The Breast Cancer Diaries, vol. 2, issue 10

March Comes in Like a Dermatologist and Goes Out Like a Genetic Counselor

Today, I went back to see Dr. Singh because the radiation burns, which seemed as though they had been healing prior to the Tamoxifen, have returned to nearly the same raw, painful state I was in when I saw him the first time back in January, but without the blisters. I'd been trying to use the steroid cream, but it seemed to be making it worse, so I stopped. In fact, even the most harmless stuff (Vaseline) seemed to be aggravating it. On Saturday and Sunday, the only thing I put on that area of skin was corn starch baby powder, just to keep it from chafing while walking/moving around. 

 

Using a large magnifying loupe (as is typical with his examinations), Dr. Singh took a look at all the affected tissue under the left breast. He said that the skin cells are not becoming normal cells. I'm not exactly sure what that means, but he said the area isn't healing properly from the radiation. 

 

He prescribed a stronger steroid ointment, Clobetasol, and put me back on the Mupirocin, which is burning already as I write this. Dr. Singh said one week on, next week off for the steroid for a month, and then we'll check in again. 

 

Aside from the physical pain, I'm frustrated and feel like I can't move forward with this part of my life because that area just won't heal. I knew it would be a slog, but I didn't expect that it would get painful, swollen, and itchy all over again, especially after seeing so much improvement. It's upsetting and disappointing. 

 

Thankfully, the headaches are much improved. Saturday was the first day in 8 that I didn't have a headache (have had 1 since). On the other side of that coin, the neurologist doubled the dose of Ubrelvy and increased the quantity (they get doled out in sets of 10). My insurance promptly placed that prescription on hold and required a preapproval for it. There's paperwork trading hands and hopefully that will be cleared up soon because I only have one dose left. I have a telemedicine appointment with the neuro on Thursday to talk through other options. 

 

Speaking of other options, my March calendar is pretty full of doctor calls and visits having to do with the cancer recurrence prevention plan. I'm trying to be sanguine about the situation, but it's a bit overwhelming to have that many visits/calls already mapped out. 

 

During the period from September through January, my life was this runaway train of procedures, surgery, radiation, and side effects while living at a survival-first pace. Now that things have slowed for a bit so that I can heal, I'm catching up with the emotional piece of being a person being treated for cancer. 

 

Something that's become clear from talks with friends recently is that I've been feeling two-dimensional. My conversations tend to focus on this damn cancer and its damnable treatments (although more often than not, you will hear me say "F'ing cancer!" but it's not "f'ing"). 

 

I feel like I need to yell at the top of my lungs, "I am more than my cancer!"

 

When I recently had the experience of mentoring Rutgers archives students, I felt more like myself than I have in a good while. The person I am, this multifaceted human, is still here. And, I'm glad that the next breast cancer support group meeting is tomorrow evening. 

 

As always, I'm grateful for your kindness, love, prayers, good vibes, magical thinking, and righteous indignation on my behalf. For those who have contributed wool, I thank you greatly for giving my hands somthing to do while I await doctors, sit in meetings, and watch TV (I'm nearly done with a project I've been working on for a bit and will post photos when it's complete). I especially enjoy the very silly emails, private messages, masked walks, and long conversations that cover a hundred different topics (other than cancer). 

 

Don't forget to get screened. Early detection is key.

The Breast Cancer Diaries, vol. 2, issue 9

 The Faucet of Side Effects

Up until Thursday (4 days ago), I thought I might actually experience a miracle and sail through taking Tamoxifen. There had only been minor hot flashes and 2 days of feeling a bit nervy and tremor-y. No such luck.

On Thursday afternoon, it was as if some force had turned the faucet of side effects on full blast because they came on all at once. The worst have been the migraines. Since that time, I've had one migraine after another, like a non-stop vise on my head.

Back in August, I began working with a neurologist, Dr. Leconte, because my pretty typical migraines had gotten much worse. Remember, that's part of the beginning of the BC story -- I went to get a CT of my sinuses and had a mammogram the same day since I was at University Radiology. (The sinuses were clear, BTW.)

Dr. Leconte prescribed Ubrelvy, which is taken as soon as I feel a migraine ramping up. It works within an hour to stop it or I take another dose within 2 hours, which will get it if the first one doesn't. It makes me feel a bit tired, though. Up until 4 days ago, since I've been taking Ubrelvy, I haven't had migraines day after day. I might have one a week or one every two weeks, or even just the one really bad one before I start my cycle.

The headaches I've been having since Thursday are treatable with the Ubrelvy, but only to a degree. Also, there's a limit to how much Ubrelvy I can take in a day (200 mg or 2 big doses, smaller doses are 50 mg). Because I'm waking up in the middle of the night with what seems like the next migraine flight about to take off, it ends up my needing 3 big doses a day.

At the same time the headaches started, so did the hot flashes. I don't mind these half as much because they are short-lived. However, they wake me up when I'm sleeping every couple of hours, which is not cool at all.

Why am I up at 3:30 a.m. writing this? An hour ago, I had a full-on night sweat, where I woke up completely soaked. Prior to taking Tamoxifen, a night sweat wasn't unfamiliar to me. In fact, before my most recent period, I had a run of them. It was the same each time, I'd awake with the front of my night gown or sleep shirt soaked from the chest up, as well as the back of my neck. I'd go towel off, perhaps put a large towel down on the bed (if needed), and go back to sleep. This time, I was in a pool of sweat down to my knees.

I had to towel off, re-clean my radiation burn area and re-apply the steroid cream (oh, just in case you thought I'd be free from any skin changes, the itchiness and irritation has returned in the past few days, too).

I took an Ubrelvy because the next migraine was queued up and sat down, wrapped up in my Aniversario blanket to write this to you. And now, I just unwrapped because I'm having another hot flash. Oh, the fun.

There has been some weepiness, as well. For most of my life, PMDD (I have a type of PMS that's pretty severe, gee what a surprise) has looked like either really weepy and down or really angry. Sounds like typical PMS? Well, the really weepy end can get pretty dark, and I don't talk about it much except to very trusted friends. I can tell it's hormonal because I don't typically feel this way except during PMDD (athough I felt pretty crappy about myself during the years prior to my divorice, but that's a whole other kettle of fish).

The last side effect is that I've started bleeding/spotting. This is definitely the Tamoxifen because it started on Thursday, at the very same time as everything else. I'd just ended a pretty typical period cycle on the 8th (today is the 20th), so it definitely wasn't time. This side effect should be watched because Tamoxifen causes endometrial (the lining of the uterus) cancer in 1 of 500 patients who take it. I'll be having an annual gynecological exam in a month, and I'm sure to be checked very carefully.

On Friday, I called Dr. Omene to speak with her about the faucet of side effects, but most importantly, the bad migraines. After hearing my experience, she suggested I take "a holiday" for 2 weeks from the Tamoxifen to see if it truly is the drug that's causing what's happening to me. Because I already get migraines (but not like this) and night sweats (but not the hot flashes), we have to test it.

She really wants me to be able to tolerate the Tamoxifen because if I can't, then we're in a bit of a pickle. I'm unable try the other type of drug (aromatase inhibitors) for breast cancer recurrence prevention until I'm menopausal. We spoke a bit about my preference for oopherectomy over taking the ovarian supressant drug. While she prefers the drug, the surgery would quickly put me into menopause (and I'd get whatever I'd get as far as hot flashes, etc.), and then we could try the aromatase inhibitors.

Those can be tough to tolerate for other reasons, but are much more effective in preventing recurrence than Tamoxifen in postmenopausal women. The one that Dr. Omene wants to try causes bone loss and pain, but taking calcium after menopause is necessary anyway, especially for women with osteoporosis in their family (me) and/or who might already be osteoporotic (also me, although to a small degree, as detected in spinal x-rays from a number of years ago).

So, I'm on "holiday" from Tamoxifen for a couple of weeks, awaiting the half life of 5-7 days to weaken and stop the migraines. It would be great if I didn't have to take any medications, but since the likelihood of recurrence is greater without them, it's best if I can try to take them.

Thanks for continuing to read along, send prayers and love, and support me in all the ways you do. Yesterday, as I wound the wool sent to me by Djaz, Mom and Dave, and Tom into workable balls, I thought about all the generousity of spirit and purse that has been aimed my way during this now 6-month journey. As ever, I am enormously grateful for every tiny bit of positive energy expended for my benefit. Every moment of it helps. Thank you.

Remember to schedule your screenings. Early detection is key.

The Breast Cancer Diaries, vol. 2, issue 8

Updates and Changes

It's been 15 days since the last BCD entry, and a whole lot can happen in two weeks. Or, in my case, a whole lot doesn't happen.

I made the decision not to go ahead with the Zoladex (ovarian suppressant) shot originally scheduled for the 7th, and then rescheduled for the 14th because my insurance hadn't approved it yet. Why not? I haven't yet been tested for the BRCA gene mutations.

If it turns out that I'm BRCA positive in any way, I'll have my ovaries removed. In that case, I wouldn't have needed the ovarian suppressant. I also want to see my new gynecologist to hear her take on ovarian suppression versus oophorectomy (removal of the ovaries and fallopian tubes).

I'm also doubtful that I'm going to take the Zometa infusion. However, I spoke with my incredibly nice periodontist, Dr. Cornick who was up to date on everything and asked me to come in for a different set of x-rays, which would tell him a lot more about the bones in my jaw. He also wanted to see the state of things since the last I saw him was in 2017. I hadn't returned because things have been going very well, dentally speaking. All that said, Dr. Omene said that if I didn't feel comfortable with it, I didn't have to do it.

The Tamoxifen, which I've been taking since February 3, has only affected me in the most minor ways, and for very short amounts of time. For instance, I had a hot flash that was different. Last week, I was looking under the bathroom sink for some extra dental floss, when suddenly I became very hot. Not sweaty, just really hot. Like Phoenix-in-the-summer hot.

I rose, walked over to the bed, laid down, and turned on the ceiling fan. By the time I was settled, I already felt cold. It was weird and intense, but only for 1.5 minutes. Since then, I've had a few night sweats, but nothing compared to what I've had in the past.

In terms of other effects, I felt pretty jittery for two days last week, hands trembling and everything, but that passed very quickly. My understanding is that Tamoxifen needs to build up in the system, which means there will be more to come, but so far, it hasn't been taxing, thankfully.

The state of things in Radiation Burns Land is much improved, thanks to the steroid cream and antibiotic ointment prescribed by my dermatologist, Dr. Singh. I saw him yesterday for a follow-up and a full-body scan. The full-body scan was fine, and I'll return every 6 months now for another scan.

He was happy to see how the radiation burns are healing, and said that in another month or so, I should be able to wear a bra properly (meaning that I'll be able to wear the band under the boobs as it's supposed to be, not pulled down on my stomach as I've been doing to avoid the band from abraiding the burned region). It's not as quick as I'd like, but it's a tough location to heal from burns.

Importantly, I'm still using the calendula ointment between applications of the the steroid cream. I haven't had to use the antibiotic in a while, which is good because it burned like crazy. Dr. Singh was suprised by that since they use it to treat burns. I'm not at all surprised. If you look at me wrong, my skin throws a rash.

In the beginning of February, I tried using an oncology recovery cream, whose ingredients looked harmless, to try to speed up the healing. But true to form, my skin wasn't having any of it and became a lot worse very quickly. Last week, I had another big peel, raw bits and all. It sucked mightily. Thankfully, it's much better now.

The random breast pains continue to lessen in quantity and frequency, but they still return from time to time, as predicted by Dr. McManus. Today and yesterday, especially, I've had the searing lightning strike feeling a bunch of times. So, I take some Alleve, and it eases up.

I'm not going to discuss the issue with St. Peter's, but it's still unsettled.

In cancer prevention news, I'm going to start adding turkey tail mushroom powder to my daily pea protein/mushroom powder/fruit smoothie in the morning. There's some data showing its success in fighting breast cancer recurrence.

I also have started Yoga with Adriene's 30 Days of Yoga series for this year. There are things that I'm just not able to do yet, and that's fine. I do what I can--slowly--but I'm working to add more activity to my day to increase healing and start the slow walk toward getting back in shape after all this. When the weather's been warmer, I have been getting out and walking in the park or around the neighborhood. Once in a while, I meet up with a friend for a masked walk. I'd like more of these.

As ever, I am grateful for all your support, kind words, great vibes, funny jokes/emails/private messages, in-person walks, long phone calls that cover lots of topics other than cancer, love, prayers, gifts, and puppy photos. Last week, I hit my limit with every single day being all-cancer-all-the-time. It's just been such a gift to have a few days when that is NOT the case.

The Breast Cancer Diaries, vol. 2, issue 7

Switching Gears

 

You may have noticed that issues 5 and 6 have not been made public. This is purposeful. Here is the latest issue.

 

Yesterday, after an hour + wait for Dr. Omene at the Rutgers Cancer Institute, I met with my medical oncologist and her nurse Trish (before and after Dr. Omene) for over an hour. We discussed at length the now three medications that will be on my horizon for some time: Tamoxifen, Zoladex, and Zometa. I had many questions, which Dr. Omene and Trish took the time to answer. 

 

The amount of information I wrote down and received in print outs, as well as the papers Dr. Omene cited (thanks to Mom and Dave for their searches) is sizeable. I've been a bit overwhelmed by all of it and the implications of what I'm about to put my body through. On the other side of the coin, as you'll read later, there is good reason to go to such lengths. So, I've been making sense of it in pieces. 

 

First, I will be taking a 20-mg pill of Tamoxifen daily for 7 years as an estrogen blocker. It's been given for decades to women like me whose cancer is positive for estrogen receptors. The tamoxifen binds to estrogen receptors, preventing cancer cells from connecting to them to feed.

 

While it's long been used to prevent a secondary breast cancer or recurrence in the same breast, it comes with a host of side effects, although some are stronger than others. Most are consistent with menopause, such as hot flashes; night sweats; irregular bleeding; and vaginal discharge, dryness, and itching. Tamoxifen also has a history of causing uterine cancer, strokes, cataracts, and blood clots in some patients. 

 

Once a month for approximately 2 years, I will be given Zoladex in a separate treatment area at the Cancer Institute by an oncology nurse. The goal of Zoladex is to suppress my ovaries and send me into menopause. The shot is actually a small, 3.6-mg pellet that's injected just under the skin in my abdomen. Then, it will spend the next 28 days dispersing, then suppressing my ovaries.

 

I've been told to expect intense menopausal symptoms for the first few months until my body evens out. In addition to the ones listed above for Tamoxifen, there may be a loss of libido, leg cramps, headaches, mood swings, and other side effects. After 2 months, Dr. Omene will test my blood for lutenizing hormone and follicle-stimulating hormone to see the effectiveness of the ovarian suppression. Within 4 months of taking this treatment, menopause should be achieved. 

 

Separately, I'll be contacting my primary care doc, to whom I've been asking all the oncology folks to send my records. Dr. Omene said that they don't do the kind of surveillance that I'd like (instead watching for signs and symptoms), but recommended I call my GP for annual physicals and a full blood panel to watch for abnormal levels. 

 

Speaking of testing, Dr. Omene put in an order to test me for BRCA mutations. I haven't been tested for them previously because I am the first in my family to have breast cancer. This testing will be done remotely. I'll have a phone or zoom conversation with the Rutgers Cancer Institute's Genetics Department to get a full background interview. They, in turn, will mail me a saliva test to return to them, similar to the popular DNA kits. If it turns out that I am positive, I'll discontinue the Zoladex and have my ovaries removed. 

 

Moving on to drug #3. After I'm menopausal, every three months for 2 years I will receive a 4-mg IV infusion of Zometa. It's a completely different kind of drug, a biophosphate that targets osteoclasts, and is typically given to patients with osteoporosis to strengthen bones. It's been shown to reduce breast cancer spreading to the bones when used as a treatment in women with my prognostic indicators. More importantly, there is evidence that it cuts the recurrence rate significantly in post-menopausal women. So, getting the Zoladex to do its magic first is key. 

 

The side effects with Zometa suck. There's also a lot of blood monitoring and examining kidney function. I'll feel highly crappy for a few days after the infusion -- flu-like symptoms, aches and bone pain, headaches, etc. The scariest side effect is osteonecrosis of the jaw. I'm someone who has had a LOT of dental work, including a cyst removed from my jaw, so it has me a bit worried. I have a call in to Dr. Omene's nurse to ask some questions and let them know about my extensive dental surgery history. 

 

In case you're interested in learning more about the meta-analyses of Zometa trials that Dr. Omene based her treatment plan on, here's the link: https://pubmed.ncbi.nlm.nih.gov/26211824/. 

 

It's all a bit much at the moment, but as with everything else in this journey, I'll keep on going and writing about it.