Tag Archive | aromatase inhibitors

A.I. Artificial Intelligence

Most people, when they hear the term “AI”, automatically think of artificial intelligence. Unless, of course, you are a breast cancer survivor. Then AI means something completely different. For us, it stands for “aromatase inhibitor”.

What exactly is an AI? Susan G. Komen defines AIs as follows:

“Hormone receptor-positive breast cancers need estrogen and/or progesterone (female hormones produced in the body) to grow. (AIs) lower estrogen levels in the body by blocking aromatase, an enzyme that converts other hormones into estrogen. This slows or stops the growth of the tumor by preventing the cancer cells from getting the hormones they need to grow.”

The three aromatase inhibitors are Anastrozole (Arimidex), Letrozole (Femara), and Exemestane (Aromasin).

For those of you who have been following along here from the get-go, you remember that I took Femara/Letrozole. You also remember how very unpleasant it was for me and how, after about 6 months, I stopped taking this drug. I felt like $h*t and struggled with insomnia for several months straight. I was in pain all the time and the lack of sleep made me feel like a zombie. It was pretty nasty. I sought a second opinion at that time, reviewed a bunch of statistics, and was given permission by all my doctors to stop taking the Femara.

Fast forward to today, literally this morning, when I started a new AI. I am terrified of the side effects, but agreed to give the AIs another whirl given my recurrence. My Penn oncologist has opted for Aromasin, since it is molecularly different from the Femara and Arimidex. Since these last two closely resemble each other, it stands to reason that if I had trouble with one, I would have trouble with the other. It’s hard to believe that I would be terrified of something so tiny and unassuming:

But one glance at the side effects and it’s easy to understand the fear: hot flashes, muscle and joint pain, headache, fatigue, nausea and/or vomiting, osteoporosis (I have to go for a dexascan in a few weeks to baseline), heart problems, changes in mood, depression, insomnia, vaginal dryness/atrophy, and loss or thinning of hair. So your risk of dying is lower, but when I was on this previously, I felt like I was dying already.

On the plus side, my Penn oncologist thinks my side effects may not be so severe this time. She indicated that women who are thrust into menopause by chemotherapy have a harder time, as was my experience back in 2012. There was no opportunity for my body to gradually decline on hormone levels; it was more like “bam!”, you’re in menopause. So the drop in levels from the AI was significant, resulting in more severe side effects. This time it’s 7 years later, so I’ve had the chance to settle into menopause. Theoretically, the drop will not be as significant and the side effects more tolerable. Fingers crossed that is my experience.

If it turns out not to be the case, there are still other options to consider, but I need to give it at least 30 days.

I did recently learn that soy is actually an aromatase inhibitor, which might explain why those who follow standard Asian diets have lower incidence of breast cancer. If things get really bad, perhaps eating soy every day will be an option. Stay tuned.

Day one of my AI is here. Wish me luck!

 

IMDb: A.I. Artificial Intelligence (2001)

The New Plan

While I do not yet have specific dates, I do have my new plan for treatment after two trips to Philadelphia. (Yes, two, in a matter of five days…) I thought it would be easiest to break it up by modality in more detail below but first I wanted to mention how wonderful University of Pennsylvania was: Appointments on time. Doctors who listened attentively and spent significant amounts of time with us. Detailed explanations on each step of the game plan. Patient listeners. In total, we spent 3 1/2 hours with 3 separate doctors – my oncology surgeon, my oncologist, and my plastic surgeon. David and I both felt very comfortable with all of the doctors (despite the fact that they all looked too young to be doctors!), and felt a sense of relief and encouragement when we left.

Here are the details of our plan forward…

Surgery

My surgery will likely be scheduled in mid-to-late January. The surgeon will remove the mass and does not think that the muscle will be impacted, as Invasive Lobular Cancer does not typically attach itself to the muscle. No lymph nodes will be removed since there is no evidence of disease in them. Additionally, because I already have lymphedema, she did not want to risk impairing the use of my arm for merely exploratory reasons.

She agreed that doing revision surgery as part of the excision surgery and submitted the referral to the plastic surgeon while we were meeting with her on Friday morning. By Friday afternoon, I had already heard from the plastic surgeon’s office and was scheduled to meet with him on Christmas Eve (hence, the second trip). The plastic surgeon was understanding of my dissatisfaction with my original surgery and noted lots of extra skin and “dog ears”.  (For your edification, dog ear is a term used to describe a characteristic puckering of the skin that can occur after surgical wound closure. These are a common and generally preventable problem, but for some reason, many women have them after mastectomy. I believe that surgeons can be either lazy, or under the false assumption that most women will return for implants, so who cares?)

The oncology surgeon will simply remove the tumor, and then the plastic surgeon will take over, removing the extra skin and performing liposuction to remove the excess tissue/fat within those pockets of skin. He was very clear about setting expectations. It will NOT be perfect, for the following reasons.

  1. He is fixing someone else’s surgery. It’s always easier and better to do it right the first time.
  2. It is unclear how much skin the first surgeon will remove, or how deep she may need to go, as part of the tumor removal.
  3. The right side has been radiated, and radiated skin does not stretch as well, nor does it heal as well.
  4. Because of my existing lymphedema, he will have to be much less aggressive on the right side, so as not to further damage the lymphatic system.

I was grateful for his honesty and, while it won’t be “perfect”, it will look remarkably better.

Surgery will be done on an out-patient basis and should only take 60-90 minutes! I may possibly have drains in for about a week.

 

Chemotherapy

Because my recurrence is the exact same cancer that I had previously, chemotherapy will not be effective. If this had been a new primary cancer, chemo would have been on the table. However, since it’s the same one, these cells have already seen chemo and survived it. The oncologist also expressed that I had received one of the harshest and most toxic combinations of chemo, which is no longer given in the manner I received mine, so if the cells survived that, they surely won’t be impacted by something less than that. I am relieved to not have to do chemo again!

 

Radiation

There is such a thing as a lifetime limit on radiation. Generally speaking, once you have played that card, you cannot play it again. However, at UPenn, they do re-radiate if it’s appropriate. So this will be looked at in terms of how much radiation I received previously. If there is any room between what I received previously and the lifetime limit, I may have some radiation. Perhaps it will be at lower doses or fewer sessions, but they will give me what they can and believe there is some benefit in this. I did not meet with a radiologist at Penn, but they said they often work with my local radiologist and he will make the final determination.

 

Systemic Treatment

This is the part I worry about the most because I struggled with the Femara so much the first time around. As some of you remember, I dealt with insomnia for months on end, had bad night sweats, and was constantly in pain. I could barely move on this drug and felt like I was 100 years old. That said, because my cancer is “highly estrogen positive”, taking anti-estrogen drugs will have benefits in staving off future cancer growth. She explained that, because I was not menopausal at time time I was taking the Femara (or rather newly menopausal), the drop in estrogen was significant and had greater side effects. Now that I have been menopausal for seven years, after being thrust into menopause by chemo, the drop in estrogen will be less and perhaps, the side effects will not be as severe.

She promised not to start me the Femara, though, and we will keep trying until we find one that I can tolerate without loss of quality of life. Options include aromatase inhibitors like Arimidex or Aromasin, Faslodex (a very painful shot in the butt!), Exemestane, or even Tamoxifen (normally given to pre-menopausal women, but better than nothing). Ibrance is a drug approved for metastatic breast cancer (you’ve all seen the commercials) and that’s in our back pocket, if needed. While I am not technically “metastatic”, the local recurrence could be seen as such if we needed to go that route.

This treatment will start after any radiation. The goal is to get me to power through five years of this type of systemic therapy.

 

Other

My case will be reviewed by the UPenn “Tumor Board” in coming weeks. They are a brain trust, of sorts, with all their Breast Cancer team experts (oncologists, surgeons, radiologists, pathologists, etc.) reviewing cases. If anyone comes up with any different thoughts than what is presented above, they will let me know.

I was impressed that they reviewed every little thing that was on my tests. Thinning of uterus lining, so let’s do a non-urgent transvaginal ultrasound in the future. Scattered bone foci (also referred to as bone islands) that they don’t see as concerning. Possible diverticulitis or epiploic appendagitis. Nothing to treat with that, but awareness that it’s there. They were just so very thorough, with all my tests and pathology slides being reviewed by all the respective experts on their team.

I am glad to be going to Penn for my treatment. I feel as comfortable as I can about the game plan, and I’m actually very happy about being able to get the revision surgery done as part of this. I know David felt more comfortable after meeting with everyone and, of course, we were happy to hear the word “curable”.

For now, I’m just waiting for my surgery date and enjoying the holidays!

As always, thank you, all, for your support and encouragement.

 

IMDb: The New Plan (2018)

The Answer Man

This afternoon I had my meeting with my case doctor from Best Doctors.  He was very nice and informative.  He answered all my questions, providing a thorough explanation.  Gee, wouldn’t it be nice if all doctors were like that….?  It was so refreshing to have such an open conversation, with detailed explanations.

Anyway, here’s what I learned:

Q: What does “adjuvant” mean?  (This word popped up throughout my report and I had no idea what it meant.)
A:  He described it as any treatment outside of surgery.  I did look this up also and the dictionary said it was something to increase effectiveness.

Q: I had my tumor marker taken yesterday and it was lower than last quarter.  Is it better the lower it is, or as long as it’s in range, it’s good?
A:  As long as it’s in range, it’s ok.  But primarily, the CA 27-29 marker is used for metastatic breast cancer (which mine is not).   It’s ok to use as a guide; certainly if it went up, it would be something to look into.  But it can fluctuate and can also spike during illness, so sometimes you have a false positive.  He indicated that the standard follow up for non-metastatic breast cancer is mammograms, physical exam, and labs.  Since I won’t be having a mammo ever again, it will be physical exam for me.  He also said they monitor the liver and kidney functions, as an example, and look for anomalies.  At that point they would do any scans.  But no point in additional radiation from scans if there is no evidence of any problems.

Q:  Part of the expert’s report had reference to grade III/III downgraded to II/III.  What does that mean?
A:  The grade is given by the pathologist and speaks about how “ugly” the tumor is.  It also may play into treatment decisions, depending on where you stage.  Grade I is the least concerning; III is the most aggressive.  So mine apparently was pretty ugly in the beginning, but was downgraded to II after “BWH review” (I forgot who BWH is, but the doctor said he really trusted their evaluation).  I can take a bit of comfort from the downgrade, but it had no bearing on my treatment plan since the size of the tumor and the micro-metastasis pretty much determined my treatment fate.

Q:  There’s reference to a study on aromatase inhibitors (i.e., the dreaded Femara) and it refers to “early stage” breast cancer.  Define early stage; I was stage III so this doesn’t seem applicable.
A:  In this particular study, “early stage” meant stages I, II, and III, so it did cover me.  (This particular study was in regards to women with aromatase inhibitor intolerable symptoms who quit the AI or switched to another one.  Of 503 women, 32.4% stopped AI therapy within 2 year because of adverse effects. 24.3% stopped because of musculoskeletal symptoms.  38.6% switched to another AI but only lasted about a year.  That speaks volumes to me, and shows that I am certainly not alone.)

Q:  I had asked for non-pharmacologic options for Femara side effects.  There are two things listed under this question:  Effexor and Gabapentin.  What are they?
A:  Both are prescription drugs (hmmm; I guess they missed the point of that particular questions).  Effexor is an anti-depressant.  Gabapentin is an anti-seizure medicine that is also used for neuropathy.  They are supposed to be helpful for hot flashes and night sweats.  Seriously?  I’d rather have the flashes and sweats!  But thankfully, they have subsided with recommendations from my naturalist.  (The report only suggested “NSAIDs” for the joint pain… basically Tylenol, Motrin, etc.)

Q:  I wanted to make sure I understood the “prognosis” information.
A:  “Estimated survival at 10 years is 77% with the use of chemo and hormone therapy.  Risk of recurrence is approximately 25% with these therapies.”  Not taking the Femara would reduce my survival rate by about 5%.  The 77% is for mortality by any cause… not just cancer.
Q:  That assumes “all things being equal”, right?  Meaning, whatever lifestyle choices people made before cancer, they continued to make after cancer?  There are no studies to show the benefits of lifestyle changes like diet, exercise, supplements, etc., correct?
A:  While it’s possible that some women in the studies made similar lifestyle changes, there are no studies to indicate the possible benefits of making such changes.  It’s just too hard.

My conclusion in all this:  For an estimated 5% benefit, the damage of the Femara is not worth it.

*****

The Answer Man (2009) – http://www.imdb.com/title/tt1187041/?ref_=fn_al_tt_3