Bottle o Tamoxifen
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I had seen a gynecologist because of lower abdominal cramping/pain when I first started tamoxifen. An ultrasound showed a 7mm thick endometrial lining after only 2 weeks on tam, so he wanted to do a hysteroscopy to see what what going on and also to get a baseline. Well, I had that yesterday after my last radiation treatment.
Hooray that my uterus looked perfectly normal (!!) and I can rest easy that the thicker lining is of no consequence. He did find and remove a polyp that was on my cervix and sent it for pathology. He must have told me 3 - 4 times that it was nothing to worry about and just nothing. Well, there was a time that when a doctor said that I could just rest easy and not think about it again. But, after hearing one negative pathology report it will not be so easy to just forget about it until I get the results (appointment in one month) although I do think he probably has a good idea of what looks normal and not.
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stage 1- thanks for the info on magnesium, I'll look into that. I have blood work now every 4 months, so far normal.
Keep walking- I did baseline ultrasound before started tamo and 6 months into it I too had a polyp on my cervix - results not cancer. Repeat every six months now
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The information seems to differ depending on who I talk to - I saw the dietician at our Cancer Center and she has me on 400 calcium and 1500 Vit d but said it cannot be taken within two hours of the Tamoxifen. She also said no grapefruit or flaxseed - My MO said "you can absolutely have grapefruit" - Don't love grapefruit so staying away:-) just to play it safe. I had some wirk done at the Lymphedema clinic for preventiona nd she was not good and really hurt me - now in pain and again, Drs differ onw hat pain medication I can take. I try to take so little but really hurting and have to get to work and get through the day.
when I started Tamoxifen, found large ovarian cysts. I am nervous about the uterine lining but my OB said not to worry...it is thicker but she said it is normal.
Keep Walking...Yay on finishing Radiation. For me, it was bittersweet but glad to have it over. The techs became such friends while I was there. I see you are in Israel..my sister lived there for 4 years and my children, now seniors in high school, are talking about maybe doing birthright in a couple years. I've been once, a very very very long time ago.
I just use prune juice and Benefiber for the constipation - the Tamox and Gabapentin together are causing all sorts of issues with that. They told me not to take extra magnesium but I did see that it is in my Calcium pills. They also suggested Colace but I've had rectal bleeding and it specifically says on the bottle not to take with bleeding so, not going to take it.
Hope everyone has a good day!
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lala Just want to say that I think you are very fortunate to have a doc who not only listen to you about complimentary medicine but will actually research it! IMO the combination of conventional and complimentary is the way to go but most docs are not on board. Good luck and keep us posted...
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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!
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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
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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?
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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
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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.
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Foggy brain link - it is real. Similar to peripheral neuropathy.... It affects the myelin sheath.
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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!
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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?
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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
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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.
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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
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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?
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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.
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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
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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)."
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I have been on Tamoxifen for 21 days and I take it with breakfast. When will the nausea go away?
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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.
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Suzanne, my hair is considerably thicker as well and growing faster. Whereas my nails are paper thin.
Scottie
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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!
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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!
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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.
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LovingIsLiving, my oncologist checks my tumor markers every 3 months. I get the CA 27.29 and the CA 15-3 blood tests
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Thanks hsant and solfeo. I will ask about tumor markers and liver function tests.
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I meet with my MO on the 16th. What questions should I be asking? I'm need to start writing them down. I'm 7 months post surgery, 1 1/2 months on Tamoxifan. I'll make sure they do tumor markers and liver function tests, but anything I should be asking for?
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I stopped in to the hair dressers today so my daughter could get her eyebrows waxed. I had made an appt. for a hair cut
but changed it for her when I realized there just wasn't enough hair to cut. Everyone there has been awesome since this whole business started, and one of the ladies was treated for BC over 20 years ago and has had no trouble since then. They were all saying how thick my hair is, and seeing 'the ginger' in my hair. Kind of nice since all I see right now is mousy grey with ginger highlights when the light is shining on it. :-) patience patience patience.....Edited to add.. I see my MO April 28th and there's been no talk of any follow up tests or the like. What will be, will be I guess.
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Can't remember who posted they couldn't find any BC women in Houston. I get my "posts" via email and don't see the one I am referring to here on the list. I live in Katy.......just west of Houston.
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