Radiation: One Problem I Forgot to Mention

One question I brought up with Dr. Lee yesterday that I forgot to write about: since my latest round of radiation therapy, my body temperature has been LOW, between 96 and 97, and I've been having chills.

When I first mentioned this to Dr. Lee on the phone a week ago, he was more worried about my running a fever as the result of getting an infection in the wake of the latest round of radiation--possibly one I wouldn't be able to shake off.

So he told me to take my temperature every day, and to call him if it went up.

I sent Younger Son to the drugstore to buy me a new thermometer, because I thought mine might be broken, it was reading so low.

But no, between 96 and 97, always (98.6 is normal). It was 96 when I saw Dr. Lee on Friday, and at first the nurse kind of shrugged it off, telling me that her own temperature was often low. But this was new for me, and it didn't feel right, so I persisted.

New information: Dr. Lee said something that I had never even considered, and that my radiation oncologist had never mentioned as a possible side effect: my thyroid may have gotten "scatter" radiation exposure during this latest series of treatments.

Oh, boy. So he had my blood drawn for a thyroid test. Call in five days for results.

I do not yet know what this means. I don't know if the thyroid can repair itself, if it is indeed damaged, or if this is yet another thing that I will have to live with.

To be fair to my radiation oncologist, Dr. Eulau, I don't expect my doctors to mention every possible side effect before they treat me. I do understand that these treatments come with side effects and after effects, sometimes very serious ones.

I will e-mail Dr. Eulau about this, though, although I believe he is on vacation.

This brings up another topic that I will be blogging about in the new year:

A new oncology specialty. We need specialists in the care of cancer patients and former cancer patients who are knowledgeable about the side effects and after effects of cancer treatment.

I'm hearing this more and more from the people who read my blog, because many of us have been in cancer treatment for a long time, and we have odd side effects that no one seems to know much about, or, sadly, to take seriously, in some cases. And that rankles, of course.

If you know of a doctor or cancer center that is doing work in this area, please write and let me know. Thanks.

@ Jeanne Sather 2007.

Comments

[Amorette]

From what I've experienced personally and what I've studied, the effects upon a radiated thyroid are this:

Low-dose is bad. You'll have to watch for thyroid cancer and yoink that sucker out of there if you develop a node or have a questionable biopsy.

High-dose also means you'll have to monitor your thyroid closely, but it's more likely to just kill off/incapacitate the entire thing. Mine's more or less a wash, and Mom's is completely dead after being radiated twice (the Hodgkin's and the later sarcoma, she didn't have radiation for the breast CA or the other ones). Both of us are on fairly high doses of Synthroid to keep things going, and you might end up having to do the same.

My temp's run low as long as I can remember- probably because my thyroid's been damaged for as long as I can remember, lol :) Mom's runs low, too...we hang around 96.6, 97. If it's 98.6, we know we're fevered.

They might want to start up the aspiration biopsies on you, which isn't really uncommon. Under optimal conditions (that is, not in your tongue like mine ;), it's not done under any anesthesia. Needle goes in, quick bee-sting pain, needle comes out. They check the cells and as long as nothing looks questionable, you're good.

The only post-radiation thyroid CA I've seen personally was in a nurse who received radiation to the face and neck in the 50s as a treatment for acne. Then again, that was low-dose.

Hope my "reporting from the front" is some sort of help, there. I'm going to guess you were treated with a fairly high-dose, for bone mets?

[jeanne]

Amorette--thanks for the info. I am assuming it was "high dose," although they didn't call it that. I have the printout of the dosage around here somewhere, because I try to stick things like that in my file.

[Dee]

Hi again,
This is Dee again.

I want to lend my support to your request for studies that look at odd side effects and after effects of cancer treatments! As I mentioned yesterday, I am refusing the chemo suggested by my oncologist for this latest bout of cancer. (It was suggested because rather than it being a small tumor (3mm) as we thought after my biopsy in October, there were "tendrils" of breast cancer throughout the breast tissue, indicating that this "new" cancer may have been there for several years. He's suggested carboplatin, taxol (or taxotere), then Hercpetin, and then ovary removal + aromatase inhibitors. I'm refusing the chemo (carboplatin and taxol) because I had AC five years ago and I swear that I'm still recovering from the effects of that! I was diagnosed with adrenal fatigue last June, after completely crashing with fatigue in May. For about 10 days, even after sleeping 8-9 hours, I woke up feeling hung over (although I'd had no alcohol), with heavy eyes and no energy. Adrenal fatigue is associated with chronic stress over a period of years. On top of my original breast cancer diagnosis and treatment, I'd also dealt with stress from my job (as an academic, it's a "publish or perish" scenario), stress in a new relationship, and stress getting my very bright Asperger's son (now 7) settled into a school where he could function, and oh, yeah, a separation and divorce in that time period. Now, I know can't completely blame the cancer treatments for the fatigue, but I'm sure that the chemicals (including tamoxifen) contributed to my lack of energy in those intervening five years.

In addition, during my recent double mastectomy, I was given so many drugs while in the hospital. I think I was given a few anti-nausea drugs, the anesthesia, an antibiotic, then I was allowed to self-administer morphine, and zofran. After throwing up the second night after surgery (and waking up in a sweat and itching like mad from the morphine!), they switched me to Phenergen, and gave me another drug "to quiet my stomach acids". When I said that I wanted to stop the morphine (because I still felt nauseous), my surgeon put me on Toredal. Finally, I said no more drugs!! I only accepted the antibiotic and then Tylenol for the pain and my low-grade headache (which I think I had from caffeine withdrawals). I mention all of this because I think doctors are WAY too quick to prescribe drugs, one on top of another. I think within a 24 hour period, I had as many as 10 different meds. There was no thought about how all of these different meds may mix in my body and their side effects. It was me who had to insist that it all stop in order to figure out how to stop being nauseous all the time! It pissed me off - I ranted about it in my blog post-surgery (http://deeupdates.blogspot.com/). I would really like doctors to think about how these cocktails of meds affect people before continuing to prescribe new ones - I felt like they would give me one drug, then one to counteract the first one and then a third one to counteract the side effects of the second one! Etc. etc.

Also, I remember after my fourth treatment of AC, I decided to take the anti-nausea drug Kytril for a few days (instead of just one) as I was nauseous for about a week after treatment three. Well, about 55 hours after treatment four, I started having these really weird cramps in my abdomen. I felt that my stomach (or something!) was cramping into my rib cage - after every cramp, it contracted further up. I called my oncologist and he couldn't say for certain if it was from the AC or the Kytril, as he'd never heard of this side effect before. Anyway, I stopped taking Kytril as the cramping lasted two hours and he prescribed Phenergan instead. It scared the crap out of me. This weird cramping wasn't on the side effect list.

Another weird side effect - ever since AC, I have had these weird ridges on my fingernails.

I will keep my fingers crossed for you with regard to the thyroid. And, congratulations on your low CEA counts! I am very happy for you! Again, I want to thank you for your blog . . . I very much hope that my breast cancer has not metastasized, but your spirit and energy and strength (and Amorette's, too) have shown me that a metastasis is not necessarily a death sentence.

And, oh yeah, the article that I plan to write on boob jokes will come out in an academic journal (like Western Folklore), not on a website. But I still want to post some of those jokes in my blog . . . I'm sure you've heard this one:

What did one saggy boob say to the other one?
If we don't get support soon, people will think we're nuts!!
Take care,
Dee

[jeanne]

Thanks, Dee. I also feel like a one-woman clinical trial for all the drugs I'm on. I am always trying to get rid of ones that I don't really need ... and I often encounter resistence from doctors. One of my former doctors said, "But it won't hurt you," when I wanted to give up my blood pressure meds because my BP was fine. That's only one reason that she's not still my doctor.

I'm going to take the whole batch to Dr. L next week and go over each one and the dose and see if there are any I can do without. I am almost done with the heavy duty pain meds for my fractures, which feels good, although I had to take one again last night in order to sleep comfortably.

Boob jokes in an academic pub? I love it.

[Amorette]

one-woman clinical trial...lol

been there!