The Assertive Cancer Patient

Question About Tumor Markers

A reader posted a question about tumor markers to my blog the other day.

Here's what she wrote:

... Do you know how high the CA 27-29 tests can get? My mother-in-law has breast cancer that has metastasized to her bones. She has already had a spine surgery and also most recently a break in her right leg. Her level has increased dramatically in the last few months.

I have not been able to see how high the markers can get. I appreciate anything you can tell me as it seems that you are very aware of the various tests/markers. I also hope you are doing well.

Regards, Jill

Well, I didn't know the answer, so I e-mailed a couple of my doctors, and here is what Dr. Livingston (in Tucson) said:

Numbers in the hundreds are not uncommon for CA 27.29, usually much lower for CEA if it is elevated. But the absolute level of the tumor marker is not an indicator of how much disease someone has. What is important is whether it is elevated, and if so, whether it is going up or down.

Jill, I hope that helps.

Also, there is my recent experience with my tumor marker (the CEA), which is that it has been in the normal range for months, but I still have several active tumors. Three, actually. They showed up on the PET/CT.

Here's the post that Jill added her comment to:

Tumor Marker: Good (No, GREAT) News, for a Change

And my post about my most recent PET/CT:

The PET/CT Results: Disappointing

@ Jeanne Sather 2008.

The Patient From Hell

The full title is: "The Patient from Hell: How I Worked with My Doctors to Get the Best of Modern Medicine and How You Can Too."

A friend e-mailed, asking me what I thought of the book, because she didn't like it much.

I haven't read it yet, although I've heard of it, so I'm wondering:

Have you read this book, and, if so, what did you think of it?

Please add a comment below.

I'll be reading it myself, once I get through the stack of books on my coffee table, which include: "Face Food," "The Seattle Bungalow," "Vegetable Soups," and "A Lifetime of Secrets."

Buy the book:

The Patient From Hell

E-Mail Your Doctor?

First, the backstory. I wrote in a post on April 17, after seeing my oncologist, Dr. Lee:

What else? I gave Dr. Lee the posts I've written about cancer patients preferring to e-mail rather than call their doctors, complete with all the comments you folks had added, and told him this was a very polite request from me that they consider allowing patients to e-mail rather than call.

He was totally sweet about it, and said he would give it to the practice manager! So I will keep you posted on that.

A few days after that, I received this e-mail from the practice manager:

Hi Jeanne--

Dr. Lee met with me today and gave me the copies you hand carried to him at your appointment last Thursday. I also went online and checked out your blog and the comments that others have posted about the desire to communicate with their physicians via e-mail, rather than phone calls.

You are very well informed and seem to have many of the details as to why we cannot share PHI with you via unsecure networks at this time. I appreciate your comments and your request. I am also the Privacy & Compliance Liaison for our practice and we continue to explore options on how to achieve the required level of security to preserve patient confidentiality. We are in the process of redesigning our website right now. Please stay in touch with me, and I will keep your comments ( & those of others) in mind as we proceed down this path.

When you are in the office for your next appointment, please ask the front desk if i am here -- I would like to meet you and say hello!

Take care-

Denise
Denise Parkinson, CMPE
Practice Director
Puget Sound Cancer Centers

Pretty cool response, I thought. I like it when people take me seriously. Here is my reply:

Denise--thank you very much for getting back to me.

I do understand about patient privacy issues, and that it would require changes in your computer systems that might be rather expensive. And I appreciate your listening to the voices of cancer patients, many of them people like me with metastatic disease, who would find it so much easier to e-mail their doctors rather than call.

As you saw in the article about Group Health, the doctors seem to find it more efficient too, once it is in place.

I will definitely ask for you next time I'm in. I am really happy with the care that I'm getting at PSCC from Dr. Lee and the rest of the team. I was especially pleased to have a woman from the billing office come and find me and discuss my bill and a payment plan with me face-to-face. That was much appreciated.

Jeanne

Praise where praise is due.

Here are the posts and newspaper story I gave to Dr. Lee:

Do You E-mail Your Doctor?

E-mail Vs. Phone Tag

The doctor will e-mail you now

@ Jeanne Sather 2008.

A Report: The Wisdom of Patients

Teri, The Cheeky Librarian, sent me a link to a new report from the California HealthCare Foundation: The Wisdom of Patients: Health Care Meets Online Social Media.

Basically, the report confirms what those of us who have cancer and use the Web heavily--for blogging, online support groups, bulletin boards, listservs, and all the rest, already know: The Web, and the people we meet there, is a huge help to people managing chronic illnesses, like cancer.

Here's part of what it says:

Social media on the Internet are empowering, engaging, and educating health care consumers and providers. While consumers use social media -- including social networks, personal blogging, wikis, video-sharing, and other formats -- for emotional support, they also heavily rely on them to manage health conditions. ...

Using examples, this report describes how the Web is becoming a platform for convening people with shared concerns and creating health information that is more relevant to consumers. Social networks, ranging from MySpace to specific disease-oriented sites, are proliferating so rapidly that new services are already under development to help health consumers navigate through the networks.

The report details how innovative collaborations online are changing the way patients, providers, and researchers learn about therapeutic regimens and disease management. It examines the benefits and concerns regarding Health 2.0 and it also includes an extensive listing of health media resources.

To read more, or to download the full report:

The Wisdom of Patients: Health Care Meets Online Social Media

Over the past few days, I've been e-mailing back and forth with a man whose father-in-law has stage IV melanoma. I introduced him to Carver, who had stage III melanoma, and I've also been helping him to understand clinical trials and what the different phases mean.

He found my blog, and me, by doing a Web search.

@ Jeanne Sather 2008.

An Answer From ASCO, Sort Of

As I mentioned the other day, I didn't receive a grant to go to Chicago for the ASCO annual meeting as a patient advocate. Maybe I have a huge ego, but I really thought I wrote a good application and I would get a grant.

So that was disappointing. I still plan to go, but it's a lot of money for me, since my income is primarily from SS Disability. Anyway, for future reference, and because I was curious, I e-mailed and asked what kind of patient advocates they gave grants to, and how many they gave this year.

Here was my e-mail, to Jeannine M. Salamone, who is senior program manager, Communications & Patient Information, for ASCO, the American Society of Clinical Oncology:

Jeannine—Hi. I was wondering what kind of patient advocates you gave grants to—were they “professional” patient advocates like social workers and people who work full time for cancer-related nonprofits? Also, how many grants did you give this year?

She didn't answer my last question, about how many grants they gave, but here's her answer:

Dear Jeanne,

Please accept my apologies for not getting back to you sooner. We look at a lot of different factors when evaluating patient advocate scholarship applications. We look at financial need, timing of the application, involvement in research advocacy, and affiliation with non-profit cancer associations/organizations (either as staff or volunteer). Many scholarship recipients work as volunteers on SPOREs, IRBs, research panels, grant review panels, they review clinical trial consent forms, etc. This is the second year that we were able to provide patient advocate scholarships for our Annual Meeting and next year we hope to secure even more funding.

I look forward to seeing you in Chicago. Please be sure to utilize our Patient Advocate Lounge (room S402) and attend our Research Review Sessions for Patient Advocates, in the Patient Advocate Lounge on Saturday, May 31 and Sunday, June 1 from 5:15 to 6:30 PM. Once we receive your registration form, you will be placed on our patient advocate list and will receive more information about these Annual Meeting Patient Advocate Programs.

Best Regards,

Jeannine

If my reading of that is correct, they were leaning towards people involved in "research advocacy," and it's true that that is not a primary focus of mine.

I care less about the latest and greatest cancer treatment breakthroughs than I do about issues like doctor/patient communication, making decisions about treatment, and the whole "psychosocial" side of living with cancer, which includes support, coping, stress, and all of that.

I will be going to the meeting, and blogging about it each day that I am there. If you are a cancer patient who is also planning to go, please let me know. Maybe we can join forces while we're there.

@ Jeanne Sather 2008.

A Day on the Couch

I'm not used to staying up late, but with a houseguest here (and one who is one of my oldest friends, who I don't see often enough) I've been staying up late, going out to eat, and even drinking beer, which I very rarely do.

So today I had a small crash and canceled my appointments for the day and just stayed on the couch, napping, except for checking e-mail and taking care of all the animals.

The kittens are thriving. Just about old enough to try them with a dish, which will make my life with kittens easier--bottle-feeding four kittens takes almost half an hour. And they need to be fed about every three hours.

Intermission
Short break there while I went out with a friend of a friend to rescue my Corvair from the mechanic who thinks charging me $800 for something is "nickle and diming" me. So I (over)paid almost $2,000 for the repairs to date, and said no to the $800 repair that he was proposing on top of that, and my friend, who is a mechanic, is going to see if he can sort out the problem for me.

I took him to dinner to say thank you for his help with the car, and that was really fun. It's not often I meet an attractive, single guy these days. And he has a 10-year-old son, which I consider a bonus. I miss the kid years, much as I love the young men my sons have become.

A Disappointment
I received an e-mail from ASCO this afternoon, saying they were not going to give me a grant to go to the annual meeting in Chicago as a "patient advocate." That's a bummer.

I e-mailed her back asking her what kind of patient advocates they DID give money to, because I'm curious. I haven't received a reply yet, but when I do I'll post it. I thought I wrote a pretty good application, and I have a very long list of things that I've done in support of cancer patients, so, quite honestly, I thought I was a shoe-in for the grant.

But I'm still planning to go. Just have to find (under a rock, maybe) the $1,500 that it will probably cost for airfare, hotel, meals, and the registration fee for the meeting.

@ Jeanne Sather 2008.

The Gardening Report

Despite last weekend's very unusual weather--heavy rain followed by hail showers followed by snow!!!--my garden survived with very little damage.

A few tulips lost their petals, but that was about it. I went out in the hail to rescue my pea plants, which are in containers, so easily moved. The Chinese pea pods are a couple of inches tall now, the sweetpeas are just barely though the soil.

The only things I'm harvesting in my garden at this point are onions, garlic, and chives, all of which wintered over. There is nothing like a fresh green onion to wake up your taste buds. I have lots of them, interplanted with the peonies--don't ask, it just happened that way.

I have edamame plants that I started from seed that are now about six inches tall. They will go to my vegetable garden in the sky before they get tall enough to need to be staked. And I have greens--lettuce, spinach, and chard--that my friend Laurie started and gave to me (I gave her edamame plants in return).

Some of the seeds I tried to start haven't germinated, so need to try again. And yesterday I started some lettuce (seeds from the Amish store in Ohio) and some small French strawberries.

I still want to start carrots, but those have to go outside, they don't transplant well. And I need to get out and weed and fertilize (with chicken compost--I think that's the best) my strawberry patch--I'm seeing the first blooms, so it's time to do it. But it's been so cold! I haven't wanted to work outside for that long at a stretch.

Oh, and my nashi tree in blooming, so I need to get out there with a paint brush and pollinate, just in case the bees are busy elsewhere. I've been seeing bees this year, so we have some around.

Oh, and my lilac is budding, as are the bleeding hearts. The forget-me-nots are blooming. And the purple iris. I'll try to take a photo.

@ Jeanne Sather 2008.

Kitten Face

Do you know how hard it is to take a photo of a two and a half week old kitten? With a digital camera (between the time you click the shutter and the camera fires, the kitten has turned its head ...)?

It took two of us (you can't tell unless you look closely, but my friend is holding the kitten in a head lock--the kind of move that would be illegal in wrestling), and even so only one of the three shots I snapped was useable.

The foster kittens are growing, eating, sleeping, purring, and one of them is up walking on his legs. The other three are still doing the kitten crawl, with their fat little tummies on the ground.

Zoe, Dubutaunt's daughter, has naming rights. Except for one, which was named by the kids I teach Japanese to at First Place School. They named him Kuro-neko-chan, which means "little black cat." Very appropriate. If I have a favorite, it's that little guy. But really, my favorite is whichever one I'm holding at the time.

@ Jeanne Sather 2008.

One of Amorette's Babies Has Died

My dear friend and fellow cancer blogger (and bento artist) Amorette was about 18 weeks into her pregnancy with twin girls when she lost one of the babies.

Little Cécile was born on Sunday, April 13, after a premature delivery, Amorette writes on her blog. "She was too tiny to breathe on her own and died shortly after the cord was cut."

The funeral is today, and sadly Amorette cannot be there, because she is still in the hospital, fighting to save Cécile's identical twin sister, Madeleine. Her mother Pam is with her.

Please go to Amorette's blog to leave her a message, and keep that number 24 in mind--that's how many weeks old the baby needs to be to survive.

Go to Amorette's blog: Cécile

@ Jeanne Sather 2008.

ASCO and a Better Mood

Well, my strategy seems to be working.

I finished writing my application for a grant to go to the ASCO conference in Chicago as a patient advocate, and sent that off, and that improved my bad mood by quite a bit.

As did all the supportive comments on my blog and in e-mails. Thank you all.

So now I need to move on and get the guest room clean, walk my dog, and go to the post office. Just the ordinary things of life.

ASCO
That's the American Society of Clinical Oncology, and some 30,000 people, mostly oncologists, I imagine, will be gathering for this meeting in Chicago in late May and early June. The downtown hotels are already sold out, so if I go I will have to stay at an airport hotel. Apparently there will be free shuttle service.

Here are some of the sessions that I plan to attend:

** Communicating Prognosis: How Oncologists Can Be More Effective
(I know Tony Back, the moderator for this one, and have made presentations with him several times in the past, including one to medical students at the University of Washington Medical Center. Baby doctors, I call them.)

** Integrating the Humanistic and Scientific Aspects of Patient Care: The Perspective of Seasoned Surgical, Medical, Pediatric, and Radiation Oncologists

** Access to Investigational Drugs Off-Protocol: What Do We Owe Patients?

** Conflicts of Interest in Oncology: Understanding the Problems and Finding Solutions

** Recognition and Management of Medical Errors in Oncology

** Erythropoiesis-Stimulating Agents Use and Overuse: How Do Oncologists Negotiate Conflicting Demands?

Great titles, huh? (NOT.)

I was looking for more on clinical trials, like how to get cancer patients to enroll in clinical trials, because I have some thoughts on that, and also some sessions on psychosocial issues, which I didn't find at all. I want to suggest that someone should do a psychosocial trial about stress over medical bills and patient outcomes.

I'll take the info I have on that along with me to the conference, because I might meet someone who is interested, and of course I will have my laptop so I can blog about all of this.

Go to the ASCO site to read about the conference: ASCO