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Pumping Iron/Genetics, Part 2

ejourneys's picture

I am now halfway through my Taxol infusions. Six down (in addition to my four earlier Adriamycin/Cytoxan infusions), six to go.


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(The birds are based on photos I took of swallowtail kites in my neighborhood.)

This last infusion was also marked by my first IV of iron, which is better all around than the Fusion Plus pills I had been taking the week before. The pills can inflame the stomach and absorption is erratic, which can complicate the chemo. As my oncologist said, "In the vein, we know it's there," which is not guaranteed with the pills.

However, the iron IV also came with my first real taste of adverse reactions -- not my usual side effects, but something requiring quick action.

The iron was delivered via syringe to my port. Imagine this color:

delivered like this:

That latter picture is of Adriamycin, which I had also received via syringe during my four A/C infusions. The syringe for the iron was smaller, and its deeper red color prompted me to quip to the chemo nurse that I was getting an Adriamycin "mini me."

Prior to that infusion, the nurse had taken a special blood sample from me for BRCA gene analysis. It should be at the first lab at the time of this writing. More on that later.

Shortly after the iron infusion I was reading the consent form for the BRCA test when I felt strange around my port site. I can't describe it any better than that.

"I feel strange around my port site," I said. "Is that to be expected?"

The nurse said yes.

Then strange became vertigo. I told her I felt faint, then nauseous. Breathing became a challenge. She reclined my chair and either went or called for IV Benadryl, I forget which (probably called). Benadryl is one of my pre-meds for Taxol, but instead of an IV bag I received it as another syringe push. No slow drip this time.

Another nurse took my blood pressure, and I had the presence of mind to direct her away from my left arm (which wears a lymphedema alert band) and toward my right. My BP was up a bit, but was still normal for me and low for the general population: 100-aught-something over 50-something. (When my usual vitals were taken less than an hour earlier it had been 92 over 59 -- again, normal for me.)

Cramps had begun in my lower GI area; I reported that. The first chemo nurse asked me if I felt any better once the Benadryl had been delivered.

At first I said, "Not really." Then I said, "Marginally." I was doing my best to breathe, but taking a deep breath felt like drowning. I exhaled with soft, pained moans that I tried to control for the sake of the other patients.

The nurse said, "Your face looks better," which makes me believe I'd been sheet-white and was starting to get some color back. A few minutes later I felt much better and could continue reading the consent form. I also had to fill out a form for the lab.

My distress had not lasted long. I had received the iron push at 12:30 p.m., the Benadryl five minutes later, and (once my difficulties resolved) my other pre-meds 15 minutes after that. Then the Benadryl really kicked in and I napped. For the first time I had no idea when I was hooked up to the Taxol and was pleasantly surprised when I was told, "You're all done."

I hadn't felt frightened. I knew I was in good hands and I concentrated on getting through to the other side of all the discomfort.

The cancer center had been Grand Central Station that day. Almost all the waiting room chairs were occupied and I had to wait (though not long) for a chemo chair to become available. I was mildly amused to hear my oncologist's assistant call out whenever a chair was freed up; he struck me as a kind of chemo maître d'. We waited for our "tables" even though we all had reservations.

A popular establishment, alas. A few weeks ago the assistant had told me that they had experienced an influx of patients. On some days the waiting line for chemo extended down the hallway. This had been the first time I'd had to wait for a chair.

My adverse reaction to the iron was small potatoes compared to some. When I first walked in, one of my chemo neighbors and I both exclaimed, "I thought you had finished chemo!" Some weeks ago she had told me she had one infusion to go, and I hadn't seen her again. I figured her time slot had been moved.

She had been hospitalized instead. Her chemo schedule had been set back by three weeks.

I'll be getting another IV of iron at next week's infusion and then my levels will be re-measured. It shouldn't cause the reaction I had this last time, but I will remind the staff of what happened and we'll have the Benadryl ready, just in case.

I had assumed, mistakenly, that my low iron saturation percentage had been due to an iron transport problem. My oncologist explained (because I want to know how these things work) that my ferritin had been dropping. Ferritin is a protein that stores iron; it's basically an iron bank. Withdrawals from that bank are made for the production of things like hemoglobin, which lets my red blood cells carry oxygen to where it's needed.

I had assumed a transport problem because my other iron readings had been fine (though my hemoglobin has been low). Turns out they were fine because they've been draining down my ferritin, and we were getting close to breaking the bank.

I had also wondered why my total protein was low even though my albumin, globulin, and A/G ratio were still within normal range. Chemo drains it down; most patients lose protein during treatment. At this point I'm just a little low, so am still in pretty good shape, and I've increased my dietary protein intake.

Chemo also causes nosebleeds, and I've had two since my infusions began (with blood the consistency of water). Ever since the last one on August 25, I've been looking up my nose with a flashlight because I can still see fresh, bright blood back in my nasal passage. It hasn't bothered me, but it's out of the ordinary so I reported it.

It's not unusual for chemo. Blood vessels get irritated for various reasons. If they become a problem I'll be referred to an ear, nose, and throat specialist who will cauterize them. Fortunately my platelet count is still good. Keeping those passages moist should also help.

Genetics was the main reason my consult with the oncologist was moved up. (See my prior entry, "Genetics," for more on that.) I wanted to talk with him about BRCA testing, given my family history. If I have any BRCA mutations, my degree of risk for a second primary breast cancer, ovarian cancer, and pancreatic cancer would depend on which mutations had occurred. I would want to know those numbers and do a risk/benefit analysis before deciding how to proceed.

I handed him this info (abridged here):

Family history of HBOC [hereditary breast and ovarian cancer]; risk factors
1. Ashkenazi Jewish ancestry.
2. Paternal grandmother died of pancreatic cancer. [Pancreatic cancer is part of HBOC syndrome.]
3. Father's first cousin (daughter of his mother's sister) had ovarian cancer in 1985.
Note: I have not heard of any HBOC on my mother's side of the family; this is all on my father's side. Lack of relatives also means lack of potential data points. I am an only child and the last of my line.

In a case of perfect timing, The New York Times that night published Roni Caryn Rabin's article, "Study of Jewish Women Shows Link to Cancer Without Family History." I have a family history of cancer, but my insurer wants first-degree relatives with the disease. My only first-degree relatives had been my parents.

I was back at the cancer center the next day, not for an appointment but to give the article to the financial officer. She scanned in the article along with my family history info.

She told me that if the lab bills the insurer and the insurer rejects the claim, I can appeal the rejection using the article and my memo. The cancer center could then provide other materials to support my case. I asked, "What materials would I request?" She said, "Pathology reports," which I already have and had scanned into my computer. Good to know what I would need and that I already have it.

While there, I bumped into the nurse who had helped me in the chemo bay when I had my adverse reaction to the IV iron. She wanted to know how I was. I assured her I was fine (relatively speaking, with chemo). I told her that it was only during those few minutes the day before that things had gotten "a little dicey."

The cancer center was again filled to capacity, with no parking spaces available. Since I was there for only a short time, I was able to leave my car parked in the entrance drive, which was wide enough for others to pull through.

I'll save my ruminations on the BRCA testing and its implications for me for another entry. Results of the test should arrive in about ten days.

In the meantime, enough of my eyebrows are gone that I decided it was time for action:

I began to experience alopecia (hair loss) after my first A/C infusion and I knew that Taxol would advance if not finish the job. With that in mind, I ordered my eyebrow remedy from Zymetrical Novelties. I think it's about time to show it off at the cancer center. :-)

Comments

Pixie Dust's picture

EJ, seem as if you have done well on your first half of all your treatments. Hopefully your last half will go as well. I look at your post everyday and have not replied but this time I had too. You show so much support and encouragement in all of your post here. You surely have lifted my spirits. Keep posting and let me know how things are going.  Hugs, Pixie

ejourneys's picture

Glad you're enjoying the blog!  I had Taxol #7 on the 11th -- my body still reacts to the iron, but we were well prepared and nipped that reaction in the bud.  I plan to post an update in the next few days.  Gentle hugs back at'cha.

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