Bottle o Tamoxifen
Comments
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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.
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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.
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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.
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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.
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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
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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.
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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
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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.
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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'
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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.
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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'
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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.0 -
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.
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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.
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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.
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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.
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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?
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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.
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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.
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Good luck tomorrow BB. xxx
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hi!
What are the pros and cons of keeping the cervix- getting hysterectomy in February and I feel under-informed...
Thanks
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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!
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I seriously think we need this on a T-shirt: I STILL HAVE MY CERVIX!
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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. 0 -
BBwithBC45--You mean at your annual exam he didn't do a breast exam?! For someone that's had BC?! I seriously think you need a new gyn! Mine does a thorough exam every year and then has me come in his office afterwards and just have a conversation where I can discuss any concerns or if I don't have any, we just chat. I truly love him! I think if you don't LOVE your doctor, you should get another. There are plenty out there and since we all have to now go to so many appointments, we should at least like and trust our doctors. I get a breast exam every year from my BS, GYN and MO so I have them spread out throughout the year so that if you combine those 3 with my mammogram (and every other year MRI) someone is doing a hands on exam about every 3 months. That gives me great peace of mind.
Annie-B-7-14---I'm not sure I could tell you the pros and cons of keeping the cervix in a medical way. I just know that my doctor said that with my thickened lining, ovarian cysts and enlarged uterus, he was very comfortable with taking everything to greatly reduce my cancer risks. I think that for a very small group there is the risk of prolapse maybe? This goes back to liking and trusting your doctor. Mine met with me repeatedly and answered every question I had so when it came time to decide, I was totally on board with his decision. And in hindsight, total removal was one of my better decisions. I feel great!
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BBwithBC, I second the suggestion you seek out another gyn doctor, especially if you can locate one with whom you feel more at ease! Two majors errors in his "care" for you, IMHO: a totally incomplete examination with inadequate communication and a painful biopsy. I had an in office endometrial biopsy and was dreading the potential pain--my gyn used local anesthesia so there was no pain, including when she removed the polyps that were there, so it is possible but it does take more time.
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Oddly, aside from my very gentle and professional lady radiation oncologist, no doctor has handled my boobs since this whole thing began other than to look at the stupid cyst when it came bulging up. And I'm fine with that. I have become less and less tolerant of other people's hands on my body as the years have gone by. A pap test? Good GOD I'd rather have a root canal without freezing!
My boobs have always been lumpy like two bags of coal. I do not see how some doctor, who is completely unfamiliar with my boobs, is going to notice something that I myself have not noticed. Do they take a 6 week course in medical school called Boob Mushing? I don't think so. I think it is a false sense of security to think that a manual exam by a doc is somehow going to keep us in the clear. It is not. WE know our bodies / breasts better than anyone. And it's one thing to find the lump yourself then point it out to doc and have him second the opinion that it feels like a lump, but I place ZERO confidence in the physical breast exam of any doctor. To me it has zero diagnostic value.
In my own case PAIN alerted me to a problem. I felt around for months trying to find the root source of this endless, 24/7 ache in my breast. There was no lump, no thickening, no nothing. Just pain. It was a mammogram that found the problem because no amount of manual feeling could have spotted the weird situation I had going on. It left no physical clues. A doctor would have felt that boob and declared me fine, it's probably just menopause, typical hormonal boob ache, and sent me on my way.
I do appreciate the surgeon checking things out to see if the scar tissue is behaving as expected. The radiation oncologist was also feeling around looking for specific events. But these were different (in my mind) from just a general feeling around to see if anything stands out. So ladies (and few gentlemen) we must be our own line of defense and use the doc as the second in command. I read somewhere that the vast majority of breast lumps are found by women, not doctors. So when my doc does not examine my breasts, I do not hold it against him at all. The fewer times I have to take my bra off in a day, the better things go!
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I found that the most thorough (painful, but the best) breast exam I've ever had was done by the surgical nurse who the follow-up after my surgery. Fortunately I get to stay with this team now.
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My lump was found during a manual exam by a new gynecologist. I would not have found it on my own and I could barely feel it even after she showed me where it was. I'm very grateful for her.
So at least in some cases, a manual exam can be a great diagnostic tool.
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Annie-B-7-14, I just had a total hysterectomy 3 weeks ago and must say I am glad I did. I am only 42, but knew I was done having kids and was tired of worrying about the Tamoxifen causing ovarian cancer, tired of worrying if I would have a period and when because it was so random from taking chemo and being on Tamoxifen. I also had to think about a form of birth control that did not consist of hormones SO my doctors and I thought a complete hysterectomy would be the way to go. I meet with my oncologist in a couple of weeks to discuss & decide if I stay on the Tamoxifen or if I change to something else now that I am post menopausal. Have any of you ladies tried anything else? I am just curious how the side effects are. The Tamoxifen makes me achy, gives me brain fog and I have actually gained weight (not lost). Hugs to all of you ladies
We got this!!0
