Topic: Pros and Cons of Tamoxifen

Jan 19, 2018 06:02PM Sammy3 wrote:

Hi there -

I have been taking Tamoxifen for about 1.5 years now & honestly I don't have any problems. I think with any new drug, there is a period of time where our bodies get used to it, but then its just routine. I was not in menopause before chemo, but I am now (I am 46) and for me the worst SE was hot flashes. But I am pretty sure anyone going through menopause gets those anyway. I didnt read all the posts above mine, so I apologize if this was already asked/answered. But are you in menopause? If so you may be prescribed an AI and not tamoxifen anyway. Feel free to message me if you have any questions about tamoxifen.

Jan 19, 2018 09:03PM Faithonfire wrote:

sorry about that!

Chalk it up to chemo brain but I posted the wrong reply in the wrong room!

Talk about a pantyhose tucking in your skirt moment (blush)

Sorry Sammy

I am off tamoxafin now but went 12 rounds of it on chemo before surgery and my side effects were severe.

I'm looking for alternatives for that one drug for longer term use and will let you know what's my choice when I get to i

Jan 19, 2018 10:06PM jaymeb wrote:

Jan 20, 2018 06:58AM - edited Jan 20, 2018 07:05AM by pupmom

Jaymed, I was postmenopausal, age 61 at diagnosis. I started out on Aromasin, but was switched to Tamoxifen because of joint issues. However, I don't think those issues had anything to do with Aromasin. My femurs became necrotic and basically disintegrated. Nobody knew what had happened to me for a year and a half. I had spine fusion, as the doctors thought that was the source of my horrible leg pain. That didn't work, ugh. Several docs were scratching their heads about me, until my primary care doc thought to send me to a Rheumatologist. Well, that doc examined my hips and found, to his horror, that they were completely immobile. (Guess the walker and wheel chair I was completely dependent on didn't give anybody a clue!) Anyway, he ordered a simple hip x-ray and that showed what was going on. Two years and two hip replacements later and I am doing fine. That's probably more information than you wanted. I can be long winded too, hahaha!

Edit: Although docs don't know what cause my necrosis, DH and I suspect Zometa. I started having the severe leg pain after going through several Zometa treatments. Zometa is known to cause jaw necrosis, but there isn't a clear connection with hip necrosis. To me it was just too much of a coincidence. I mention this as a warning if that treatment is ever recommended for you. However, if it was the cause that SE would be incredibly rare, so not much to really worry about.

Jan 20, 2018 10:52AM Faithonfire wrote:

hi ladies,

I had a good morning finally after getting meds increased for pain and muscle relaxer so that will do fine until I get these horrific drain tubes out in 4 days YAY!! then I get to use my lydocane patches again! It's the nastiest gooey sticker that never felt better exactly where it hurts most! Can you tell how much I miss them yet?

Ok, I have an expander question for anyone who has or had them- before they are inflated again after initial insert why take out drains before filling again? I was told they would be doing both next week and it took a while to dawn on me this could be a bad idea but so is leaving open tubes on sides for weeks in my opinion! I just wondered if more volume added to expander would cause more whatever my body makes and needed to drain fill up in there too? I'm guessing it will dissipate in body as I heal anyway but just thinking through the logistics of these new additions, and trying to find a way to be comfortable once I am fully contained and what size that will wind up coming out to the moment I am done with reconstruction completely!

I protect my grafts like I did my babies it's funny I swatted my mom for dropping a book in my lap with my hand and she laughed and said sorry I forgot about the twins! I told her she won't be getting any more grandkids out of my tattered hide and she smiled and said I got you back and you will always be my baby no matter how many you have! Mom always did know how to melt me!

I have decided to make that my giant celebration after I heal up and finally let a big party be thrown for some shameless promotion and fundraising to take place in the town that made it all possible for our family! I am long overdue for lots of meeting people and all that so I have just given my nod to let the planning begin as I get ready to do what I do best and know that I always had it in me! Not anymore now that I am cancer free! My doc called before she left to share the great news!

I am jumping up and down waiting for my final reports presentation containing all my stats next week so I think they are girlfighting over who gets to tell me what first since I see them on same day usually we do this a lot lately so I keep my chin up as the rest of me gets poked into place! We all have a lot to celebrate with what we pulled off and I'm NOT letting anyone take that away by making me too upset to enjoy such hard earned victory!

My weight dropped a bit again with the stress Fallout but not as bad this time I'm only 10 under and keeping a food journal for my reconstruct doc because she's new to the team and wants to contribute so I'll oblige happily as we watch the results blow her brain up too then we all get to play 20 questions with what we see together now vs a non mutant! I'm eating a LOT even when I don't want to and it just won't stick when I am stressed this much. I did gain a total of 27 lbs on chemo with tamoxafin 12 rounds but haven't had it for over a month now and finally feel thinking clearing up so I am counting my blessings that it was only a side effect but a big enough one that I will refuse to take it EVER again! There must be something better and I will find it!

Until then I am on a clothing strike wrapped up in my silk robe and munching cookies in bed with a space heater thanking my lucky stars that I don't have to go anywhere today in all that snow

Jan 20, 2018 11:56PM jaymeb wrote:

Jan 21, 2018 02:47AM Faithonfire wrote:

hi and thanks jaymeb

I was wrong about not having to go anywhere today but glad I got out a little on a day trip to the frozen beach! I only spent a few moments outside and promptly froze my face off so had fun watching sunset from heated car instead!

My son started being mean in text early this morning which was his only way to let me know he missed me too. We always used to enjoy our mornings together so it hit me harder than usual since my husband the spineless won't return my calls or respond in any way since hanging up on me in the hospital! ANY bad vibe you can send such a heartless bastard have at it everyone and I hope he winds up arrested this weekend! How low can a man stoop to fail to honor his own word?!? To fail to even try is a strategy that will no longer profit him in any way!

And yes jay I did wake up to 4 drains and a giant ace bandage taped around my chest like a corset that nobody could touch except doc who left it on for a week did my unveil in her office and we were both impressed how well my skin held spacers the extra drains really helped the pressure evenly dissipate and was healing fine now with just glue straight across nipples instead of under so scars will be smaller after grafts are replaced on 2nd surgery with permanent implants..

Lot of that will be weight based filling in later before we are ready to decide on what size I will wind up and if they can convince me to do radiation at all based on my final reports coming this week!

I know I am fighting so hard is I'm not sure lifetime proven benefit is worth the risk to my implants or grafts will be. We got almost total response with chemo so I am pretty sure is time to stop putting my body through hell for not much proof it's worth it! I am not sure what other horemone therapy options I have yet but have been doing a lot of research.

I want my drains out SO much now I still can't sleep on my sides or shower yet but it beats being itchy and no getting grafts wet at all until reattach.

Not as bad as seatbelt leaves on a car accident or a actual c section so I can't complain as I feel it getting healthier and attaching well.

I am doing my best to make the most of my days no matter what but to not have any information supportnor even communication with someone just because you are too sick to stop them has become my living nightmare and even when I find the courage to call their school to ask for help and advice their father refuses to provide... as he promptly blew me off indicating he won't help us and that's all I can expect from our state public high school. I told you the blame wife for everything excuse is VERY popular among people like that!.

It will take nothing short of my nod to yank the rug out from under his feet so that is my only option now to call and report it. I honestly don't care what happens after that he won't get away with pretending I dont exsist anymore! That is a real reason to celebrate too!

Jan 23, 2018 05:23PM Moderators wrote:

((((((faith))))))

Jan 23, 2018 08:42PM jaymeb wrote:

Jan 29, 2018 04:36AM jaymeb wrote:

Jan 29, 2018 11:37AM Faithonfire wrote:

oh,

I forgot the official reports but my 3 sentynl lymph nodes showed total response in all ten sections and my largest armpit tumor went down from 5.5 cm to 8mm!! The total tumor margin was 8cm I think because the sack it was in stretched out to the diameter of a pin instead of a lemon and that’s how they measure it I guess. The whole organ structure from both sides are being studied for progression in pathology and it is best donation of unusable organs I could manage so what they learn from it will help find a cure one day.

They were floored that I was that clear from chemo alone that they are having a very hard time convincing me I need radiation at all. It’s too risky to my implants and grafts without any assurance that it will actually prevent future cancer of any kind with their current methods. The industry study being conducted now on this issue is what I would be basing my choice on so I don’t exactly need permission to be a part of that one by refusing to be fried just to prove it is harmful! The risks of harm we are expected to accept before agreeing to radiation is far greater for me than any data I have been shown about the benifit being proven to be worth the risk! I’m just too fed up and worn out to be poisoned any more as I am told it will all make me better! I think one method is enough either radiation alone like my mom had or chemo like I just did. Both seems excessive and expensive with more permanent damage than nessicary to patients based on decades old data of older treatments!

The hormone therapy recommendation will be much harder to negotiate but tamoxifen pills is the standard choice. I had very bad side effects on it during infusions and am looking for another choice without loosing my overies! They are disconnected but healthy and working fine so I am keeping them. I can’t have any more kids but I got to keep all my organs at least! My mom is on armidex and didn’t mind it.

I’m so excited my hair is coming back in well my eyebrows came back dark but my hair is white and no armpit hair at all and that’s the only thing that didn’t grow back but no complaints from me HA!!

Feb 1, 2018 08:53AM Faithonfire wrote:

hi jaymeb,

Thanks I’ve been having a real hard time regulating my sleep too due to all the meds and I look forward to not needing pain meds one day but I’m glad I went with plain morphine because it’s easier to step down and stop. The vallium I will probably keep along with the marinol to help me through recovery and get my weight back up. Onadstron was the first anti nausea we used and it didn’t do much to help compared to other options.

My onco and I meet next week so she can get her turn to weigh in on my final reports but I had a much better clinical response than anticipated so I would LOVE to hear her pitch for radiation only because I did not get a total response and that is the industry standard recommendation currently given as the actual industry study is underway to determine the validity of that old information at those doses!!

My mom chose radiation only because she had gone through chemo for colon cancer 5 years before and would rather die than endure that treatment again! She was also a stage 3 but only had a lumpectomy on her left with 8 lymph nodes removed. She said radiation was MUCH better than chemo so I’m still a little upset I didn’t have that option or I would have NEVER done chemo if I could have survived without it! One day I will solve the mystery of why we cancer patients are forced to go bald still when it’s a very fixable drug side effect but far less profitable for all the ways to extort it linked to the healthcare industry like cranial prosthesis outlets which is just a seriously overpriced wig shop!! I had more respect for myself wearing a cheap Halloween wig knowing how many careers thrive on the misery of a totally unnessicary and socially devistating side effect!

I don’t need anyone’s permission to stay ahead of the trends of abusing patients for profit so I passed on the formal study option of not knowing if I receive actual doses of radiation as I play along! I’m just NOT willing to incur that level of indisputable risk for lifetime advantages not proven as clearly! My mom and brother are mad that I won’t do it but it’s not their risk to live with so they respect that begrudgingly.

I hate to have to point to previous examples of this fight in my medical history but they all know I am right after the mesh implant fight to save my life with the birth of my son in 04. They told me I would die of the hernia if I refused the implant and that forced my choice to use only my own extra body material to repair the hernia and that became the industry standard choice for hernia repairs after enough deaths were directly linked to mesh implants in the following decade!

Somehow I told you so just didn’t seem appropriate so I will just continue to lead by example and let the rest catch up after they see my results!! I’m used to being called crazy, too bad it does not mean I am wrong!

I am coming to terms with the loss of my marriage by going to weekly therapy but even my PhD is at a loss to know what to say to me in my current situation so he wants to add another kind of therapy from a female also for surviving abusive relationships and abandonment recovery therapy. Don’t know how well I will do with that so still researching options.

The most valuable advice I have received so far on how to handle the drastic changes in my husbands personality and our total loss of communication was to mourn it as a death. The details of events that he did after kicking me out don’t matter enough to endure the pain of confronting any of it since it can’t be changed now anyway. The MAN I love and married is no longer his dominant personality left intact due to the permanent brain damage caused by his addiction. It shows up in mri scans as large holes in the brain and it rewires permanently as the brain slowly dies. I cannot extend the trust his former reputation earned him with me because he no longer honors his own word or vows and hides like a coward. It is so painful to endure only my faith sustains me through this. If he refuses to get the medical treatment and therapy help he needs to participate in completely to save our family then I cannot stay married to him. I have received blessings from many of my family’s churches that have kept me on their prayer lists under my maiden name since I arrived that will absolve me for having to take legal action to protect my family from the evil that has consoumed my husband and left him only a shell of a man with no honor. I was abandoned and betrayed for being sick and God has led my every step through this nightmare so I understand that I do not have to endure abuse from a man who broke his vows to me. What he has put me through just for loving him is unspeakable and I used to believe I could escape the shame it caused me by masking it as blind devotion to my spouse. I am lucky I survived to realize that in time to beat it! My ability to adapt is amazing and I’m just getting started!

I am the first one in my entire family history to get a divorce but everyone had made a point to reach out to me and assure me the shame of this is NOT mine to bear. I restored a rift in our family history that lasted almost a century with our cancer genetics project and they all wanted to show their gratitude by supporting my choice to not stay married to an addict. I am too important to them to reconnect with that I don’t need to worry about my safety or security by getting full control back of my own life. I will see to it my kids receive the same opportunity after they pass a drug test!

I know this is the right path forward to a healthy and secure future. I can’t have that married to a junkie who hurts me to extort my pain as much as he enjoys causing or bragging about it to other abusers as they trade techniques! They will all land in the only society designed to accommodate abusive men that violate laws...prison! It’s the only option for people who refuse therapy so it will be interesting to see him sober up and face the truth.

I will have a knockout body fully repaired on HIS dime as he promised in court but never did!! I will be so happy starting my new business without him that I will devote the rest of my time to repairing my relationship with my 3 kids and let him taste the silent treatment without the ability to change his choice to start that vile tactic after he lays eyes on me knowing he will never touch me again. Every time he watched me without me knowing is his own disgrace! I have nothing to hide and never understood his obsession until the addiction changed his personality that much so fast.

The loss of his original personality was the hardest thing to see along with the physical decline and it’s truly revolting! I don’t even care if he is cheating on me because he has absolutely nothing I want physically or emotionally at this point because he is so contaminated with failure it makes me recoil at the very THOUGHT of him touching me! Shame too because we always had such a fantastic sex life it was the greatest equalizer in our relationship and almost the death of me on one occasion too many. I was pregnant 4 times in 5 years until my last child almost killed me busting out so I had to get my tubes tied because he refused a vasectomy!

Feel free to let loose and be creative with hating him for all he has done to me, my family and friends try to keep it out of earshot also but it’s ok I am angry too just not in a vindictive way, it is more true grief at the death of the attributes I loved about him enough to endure this rapid decline as long as I have. I will always love the man he used to be but he can no longer be that man and hide his addiction and secret lifestyle so that’s no longer my daily problem. Let him reap as he sows and I will transform into the healthiest version of myself I have ever been!! The last thing I need is another relationship to replace his role in my future. If I ever find someone who loves me as much or as well as I love myself I would consider it but I have enough memories and imagination to last a lifetime

My kids will learn quick that they are no longer dealing with a dying crying pushover and will make it through the therapy process just fine with me. Can’t refuse until age 18 anyway so we will go on result based options of cognitive behavioral therapy instead of medications. They aren’t designed for minors and I don’t like the idea that pill popping solves social problems without training.

I hope he chooses to be a part of that too one day but won’t count on It unless it’s his only option to avoid jail! I’m sort of hoping the next call I get from him will be begging for bail money super bowl weekend!!

A little divine justice would do WONDERS to all current perspectives of integrity as I fail to respond and know he is finally as alone and uncomfortable as he deserves to be for what he has become. It’s liberating to know the pain someone used to get off on causing you will soon be their own without having to lift a finger. It’s not that I want him to feel pain himself as much as I want him to feel the level of pain he inflicted on me in my medical condition and what kind of monster that makes him. That will haunt him forever as well it should

Feb 18, 2018 07:20PM jaymeb wrote:

Aug 14, 2018 02:04AM crabbycamper wrote:

Has anyone tried Soltamox? I am having a horrendous time with tamoxifen. Basically, I've had every non-lethal side effect. MO prescribed Fareston, but I am so afraid to try it. Discovered Soltamox online today. Appreciate any input about Soltamox. Thanks!

Sep 4, 2018 01:40AM Veeder14 wrote:

Hi crabbycamper,

This is the beginning of my third month of Tamoxifen. Having side effects right away. I asked my doctor for a prescription for the name brand instead of generic thinking maybe the added compounds might be different if that is what is causing some side effects. After consulting two pharmacies I found out that name brand Tamoxifen doesn't exist.

I looked up Soltamox and it says it contains the active ingredient in Tamoxifen so it almost sounds like the same medication. At least the same active medication, possibly different compounds that are added to pills.