Wednesday, April 17, 2013

Tamoxifen, Not a Love Story. Part One.

Here is an excerpt from a recent post on the #BCSM website:
Endocrine Therapy Side Effects – Your Input Requested! By DrAttai On April 13, 2013 · 7 Comments

A bit of crowdsourcing help, please! I’m giving a talk at the upcoming The American Society of Breast Surgeons Annual Meeting – the title is: “Endocrine Therapy Side Effects and Treatment of Side Effects- What the Literature Says, What Your Patients are Saying”
Anyone comfortable with leaving your thoughts here, please do. No one will be mentioned by name or will be identified in any way – I’m interested in the side effects and remedies only. (...) Thank you all in advance for your help! After the talk, I’ll post the slides.
Here's my input:

I have had three primary Breast Cancers. Each was ER positive.

After my second primary, in 2005, I agreed to go on Tamoxifen, starting about a month after completing radiation. At that time, I still had an active infection in the surgery site (from lumpectomy 6 months prior); I was still healing from the open wound/burn caused by radiation, and I was in very poor shape physically, emotionally and spiritually. Ironically, at diagnosis in March 2005, I was the fittest, leanest, healthiest I had ever been, with an athlete’s resting heart rate, and I have always been a “tough” person with a high tolerance for pain.

So, when I began Tamoxifen, I was very much diminished. Immediately, I got terrible headaches (they went away after a month or so), and yes, I would get “hot” but nothing too extreme. That, I could live with.

Very quickly though, I went from having very little energy to having none whatsoever. My mind became completely and utterly shrouded in clouds of dense fog that every now and again would thin out, but only for a second or two. I began to have recurring nightmares* where I was trying to walk (never mind run!) and could not lift my feet, and when I would try to call for help, if I could find the words, they would come out in extreme slow-motion. I described it as feeling like I was constantly underwater, walking uphill, against a strong current. I have always had a sharp, wicked-fast brain, especially with words and concepts. That all turned to blubber. I would blank out, could not find the words/terms I needed to express myself, and to make matters worse, it constantly felt like I had those words at the tip of my tongue but could not summon them…. So there was an almost constant state of distress, anxiety and dismay. And fear that I would be like this forever. 

Many days, I did not feel safe to drive. Meanwhile, I was busy trying to get my life back together after this second cancer, was searching for work, and living alone with nobody to take care of me. At the time I used to joke that I could certainly carry on like this for 5 years (usual course of treatment with Tamoxifen) if I were independently wealthy and had a staff — a chauffeur, a chef, etc. to take care of everything. But even if I had been living the Downton Abbey lifestyle, it would have been unbearable and I wouldn’t have been able to consider continuing to exist like a zombie.

I toiled along for a year, and finally, after a detailed conversation with my oncologist, she agreed to give me a month off, just to see. Immediately I began to feel (only a tiny bit) better, and we prolonged the drug holiday. As I continued to improve (still only at a snail’s pace) she finally recommended that I stop taking Tamoxifen as it was having such a severe impact on my daily life. 

I was and still am extremely dismayed and angry that Tamoxifen is not viewed by many as a drug whose side effects can be as serious and impactful as those of chemo. I have done chemo, so I know of what I speak. Chemo is brutal, devastating, yes. BUT, for early stage Breast Cancer, adjuvant chemo is not something you have to do for 5 years. I am saying this because when I was done with “treatment” (i.e., radiation) for my second cancer, I had exhausted all my savings and resources and could barely afford my rent and health insurance premium, never mind medical bills. I reached out, for the first time in my life, for financial aid, and was told that Tamoxifen did not qualify as “cancer treatment” by organizations that offered to help cancer patients going through cancer treatment. So, if I had not spent my own money when going through what these organizations termed “treatment” and asked them for help then, maybe I would have had some left over by the time I was dealing with the side effects of Tamoxifen??

If I had been able to continue the prescribed course of Tamoxifen, I wonder if I would have developed a third primary. I will address my third primary in a separate comment.

When Tamoxifen has side effects like these, you don’t look sick, you are not bald, your blood counts are fine…. your suffering is invisible and you are very, very, very easily dismissed. Please shed light on this and help us.

Thank you for reading,

Liza Bernstein

*By the way, the nightmares I described were nightmares, but they also were expressions of what many of my waking hours felt like.

PS: here's the post I wrote about how this #BCSM initiative is a form of collaborative medicine in action.

More Collaborative Medicine In Action, #BCSM Edition, Part Two.

It began with a post I caught on Facebook:

Tweets ensued, including:
And now, on the #BCSM website, a second opportunity for patients to contribute to the advancement of medical knowledge (I wrote about the first one here). Yes, that does sound pretty grandiose! What I mean is this: when you are experiencing the type of side effects a drug like Tamoxifen can induce, you can discuss them with your oncologist, you can vent about them at support groups, you can blog and tweet about them ad nauseam. That's all fine and dandy....

But to be able to give that information to a physician who not only cares deeply, but who is planning to use that information in a presentation she is giving at a medical meeting.... well, that does get you thinking pretty big.

I continue to be excited and inspired by what we can accomplish when we harness technology to facilitate change.

Friday, April 12, 2013

Collaborative Medicine in Action

It began with a tweet, that I RT'd after reading the related post on the #BCSM website.

Others chimed in, including:


I've excerpted the introduction from that post here:
Unique Opportunity for Patients and Advocates! 
By DrAttai On April 11, 2013 · 13 Comments 
Here is a unique opportunity for patients to have their voices heard, BEFORE a clinical trial gets approved. Many thanks to Dr. Julie Gralow (@jrgralow) from the University of Washington for asking for advice from our community. 
Patient Survey Regarding Follow-up of Early Stage Breast Cancer  
We are seeking patient input through this survey to help in planning a national clinical trial designed to determine how to optimally screen for breast cancer recurrence.
For details about the clinical trial being planned, please read the rest of the post. It's important and fascinating. 

Just as important and fascinating is the ensuing dialogue, much of which was sparked by the last  (and only open-ended) question in the brief and easy Patient Survey. I saved my answer to that question, and am reproducing it here: 
"Last Question: This study would allow us to study many other breast cancer “survivorship” questions during long-term follow-up. What are the main cancer and/or treatment-related problems that you think we should consider including in this study? (for example, this might include difficulty concentrating/”chemobrain”, menopausal symptoms, numbness/tingling, depression/anxiety, pain, weight gain, sexuality/body image, fear of cancer returning)."
"All the items mentioned in the above question should be included.

I would be most interested in seeing how you would approach studying these additional important issues so as to get actionable data.

People who survive early stage BC after receiving adjuvant treatment (I have had three primaries myself, so I know from experience) end up with a host of long term side effects, from chemobrain/cancerbrain to higher instances of anxiety/depression/"ptsd"-symptoms, etc. I know you know this too.

Another aspect of long-term survival is the psychological impact of being watched so carefully by one's medical team (pro = more likely to find a recurrence or relapse sooner; con - heightened anxieties, etc due to fear of recurrence). Being followed every few months with blood tests could both give a sense of reassurance and heighten the anxieties. This also contributes to the isolation many survivors experience. You have to keep going back for follow-up visits, keep wondering if IT has returned, while most everyone else you know continues with their usual routine.... This is what you just have to learn to live with.

Meanwhile, now that I am in the position of basically having to rely on hoping I don't get any symptoms, it is terribly anxiety-producing. My oncology office happens to order tumor markers during long-term follow up, so if mine happen to go up, I will be one of those few women who will have an additional possible clue as to whether I have developed mets. I also understand there isn't always a 1-1 correlation between marker levels and the development of mets. More uncertainty!

This is a great idea for a study. I just hope there will be other more reliable pathways to detecting Early Stage Mets (for example, non-increased-radiation studies: I'm tapped out for PET and CAT scans, per my oncologist, due to the numerous scans/mammos, etc I've already had in my 19 yrs of 3 BC primaries. We will only use those in an emergency at this point.). We need better tools!

I appreciate your thoughtfulness and intelligence in reaching out to us in these preliminary stages of your trial. My name is Liza Bernstein and I can be reached via Twitter at @itsthebunk. I'd be happy to contribute further to your thinking process during this development process and answer any questions you might have, if you were so inclined.

Thank you,

Liza Bernstein"

Not surprisingly, some of my concerns are echoed in the comments from other survivors, and the great thing is that the researchers are addressing them as they come up. 

Surely this type of dialogue will help researchers design even better and more relevant studies. It certainly empowers survivors to join in the process. The ensuing dialogue gives me hope that our ideas and concerns will be seriously considered.

This is an example of what collaborative medicine, fueled and enabled by social media and technology, could look like.