The Assertive Cancer Patient

Getting to Know My Colon

In preparation for my appointment on Monday with the doctor who is going to do my poop transplant, I've been researching the colon.

A couple of things I didn't know:

The colon IS the large intestine. (I thought I had both a large intestine and a colon.)

The colon needs healthy bacteria to break down waste products (I did know that part), while the small intestine uses enzymes (didn't know that part).

--------------------

With my problem, C. diff., I have an infection (bad bacteria) that multiple rounds of antibiotics have been unable to cure. And the drugs have wiped out too many of my good bacteria. Hence, the need to get a transplant of healthy poop.

I know, I know. I'm calling it "the yuck factor."

Read more about this whole adventure: C. diff.

Here's a simple explanation of the colon from WebMD: the colon

In case you were wondering, having this procedure won't interfere with my getting T-DM1 in a clinical trial. Nor did the T-DM1 contribute in any way to my getting C. diff.--I most likely picked that up in the hospital. 

 

@ Jeanne Sather 2012

Waiting for the Phone to Ring

For the past few days I've been afraid I might have a UTI (urinary tract infection).

So I started looking for someone who could give me a ride to Dr. Lee's office, which is outside the five-mile radius for the van that takes residents of The Manor to medical appointments, but only on Thursday mornings. 

Seems like all my friends are either sick themselves or really, really busy. I had to ask four or five people before I found someone who could give me a ride up to Northwest Hospital to pee in a cup. Last night, I asked Andrea and she said she could take me.

I drank LOTS of water this morning to make sure I'd be able to give a sample. Managed that, and was told they would have the results in about half an hour and would call me. Well, that was three hours ago, and I haven't heard back yet. I tried calling once at the two-and-a-half-hour mark, but was told the nurse I needed to talk to was out to lunch.

Now, this is all pretty much par for the course, so I'm not angry. I'd just like to know.

If I do have a UTI, I will ask Dr. Lee's nurse to fax the prescription to the RN here at The Manor, and he will deal with getting the drug delivered from the pharmacy. (Yes, we have a male nurse. I quite like him.) This is one good thing about life at The Manor--they handle my meds for me. 

So ... waiting for the phone to ring. 

I think the subtext to all of this is that I feel very dependent, and I don't like that feeling. I don't like asking for help as often as I am ... more on this later as I figure out ways to cope with it.

 

@ Jeanne Sather 2012. 

Finally, I Fixed My Search Box

It only took me a year (or more) to get this fixed, but now the little search box at the bottom of the right column on my blog actually WORKS.

So search away, my friends.

For an explanation of how this happened, see: I Know, I Know ...

Shortages of Chemo Drugs?

Way back when, when I first started getting Herceptin, my oncology nurse told me about the bad old days when there was not enough Herceptin to go around. This would have been in the late 1990s, I'm guessing. 

My cancer center could only get enough of the drug to treat half the women with HER2-positive metastatic breast cancer who they thought would benefit from it.

I asked her if they flipped a coin to determine who got the drug and who didn't. She didn't answer that one, but clearly it was really hard on the oncology folks to not be able to treat everyone.

Not to mention how the patients must have felt.

Were they told, straight-up, "There's this great new drug that we think would help you, but we can't give it to you because we don't have enough"?

Grim.

I hadn't heard anything recently about shortages of chemotherapy drugs until this headline caught my eye: Cancer Drug Shortage That article details what the FDA is doing to address the shortages. 

One drug that has been in short supply is Doxil, which is used to treat ovarian cancer, multiple myeloma, and Kaposi's sarcoma after first-line treatments have failed. 

According to the Los Angeles Times, Doxil has been in short supply since last summer, and the maker, Johnson & Johnson, had (and may still have) a waiting list for patients who need the drug. ("Take a number, please, and we'll call you when your number comes up ...")

See: L.A. Times: Doxil Shortage

So now I'm really curious--how many cancer patients have been affected by these shortages? 

If you have any hard numbers, please send them my way. 

Also, if you, personally, have not been able to get a chemo drug because of shortages, please leave a comment below and tell us about it.  Or, if you'd rather, send me an e-mail. 

The FDA plans to import Lipodox, to be used in place of Doxil. 

See also: 

Beware of Fake Avastin

More on Fake Avastin

 

@ Jeanne Sather 2012. 

Monday Morning at the Manor

Polishing the Bed

I woke up this morning with a desire to polish my brass bed--this was my great-grandmother's bed, and I've slept in it since I was a child.

I have no idea why polishing the bed was suddenly so important, but it was/is. I got out the brass polish while waiting for my coffee to brew and read the directions on the back of the bottle.

This great-grandmother was my father's grandmother on his father's side. She immigrated from Norway to Minnesota and never lost that sing-song accent. After my great-grandfather died, she married his best friend and then her last name was Wee. (Actually, I don't know if I've spelled that correctly. I never saw it written.)

I also never knew her first name. My family just called her Grandma Wee.

Weaning Myself From a Cane

When I was at the rehab place, I used my cane most of the time. I always took it when I left the building--poor balance, plus I was weak.

Since I moved into The Manor several weeks ago, I've been weaning myself from the cane. Now, I don't even need it when I go out to walk. And I'm taking walks alone these days, getting to know my new neighborhood. This is progress! 

I have two canes with me, my beautiful vintage bakelite cane with the parrot head, and also a sturdier hand-carved cane that I got at Lake Quinault last summer. This one still has the bark on, except for a spiral cut through the bark the length of the cane. I don't have a photo of it, sorry. 

What My Readers Are Reading

Once in awhile I check my stats to see what you, my readers, are reading. Recently, quite a few people have been reading this post: Seth's Mom

I've been out of touch with Seth for months. So I guess I'll e-mail him today and ask him what's up. I hope it is not bad news. 

A footnote: Last night I was online reading about Norwegian patronymics. That's probably what made me wake up wanting to shine up my family-heirloom bed. 

When my great-grandfather (husband of the previous owner of my bed) immigrated from Norway, the story was that he changed his name from Rassmusson to Sather at Ellis Island. I wanted to know if the family was already using Rassmusson as a last name in Norway, or if it was a patronymic (meaning that his father's name was Rassmus).

According to information that I found online, Norwegians (and Swedes) used patronymics rather than surnames much later than people in some other countries. Since my GGF immigrated in the late 1880s, Rassmusson was most likely a patronymic.

Just one of those (weird) things I've wondered about for years. 

 

@ Jeanne Sather 2012. 

OK, I'm Procrastinating

I'm on the couch because the housekeeper has taken my bed sheets away to wash and hasn't brought them back yet. (She also washes my towels--what a deal!) I'm still in my yukata, and sipping at my second cup of coffee. It's 10:30. 

I got up at 8, but, as I said, I'm procrastinating ... playing on my computer instead of getting going with the things I told myself I was going to do today.

Of course, it's raining (again) and dark and cold. 

I planned to:

Do my laundry. (However, the machines are not available to residents until after 11 a.m. The house cleaners get them before that.)

Unpack and put away the clothes I brought over from my house on Thursday. It will be nice to have more to wear.

Walk to Trader Joe's to get some half & half for my coffee and some good yoghurt. Also, bananas. As I've mentioned before, I can't get myself dressed and downstairs for breakfast by 7:30 or 8. So I make coffee and eat either a banana or yoghurt in my room. So much more civilized. 

I guess I will shower and dress and throw my laundry in the machine before lunch. Then I can move it to the dryer after lunch ... not sure about walking to the store, but I do need the exercise.

Isn't this just fascinating? Life at The Manor.

Building a New Life

I'm trying to build a new life here, and it ain't easy.

One of my fellow cancer bloggers suggested TV and sleep as ways to get through days that feel too long. I hope he was kidding. 

I know that I need a purpose, and I think continuing with my blog will be that purpose, even though I notice my tone has changed. Where's the outrage I used to have? Even the Komen/Planned Parenthood drama--I wasn't surprised by that at all, and barely outraged. 

Other building blocks in this new life:

* Time with friends and Younger Son. 

* Exercise. Either walking or using my 3 lb. weights or stretching or all of the above. 

* Regular escapes from the building, either alone or with friends/YS.

* New friends. 

It will take more than this to make my life full and interesting, but I haven't found those blocks yet. Bingo? I don't think so. 

Enough, Already

OK, enough navel gazing and procrastinating. I'm making a commitment to doing the laundry and walking to the store. Oh, and going downstairs for both lunch and dinner. 

I'm not sure I can face unpacking my clothes. 

When those jobs are done, then, and only then, will I allow myself to stretch out on the bed with a book and/or my laptop. 

P.S.: This is the couch I had in my living room at the house: Couch

@ Jeanne Sather 2012. 

Cancer Blogs: Add Your Favorites

I often find myself attracted to a new (to me) cancer blog by the title. And there are some great titles out there. (I'm not ignoring the content, but it's a great name that makes me want to read the blog.)

For example:

The Daily Breast 

The Cancer Show

Pink Ribbon Blues

a little c

Great titles, all. Please feel free to add to the list by leaving a comment below.

These two blog titles are in my cancer blog title Hall of Fame:

The Cheeky Librarian (You have to know Teri's story to get why this one is so clever.)

But Doctor ... I Hate Pink

 

@ Jeanne Sather 2012

After T-DM1, What Then?

One of my "T-DM1 buddies" e-mailed me the other day, and she mentioned that her tumor marker is climbing on T-DM1, even though she still feels fine.

So it may be time for her to look for another drug. And there are some new ones out there. I need to start keeping a list, because the names are almost impossible to remember.

My friend sent me a link, published in December at the time of a cancer conference in San Antonio, that lists two new drugs: pertuzumab and Afinitor (everolimus).

You can read the details here: New Breast Cancer Drugs Show Big Promise

One thing that always distresses me is that these drugs don't work for very long before the cancer progresses. In one study mentioned in the article, Afinitor kept breast cancer at bay for a median of only seven months before disease progression.

I've been on T-DM1 for about a year and four months so far, and things seem pretty stable. My tumor markers have climbed a bit, but not enough to worry the study doctor, or so she says. I'm taking her word for it.

Anyway, I'm not going to worry about this yet. I've got to get my C. diff. cured first. One problem at a time, please!

 

@ Jeanne Sather 2012.  

More on Fake Avastin

Here's more information:

Fake Avastin Found in U.S.

Cancer Patients Fume Well, one did, anyway. Note that the story quotes only one person who is taking Avastin, despite the headline.

The link above quotes a price for Avastin that I believe is way too low. When I got it years ago, it cost my insurance company something like $7,000 a dose. Every three weeks. 

In 2008, a story in the New York Times said Avastin could cost as much as $100,000 a year.  See: Costly Cancer Drugs.

If you are on Avastin, I'd like to know what action, if any, you plan to take to find out if you received the fake drug or to make sure that you aren't given it in the future. Thanks. 

 

@ Jeanne Sather 2012. 

 

Beware of Fake Avastin

Counterfeit vials of Genentech's Avastin--used to treat several kinds of cancer--have been distributed in the United States, the company said. 

Cancer patients receive Avastin by IV at clinics and cancer centers, so I'm not sure how much you can do personally to make sure that your cancer center did not buy the counterfeit drug, which is missing the active ingredient in Avastin. But ask, anyway.

The FDA said a foreign supplier called Quality Specialty Products may have distributed the drugs.

For more information, see this story on Yahoo: Counterfeit Avastin Warning

Avastin is now approved to treat the following cancers: colon, lung, kidney, and brain.

At one time the drug was used to treat breast cancer, in combination with Taxol or other drugs (I was on Avastin plus Taxol six or seven years ago), but the FDA later reversed itself, causing a huge outcry among women with breast cancer who were receiving Avastin. 

For more on that issue:

FDA Advisory Committee Meetings

Avastin, Seth's Mom, and More

Cancer News

@ Jeanne Sather 2012. 

Missing Connie

For those of you who asked, Constant the Wonder Dog is fine. He's adjusting to his new life in Olympia (about an hour south of Seattle) with my friend Pat.

Pat is an athlete (triathlons, these days), and takes Connie for a long run every morning. She doesn't own a car, so she and Connie do a lot of walking as well. And of course they play catch (Connie has a tennis-ball fixation.) All this is very good for the beastie.

Hakusei also has a new home, with a friend of a friend. I haven't gotten any reports on him lately, but his new owners apparently fell in love with him on sight, so I'm sure he's fine. 

 

@ Jeanne Sather 2012.