Bottle o Tamoxifen
Comments
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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.
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celexa has the makeup as lexapro. That's what i take in the am, T at night.
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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.
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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
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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!
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Bondsy,
Here is a link to a recent article that you might find interesting: https://www.nejm.org/doi/full/10.1056/NEJMoa170183...
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Bondsy,
Here is a link to a recent article that you might find interesting: https://www.nejm.org/doi/full/10.1056/NEJMoa1701830
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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.
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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?
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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.
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Thank you Scrafgal and Iala1. The article was very interesting. I'll ask my oncologist about the Breast Cancer Index test.
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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
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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.
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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.
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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.
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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.
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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
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Runor that's so awesome and gives us all hope!!! Sending good vibes your way that the pain stays away for good! xxx
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So happy for you, Runor! Hoping for continued pain-free days ahead!
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Runor, wonderful news about your pain, We all have something to look forward to!
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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!
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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 0 -
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
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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.0 -
Also, for anyone that's interested....
Here are a list of previous and current studies and research that I could find about the topical Tamoxifen, sometimes also called 4-OHT, Afimoxifene, 4-Hydroxytamoxifen (4-hT, OHTAM).
I've bookmarked them and will be asking my MO about them, since I am still on the fence about oral Tamoxifen due to all my previous health complexities.
Hope this is helpful and perhaps encouraing for others, as it was for me. If it's not available now, at looks like the future may hold an option...fingers crossed.
Neoadjuvant percutaneous 4-hydroxytamoxifen decreases breast tumoral cell proliferation
Finished 2005
https://www.ncbi.nlm.nih.gov/pubmed/15860853
Study Compares Tamoxifen Gel With Oral Tamoxifen in Women With DCIS
Finished 2014
http://www.ascopost.com/News/17397
A randomized phase II presurgical trial of transdermal 4-Hydroxytamoxifen gel versus oral tamoxifen in women with ductal carcinoma in situ of the breast
Finished 2014
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4101910/
Phase IIB Trial Studies How Well Tamoxifen or Afimoxifene Works In Treating Patients With Estrogen Receptor Positive Breast Cancer
https://clinicaltrials.gov/ct2/show/NCT02993159
Began 2016 ( Currently recruiting - last updated 2018)
Inhibition of breast cancer with transdermal tamoxifen-encapsulated lipoplex
Finished 2016
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4759757/
Trial of 4-OHT Gel in Women Aimed at Reducing Dense Breast Tissue
Began 2017 (Currently Recruiting - last updated Sept 2018)
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Thanks for the info about then sleep meds / diphenhydramine info, I have been taking some before bed, hadn’t mentioned to my oncologist or maybe they would have told me it could work against Tamoxifen. Guess melatonin is prob my only option or I can toss and turn for the next several years , but I’m not bitter lol
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LOL Gifibee -- not bitter indeed! I think we're all there a few times. Know I am about my cross over from Cymbalta to Pristiq in order to actually take the darn stuff. Ha!
For falling asleep, besides melatonin I find L-Theanine with Suntheanine helps as well. Might be worth a shot if you need it. Goodness knows we all need better quality rest in order to heal! Good luck!
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thank you Spoonie for the suggestions
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Wouldn't that be something to use a lotion for recurrence prevention!
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Spoonie, great info and links! But I am still not 100% clear on the goal of the low dose trial. Is it to prevent random women from getting breast cancer in the first place? Or is it to prevent recurrence in women who have already been diagnosed? Those are NOT the same. I will have to scroll back and see if that is clearly stated. I've learned I have to pay close attention to what I read when reading studies. They work great to put me to sleep!
Edit, the study says it is looking at reducing the risk of breast cancer in people with radiation induced cancer! Okay ... not sure what kind of spin that puts on the outcome. So they are hoping to prevent breast cancer from occurring in the first place to people already having a radiation induced cancer and NOT using low dose to prevent a recurrence, as is the case with most of us here. Am I reading that right?
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