Sunday, August 27, 2000

I believe that anemia has set in. I slept right through 10:30 am this morning. We missed church. Rick's philosophy is to let sleeping baldies lie. He figures if I'm sleeping that hard, I must need it. I don't know if I could have made it anyway. I am dizzy no matter what position I'm in. The good news is that my mouth feels better today. I decided to start swishing with the Biotene mouthwash more frequently. It seems like it is helping.

Well, I laid down this afternoon for just an hour nap, and got up 3 hours later. Still very tired and dizzy. My mouth is more sore this evening than it was this morning. Tonight I take my last neupogen shot, Tuesday I have a blood draw, and Thursday I meet with the oncologist.
posted by Karen Weber Sunday, August 27, 2000

Tuesday, August 29, 2000

Went in this morning to have blood drawn. When the nurse is done taking the blood out through my port, she flushes it with a large amount of saline. This always makes me dizzy, but this morning, it really hit me hard. It's been almost 2 hours and I'm still trying to get my brain back.

I've been reading a lot about Taxol these past couple weeks since that is the next thing I'm supposed to get. I can't find any indication that Taxol has been approved by the FDA for use in node-negative breast cancer (like mine), so today I called the Cancer Information Service (1-800-4CANCER) to ask. These are the great folks that helped me find the right place to get a second opinion on my tumor's pathology. They were also not able to find anything about Taxol's use in node-negative BC, but they are going to call me back after doing more checking.

I know that my oncologist is concerned about my cancer being particularly aggressive because of the her2/neu results, so it's possible he is thinking that it has already micrometastasized. He hasn't spoken to me about this, however. I have several pages of questions to discuss with him on Thursday and this is one of them.

OK, this is the official word on Taxol from the FDA's listing of new drug approvals for the treatment of cancer: "Taxol (paclitaxel) injection, from Bristol-Myers Squibb, received additional approval on October 25, 1999 for adjuvant treatment of node-positive breast cancer administered sequentially to standard doxorubicin-containing combination chemotherapy. In the clinical trial, there was an overall favorable effect on disease-free and overall survival in the total population of patients with receptor-positive and receptor-negative tumors, but the benefit has been specifically demonstrated by available data (median follow up 30 months) only in the patients with estrogen and progesterone receptor negative tumors." So it doesn't appear that Taxol is approved for use with my tumor. The CIS asked if perhaps I was going to be part of a clinical study. There aren't any studies recruiting for the use of Taxol in stage 1 node-negative breast cancer. I'm trying hard not to get too excited, but this may mean that I am done with chemotherapy.

Before I meet with the oncologist Thursday, I'm going to call Impath, the lab that tested my tumor tissue for estrogen / progesterone receptors, her2/neu status, DNA index, ploidy, and S phase. I never noticed this before, but at the bottom of their report is a line that reads: "Metastatic breast tumor receives no report of prognostic groupings. However ranges appear on the reverse of this report." I'm not at all sure why they called this a metastatic breast tumor. They analyzed only tissue from the tumor, no lymph nodes or tissue from anywhere else. I think it's a typo, but it may be why my oncologist is planning to use Taxol. So I'm going to follow up with them and see if I can find out why the report says that. I hope I can reach someone about it tomorrow.

Seconds after that last post, I noticed something even weirder on this report from Impath. They claim the body site the tissue they ran their tests on was taken from the left axilla (armpit). I cannot imagine why the local pathologist, having found the nodes negative, would have sent axillary tissue for analysis instead of tissue from the actual breast tumor. It doesn't make any sense. So now I'll have to call her tomorrow as well. This is a mess!
posted by Karen Weber Tuesday, August 29, 2000

Wednesday, August 30, 2000

I just spoke with the head of pathology at the hospital where I had my surgery. He reviewed the original surgical pathology report and the Impath report with the pathologist who did the surgical report. Then he called with the good news! The Impath report is completely wrong about a) where the tissue came from (it came from the primary tumor, not the axilla) and b) about the tumor being metastatic. He believes the source of confusion is due to the tumor type. A medullary tumor is characterized by the presence of lymphatic tissue in the primary tumor. Mine is not pure medullary, but it has strong medullary features, especially this one. They did not send the surgical pathology report showing this along with the tissue samples to Impath, and he believes this is the source of confusion. He was very firm: they tested breast tissue, not axillary tissue, and my tumor is not metastatic! Of course, this is what we have been believing all along, but now it really could make a difference in my treatment course if this report is what my oncologist is basing his treatment recommendations on. I had a hard time with this local pathology department initially, but they really came through for me on this. The doctor I spoke to this morning took my call, he understood the urgency, and he got back to me with the information I needed in less than half an hour. Wow!

I've left a message for the pathologist at Impath as well. I'm not so sure they are going to be responsive. The receptionist was very helpful, taking my message, until she realized that I was a patient and not calling from a doctor's office. Then she demanded my doctor's phone number instead of mine. What a difference between Impath and the local department! That's fine. If they call the oncologist today, he won't know why they are calling. He can call me to find out, or refer them to me, or wait until we meet tomorrow. As far as I'm concerned, I already know what I need to know. He can verify it himself tomorrow if necessary. p>I haven't heard back from the CIS about Taxol. I believe, however, that the FDA page is up-to-date. I will call them today to verify.

OK, just got off the phone with the FDA, and if that wasn't an exercise in futility I don't know what is. Can you believe that they don't have this information computerized? All those drugs they are regulating and if you call for information, they have to shuffle through stacks of papers by hand! To make a very long phone call into a short story, they couldn't tell me anything. Ha! Your tax dollars at work! They did give me a number at the NIH, which, when I called it, turned out to be to the CIS. Since I called them already yesterday and am waiting for a call back, I just hung up.

The gal at the FDA did say that even if it's not approved for stage I node negative BC, the doctor could use it "off label". Of course, then the insurance company might decide they don't want to pay for it. Oy, what a mess this could be. Still waiting to hear back from Impath.

Immortality Protein May Offer Cancer Vaccine - one drug to treat all cancers? Still in animal trials, but very promising.

Just got a call from the pathologist at Impath. What a difference from the person who took the message. He said I can call him anytime. We spoke about the problems with the report, and he admitted the error. He said that the requisition that accompanied the report from the local path department says the tissue was from the axilla, but he read the original path report and agreed with me that it seemed to indicate it was from the breast. So he got out the tissue and looked at it while I was on the phone. Yep, it's breast tissue, not axillary. So he agrees the report is in error. He's calling the local path lab and he's faxing me an amended report today. He was so nice and so helpful. I am feeling optimistic.

I'm writing my Funnies newsletters for next week, and I have my soap on as background noise. I wasn't paying much attention, then it dawned on me that the guy singing was singing some great lyrics: "No, no, no, no, I won't surrender. I beat trouble by looking it in the eye." What great lyrics! I have got to get a copy of this song.
posted by Karen Weber Wednesday, August 30, 2000

Thursday, August 31, 2000

I'm back from the oncologist's office. I got so dizzy and out of breath driving there I had to pull over twice. I thought I was going to faint walking into the office. Then the oncologist told me that he thinks it is psychosomatic. If I'd had the energy, I would have popped him a good one. But I didn't so I cried instead. He also said there's no reason for my earache, the sore lymph nodes in my neck, or the fatigue. I am so glad life is that easy for him. Rick came in late and couldn't figure out why I was crying. We didn't get a chance to talk after the appointment because he had to go to a meeting and I sat down in the chemo room and gabbed with a new patient and an old buddy.

At any rate, once we got past that, we discussed the important stuff. He put my mind to ease about the family history of heart trouble not having any bearing on the kind of heart problems that the chemo and radiation can cause. My total cumulative dose of AC was below the lowest level at which anyone has been known to have heart failure, so that was really reassuring. He also said that my MUGA scan before I started chemo was absolutely normal, so once I can start exercising without fainting, I'm all over that. He did say that because it is the left breast I should ask some hard questions about radiation - how much scattering there will be, how much of the heart will be in the portal, how much absolute benefit to survival there will be. The latest version of the physician's PDQ (standards of care) now contains warnings that the risks to some patients may outweigh the benefits of radiation. So I will ask the hard questions. The oncologist told me that stopping chemo today, not doing radiation, and taking tamoxifen for at least 5 years puts my rate of disease-free survival at 94-95%. Radiation would cut the chances of local recurrence, but it doesn't do anything to cut the chances of micrometastasis and distant recurrence. So we are going to have to think long and hard about whether it's worth it. We did decided that continuing on with the Taxol is not worth it. There are some very, very preliminary studies showing that Taxol may hold some benefit in node negative stage I breast cancer. The data is very preliminary, isn't fully analyzed, and the study design hasn't been peer reviewed. It shows a 24% increase in short term survival. In my case, that's a real benefit to me of about 1% and the long term implications are still to be determined. He said that if I had skated through the AC, he'd want me to do it. He likes to be very aggressive with a person my age. But he said because the AC was so hard on me and because the Taxol isn't proven yet and would offer such a small advantage, he wasn't recommending that we continue. So I came away with a script for tamoxifen and permission to take 3 weeks off before contacting the radiation oncologist. As soon as I catch my breath, I will do a little jig!
posted by Karen Weber Thursday, August 31, 2000

Friday, September 1, 2000

The dizziness and shortness of breath is worse today. I literally got one leg out of bed and my head barely off the pillow this morning when the room started spinning. I tried to sit up anyway and I had to hang on to the bed to keep from tipping over to one side. My eyes were going nuts and couldn't focus. I propped myself up on some pillows and tried to read the newspaper. Eventually the spinning settled down, thanks to some help from my good boy cat, Otello. About half an hour later, I was able to get up slowly. We've been planning to go up to my folks house in the mountains this weekend and I was going to stay over for the week, but I haven't been able to sit up long enough to get the work I need to get done if I'm going to be gone that long. Rick checked on me by ICQ and offered to drive me to see my GP. I really didn't want to go and hear another doctor tell me I was just being psychosomatic and getting myself worked up over nothing, but my GP hasn't ever done that to me so I agreed. He listened to what I told him, did a couple simple hands on tests, and made a diagnosis: labyrinthitis. Not much they can do for it because most cases are viral. It just resolves itself in 2-4 weeks. He gave me a shot of medrol to decrease the swelling and some very low dose valium because it calms down the dizziness for some people. My GP tells me he doubts this was related to the chemo, but you know, last year I never even had a cold. The chemo may not have directly caused this, but it sure has made a wreck of my body.

We also filled my prescription for tamoxifen today. I can start that right away. Major symptom: increased hot flashes. Rare: blood clots, generally in people that have previously had trouble with blood clots. Anecdotal: weight gain. I'm anxious to feel well enough to start some mild exercise -- walking, swimming when the pool is in. I'm disappointed about the latest problem, but hoping that perhaps the medrol and valium will help enough that I can at least walk short distances without feeling like I'm going to fall over.

I've been reading about labyrinthitis at some of the reputable medical web sites. Interestingly enough, risk factors include stress, fatigue, anemia, and use of toxic drugs. Gosh! I think this is related to the chemo, at least peripherally, no matter what anyone says.
posted by Karen Weber Friday, September 1, 2000

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