Bottle 'o Tamoxifen

Spoonie77

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)

https://clinicaltrials.gov/ct2/show/NCT03199963

gigibee

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

Spoonie77

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!

gigibee

thank you Spoonie for the suggestions

Salamandra

Wouldn't that be something to use a lotion for recurrence prevention!

runor

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?

Nancy618

I have a lot of catching up to do!

First, I want to thank the person who explained the difference between AIs and tamoxifen. Very easy to understand.

I'm the one who was started on tamoxifen after cycling through all of the AIs. At furst, I had uterine cramps and went off until I saw a gyn and had an US and got the all clear, nothing is wrong.

I started back on tamoxifen and been on it about 5 weeks and I have to say, I'm very happy. No more muscle and bone pain, no more dried out everything, sleeping better, no more depression and mood swings. The hot flashes are much more intense, but don't seem to last long and none at night. My eyes are about the same, still some double vision off and on in one, but I'm hoping that the cataracts I developed while on AIs will not get worse.

The one side effect that really is scary for me is brain fog and memory loss. I don't know if it's my age or the tamoxifen. I have to write everything down, I forget names, I have a hard time getting myself going in to the morning.

I'm hoping things will remain the same as I continue, as I was very close to not taking any medication at all. Even if I am brain fogged, my body feels so much better.

Spoonie77

Runor --> You're welcome.

My basic take away from all of the studies (no matter what they are specifically researching i.e. dense breasts, DCIS, cancer prevention, pre-surgery reduction etc) from looking at the data/conclusions, is that the topical route has shown definitive and comparative reduction in various tumor markers/enzymes and as such, demonstrates that it functions similarly to the oral route does, but without seemingly effecting our entire system in the process.

I for one, would rather rub the dang stuff on my breasts and reduce my risk of blood clots, uterine issues, vision changes, and possible stroke, as I am sure all of us would prefer.

I'm looking forward to discussing this with my MO in 2 weeks.

Nancy618

Runor what a blessing that your pain is gone!

I am 20 months post lumpectomy x 2 and radiation. I still get hard, painful areas. My rad onc has sent me to PT twice and it always helps, as does yoga.

BlueGirlRedState

Spoonie - thank you for posting the links to the tamoxifen studies. I'm curious about the low dose study and metrics that are used to measure success. I keep asking about metrics to see if they really know if it is doing any good and tests to see if some Er+ benefit while others do not. I keep getting told that there are no tests, and that it is just monitoring for recurrence. It seems to be assumed that Er+ benefits from tamoxifen. One person posted a link (can't find it now) about tests on the tumor ( other than hormone positive) to see if Tamoxifen has any benefit.

Supplements: GAIA turmeric-joint; glucosamine-chondroitin; magnesium glycinate; biotin; potassium-iodine; low dose calcium; C; B-complex ; D; Fish oil. For a year or so after bi-lateral used Juven Nutritional therapy for wound healing with 7g arginine, 7g glutamine. Often add turmeric to meals.

2009 ER+ left breast. 52 yrs. Lumpectomy, Radiation 6 weeks, tamoxifen 5 years. Dense lumpy left breast, normal right. Acupuncture offered at facility as part of integrative medicine. It really helped with anxiety/stress during radiation treatment.

2016 ER+ left breast. Probably a new cancer, but unknown. 4 rounds TC Aug-Oct 2016, Bi-lateral (my choice) Nov 2016, no reconstruction. Anastrozole 1 mg starting May 2017. Joint issues noticed immediately. Stopped Anastrozole after 3-4 months do to joint stiffness in. After several months of no AIs, fingers were feeling better. Started tamoxifen March 2018

10/2018 noticed stiffness and some trigger finger again. Was eating meat a lot more (daily) than normal. Usually 1-2 /wk. Have cut way back on the meat, seems to help, but one finger still very prone to trigger finger.

BBwithBC45

I've been on Tamoxifen for about 3.5 years now. I've been having on and off aches and pains, occasional nausea. I learned to live with it all.

I've had ovarian cysts for years before my cancer diagnosis. A couple of years ago one of my ovaries got very large very quickly so I got scared and had them both removed.

Last week I saw my MO for my usual check-up. He asked me if I was bleeding. I wasn't.

This afternoon I started spotting/bleeding. Needless to say, I'm freaking out. Tomorrow morning I'll call my gynecologist's office, but until then I need to be talked off the ledge. I'm surfing the net looking for all the reasons why I could be bleeding, other than the scariest one.

BB

runor

BBwithBC, I sure wish I could talk you off the ledge but it would be dishonest of me to say that you shouldn't worry. Because if it was me I would also be freaking out and thinking the worst. I think the worst 24/7 since this stupid breast cancer shit bombed my life. Nothing is just a 'thing' anymore, now it's all The Big C come back to kill me. I know I'm not helping. I cannot talk you off the ledge. So if you would just scooch over a bit I will join you on the ledge and hold your hand and understand your worry and know exactly how you feel. There we both are, me with you on the ledge, feet dangling down. I'm muttering that it might just be dry tissues, or maybe one of those little blood vessel things that grow now and then, polyps, and maybe it burst. Maybe you sneezed too hard and ruptured something. Maybe it's nothing. Maybe it's not. We don't know. We just have to find out and it will be HELL until this is all sorted out. I am with you on the ledge. I have a little bottle of something stiff in my coat pocket. Here, take a swig, you need it.

vampeyes

BBwithBC - I am wondering if the blood could just be from one of your cysts? I bleed and so far the only thing they found was a cyst and at my last checkup it was gone. I will have to ask my doctor if this could be the reason for it. I have also read of a lot of women bleeding while on tamoxifen and it being nothing. It's good your getting it checked out, let us know how it goes. xxx

Rah2464

Runor God I love your sense of our new reality! I am joining you ladies on the ledge this morning as yesterday I finally capitulated and called my MO's office for an appointment because I have this deep pain in my left hip that has gone on for a while. And now we wait. For the appointment . For the consult. For any testing that is ordered. Drives a lady to drink. Oh wait my MO doesn't want me to do that either. Figures.

Lomlin

https://www.breastcancer.org/risk/factors/plastic

So after reading this, I went through all my plastic and was astonished at how many bad plastics I had. I use a plastic water every day, and have my cocktails in plastic cups. So I dumped a lot of plastic last night!! Did not know that plastic has the hormone estrogen: 'Study: Most Plastics Leach Hormone-Like Chemicals. Makers of water bottles, including Camelback, now sell products that don't contain BPA, a chemical that can mimic the sex hormone estrogen. But a new study says that even if they don't contain BPA, most plastic products release estrogenic chemicals.Mar 2, 2011'

VL22

LomLin - it is very frustrating. We’ve actually switched to drinking our water out of plastic, because our tap water has been being scrutinized for a few years. We have a water filtration system, but it doesn’t seem that is good enough. Neither is boiling!

I’ve been doing research and within yelling distance of my home, 5 of us have cancer - 4 women, 1 man - 3 are breast. None diagnosed were over 50. I was researching deaths but it got too depressing.

My point is WTF? Can’t drink tap, can’t drink bottled.

Lomlin

Geez just when I though the boob pain and everything associated with it seems to be going away, I get hit with a round of severe pain. Course I doubt me shoveling snow on Monday and Thursday didn't help. I like to be active but hate to exercise so I shovel (winter) or mow the lawn (summer) , mowing doesn't bother me but this shoveling did a bit. 'sigh'

BBwithBC45

Runor, Vampeyes, Rah2464 - Ladies, you are awesome. Thank you so much for keeping me company on the ledge. I'm not much of a drinker, but what the heck, I'll take a swig.

I took a Xanax last night before bed and slept like a baby. Today I'm not bleeding so far, so it is easier to hope that it's just a little blood vessel or dry tissue, etc. I don't think it's a cysts, because my ovaries were removed and I hope I don't have any other cysts.

I was already scheduled to see my gynecologist this coming Monday for my yearly visit. When they found out about the bleeding they had me schedule the ultrasound first and then the doctor will see me and go over the results. I'll try not to be too nervous over the weekend.

2018 was the year when I finally stopped thinking of my cancer every day. I felt like I moved on. I even managed to pry myself from this forum; the first few years I was here constantly. This bleeding brought me down to earth very quickly.

Runor - I'm sure plenty of people already said it to you, but I just enjoy your writing and your sense of humor a lot.

Rah2464 - I hope you don't have to wait a long time, that they can check your hip soon and it turns out to be nothing to be worried about.

My MO never seems very concerned with my aches and pains. My primary doctor is more sensitive to that. A few months ago I mentioned to her how my lower back on one side was hurting, even radiating to the front and waking me up at night. She sent me for an X-ray. The diagnosis.... constipation. I felt a little embarrassed. I still don't believe that this was the cause for the pain. However, eventually I did stop hurting there, but now I'm hurting in two other places, for a couple of months now. I'm tired of even bringing it up with the doctors.

vampeyes

BB - I so understand how you feel about bringing up aches and pains. As soon as you mention it you are sent for a ton of tests, then the worrying starts even as you try to convince yourself there is nothing seriously wrong. I had horrible spine and neck pain, sent for MRI and bone scan, still waiting for the MRI results. I was put on gabapentin for the pain thinking it's likely a pinched nerve, started doing exercises every morning for that pain, took two weeks off work and I feel better. This makes me believe, along with not hearing about the MRI yet that all is good, just poor posture, arthritis and overuse.

lala1

BBwith BC--Do you still have your cervix? I was told when I had my total hysterctomy that if I only removed ovaries I'd still have a period sometimes but wouldn't if I removed it all. Since I had thickened lining on Tamoxifen along with my ovarian cysts I elected to remove it all. Feel so much better.

PrincessButtercup

I don't understand how a tamoxifen lotion or gel could work, since the purpose of tamoxifen is to prevent a distant (not local) recurrence.

Lomlin

You would be right PrincessButtercup. I asked my oncologist about this cream/gel and she said that the tamoxifen is to prevent a distant recurrence and other cancers as well.

MLAnne

I haven't even been on Tamoxifen for a month yet and so far the only side effect is trouble falling asleep and staying asleep.

As an aside, I got a letter from my insurance company saying they cap Tamoxifen coverage at 10 years. How long do most people take it?

runor

If I am not mistaken (and often I am!) I read a study where tamoxifen lotion, at a lower dose, was used to prevent breast cancer in women who were at a HIGH RISK of getting it. In other words, none of these women had breast cancer and topical tamox was being used to prevent it from ever happening.

I have read a few studies on low dose tamox and got all excited because I think my crazy half dose idea is justified, and then I read AGAIN and see that it was used to prevent breast cancer in high risk women and NOT to prevent recurrence in already diagnosed and treated women and I get a little bummed out. Can success in preventing it in the first place correspond to preventing a recurrence? This I do not know.

BBwithBC45

Vampeyes, don't you hate it how they make you wait and wait for test results? Here is hoping you'll get them very soon and they're good.

Lala1 - yes, I still have my cervix. Only got rid of ovaries and tubes. We'll see what I find tomorrow from my ultrasound and the doctor.

vampeyes

Good luck tomorrow BB. xxx

Annie-B-7-14

hi!

What are the pros and cons of keeping the cervix- getting hysterectomy in February and I feel under-informed...

Thanks

Nancy618

MLAnne... I have had sleep issues for yeara so it's a bit hard to judge, but I think I'm sleeping better on tamoxifen than I did on any of the AIs. Not better than when I've been off all/any of the meds though. I'm now using either tibetan singing bowls or quiet soothing music before bed. Seems to help.

Another good thing about tamoxifen... I've lost 6 pounds in 7 weeks. I no longer am hungry constantly, don't snack, and eat smaller portions at meals.

However, the brain fog and memory issues bother me. Listening to Christmas carols just now, I had to really work at remembering the names of the songs... Ones I've heard a million times. I have to write everything down. My phone calendar is full of reminders. I forgot to do the laundry today. I have to dig out some old underwear for tomorrow because I'm out!

---

runor

I seriously think we need this on a T-shirt: I STILL HAVE MY CERVIX!

BBwithBC45

Ha, ha, Runor - that T-shirt would create quite a stir.

Got my ultrasound, not much changed since last summer. Lining got just 2 millimeters thicker, which is not much. The doctor did the biopsy - this is the first time I've ever had it done. Ouch! I've heard it would hurt, but I was not prepared for that pain. Now I have to wait for about a week for the results. Here we go again. Waiting...

I'm not loving this gynecologist. My previous one retired which caused me a lot of anxiety (how dare he!? ). This new one didn't even examine me other than the pap and the biopsy! This was my yearly visit and I feel like I'm not taken care of properly. Not that I like this kind of exam, but I feel very uneasy by this lack of attention to detail.