But I know a bit about what happened, because other people have filled it in for me. When I called the clinic to ask about my glasses the receptionist started laughing and said "You were not entirely with it when you left last Monday", a clue that whatever was going on was more entertaining than annoying.

Elizabeth the chemo nurse responded tactfully to my inquiries, assuring me that I did have a, uh, bit of a reaction to the meds but was able to leave under my own power with assistance from playwright Karla, but no, she did not find my glassses there. And she reminded me to get Zyrtec and take it religiously in the evening in advance prep for next chemo.

Karla was also tactful. She assured me that I was able to get into the house, the PJs and the bed under my own power. No, it had not been necessary to call her husband or the neighbors to sling me over a shoulder and haul me inside. She also assures me that while I was rather incoherent the entire way home, I was consistently polite and solicitous of her well being. She assures me that I did not drool on my shirt (or anything else) and rarely outright babbled, ... although it was frequently rather difficult to understand what I was saying when I attempted to be politely solicitous. She once stated that she did not understand me and apparently I assured her that was OK, I did not understand myself.

She also has no idea where my glasses are, but noticed they were missing at some point on the ride home. I suspect they are lying somewhere in the grass outside the clinic.

But she did volunteer to drive me again on Jan 4. From this I deduce that either (1) it was not all that bad; (2) it was every bit that bad but funnier than anything else recently encountered; (3) it provided great subject matter for her next play; (4) since her husband is a brilliant physicist who specializes in chaos theory, it was useful insight into the matter with which he occupies his professional days; or (5) Karla is a very very nice person. Well, we already knew that part 5, huh?

The most revealing information came from people who had no ongoing responsibility for me and therefore felt no need to be tactful. When I arrived for chemo today an older woman was there with her daughter. She looked very very down cast, as she had just learned that she could not get chemo that day because her white counts were too low. She seemed very discouraged and seemed to fear that this meant she had done something wrong or would have a poorer outcome. I felt badly and tried to cheer her up by assuring her that every one's counts go down at some point or another, but it did not seem to really help.

Then I asked Elizabeth about last week and my pre-meds. The other patient's face brightened up and she said "Was that you? Are you the one who was lying with your head down here and your feet up there?"

Apparently at some point I decided that the recliner chairs were improperly positioned and took it upon my self to reverse the pull of gravity. Apparently at some point I also decided the window shades needed improvement and took it upon myself to wander over and readjust them. Apparently I was so bad that Elizabeth, the chemo nurse, had had to solicit the assistance of all the other Chemo patients to keep an eye on me and let her know when I needed intervention.

Apparently it is not always an advantage to be a self-starter.

And apparently it was very very entertaining, deduced from the way the other patient's face brightened up and she could not help laughing when she described the previous week to her daughter. At least she left feeling better about how she was handling her own Chemo. Low counts? That could happen to anyone. Rowdy drunk sitting upside down in the recliner chemo chair and requiring the assitance of all the chemo patients combined to remain contained? Hey, she had not stooped that low yet.

How embarassing - apparently I am a cheap but entertaining drunk.

Well, at least I brightened someone else's day. And made her feel more competent about how she was handling her own chemo experience.

Today (dose 3 cycle 1) between the daily pre-treatment with Zyrtec and an additional oral dose of antihistamine we were able to skip the IV benadryl and the chemo when smoothly and without complications. I remained upright in my chair and left the shades alone. In fact I tried to remain as inconspicuous as possible, which possible did not benefit the other patients as they were left with only magazines and TV for entertainment. I was perfectly pleased to remain anonymous and to entertain nobody.

Well, at least it is no mystery how I lost my glasses.

And that settles the question of whether, as time goes on, I will be able to drive myself to and from Chemo. To possibly, from never.

Jake and Balsam's cousins - note marked family resemblance

Somewhat faithful Bear Hound Balsam ("W VA Walker Balsam") failing to cooperate with the indignity of posing for Christmas photos 2008

Faithful dog Jacob P Dawg Chapman, patiently suffering the indignity of being required to pose for Christmas photos in 2008

About Chemo

So people keep asking me about my chemo (mostly medical types but also normal people) so this entry is intended to be a primer.

The clinical trial in which I am participating, GOG-252, has 3 arms. The first Arm is mine, and uses only standard intravenous (IV) therapy. The other 2 arms also use standard intraperitoneal (IP) therapy.

In Arm 1 I will receive 6 cycles of standard chemotherapy, each cycle 21 days (3 weeks) long.

Each Monday of the cycle (days 1, 8, and 15 which for me on my first cycle are Dec 7, Dec 14, and Dec 21 (tomorrow) I get a standard drug called Taxol (generic name Paclitaxel, also called Onxal) at a dose of 80 mg/m2 each Monday - total dose for the cycle is 240 mg/m2, which is actually a bit more than standard therapy. but since it is split into 3 doses (standard is a smaller dose but all given on the first Monday) there are fewer side effects.

Taxol belongs to a class of drugs called "plant alkaloids". As you probably guessed, plant alkaloid drugs are made from plants. Closely related drugs, the "vinca alkaloids" are made from the periwinkle plant. Since periwinkle blue is my favorite color, I like that idea. However, since they don't let you select your chemotherapy based on color preference, I am not taking one of those. Taxol is in a category of plant alkaloids called Taxanes, which are made from the bark of the Pacific Yew tree. Which actually still sounds pretty cool - rather hippie-oid I think. So I think of Taxol as my "flower power" drug and am trying to view this whole chemo experience as a second change at experiencing the 60's, since I missed important parts of that whole era the first time around by spending most of my time inside studying while every one else was outside, getting high, tuning in, and ... whatever - having fun and aging their skin.

Taxol and other taxane drugs work by interfering with the ability of microtubule structures within the cell to develop and function properly. Cancer is a problem because cancer cells lose the normal "brakes" on reproduction and just replicate themselves out of all proportion and reason, using up space and resources originally intended for other normal cells and ultimately just taking over, and killing off, the host. Not very considerate of them if you think about it. Microtubles (scientific name for lots of tiny little tubes) get generated and used as an important part of a cell's ability to divide and replicate itself. So by inhibiting (interferring with) these tiny little tubes that are inside cells and used to make new cells, Taxol interferes with the cancer cell's ability to reproduce itself and ultimately leads to cell death. Too bad for the little cell but actually very very good for me.

On the first Monday of the cycle (Day 1) I also get a second standard drug called Carboplatin (trade name Paraplatin)at a dose of 6 units IV (which is the standard dose).

Carboplatin belongs to a class of drugs alled "alkylating agents", also referred to as "cytotoxic" agents ("cyto" = scientific word for living cell substance and "toxic" scientifically refers to, well just what you would expect, toxicity or poison, so this is a substance the poisons or is toxic to living cells. or antineoplastic agents. (Again, "anti" is scientific short hand for "against" and "neo" is science talk for "new" and "plastic" is sort of science talk for living stuff so "antineoplastic" is a scientific phrase meaning this is stuff that works against new living stuff).

Carboplatin is an alkylating agent (antineoplastic or cytotoxic agent) that has most of its effect during the resting phase of a cell's life. Carboplatin is in a family of alkylating agents called "Metal Salts", so while i am unclear on exactly where they come from, I don't think it is from flowers. I suspect these are cooked up by chemists in artificial environments like labs. No flower power here. In fact, another group of alkylating agents are the mustard gas derivatives. Remember the terrible Gas attacks that troops experiences in the trenches of Europe during WW I? Or that Kurds in northern Iraq experienced under the command of Saddam Hussain's henchman "Chemical Ali"? Those gas attacks used Mustard gases. So that old gas mask up in great-granddad's attic was intended to protect him from things now being flung at cancer cells in a more targeted way.

Since Carboplatin has most of its effect during the resting phase of a cell's life, this means that while the first drug - my flower power drug Taxol, attacks cancer cells while they are trying to make additional new cancer cells by messing up the tiny little tublules inside the cell that the cells needs to reproduce, this drug, Carboplatin, works while the cell is taking a break and just resting. So the poor little cancer cells can hardly get a break since this combination delivers a one-two punch whether they are working to reproduce or just sitting around trying to rest and recuperate. (Actually I don't feel very sorry for the poor little old cancer cells and honestly, I don't really think you should either. If they were not misbehaving in the first place we would not be throwing alkylating agents and plant alkaloids at them in the first place.)

So the drill is this: Cycle 1 day 1 (Monday Dec 7) I get a big dose of flower power Taxol that attacks cancer cells while they are trying to reproduce by messing up all the tiny little tubules within the cells, followed by a big dose of my Alkylating agent/metal salt (closely related to that Mustard Gas agent floating over the WW I trenches) that attacks cancer cells when they sit down to rest.

A week later (Cycle 1 Day 8 - Monday Dec 14) I got another dose of flower power Taxol. And a week later yet (Cycle 1 Day 15 which is tomorrow Monday Dec 21) I get yet another dose of flower power Taxol. Which should make it pretty inconvenient for cancer cells trying to make more cancer cells.

Then the next week we start a new cycle with flower power Taxol + alkylating metal salt Carboplatin (Cycle 2 Day 1 monday Dec 28) to interfere with reproduction and resting, followed by 2 weeks of flower power Taxol alone (Monday Jan 4, and Monday Jan 11) to keep messing with those tiny little tubes within the cells.

Why, you may ask, do I get 3 doses that interfere with tiny tubules and cell reproduction for every 1 cycle that messes with the cell's ability to rest? Well, actually I have no idea. But I would guess it is because cancer cells spend a lot more time reproducing more cancer cells than they spend just sitting around trying to rest.

Any way, this whole 3 week cycle will repeat itself 6 times (Cycle 1 = Dec 7, 14, 21; Cycle 2 = Dec 28, Jan 4 & 11; Cycle 3 = Jan 18, 25, & Feb 1; Cycle 4 = Feb 8, 15, 22; Cycle 5 = March 1, 8, & 15; Cycle 6 = March 22, 29, & April 5). That assumes, of course, that each cycle goes off on schedule and does not have to be delayed.

Why would a cycle have to be delayed?

Well, these drugs are not as smart as we would like them to be. So they do a good job of interfering with cancer cells that are reproducing, but they also do a pretty good job of interfering with normal cells that are reproducing. What cells are those? Hair cells obviously - that is why most chemo patient get bald at some point or other. Blood cells also, which is usually the limiting factor. If too many of my white blood cells get knocked out, they may have to delay a cycle to allow them to recuperate a bit.

But for now I am assuming that I will complete the standard part of this chemo therapy regimen about the middle of April.

Now there is a third drug in this trial - Avastin. That is the experimental part that makes it a clinical trial.

All the women in the clinical trial will get an experimental drug, Bevacizuma, also known as Avastin, starting on the first day of the second cycle (for me, Monday Dec 28). Thereafter we will get that same drug on the first day of each 21 day cycle. However, while the regular chemotherapy ends with a last dose on April 5 (assuming no delays), the Avastin will continue on day 1 of 21 cycles, which is day 1 of cycles 2 - 22. This means after I quit getting the standard chemo on April 5, 2010, I will keep getting this experimental drug on the first day of each 21 day cycle for a total of 336 more days, which is nearly a year after I finish the standard chemotherapy. So I won't be a totally free woman again until sometime in the late spring or early summer of 2011. (which sounds like an awfully long time).

What is this Avastin? Avastin is a monoclonal antibody that is an "antiangiogenesis" agent. Antibodies are things that our own white blood cells produce in response to infections. When we get sick and afterward are Immune to that disease, that immunity is in part because our healthy white blood cells made antibodies that attack the same infection if they see it again. When we get vaccines and are protected by them, that is in part because our white blood cells make antibodies that attack the infection the vaccine was designed to protect us against.

So how does this work with cancer? Well normal natural antibodies that we produce for our protection are multiclonal - which is scientific talk for many versions ("multi" = many, "clonal" is like a family line - so multiclonal = many types, but monoclonal = 1 type only (mono = 1 or all alike).

Normal healthy antibodies that we produce attach to infections and mark them for destruction by our own immune systems.

This monoclonal antibody is targeted specifically to attach only to a protein produced by a cell (cytokine) called human vascular endothelial growth factor (VEGF). VEGF is produced by cells and leads to the development of new blood vessel formation (angiogenesis, "angio" = blood vessels and "genesis" means "In the beginning..." just like in the Bible, so angiogenesis is the beginning of blood vessels. Blood vessels bring food to the cells and take wastes away. So without the ability to form blood vessels new cells will starve while sitting there stewing in a cesspool of their own wastes.

Avastin is a totally new approach to cancer treatment that was approved by the FDA on the fast track a few years ago because it was proving so effective against colon and prostrate cancer, and it has also been approved for use with breast cancer although it is not clear that it is as effective there.

We don't know how or whether it will work for ovarian cancer, but it seems worth while to try it. And at the end of this research experiment, at worse doctor's will know a little more about how to treat cancer patients best. And at best I may get some benefit from having this additional line of attack on my cancer cells now.

Now in addition to the chemotherapy drugs, which are given to make things inconvenient for the cancer cells, I get other drugs that are intended to protect me from the chemotherapy drugs.

So since lots of people have allergic reactions to the Taxol, and I myself had a mild one the first time I went for chemo, before I get Taxol (my flower power drug) I get large doses of steroids (a cousin of the drugs athletes take to beef up faster and that lots of people with asthma take when they have a serious asthma attack) and of benadryl (an antihistamine, which many people take for allergies routinely) and sometimes of ativan. These drugs make me a bit manic, very loopy, and after the second dose of chemo last Monday left me amnesia (memory loss) from about 1 pm until about 8 pm that night. Wierd and spooky.

So while the chemotherapy drugs are not so bad, the medications i get first make me a menace on the highway. As a result my primary support need now is for someone to drive me to and from chemo every Monday. While I might do very well getting there on my own, I would clearly be in no condition to drive myself home, not because I am sick but because I am effectively drunk.

OK - a long discourse. Enough for now.

Again, thank you all for your support.

Louisa

So How Am I Doing?

How Am I Doing?

 

So far going well and I love the fringe benefits of this disease. (1) without any particular effort of will power on my part I have lost almost 30 pounds since pre surgery. (2) by starting chemo on Dec 7, I simultaneously turned 57 while getting medically reclassified as “Young and healthY” (...”young and healthy people like you have a better outcome than the overall statistics of 20-40% 5 yr survival”...)

 

So far going well, but I have not yet had to cope with losing my hair or gaining oral and GI ulcers. Still I can’t complain. I feel amazingly well, I have wonderful insurance (Tricare) and a generous medical leave policy, and have been almost overwhelmed by the support I have received from family and friends both nearby and far flung.

 

While I would not recommend an exploratory lap or chemo for your next vacation, I have to say that compared to what I was expecting based on what I observed during my residency more than 20 years ago, this is a whole new world.

 

I undoubtedly benefited from an excellent surgeon and surgical team, including the post-surgery nursing staff at Emory. But I have also benefited from advances in surgery and management of peri-surgical complications including pain. Thanks to an epidural and excellent pain management I really was minimally uncomfortable following surgery. Initial efforts to get up and walk were not particularly fun, but I can honestly say that gas pains were the worse thing.

 

They now clamp these pneumatic devices on your ankles that alternate compression massage of your calves post op – which was WONDERFUl. I found myself pushing the assitance button in the middle of the night and saying things like “Could someone please remove the spa treatments from my legs and assist me to the rest room?”  I recognize the intent was to decrease the liklihodd of a life threatening blood clot in my legs, but the effect was really luxurious and relaxing.

 

And these days you are immediately issued post op an elastic abdominal binder similar to the ones that men who do heavy lifting on the job wear to protect their backs. This terrifically decreases the stress on the abdominal muscles in the post-op era and made it much easier and more comfortable to move, get up, walk and so on.

 

And of course I benefited massively from the assistance of cousin Jane and Sister-in-law Debbie for the first couple of weeks after surgery.

 

As for chemo – the old days of nausea and vomiting are apparently history. For me at least, the new meds are remarkable. The only time I had any problem with nausea was when I made the mistake of taking my meds before I put my glasses on and, as a result, mixed up my compazine and my oxycodon. That resulted in a little vomiting and a day of napping instead of work, since it was easy to reverse the nausea with meds once the error was recognized, but removing the effect of the already ingested narcotic was not so simple. A really dumb and dangerous mistake. I now have  firm rule that I am only allowed to take medication when I have glasses on.

 

The nausea is controlle with a pill I take every 12 hours and another shorter acting one that I take when needed (compazine). For the first 3 days after chemo as long as I religiously take the 12 hour pill on time I have minimal awareness of nausea. For the first 2 days I usually take the short acting compazine one at what I think of as “Shift change” (pop it an hour or 2 before the next dose of the 12 hour pill is due) and that suppresses any discomfort as the longer acting pill is wearing off.

 

Really it is pretty amazing how well these medications work these days. I feel very blessed.

 

My energy is variable. To date I have been able to take medical leave on Mondays (for chemo) and Fridays (for lab work) but work either from CDC or from home the other 3 days of the week. I admit I am not as productive as I usually am, but I have been able to consistently develop and distribute the weekly special report on H1N1 response that I have produced since last spring, and do a bit of additional consulting with the Plans Decision Unit, peer review for the medical literature and other odds and ends. I anticipate this may decline as time goes on, but for now it is working well for me.

 

So put away those visions of me languishing alone and ill at home. I am getting out several days a week, accomplishing at least a little bit at work, and generally except for fatigue feeling really quite well.

 

But thank you very much for your concern. I can’t say often enough how very appreciative I am of the incredible support you all have provided.

 

I intended to provide an update on chemo, but it seemed more important to address these concerns that keep coming up. And my energy is a bit low right now. So I am deferring the chemo update for another day.

LouisaECChemoDiary

For the record, it appears I have the most supportive circle of family and friends in the world. You all have been amazingly supportive over the past month. In return I have been less effective in communicating back. Let me start by stating clearly how deeply touched and supported I have been by your communications. Never doubt that it makes a remarkable difference. I really really really appreciate every thing you all have done to support and help me.

I started this blog because I am finding it impossible to maintain adequate communication with every one. So at the suggestion of several friends and relatives, I will be periodically updating this blog on my status as I move through this medical journey.  You all are welcome to check in as frequently or infrequently as suits your interest.

Just to get everyone to the same page - this photo of me and my cousin Nathan (well, to be specific, one of my several cousins "Nathan", but at this point I think the most senior one) dates from last March 2009 when we had a rather large family reunion in Wilmington, NC to celebrate the 85th birthday of my Aunt Rita, more than a year after she finished taking chemo for ovarian cancer. 

That is the same Aunt Rita who called from her assisted living home in Arkansas the night before my surgery to assure me that if they were needed she and cousin Robbie would come immediately to take care of me.  (Well, one of my several cousins "Robert" but at this point, I think, the most senior one). 

Digression: 

The Chapmans / Walkers / Hyatts /  all suffer from that southern British-Isles-descent syndrome where at some point early in human history each family was issued only 3 or 4 male first names that they have to keep shuffeling about in combination with maternal maiden names to cover male offspring for generation after generation. Think I exaggerate? Ask me how many cousins "James" I have (on both sides of the family). Ask me how many men on the Chapman side carry "Davis" as their first or second name. Ask me how many decendents of the Robert Walker who landed with the first ship in the Mass Bay Colony are currently named Robert? (Actually I have no idea, but at least 3 from the western North Carolina branch that I know of). Ask me how many "Judsons" were hanging out in the NC/GA portions of the family as of March 2006 (at least 5 that I can immediately count). Ask me the largest number of roman numerals officially carried after the last name of a contemporary male cousin (V - I think). Ask me how many...well that is enough for now. Back to the main point. 

Thanks for all your love and support!

 

In early October 2009 my doctor evaluated me for swelling of my right leg, assumed to be due to long hours sitting working on H1N1 Flu response and long standing venous insufficiency in that leg (Varicose veins for the non-medical). Tests showed no evidence of a blood clot, so I was cleared to depart for a long planned vacation as long as I took appropriate precautions.

I had a wonderful trip to Italy and Kosovo between Oct 11-22, but returned a couple of days early because the swelling continued and worsened. To make a long story short, this time the evaluation still showed no evidence of blood clots, but did identify masses in my pelvis that were compressing the right iliac and common iliac veins. (Big veins in the belly that allow blood to return from the legs). 

October 30 I underwent major abdominal surgery (exploratory lap) that identified ovarian cancer stage III C ( meaning a large mass on each ovary,a few implants on the colon and in the pelvis and cancer cells in 3 of 4 lymph nodes).  (For you medical types, Papillary Serrous adenocarcinoma, high grade). The good news is, the surgeon was very very confident that he was able to debulk (remove) all tumor, and there was no ascites (fluid in the belly). These make it more likely that I will have a good response to chemotherapy.

     Recovery from surgery was easier than I anticipated (still would not recommend it for fun) in no small part due to the decisions by my cousin Jane and sister-in-law Debbie to come stay with me for the first couple of weeks after surgery - during which time in addition to waiting on me hand and foot they did a lot to improve the organization of my home. 

     Next major decision was what to do about chemotherapy - with options being standard intravenous (IV) chemo (by vein), standard intraperitoneal (IP) chemo (put directly into my belly) or join an investigational trial. After much helpful consultation from the Emory surgeon and oncologist (Dr. Ira Horowitz and Dr. Joan Cain - both excellent and recommended) and with colleagues who are oncologists (N=1) or who know and consulted 1 or more oncologists (N=many many many) in the end I decided to join a clinical trial.

The trial, GOG-252 (stands for Gynecological Oncology Group), randomized the women who participate in it between 3 arms. Regardless of which arm they are in, they will get some variation on standard therapy. One arm is IV therapy, and the other 2 are IP therapy. All 3 arms are tweeked a little bit from the usual standard in ways that evidence suggests or there is excellent reason to believe will be improvements (fewer bad effects, more benefit).  In addition, all women enrolled in the trial will get the new drug Avastin in addition to standard therapy. This drug inhibits the ability for cells to develop new blood supplies (inhibits angiogenesis). Since the blood supply to a cell provides nutrition, this drug basically starves new cells. Since cancer involves lots of new cells, it has been remarkably effective in some cancers (colon, prostrate). There is no real experience with ovarian cancer, which is why it is a clinical trial. But evidence to date makes many people hopeful that it will offer real benefit and suggests that is it unlikely to cause harm. 

So in other words, if you enroll in the trial you get a variant of standard therapy, so you lose nothing. But in addition you get an additional new drug that may or may not help. At best it helps and you get a much better outcome. At worse it does not help and by participating in the trial you contribute to the development of knowledge that allows doctors to be smarter in how they treat patients with similar problems in the future.  Well, OK, the real worse is that you have an adverse reaction to the drug and something bad happens because you took the experimental drug, while you gain no benefit.  While that is possible, I think the liklihood that it will happen is low enough that I am willing to take the risk.

So I enrolled in clinical trial GOG-252, was randomized to arm 1 (standard IV therapy plus Avastin) and began chemo therapy on December 7, 2009 - my 57th birthday.

Tomorrow I go for my second day of chemo. Since I am a little tired tonight, I will leave the update on the first and second chemos until after I get home tomorrow. Or possibly one night later next week.  

Again, thanks for your wonderful support.