Bottle 'o Tamoxifen

Lula73

Taking a Benadryl for an allergic reaction is not a problem. However, taking it for days round the clock cancels out your tamoxifen for those days. A lot of people take Benadryl daily for seasonal allergies and/or to help them sleep (it's the PM part of Advil/Tylenol/Aleve PMs). Taking it for days is where the danger lies. So, save Benadryl for when you need a quick release antihistamine due to allergic reaction to something. Use Claritin, Zyrtec, Allegra, or Xyxal for all other antihistamine needs including colds/flu & seasonal allergies. Plus these antihistamines typically cause far less drowsiness than Benadryl does.

Veeder- 10mg Meclizine is what is most commonly prescribed for vertigo unless you're experiencing nausea/vomiting so bad that you can't keep it down. The phenergan suppository is recommended til you can take the meclizine and keep it down. Vertigo can last months to years so making sure you're taking the one that doesn't interfere with tamoxifen is important. By the way, you don’t need a prescription to get meclizine...it’s the active ingredient in the 24hr less drowsy Dramamine (take 2 of them.) I've posted the studies and the explanation for why the 20mg dose is given vs prescribing it by weight several times in either this thread or the femara thread. I'll see if I can find it and link it or copy/paste it.

Lula73

Veeder- here’s the explanation on dosing by weight and a link to lower dose tamoxifen vs standard dose tamoxifen comparison study that also includes a compilation of multiple other studies looking at the same thing in the conclusions section. Bottom line is that theoretically lower dose of 10mg but not lower than that should lower recurrence risk similar to 20mg but there are no long term studies that demonstrate this to back up the theory/hypothesis. Keep in mind that every medication molecule that gets studied starts with a hypothesis on what it is expected to do. Only 1 out of 10 of those medication molecules ever make it to market. Those that don’t were either didn't do what was expected, severity of side effects outweighed the benefit, or it didn’t meet the efficacy & safety thresholds of current meds in the same class on the market today that treat the same thing.

Why isn’t tamoxifen dosed based on my weight?

There is a lot of discussion on various boards in multiple disease states about why a thin person takes the same dosage as a heavier person. Dosing of medications depends on several different factors and weight isn't always one of them. (Weight is usually a factor for children's dosing as their bodies are not fully developed and so much smaller with far less blood volume than an adult.) Let's take ibuproen or tylenol as an example: dose is based on weight in children but not adults for this very reason. We also know from phase 2 trials that there is an overdose threshold for both. But you likely don't think twice about popping 2-4 ibuprofen/2-3 tylenol at a time for a headache even though the bottle says to take 1-2. Very similar to pain relievers, when it comes to AIs and tamoxifen, weight is not considered a factor based on results from clinical trials. The AIs (as well as practically every other med on the planet) have been tested to find the dose that delivers the greatest efficacy with manageable side effects. Dosing tests are done in phase 2 clinical trials. This is where they test different doses for efficacy and analyze differences in dose vs weight, vs severity/duration of disease, etc. Phase 2 trials can be harder to come across in the public domain and may have to be requested from the pharmaceutical manufacturer. Phase 3 trials are the ones where you really see just how effective a given dose is as that's when they test for efficacy, safety and longer term outcomes. If it makes it through Phase 3 trials then you know the med is as effective/as safe as or more effective/safer than the gold standard drug that was first developed to do what the particular drug does and/or compared to placebo. If there is no gold standard drug in existence then its studied vs placebo for the desired effect with manageable side effects.

Link to lower dose studies of tamoxifen

https://academic.oup.com/jnci/article/95/11/766/2520250

Spoonie77

Runor --> I totally agree with you that taking a antihistamine once every so often or during a cold/flu/etc will DEFINITELY not cause a recurrence. Like Lula laid out, many take them on a daily basis, as do I. I need them, not for allergies, but for my Chronic Inflammatory Response Syndrome. It keeps that and my pain symptoms as a little lower level. So, if no one had mentioned the interaction between Benadryl to me, I would have been canceling out the Tamoxifen completely. Going through the SEs of Tamoxifen for nothing. Like you stated, there is nothing, not even Tamoxifen, that can guarantee we won't have to fight this beast again. So I sympathize with your anger and frustration over "information without context". I was simply trying to show the interaction between the drugs and how it works in our systems for those what were not aware, and for whom like me, rely on that medication daily. I don't want a recurrence anymore than you do, and if I take Tamoxifen, I want to be sure I'm doing all I can to get the 40-50% reduction that's offered to me. Hope you understand.

Veeder14

Hi Lula73,

Thanks for the information. So far all my attacks of vertigo I have needed phenergen suppositories due to severity. Dramamine type meds have no effect. Neither does Zofran. However, mine seem to be acute and related to a sinus infection that responds to antibiotics so only have needed one dose of phenergen each time. Luckily not a long term problem or need for vertigo meds. Very strange MO did not mention any Tamoxifen meds interactions

runor

Any anger or frustration I feel is not with anyone who posts here. It is aimed at the writers and researchers who release this information without a real-world conclusion being added. To me, it's a job half done. Misleading.

For example, the research should have concluded with : " Taking a cold medication for a week to get you through a bad illness will not increase your risk of death by recurrence. It is reasonable and sensible to treat colds when they arise and not suffer needlessly thinking you are going to get cancer again by taking cough syrup. HOWEVER.... if you are a seasonal allergy sufferer who needs to medicate for months,this information is of special interest to you and you would be advised to seek out an alternative to Benadryl if you need to take an antihistamine for several weeks at a time". Now THAT, in my humble estimate, is information that is useful, contextual and actually makes me feel this information is for ME, the cancer patient, and not to impress other researchers!

Artista964

Thanks spoonie. No pm meds. are otc cold meds like dayquil ok? I try not to take meds but it's not fun being miserable either. Tia

Spoonie77

Runor -- > I hear you loud and clear. Couldn't agree more with your sentiment! I wish more researchers would think of it the way you stated.

Tia -- > According to http://stopcancerfund.org/t-breast-cancer/drugs-to-avoid-for-women-taking-tamoxifen/ here is a list other substitutes that should be safe to use in place of meds that interact with Tamoxifen.

I'm not sure about specific brands but if they have Diphenhydramine (an antihistamine) in them then they will interact with the Tamoxifen. Diphenhydramine or the drugs listed here https://link.springer.com/article/10.1007/s13318-018-0475-9 in Table 1 and Table 2 are known to interact/block/or change the metabolism of Tamoxifen.

Like has been said though, for the OTC cold/flu relief etc, if it's just here or there, prob no worries but if it's a daily or often thing, then ask your MO about alternatives or your pharmacist IMO.

Artista964

celexa has the makeup as lexapro. That's what i take in the am, T at night.

Veeder14

I'm just wondering if Probiotics are ok to take with Tamoxifen? I haven't ever tried any but it's been suggested to me.

PrincessButtercup

If they ever tell me I have to give up my Gabapentin, I don't know what I would do. Cry a lot, I guess

bondsy

I'm almost at the end of 5 years on Tamoxifen, and now I have to decide whether or not to take it another 5 years. Any ideas on this? I've had relatively few annoying side effects, just the usual (hot flashes, occasional insomnia, some joint pain and frequent urination, which I'm not sure is related to Tamoxifen or just old age.) Thanks for helping me decide!

Scrafgal

Bondsy,

Here is a link to a recent article that you might find interesting: https://www.nejm.org/doi/full/10.1056/NEJMoa170183...

Scrafgal

Bondsy,

Here is a link to a recent article that you might find interesting: https://www.nejm.org/doi/full/10.1056/NEJMoa1701830

Spoonie77

I hear ya Princess Buttercup. Hearing that I had to give up Cymalta, the only anti-deppressant that worked wonderfully for me, in order to take Tamox, really was a punch in the gut. Still haven't gotten over it. I haven't even been able to start Tamox as I've felt just horrible on the Pristiq all by itself, despite it being a direct transfer over the past 6 weeks. I feel alien and not myself. Aggressive even. Totally not who I am. I miss the old me on Cymbalta. Another reason, why I question whether I can even manage a year on Tamox when I start. Le Sigh.

Salamandra

Hey Spoonie,

I've been on Wellbutrin for ages. My MO offered to let me do ovarian suppression plus AI if I felt it was important for my mental health to stay on Wellbutrin.

I'm giving it a shot to come off the Wellbutrin. But it gives me a lot of peace of mind to know that if I felt it was not sustainable, I'd have another option.

Is that something your MO might offer for you?

lala1

Bondsy---Would it be possible for you to have the Breast Cancer Index test done? They do it on your original tumor sample when you reach 5 years on Tamoxifen. I had it done and it showed no benefit from continuing Tamoxifen so I stopped at my 5 years. It was a little scary for me to stop but my MO suggested I treat it like AA and just go one day at a time. He even gave me a 3 month refill so if at any time it became too overwhelming for me, I could restart it. I found that just having it there was reassuring enough for me and now I'm 10 months from my last pill and doing fine. I think the BCI test was just the right thing to help me decide whether to continue. And in full disclosure, despite no benefit from continuing Tamoxifen, I also came back as "high risk" for recurrence, albeit at the very low end of the range. So it made my decision tougher than it might have been since only a few percent of people have this result. But I still decided to stop and like I said, I'm doing really well.

bondsy

Thank you Scrafgal and Iala1. The article was very interesting. I'll ask my oncologist about the Breast Cancer Index test.

bondsy

Iala1 - I just did some research on the Breast Cancer Index test and unfortunately found out that I'm not eligible for it because the original cancer was in one of my lymph nodes:

Who's eligible for the Breast Cancer Index test?

You may be eligible for the Breast Cancer Index test if:

• you were diagnosed with early-stage (stage I-III) breast cancer
• the cancer was hormone-receptor-positive and HER2-negative
• there was no cancer in your lymph nodes (lymph node-negative disease)
• you've been taking hormonal therapy for 4 to 5 years and want to know if taking hormonal therapy for more time will be beneficial

runor

Not sure where to post this so am posting it here.

I woke up this morning and realized I was not in pain. Oh, I had joint pain from the tamoxifen, all creaky and stiff like the Tin Man. But I do not have breast pain.

Breast pain started mid 2016 and didn't quit. I thought it was menopausal hormone changes and that's what finally urged me to have a mammogram, when the ache in my boob was unrelenting for at least 6 months. Then there was a 'thing', then a surgical biopsy, then a lumpectomy and then radiation and at no point in ay of that did the pain stop. I went to bed each night with my boob, armpit, side and ribs, often my arm, swelled from lymphedema, and it hurts. It aches. I would wake up and the first thing I would notice is that sitting up, that shift in my breast, hurt. And it would hurt all day.

It's gone. It is finally gone! Almost a year and a half since radiation ended, it took that long for the boob to settle down (damn rowdy boob!). BUt today I sat up in bed and thought, hey! I don't hurt! I feel no pain! Yes, I still get swelling, but not as bad. Have learned I have to manage it. Have learned that some bras are worse than others for causing swelling to build up. So I am feeling pretty happy about this and I wanted to share it here with you ladies!

BONDSY - I often wonder how I am going to feel when I go off tamox after 5 years. Will I feel like I have been thrown into the sea without a life raft? I am toying with the idea of staying on for another 5 years, but only taking a 20mg (or 10) tablet twice a week. In my mind (not backed by any scientific proof whatsoever) this feels like a middle ground that might make me feel a little protected while reducing some of the risks associated with tamox, since I will be exposed to slightly less of it. That is my theory anyway. It may be completely bonkers.

Veeder14

Runor,

That's great your pain is gone. I guess it just takes awhile. Something I noticed is that the area near the breast incision that feels like a blob/heavy/scar tissue is smaller than it was after getting treatment from the Lymph OT. However, after being off the Tamoxifen for almost 3 weeks, the area is even smaller and more pliable. So I guess the Radiation does cause the skin/scar tissue to be thickened but I'm guessing that depriving the breast of hormones for years even makes it worse.

bondsy

Runor, sorry to hear you have been suffering so much pain, but so glad it's better now. I also had some breast and arm pain, especially from the radiation, and it lasted about a year. Thanks also for your advice on Tamoxifen. I'm not sure if that plan would work for me - I'm an either all in or all out kind of person. I'm still on the fence about whether or not I'll continue for five more years. I have until February to decide.

runor

Bondsy, knowing your SELF and your comfort level and what you need to operate in the world, that is half the battle with this cancer bullshit. I think when we move forward based on what we can tolerate or what we need, then we feel at least a little in control. Because losing control, that's a whole other issue. Being sucked into the medical vortex, that's a big thing. One day you're living your life and then FOOP! sucked into the machine. Thank god FOR the machine - but still, it's one hell of a rough ride!

I am taking only half the suggested dose now. So knowing ME, I know that if things get too miserable I will throw in the towel completely and say to hell with this. I didn't want that to happen. Taking half a dose for 5 years was my compromise. Interestingly, on half a dose I still have the full deck of side effects including (and I really hate this) memory loss. Ask me what I did today, I literally can't remember. (besides, it's pretty boring so who's paying attention anyway?) But I had to be comfortable with my dose decision and I am. My oncologist isn't, but it's not his vagina turning into a shrivelled piece of beef jerky, is it? Know thyself - good advice.

Rah2464

Woo-hoo Runor!!!! That is wonderful news about your pain! So sorry that it was so extensive for so long but thank you for sharing to give hope to the rest of us

vampeyes

Runor that's so awesome and gives us all hope!!! Sending good vibes your way that the pain stays away for good! xxx

PrincessButtercup

So happy for you, Runor! Hoping for continued pain-free days ahead!

Lomlin

Runor, wonderful news about your pain, We all have something to look forward to!

Beaverntx

Runor, thanks for providing hope on one of my down days. Happy for you that the pain is gone and hopeful for me that mine will do the same. However my pain doesn't hold a candle to what you described; sorry you have had to tolerate so much.

Here's to good days ahead!

Spoonie77

Just an fyi to anyone who's interested in studies that are following low dose (5mg daily for 2 years) Tamoxifen - there is one underway and should be publishing results within the next year. Might be a good one to keep an eye on, although I wish the sample size was larger, but perhaps there are other studies underway as well.

Low-Dose Tamoxifen in Reducing Breast Cancer Risk

https://clinicaltrials.gov/ct2/show/NCT01196936

PRIMARY OBJECTIVES:

I. To determine the impact of a two-year course of low-dose tamoxifen (tamoxifen citrate) administered at 5 mg per day on surrogate endpoint biomarkers of breast cancer (BC) risk, including: mammographic breast density (MBD), an established radiographic biomarker of BC risk; cytomorphology and proliferative index, tissue biomarkers closely linked to BC risk; and sex steroid hormones and insulin growth factors, circulating biomarkers of BC risk.

II. To establish safety and tolerability of this low-dose tamoxifen regimen, assessing both objective measures (lipid profiles, clotting factors and bone metabolism markers) and patient-reported outcomes.

III. To examine the modifying effect of demographic, clinical, and molecular characteristics on the risk: benefit ratio from this two-year low dose tamoxifen intervention.

IV. To explore the relationship between this low-dose tamoxifen regimen and clinical measures of efficacy (new breast cancer and ductal carcinoma in situ [DCIS] diagnoses) and toxicity (thromboembolic events, reports of hot flashes and gynecological symptoms, liver function abnormalities, and other cancer diagnoses).

OUTLINE: Patients are randomized to 1 of 2 treatment arms.

ARM I: Patients receive tamoxifen citrate orally (PO) once daily for 24 months in the absence of disease progression or unacceptable toxicity.

ARM II: Patients receive placebo PO once daily for 24 months in the absence of disease progression or unacceptable toxicity.

After completion of study treatment, patients are followed up periodically for up to 10 years.

Study Start Date :	September 2010
Estimated Primary Completion Date :	November 2018
Estimated Study Completion Date :	November 2019

Salamandra

That is odd to me that they're comparing it only to people taking a blank placebo and not to people taking the states standard 20mg. And I wonder why stopping the dose after 2 years instead of 5. Still I guess every piece adds some more information

Spoonie77

Salamandra - Maybe the time frame is 2 years because other studies that have shown that taking Tamoxifen for 2 years demonstrated some effectiveness in reduction of recurrence?

https://www.breastcancer.org/research-news/2-yrs-of-tamoxifen-offers-long-term-benefits

As far as comparing it to a placebo, I agree, it's odd, yet there a tons of studies that document the 20 mg dose so maybe they hope to keep the issue from being clouded due to every person metabolzing Tamoxifen differently? IDK. Just my 2 cents.