Bottle 'o Tamoxifen

There has been some misunderstanding about Soy product and Tamoxifen but according to my research, the phytoestrogens in soy product is not estrogen and it is good for you while taking Tam. Eg. Organic soy products and miso.

Tofu is recommended for breast cancer although it should be avoided during radiation treatment. (link goes to the same site you cited)

BTW I do love that site, so helpful.

Well I have to periodically recheck what I've learned from there--I had it in my head that soy was off limits always. Nope. And I hoped grapefruit would be OK for me since I've opted out of tamoxifen. Again nope (with much sadness, I do love grapefruit).

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.

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.

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.

runor - you can’t push it to the back. Go get it checked. Can you consultyour MO?

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.

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!

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!

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. 

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.

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.

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. 

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?