Any Early 40's Declining Tamoxifen?

AMLMom

Hi Andraxo, thank you for your reply. I really appreciate your insight and hearing about your experience. I didn’t realize that it takes so long to get out of our system.

Hi Dorothy - I take 20 grams / day.

PebblesV

AMLmom - you’re not alone on the breast soreness, I feel it too and wonder if it’s the scar or what. For me it’s not pain but every now and then tender as you said

Spoonie77

Just wanted to bump this for anyone that is new and looking for info on Tamoxifen. Knowledge is power. And there can be information that gets lost in the shuffle and the fear along the way.

Even though Tamoxifen wasn't a drug I could tolerate, I hope everyone that needs it has smooth sailing and no recurrences ahead.

Light and healing to you all, my friends.

Togethertolearn

Been on my 20mg 3 months. Did not take it tonight, hoping I can feel less sad by doing so. I feel so weird and zombie like. Other posts claim some people feel so much better even after skipping just once - I hope that's the case for me too! I need to LIVE!

Askmissa

Togethertilearn - you might ask to be placed on Lexapro if you are feeling sad. Please see someone. There are options that can help you

Togethertolearn

I'm going back to my 20mg CBD capsules twice a day for anxiety, which was recommended by my cancer surgeon, seriously! CBD seemed to react to the tamoxifen, although when I stopped the CBD I still felt awful on tamoxifen. I know of felt ok on CBD only.

DorothyB

Together - could you tell a difference this morning? I'm one who skipped my pill two different times and felt a big difference both times.

Togethertolearn

I actually felt extremely anxious this morning. I'm feeling better after takingCBD at 11 this morning though.

Reagan14

I just finished my radiation and they r wanting me to start tamoxifen and Like you I am leaning towards not for all the same reasons. My oncologist said I have a 50% chance of it coming back so that is very very scary bc if my little ones. How are you doing and are you happy you didn’t do hormone therapy. I just need to be reassured I am making the right decision to not take it. Also can you tell me what stage breast cancer you had? Did it get into your lymph nodes? Hope you are well and I look forward to hearing your thoughts and experience.

Peregrinelady

No one can reassure you that you are making the right decision to not take Tamoxifen. Only you can make that decision. You need to ask yourself, if it comes back as metastatic cancer, will I regret not taking Tamoxifen? Many women state that they do not want to take the antihormonal drugs based on what others have said. Unless you try them you will never know how they affect you. The side effects can vary so much, from
tolerable to intolerable. With little ones, I am not sure why you wouldn’t want to do as much as possible to survive.

MsPrecious

I had stage 1b, there was lymph node involvement but at surgery the 2 lymph nodes that were taken out came out clean (no cancer in them). I started Tamoxifen in November 2019 (I took a month off, I was meant to start in October) and it's been tolerable. Other than joint clicking, no unbearable side effect. I'm in my early 40s. I'll do anything to ensure it doesn't come back. If I was able to go through chemo side effects and it didn't break me, I'll go through tamoxifen and I'll be fine. All I want is a good life to live till 85years

Togethertolearn

I've restarted after two months off, but with 10mg at night not 20. Why? Because my emotional 'issues' didn't change, still a mess whether in or off tamoxifen. Today is day 6 of new dosage. Yesterday I noticed the persistent nausea coming back, and like before, too nauseous to brush my teeth well in the morning because I may barf (like during morning sickness when you brush your teeth then barf) Also yesterday I became aware that I would just stop and stand like a zombie, which happened before too. Will keep taking it, but for how long I do not know.

Spoonie77

Hi Reagan - I'm sorry you're here in the Cancer World. I wish I had reassuring words that whatever decision you make is the "right" one, but I don't. We all have to cross that scary bridge unfortunately. I hope you find peace with the path you end up choosing. I will say that researching, learning, asking questions, and trying options gave me as much peace as I could with the decision I made. Hopefully that will be the case for you as well.

For me, even though I had a choice in the early months in regards to Tamoxifen, by fall of 2019 I didn't end up having one left to me.

My medical conditions determined it for me. When I tried Zoladex for Ovarian Suppression last summer (2019) I found out I have a life-threatening allergy to these medications. So that took that alternative away as well as the Tamoxifen I'd already unsuccessfully tried. Later in Sept I was dxd with MS. My Oncologist said that due to my new dx and the extreme difficulty I'd had on 5 mg of Tamoxifen she wouldn't advise me to continue further anti-hormonal txts. These (surgery/hysterectomy & post meno meds) would very likely exacerbate and progress my MS according to most recent studies. She wasn't willing to make a KNOWN morbidity worse in the hopes of POSSIBLY avoiding a recurrence, even with my RR being between 28-35%. Soooo I'm without a net and hoping that I made the right choices with my LMX and RADs, as that's all that I have available. The rest is up to the Universe.

If I can give you any other info, let me know. Happy to help.

Best of luck and success TogetherToLearn and MsPrecious. One day at a time.

Wishing everyone light and healing....

Togethertolearn

Spoonie77 oh my goodness, from one health battle to another , I'm so sorry to hear that! Crossing my fingers that you can have peace - I can't imagine the daily physical and mental battles you must face. Hoping also for encouragement to rear it's head on the harder days, some sort of light to cross your path and brighten the moment when you are low. Wishing you the best.