Starting/declining hormone therapy Nov, Dec, Jan 2018
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Hey Lavenderlee (and hugs to Spoonie!),
I started tamoxifen on 12/10 and just stopped on 12/26-due to my side effects. The Onco said to stop taking it until they see me-on 1/24. I’ve always been a healthy person...hiking, running, boot camp classes-lots of fruits and veggies. I’ve had a high tolerance for pain and I’m not a complainer
I like to go with the flow in life.This is just what happened to ME on tamoxifen and obviously we all have such different journeys 💕:
About 5 days after starting it I had some minor SE’s (headache, hot flashes/night sweats, itchy, dry eyes). But my NECK and back felt like a steel board that I couldn’t move-I could barely turn my head the tiniest bit. I called the Onco and they said try and stay on it for two weeks-it should get better. I kept taking it and I DID get better by two weeks. Just a tiny tightness in my neck, on the right side.
I hate to say it- but on 12/26-out of the blue-my neck/back pain came back worse than it was before. Super extreme pain. It hurts to walk, and I can barely turn my head-I’m in bed with a heating pad right now. Even though I stopped two days ago-my neck and back still have shooting pains and are really tight (seized up kind of tight).
I’m hoping with lots of water and heat-this pain will go away by today or tomorrow? I’m interested to see what the next steps will be-but I’m pretty sure I won’t be returning to tamoxifen. I’m 47, just for reference.
I wish you strength and luck, Lavenderlee...and all you other gals! Please feel free to PM me, if you have other questions! Sorry for the long post!
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Hi All,
I was in March chemo group and Nov rads. Started tamoxifen beginning of Dec. Unfortunately I started spotting this week after 7 months of no periods which they assumed to be menopause. They said at my age (50) chemo would put me in permanent menopause. So now MO told me to stop taking tamoxifen until they can do various tests at my gyn appt on 1/10. I'm not really worried that they'll find something alarming since the spotting stopped literally day after I stopped taking the med. Thinking I'm just one of those cases where it affected endometrial lining very quickly, (increases estrogen in that part of the body ). Also noticed a lot more discharge that was clear right after I first started taking it. This really didn't bother me since I was more worried about dryness and sexual side effects from menopause. Sorry if this is TMI. I'm just bummed because I really don't want to take an aromatase inhibitor and have like no estrogen in my body, I was really ok with taking the tamoxifen, now IDK, anyone heard of this?
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Pebbles- I am going to look at those links when I get a chance. That is very interesting about doing a slow start. I am with you, I had the positive nodes, also with extranodal extension. So I feel like I need to give it a try. Honestly I am really nervous about it. I don't have a follow up with my MO until July. Seems like others are having a sooner follow up after starting the tamoxifen. All my MO said was start "after rads". I plan to give myself a chance to heal from the rads though, Maybe I should put in a call to his nurse and find out exactly how long it would be safe for me to wait.
Sugarmaple, so sorry you had such bad SE right away, I hope your pain lets up soon.
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Hi Dani - yes we have very similar cases! Although interesting that for me grade 2, tumor 1.7cm and 2 nodes they told me I'm stage 2A, and it looked like you're stage 1B with grade 2, tumor 4cm and 2 nodes? So weird this staging thing. I heard the pathologists actually graded me at stage 1 and then the surgeon "corrected" them and made them amend to stage 2. Weird. It's early stage, that's all that counts!
I'm really nervous about it too, but trying to stay positive. We don't know until we try so we will see. Maybe you can pro-actively schedule an appointment with your MO earlier? Frankly I'm envious of you, I'm one of those who wants less follow-ups. My MO wants to see me again around 4-6 weeks after starting tamoxifen just to make sure I'm tolerating it OK, and every 3 months after that.
The one appointment I pro-actively made myself was with my PCP (Primary Care Provider) in order to establish a bunch of baselines like the liver enzyme panel and so on before I start on tamoxifen. Even though I want less visits, I'm really glad I made the appointment with my PCP as I have my baselines that I wanted now which took just one blood test that gave me my AST, liver function panel, albumin, lipid panel, hemoglobin A1C and CBC (complete blood count). Also my PCP recommended an ultrasound to check my uterine lining, which as I'm doing a mild IVF stim to get/preserve eggs, I got done. The PCP was interestingly enough much more in favor of measuring all my baselines so I can track myself on this tamoxifen journey than the oncologist, who didn't recommend any baseline testing but supported me wanting to do it. I think someone said earlier on this thread that we really have to be our own advocates and that's true!
Salamandra - that would be pretty awesome if suddenly there was an influx of poms being adopted in 2019 thanks to Domino! :-P I'm so glad you're one that has had tolerable side effects starting tamoxifen. It's helpful to hear, and also nice to know it's smooth so far for you!
sugarmaple - enjoy the break and thank you for sharing your experience. Keep us posted on your options, would you do an AI then or nothing at all?
mLghtn - not TMI at all, we're all sharing! I found a couple threads where people had spotting with tamoxifen, not sure if it helps or it's the same thing but here they are: https://forum.breastcancercare.org.uk/t5/Hormone-t... and https://community.breastcancer.org/forum/78/topics... - regarding an AI, they actually have me take Letrozole (aka Femara) while I'm on the IVF stims thing (there is actually a breast cancer protocol, I guess it's common for women like me who were never too concerned about having kids to suddenly want to preserve the option as soon as we hear that option might be taken away with treatment)... so while I think it's a low dose compared to treatment, it's 5mg a day and I haven't had any side effects while I'm on it. That said, I'm on it super short term, usually no more than 10 days. I just started it again last night with this final round my husband and I are going to do on the egg retrieval.
Wised - I've always thought of Domino as a mini-husky, but now that you point it out, you're right, could be a min-chow too! Especially Kit Kat who had a little bear cub face. Here's a flashback Friday image of Domino and little Kit Kat (who crossed the rainbow bridge earlier this year) showing how sharing is caring:
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I started Exemestane today as my third Aromatase Inhibitor. Severe side effects from Anastrozole and Letrozole. I read somewhere that Exemestane is a irreversible AI. Does anyone know if the side effects from Exemestane are reversible after you stop taking it and how long does it take for the side effects to go away. Thanks for any help,
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Hey PebblesV!
Cute photos of your dogs! I’m open to suggestions from my Oncologist-I’ll see her on 1/24...we’ll see what she thinks. I definitely could not hang with the tamoxifen-I’m still hurting this evening-ugh
Take good care out there-and thank all of you gals for your wisdom and encouragement!
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I started Tamoxifen beginning of October, stopped end of November because of brain fog and dizziness where I couldn't even drive. I teach and I couldn't remember my student's names. I tried a different manufacturer and lower dose and it didn't cause dizziness or stupids, but I couldn't go up and down the school stairs because of joint pain, and my eyesight sucked. I couldn't go on walks or exercise or do yoga.
So take a pill that will reduce recurrence to 3% and be miserable, deal with 6% recurrence and be able to exercise reducing it to 4%. I'm off everything and am ducking phone calls from my oncologist.
Crystal ball, where art thou?
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Hi everyone...I wish everyone could tolerate anti hormone treatment. I do not deny its effectiveness in reducing recurrence rates. However only 40-50 percent of us complete the recommended length of treatment due to side effects. This is the reason I feel we need better options. I also believe more of us would stay on it if our docs would be open to discussing side effects and how to cope with them. I'm not aware of any permanent side effects from Tamoxifen but you can have permanent joint damage from aromatase inhibitors. I would also like to add that weight loss and exercise have about the same rate of reducing recurrence as anti hormone treatment. Obviously being able to do both would be optimal but its just not always feasible. Good luck to all navigating this complicated disease.
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Checking in from Montana. I've been on vacation since 12/22 and I must say at least for now I'm not thinking about the anastrozole SEs really at all. Maybe it's being in a different setting but I also haven't exercised the last week but I almost forget to take my pill every day because it's just not taking up much of my brain space. That's good!
Just re: timing and dosage, I finished rads 10/4 and started the AI 11/11. I took it every other day for three weeks. Not sure if it helped but I only noticed a little stiffness and maybe a few more headaches.
I feel like I've read that some women's SEs get better over time but some women get them worse after the first 3-4 months. Anyone else heard of this?
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I've read many experiences on this forum alone that confirm what you mentioned. Some seem to get used to the medication over time but others have more of a negative long term effect. I've been on anastrozole since April, 2018 -- so not very long. So far I've not experienced any joint / muscle pain or hot flashes. I'll get a one year dexa in April and I'm very interested to see the effect on my bones, if any. That will be a game changer for me if there is a negative effect, but I'm not focusing on that until I see what's what! I think, like any medication, everyone's body, metabolism, and disease handles it individually.
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DiagnosisDisruption-you said it! I wish I had a crystal ball, too...but I do know I’m not going back on tamoxifen. The Onco nurse said I could ‘hold’ it until my new appt. We’ll see what other options are out there on my next appointment (1/14/19).
Let’s hope we all have a magical, healthy 2019!
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Hey all, just jumping in on the discussion here. I'm sure several of us are on similar threads. After deciding definitively to refuse chemo, the next step is Tamoxifen. Will be reading all of your posts & jotting down questions to take to my MO on Friday. Now that I'm officially NED I may even seek a second opinion. Would love to manage risk factors (estrogen imbalance) with lifestyle changes.
sugarmaple, I totally get why you stopped hormonal treatment... pain, change in quality of life are at the top of my concerns. Not to mention long term, permanent effects.
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Good evening, so question, is the alternative to Lupron to have your ovaries removed? Then would you just be on the AI? I researched so much regarding surgery, chemo, and radiation that I'm a lot less educated on these points. I have the meeting to discuss side effects, process, etc. on Wednesday, but also scheduled the first lupron shot for that day. As we've all learned, you don't know what side effects you'll personally get until you start, so that's where I am.
I have 3 rads left - 3 boots. My skin is red and very dark in spots but holding up. And Advil is helping the soreness. Still working out and thus while I'm generally tired, the fatigue is not too bad. I plan to work from home the next three weeks to keep ahead of it. It's worked so far.
MDRR thanks for weighing in, it's very helpful.
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Pebbles, I too was confused on the staging. Pre op my BS was saying she thought I was stage 2. She said of course it is the pathological stage that matters. She explained to me that the staging process had recently changed and with those changes it put me at stage 1b. As you said, still early stage and that is what matters!
My cancer seemed to hover right on the line for a lot of my treatment decisions. We had trouble nailing down if I was in fact a candidate for lumpectomy v mastectomy. Then after surgery and my positive nodes it came down to full axillary dissection v chest wall radiation. She said she didn’t do lumpectomy on 5 cm and above with my breast size. Also that 5cm and above gets radiation even with mastectomy. My final path was 4.8 cm. So I was grateful for a diligent tumor board!
Did they discuss full axillary dissection with you or was it just radiation as the treatment option for your positive nodes?
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Hi Everyone,
I finished radiation on 12/11/18. My oncologist suggested starting hormone therapy on New Year's Day, so I am close to the start date. I will be taking Letrozole. I am nervous about tolerating the side effects. Looking forward to getting to know you all and supporting each other though this thread. Glad radiation is done. During radiation I was working reduced days with a sub for the afternoon . Looking forward to getting back to full-time with my kindergarten class. No better medicine than spending your day with 17 five and six year olds when you are feeling worried or sick!!! Thanks for all the great info above. I am going to ask about the baseline panel for sure.
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Staging, etc...Dani, I have lobular cancer too and my original mass size was said to be 1.6 . Then at some point it was 3.7!! I asked about the discrepancy and was told that lobular is most always found to be much bigger than what they originally see. It's elusive and the cancer cells can look very normal which is why, when my surgeon sent a sample to be x-rayed while I was still in the OR, it came back clear. However, the path report came back to show that the margins were not clear and thus I needed a second surgery. My MO at first told me my staging number for prognosis was 1B, then changed it to 2A, due to new guidelines.
Question-my ER is listed at greater than 90. Is it good or bad to have so much estrogen? No one has mentioned my ER number. I did take HRT and that probably caused some of the problem. It sounds like everyone gets the same dosage for an AI, regardless of their number. That seems strange to me.
It seems like most MOs start their post menopausal patients off with Arimidex. I know there is a list of side effects for each AI somewhere on this site. I wonder if Arimidex is supposed to be more easily tolerated than other kinds of AI,or if there is some other reason that it is often the first drug prescribed.
Welcome to the new folks! Kinderkel, I taught kindergarten for a while, but spent most of my years in first grade. You are right that spending the day with young children is the best medicine and doesn't give you any time to ponder. Can you go back to full time gradually, like maybe three full days and two half days? I would be exhausted. Good luck for an easy time with Letrozole.
I appreciate reading comments from everyone who is sharing. It sure is helping me to formulate a list of questions for my MO. Sending healing thoughts to everyone who is struggling.
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I sure didn’t know I was going to have such extreme SE’s with tamoxifen! It does seem strange that everyone is prescribed the same dosage DAILY no matter their weight or tolerance levels. It was pretty scary to feel so immobilized by my neck and back muscles becoming a wall of pain.
I’ve always been a bit of a nature girl-maybe my body just said, “no way” to the T.
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Hi all, I’m new to this thread. I started tamoxifen on December 1st ( a month after I finished chemo). So far, I’ve had no side effects at all. I take it in the evening, along with melatonin. One concern I have is how little information I was given about the meds, particularly on what can make cancer tamoxifen-resistant (low melatonin production) or can make tamoxifen ineffective (taking benedryl, SSRIs, eating grapefruit, using citrus peel in foods. So, I’ve been doing research on my own and have put blackout curtains in my room and take melatonin at night, and no longer take benedryl for allergies. Also, I read that daily aspirin can help boost tamoxifen. I’ll have to ask the MO about liver issues
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Kinderkel.....I will be starting letrozole on New Year's Day too..... Not looking forward to it but my family wants me to at least try it.....
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Sugarmaple, I'd sure like to see some reputable citations for the claims you posted about things that make a person Tamoxifen-resistant. It's not in the paperwork that came with the pills. I'm very particular about what I consider a reputable source.
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Alice, I think you meant that question for me.
An NIH article about melatonin and tamoxifen-resistance here: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4119539/
And a more user-friendly article: https://www.sciencedaily.com/releases/2014/07/140725080408.htm
This BCO site includes an article that discusses which meds inhibit the CYP2D6 enzyme, necessary for tamoxifen to work (including diphenhydramine and SSRIs): https://www.breastcancer.org/treatment/hormonal/serms/tamoxifen
And an NIH article specifically addressing SSRIs: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2794560/
This article talks about the research on low-dose aspirin and it's positive interaction with tamoxifen: https://www.medicalnewstoday.com/articles/259480.php
This drug fact sheet addresses grapefruit and tamoxifen: http://www.bccancer.bc.ca/drug-database-site/Drug%20Index/Tamoxifen_monograph.pdf
And Tangeretin (found in tangerine and other citrus peels): https://academic.oup.com/jnci/article/91/4/354/2543934
And finally, just an interesting article about nutrition and tamoxifen: https://www.oncologynutrition.org/erfc/hot-topics/soy-foods-diet-and-tamoxifen/
Hope that helps!
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whew-thanks wanderweg! I was only talking about my own pretty dismal experience with tamoxifen
No science base-just ‘me’ base! 😊I appreciate the articles, too-interesting how everyone reacts differently (based on age, menopause, who knows what else?).
Happy Sunday all!
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Also, wanderweg-I’m so glad to hear you haven’t had any side effects on tamoxifen! Wishing you smooth sailing on it!
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Hello all, writing here after a long break. Great to see so many studies for tamoxifen. Though it was being considered for my treatment plan, finally MO said lupron + letrozole which I have started 2 weeks back. No major SEs yet. I have hot flashes and some pain in hips and thigh, but not sure if chemo effect is still continued. Does anyone know what works/ should be avoided for this harmonal treatment? Did not do much research on this as have been researching more on surgery that I will have in Jan. Any input is appreciated. Thanks!
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Wow these are great articles, thx wanderweg! You're like me and spoonie on the research. Going to read these when I get a chance!
Question on tamoxifen for all of us taking or going to take it - is anyone going to take it with the baby aspirin? We have one family friend who takes both and she hasn't had side effects. I talked to my onc and he said it wasn't needed daily but maybe when I travel to help avoid blood clots. Thoughts and experiences?
For those nervous about letrozole, I don't know if this counts or helps but I'm actually taking letrozole short term as part of IVF stims (5 mg/day) and went through one cycle where I took it for around 10 days and no SEs. Taking it again now but it's for the IVF and not bc treatment. Since I'm premenopausal I will be taking tamoxifen for bc treatment and can only hope for the best.
Sugarmaple - I noticed too that it's weird that we all have the same dose (20mg right?) for tamoxifen! I'm 5 ft. and frankly nervous that the dose that works for everyone else is too much for me. I did get the OK from my onc to ease into it - start at 10mg and work my way up to 20mg. Seems to be a bit one size fits all based on the studies they have today... I think they just haven't done a proper study on lower doses with IDC. They actually had one with 40mg vs 20mg: https://www.ncbi.nlm.nih.gov/m/pubmed/2658841/ - on 10mg I only found this so far: https://onlinelibrary.wiley.com/doi/full/10.1002/ijc.30254
LPlibrarygirl - My onc said it's good to be very ER positive because the hormone therapy usually targets estrogen so the treatment might be more effective if your estrogen is above 90.
And the staging happened to me too! They graded me stage 1 and my surgeon had them change it to stage 2. But weird in that when I look at the new guidelines, my case would technically qualify for stage 1 even with positive nodes (tumor less than 2cm at 1.7cm).
Dani - re: your question I did yes, after the positive sentinel nodes my surgeon wanted to do a full axillary node dissection. I declined it for two main reasons -
(1) she mentioned a 40% chance of lymphedema - this being my right arm and me being 43 who likes to swim, lift light weights and play tennis, this is a chance I was not willing to take for a “maybe”.Also someone here (dtad and others?) mentioned the benefit of exercise in reducing recurrence rates and I did not want to inhibit my ability to exercise. That said I knew radiation came with a 15% chance of lymphedema but everything is your own personal risk/benefit analysis and I was willing to take on that risk (15% vs 40%)
(2) I found a few studies and blogs that said those with 1-2 positive sentinel nodes and just did the sentinel node biopsy survived the same - actually slightly better - than those who did the full axillary node dissection. The researchers were surprised by these results and theorized it might be due to the sentinel group better being able to exercise and stay active. Anyways it gave me the stats to back up my decision - articles here: https://www.jwatch.org/na45030/2017/09/15/axillary-dissection-unnecessary-breast-cancer-patients and https://jamanetwork.com/journals/jama/article-abstract/2653737
This is part of why I went all in with the radiation and 30 sessions that treated my nodes too. I was more willing to do that than the surgery and just be positive that I could skate through with little to no SEs from radiation by being diligent about lotioning and still moving etc (which as you know from the rads thread I did!).
I think someone else said it on these boards and I agree - you really have to be your own advocate. The doctors are good people but they see tons of patients and no one is going to know your own individual case as much as you. We are living and breathing this, they see us for a 1/2 hour to an hour every now and then. So I've been researching tons about my own situation to help me decide what path to take.
It would sure be nice to have that crystal ball! I don't know what the outcome will be but I do know that I feel good about the path I've decided to take on this so that's all we can hope for, make the decisions that are right for us personally, try and get through with as little SEs as possible, deal with things as they come and change course if needed, and live for today.
This little Domino fluff (plus Tucker, but Domino is my special little one as you know while Tucker is my husband's top dog) helps with that:
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Rads is over and I rang the bell! My husband sent me this - I cried the whole treatment so did some of my techs. I feel great, aside from the celebratory hangover, just a little swollen and very pink breast.
Thank you all for the research. I have been reading and feel as though you can find information for both sides of the coin. The links below are from a site I stumbled across after looking up the fatty liver side effect mentioned earlier in this thread.
https://thetruthaboutcancer.com/truth-about-tamoxifen-part-2/
https://thetruthaboutcancer.com/tamoxifen-alternatives-estrogen-dominance-breast-cancer/
I am glad to hear that some of you seem to be doing so well with maintenance treatments. Loving all the Domino updates and pet updates - they definitely keep ya sane!
There is no such thing as TMI here, we need all the information we can get!
Sugarmaple, diagnosis disrupted, and others who have stopped I am sorry for the side effects getting to you. Thank you for sharing your experience.
I didn’t realize that the pill is a one size fits all treatment - that just seems a little off. Especially when you think about how different each cancer and patient really are.
I think I am going to do the Solomon Wickey Protocol (http://herbskillcancer.com/index.php/2016/01/03/my-experience-using-solomon-wickeys-protocol/) once a year, continue with regular exercise, and continue getting tested. My MO mentioned (very casually and quickly) that they have been able to detect cancer recurrences in blood panels.
Happy New Year to all!
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Thanks for the research articles! We can't be too vigilant in our own care.
Lavender, thanks for sharing the video! I didn't even have to do rads & it was inspiring to me. Congrats!
Pebbles, I just updated my info to reflect the new staging guidelines. According to that I'm stage 1A. But MO told me I was a stage 2a. ...Is it just that the new guidelines haven't been fully adopted yet? It may not be a biggie to her, but I feel more positive with stage 1 than 2... just me.
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Pebbles - I'm a believer in being my own advocate and doing all the research I can. And careful about sources, because I know there's a lot of bad info out there. I haven't asked my MO about it yet, but I went ahead and started on a daily baby aspirin. A couple of years ago when my husband had a stroke, the cardiologist at the hospital put him on baby aspirin and then told me that he tells everyone over 50 to take a daily baby aspirin! I didn't start then, but I have now!
Lavender - Yay for ringing the bell!! I think it's a great tradition. My understanding is that the truth about cancer site isn't highly regarded by scientists. https://sciencebasedmedicine.org/the-truth-about-c...
Oya - I loved that you updated with the new staging - anything that helps bring hope is a good thing!
It's an interesting question about the dosing of tamoxifen being the same regardless of weight. I know chemo gets dosed by weight. I'll have to ask my MO about that when I see him in February.
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Wow this thread is wonderfully busy!
Being positive, the pain in your hips and thighs might be appreciated with a daily dose off genetic Claritin.
Kinderkel, yeah another teacher! Teaching has a way of helping you to keep things in perspective, doesn't it?
Pebbles, good luck with your egg retrieval and IVF. Love me some Domino!
Lavender, congrats!
Feeble-minded apologies to anyone I didn't mention. Hugs to all!
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It's been a little over a week since I got Zoladex and started my anastrozole and I've not noticed anything out of the ordinary. In fact, I had zero hot flashes for the last two nights. I've only had one other night with no hot flashes for almost a year. That's certainly not what I was expecting but let's hope it holds!
Other than that, I'm healing up from rads still. My skin looks a lot better, but my pec is still pretty tight.
I hope everyone had/is having a good holiday season!
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