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Starting/declining hormone therapy Nov, Dec, Jan 2018

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  • BatyaD
    BatyaD Member Posts: 27
    edited February 2019

    I've been wanting a dog since I've been following this forum. They're all so cute and loving-looking. I'm staying far away from animal shelters. I already have me and my aging folks to take care of and I don't think I could properly manage a dog, too.

  • sugarmaple
    sugarmaple Member Posts: 40
    edited February 2019

    Hellooooo gals!

    Hey Pebbles! Having fur babies in our lives is so therapeutic, right? KitKat looked really special. Thank you for sharing that photo :)

    I hope all goes well with all of you this week. My MO actually gave me a prescription for 5 mg of tamoxifen (10 mg cut in half)-but I haven’t started it yet, due to some fun arm ‘cording and swelling’.

    Take care out there!


  • purplecat
    purplecat Member Posts: 227
    edited February 2019

    Hi all - just checking in after my 3-month followup with the surgical oncologist. I'd been pretty anxious about it, but it went well, and to my astonishment, my next appointment isn't for 6 months, and my next mammogram is in September, right at the time my annual mammogram would have been scheduled had this last one been normal. It's a little scary to think of waiting that long, and I'm pretty sure I'm going to be a bit of a wreck before those appointments. On the other hand, I'm really grateful to be in a category that doesn't require 3-month checkups.

    Pebbles, I'm alternating 10 and 20 mg doses this week, and it's going OK. Maybe a few more hot flashes. It felt scary to take the 20 for the first time. My first night at 20 mg I woke up with leg cramps, but I found some magnesium glycinate and they haven't returned, or, more accurately, I'm not having any more leg and foot cramps than I usually do in the midst of winter. I have had some weird dreams and moodiness, but on the other hand, considering what I"ve just been through, weird dreams and moodiness are probably normal with or without pharmaceuticals. My plans to spend February ramping up my exercise habits have gone completely asunder due to a series of winter storms that's been like something out of Laura Ingalls Wilder, but the month's not quite half over yet, so there is hope! Skritches to Domino and KitKat!


  • GreenHarbor
    GreenHarbor Member Posts: 187
    edited February 2019

    Purplecat, I saw my breast surgeon 2 weeks ago (5 months post op). After the appt was done, I realized how nervous I had been. I would have been due in May for my annual mammogram, but I will have it in June instead, and see my surgeon right after. I asked her if I would need mammos more often now and she said no, just once a year. I was a little surprised, honestly!I will continue getting 3D mammograms going forward, and will be getting full diagnostic ones on the cancer side. Extra squishing, yay!

  • beeline
    beeline Member Posts: 193
    edited February 2019

    Hi all, I don't see a topic for starting in Feb or later so thought I would just jump onto this thread. I am starting endocrine therapy sooner than expected because I had to quit chemo early due to peripheral neuropathy symptoms on taxol. Originally I wasn't going to start until after rads, but I also have a new MO since I am going onto a clinical trial... so lots of changes! I also thought I would be starting with OS+AI but it looks like tamoxifen is first up. It seems I am in the minority in being excited to start tamox (it surprised me, too!), but I think between having to stop chemo early and being so high risk I am just happy to feel like I am doing something to prevent recurrence. Which is not to say I'm not afraid of side effects, especially migraines which I've had connected to my cycle since I first got my period. They largely went away after AC stomped my ovaries, but have been edging back in recently. I have read that migraines can get worse or better on tamox. I am hoping to be in the lucky latter group! In any case, I started right in at 20mg last night before bed. I have a migraine and am quite nauseous this morning, but the weather is crazy so I might have felt this way anyway. Fingers crossed it gets better from here and the cancer stays away.

  • rljes
    rljes Member Posts: 499
    edited February 2019

    Hi everyone - I agree with Pebbles, re: dosage.  Why can't they test our Hormone Levels, then prescribe dosage that goes with our body type.  Its ridiculous for everyone to take the same dosage - someone that weighs 200lbs vs 115lbs should not be taking the same dosage. I guess that goes for all medications. When my Pharm MO said to take a break from Arimidex, I wonder how long of a break should I take?  And when I do start back, I think I will start at 1/2 dose for a month.  Last time full dose every other day for about 10 days, and that didn't work out so well.  Whats a couple months out of 5-10 years?  What does everyone think? 

  • salamandra
    salamandra Member Posts: 751
    edited February 2019

    OMG Domino in a raincoat! with a hood! !!!! Too cute for this shabby world!

    I'm still figuring out my stomach stuff. The endoscopy showed clear, which is good, though the doctors office says it still could be an acid reflux thing. They're having me double the omeprazole I'm taking, from once a day to twice a day, and see what impact that has, and let them know in a few weeks, and then figure out next steps from there.

    I'm going on a beach vacation over our February break, with some of my family. I'm excited. I haven't been on a beach vacation in SO long.

    In the mean time I have a LOT of work to do and I'm really tired and I'll have to see what I can do with it, and what I have to give up on and try to damage control.

    In the mean time, She Who Enjoys Leisure And Gets Impatient While I Work:

    image

  • LPLlibrarygirl
    LPLlibrarygirl Member Posts: 82
    edited February 2019

    Checking in from a winter wonderland in NH!

    rljes, about your dosage question-my MO said we all get to take the same dosage because we all have about the same blood volume and that's what the dosage is based on. Good luck when you restart your hormone therapy. Maybe check with your doc about when to start.

    Beeline, I hope you are feeling better and that your migraine was a random one and not related to tamoxifen. Good luck when you take the next dose tonight.

    I will be taking letrozole and it arrived in the mail yesterday. So far, no SEs have leaked out of the yet unopened bottle! I am working up my courage to start with half a pill soon. I am already having side effects from Naproxen (a little dizziness and nausea) and I have cut back from 1000mg to 500mg a day. I am hoping that in the next or so they will go away and that my shoulder pain will be kept at bay with the half dose of Naproxen. If I get side effects I want to know which drug is causing them!

    Take care everyone.

  • pebblesv
    pebblesv Member Posts: 486
    edited February 2019

    Purplecat - I think I might try what you are doing / did re: alternate days to work gradually up to the full 20mg dose. Thank you for sharing! Also congrats on a smooth appointment and getting this further into the rear view mirror. I can't wait to get to the point where you are where follow-ups are every 6 months, then hopefully a year, and no more than an annual check-up. My next appts. are in March so I'm just trying to enjoy the February break.

    sugarmaple - another pic below that includes Kit Kat which showed up on my Facebook memories today! And good call waiting to start tamoxifen until your body has fully healed some more, hope you get past this latest cording and swelling too...

    Salamandra - re: MO saying heartburn was a rare SE, when I mentioned sometimes getting nausea to my MO he also said that wasn't a common side effect, and yet I saw it all over the forums as well! I think some of the SEs are more comment than the MOs give credit for / to.

    MissCommunication - there's a solid group of us who all asked our MOs about the 10mg half dose of tamoxifen to start with and our MOs all agreed it was fine. SEs appear to be more minimal for us with the gradual start... I think it's definitely worth talking to your MO about. We all have to be our own advocates!

    I usually like to reply personally to everyone who posted since my last post (which I can track via the cute doggie pics LOL)... since there's been so much activity (hurrah us for sharing!) and I'm on my lunch break from work, I thought I'd change it up and provide my 1 to 5 word response (plus hashtag) to everyone! This is in order of your post following my prior Feb. 4th update...

    Jaboo - rant away, we welcome it. #husbands - plus, time for another cat? #pawfamily

    Ingerp - wine in moderation is excellent! #mildSEs

    Dani444 - thinking yoga to doing yoga yet? #floofycutiesrock

    sugarmaple - OMG darling cats. #pawfamily and #catlikedogs (and #doglikecats?)

    NewMeBonnie - Nutrition goes a long way. #keepatit

    JenS48 - what have you decided? #oncotype

    GreenHarbor - lucky you're early stage! #envious

    AlicaBastab and mama2tra and mymomsgirl - yay no chemo. #TAILORx

    L8Blmr - yay lifestyle changes and no alcohol #ditto

    TigerLily - hope the muscle pain subsides. #welcomebackfromHawaii

    LHlibrarygirl - thx for asking on dosage! re: osteopenia... #trytamoxifen?

    hapa - Magnesium may help with insomnia. #sleep

    edwards750 - agree! #pawfamily

    TC73 - hurrah for joining the gradual start club! #welcome #10mgtamoxifenstart

    Michelle_in_cornland - Can't wait to see the study! #introductorydose

    Salamandra - awwww cute Kali! #nomoreheartburn - plus ENJOY THE WELL-DESERVED BEACH VACATION!! #postpics

    purplecat - did you try magnesium yet? #goawaysideeffects

    MissCommunication - slow start on tamoxifen helps. #goodluck

    rljes - switch from AI to tamoxifen? #itworkedformyfriend - plus CONGRATS ON LAST DAY OF HERCEPTIN! - plus Amen on the dosage! #support

    HPFULL - hurrah to no migraines! #positivesideeffects (plus #pawfamily for the cutie pup pic!)

    wanderweg - glad you're still doing well on tamoxifen! #inspiration

    veeder14 - did you stop tamoxifen? #curious

    Nomadd - I think periods taper off. #congratsonnoSEs

    hapa - hope you're well. #keepfighting

    egregious - really hoping your SEs subside. #hopefatiguelifts

    Bonnie110 - so sorry, any update from doc? #heal

    InnaB2018 - hello from the paleo thread! #waving

    Palesa2018 - hurrah to no SEs! #greatexample

    Daisygirl66 - what we still get regular periods? #ohwell

    BatyaD - time to adopt a dog. #welcome

    beeline - can you start tamoxifen at half dose? #minimalSEs

    spoonie and wised - hope all is well on your end. #missyou

    OK I think (hope) I got everyone that has posted recently! Anyways, here's one more paw pic for the day, and now I have to go back to work (Salamandra and Dani and other working ladies will understand the balance...). Pic below demonstrating once more how SHARING IS CARING ladies!

    image

  • ingerp
    ingerp Member Posts: 1,515
    edited February 2019

    Pebbles that was the best post I’ve read in months. #yougogirl

  • GreenHarbor
    GreenHarbor Member Posts: 187
    edited February 2019

    Pebbles, you win the award for most detailed post! So thoughtful of you to mention us each by name. KitKat and Domino’s motto of the day is perfect. I have gotten so much support from everyone sharing their stories, even those with a totally different experience from me. Spoonie and Wised, sending you each a gentle hug- you are missed!

  • egregious
    egregious Member Posts: 145
    edited February 2019

    Hey ingerp,

    Thanks for the advice on cutting down on wine. So hard. Like you, I have left open the possibility of having it on occasions. For me this would be monthly bookclub, weddings, and the occasional fancy restaurant meal. But the regular glass before dinner is gone. When I feel sorry for myself, I think at least there is something I can DO to help keep all this from happening again. That and lose ten pounds. Haha maybe summer.

    Fatigue from the arimidex is still there but the other SEs are lifting after 3 weeks. I started super slowly with a quarter pill, after checking with the pharmacist that it was ok to cut them. Took that for 5 days (skipped Day 2 entirely) and went to half. Another few days, 3/4. Feb 8th I went to whole. Each step up was hard initially but gradually getting there.

    There's some stomach/reflux, strange to hear that the doctors don't consider this a normal SE. The wicked headache in the back responded well to a cold pack in the first several days, and on pill increase days, and now I don't need it but do take either tylenol or advil sometimes. It could be a lot worse.

    Somehow we need to convey to our doctors that a gradual ramp-up might help people get going and keep going. This was hard enough doing it slowly.

    Thanks folks for the good wishes! Fatigue is still the biggie, but it's an old friend and I can cope. As long as I can get out for my daily half hour walk it's all good.


  • ingerp
    ingerp Member Posts: 1,515
    edited February 2019

    egregious--not sure if this would help but when hubs is trying to cut back on his beer he starts drinking lots of Pellegrino. Maybe there's some other liquid treat you could substitute until you get out of the habit?

    And while I did notice that I had a few more headaches when I first started on the AI, it just occurred to me yesterday that I haven't taken an Advil in quite a while--they must have subsided. I'm still feeling fairly creaky when I start to move around, but that's not the end of the world.

  • dani444
    dani444 Member Posts: 216
    edited February 2019

    Pebbles- #bestpostever Loved it!!!

    LPLlibrarygirl- Hope you didn’t have to dig yourself out of the winter wonderland! How much snow did you get? So glad no side effects Snuck out of that bag. That gave me a laugh. Let’s hope you do well with the slow start! I hope your shoulder is manageable with the lower dose of naproxen. Makes sense to hopefully lessen your SE’s from the naproxen before starting the letrezole.

    rljes- I did not ask my MO for permission to do the slow start but it seemed to work for so many so I went for it! Also I know everyone is different but I don’t remember reading that anyone’s MO said no to the slow start. I hope your next start goes better!! Truman is awesome btw😁

    Beeline- welcome! I started in February as well, so far they have let me stay lol. You really do have a lot going on! I am with you on the migraines, my cycle was a big trigger too, I am hoping to be in the “better” camp when it comes to that SE. I hope that first morning was just weather related!

    Salamandra- YAY for your upcoming beach vacation, you deserve a wonderful vacation! I really hope the meds increase helps your stomach issues. I enjoyed the sweet pictures of your cat!

    BatyaD- This is definitely a dangerous thread when it comes to resisting a new pet!! I would have already been out to bring home a friend for my fur baby Leroy if I thought I could take on another pet! These pet pics get me😁

    I am still doing half dose and I really haven’t noticed any SE’s. My sleep is a little off but I blame that on weaning off the Elavil. Time will tell! I would be curious if MO’s would have a different opinion about these SE’s if they took a peek at these boards.


  • InnaB2018
    InnaB2018 Member Posts: 766
    edited February 2019

    Pebbles, you are amazing!

    Have a question for you guys: is anyone getting Zometa infusions? Saw my oncologist today. She said that although I am not osteopenic yet, I will be eventually since I am on Anastrozole. She proposes 6 infusions of Zometa over 3 years (once every six months) to prevent it. She also said that Zometa is proven to prevent reoccurrence of cancer. It does have side effects, of course, but presumably with much longer usage.

    Any advice?

    Thanks, Inna

  • GreenHarbor
    GreenHarbor Member Posts: 187
    edited February 2019

    I had a DEXA scan last summer, which showed mild osteopenia at age 52. My MO didn't want to start me on anything yet. Instead, I'm supposed to increase my activity level and my calcium intake. I have several risk factors for osteoporosis (I'm Caucasian, small boned and have a family history of osteoporosis), so it's entirely possible osteoporosis drugs are in my future. Personally, I'd consider the Zometa based on the reduction of a recurrence alone. I'm only planning to do this breast cancer treatment thing once in my life! I would consider the side effects of Zometa, how common they are, and if they can be treated. If I've learned one thing on this thread, it's that when you start taking a medication, you always have the option of stopping it if the SE are unbearable. Good luck, and keep us posted!

  • jaboo
    jaboo Member Posts: 368
    edited February 2019

    Zometa and others have severe side effects and it is to be very well considered, whether they are really necessary. But I guess many doctors brush any concerns regarding SE's away, as with chemo or anti-hormonals.

    I already have osteoporosis (very small frame, BMi 19-20 my whole life) and still my doctor doesn't consider bisphosphonates neccessary yet. AND I started an AI in January. I was put on prescription-strenght vitamin D + K2 and I am to get enough calcium and enough exercise.

  • Tigerlily318
    Tigerlily318 Member Posts: 115
    edited February 2019

    Happy Valentine's Day all!

    Inna, I had a preventive Zometa infusion two weeks ago and had a miserable reaction. I was told to expect potential mild flu-like symptoms and that the pain would be similar to the aches and pains of hormone therapy, if I had side effects at all. I had the infusion over a longer period, 45 minutes, with fluids. I also take a daily claritin and drink plenty of fluids. It was really downplayed. I had severe abdominal pain all around my upper torso (like acid reflux or GI), radiating in my back, extreme fatigue, and completely lost my appetite. I mistook it for GI distress and was taking OTC medication for that and made it worse. I lost 8 lbs in one week, and I was on a business trip to Hawaii which made the entire experience pretty miserable. I still have lingering muscle/bone pain in my torso. It started the Saturday after a Wednesday infusion and lasted almost a week (seriously bad). I'm told it is rare, but I'd ask a lot of questions and just be prepared. Had I been home and prepared (like chemo prep) it would have been different. My oncologist and team knew I was flying to Hawaii (from Boston). The side effect sheet I got - and what I found online from other cancer centers is inadequate. I started googling and figured stuff out. The biggest clue for me it was not GI was that eventually it did not hurt if I did not move.

    Here is a better link I found

    https://www.oncolink.org/cancer-treatment/oncolink...

    That said, I read the studies and there is good reason to take it. My team has 6 months to figure out how to give it to me again and not destroy me. I've also read/heard that the first one is the worst and it gets easier. I think since I am young and did reasonably well with chemo they suspected I'd do as well with this infusion.

    Good luck!

  • veeder14
    veeder14 Member Posts: 274
    edited February 2019

    Hi PebblesV

    yes, my MO had me stop Tomoxifen back in Nov because it was growing my uterine lining very thick. So reluctantly chose to have a hysterectomy to solve that issue. Will be restarting soon although MO wants me to start with an AL.But I have severe osteoporosis and taking meds that directly attack the bones doesn’t make sense when there is an alternative

  • InnaB2018
    InnaB2018 Member Posts: 766
    edited February 2019

    Tigerlily, OMG, that was scary! My oncologist also downplayed the side effects, but I already did a search and freaked out. I don’t have to decide now, but If it’s goinf to prevent recurrence, I’ll probably do it. I had an aggressive cancer, so i need all the help I can get to avoid repetition.

  • Robyn57
    Robyn57 Member Posts: 2
    edited February 2019

    I am taking tamoxifen and would like info on cbd oil to help with side effects . I want to make sure the cbd doesn’t take away the potency of the tamoxifen

  • LPLlibrarygirl
    LPLlibrarygirl Member Posts: 82
    edited February 2019

    Last week my MO told me that I would also need Zometa infusions, based on my DEXA scan which showed osteopenia in hip and osteoporosis in lower back. She said I would have one a year and I said that my forum friend (Tigerlily) was going to have two a year. My MO said yes, it can be given that way as well. InnaB, my doc said the infusions would help to prevent cancer recurrence too, which I thought was great. From reading Tigerlily's posts I asked about side effects and she said at most I would probably have 72 hours of flu like symptoms, if any. (Must be the standard response) It made me wonder if they only give it once a year at my hospital because they know the side effects can be so awful!! My MO wants to me to have some time to get used to letrozole before thinking about Zometa so I will have some time to read more about. Thanks for the link, I will check that out.

    I just got news of more appointments scheduled for early March. I will have a blood test to check cholesterol because another SE of letrozole is raised cholesterol. I will meet with my MO's nurse practitioner to talk about how things are going overall and I will meet with a dietician.

    Today was DAY 1 on 1/2 dose of letrozole and so far, so good. I did notice I was quite warm a couple of times, but nothing unmanageable. Will take another pill tonight. Fingers are crossed!

    Dani, our 6-12 inches of predicted snow turned out to be only about 5 inches, so not bad. We'll get a little more tomorrow. Want some?

    Veeder, it would be interesting to hear why your doc wants you on an AI. I think that an AI might provide more protection, if you are post-menopausal, but certainly your doctor must know about your bones...My MO told me (a little) about both tamoxifen and AIs and asked me to choose which one I wanted to take.

    Pebbles, that was a great post.

    I would love to hear from Wised and Spoonie too.

    A large red heartHappy Valentine's Day!

  • Michelle_in_cornland
    Michelle_in_cornland Member Posts: 1,233
    edited February 2019

    All of you gals trying an introductory dose, make me so happy. Please spread the word to anyone that you know, that has to use an anti hormonal. I am excited to hopefully work on a survey of women that did introductory doses. Whatever we can do to help each other, we must do. Happy Valentine's Day!!!

  • purplecat
    purplecat Member Posts: 227
    edited February 2019

    Hi all ... once again I wish we could just gather in a big room and drink yummy vitamin-and-mineral-packed cold (to alleviate our hot flashes) beverages and talk in person!

    Pebbles and Dani asked about magnesium. I found some magnesium glycinate in a powdered drink mix and have been experimenting with that a bit. I haven't had any more night leg cramps, for what it's worth. It's a bit citrusy, and may be giving me a bit of reflux at night, but from what others have reported, that may be from the tamoxifen, or the fact that despite my best intentions I still find myself snacking too close to bedtime. So many variables, sigh. It sounds like it's best to take the magnesium before bed, but then I'm taking it with the tamoxifen, and maybe that's a bad thing to do?

    Has anyone else been having weird dreams on tamoxifen, or more specifically, hearing phantom sounds with sleep? Last night I woke up at least 3 times thinking I'd heard sounds and wondering if someone was trying to break into my house. It wasn't the first time this has happened either. Then again, PTSD-type symptoms are pretty normal after breast cancer treatment, according to one of the articles I've seen recently.

    So many variables that I'm resolved, as much as I can, not to blame tamoxifen for any weird symptoms that can otherwise be explained by perimenopause, PTSD, or a need for better food/exercise. As relatively easy (when compared to mastectomy/chemo) as my treatment was, I do NOT want to go through it again, and I certainly don't want to do more advanced treatment. It's worth preventing, and if this little pill can help, then I'll tolerate the weird dreams and the hot flashes and whatever comes next and resolve to be grateful not to be dealing with cancer instead.



  • OTMom
    OTMom Member Posts: 58
    edited February 2019

    Reading about people's experiences with Zometa with some trepidation. I'm supposed to get infusions of it every 6 months because I'll be starting OS+AI and already have osteoporosis in my spine and osteopenia in my hip. Just finished rads this week, so first lupron injection in about 2 weeks.

  • Tigerlily318
    Tigerlily318 Member Posts: 115
    edited February 2019

    OTMom, LPLibrarygirl....regarding the Zometa and side effects....with everything else the doctors play the law of averages and percentages. And that makes sense. They have no idea how something is going to impact an individual or what side effects someone will get. I'm irritated because I wish the side effect sheet I was given was more detailed. And, I share my story so 1) I can vent and 2) that folks are aware. I think that I was on the rare side of things and hopefully you'll be fine. But it's good to not do the Zometa before you fly half way around the world for a business trip you delayed for six months or before your kid's wedding or a big event or whatever and that you're prepared in case. I know that my team will take what I say into account and I am hopeful we'll do better next time. From everything I have read the Zometa is the right decision. I just wish I'd timed it better and had been in "chemo mode". If I'd been in that mindset I would have been better prepared mentally too, good or bad.

    That said, I've now had two lupron shots and am well into month 2 of Femara and my side effects are getting better. The joint pain/stiffness is much better and the hot flashes are much better. Sleep still isn't great, but the side effects are manageable and getting better and I'm very, very happy about that. And, I'd much rather have fewer side effects there since it is a daily thing. I went back to the gym today - hooray!!!!!!!!!!

  • GreenHarbor
    GreenHarbor Member Posts: 187
    edited February 2019
    PurpleCat, I like how your mind works... I feel like I know everyone here so well. Imagine the wonderful conversations if we all met in person! I’ll bring tropical drink umbrellas so our cool and nonalcoholic drinks look festive. Maybe some chips and guacamole in case we get hungry? If anyone deserves a celebration it’s all of us - we’ve each been through so much. I’m grateful for each of you.
  • Daisygirl66
    Daisygirl66 Member Posts: 2
    edited February 2019

    Hello Ms. Communication, I started on 20 mg. Of Tamoxifen 6/1/18. I take mine with a low dose aspirin right after breakfast every day. I did this to avoid SE of insomnia and stomach upset. My logic was i would have less in my system by bedtime.So far my only SE are slight fatique, slight anxiety and mild restlessness at night. I will be 53 on Saturday and still premenstrual. Ugh. Best of luck to you on your continuing journey.

  • pebblesv
    pebblesv Member Posts: 486
    edited February 2019

    Hi ladies! So glad you enjoyed my post (Ingerp / Inna / Dani / LPlibrary / GreenHarbor thx! #fun and I agree that it would be amazing if we could all meet up in person one day with our stories to share. This community has been amazing and just knowing that we're all going through this together has helped me stay strong, and impact my choices too.

    Purplecat - I've had really vivid dreams, not weird so much as vivid and I remember them the next day way more than usual.

    Anyways, I wanted to share an interesting update with the group... my Dad who is a retired oncologist wants me to stay at 10mg until I meet up with the oncologist in early March to discuss. He found a study showing women at 5mg doses did just as well as those at 20mg and he's questioning the “one size fits all" of 20mg. They used to prescribe 40mg until the study came out showing 20mg was just as effective and with less side effects so now they prescribe 20mg.

    So here's the thing. My Dad was a doctor who went against the grain and saved a lot of lives because he never did the one size fits all approach but instead tailored his treatments to the individual needs of the patient. Yes he's a saint, also he never became director of the department because he did not play the political game. He kept treating patients that hospitals said they couldn't treat anymore and he saved many that others had given up on, and the hospital never interfered because he was such a beloved doctor that he could do as he saw best, but they also never let him take a bigger role because he did what was right for the patient, not always the financial stuff of the hospital. He would tell me you treat the patient until it's the patient who decides otherwise and nothing else. He understood that this is about our lives and not statistics on a board. But I digress - the point ishe treated cancer and utilized chemotherapy but always adjusted doses to the patient, and his patients got through chemo very well. IF I had needed chemo he was going to make recommendations to my oncologist and ensure I did not get too heavy doses for my size (5 ft). Luckily thanks to my oncotype score I did not need chemo but I knew if I did I really would need him to ensure it was administered right.

    So my Dad who is rare in that he's not a “one size fits all" doctor like most is independently questioning whether 20mg is too high a dose for me. He brought it up to me, not the other way around. I was really glad too because I was going to transition to 20mg next week. I'm doing remarkably well on 10mg and I'm doing other things to try and reduce my risk of recurrence too - exercise where studies have shown 1/2 hour a day for 5 days a week is supposed to cut our risk of recurrence by half, nutrition and also lost 30 lbs since the diagnosis and have cut sugar and dairy entirely. So maybe that in conjunction with 10mg vs 20mg of tamoxifen will be enough?

    I don't know. On the other hand maybe I'll be just fine on 20mg so what's the worry. But for now I'm going to stay on 10mg at my father's advice until I see my MO in early March. Just wanted to share that because it's intetesting that my Dad - an oncologist who treated cancer more successfully than most (hence why he is a godfather to so many) - and a doctor who treated based on each patient's individual profile vs one size fits all - is concerned about the one size fits all 20mg dose.

    OK this tie I did it get to address everyone back personally but I wanted to share this! And also one more can't get enough photo of Domino in her rain gear.

    image

  • Paco
    Paco Member Posts: 53
    edited February 2019

    Just for your information, if this wasn't made clear to you before being prescribed it, get regular blood tests if you are taking Tamoxifen. I was on Tamoxifen for 9 months and have been off for about 2 weeks now largely to stop significant hair loss. I had an appointment with my primary doctor last week and she ordered a blood test for me. Turns out my ALT and AST levels (testing for liver enzymes) are abnormally high and my WBC (eosinophils) were down close to 0, i.e., abnormally low. Both of those indicators are normally due to alcohol abuse. I drink very little, maybe one drink or at most two per week, so there is no way my liver is affected by alcohol. It is likely due to the tamoxifen.

    This only confirms my decision to come off the med. I had early stage cancer, so my doctor gave me her blessing to go off, but please be careful if you are going to take this medication.