Bottle o Tamoxifen
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DLRF sorry you have such a strong family history - my fam is riddled with cancer as well, all types. Really glad you are thinking proactively.
For me, Tamox is a very difficult little white pill. I have a complex relationship with it. I would be very interested in what your MO has to say about dosing levels. Can you get the preventative effect with a very low dose so as to avoid a lot of the side effects (some lucky souls don't have these)? 20 mg is a beast for a lot of us. Heck for some 10 mg is rough it is so individual. You may want to discuss genetic testing to see how well you would metabolize T as a lot of medications utilize the same pathway. I am an intermediate metabolizer so I have to really watch any additional medications. I would also want to know how long would the plan be for this protocol. 5 years? 10? until you hit menopause?
The other thing I would be curious about is what is your monitoring plan. Would your MO consider having a baseline MRI to check your breasts thoroughly. Not sure if you have dense tissue or not, but mammos and ultrasounds are not 100% diagnostic. And would increased monitoring perhaps even offset the need for tamoxifen? Or perhaps reduce the dosing to a tolerable level?
I wish you the best at this meeting with your MO, and I hope you find a strategy that works for you.
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DLRF, If you are on birth control pills ask how long you need to be off them before starting Tamoxifen. I agree with Rah2464 ask if you need to take 20mg.
- About 6–10% of the population has a genetic variation of CYP2D6 that doesn't work quite right. If you're one of them, tamoxifen likely won't work well (or at all) for you. Other medications may prove more beneficial.
- If you have a clotting disorder treated with anticoagulant medications, or have had a previous episode of pulmonary embolism or deep venous thrombosis, tamoxifen is contraindicated.
- If you have a personal or family history of uterine or endometrial cancer, your risk of developing one of those cancers would be even greater if you use tamoxifen while other medications do not have similar effects.
- In premenopausal women who are pregnant or breastfeeding, tamoxifen should not be used.
There is a lot of useful information on this site. Good luck to you.0 -
Thanks Rah2464 and flashlight
Apologies for leaving out some of the details -
Family history of breast cancer includes 2 great grandmothers diagnosed in their 50 assume pre-menapausal - 2 grandmothers both diagnosed in their 40s - one had a second primary site later. My two paternal aunts, one was early 50s and pre-menapausal and the other was post in her 70s. Family history also includes some melanoma (dad, grandfather), colon (one of the grandmothers) and esophogeal. Lordy - its a lot.
The BS is definitely upping my monitoring quite a bit. I will be getting an annual mammogram (which I have been for the last 5 years or so), an annual MRI, and a bi-annual breast exam with her. Re: density, I am "super" dense and fibrocystic. In fact the BS made sure I was clear that she does exams all day long and I am on the top end of the spectrum.
I also failed to mention I had a hyperplasia years ago removed. It was not atypia.
The BS said the tamoxifen would reduce my numbers by half if I stayed on the full course. I guess I'm wondering if this is the right path...if I will still be 20+ percent. I know there are more radical options which are also not perfect solutions....
Anyway, thanks again for the advice...
DLRF
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DLRF, If you have been treated for hyperplasia ask your GYN if this is considered a diagnosis for you. If so, you can't take Tamoxifen. Tamoxifen causes your lining to thicken. It sounds like you and your doctors are on top of things. I understand about the radical options and I think you can question it and get a thread of others making this decision on this site. Wishing you the best with this difficult decision.
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runor, re the "pee thing" you are absolutely correct! I've given up and wear a pad every day, got tired of having to change clothes. Some days don't need the pad, others have to change it once or twice. I can deal with this, so far. My bad days are when the fatigue and brain fog hit together and I am so lethargic that practically nothing gets done and I don't even care (until the not getting done catches up with me)! Those are the days I seriously consider quitting but have not done so yet. Will be having a discussion with my prescriber this month when I see her.
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Hi Everyone, I still have not started Tamoxifen. Its been a year since I've finished Herceptin/Chemo. My Hot Flashes are so horrific so violent they are controlling my life.. I had a hysterectomy over 30 years ago. Took Estrace pills until DX stopped Estrace immediately- that's when Hot Flashes began.
iynae23 - I would like to hear how ESTROVEN works for you. From what I have read (mayo Clinic) that Estroven contains Black Cohosh which interfere with action of Tamoxifen. I guess I'm being a little selfish, since I'm not on Tamoxifen, I am wondering if it helps your hot flashes. I have been given : Paxil/Effexor/Gabapentin, Oxybutinin & Clonidine - which none worked.
I've been approved with my Health Ins for SGB injections (stellate ganglion block) (Google MayoClinic) its to reduce hot flashes - the only DR that is qualified in my area is too far away. My OBGYN suggested BELLADONNA but it sounds pretty scary. (via Amazon.com)
I think I will go to the Health food shop and just buy the Black Cohosh.
Everyone's advice would be appreciated!
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DLRF I saw that you mentioned genetic testing, I have found a lot stop at the 2 main Gene's. I have a family history as well and was just waiting for that shoe to drop. When I was diagnosed I had the 9 high risk Gene's tested and 38 mid risk Gene's tested because that would impact my surgical decision. Ironically I'm more apt to get colon cancer versus breast cancer. Hope your appointment goes well.
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Looking for some insights on Tamoxifen driven hair loss. The website suggests that it slows down markedly after 1 year on tamoxifen. I wondered if people had found this to be true? I am getting a bit tired of the vacuuming and it is a bit unnerving.
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Can't say I noticed a slowdown until several months after starting to take Biotin. It does seem to be a bit better now.
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riles I think you should try Black Cohosh or Estoven. It works for some for awhile. I tried it for a time as well. Please return and let us know how the injections work. That is new info to me. Perhaps you could start on a small dose like some of these ladies. If not I understand until those hot flashes ease up. Have been on Tami for 7 years now and I do not like the hot flashes. None of those drugs you took worked for me either. Good luck.
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Here is an interesting tidbit from Canada. Apparently there is a tam shortage in Canada and our gov't had asked for and will be receiving a bulk supply from the US to see us through. Guess I best count those tabs that I have left.0
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Molliefish, this does seem to be correct. There had been mention of this on other threads. Can't remember which. Instead of my usual 3 month allotment, I was given one. Hmmm.
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You can have mine--I'm not taking it
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Hi all, just saw my oncologist yesterday, I was mentioning that I felt really fatigued, just like all of a sudden since the weekend. She had me do a cbc count and my hemoglobin is down, it's 11.9, should be 12-16 for women. She wants to do another blood test for B12, folate and iron. Plus she recommends a colonoscopy. Why the colonscopy? I don't get that. Anyway anyone experiencing anemia from taking the Tamoxifen. I have been on it since August 2018 and take 20mg. I still have my hair falling out since February of this year. Getting pretty annoying cleanin up hair all over the place.
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Hey LomLin, the colonoscopy will rule out any microscopic bleeding from your colon.
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Wouldn't I notice if I was having any problems with the colon now?
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LomLin - I had my 6 month follow up with MO on Tuesday...he didn't take blood at all. When I questioned him on it, not taking blood like he did regularly when I was on Arimedix he said "no need to with T"
Now I need to get my primary back on schedule to take blood as she stopped because MO was taking blood 2-3 times a year! It's a merry go round. TT
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News report on the Canadian tamoxifen shortage.
https://apple.news/ASCIT40AhTc2cKF6OJkj_ww
Needless to say, I got on securing my next prescription refill the next day
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LomLin, not necessarily. Microscopic means it's nearly impossible to see.
True story, a few years ago when I traveled about 95% of the time for work (all by plane), I took one aspirin a day as a preventative measure for deep vein thrombosis. After a couple of years of that, my blood work showed a drop in red blood cells. I've always run slightly anemic but this time I was well into anemic territory.
So my PCP told me to stop taking the aspirin for a month and then get retested. He said if it didn't drop, he would order other tests (including a colonoscopy) to see what was going on. But good news for me, stopping the aspirin did the trick and I returned to my normal, slightly anemic levels.
That's when he told me that in some people (waves hand), aspirin can cause that microscopic bleeding in the gut. Needless to say, I don't take aspirin any more.
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Thanks edj3, you have been very helpful. I don't mind the test or even the prep (sort of), it's how long I need to endure going without food, I can't last 12 hours without food and start to feel dizzy and disoriented. Glad that stopping aspirin did the trick for you. I am hoping for me all I need is an iron supplement or more B. It's just so weird how this came on so suddenly. Last time and the first time I had a colonscopy was when my period was extremenly heavy and they recommended it, again, don't know why, but everything was fine. Thanks again. I really like coming to this forum everyone is so helpful.
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I did see this:
Low blood cell counts have happened with this medicine (tamoxifen tablets). If blood cell counts get very low, this can lead to bleeding problems, infections, or anemia. ... This medicine may raise the chance of getting cataracts or the need to have cataract surgery. Talk with the doctor.
Tamoxifen Tablets: Indications, Side Effects, Warnings - Drugs ...
https://www.drugs.com › cdi › tamoxifen-tablets0 -
I'm really glad your dr is on top of this for you.
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Re: tamoxifen shortages. I know not everyone is comfortable with my view, but I am pretty confident that I'll make it until 2020 with my current supply of tamox, because I take half a pill a day. I think if people are worried about running out, they could cut back to 1/2 a pill a day until there is more Tamoxifen available and then resume their 20mg tablet. I would rather stay on a drug I am familiar with than do a short shift over to another drug and then bounce back to tamoxifen again. My one month supply will last me almost twice that long. I do take a whole pill twice a week, I am pretty confident (perhaps wrongly) that there is sufficient tamoxifen in my system. Consider 1/2 tablets for the short term.
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runor,
If I couldn't secure a supply, that was my plan! I was just on a glorious break from tamoxifen for surgery, otherwise I may have looked at the shortage as divine intervention. 😆
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I only just read in the news about the international shortage, yesterday I went to get my Tamoxifen script and they said it would be at least a month before they will have any!
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I seriously wish I could get my unused stuff to one of you, legally.
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Is the shortage in the USA or just Canada?
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Good morning ladies!
I haven't been here for a while. It was nice to catch up on a couple week's worth of posts. And I have to say, I was nodding through most!
I'm back on tamoxifen for 2 weeks after a month off. I had horrible knee pain and thigh cramps, so the MO took me off until I saw him for my checkup. It took about 3 weeks, but I was back to myself! I still had knee issues which has since been determined to be either a Baker's cyst or arthritis. But my mood was GOOD! My hair loss stopped. I had energy. I WANTED to do things and go places.
After 2 weeks back on, I'm experiencing depression like I haven't had since being on AIs. I don't want to go anywhere or do anything, but I feel anxious. I do have a craft show in 2 weeks and I am so disorganized and unmotivated. The only good thing is the hair loss hasn't started yet.
The decision to go back on the tamoxifen was mine. MO was good with anything I chose. Oncotype 14. 11% chance of recurrence. In the end, I decided to take them. My reasoning was that if I did get cancer again, I would kick myself for not taking it. I'm going to hope that the symptoms get better... A month in Florida in February might help. But if I continue to be weepy with no energy, I think I'm going to opt for quality rather than quantity of life.
My heart goes out to all of you who are struggling. It just doesn't seem fair that we have to deal with breast cancer and then have another battle with the side effects of the drugs.
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LomLin the shortage is worldwide.
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Thanks WorryThe Pooh, it is because they aren't making it fast enough?
Maybe taking 1/2 pill will make my supply last longer too, runor.
Nancy618 - I feel you on the Tamoxifen, if I were to stop and got the cancer back I, too, would kick myself for stopping it. My hair has been falling out since February of this year. I have been on Tamoxifen since August 2018. Once in a while I miss a dose and even missing a dose I feel better, probably more mental than anything. I, too, don't feel like doing anything, mainly because I see people in a different perspective now and don't want to deal with their pettyness.
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