Bottle 'o Tamoxifen

lala1

dtad--I have to admit that when I started with him, he wasn't quite so open. But in the last 3 years I've called him about numerous things so he's kinda gotten used to me. Plus, I think I'm one of the few who researches holistic possibilities myself and I've found quite a few things that work for me. As he's seen them work for me, he's become much more open to them. And he loves to research so I'm giving him even more stuff to do! When I met my BS, I told him I wanted doctors (like him) who were very much into the numbers of everything. I like to know what I'm doing, why I'm doing it, how it affects my recurrence percentages, etc. So my BS got me all docs like that. My gyn even calls me Google Girl because I like reading about all aspects of BC so much! The research helps me feel more in control. I had an ENT that would mention possible recurrence at every appointment I had with him so needless to say, I got rid of him! I'm a worrier and I don't need a doctor worrier!

live_deliciously

im taking vit d3 . 2000 ui each day. I've not heard to not take within 2 hours of tomoxifen before. I take it at night with melatonin, tomoxifen, vit d. Anyone else hear that. I'm so afraid I'm going to do something that will counter the tomoxifen from working. I'm 99% er/pr

Wendy3

Mom of twins I have identical boys who will be 18 March 4 th. They have been amazing throughout all of this . They are adjusting to city life now that we are in Vancouver having grown up on farms so for them everything is different. Hard to believe 18 already I look at them and they are each 6 foot 3 and I see my little babies. I also have a twenty year old daughter who has been the best big sister they could ever have. I always tell myself anything is possible as long as love is present and I have that in spades.

I'm  kind of wondering if rectal bleeding is a symptom of Tamoxifen is that even possible?

stage1

the way I understand it, and Kaiser gave me a pamphlet on calcium and D....1200-1500 mg calcium. D3 is included in the calcium that I buy. So, twice a day gives me 800IU total. Since my kidneys are having trouble, I am not taking extra D. A good thing to know is calcium citrate is better than calcium carbonate for constipation problems

Sloan15

I hadn't heard that about waiting to take calcium 2 hours of Tam, either. Dang. I've been taking things together. Well, that's why I'm on this site, to learn.

solfeo

I think the reason for not taking calcium within 2 hours of tam is because calcium can interfere with the absorption of any medication, and other vitamins and supplements as well for that matter. The higher the calcium dose the more potential for interference.

My MO can be frustrating, because she is supportive and even encourages me to work with my naturopath, but she doesn't know much about alternative and complementary medicine and won't take the time to research anything. Whenever I ask her a question about a supplement from a medical standpoint, 100% of the time she says she doesn't know.

My ND on the other hand doesn't know much about supplement interactions with tamoxifen and also doesn't research much. He gets all of his info from integrative cancer conferences he attends, which often cover more general subject matter that doesn't necessarily apply to my specific circumstances. And he's the only thing that passes for a natural cancer expert in my state. There is not one single integrative oncologist here so I'm pretty much on my own in the research department. I love my supplements and it has been very disappointing to find out that a lot of supplements have the potential to interact unfavorably with tamoxifen. I do take quite a few that I decided were probably safe, but there are several I wish I could take that I don't because they could reduce the effectiveness of tam. Chemo wasn't recommended for me due to my low grade tumor and low Oncotype recurrence score, so I really need the tam to work and I don't like to take chances.

RobinLK

Foggy brain link - it is real. Similar to peripheral neuropathy.... It affects the myelin sheath.

lala1

I have a homeopathic doctor who used to be a breast cancer doctor before he retired and turned to alternative meds. Fortunately he's not to far from me but I think he sometimes does phone consultations. I wonder if that would be possible for people who don't have access to these types of doctors. Maybe give a few a call and see if they'd do phone consults. Maybe even try my guy who's name is Dr Robert Prendergast at Aiken-Augusta Holistic Health in North Augusta, SC. See if he'd do any type of phone consult. You can google him and read about the book he wrote called Breast Cancer: Reduce Your Risk with Foods You Love. He even trained with Dr Weil at one point. Anyway, might be worth a shot for those that don't really have other alternatives. This was the guy who turned me onto turmeric and ginger for my Tamoxifen joint pain after my MO said to use Osteo BiFlex which did nothing for me. Now my MO tells his patients to try the turmeric and ginger!

Englishmummy

I hear you. My onco is purely allopathic, won't consider anything else but I do really like her, like you though, I find her lack of knowledge on anything else frustrating even about diet - I asked her about Resveratrol and it took me 3 tries to tell her it was grape based NOT grapefruit then I asked her about turkey tail and presented her with a study showing its efficacy. Her response, "Why ever would you want to ingest a turkey's tail?" My hubby was behind her, just rolled his eyes and shook his head. I laughed out loud. She is all over the newest studies and information for anything breast cancer and can quote studies all over the shop but she doesn't even consider alternative medicines - she says to me " you look fabulous, just keep doing what you are doing, but I don't need to know the details???". I just googled this morning and found a new intergrative clinic, with a naturopathic oncologist, which has opened in our area. I am thinking I may give them a shot? Would be nice if insurance covered it, they do cover other alternative medicines such as massage and acupuncture.

My hubby worries about me taking the Tamoxifen, despite my OB explaining that as long as I have my period she doesn't think the uterine cancer is a huge risk at all, she is more concerned about the vascular side of things since that seems to run in my family - she told me there was a much bigger chance of stroke/embolism - But he still thinks it is a trade off of one thing for possibly another down the line - I do sort of feel that way too but having it in both sides, being 41 and having young children, I am just not brave enough to ditch it (at all/yet?) and since I don't really have any SE's I'll continue on. I have set it on a calendar to review every six months and if I still feel the same I am going to take it if not, then I'll stop.

Does anyone else battle with taking it, despite no real SE - which I feel sort of guilty about. After all, others get horrid SE's but don't think about carrying on, I don' t have anything yet I torture myself about what it *could* be doing and whether or not to continue. Uggh. Perhaps an intergrative Dr could help with that?

superius

My MO is ok with regular supplements like vitamin, etc. But was surprised that she had never heard of Turkey Tail. & she's pretty young (vs older generation, set in their way of thinking..).

Anyway... I have multiple friends in the field (radiologist, drug developers, Onco researchers) said No. I was ok with that -- especially the person who suggested it said they get the pills from China. I think I would be more at ease with the idea if it's taken in the tradition form like people did for the last thousand years. pills from China... errr... no

Wendy3

Englishmummy I battle with it every night it's becoming harder and harder for me to swallow this stupid little white pill. I have minimal side effects joint pain not bad and sometimes nausea. However I'm worried about long term effects being stage four though I don't have much of a choice at this point. I tell you if my scan next week is good I'm stopping. Or at least I will discuss the possibility of halving the dose.

MomOfTwins98

I, too, worry every single day if the Tamoxifen is working and worry about every other thing I put in my mouth as to whether or not I am negating any effects. However, its what we've got and I pray that it is doing its job. Every evening at 5pm when I take it I say "please work" - As far as the interaction with other vitamins, I questioned the dietician and told her what my MO said. She smiled and said "that's why he's the Oncologist and I'm the dietician" - okay then. So, I take my Tamoxifen at 5pm and my vitamins at 7am. Of course, to add to the confusion, I also have to take Gabapentin which cannot be taken within 2 hours of magnesium which is in my Calcium pill so have to take that at 5am, noon, and 7pm. As many of us, have this ritual and have to be sure not to mess it up - I drink lots of herbal teas and she also wanted to check the ingredients but told me they're all fine - suggested I stay away from orange peel and not have the orange herbal teas. Not sure of that validity but, like everything else, I figure there are plenty of other teas I like so don't have to have orange...even if she's wrong.

Wendy3...we also live in a rural area. My daughter has three chickens although with the zoning here was a fight with the city and neighbors - she won. You wrote that you are Stage IV...was the BC found at that stage originally? I;m so glad your kids give you strength too! My husband works out of state and travels quite a bit. Going to be hard next year when my babies are off to college - they're only looking at close (within 3 hours), small, liberal arts schools and want to stay together so I know they'll not be too far...will still be so weird and hard. I cry when I think about it but know they have worked so hard and need to go - their first choice is about 40 minutes away so lets hope they both get in!! We're all country bumpkins and homebodies so used to just being here and together.

I too have never heard of turkey tail but will look it up

solfeo

Thanks lala1 for the recommendation. I just might give your guy a call. I was also thinking about taking a trip to another state for a consultation but my location is closer to the west coast. Can anyone recommend someone in California?

I hate taking tamoxifen because I don't think it works that great for everyone, you never know which group you're going to be in, but you can't take some of the supplements that are likely to pick up its slack. It was a really hard decision to take it but because I am still barely perimenopausal it was tam for the first two years, or ovarian suppression plus AIs. I'm too close to menopause to want to have my ovaries removed, and the suppression drugs are more problematic than tam.

The risk of uterine cancer is actually pretty low, especially in pre-menopausal women. I don't worry about that too much. I take a daily baby aspirin and fish oil to prevent blood clots, which also has probable other benefits for breast cancer. I do have several side effects but none of them are anything I can't live with so far. I do still need to see the ophthalmologist about the floaters so maybe that will change. I know it sounds weird but I've learned to appreciate my hot flashes as a sign the tam is working.

solfeo

Here's the issue with the orange peels and orange oils that orange flavoring is usually made from. Citrus peels and oils contain a flavonoid called tangeretin that has been shown to inactivate tamoxifen in studies. It hasn't been proven to have the same effect in humans, but it's better to be safe than sorry. Every once in awhile isn't going to hurt you, but you definitely don't want to be eating it or taking it in supplement form on a regular basis. Citrus juices are not supposed to be a problem because they contain only small amounts of tangeretin, but I still don't overdo it on the juices just in case.

You have to be careful because a lot of foods and supplements contain citrus flavoring. Even knowing I need to avoid it, early on I caught myself accidentally taking a fish oil supplement that contains orange flavoring because it didn't dawn on me since I had been taking it for years. It wasn't easy but I did find a high-potency fish oil supplement that contains no soy or citrus flavoring: NutriGold Triple Strength Omega-3 Gold.

Englishmummy

Wendy: glad I am not the only one that struggles. Keep us posted on your scan results, if they are really good sounds like the T works for you - My hubb was flipping out about the same dosage for someone that weighed 200lbs and for me,115lbs so I asked about 10mg dose and the Onc told me that real trials have been conducted on lesser dosage, those that were done were inconclusive. It's cheap as chips so they don't care to look at much else. Not to inspire conspiracy theories, I was told that the money is not in Tamoxifen but in the follow up visits and treating the side effects. No tamoxifen = no Oncologist visits. Drugs used for SE's are supposedly not all that cheap. IDK. I should take the pill, shut up and be grateful for no SE's, for now and like I said I'll review it in 6mths and see how I feel then.

Momof, I use an affirmation when I take it too. I say 'this IS working to keep my body strong and healthy." I did not mean to sound insulting about the Turkey Tail, apologies if it came across wrong. I was just shocked that my Onc had no idea what it was as there are numerous studies on it and other mushrooms for immunity boosting benefits.

Superius: did your inside sources say 'No" to all Turkey Tail? I am actually looking at a tincture....it is made here in the US

Solfeo, I know you are a prolific researcher and we did connect previously, conversing about Breast Defend, I take the PectaSol C do you still feel that is ok with the Tam?

Suzanne50

momoftwins98 - exchange surgery is when the swap out my tissue expander for a silicone implant. The TE is like a brick boob. Very uncomfortable so eager to get rid of it.

My MO says I can eat anything I want....even soy! Which I wouldn't eat. But he thinks the whole thing is hogwash. Plus since on tamoxifen which would protect me. But I am not saying I agree with him but I do think that there are extremes that are not necessary.

Everyone has to do what fits in their comfort level.

Scottiemom11

I have a fantastic MO. . .she looks up everything if I ask and she does not already have the answer. I have way too many docs (PS, BS, MO, OB, GASTRO and GP) and they have me on way too many meds. I also take mag citrate, calcium, D3, Glucosimine, multi vit and probiotics. MO has no problem with any of them. I've had baseline ultraasound, bone scan and upper endo. Am scheduled for colon and gallbladder scan this month. I'm beginning to feel like a medical guinea pig, but at least I will have baselines for everything. I'm just praying that my stomach troubles are stress related and that I don't have gallstones.

13 months on Tamoxifen and it's tolerable. I sent the monthly lupron shots packing do to terrible side effects.

Scottie

solfeo

Regarding these possibly offending foods and supplements, one good thing about tamoxifen is that it has a long half-life and builds up and stays in your system a long time. There isn't a lot you could do every once in awhile that would completely reverse its effects once it builds up to its steady state concentration (takes about 2-3 months depending on the person). There is more concern if you're taking something on a regular basis that reduces its effectiveness, and then if you're doing several of those things the effect would be cumulative.

I'll use Paxil as an example, because I'm pretty sure all of us have been told to avoid that.They found that the duration of time Paxil was used along with tamoxifen correlated with the increase in the rate of death from breast cancer. Women taking Paxil 25% of the time they also took tamoxifen had a 24% higher risk of death. 50% of the time was associated with a 54% increase, and combining them 75% of the time raised the risk of death 91%. There would be no reason to do this but you could probably even take Paxil once a month without hurting yourself.

Like I said, I am extra cautious because tamoxifen is all I have and it needs to work, but even I don't worry about occasional transgressions. I don't keep things in the house that I don't think are safe, but if I go to a party or restaurant I'm not going to freak out over an ingredient or two I usually try to avoid.

solfeo

Englishmummy - Sorry again for not getting back to you about the Breast Defend but I never really solved the issue in my own mind. Even though I would like to, I'm still not taking it because I haven't been able to satisfy myself that it is safe in people long term. My gut tells me it is probably OK, but there are some possible issues with the individual components. I may still end up taking it I just haven't dug deep enough yet. There was a study that was recently presented at the AACR 2015 annual meeting that looks really good:

BreastDefend enhances the effect of tamoxifen in estrogen receptor-positive breast cancer in vitro and in animal models in vivo

One problem of course is that it wasn't in people, and hardly anything behaves the same way in the human body as it does in a test tube and in mice. The other issue is that at least one of the authors owns the company that makes Breast Defend. From what I have read about Dr. Eliaz he seems to be on the up and up, but when there is money involved you never know. As far as I know the study has not yet been published in a peer reviewed journal, so we don't know what other scientists might think. I'm not sure if they plan to progress to human studies.

It would take so long to explain everything I have read about its individual ingredients, but I'll summarize it this way. Tamoxifen is metabolized in the liver by something called CYP450 enzymes. Because tamoxifen itself isn't what does the job - rather it is its active metabolites - anything that interferes with that conversion process can theoretically reduce its effectiveness. Some of the ingredients in Breast Defend interact with CYP450 enzymes. Quercetin, for example, is a moderate CYP2D6 inhibitor. CYP2D6 is the CYP450 enzyme primarily responsible for tamoxifen's metabolism into its active metabolites. Paxil is another CYP2D6 inhibitor. See my post above for information about the danger of that combination.

When I have more information I shall surely share it, but for now I'm erring on the side of caution.

superius

My MO said it's fine with Soy in it's nature form, beans, tofu, etc -- of course not eating it every day. But NOT Soy in concentrated forms like processed soy protein, that kind of stuff.

this is my friend's reply regarding Turkey Tail:

"Speaking as a drug developer, we traditionally do not recommend taking herbal supplements while on active treatment with another anticancer therapy, especially if the label already has a caution. I think the potential for detrimental (and unknown) drug interactions outweighs any benefit you may experience. But I do understand that there are studies showing the benefit of "turkey tail", therefore, definitely ask your oncologist (...but I bet the answer will be no)."

TinyDancer5

I have been on Tamoxifen for 21 days and I take it with breakfast. When will the nausea go away?

solfeo

Everyone is different. I only had nausea for a few hours on the first few days then never again.

Suzanne50

I am into my 2nd month of tamoxifen and I think my night sweats are getting less intense. The other night I barely had any! Hoping that this is it but who the heck knows?! My hair is growing in like crazy so I can't say it is causing thinning.

Scottiemom11

Suzanne, my hair is considerably thicker as well and growing faster. Whereas my nails are paper thin.

Scottie

MomOfTwins98

TinyDancer5 - The care navigation nurse had recommended that I take my Tam at night to avoid the nausea (or sleep thru it, she said) - so that's what I do - I take it at 5pm and have not had much nausea from it at all - Did in the beginning but it seems to have stopped - I've been on about 10 weeks (started Nov 30). Unfortunately, I started Tam the same week as my radiation so never was sure what was causing what symptoms. I hope your nausea passes quickly. The other thing they recommended was taking it with food so I take it, then have dinner. I wish you well!

Suzanne50

I haven't noticed any difference with my nails. Interesting. I also haven't been nauseous. I did think it constipated me for a bit but I seem to have moved past that. Thankfully!

Anonymous

The hot flashes don't seem to end with me! But I'll take them, it gives me a sign that it's doing it's job. One thing I notice is that I get a headache after taking my pill (at night). It's gotten better though.

But I do have a question: what kinds of blood tests should I ask for at my follow up with my oncologist? Anything specific I should ask about? Thanks.

hsant

LovingIsLiving, my oncologist checks my tumor markers every 3 months. I get the CA 27.29 and the CA 15-3 blood tests

solfeo

My MO checks my liver enzymes.

Anonymous

Thanks hsant and solfeo. I will ask about tumor markers and liver function tests.