A Drug Holiday
About three weeks ago, I made a pretty radical decision: I decided to take a “drug holiday” from Tamoxifen.
As you may recall, I was taking Tamoxifen because it is the typically-prescribed endocrine (anti-estrogen) therapy for hormone receptor-positive breast cancer in pre-menopausal women (which describes me to a “T”). The net-net is that Tamoxifen has been shown to reduce the chance of the original breast cancer returning and also helps prevent the development of new cancers in the other breast or elsewhere.
Side effects include: bone pain; constipation; coughing; hot flashes; muscle pain; nausea; tiredness; vaginal discharge; weight loss. As was the case with each and every one of my treatments, I had EVERY side effect…EXCEPT the weight loss. In fact, I’ve GAINED a good 8+ lbs. Go figure.
My biggest, most troublesome issues are/were the hot flashes and fatigue (not to mention the blow to my ego of having to let out my pants!). I had four to five BIG, drench-filled, disabling hot flashes almost every hour, day and night. The hot flashes resulted in an inability to think, sleep or function with any remote sense of efficacy. And since beginning Tamoxifen, all day, everyday, I have felt like a sack of potatoes tied to my sofa, yet unable to sleep.
So, basically, I haven’t slept in a year and a half. …and, for the record, I’m a DISASTER without sleep.
After 6 months on the drug, I had a bleary eyed conversation with my Oncologist about whether or not I really needed to take Tamoxifen. As you may recall, I’ve never been one to sit on the sidelines and do as prescribed without asking the tough questions, e.g., When is enough enough?
During an appointment with my doctor when I was asking this very question, he suggested that we use Adjuvant Online to assess whether or not Tamoxifen is right for me.
According to it’s website, the purpose of Adjuvant is to help (cancer) health professionals and patients discuss the risks and benefits of getting additional therapy (adjuvant therapy: usually chemotherapy, hormone therapy, or both) after surgery. These estimates (including the potential for recurrence and mortality) are based on information entered about individual patients and their tumors (for example, patient age, tumor size, nodal involvement, histologic grade, etc.) These estimates are then provided on printed sheets in simple graphical and text formats to be used in consultations.
So, we put in every bit of my data and Adjuvant estimated that the likelihood that Tamoxifen would prevent mortality or relapse within the next five years is 2%. WTF? That’s IT? This means that there is a 98% chance that without taking Tamoxifen, I would not have a recurrence. It was quite stunning.
You might say, “But isn’t 2% worth it?” My answer is no, not really (that’s how debilitated I have felt). As you may recall, because of my horrific reactions to chemotherapy, I stopped my chemotherapy before finishing my prescribed amount.
My doctor said that right now, in order to prevent a recurrence, I need to focus on being as healthy as I can possibly be…and this includes sleeping. He said that prolonged sleep deprivation has the potential to contribute to a cancer recurrence (he didn’t give me a % on that). He then suggested that a “Drug Holiday” might be worth trying to see whether or not it is the Tamoxifen that is the culprit for all of the side effects or whether it is because late effects of chemo are lingering.
After getting a corroborating consulting opinion (ALWAYS a great idea when making a big decision, btw), the HOTY (a/k/a Husband of The Year) and I had a long discussion about whether or not this is the right course of action for me. We both agreed that the holiday is worth the 2% investment.
After agreeing to this holiday, my doctor reassured my decision by saying, “If you have a recurrence, it will NOT be because of this drug holiday.” His reassurance was a Silver Lining to a difficult decision.
This situation further reiterates the need to have a true partnership with your physician(s). Having these discussions about your health is imperative. None of this is easy. Never has been. However, the Silver Lining is that there ARE options!
Hi Hollye,
I hope you are already feeling better. It sounds like a great decision. Good luck to you!
Thanks so much for your kind note, Carolyn!
im in such agreement with you hollee……..i hope many other women will read this…the best to you as always,carina
Thank you so very much, Carina! Best wishes.
I WISH I HAD YOUR COURAGE.I TOO, SUFFER FROM TERRRIBLE BONE PAIN, EXHAUSTION, FATIGUE ETC ETC..BUT I AM TERRIFIED OF THE ALTERNATIVE SO I CONTINUE TAKING TAMOXIFEN…UNTIL I CAN'T BEAR IT ANY MORE…BEST OF LUCK.PLEASE KEEP US UPDATED<3
Dear Grace, I believe that it is important to do what is best for YOU. Please try to get the rest and nutrition that your body needs to be as strong as possible. Sending my best wishes to you! Hollye
Dear Hollye, I am just a year out from initial diagnosis, lumpectomy, chemo and radiation. started Tamoxifen in Jan and am at the end of my rope. I have 2 girls who will be moving 9 and 14 hours away, one for under grad and one for grad studies. so the next few weeks will be emotionally and physically exhausting. I have decided as of today to take a tamoxifen holiday. Docs office said it was fine to do short term. So I will try it for a few weeks and then go back on when everyone is settled. I don’t really have much joint or bone pain, but the hot flashes and night sweats are killing me, exacerbated by the hot weather. More importantly, I am an emotional mess, prone to crying jags and breakdowns. I just want to be “normal” for a while..
My support group and I shared your beautiful book … And silver linings is an expression I’ve used often on this crazy journey. time to start looking for some again.
I would like to know how things stand with you 3 years since these posts I’ve just read. Hopefully you are doing magnificently!!!!
Best wishes.
Andrea Douglas
Ottawa, Canada
As we've talked in the past, you are your own best advocate, and so glad that your oncologist and HOTY are there to help examine all the options (and overcome decision fatigue). I will have my first follow-up with the oncologist on Wednesday, and have the same sense of trepidation that you described in a post from last year. I'll be bringing my "trade space" to talk about what is next with regard to endocrine therapy.
I made the decision to and had surgery last week for oophorectomy/hysterectomy. I wanted to take estrogen out of the equation, and while I was there, remove all other reproductive cancer risks, although I did not have the BRCA gene. I think my recent change from pre-menopausal to post-menopausal opens up a few more options for endocrine tx, either Tamoxifen or one of the AIs. I'm also bringing bisphosphonates into the discussion, and finally, looking to enroll in the NeuVax trial. Although the trial is double blind, maybe I'd be one to recieve the vaccine, and it will only add to the prevention regimen.
What your post reminds me is that there is a cost to each decision, and while my trade space might enumerate the side effects, and they will be weighed against the hammer of "keeping cancer from returning", it won't be until I actually live with them that I can make a true measure. And yes, there is a SL, because we still have options in case the life quality of what those treatments bring is too high a cost.
Kudos to you for "keep on keeping on" and your inspiring words.
-Linda
I couldn't agree more, Linda. We are indeed our own best advocate. Having backup in the form of the HOTY and outstanding doctors certainly does help with the decision fatigue that I had, which was also a MAJOR Silver Lining. Your words mean so very much to me! All of my best wishes to you!
I LOVE your doctor for his reassurance!
Me too, Sherri! Thanks!
The drug sounds incredibly difficult to tolerate and has impacted your life an a very negative way….. for 2%!!!! So happy to see you inquired and have written about your inquiry for others going through the same misery!!!
I wholeheartedly agree with your decision, Hollye! You absolutely need your sleep…..your quality of life back. All the other things you are doing – nutritionally & exercise wise also strengthen to your immune system, as you have so often said 🙂 The absence of all the side effects will also help you with stress reduction, sleep and your own personal happiness – these are immune boosters too! I'm certain you are already be aware of the studies which have shown taking 5000 units of Vitamin D per day can decrease breast cancer recurrence between 25 to 45% depending on the diagnosis… so it can't hurt no matter what! No side effects! You get a lot of sunshine in southern California so it might be worth having your vitamin D level tested (150 is normal) if you haven't already done so. Ease up on the sunscreen for about 20 minutes per day (SS too). I'm so happy for you!! Your empowerment empowers us too!
Thanks (as always!) for your note, Kim. Pretty amazing to thing of the potential power of Vitamin D (MUCH higher than my 2% efficacy of Tamoxifen!).
Thank you, again!
Hi Holley,
I had the same BF – but I am post menopausal. I started on Tamoxofen – same uncomfortable
reaction. Major hip joint pain. Doctor switched me to Letrozole. Night and day – excepte chills to the bone – like a hot flash only opposite. So I just came off a HOLIDAY as well. The chills went
away within 3 days. I had all my energy back and then some because my lifestyle is so darn healthy.
I am now back on so we can decide and discuss. In the meantime I am ready and researching as
much as I can about all these drugs. I am shocked at the low percentage as you point out and yes
WTF! I meet with my doc next week to continue the dialog and will let you know if you are interested. You are going to love your Holiday. And well deserved.
All my best, Betsy
Wow, Betsy. So amazing to think about all of these side effects with which we contend. Please let me know how your meeting goes with your physician. Take good care! Hollye
Hollye- I had the same awful side effects on Tamoxifen plus leg and foot cramping that would contort my feet into a claw position. It is awful to think that women actually force themselves to live that way for 5 years for what amounts in many cases to a 1-2% benefit. I stopped taking Tamoxifen after 5 1/2 months. Shortly after going off it, all those symptoms disappeared. Last month at my oncology check up we did NEWadjuvant online which now includes her2+ status and Herceptin therapy (which we did because I had/did both). He said in my case it only offered a 1% benefit and that going off it was the right choice for me. That being said, I go in for an excisional biopsy of a mass found above (not under) my mastectomy scar the day after tomorrow. Evidently if it is a recurrence it is more likely the her2+ aggression that caused it, and not lack of Tamoxifen. Tamoxifen only blocks estrogen from breast tissue (it doesn't stop your body from producing estrogen like the Aromatase Inhibitors do) and theoretically there is no more breast tissue there so I still must believe I have done the right thing. Did your onco never do the adjuvantonline with you previously or did you just agree you would give Tamoxifen a try? I have heard of so many cases where women want that last and final 2% in their favor and they'll take it at any cost. Quality of life has to account for something and I hope you are able to find that again. Best to you!
Thanks for your note, Koryn. I had the SAME foot CRAMPS. Oh my gosh. I didn't realize that these were additional side effects. I would pop potassium like it was going out of style without any relief. Those cramps hurt SO MUCH!!!
I didn't actually do the adjuvant online prior to my decision-making. I figured that it was worth a try and I would see how I fared (knowing lots of women who handle it just fine).
I am a firm believer that everyone has to make the decision that is right for him/her. The key is that it is a personal decision and that options need to be weighed.
All my best to you as well.
Please let me know how your doctor's appointment goes!
Hollye
so happy for you ! i am on arimidex and having all the same side effects as you. I am going to schedule an appt with my dr and see what he thinks about a holiday for me ! love your blog !
Thank you for your note, Jeanne. Please let me know how your meeting goes! Take good care! Hollye
Good for you!!! I hate taking that drug- lots of side-effects- and I've gained about 8 lbs as well. Maybe I'll check out that survey. Take care.
You take care as well, Amy! All my best!
Wow! I'll definitely have a talk with my oncologist! I have just finished my 5 years with Tamoxifen, and guess what? All the aches and pains that I contributed to the effects of chemo or old age went away! Every single one of them! Now I'm starting 5 years of Femara, and the pain is worse than before, along with tiredness and I could swear I'm grouchier! (Haven't asked my family to confirm that!) I've been wondering about the benefit of Femara when I can't drag myself off the couch to exercise!
How 'bout that, Linda? Amazing! Isn't the feeling of grouchiness just awful? I'm sending my very best wishes to you! Please take good care!
OMGosh!! Thank you so much for writing this!!! I, too, am taking a 'drug holiday'. I was taking Femara…a medicine for those of us with hormone receptor positive breast cancer…but for postmenapausal women. There are 3 different anti-hormone medications for post-menapausal women and I have tried all 3 of them…all causing the same results….major bone pain, hot flashes, night sweats…etc, etc, etc.
Have been off all meds for 3 weeks now and I feel so much better!! Though I still have hot flashes at times and night sweats, I no longer have the debilitating bone pain! I will definitely ask my oncologist about the Adjuvant survey to see if I,too, am in the 2% column. If, so, I am going on permenant 'drug holiday'!
Thank you so much!!!
Barbara
Wow, Barbara. Good for you! I'll be interested to hear what your doctor has to say. Please take good care!
Dear Hollye,
Great decision! I had my MRI last week, nothing new and no recurrence!!! Yay! Especially since I had stopped taking adjuvant after the Femara caused two posterior vitreous detachments (known side effect but not by anyone at this Cancer Center) which is when the vitreous in the eye liquifies prematurely and pulls away from the retina, tugging on said retina, so I was left with constant flashing lights and trying to see through a big jelly mess with floaters so great in number as to be uncountable. And, the kicker, rendering me unable to use an ophthalmoscope which is kind of essential in Neurology. So now I have to get a colleague to evaluate the fundi.
Not being a quitter I went on Toremifene, the sibling of Tamoxifen, and I had the worst personal itch, which I handled, and then more than half my hair fell out. Back to the Femara, really not a quitter, only to be so incapacitated by fatigue, bone and joint pain as to make life intolerable, to say nothing of going to work everyday.
My result with Adjuvant Online wasn't as calming as 2%, and I am glad for you, what great odds. But after discussing it with the three "oncs" surgery, medicine, and radiotherapy, I decided that I want quality above all, and I'll take my chances. I am still tired, I have to work four ten hour days in clinic so I can have Wednesday off, and you know it still isn't a forty hour week. I don't think I will ever be able to work five days straight again, but I'm so much better than I was. The hot flashes are mild, but omnipresent if I don't take clonidine (which made my mouth so dry I thought I would lose my teeth). But my joints are better and my bones aches aren't too bad, and as I remind myself I'm 58, and I have worked hard all my life, a few aches are to be expected.
So… I'm doing the same as you for now, if I get a recurrence then I'll have to change my plan, said calmly but you know I'm fearful of recurrence, but I have to feel like myself, as much as I can. And I want quality of life, not misery. I see others who do fine, but these meds were ruinous for me.
Again, I'm right there with you on this decision. And we are going to enjoy life.
Best wishes, dear Hollye,
Anne
Dear Anne,
Thanks for your note! FANTASTIC NEWS about your MRI! YIPPPEEEEE! I believe that quality of life goes a long way in preventing illness and other issues. The meds were ruinous (a great description) for me as well. And, yes, it's time to enjoy LIFE!
Best wishes to you too, Anne!
Hollye
I am going thru the Tamoxifen side effects myself so I know how you feel. I haven't slept a solid night for about a year now. I have also put on a few extra pounds.,hot flashes,night sweats,bone pain, nausea etc. I hope you feel bettersoon. I am anxiously waiting to here what happens once you are off the Tamoxifen.
Take care and feel better.
Thank you, Carol. Tamoxifen sure has been a doozy for me. The Silver Lining is that many people take it without any side effects. Sending my best wishes to you!
Bless you, I understand completely how you feel and believe you have made the right choice. Live life, get some wonderful sleep (wishing you sweet dreams) and carpe diem! Prayers, light and good wishes to you and your beautiful family.
Thank you so much for your kind note!
I think the Tamoxifen is the drug that made my toenails fall out. I am so glad to be done with that drug.
I'M so glad that you're done with the drug as well, Mary!
I have been on femara (ovaries removed) for 2 years. I break down frequently because the side effects are so difficult to manage. Anything from physical pain, nausea, and mental exhaustion (forgetfullness and confusion). So frustrating that the FBC, surgeries, chemo, and radiation was not the end. I rely heavily on statistics, and weighing the benefit/risk relationship. I will be looking into this. I also felt that your oncologist's reassurance with taking a holiday will NOT cause a recurrance. SL! Thank You
Thanks so much for your note, Alisa. I couldn't agree more that the end doesn't come, even with all of the FBC treatment. Sending my very best wishes to you.
Dear Hollye, Good luck with your drug holiday. I have so many of the side effects decribed , it's not funny. I don't see my oncologist , again, until July. In the meantime my recon is at a halt, due to a wound on the radiated side that would not close. I just had surgery to have it stitched close. I am so tired of living my life according to cancer. I want my life back. I try daily to push my limits everyday. I can't wait to be back at full tilt. I guess baby steps are the way to go. I just keep on reaching for the other side. Please report how your new regime goes. I'll be very interested to see if something like that would be beneficial for me , also. Thanks, and good luck.
Thank you for your note, Patti. I am complete agreement about being tired of being reactive to FBC. Please take good care of yourself and acknowledge that full tilt takes a long time…as in years for many people (myself included!). Baby steps are indeed the way to go. I will absolutely report how things are going. Please take good care! Hollye
Dear Hollye
I have written to you about this post, regarding the break from these medications, I am not the most savvy with the computer , I did not hear back from you, my fault I am sure. I know you are busy.My message to you was I am having the worst side effects from Exemestane so I have taken myself off of this,I have not yet told my Dr.
yes I am post menopausal ,and I had a Bilateral masectomy , chemo, radiatiation, My oncologist has tried me allso on Anastrapole, but that was allso horrible, have you any info on these drugs? and how can one find out if they are FDA approved? I have loved the SL and wish you love and support with your decision to take a holiday, all the best Joyce
Dear Joyce,
Thank you for your comment. I did indeed write back…so sorry you didn't receive it.
I highly, highly suggest talking with your doctor (and getting a corroborating opinion) if you decided to change medications. I could never advise changing medications without the consultation of your doctor. This is super important.
If for some reason you and your oncologist (or any other doctor for that matter) are at an impasse, you can either get a 2nd opinion or even change doctors if you need to.
Here is the FDA link to find out if a drug is approved: http://www.accessdata.fda.gov/scripts/cder/drugsa…
I would really encourage you to talk with your doctor.
Wishing you all the best!
Hollye
Hi Hollye,
Thank you for this post. I was diagnosed with a similar diagnosis to you at age 28 and finished 5 years of tamoxifen a year ago. Even now, a year after stopping it, I still have daily joint and bone and tendon pain and my body has been quite weakened by the 5 years on the drug. My oncologist insisted I stay on it the full term and that maybe these side effects are cumulative from the tam and the 3 months of taxol chemo that I did. Any suggestions as to how to treat the persistent pain? I found that eating a gluten-free mostly vegan diet and caffeine and alcohol free life helps, and of course moderate constant exercise. Any thoughts appreciated! Thanks for all of your great posts! 🙂
Absolutely, Alexa. Yes, the diet and exercise very much help. I also found that acupuncture and reflexology helped as well.
Thank you for writing and best wishes. Please stay in touch!
Hollye
So what happened?
Hi Alexa,
Thanks for asking. It turns out that I stayed off of Tamoxifen. It was the right decision for me, but certainly not one that I would recommend without a great deal of consultation.
Thank you again!
Currently on a drug holiday from my breast cancer med. I feel less fatigued and am starting to have more energy to do the things I used to do. I also am sleeping better. I am not as achy but have gotten a bad cold. May be unrelated. My mood seems better.
So glad to hear, Patricia. Sending my best wishes!