I am eager to tell you about a new research opportunity that some of you might qualify for and want to participate in.
As you likely know, the majority of breast cancers are hormone positive and endocrine therapy is commonly prescribed for this group of patients as part of their treatment plan.
Endocrine therapy is also called hormone therapy. Such therapy includes aromatase inhibitors (anastrozole, exemestane, lestrozole), tamoxifen and a few other drugs.
Many of you are taking one of these prescribed medications and are experiencing unpleasant side effects.
Yes, we’re talking about the drugs we love to hate. And yes, the side effects can be many and quite unpleasant. Okay, downright nasty.
There is a dark side to these medications, for some of us anyway. (Of course, some tolerate their prescribed drugs quite well.)
Some of you were taking one of these medications and have chosen to discontinue due to those nasty side effects. Others declined to even begin.
Some of you feel supported by your medical team when seeking help managing side effects from these drugs and some of you, not so much.
Regardless, this is your chance to let your voice be heard!
You might want to read and download, Endocrine Therapy – Managing & Making Decisions About Your Aromatase Inhibitor Medication.
Now, about the survey…
This survey is open to participants everywhere, including men, who’ve been diagnosed with hormone-positive breast cancer and have had endocrine therapy prescribed for them.
I love the inclusiveness of this study. This is a rarity. The study is open to women, men, any age, any stage (including mets), those currently on endocrine therapy or with a past history of endocrine therapy, and it’s open to participants from any location. Yes, any!
Dr. Deanna Attai is the lead investigator of this UCLA-backed research effort to gather responses from patients like YOU about the side effects you are experiencing from your prescribed endocrine therapy.
As the survey states:
Approximately 25-30% of patients with breast cancer who are prescribed endocrine therapy do not complete the full course of treatment, and some patients never start. Side effects of endocrine therapy are well documented but there is very little literature on the role of the medical team in helping patients manage treatment-related side effects.
I think we can all agree, the latter needs to change. And here’s your opportunity to help do that!
A little more info about the survey that Dr. Attai shared with me:
All responses are anonymous and once the survey is complete, we will analyze the results with the help of a statistician. We plan to then write up the results with the aim of publishing in an oncology-related journal. This will rely on obtaining a large number of responses. Because we are looking at so many variables, a large number of participants will be required to achieve any statistical significance.
Helping your medical team better understand your side effects from these medications will enable them to better help you (and future patients) manage them.
Again, the more participants there are, the more helpful the results will be.
So, what are you waiting for?
If your breast cancer is/was hormone positive and you are on, have ever been on, or was offered but declined endocrine therapy, why not participate?
Complete the survey.
I did. It’s quick. It’s easy. You get to be anonymous.
If you qualify, I hope you choose to participate too.
Let YOUR voice be heard!
Don’t delay. This survey closes on June 9, 2019.
To learn more and/or to participate, click on the blue link below:
Endocrine Therapy for Breast Cancer: Patient-Reported Symptoms, Adherence and Role of Medical Team
Also, please help spread the word!
Share this post far and wide. Or share Dr. Attai’s post. Better yet, share them both!
If your breast cancer was not hormone positive, consider sharing about this important survey anyway. Yes, it’s that important.
Thank you!
Are you presently on, or have you ever been on endocrine therapy that was prescribed for you?
Has endocrine therapy been prescribed for you, but you declined to begin?
If you qualify, do you plan to participate in this survey, or have you already done so?
Linda Francois
Wednesday 12th of June 2019
Yes, I took the study. So glad to have an opportunity to speak to the side effects and the way the doctors make you feel like you are the only person in the world who has these, that you are stupid, misguided, or wrong that they are related, that your concerns about osteoporosis, stroke etc. are silly, and that anything but the one size fits all regimen is reckless.
Nancy
Friday 14th of June 2019
Linda, Thank you!
Gayle. Andersen
Thursday 23rd of May 2019
Hi I'm estrogen positive & will complete treatment may 28th. On June 10,2019 I will see oncologist & he is wanting me to take a drug for the next 5yrs. I have already told him I'm not interested! He will revisit the drugs again. I have not changed my mind.
Nancy
Friday 24th of May 2019
Gayle, Of course, the decision is entirely up to you, but remember, everyone is different and certainly not everyone experiences nasty side effects and if they do, not all to the same degree. You might want to give the medication your oncologist advises a try. But again, it's your decision. Regardless, my best to you and thank you for sharing.
Linda C. Boberg
Wednesday 22nd of May 2019
I was on Anastrasole for over 5 years. I was lucky - I thought. No bone aches (I thought) and nothing else. Recently, I was googling for information about my new mets meds and came across information about Anastrozole and stroke. No one every told me that! I had a stroke a year ago and NO ONE said a thing. Why don't they tell you that? My neurologist and cardiologist are looking for a reason as to why I had a stroke and there is none. turns out that for 30% of all stroke patients, there is no concrete explanation. It just happened. I thought that was me until I read the articles. Now I'm on new meds and I wonder what they'll do? And the kicker is that if I don't take these meds, I only get worse. FML.
Nancy
Thursday 23rd of May 2019
Linda, My goodness, I didn't know about the increased risk for a stroke. There are so many unknowns...Hopefully, you're new meds will do their jobs and not be too harsh. Thank you for reading and commenting too.
Vicki
Thursday 23rd of May 2019
I also had a stroke this year after more than 6 yrs on Arimidex. The stroke doctor told me it was probably caused by the Arimidex. I stopped taking it, and my oncologist agreed that was best. I'm 65. I filled out the survey as well. Thanks for posting it.
Tarzangela
Wednesday 22nd of May 2019
Went there, did it, done. Completed. And yes, it felt good to have my say with hopes it will help in some way. Thank you Dr. Attai and Nancy! Can I do the survey again and again? I have so much to add to what I have already said! (yup, you know it, I rambled on and on when asked what I thought!) There is a lot of fallout during endocrine therapy, a lot of it is hair, but a lot of it is the side effects of the side effects. Within 6 weeks of starting the pill, I had symptoms of carpal tunnel (never, never had it before and had been post menopausal for over 7 years). My oncologist adamantly opposed my notion that it was a side effect. Even though the paper handout he had given me 3 months prior, had carpal tunnel as one of the more rare side effects. I had a severe case within 8 months (mind blowing pain) and ended up with surgery to the right hand. Within another 6 months, I needed a cortisone shot in the right again for De Quervains and have had 2 more cortisone shots in my left wrist for De Quervains. I am currently trying to hold out as long as I can before I get a 3rd shot in my left wrist........again. The Doc might allow one more after that, but the next step will be another surgery. Who has time for that? I know I don't............ Two months ago, my regular Doc won the battle to get me to take a cholesterol lowering med. Yup, my cholesterol had skyrocketed after taking the pill ( the drug maker admits this is another effect and now we should be monitoring cholesterol levels) So now there are side effects from the side effects. The statin is now multiplying the arthralgia, muscle aches, headaches, fatigue and weight gain. I look at my pee every time to make sure it is the right color now. Don't need kidney failure to ruin my day. Don't need diabetes, another possible side effect of the side effect. I'm tired of being tired. I'm tired of my bones grinding and worrying about them breaking. I'm tired of hurting. I'm tired of my left hip and thigh bone hurting. I'm tired of worrying about mets. I'm tired of my wrist hurting, especially if I jam it, which happens many times in a day.....and night. I'm tired of opening up the pillbox every night, dumping them in my hand and snarling at them while considering throwing them in the trash. I'm just soooo tired, but I don't sleep too good or too much. Which makes me tired. I'm tired of a lot of other things, things I won't mention............use your imagination ladies...... ..............I am now tired of bitching about being tired now.............. I'd better go to bed .......and hope to get some decent sleep tonight.............. Thanks for the survey. Thanks for letting me rant...............I feel better now.......:)..... zzzzzz
Nancy
Thursday 23rd of May 2019
Tarzangela, Thank you for completing the survey. Sorry you've had so many issues. You know me, I maintain that a good rant now and then is good for a person. :) Hope you go some sleep!
Deanna J. Attai MD
Wednesday 22nd of May 2019
Thank you Nancy for taking the survey and for sharing the information with your readers! We are trying to have as many voices counted as possible, and we appreciate your support.
Nancy
Thursday 23rd of May 2019
Deanna, You're very welcome. Thank YOU (and the others) for putting this survey together and for wanting to hear about issues that so many women (and men) taking these drugs are experiencing. Hope the survey brings good results for us all.