Any Early 40s Declining Tamoxifen?
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well i remember saying just about everything you so openly shared.. Thank you for your confirmation im not the only one wondering the same thing.. Im 1yr out from beginning my long journey on AIs ive tried tamoxifen.. Se were horrible joint aches at night especially. Headaches and funky periods like spot every two weeks. Then we took a break from that for trlstar injection 1x a mo so i could take the letrozole .I went frim peri menopause to post in 8 months. Chemical meno pause.. What im going to share is my experience so please know we are all different.. And im 46 this month im single mom. Tellyou right now where im at. Been diagnosed w atrophic vaginitis. Sex is completely off the table. For me.. Im being told to embrace my new life and figure out what works . I regretfully have to say ive compromised my own beliefs about menopause. im mourning the loss of my youth and doing my best to embrace myself. Ifeel the damage is done .. Some days.. Other days i just savor every moment ive got.. My surgeon really summed it up for me . she said if its in the lymphnode that doesnt mean it couldn't be. Somewhere else.. By taking the blocker it starves the cancer and it dies.. Slowly.. So i dont know i hope that helps? However i do regret giving in to the hype of it all. i ve found life changing diet that shrinks tumors.. Way to hard core for me but im doing whatever it takes. i m not going down that easy.im confused as well..theres gotta be a better way..0
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Hi Spoonie,
I was diagnosed at 41 in 2016 and like yourself struggled with making this decision. I finally decided to stop taking it in November after I experienced thickening of my uterus and other related issues. I see from lots of the replies to your post that many Oncologists appear to be quoting the relative benefits of Tamoxifen as opposed to the absolute benefits. It took me a long time to get my head round the difference between the two but understanding these statistics may help to solidify your decision one way or the other....
https://integrativeoncology-essentials.com/2017/08/absolute-risk-important-statistic-need-know/
You may also want to ask your oncologist what your Allred Score was..
https://medical-dictionary.thefreedictionary.com/Allred+scoring+system
Best Wishes
KJWLAM0 -
Hi Ladies,
First, thank you so much for all the links and information on Tamoxifen studies you guys are putting together in this thread. Plenty stuff to read!
I had my DCIS DX last May, at 38yo, and started Tamoxifen in the beginning of July. I was very apprehensive about taking this drug because of its side effects (I spent almost a month reading about them, and people's personal experiences), but in the first 4 months, I felt pretty normal, save a mild hot flush here and there. I had a routine blood panel done in November, and everything looked just fine. My usually high cholesterol was actually down by 10mg/dL. I was like, WOW lower cholesterol, almost no blood during periods, facial hair thinning, increased sex drive.. this drug doesn't seems so bad after all!
Enter December and I start noticing I get tired really easy, and going to the gym takes my energy away for the next two or three days.. but I've been working like crazy these last weeks, so it can be that. Some night, six or seven hours after dinner, I wake up feeling really sick and my head ends inside the toilet, so suddenly I didn't even felt nauseous. Now, I rarely throw up, can't remember the last time, but if it happens once every 5 years, it saying too much. And by the looks of the contents expelled, there was hardly any digestion
That's when I started notice I'm having digestion issues during the night time.
Six months into Tamoxifen and my stomach is definitely acting weird. At night I feel constantly full after eating, and sometimes it gets so uncomfortable I have to take Eno for some relief.
And tonight I find myself throwing up for the 3rd time in two months.. I got this really bad heart burn after dinner, and a few hours later had a snack that went right down the toilet. Felt so ill disposed, to the point of squirming on the bathroom floor, drenched in sweat, so weak I thought I was going to faint.
And because I suspect Tamoxifen is to blame about these recent digestive issues, I'm stopping it for the first time after seven months, and will try an appointment next week with my MO to discuss this. I don't feel good about doing this, but I don't feel good about throwing up either...
My apologies for the long post, but I really needed to vent..
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Hey silly nerd,
I've been having heartburn issues since starting treatment also. I'm on 40mg of omeprazole and it helps but not enough - my sleep is still interrupted and bad and I feel weird hunger/fullness. I had an endoscopy yesterday that seems to be normal, so I'm not sure what next steps will be. I think if it weren't for the sleep I would try to push through but if sleep isn't working, my life is pretty much screwed. I'll wait and see what the follow-up with the GI doctor says and then follow up with my MO.
When I told my MO about it, she scheduled the consult for me with the gastroenterologist. He scheduled the endoscopy. I feel like at least they are taking it seriously, though we'll see how things turn out.
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I recently stopped taking Tamoxifen. I only took it for a month, in the beginning I really didn't have many side effects but after 30 days, I was feeling horrible. I can deal with the hot flashes ok but I started feeling dizzy, lightheaded and an extreme weakness in my arms and legs. I started getting heart palpitation as well, which I think is what caused my PB to go up. Mine's always been around 112/80 and went up to 150's, freaked me out. I've been seeing a cardiologist and now a neurologist because I had an abnormal brain MRI come back. Who knows what that is. Blood pressure is back to normal now and I did have an EKG which was fine and had an Echo today. Tomorrow I have an EEG scheduled with the Neurologist and waiting on blood work to come back that he ordered. I stopped Tamoxifen about a month ago and I do seem t be feeling better. This is going to be a very difficult decision to make regarding Tamoxifen. There has to be a QOL too. I've never had any health issues and Tamoxifen is the only that has changed. Maybe it's still SE's from radiation and then Tamoxifen on top of that (20mg). My last treatment for radiation was 1/02/2019 and started Tamoxifen a month after that.
I wish the best to you all and thanks for listening.
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So sorry you're also struggling with Tamoxifen DeeBB. it sucks!! Hope your tests come back normal. I took 3 months off, after being on it 2.5 years, and loved being off it. Didn't realize how much I wasn't feeling like ME until I started feeling like ME again. Hope that makes sense. Somehow though I convinced myself to at least try again at a lower dose if MO would agree. MO agreed to 10mg after talking with another oncologist who only tx breast cancer and I'm cutting them in half because, well, it is my choice! I already notice a difference in just 3.5 weeks back on it. Bleh! My muscles feel terrible again (dead - as if they don't recover from exercise); and I'm already back to having bad mental chatter in my head (telling me I am not enough, etc). Thankfully the joint pain isn't back yet because that is what made me take a break from it. MO blamed it all on menopause (I'm 49) - which it obviously was not since all my symptoms went away with the break. There are also weird things going on in my head that feel vascular and my BP is up. It's been low my entire life (low 90s/50s), and now it is normal... which feels funny. I had MRI and MRA of head and neck last week and all nml/clear. That's good news but doesn't explain my strange sensation of feeling like I am upside down in terms of head pressure. Not sure if Tamoxifen related. Of and hot flashes for past few months (started during break from it and now worse) after not having any hot flashes for the year leading up to my break from Tamoxifen. I'll give T a couple more months and see how my sports/training goes. QOL is most important!
- xo
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Thanks Andraxo: Yes, I have the weirdest feelings too, like my arms are rubber. I just don't know what to do. I've been off Tamoxifen for a month now and thought it would be better, which I guess some days are better than others. I'm hoping in the next few weeks, things will be better. My blood pressure has pretty much gone back to normal and no need for the BP meds any more, that's promising. I still get heart palpitation though, and just a weird fogging feeling in my head, like a humming in my head. Then of course, if any new feelings come on my anxiety goes up, I've never been anxious before and this is just so annoying and troubling.
I hope your sports training goes well and you feel better in the next few weeks. Thanks again for responding, I don't feel so crazy.
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Dee - I've learned to trust my gut, even when drs say "It's nothing to worry about" or "There's no coorelation between what you're feeling and this medication.". Don't feel crazy. Keep track of your symptoms in a journal, watch them over time, and keep telling your dr about them.
One thing I will say is that hormones, and Tamoxifen obviously messes with our levels, effect the brain. So it stands to reason that it can effect our mental health and anxiety.
I'm not sure what will help, but just know you're not alone and not weird, not crazy. We believe you and hopefully if you keep speaking about your concerns your dr will listen. Hang in there.
Hugs.
Also - here's a study about anxiety and Tamoxifen, granted no one here is a monkey, but if it makes them anxious, I'm sure it does the same to us!
"Tamoxifen not only appears to antagonize estrogen's anxiety-reducing effect, but also to increase anxiety-like behavior by itself, in the absence of estrogen," said Wilson. "While tamoxifen is an extremely effective anti-cancer medication, women may stop taking it because of its negative effects on behavior and emotion."
http://www.yerkes.emory.edu/about/news/developmental_cognitive_neuroscience/tamoxifen.html0 -
Just want to say hi to all who've posted on my thread in the past few months....I needed to disappear for a "bit". Living with constant Breast Lymphedema, Fibrosis, and pain were daily reminders of cancer and I just had to stop talking about it. Thanks to my Cancer Rehab and Acupuncture weekly appts things have improved, though I still have to maintain my LMD and PT at home 45 mins each day or more, plus wear my compression bras/prosthesis to keep it all in check. So, I have some mental room to get back on the boards here and there.
I'm glad my ramblings were helpful in some fashion. I wish I could say that I stuck to my guns and stuck with my decision to forgo Tamoxifen, but my new MO (whom I love) gave me new information that put the fear of death in me. Not that she was trying to change my mind, she simply wanted to be sure I had the correct information and my current recurrence rate (which I DID NOT know included METS). I'm glad she did because I had no idea of some of what she shared with me, and she was willing to start me on 5 mgs and follow tumor markers as well as liver panels, plus was open to new research. So with her support I started on 5mgs Tamoxifen daily at the end of Feb.
It's been rough going. Joint/spine pain has increased on top of what I already live with so that's been tough, although I think I am adjusting a bit to that. Night sweats are atrocious. And I'm tired. The worst though is that I can't drink alcohol at all (not beer, wine, or anything). If I do, I'm immediately sick, flushed, dizzy, and feel like I've had 3 or 4 bottles instead of just a small 4 oz glass of wine. My MO said "don't worry. just don't drink alcohol.". That didn't fly with me, so I saw my primary this week and she ordered a bunch of labs.
And right now, I'm scared...waiting for news on my crazy abnormal bloodwork. I have the results online but haven't heard from her yet. Prior to taking Tamoxifen my entire panel, including WBC & RBC was totally normal two months ago (2/13). Now they are very LOW and ELEVATED respectively. Also, my liver/kidney levels are all over the place. And my Cholesterol Panel is a mess. The only thing that is different since my last labs is the addition of Tamoxifen.
Of course, Recurrence/METS is in my brain...worried. Hope it's nothing. Hope they redo the tests and it's all in error. If not, well, I guess I'll cross that bridge when I get there. Wishing you all the best and thanks for being on the boards. We sure help each other get through the roughest of days, don't we? Hugs and healing to us all.
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Thank you so much Spoonie - That does make me feel better. Still waiting on my labs and EEG from the Neurologist, hoping for good results, if not....well I guess that is a starting point to get treatment started. Glad to hear you love your new MO and good to hear you are feeling better. Thank you for the information you have shared. I myself am a wine drinker and now, even though I have not taken Tamoxifen for a month, I still can not have more than 1 glass of wine, if I do I also get a weird weak feeling and lightheaded.
Hugs to all and hope everyone continues to heal both physically and mentally
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Kuddos to all of you. I've always considered myself a strong person but all this is, is making me feel not so much any more. Just gotta keep going and take care of yourself xxxx
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Ok, it's been a "bit". Figured I should update this thread.
The things I was concerned about in April, after grudgingly deciding to start 5 mg Tamoxifen, thankfully "resolved"; my CT came back clear, my labs readjusted to in range.
HOWEVER, my quality of life continued to decline at a rapid rate. I still stuck it out though, to the end of May.
Followed up with my MO in the middle of May about all the SEs. She rxd me Gabapentin for the pain/fatigue. I gave it a bit more than 2 weeks, but things continued to decline. By the end of May I was ready to jump of a bridge to escape the pain.
That's when I decided, nope, this is not worth it to me. Tamoxifen is not a guarantee. I could suffer through 5 year of this, miss nearly 85% of my life at age 42, and STILL have a recurrence or METs. What then? Would I be able to live with myself? No. I would regret wasting those years sufferring and missing out, when I should have been living.
This coming from a young woman, with a family hx of BC and other cancers, plus a METs Oncotype risk of 28-35% w/o Endocrine Therapy. None of these decisions are easy ones, but they need to be ones we can live with, right?
So despite my fear of METs, I stopped taking Tamoxifen at the end of May. I'm not back to my 100% "Spoonie"-self, however I am happy to say that I don't want to jump off a bridge anymore. I can do the dishes. I can walk my dog. I can do much more than I could just a little over 10 days ago.
I let my MO know that I'm calling it quits for a few weeks. I haven't decided for sure whether or not I will try other brands of Tamoxifen or go on to the other options my MO is offering me; ovarian suppression + Arimadex and/or oophorectomy. I'm leaning towards no more Tamoxifen at all, and after seeing me struggle so deeply this past 2 months, so is my family.
Anyway, I hadn't been able to keep up with my symptom/medical journal for the past month or so, but I finally caught up and wrote down a list of all the things I couldn't do while taking Tamoxifen. It's a pretty extensive list and showed that the Tamoxifen affected all areas of my life; physical, emotional, mental, and social. That way, someday, if needed, I can remind myself that I tried that option and just how much of non viable one it turned out to be for me.
Here's hoping you other ladies have had better luck with your own journeys. If not, well you're not alone. Hugs. Wishing everyone health, healing, and a ton of luck!
If curious, here's a chart of what providers suggest to patients due to their experience on Tamoxifen.
(taken from ( PDF: Cancer Care - Ontario))
PS -- Sharing picts of my LIST here for anyone who may need to see it and know they are not alone with how severely Tamoxifen has affected their quality of life. Remember, I am 42....this is not what my life was AT ALL like prior to Tamoxifen, even given my disabilities.
PSS -- I was dxd with 2 rare occurrences/SEs from my 2 months of Tamoxifen at 5 mg daily. Thankfully they were temporary and have gone away at this point. (vasculitis & hypersensitivy). I'm still waiting for my Depression/Anxiety to go back to pre-Tamoxifen levels. Tamox definitely kicked that all up a notch as well.
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I so appreciate your transparency with this. I'm not early 40s but I'm definitely wrestling with whether to take tamoxifen. Thank you, Spoonie.
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I also stopped taking Tamoxifen, I felt horrible. I really thought I was having a heart attack a couple of times. I drove a Mustang and it was standard, I only had it for a year but the cramps in my left calf were getting so bad, I actually traded the car in for an automatic vehicle. I only took Tamoxifen a little over a month but honestly it got to where there was just no quality of life. The fatigue was so bad that I constantly had to move my hands to make sure they were working. I felt so weak and drained. I still have some fatigue but it is much better (I'm sure some of it is from radiation as well). Our bodies can only take so much I think. I was having heart palpitations, my blood pressure has always been 112/80 or 118/80 and it went up to 158/80. So I was referred to a cardiologist and also had a head and neck MRI and that did come back abnormal, so I was referred to a Neurologist. The Neurologist is saying I have extreme fatigue and adverse affects from Tamoxifen and radiation. I do have another head and neck MRI scheduled for next week. He didn't seem to concerned that its anything to really worry about but just wants to make sure the one spot hasn't changed or gotten bigger. I have never had an MRI before so we don't know if it's always been there or if it's something new. Being that I've never had any neuro issues before, he seems to think it's not something to worry about but being proactive is the best practice. This all started back in mid March. I'm starting to feel much better now and able to get back to my light weights and stationary bike daily. Best of luck to everyone and remember it is your choice.
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Edj3 --> Knowledge is power and I'm more than happy to help spread the word about what I've found if it can possibly help others in making their best informed decision going forward. Good luck in making the choice that's right for you. Keep us posted.
DeeBB --> Wow. You had quite the rough road on Tamoxifen too. It's scary when the heart is involved. Yikes. I'm glad you are feeling better now and getting back your quality of life. I think that's wise to stay proactive, especially with the MRI. Better to be safe than sorry as they say. At least now you'll have a baseline to go from and can be confident that nothing is changing at this time going forward. That can certainly be a relief for you to have in the back of your mind. Keep us posted on what the results are. Sure hope they are stable and unchanged.
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Hey Spoonie!
I am so glad that you noticed a big difference in just 10 days off Tamoxifen. I can't wait for you to get to 2-3 months off it!
I too noticed a difference by 10 days and it just got better and better. By 3 months I couldn't believe the difference and that 90% of the symptoms my MO blamed on perimenopause, were really from T. 10 days ago I ran a half marathon - that alone speaks volumes for my ability to exercise again.
- xo
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Congrats Andraxo on completing another half marathon! That's amazing! I'm so glad that your life has returned back to your norm! Woot!
You're right, I continue to feel more like my old self day by day. The hot flashes sure did intensify though for a bit! I had to go to bed with ice packs some nights!!! I'm sure that my body was so confused and trying to process, get rid of all of the extra Estrogen built up in my system. I think, as I'm nearly finished with Week 3 of being off of Tamoxifen, my body is much closer to getting the last bits worked out.
I'm hopeful that when I start OS + AI in the next 2 weeks my journey will be much smoother. Everything crossed!
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Spoonie, thanks for the kind words. I'm glad you are feeling back to normal as well. Please let us know how you do with AOS + AI.
I seem to be a little better day by day. Yesterday and today are actually the best I've felt in a long time. Had my 2nd MRI yesterday to see if anything has changed with the abnormality that was seen on the first one. Hope to know something by end of day tomorrow. I follow up with the Neurologist on the 27th.
I was actually able to do a good work out yesterday evening but unfortunately I must have over done it, now my back is killing me today. Who knows, at least my fatigue has seem to let up quite a bit and next on the list is a sleep study. I did a home sleep study and I was diagnosed with moderate to severe sleep apnea, I'm sure doesn't help with the fatigue. Little by little hopefully getting it all taken care of.
Best to everyone and I hope everyone is healing well.
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This whole thread is so helpful. Thank you so much for sharing all of this. I'm 40, just diagnosed with DCIS (5mm area, grade 1, but not clear margins in excisional biopsy), and I'm trying to decide between lumpectomy followed by radiation and maybe Tamoxifen or mastectomy on the trouble side. It is SO hard to choose the lumpectomy thinking I'll be taking Tamoxifen, only to realize I can't tolerate it! In my heart, I don't think I can put myself through it (unless I see the numbers this Tuesday and it's a huge different in recurrence rate). I have two little boys, and I'm their primary caretaker. I'm also really active (it's been killing me the last month or so between biopsy from hell and now just being post-op still to not be able to run and exercise like normal). So sorry to be a part of this club, but I'm so glad to hear everyone's experiences as I try to navigate these choices!
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famousthecat - my understanding is that tamoxifen would be recommended no matter if you did lumpectomy or mastectomy. It could be that your diagnosis is different, but would double check that before using it as a criteria to choose. If you do lumpectomy, they would most likely recommend radiation while they don't recommend it as often after mastectomy.
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Hi famousthecat - I worried a lot about taking tamoxifen but it has been totally fine. In fact I am training for a marathon at the moment. Many women tolerate tamoxifen very well.
Choosing your treatment is very difficult. Ultimately I went with my gut and at the end of the day it was the right choice for me.
Best wishes
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Hello! I've been contemplating taking tamoxifen for a month now. I'm 12 weeks post op from bilateral mastectomy. I filled the script and have been staring at it daily now wondering what to do. I met with a integrative oncologist outside of my conventional oncologist just to get a second opinion on the drug. She said she gives her patients a gradual schedule to take tamoxifen so it builds up in the body. I want to share this with you all who are on the fence like me. I started taking it this morning and will be following her recommended schedule;
week 1: 1 pill Monday
week 2: 2 pills Monday, Thursday
week 3: 3 pills, Monday, Weds, Friday
week 4 4 pills, Mon, Tues, Thurs, Friday
week 5 5 pills, Mon, Tues, Thurs, Friday, Sunday
Week 6: 6 pills, M, T, Weds, Thurs, Friday, Sat
Week 7: 7 pills, one a day
If there are side effects, I have the patient go back to the previous week and stay at that dose for two weeks. For example, if the side effects occur at week 4, the patient goes back to the week 3 schedule and stays there for 2 weeks, then after two more weeks at level 3, if all is well, she returns to week 4 and continues moving up per the schedule.
*I will keep you all posted with my tamoxifen journey using this schedule.
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Hi famousthecat - I think DorothyB is right that tamoxifen would be recommended in either case, so your choices would be lumpectomy followed by radiation or mastectomy. I’m 44 and chose the lumpectomy followed by radiation, was actually relieved that I had the option to do a lumpectomy as not all women do. I sailed pretty easily through surgery, radiation and am on tamoxifen now and like AMLmom I worried a lot about tamoxifen and am tolerating it fine.
I’m active too and lumpectomy does have a shorter recovery period vs mastectomy, and I prefer my natural self if I have a choice so I was just glad I didn’t need any reconstruction. Yesterday I swam 100 laps so that was a nice symbol to being able to be as active as before this happened again!
It’s all just a personal choice. The recurrence rates are the same with either option from what I’ve been told and read in the studies.
To the other ladies - a post-weekend hello from Domino and Tucker
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SPratt - interesting schedule to start gradually. It is actually more gradual than I am starting. Hoping that neither of us has bad side-effects
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Hi all, don't think I've posted about hormone therapy, yet. I'm early 40's (barely, lol).
I am 44 (43 at dx end of May '19), stage 1, 3mm tumor, "very" er/pr positive (over 95%), lymph nodes negative, margins clear, no BRCA mutation. Going through 16 sessions of radiation at 42.56 gy then 4 boost sessions to tumor bed at 10 gy - currently done with 13 of 20 rads sessions. My recurrence percentage (according to Oncotype DX) is 6% with tamoxifen, so 12% without. Seems like that's an absolute vs relative calculation but I'm still trying to wrap my mind around that difference. I don't recall seeing an Allred score on my path report but will ask next time I see the RO or MO.
I took birth control pills for 27 years, prior to my BC dx, which I stopped immediately upon my dx. I asked the RO this week if stopping the birth control pill is a factor lowering my recurrence percentage and she said "absolutely." That, coupled with the potential for so many quality of life altering se's - I'm an athlete, very fit/high muscle content/low bmi, have very good qol, etc - has led me to believe I'll decline tamoxifen. I am also very wary of the increased risk tamoxifen poses for uterine cancer, since my maternal grandmother died of it. I can detect a breast tumor (I did this time, and a mammogram never did!), but can't palpate a uterine mass. That said, I'm a bit concerned about the information that microscopic malignant cells may have traveled distantly prior to excision/radiation, though...eek. Will talk to docs about that, although so far they've all been very superficial with what they'll share or elaborate upon, quoting simply the standard of care, even to my pointed or specific questions.
I have taken my body off of a synthetic daily hormone and am not interested in going back on another synthetic, systemic drug for 5 or 10 years, especially one with a range of terrible and/or risky side effects. I am also learning about and pursuing complementary/integrative approaches to lower my recurrence risk, and that is a topic that one can research forever! Cutting alcohol intake, minimizing stress, eating more raw foods, all are relatively easy to do (and there are so many more).
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@GenX If I were in your shoes, I wouldn't take tamoxifen or AI either for the same exact thoughts that you shared in your post. Unfortunately, I had a 1 node positive and have two gene mutations so I feel I have to do something. I've refused my SO/MO's recommendation for 25 treatments of radiation - some may think I'm crazy but I'm going with my gut on this. I'll give tamoxifen a try using the schedule I described in an earlier post. Stay strong and keep up the good work!
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Wow, spratt5, respect to you for powering through and following your gut. It's your body...which can be so easy to forget since the standard of care machine doesn't really care what we think nor have much time to elaborate when responding to those of us who do ask questions and weigh the costs vs the benefits for our unique circumstances.
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Hello. In my last post, I mentioned that I was doing totally fine after tamoxifen, so I just thought I would post a quick update as to not mislead anyone. In the past month, I started to develop leg and foot cramps as well as joint pain. Running has became very difficult and I can barely get through even shorter runs. I feel like my fitness level is rapidly declining each week, even though I keep running. My heart rate skyrockets, sometimes to 195 bpm, even if I jog slowly. I have also had fatigue (need a short afternoon nap each day). vaginal dryness and some itchiness which is pretty unpleasant! Haven’t been able to be intimate for weeks. I stopped taking my pill for 10 days, but didn’t have immediate relief and worried about staying off too long so I went back on. Anyways, this is all totally bearable so I hope I don’t sound like I’m complaining. I’m happy that I have treatment available. I just wanted to be honest about my experience.
I have my first MO follow-up appointment next week, so I will see what he says.
In the meantime, I’m still somewhat sore in my outer breast/underarm area - seven months after surgery and 3.5 months after radiation. I’m not sure whether it’s residual pain from surgery or scar tissue from radiation, but it keeps me awake every single night. I end up dreaming about it because I am always aware of the pain while I am sleeping. It’s not a terrible pain at al, but very tender. Not sure if this is normal. Of course my mind is playing games on me 😞
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AMLmom - it takes 2-3 weeks just to get to Tamoxifen out of your system because of how long its half-life is. You went back on it before were able to see the difference/what it was causing. usually breaks are 1 month. I took a 3 month break by choice because the 1 month break recommended by MO was soooooo nice and I wanted to see just how much better I could feel. Before break I had all the symptoms you had (muscle problems, joint pain, vaginal dryness, but also mental issues I didn't even realize were so bad until I went off it and felt like ME again. I was miserable from an athletic performance standpoint and cranky a lot. By 3 months off it, my athletic performed was great again. I am back on it now at 5mg and had a fantastic summer filled with all the sports and adventures I wanted to do. No where near old side effects but those also took years to really get bad - especially the joint pain. The past 3 weeks I added 2 days of 10mg. That's all I'm willing to take. I notice the 10mg days the day after.
I hope you find the right balance for you! - xo
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AML Mom - when did you start tamoxifen and were you taking 20 grams / day?
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