Bottle 'o Tamoxifen

gardengypsy

Facial hair? I had not heard that one..This disease is a nightmare.

Egads007

Gardengypsy - I think it was just the initial regrowth and menopause, not necessarily from tamoxifen...if anything it thins hair. So yeah, nightmare lol

Jadalulu

Lala1, I pre-ordered Dr. Kristi Funk's book, Breasts the owners manual. Just released yesterday and I read a few chapters last night. So far a pretty good read, I would highly suggest everyone pick up a copy!

Jadalulu

Hapb yes prevention by diet, and other factors. There are basically three parts to the book, prevention, treatment options, and life after BC. I’m not very far along in the book yet but I like it so far

runor

I get a little ticked off with books that promote the idea that we can prevent breast cancer. With the idea that we can prevent it is the ever so subtle suggestion that people who get breast cancer caused it - by not preventing it. Oh the authors may go to great lengths to say they don't blame anyone for getting their breast cancer, it is an unfortunate event. But then they go on to say that if you stay skinny, have at least 13 babies, drive a GMC and mow the lawn wearing safety boots and blah, blah, blah, you can ensure you will be less likely to get breast cancer. I call bullshit.

When I use those calculator things about my breast cancer risk factor I am less than 8%. But I got cancer anyway. And I got some weird, whacked out rare version of breast cancer. Now someone is going to tell me to eat kale, suck lemons, rub on more SPF, drink more coffee and wine and sleep better? Oh come on! If ANY of this stuff worked there would be no breast cancer! These books don't help a damn person avoid cancer but they do fuel that fear that many women have (rightly so!) and we open our wallets and shell out dollars for a book that suggests 8 Simple Steps to Save Your Life and Breasts. Again, I call bullshit.

We do not know what triggers cells to go postal and start dividing madly. Since we don't really know what triggers it, we sure as hell don't know how to prevent it. But that doesn't stop opportunistic parasites from preying on the desperate fears of millions of women and cashing in on the cancer cruise. I swear, if one more person tells me to do X or eat X or smoke X and 'it will cure your cancer', my head is going to spin around in circles, exorcist style.

There is a big difference between not taking stupid chances (do not swim in nuclear waste ponds) and preventing breast cancer. Eating pesticides is stupid, don't do it. But beyond that I truly think anyone claiming to have the inside information on how to never get breast cancer is a liar and fraud.

vampeyes

Thanks Egads, I will try another visit with the scale today or tomorrow. Hopefully you are correct and it was just bloating.

Ladies I do believe that eating healthy and exercise is a good thing for us, but I also believe that environment plays a big role in cancer. For me we live close to what we call "Chemical Valley", they say we have a very high cancer rate here and just South of us as well. Think of all the chemicals we inhale daily, especially now with all the farmers spraying fields for crops. All these sprays - for weeds on our yards, for bug, how good are those oil warmers for us to be breathing in, air fresheners etc.

Egads007

Vampeyes, I used to be a devoted user of all the 'smelly products', home and car. The one I loved the most was the Fabreeze clip on for the air vents......gaaawwd, how dumb is that, blasting chemicals directly into my lungs?!? I rarely use a room diffuser with essential oils now, usually at Christmas, but must confess that I end up switching it off early because of what you just said. My father died of lung cancer from asbestos (only worked for the place one year, 30 years previously, it still reached out and killed him) so yeah,environmental chemicals are a big concern. I lived north of Toronto for just over a decade in a small town smack dab in the middle of sod and potato crops that were constantly sprayed, the area had high cancer rates. I've often wondered if it had anything to do with my diagnosis. Not sure, but it probably didn't do anything positive for my health.

Jadalulu

runor I’m sorry you feel that way but I think that any form of education on healthy lifestyles can be useful. The author doesn’t boast that cancer will always be prevented by diet, exercise, etc. only suggests that you can lower your risk factors.

VL22

I think it’s our own bodies reaction to pollutants that causes cancer. Maybe it is plastics and bug sprays and weed killers, but some of us are more susceptible.

I have been a healthy eater my entire life. I’m slim, I work out, but I got this crap. My chances were less than 1%. A friend of mine tried to use it as an excuse to not do those things, but I don’t think that’s the message! I’m still living healthy to prevent a recurrence- I do think it matters.

Egads007

HapB - your story reminded me of the pics or vid from the 40s & 50s showing DDT being sprayed from trucks and kids running through it. My mum tells stories about doing it. How many polio cases resulted from this practice?!? How many cancers did it cause? See pic below. Thankfully we know better now!

VL22 - agree, healthy living can't hurt in any way. I practice it myself and keep my fingers crossed that my number doesn't come back up again.

lala1

jadalulu---I think the author of that book is the same one who did the segment on Megan Kelly Today. I'll be curious to see if she gives recurrence prevention percentages in it.

Jadalulu

Lala1---Yes, this is the same author and surgeon that was on Megan Kelly! I will let you know if I see any info on recurrence rates.

vampeyes

If you are on Tamoxifen please find out if you should take an aspirin a day to prevent blood clots. Went to Emerge on the recommendation of other ladies on the forum and had a chest x-ray and d dimer (sp) blood test done, said no clot. Followed up with GP who felt I had a heart problem. Wasn't feeling great today, like symptoms were getting worse so I called the triage nurse where I had Rads. She advised me to call my oncologist and go to emere. So I did. Well I am still waiting for the oncologist to call back! At emerge they did, EKG, blood work, CT and I wore a heart monitor. Bad news came back. I have a clot in my lungs, started shots for thinning my blood 3-6 months of shots every day. Also found spots on my spine, high probability of bone Mets. Soooo if it hadn't been for the clot they wouldn't have found the spots, but if I hadn't persevered I would have died from the clot. So check into it. If you have chest pain, difficulty breathing, shortness of breath, easily winded, get up to emerge where they can do a CT scan as ther blood test proves nothing.

This all happened since Sunday. Chest pain started April 23, not even 2 full months on Tamoxifen.

Artista964

sorry to hear vampeyes. Yea we need to monitor ourselves and go to er if something like breathing, chest, heart, pain, etc feels off. Best not to wait and see.

Im on 80 mg aspirin a day because of the clot possibility and I kept my port for labs and should it come back. Of course you need to run it by your primary doc or whoever knows you best before taking aspirin.

Egads007

Omg Vamp, I’m so sorry this has happened! I’m also very glad you got the answers and are being treated. Thank god you persevered! I’m so upset for you. When you get the rest you obviously need let us know how they are proceeding with the spots on your spine please. Are you feeling any better with the shotsthey gave you? I’m going to remain hopeful and postive that you’re going to get clear results! Big gentle hugs!

runor

Vampeyes that is horrible news! I hope the clots clear up, although it sounds like a tough slog. I also hope the spots on your spine are nothing. Too much bad news! I am so sorry.

vampeyes

Thank you ladies, I don't know what I would do without this forum. The ER doctor has put in a rush request for a bone scan to be done asap. I asked him if it could be anything else and he said that with my history and age the radiologist and him felt it was a high probability it's cancer. I wasn't this scared when it was BC.

So now....do I need to bother with the awful Tamoxifen anymore? Thankfully I see my oncologist on Wednesday.

Cpeachymom

vampeyes- that Sucks! I'm so sorry. Nothing like going to the ER once and being told it's not blood clots and then going back and “Oh, sorry, it IS a blood clot" !! Stupid people. Then the double whammy. ☹️ I hope it turns out to be nothing- heck, they've been wrong once before! (Hugs))

shelabela

vampeyes, so sorry to hear. Praying its nothing. Sending huge hugs.

Scrafgal

vampeyes

Sorry to hear of your recent issues. Just prayed for you to have a good outcome.

Egads007

Vamp - I’m no doc but I would think you should be taken off of tamox for the short term, all things considered...did the ER doc make no mention of this? Can you call any of them or even your PCP to check on discontinuing them until you’re sorted out? I’m not in favour of ever recommending what a person should do with their meds as it’s dangerous for anyone but a doc doing this...it just seems to make great sense to me. Might be worth checking into sooner than later. Hope you’re feeling better today! Hugs

Beaverntx

Vampeyes,

Wow, so sorry to learn of your very serious SE from Tamoxifen. A good lesson to all of us to pay attention to our bodies and be persistent in getting answers.

Praying for a quickly scheduled bone scan and fingers crossed for better news for you. Hang in there--we're on your side.

vampeyes

Hi all, I sm breathing a bit better today - yay. I see ther oncologist on Wednesday and tamoxifen is definitely one of my questions for him. I will also be calling the Rads triage nurse Monday morning to inform them of what happened last night.

Thank you all for your thoughts and prayers.

{HUGS to all}

Have a wonderful weekend.

ThreeC

Vampeyes- So sorry to hear what you have been through. It is encouraging that you are breathing better today. We all are fortunate to have this site. My GP did put me on Ecotrine but a slightly higher dose. Tamoxofin scares me- both if we take it & then if we don't. Sending you a hug and a prayer. My "active imagination" has little men in white coats running down halls chasing down a a bone scan tech & machine! (Possibly a memory of a Doc from the TV show SCRUBS) I'm also sending you a virtual huggy pillow-just hug your pillow when you are scared! We're thinking of you.Keep us posted!

Lilacllama

I have been on Tamoxifen and Venlafaxine HCL for 5 years. I am done with Tamoxifen now (5 year survivor) and trying to wean off the Ven now. It has been awful! My OBGN put me on it to counteract the hot flashes. I had a lumpectomy and radiation. She put me on a lower dose ( to wean me off) then told me after a couple of weeks I should be able to stop. I have been completely off for a week now but am finding it very hard to function, which is hard while working full time. Very lightheaded and woozy. I actually found this site while trying to find help with the withdrawals. I see my onc in a couple of weeks so am planning on asking him if I am experiencing tamoxifen withdrawals also? My advice would be to stay away from the Effexor, I wish I had. Hope you find something that works for you! Can update after I talk to my onc. Very happy however to say I am now a survivor. What a journey it has been. Prayers for you!

Artista964

effexor is the worst. I felt like crap for a month after the very slow weaning even though i was put on celexa.

Egads007

HapB - excellent article, thank you for posting. Why the heck you got blasted for posting is beyond me, the more info we can get as med consumers the better. Before taking any med or supplement now I want to know the good, the bad and the ugly.

I took Paxil years ago, during a particularly low point in my life. It was very short term, 3 months. My PCP told me it wasn't addictive and safe. I blindly took it. Boy did it work! I felt great and got things done like never before. Out of boredom I started researching it and read the type of things that were posted in your article. I didn't like what I read, decided to discontinue and weaned off them. I experienced the mood slump, fatigue, headaches and most scary the 'brain snaps'....very frightening. I could see that while it wasn't physically addictive, it was certainly emotionally addictive for me as I kept wanting to go back on them again. It took months to feel right again. (And I was only on them for 3 months!

I do feel there is a place for antidepressants, for millions it gives relief from severe issues and conditions. It can give people their lives back. So I feel that anyone considering taking antidepressants should first take pause and arm themselves with the good/bad/ugly to weigh the options and risks intelligently. For me, I'd try therapy first and lifestyle changes before ever taking them again. My problems weren't physical, nor a mental health issue and were fixable when I took them, so I wish I had read up first. I hope I never again get to a point of having to consider taking antidepressants, it wasn't worth the fallout in my experience.

ThreeC

HapB- Excellent article. I have heard from several women on other threads of experiences where weaning off antidepressants was one of the hardest things they have experienced. I think it's just like ANY other substance we put in our bodies. We are each unique, what effects one of us doesn't effect another of us in the same way. We are chemically different.

Egads- I firmly believe in "thinking for oneself" with the most factual data you can acquire. People who simply accept medicine and don't educate themselves can live to regret it. You were so right to research any medication, to know what SE's could occur. I am currently looking for a new Endocrinologist. I don't have a thyroid due to Thyroid cancer. The monitoring process for recurrence involves lab tests. Every time my current Endo runs those tests she runs the wrong test- she runs the ones that state from the Labs used they are only to be used with persons with an intact Thyroid. That when used for persons who have undergone a Thyroidectomy can produce false results. The lab went so far as to give the correct test numbers to be used in my case. The Endo refused to even read the comments on the lab results her nurse had given me. So, my GP is helping me find a new Endo.

Whatever our medications, conditions, health issues, we owe it to ourselves to learn as much as we can. The quality of our lives is important

ThreeC

HapB- For those with enquiring minds. Look up what "may be" the newest system in the human body. The Interstitium system may be a very interesting find, so to speak, for those of us with cancer.

ThreeC

HapB- We are now a coffee club of two. Three C is just that. My husband teases me. He claims I'm the only person he's ever heard ofwho went to the dentist in the morning only to return home from the podiatrist. I just try to find something every day to make me laugh 😂 and smile so I can stay away from Crazy 😜 Town.