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

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.  

T-DM1 Update

I haven't written much about T-DM1 recently, given that I've been battling C. diff. for months and also I've been buried in the paperwork to get me on Medicaid, which is paying for my new digs at Fred Lind Manor.

Of course, virtually all of my monthly SS Disability payment goes to pay my share of the bill there, and Medicaid pays the rest.

Don't ask me to explain the whole Disability/Medicare/Medicaid process, because I don't understand it myself. Just glad that I made it through. The prescription drug/secondary insurance parts of this are a mystery still.

Back to T-DM1

I've been going over to the Seattle Cancer Care Alliance once every three weeks to get the T-DM1, and it is still working for me. My most recent tests and scans--PET, CT, MUGA, and tumor markers--show that the drug is holding my cancer in check. In remission, actually.

I haven't been keeping up with what is happening on the big issues re: access to T-DM1. If you know, please post a comment below.

There are some new T-DM1 clinical trials, one for women with metastatic HER2-positive breast cancer who have NOT been treated with other chemo drugs, and there are some Phase III trials. The problem there is that you have to agree to be randomized, so you may not get the T-DM1 at all. That's how research works.

The trial that I fought to be enrolled in here in Seattle is no longer accepting new patients. Again, the explanation is long and complicated and I'm not sure I could explain it accurately.

If you'd like to read about my experience with this drug, here is my first post on T-DM1, dated April 2010: Some Good News, for a Change ...

That's in the T-DM1 category. 

Abigail Alliance

One group that helped me a lot in my battle to get T-DM1 in Seattle was the Abigail Alliance. 

Frank Burroughs, one of the founders of that organization, sent me this e-mail recently:

 I wanted you to know that the Abigail Alliance continues to think of you.

In March our Abigail Alliance cofounder Steve Walker will be one of the speakers at the CalBio conference: http://www.biocom.org/event/CALBIO_2012. Among other things, Steve will talk about T-DM1 as one of the examples of FDA just getting it wrong.  He will be sharing the stage with former FDA Commissioner Andy  von Eschenbach.

@ Jeanne Sather 2012.  

Moving On

The snow is gone, and I will soon be gone as well: released from the rehab/skilled nursing place and into my assisted living apartment. 

That is scheduled to happen Friday. My friend Linda is coming to pick me up and take me to the drugstore, where my "discharge meds" should be waiting for us, and then to Fred Lind. 

The Wifi is working in my room at the rehab facility today (a miracle--I usually have to wander the building looking for a place where I can catch a strong enough signal), and I'm taking care of all sorts of things (confirming rides with friends and so on) and approving comments to my blog.

If you have e-mailed me and I haven't replied, I hope to get to that today. If I run out of steam, then tomorrow or Friday morning. Tomorrow I will be at SCCA to get my T-DM1 and see Dr. Julie Gralow. I'll get the results of Monday's scans, but I'm not anticipating bad news there. 

My biggest worry is keeping the C. diff. at bay. My tummy is OK right now, but I'm still on the vancomycin (an antibiotic). Each time I've finished a course of antibiotics recently, the nasty infection has returned within a couple of weeks. But, as I believe I mentioned the other day, I am seeing the infectious disease doctor on Monday, and I hope he has a plan.

I know that several of my cancer blogger friends and also readers of my blog have been dealing with this infection recently. I would like to put in a whole string of expletives here to express how I feel about what we all have gone through with the C. diff.--%%%****!!!###@@@!!! 

Does like look like swearing? Not really. Oh, well. 

A New Life

I will need to build a new life for myself in this new place. I don't expect it to be easy, but I think I'm facing it straight on (it helps a lot that my depression is gone). I'll be blogging about this as I move forward. As always, please don't give me advice or suggestions for making this change. If you want to leave comments about your experience during this kind of transition, please feel free.

I prefer: "This is how it was for me ..." Or, "This is my experience ..."

Rather than: "You should ..." Or similar comments. I know that I am exceptionally touchy about this, but it's not a part of my personality that is going to change, so please respect my wishes.

Otherwise, I can't write honestly about how I feel, and that is the whole point of this blog.

An OT staff person just came in, saying she has to do my progress report, and of course I'm still in my jammies. She went to get her computer to see if it will work in my room. Otherwise, I will have to get up and get cleaned up and dressed and go to the rehab room. I wasn't planning on doing that until after lunch, so we'll see.

 OK, that's over with, and lunch has arrived at my bedside, so I guess I will eat, then get dressed and cleaned up and head down to the rehab room to work with my PT guy. Gotta get stronger.

 

@ Jeanne Sather 2012. 

Snow Daze

Those of you who live in the Seattle area (or in the state, for that matter) don't need me to tell you about the snow and ice storms of the past week, and I understand we made the national news as well.

The snow disrupted some of my plans for last week, but not too many, and The Ranch (my skilled nursing facility) had power and heat. Short staffed, some days, and my favorite nurse ended up working two shifts back to back in order to cover for others who couldn't make it here. 

Physically, I'm still tired and weak, but definitely improving. The second bout of C. diff. is under control, but that's with me on vancomycin. I am worried about the long-term plan to keep it away, and I have an appt. with "my" infectious disease specialist on Monday the 30th. I'll stay on the vanco till then. 

Progress

Andrea ended up taking me over to Fred Lind Manor on Friday. We had a measuring tape and drew out the floor plan with measurements. I also had a list of the furniture that I want from the house.

It's a small studio (14' by 20', I believe). The "kitchen" is like a doll kitchen--a tiny sink, tiny fridge, and microwave. No counter space to speak of. 

Two closets, one quite large, and a reasonably sized bathroom with grab bars everywhere and an emergency cord. Only one window in the whole place. 

Yesterday, Saturday, Linda picked me up and took me to my house. This is always difficult for me, emotionally, but I needed to do it. I put post-a-notes with the word "take" on the pieces of furniture I want moved to Fred Lind, and we also boxed up sheets and towels, cleaning supplies and TP, and a couple of paper lamps to protect them during the move.

Tomorrow, Monday, a gang of six--Younger Son and five good friends--will be moving the furniture from the house and arranging it in my new home. The only thing that I'm worried about them having trouble with is my brass bed, which belonged to my great-grandmother, the Norwegian one. I've slept in that bed since I was 8 or 10, and I'm not ready to let it go. 

Plus, it has a new mattress.

While the move is going on, I will be at the Seattle Cancer Care Alliance to get scans required by the T-DM1 clinical trial. That will take three and a half to four hours, and yet another friend is driving me. 

Then back to The Ranch, where I have a "care conference" scheduled. I'm not asking YS or any friends to come to that with me, since we had one weeks ago before the return of the C. diff. I think I can handle it. At this meeting, the staff here evaluate my fitness to go to assisted living. 

Then, it takes them several days to do all the paperwork to spring me (don't ask--even I don't know why it takes so long). I'm hoping they release me on Friday ... we'll see.

The day before that, I have treatment at SCCA. With the blood draw, doctor's appt., and then treatment itself, that takes something like five hours. 

Oh, and then the following Monday, a week from tomorrow, I see the ID specialist in his office--which is all the way up in Edmonds--to talk about a plan to keep the C. diff. from coming back. I've had three bouts in four months. 

Cancer--it's not for sissies. 

Random notes:

I'm no longer wearing diapers.

The food here is beyond terrible, but at least I can eat small amounts.

I don't think Fred Lind has Wifi for residents, so there may be a gap in communication around the time of my move. I'm going to ask them to consider putting in a network ... there may well be other residents who want to get online. If not, I'm going to ask a techie friend to set one up for me.

Worried about the cost of that, but it's not the first thing on my list, so I've marked it to worry about later.

I have decided to continue with my blog. For awhile I thought I was done with it, but I don't think I am. I have a new life to make for myself, and the blog--and your support--will help me do that.

 

Jeanne Sather 2012.  

 

 

What's Smaller Than a Baby Step?

An inch, maybe.

As in, my progress toward escaping from this "skilled nursing facility" is inching along.

How much longer will I be here? No one can say. It's not because I need this level of care--I'm waiting to go to an assisted living apartment. But, since I am out of money and Medicare doesn't cover long-term care, I need to get approved for Medicaid, which will pay for assisted living.

A friend helped with the paperwork for the state, a couple of rounds of it, and now the only thing missing--I believe--is proof from Citi that my house is in foreclosure. We faxed some paperwork on this but it wasn't enough, so now I'm waiting for Kevin, my contact at Citi, to generate a letter which I can forward to the state ...

I "passed" the interview part of this process. That was with a social worker from DSHS (Dept. of Social and Health Services), so now I'm just waiting for the letter from Citi and then I'll wait for the financial approval. 

As you might imagine, I am depressed. And the days here are very long. 

For those of you who have asked, yes, I am still in the clinical trial, getting T-DM1. I go in for treatment tomorrow, in fact. 

This whole nightmare began on Thanksgiving, when my C. diff. came back with a vengeance. A friend drove me to the ER in the middle of the night, and I spent about a week in the hospital before they sent me over here. I'm "parked" here because I don't have anywhere to go--can't live alone, don't have anyone who can take me in or rent me a room.

Constant the Wonder Dog? He has a new home. The cat, too. And my house just sits empty with all my things there. Once I know where I will be living, my friends will help me move the things that I can take, and I'll get rid of the rest. 

Thanks for the comments that came in while I was too depressed to write. I'll try to do better, but I hate to post when I am in such a dark place, emotionally.

 

@ Jeanne Sather 2012. 

 

So What Is Wrong With Me?

Dr. Doug Lee discharged me from NW Hospital on October 26. He told me at the time that I did not have meningitis of any kind, but he did not know what was wrong with me.

He said that what had happened on Friday October 21--spiking a fever of 104, the confusion, the fact that I nearly died--could happen again at any time. But he did not know the cause. See: KIRO-7 story about me.

I was more than a little surprised that Dr. Lee was sending me home, but because I wanted to come home, I took the discharge papers. I was also surprised that Dr. Lee did not recommend a neurologist, since he did mention at one point that seeing a neurologist would be my next step.

However, I have been having trouble sleeping since I've been home. Younger Son has slept here for three or four nights since October 26 because I'm scared and because I asked him to stay.

But YS is very busy with school and needs to sleep at his apartment most nights in order to keep his own life on track. He is a senior at Seattle U who also sings in the choir. The choir is preparing for its Christmas concerts. Jesuit school = Christmas concert, not holiday concert. 

E-mail me if you would like more info about these concerts--they are wonderful. One is Friday, December 2, in the evening. That's the one I'm going to, and the other is the following Sunday afternoon. I don't have ticket prices or exact times yet. About $12 to $15 for tickets, I believe.

E-Mail to Dr. Julie Gralow, October 27

Subject: Questions about staying in the T-DM1 trial

Julie--I have a couple of serious questions about my ability to stay in the trial, and I hope you will get back to me as soon as possible, for my stress level if nothing else. (I shouldn't even say that, you are always good about getting back to me, but I am extremely stressed, not to mention in a fair amount of pain.)

Problem 1: I had surgery on my spine on Sept. 21 at NW Hospital. It was a vertebroplasty, because T-7, T-8, and--especially--T-9 were collapsing from earlier tumors and also from the radiation used to treat them. Three times, as I recall: Twice with conventional radiation, and once with cyberknife on T-9 because it had been treated previously with conventional radiation. 

The cyberknife treatment to T-9 was within the past two years--I can get the date if it is important and also give you details about the doctor and so on. Scans showed that T-9 was about half its previous height, and, as I said, I was in a lot of pain and could not straighten my spine.

I hope this surgery itself is not a problem.

Problem 2: I was hospitalized in quite dramatic style last Friday afternoon (passed out in the back of an ambulance with a fever of 104--I gave them my name and said "Northwest Hospital" before I passed out) and I was initially diagnosed with acute bacterial meningitis, which of course could have been caused either by the spine surgery or by all the spinal taps I've been having at Dr. Lee's recommendation.

I also had C. diff. when admitted. Now, I had not had a single bout of diarrhea before I left my house that day, but I suppose it could have come on that quickly.

My doctors are now telling me that I did not have meningitis, but they can't tell me what was wrong with me.

Does this jeopardize my enrollment in the trial in any way? I am scheduled to get treatment next week, Wednesday, I believe, and with your permission I will be there with bells on. Well, maybe I'll have someone come with me this time to ring the bells. I am still in pain in my spine and shaky from the near-death experience. Even after all these years with cancer, Julie, I wasn't ready.

Thank you. E-mail is the best way to reach me, especially because I can't find my cell phone charger. It's in the house, that's all I know. 

Actually, it was not in the house, so I expect that I left it at the hospital. When my attorney's staff person called to ask about the charger, the staff on the oncology floor, 4, apparently got very weird and would not say whether or not they had my charger. I decided I didn't want it back after all, since it would be contaminated with C. diff. I bought a new charger for about $30 on Tuesday, after my interview with KIRO-7 TV. 

October 28 E-mail to Dr. Julie Gralow and Dr. Xie Bin

Julie Gralow is the breast cancer medical oncologist who is in charge of my T-DM1 clinical trial. See: Meet Dr. Julie Gralow. Dr. Xie is a resident on her team. I like them both very much and also trust their opinions.

Here is part of the e-mail I sent them on the 28th of October:

I am still in fairly severe pain in the T-spine after the 9/21 surgery (a needle broke off in my spine and is still there--don't know if that is contributing to the pain or not), and a little pain in the L-spine from the most recent LP, which was within the past week. I have everything I need to handle the pain, plus lots of experience, of course.

My experience at NW Hospital this past few days was horrific, reminding me of research I've reported on that says don't be admitted to a hospital on the weekend if you can help it.

However, I have lots of support from friends, family, and various professionals. They are taking excellent care of me and I am emotionally strong. Physically--not bad. I took a short walk today to several neighbors' houses just to let them know I was home and to get some fresh air. I will be able to come in for treatment next week without a doubt, unless I am hit by the proverbial bus.

Thank you both. I'm nervous about being bumped from the trial, but it sounds like that may not happen. I'm still completely cancer-free and have some new biopsy results to prove it (from the three bones in my T-spine that were treated with vertebroplasty). 

October 28, Dr. Julie Gralow's Reply 

Hi Jeanne - I just heard about your admission from Kara and am sorry to hear about it.

From your e-mail you sound like you're thinking OK again. I've cc'ed Bin Xie to help us sort out what's going on as I'm in Vienna until Sunday night. Did you have another MRI of the brain and an LP (spinal tap?). We'll try to keep you on T-DM1 if it seems like the right thing for you. Julie

October 28 E-mail From Dr. Xie Bin 

Hi, Jeanne,

I am sorry to hear about your admission to NW hospital. Do you mind I call Dr.Yee [Dr. Lee] to get more information about ? meningitis and how it was treated? I understand you prefer to communicate by email; I'll be very happy to speak to you if you want. My number is 206-000-0000.

October 28 E-mail to Dr. Xie Bin 

Please do. It is Dr. Doug Lee. 206-000-0000.

I should also point out there is some disagreement among my doctors. Dr. Lee will tell you that I did not have meningitis at all, while his partner, Dr. Sam Tolman, at the same number, diagnosed me with acute bacterial meningitis last Friday and treated me with antibiotics. I improved almost immediately. (Dr. Lee was out of the office at the time I was taken to the ER.) 

... [I asked Dr. Xie about his Halloween costume] ... By popular demand, I will be repeating last year's costume, The Witch in the Wheelchair: Witch in the Wheelchair

October 28 E-mail From Dr. Xie Bin 

I reviewed the records (discharge summary from Dr. Lee) and spoke with Dr. Lee this afternoon.

The etiology of your mental status change is not entirely clear. The CSF showed WBC of 1, glucose of 58 on the day of admission does not support bacterial infection. We expect WBC in CSF much higher.

Viral mengitis is a possilility that got better on its own, although we do not have viral panel on CSF.

Fever from c diff infection that causes mental status change is also a stretch.

Foreign body from the vertebraplasty unlikely.

ID at NW Dr. Ehni was consulted. It is not meningeal carcinomatosis (negative MRI imaging and cytology from 4 LPs).

Jeanne did receive 5 days of ceftriaxone.

Dr. Lee plans to do MRI of brain next Thurs when he sees you (last one was about one month ago).

Jeanne, I do not think we clearly understand what caused your mental status change. The important thing is that you are better now. I do not think that this is caused by TDM-1 and there is no obvious contraindication for you to continue TDM-1 trial next Wed.

I hope you'll enjoy Holloween with your son and friends. I am not planning on costume, but my 5 yo son will be Darth Vader.

Best wishes,

Bin

T-DM1 Treatment November 3

This was my third treatment in Seattle and was completely uneventful except that I reported elder abuse by Older Son, which has continue for years.

Dr. Gralow referred me to neurologist, Marc Chamberlain on November 3, and that referral went into the computer that same day,

Today, November 4, Trying to Make an Appointment with Dr. Chamberlain

I called Dr. Chamberlain's office at about 10 a.m. to try to make an urgent appointment to see him.  

First, I got caught in voice mail hell, which explained all the things that needed to be faxed to the Neurology Dept. (this is at the UWMC). 

Since I knew he already had the referral from Dr. Gralow, and I knew I would call or e-mail Dr. Lee's office today to ask that the records from my most recent hospitalization be faxed over, I didn't think that Button 2 on Dr. C's voice mail hell applied to me. Plus, this is an emergency. 

I went back to the receptionist and explained my situation. T woman who answered the phone--I didn't catch her name--listened to my situation very patiently, and said I should speak with Genese (I'm not sure I spelled this correctly) Davis.

The nice woman transferred me to Ms. Davis's line. A recording said Ms. Davis was on the phone, and gave me the number to have her paged.

That was at 11:45.

She won't recognize my name unless she checks the computer, and then she will see she has a referral from Dr. Julie Gralow for me to see Dr. Chamberlain.

Let's see how long it takes her to return my page. So far, 30 minutes. I'm going to call her again.

Some voice mail hell at the neurology clinic, then I paged her a second time. I asked the paging operator if there was anything wrong with the paging system today, and he said not.

It is now 1:01 p.m., and no reply to my pages to Ms. Davis.

I sent an e-mail to Dr. Lee asking that his office fax my records from my most recent hospitalization (I call it "the meningitis hospitalization") to Dr. Chamberlain, because I know he needs those records in addition to my referral, which is already in the computer.

At 1:10 p.m., I receive a cCall from Dr. Lee's office to let me know that Stephanie, in that office, was in the middle of faxing the records I asked for to Dr. Chamberlain's office.

Still no answer to my page.

It is now 2:17, and I have been working on making this appointment since 10 a.m., including writing this post so that I would have all the info together for Ms. Davis or the doctor himself when I spoke to them.

I think it's time to push this live, and then ask my attorneys to make a phone call.

 

@ Jeanne Sather 2011. 

T-DM1: I'm Not the Only One

I did some checking around, and other women are getting T-DM1 closer to home. Some. 

Some are still stuck in the paperwork and the in-fighting between various organizations. That makes me sad. I wish it made me mad because then I would muscle up and do something about it.

For now, my job is to report what I know. 

One: A couple more patients have transferred to Seattle. I hope I get to meet them. 

Two: Phil and Lorraine (Lorraine is the patient, Phil is the advocate) have not yet been successful in getting Lorraine's treatment switched from Virginia to Boston, where they live. 

Phil writes: "We are currently stuck in a stand-off between Genentech and MGH's IRB. [I assume MGH is their local hospital--Jeanne.] Each accuses the other. We are going to have to go back to Virginia at least one more time. 

"We have advocates trying to help. Our spirits remain strong, and the drug continues to work."

Here's an earlier post I wrote on them: Traveling for T-DM1

In the Boston Globe: Limits on Test Drugs Add to Patients' Ordeals

Jeanne Sather 2011. 

T-DM1: Duped?

 

I had my second (Seattle) dose of T-DM1 yesterday, but I couldn't feel good about it.

I do not know one single woman, other than myself, who benefitted from that battle. I'm not even sure that the information I've posted to my blog is correct, and no one else seems to know. Here's the best I can do: The Right Ending--T-DM1 Drama

The idea, I thought, was that Genentech was supposed to allow woman like me who were enrolled in its Phase II trials of T-DM1 (at only 12 sites, nationwide) to get the drug closer to home. So I was having to travel to Southern California, and, after lots of yelling and screaming, I was able to get it in Seattle. 

I'm going to stop here, and give anyone who did manage to enroll in a clinical trial closer to home to get in touch with me. 

As a friend of mine, also a journalist, wrote: "It seems [that everyone] was duped about the expanded/extended access, and this may have given false hope to other women who want the benefits of the T-DM1."

Ouch!

© Jeanne Sather 2011. 

 

The Seattle Times Article: 'Never Out of the Woods'

One of the more chronically overused cliches in print and broadcast news is "ironically." 

After earning my master's degree in journalism at the University of California at Berkeley, I never use it, in any of its forms. 

Or not until now.

Plenty more cliches come to mind here, including, "There's always a first time." Feel free to add appropriate cliches in the comments box below, but please don't point out that I don't have the little mark over the "e" in "cliche," unless you'd like to teach me the html for it.

Back on Topic

The word "ironic" springs to mind because the page one story about the T-Drug and me includes the most beautiful, glowing photos of me--with Constant, of course, and one more with Ella, a young friend--taken in recent history. 

The story was published on September 21, two days after I was admitted to NW Hospital (now part of the University of Washington Medical Center). 

I didn't leave the hospital for 13 or 14 days, depending on how you count. My doctor didn't want me to leave at all, not really, he wanted to send me directly to an in-patient rehab center. More on that later. 

Obviously, I refused. And I played a joke on him just before my release that is too good not to share, but that also needs to wait for another post. I need to move on to Citi and saving my house from foreclosure. 

The greatest irony, to my mind, is in the final two paragraphs of Carol Ostrom's story:

Sather knows her health still is precarious and can change day to day.

"I'm never out of the woods," she said. Yet, her first T-DM1 treatment in Seattle buoyed her with energy last week. "I'm in remission on this drug, the first time in years," she said. "I'm in this bubble of happiness."

See: Seattle Times  Breast cancer blogger gets drugs closer to patients

@ Jeanne Sather 2011.