Tag Archive | femara

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)

Animal Farm

Growing up, I was never much of an animal person. We had “outside dogs” but pets never had pets in the house. So I never really had the opportunity to get close to a pet, and I never really desired it. Those of you who know me well, know that a German shepherd came as part of the package when David and I married. I wasn’t happy about it, and still regret the scratched floors and unending fur balls in the corners of every room.

Don’t get me wrong, I do love our dog. She’s very sweet, loyal and protective. But, as I like to say, sometimes I just wish she lived somewhere else.  🙂

There are many people who follow a plant-based diet because they are huge animal lovers. That wasn’t me. I did it for health reasons, and helping animals was just a side benefit. It’s difficult, however, to read up on plant-based diets without exposure to articles on animal cruelty. And the more I read, the more horrified I am by the treatment of farm animals. Why is it that we fight to protect our precious dogs and cats, and all other animals are at the mercy of those who would gain financially from the cheapest form of death they can inflict.

I’m presently reading “Meatonomics” by attorney David Simon. I got to hear him speak back in February and he told a compelling story. It’s amazing (but not surprising) how Big Ag has influenced law to the point that they are super protected from litigation. And they are allowed to get away with more and more appalling actions under the guise of “customary farming practices”. Basically, as long as other farmer are doing it, it’s ok. So as soon as one farmer finds a cheaper method, even if it’s cruel and unusual, once the others adopt it, it’s “customary”. It’s just insane.

I actually made a donation to a farm sanctuary this morning. I was talking to a co-worker about it and she was sharing information about the FarmSanctuary.org. I just felt compelled to support it. You might want to check it out, or some other local organization.

Off soap box. (Although I’m sure there’s more to come as I read those eye-opening book.)

*****

The update on my hubby… the surgeon put it in our court as to how soon (and if) to have the hernia surgery. David is weighing his options… get it done now while it’s super easy, but potentially have unnecessary surgery. Or play the odds that it will never get as bad as it is now. I felt we had some time to make the decision (he doesn’t want it to interfere with our December Disney trip…) but the decision is weighing heavy on him. I told him that, sort of like my decision around not taking Femara, it needs to be his decision. I don’t want to influence one way or the other. We all have to make decisions that are the best for ourselves. So I’ve provided some perspective and will now wait for his decision.

*****

My mother-in-law is also home and doing well after several days in the ICU. Unidentified internal bleeding that stopped on its own. We were really worried for a few days there but are glad she’s doing better. Never a dull moment.

*****

IMDb: Animal Farm (1954)

 

 

Without Evidence

Wednesday morning was my yearly follow up with my surgeon.  I sort of don’t understand why he needs to see me every year, since I would think the follow ups would be handled by my oncologist and radiologist, but it was explained to me that it’s best to have 3 people checking me out. The more, the better, apparently, to ensure no one misses anything.

The visit was none eventful, but always great to hear the words “no evidence of disease”.  My bp was a healthy 108/64, they were happy to see I was down 10 pounds since my last visit, and I was dismayed to find out I am an inch shorter than I thought I was!  5’5″.  I’m not sure where this all happened, since I can’t remember the last time I was officially measured.  Maybe it was at my last visit last year, but I guess that’s why my son towers over me now!  He got taller and I got shorter.

The surgeon did bring up reconstruction and promised that he will do so every year. He said it’s not to apply pressure, but to remind me that the option is always there. I’m still pretty adamant that it’s not worth the additional trauma to my already-traumatized body, but understand his need to bring it up.  He was not surprised to hear that I had given up on the Femara and was supportive of that decision. I’m grateful for a good report and a boring visit.

*****

Thursday was my quarterly visit to my naturalist.  Things were pretty good, although we did focus on hormone balance (I assume that will always be a topic of discussion!), detox of the lymphatic system due to pesticides that showed up in my scan (more on that in my next post), emotional support (primarily due to grief), and a new topic: memory. I continue to really struggle with short term memory in particular since chemo. It seems to be a bit worse of late, which is worrisome and bothersome, so I am glad to be focusing on that.  More details on this, as well, in my next post.

*****

New recipe from Forks Over Knives: Italian White Bean, Kale and Potato Stew.  It was really easy to make and my family loved it!

*****

IMDb: Without Evidence (1995)

Alien

Alert!  An alien has kidnapped my oncologist, assumed her image, and is treating patients on planet Earth!  I have no other explanation for the super pleasant encounter with this being at my follow up appointment today!

As you know, I have been most fearful of today’s appointment and my big confession about stopping the Femara.  I lost sleep over this over the past few weeks, as I replayed a possible confrontation over and over in my mind.  Based on our last Femara conversation (as well as a few others), I had reason to be nervous.  So I put my big girl panties on this morning and was prepared for a duel.

It didn’t help that she was her usual, fashionable 80 minutes late.  I paced in the examination room, preparing my arguments for the expected attack.  But it never came (I think I may actually be a little disappointed!).  Yes, she arrived late, but she was all sunshine and rainbows.  We had some casual conversation, and then she asked “so what’s new?”

I had my opening and with great confidence said “well, I need to tell you that I stopped taking the Femara.”  There!  It was out.  I waited for the scolding.  I waited for the lecture on why I needed to take it.  (Remember, I was told I had “no options” back in July.)  Instead, only a question:  “when did you stop?”  I explained that I stopped back in October, that my quality of life was impacted, that the joint pain was unbearable.  I told her about Best Doctors, and talking to my radiologist, and all the other things I was doing to stay healthy.  I explained that giving up my quality of life for a 5-10% improvement wasn’t worth it.

She asked if I wanted to try something else, or if I was done.  “I’m done.” She explained that there is some benefit to taking it, but agreed with the numbers I provided and said that it wasn’t for everybody.  That was it!  Whew!  What a relief.

In other news from today’s visit:

  • BP 108/70
  • Blood counts all normal
  • Chemistry results were all perfect (For those who think that you don’t get enough protein as a vegetarian, I should note that my protein was 7.7 within a normal range of 6.0-8.3.)
  • I don’t have to go back for SIX months!  (It feels a little like graduating from school!)
  • Physical exam was all good.
  • She said she needed to get my results from last year’s pap, as well as my colonoscopy, but I already know those were good, so no worries there.  She was happy to hear that I see the dermatologist annually to have my skin checked.
  • Tumor marker results are due back tomorrow, so I still have to hold my breath on that one. While I’m optimistic that the results are good, I’ve learned over the years that nothing is a sure bet.  (Not even difficult doctors.)

*****

Alien (1979) – http://www.imdb.com/title/tt0078748/

Relax

I finally got around to calling the spa at the Flamingo Resort to book my massage!  I opted for a “classic Swedish” massage and was surprised to hear I had a choice of 50 minutes or 80 minutes!!  In a moment of weakness, I, of course, signed up for the 80 minutes.  🙂  I can’t wait for the trip (have I mentioned that lately?).  I haven’t had a massage in quite a long time — not since my breast cancer diagnosis.  During treatment, with a compromised immune system, it didn’t make sense to risk it.  Following treatment, I was contending with all the joint pain from the Femara.  I just didn’t think I could tolerate it.

So now that the Femara is long gone, along with all the pain, it’s time to indulge and relax.

Speaking of the Femara, Wednesday is my next follow up appointment with my oncologist.  And it’s time to come clean… as in I need to let her know that I stopped taking the Femara.  She doesn’t know, and she won’t be happy.  I’m actually a little scared!  (She’s tough!)  I keep anticipating how that conversation will go and am trying to prepare a response.  She tends to put me on the defensive right away, with her wonderful communication style.  I’m trying to prepare myself so I don’t react badly…but she tends to bring out the worst in me.  Gotta love that in a doctor!

*****

Relax (2005) – http://www.imdb.com/title/tt3395128/

New Year’s Eve

Is it me, or did 2013 fly by?  It’s been quite a year.

2013 saw the end of chemotherapy in January, radiation in February and March, and the start of Femara in April.  I got my portacath out in May and that signaled the officially end of treatment for me.  I debated the benefits and risks of the Femara for months on end, and came to what, at least for me, was the right decision.  In October, I officially stopped.  Since then I have felt remarkably better.

I started my plants-based journey in January and developed a great repertoire of recipes.  It got easier and easier to do as the year went on, and even David and Ethan are (relatively) on board.  (It’s not like they have a lot of choice!)  I experienced measurable improvements in my health as a result, including a 13-pound weight loss, and reductions in triglyceride and cholesterol numbers.  I look forward to shedding the last 10 pounds in 2014.

We got Dad through radiation for cancer, and we started on the road to wellness for my Mom in 2014.

During 2013, we enjoyed trips to Newport, Rhode Island, Niagara Falls, and the Finger Lakes in New York.  I got back involved in music after joining Crystal Band with Ethan, and we enjoyed lots of laughs with family.

Through the Ladies in Pink Party and this blog I had the distinct pleasure of sharing my story — my challenges and successes — with all of you.  As I have said before, this blog has taken on a life of its own, becoming much more than I ever anticipated.  Here are some fun facts from my WordPress annual report:

  • The concert hall at the Sydney Opera House holds 2,700 people. This blog was viewed about 17,000 times in 2013. If it were a concert at Sydney Opera House, it would take about 6 sold-out performances for that many people to see it.
  • In 2013, there were 211 new posts, growing the total archive of this blog to 322 posts.
  • Viewership came from 57 countries!  Most visitors came from The United States. Singapore & Canada were not far behind.
  • Those who commented the most frequently on WordPress are:  my blogger friends Helen (http://lymphnodetransplant.wordpress.com/) and Dr Lisa Marie (http://drlisamallen.wordpress.com/), and Gina H.  Thank you!!  And for those who comment on FaceBook, thanks to you as well.  Your encouragement and the ongoing dialogue are what keep me going!

I thank you all for your continued readership and walking with me on life’s journey!

Here’s to love, happiness, prosperity, and, most importantly, health for us all in 2014!

*****

New Year’s Eve (2011) – http://www.imdb.com/title/tt1598822/

Random

Just some random updates:

  • My husband seems to be doing well, although there are no updates on what caused his “episode”.  In good news, he has cut back his coffee intake to one (yes, ONE) mug a day.  Hallelujah!  I’m so proud of him!
  • I am loving my new giant cast iron frying pan!  It’s great to cook in, even if it is hard to lift and takes up the whole stove.
  • I have tried a few recipes from my newest cookbook: “Crock Pot Vegetarian Recipes”.  So far, the ones I tried were great. (My favorite:  Pesto, White Bean & Pasta Stew.)  There are several that I probably won’t try because they involve needing to do something part way through the cooking time.  Say what?  Isn’t the point of crock pot cooking to turn it on and that’s it until it’s done?  If I had time to tend to a crock pot, I probably wouldn’t need to use a crock pot!
  • Physical therapy continues to go well.  I am finally feeling good stretches through my shoulder, and under my arm pit and right chest.  It feels like the scar tissue is finally pulling apart and I have more mobility.  I think PT will be winding down in the next few weeks.  I don’t know that I have approval for much more.
  • I received a survey from Best Doctors today.  It’s a survey I was happy to fill out.  It was a great service and I highly recommend it to anyone who has that benefit through their employer.
  • My Femara joint pain is almost all gone. I only have the joint pain occasionally — usually if I sit too long, or when I get out of bed some mornings.
  • I must have something viral going on:  cold sore on my lip is healing, but I also have a hive (at least I think it’s a hive) in my sternum area.  It comes and goes, but it always in the same spot.  Hmmm…
  • We had fallen out of routine on our juicing but got back on track this past weekend.  Gotta keep that going again!
  • I started taking phosphatidylserine last week after my colonoscopy (I had to stop taking all supplements prior to my procedure).  One of my blogging friends suggested it for chemo brain (aka my memory issues).  So far no noticeable difference but it’s only been a week.  I’ll keep it going for a while, assuming I remember to take it!  🙂
  • My lymphedema seems to come and go… it probably changes with how often I remember to do my lymphatic massage and/or how much I overuse my right arm.  Or maybe it changes with the weather; I can’t really tell.  I just know when it starts to feel “fluid-y” that I need to get working on it again.  I really need to remember to do that on a more regular basis.  (see prior bullet…)

Time to go watch Rudolph the Red-Nosed Reindeer!

*****

Random (2013) – http://www.imdb.com/title/tt2027136/

Residual

It’s been exactly 10 months since I received my last chemotherapy treatment (Adriamycin, Cytoxan, Taxotere).  The time has gone by quickly and I was deluding myself in thinking that I would rebound quickly from the treatments.  I’m sure I am experiencing residual effects from the Femara also, but I think many things can be attributed to the chemo.  It is, afterall, poison that is put into your veins.  No doubt there are still toxins lurking in my body.

The most lasting residual effect of the chemo is definitely the impact to my memory.  My short-term memory is pretty pathetic, and even long term memories are tough some days.  I can run into people I’ve known my whole life and absolutely panic over the fact that I cannot think of their name.  Granted the aging process is also a contributor to this, but some days I really worry myself!  It isn’t bad enough to impact my daily functioning, but it can be frustrating and embarrassing!

As I mentioned in a recent blog, my vision has suffered and I need to get that appointment made so I can get some decent glasses.  (But alas, due to above mentioned issue, I keep forgetting!)

The joint pain from the Femara is better but still lingers.  Some days are better than others, but I look forward to a day that I wake up with no pain in my joints.  Occupational and physical therapy have been a great help to the pain in my shoulder from the lymphedema.  But I still have pain that I had during chemo; specifically, the soft parts of my feet are very sensitive and feel inflamed a lot.

My energy level is getting better but it still really hits me from time to time.  I wonder how long it really takes for all those toxins to leave your body.  If you read some of the more traditional medical sites, they will tell you “days” or at most “weeks”… but when reading discussion threads, blogs and such, the story is very different.  Those who live this note the “lasting effects” lasting a very long time.  Years even.

I certainly understand my body will never ever be the same.  I hope that my juicing, clean diet, and supplements will all continue to help me heal, and I truly believe I’m in a better place than I would be if I didn’t do any of those things.  With only 10 months chemo-free, I’ll continue to be patient with myself and be grateful that I am doing as well as I am.  No major complaints here (now that I quit the Femara), just reflecting on where I am after 10 months.  I still can’t believe it’s been that long!  Where has the time gone???

*****

Residual (2012) – http://www.imdb.com/title/tt2582218/

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

The Mirror Has Two Faces

As you know, I try to read up on cancer, alternative approaches to health, cook books, and anything health-related I can get my hands on.  I’ve been trying to read “Anticancer” and “In Defense of Food” of late, but I’m actually having difficulty getting through them.  Maybe because they are both more of what I’ve read previously?  I do plan to finish them, but decided to start something new.

Today I picked up “Knock Out (Interviews with Doctors Who Are Curing Cancer and How to Prevent Getting It In the First Place)” by Suzanne Somers, recommended by one of my blog-mates.  I have to say, I am hooked after only reading the Acknowledgements, Foreward and Preface!  Here are just a few statements that just resonated with me and make me want to read more:

“Conventional medicine’s approach to cancer prevention and treatment is a debilitating, often deadly, fraud.”  (from the Foreward by Dr. Julian Whitaker)  Wow.  Very strong statement!

“According to the New York Times, adjusting for the size and age of the population, cancer death rates dropped only 5 percent from 1950 to 2005.  What other technology has performed so miserably over this fifty-five-year period?  Would you accept a medical therapy that has not improved much since 1950?” (from the Preface by Suzanne)  I think we are continuously kept in the dark on the true results of the “war on cancer”.  Think of all the money that is raised for cancer research.  Can you imagine putting that much money into ANYthing and not seeing dramatically different results?

The book is divided up into sections featuring doctors who are both curing cancer  and preventing cancer.  I can’t wait to dive in further!

*****

As I mentioned yesterday, I received my Best Doctors report and am set up with a meeting to review next Friday. In general, the expert said that my diagnosis and treatment were correct.  He put me at a 77% 10 year survival rate, and offered only Aromasin, Arimidex and Tamoxifen as alternatives for the Femara.  Obviously, I did get a “conventional” doctor, even though I was hoping to get one who had some experience in homeopathy.  I’ll provide additional details after I have my appointment next week, but the gist of the document is that, in his opinion, my doctors have done all the right things.

Counter that with my post on the Dr McDougall Discussion Board where someone posted reference to a study that talks of the toxicity of the Femara, as well as demonstrating that, while the cancer-recurrence rates are lower on Femara, the death rates are not.  So you don’t get cancer back, but you die of something else.  (Note: 4 years out, the overall survival rate was 96% for the Femara group and 94% for the placebo group.  Also note:  that this particular study was for women who took five years of Tamoxifen first, so not an exact situation to mine.)  The site also featured posts by women who decided on no aromatase inhibitor from the get-go and are thriving many years out.

The general point here is that data is data and it can be used and “spun” to support any argument you want to make.  There will always be two sides (or more) of the story; you really need to trust your own instincts and continue to educate yourself.

*****

The Mirror Has Two Faces (1996) – http://www.imdb.com/title/tt0117057/