Bottle o Tamoxifen
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You can read the full article here, but after a lengthy description of the goodness of grapefruit (of which there is a lot), the article goes on to say:
" . . . there is evidence to suggest that grapefruit may play a role in estrogen metabolism (in much the same way that drug interactions occur with grapefruit), thereby increasing circulating estrogen and breast cancer risk. Another major population study published in 2007 found that grapefruit consumption was associated with increased risk of breast cancer among postmenopausal women. Still another 2007 study of postmenopausal Mexican-American women found that consumption of grapefruit was associated with higher circulating estrogen levels. A While the results of both population-based and laboratory studies concerning grapefruit are contradictory, there is enough evidence to suggest grapefruit consumption should be limited or avoided by breast cancer patients and survivors, especially those with ER+ disease."
Since my breast cancer is ER+, best for me to avoid grapefruit.
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Thanks BLB-day for that detailed response
and wishing you all the best for this Fridays
surgery!
Curiously, my tamoxifin journey seems to
parallel your moms- I am 64 with zero
side effects 8 months in ,on 20 mg a nite-
Fingers crossed- but i asked the hematologist
at the hospital 4 months ago re: blood clot
worries snd tamoxifin- and he explained
that the readon why tamoxifin may create
a greater risk inolder women is cos of
a more sedentary lifestyle- he said if i
was lying or lounging most of the time
it wouldne an issue/ but my weight
is optimal and i still do marsthon cycling in
summer snd hiking 7 days a week
so he said risk low
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Cassiecanada - You are an inspiration. That’s amazing that you do marathon cycling & hiking. I have to drag myself to get on the Peloton. I hate exercising....but I am on it.
Yes. It’s important to check in. I used to take Curcumin supplement but it doesn’t go with Tamoxifen.
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A couple of weeks after I started my 20mg I got a cold yuck sickness that lasted three long weeks. Been back on tamoxifen a couple of weeks (I took a two month break) now and I have the same seemingly non-ending cold feels like flu sickness! Anyone else?
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Hey Togethertolearn,
My psych, who is affiliated with my breast cancer treatment center, said that he had anecdotally observed that colds seem to last longer for women who are hormonal treatment.
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Nono, BluG.R., Together, Rlmessy...thank you. All I can say is ugh. As for talking to OBGYN I do not have one and would have to be referred. But the horrifying thought that this might be uterine related has indeed been in the back of my mind. Who am I kidding? It's the front of my mind! I am trying to push it to the back but it's not working.
Salamadra, I noticed that after radiation, which left me with a cooked lung, any sort of cough or respiratory annoyance was harder to shake off. I think colds that hang on longer can be a result of lungs that are no longer 100% optimal due to being nuked. SO if you have had radiation AND hormones, that could count as 2 strikes against lung functionality and recovery. Since radiation I am horribly sensitive to allergens that I never was before. If you have a lingering cough, try an antihistamine for a few days and see if that helps.
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runor - you can’t push it to the back. Go get it checked. Can you consultyour MO?
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rlmessy,
I’m glad your doing well so far. I’m still at 15mg. I have not had anything too noticeable so far. I will go up to 20mg tomorrow. I just saw tumeric listed. I thought that was a good supplement🙄. I am going to try to do my best, but I have to live too. I will enjoy my occasional wine at night too😄.
Cassie, I’m glad you have not had side effects. I take mine with lunch because I’m scared of not sleeping, but if I keep on going with minimal side effects, I may try it then.
Together, I’m just now getting over a nasty cold (praying it’s all gone by Friday
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runor, you are one of the posters here whose posts I look forward to reading. So I'm coming from a place of selfishness when I say please do get things checked on the GYN front because I want to keep reading your posts.
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I was taking Tumeric (Curcumon) and my MO told me not to take it anymore. You can probably use it for cooking but maybe not as a supplement
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I have a MO who is a major research geek like me which is why my BS put us together. When I wanted to try turmeric, my MO was hesitant at first. He asked that I give him some time to research and make phone calls. Eventually he agreed to letting me go on it and now tells all his patients to try it if they have the muscle/joint pain from Tamoxifen or AIs. He does suggest Gaia Turmeric since it's source in the US and he suggests one capsule a day. I'm not sure i could have done Tamoxifen without it! So some MOs are ok with taking it.
As to colds, I was getting them 3-4 times a winter after starting Tamoxifen. I hadn't had one in years before that so I really think it can lower your immunity. Someone suggested that I try olive leaf extract which I've now been on for about 4 years and haven't had a single cold since I started it. This past Christmas my nephew had the flu pretty bad but came to Christmas anyway. Well I get home a couple of days later and start to feel that scratchy throat thing starting so I double my OLE dose (from 1 capsule to 2) and within 48 I was completely fine! I really think that stuff is pretty amazing. I've put my DH on it because he's doing a lot flying now and so far so good (knock on wood!).
And runor--About a year into tamoxifen I developed the extreme pot belly like you. I actually did some research started taking a good probiotic which definitely helped. Eventually though I asked my gyn for a transvaginal ultrasound and they found my uterus was enlarged along with some cysts and thickened endometrial lining. These are all known Tamoxifen SEs. We did some watchful waiting for about a year but eventually I did do a total hysterectomy. Definitely helped with the pot belly issue but have to say 2 years after finishing Tamoxifen and I still have it to a small degree despite weight loss. So maybe try a probiotic if you haven't already but I definitely think you should find a GOOD gynecologist. My surgery was 1 night in hospital, 2 days of Tylenol and driving for errands by day 5. I felt really really good after my hysterectomy!
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Nutrition - seems like information is constantly changing. Have gone through surgery, radiation, tamoxifen, chemo, more surgery, AI/tamoxifen, surgery, AI and Ibrance. Soy as food was always considered fine, but stay away from supplements and oil. Soy milk, well maybe limit. Don't use, so not an issue for me. Grapefuit...... with Ibrance, they say not to consume, interferes with how Ibrance dissloves and is taken up, Seems like grapefruit is on the hit list for other drug interactions (cholesteral drugs?). Asked DR again about soy, since there has been a suggestion that might interfere with Ibrance, supposedly acts like tamoxifen. Her thoughts, tamoxifen is used with some patients on Ibrance; as food ok for several servings/wk; no supplements, no oil.
Ibrance and Arimidex. Supplements include Mg, D, biotin, C, Turmeric(Curcumin), Gluchosamine-Chondroitin,BoneUp(multi with Coligen),Thorne (another multi), Melatonine(at night).
2009 ER+ left breast. 52 yrs. Lumpectomy, Sentinel node removal, negative. Radiation 6 weeks, tamoxifen 5 years. Dense lumpy left breast, normal right. Acupuncture offered at facility as part of integrative medicine. It really helped with anxiety/stress during radiation treatment.
2016 ER+ left breast. Probably a new cancer, but unknown. 4 rounds TC Aug-Oct 2016, Bi-lateral (my choice) Nov 2016, no reconstruction. 2 sentinel nodes remove, negative. Cold Capping using Chemo Cold Caps (DIGNICAP not available). Anastrozole 1 mg starting May 2017. Joint issues noticed immediately. Stopped Anastrozole after 3-4 months due to joint stiffness in. After several months of no AIs, fingers were feeling better. Started tamoxifen March 2018
10/2018 noticed stiffness and some trigger finger again. Was eating meat a lot more (daily) than normal. Usually 1-2 /wk. Have cut way back on the meat, seems to help, but one finger still very prone to trigger finger. Trigger finger seemed to be getting better, but now 4/2019 seems worse, is it the break from added turmeric to meals?
6/18/2019 Noticed Swelling in R-arm, opposite side from where lymph nodes removed. . Could have been swelling earlier but wearing long sleeves. Ultra sounds for clots, Trip to urgent care. They did ultrasound, concerned that there might be a clot, there was not. 7/2/2019 lymphatic therapist recognized that there was something very wrong and sent me back to the DR.
8/2019 CT, Breast/chest , neck/thyroid ultra sound
9/2019 DR ordered biopsy, said it could be lymphoma, cancer, benign lymphatic. Biopsy R-axilla. Cancer. Genetic test showed no known markers (20+ looked for)
9/29/2019 PET scan, no indication of spread. Arimidex and Ibrance prescribed to shrink tumor prior to surgery, if needed.
10/2019 – Stopped Tamoxifen. Started Arimidex and Ibrance. Brand name Arimidex so far does not seem to have the SEs that generics did, but stiff/trigger finger on left middle finger returned.
1/2020 CT showed tumor in Axilla shrunk (hooray!!) from 2.3 to 1.1 but picked up something in lower bowel. DR consulted a DR I saw in 2011 who compared it to 2011 image, said they had not grown, but one has changed and was starting to obstruct.
2/14/2020 Happy Valentine's Day. Surgery removed to remove, waiting for pathology. 2/25/2020 – Pathology. Not cancerous. Hooray
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I think I will stop the tumeric capsules just to be safe. My MO did say that it was better to take a multivitamin and she did magnesium was ok (I can’t remember what else I just know she said something about supplements and estrogen Thanks!
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Part of my belly problem is large fibroids. T ses sometimes gives pelvic discomfort. Was told T can create angry fibroids. Going in on thurs to do the dreaded pelvic u/s. Last one was 2017. That's the one you drink 32oz water and hold it while they insert the device in your vag. Can't wait!
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Edj, I can see me at my doc office, "I'd like you to investigate my vagina so that I can keep writing." Doc: "you hold your pen with your vagina?" Me: "Something like that."
I did have a bladder, lower abdominal US last year and all was found to be perfectly normal. Maybe I'm just a fat slob? But this gut, my god, it's like I have Jabba the Hutt under my shirt. But yes, if I can't get a grip it warrants an investigation.
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What can I say, you have a talented vagina!
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runor - I don't want to start a controversy, but do you have a planned parenthood? You could call them, they might see you without any refferal, or at least I know they'd answer questions over the phone (they've answered mine before). If you're comfortable using them that is, you may want to call and find out what they can or will do.
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Together, I do think we have some Planned Parenthood places around here. I really haven't dealt with them at all or paid much attention. I always thought they were a birth control (or not) sort of organization. Not so much experts on tamoxifen induced menopausal weight gain? If I do need to see an OBGYN my regular doc will refer me, and I will stand in line for my 8 - 12 month wait. Tick, tick, tick.......
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Runor, I too have gained gut weight on T. When I saw my family doc last week for my annual check in, she questioned if the MO would take me off T due to the weight gain...I don't see him until May though. Last summer I did ask my GYN about an ultrasound to have a benchmark for changes while on T, but she said I was normal...that was after 2 months on T, I'll see what she has to say this summer after a year and 15 pounds. UGH.
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Anybody get plantar fasciitis while on Tamoxifen.
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Prahan, I have had extreme, horrible plantar fasciitis my whole life. This is fancy talk for heels that hurt like hell. I have had to wear custom orthotics since my early 20s because of my stupid, flat duck feet. Even in the house I am to wear shoes and my arch supports to keep me from becoming crippled. Under x-ray you can see where the tendon that runs along the bottom of the foot has come under so much strain that it has pulled bone off the heel. My heels are literally fractured, the bone is split. My foot doc threatened me with surgery. The pain, at times, is excruciating.
Weight gain is the number one culprit in a flare of my p.f. When I was pregnant I almost DIED from foot pain. I spent months, every night, rubbing ice on my heels to get the inflammation under control. Months. But after baby was born and weight went down, feet got better. I cannot say that tamoxifen has flared my foot problems, but weight gain sure as heck has! Tamoxifen affects my joints, where my bones articulate, but your heel is not a bone that moves. It has no joint in it. I know my feet would be better if I weighed less. In my experience weight gain and foot problems are directly related.0 -
Thanks for your reply runor. I am 38 now . For the past 6 months getting horrible pain. Doing all stretching exercise to get rid. This is the first time I am getting. Yes I am overweight, border to obses.
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Random thoughts.
There was a shortage, globally, of tamoxifen BEFORE this Corona virus outbreak.
Just watched an infectious disease expert talking about how most of the drugs considered critical to people's health are manufactured outside the USA (and I will assume Canada) . Manufactured in countries that are now in crisis. Or soon will be. This is going to disrupt many supply chains. Life saving drugs among them.
I have a feeling that tamoxifen is NOT on the critical life saving drug list. I am wondering if this shortage is going to get worse before it gets better? I usually get my tamoxifen 3 months at a time. But the last two times I picked up they only gave me one month at a time. My current supply is down to a handful of tablets.
I ask myself, if ever there was a time to cut back to 1/2 a tablet every day, maybe the time is now. Or even cut back to 1/2 a tablet every other day? Just to ensure that some level of tamox can remain in my system. As it is I take a whole tablet on Sunday, 1/2 Monday, 1/2 Tuesday, whole tablet on Wednesday, 1/2 Thursday, 1/2 Friday, 1/2 Saturday, etc.
So if countries are worried about not being able to get critical drugs, how important will it be to start manufacturing tamoxifen? I'm guessing not very important. What can I do about that? Not much. Maybe drastically reducing my consumption will mean I have SOME tamox in me. Maybe it will be doing SOME good. This might be better than no tamox at all? How does anyone know if this will be necessary? I don't even think the pharmacists know. They are every bit at the mercy of bigger forces as we are. They do not have crystal balls to tell the future.
I have no answers here, these are just the thoughts rolling in my head. I will need more tamoxifen pretty soon. What if I go to get some and find the cupboard is bare?
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Can you contact your pharmacy now and let them know when you hope to get more and ask if they have it or will be able to get it? If not, you could ask your doctor what to do and maybe call around to other pharmacies?
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Runor I hope you are able to get the prescriptions you need. About 90% of Rx are generic, and most including ingredients come from China and India. Getting "helpful" advice from leaders about stocking up makes me realize just how out of touch they are. Insurance will seldom let you stock up. Sending everything over-seas/centralizing for cheaper production makes us very vulnerable to any crisis - medical, environmental, political,........
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With my profile I don't feel comfortable not taking tamoxifen. But it will be what it will be. Unfortunately unlike AIs that has 3, T is it.
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Hey Artista,
That's only kind of true. There are actually other SERM drugs, but they are not currently approved for recurrence risk reduction in premenopausal women.
I couldn't deal with the tamoxifen side effects - I tried changing up timing, doses, brands, etc. But it was basically sedating for me. I read a lot about toremifene and asked my doctor if I could try that instead. They're doing a lot more studies of it now in China, where apparently the genetic variation that make some people less able to process tamoxifen is more common. Even though there isn't as much evidence for it as for tamoxifen, the evidence that exists is really promising.
My doc wasn't excited about it at first because she's pretty conservative and felt like OS+AI was more tried and true. It doesn't actually have any more studies than toremifene for premenopausal women, but more clinical experience. But her own senior doctor said that he had advocated to the FDA for approving toremifene for premenopausal women and then she agreed for me to try it.
I hope tamoxifen works great for you! But I feel like the misrepresentation that tamoxifen is the only option for premenopausal women is kind of dangerous actually and maybe ends up with more women going off meds for other. So I have been trying to speak up about it when I can.
So far the toremifene side effects have been completely livable for me, and I'm so relieved.
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Prahan, no plantar fascitis here, but I did develop De Quervains Tenosynovitis, an inflammation of the tendon sheath in my wrist. Inflammation of tendons including tendonitis, is a fairly common side effect of Tamoxifen.I had to wear a splint on my arm for five months, along with a lot of physiotherapy but still no results, so I had a steroid injection into my wrist, which has helped but still having days when I have quite severe pain.
Apart from this 'bonus prize' of tenosynovitis which I wasn't expecting, the only side effect I get now is the hot flushes. I think the mood swings are not as bad as when I started taking it in September.0 -
Thanks for the reply worrythepooh.yes hot flushes side effect is somewhat tolerable.
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Is anyone having trouble refilling your prescription
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