Bottle 'o Tamoxifen

Lovinggrouches

I get short of breath easy with any exertion and I get intermittent sharp pains dead center in my chest. The other day, the pains started around 2 pm after dancing in my chair to music at work and came and went all day until about 10 pm. MO said that only 5 percent of patients on tamoxifen have chest pain and that tamoxifen cannot cause shortness of breath. I too had leg cramps but had dramatically improved after taking magnesium glycinate daily. I was taking baby aspirin every day, but also bruised easily and changed to every 3 days. When the chest pain started, I was afraid of blood clots so went back to every other day. I wish my MO would just do a darn chest ct. I don’t think it’s a heart issue

Egads007

Shelabela - I would average 19 to 20k steps per day at a very quick paceand it made very little difference to the leg probs. Only starting weight bearing leg exercises did the trick. As for bruising, yes, definitely, especially on the insides of my arms.

AnnN

lala1-just wondering if you have had any improvements or other withdrawal symptoms since you are off tamoxifen. Did you have side effects?

lala1

AnnN--I had the usual SEs like muscle and joint pain, weight gain, vaginal discharge, thinning hair (on my head. Unfortunately it was the opposite on my face!) and constipation. I actually didn't have hot flashes till I had the hysterectomy but now I have them fairly often but fortunately not too strong.

I've seen my muscle and joint pain go away completely. I haven't lost a single ounce of weight so I guess I'd have to admit it must be me and not the Tamoxifen. Dammit.... My vaginal discharge actually got really bad about 3 weeks after stopping but last week I finally got some Diflucan from my gyn and although it didn't cure me, I'm about 85% better so I'm guessing that was a yeast infection. Haven't had one of those in decades so I really think coming off the Tamoxifen might have just thrown my body out of whack. The hair on my head is starting to thicken back up ( and I say that as someone who has very fine thin hair to begin with) and I've definitely quit growing a stupid beard on my face. Hot flashes are no better but also no worse. So I guess coming off has got some good points and some not so good points.

I never had really strong SEs on Tamoxifen, nothing I couldn't deal with using supplements or exercise and yoga. I've gotten my BCI test results back and find myself in the very small group of people who are High Risk for Recurrence but Low Benefit from continuing Tamoxifen. Kind of makes me wonder how much good it actually did me for the last 5 years. Not that I wouldn't have taken it and not that I'm not totally positive that some of the SEs were a result of it (hello joint pain!) but I'm realizing I can't blame all my issues on it. I was approaching menopause when diagnosed and tossed into it surgically 2 years into Tamoxifen. Might be some of my issues were menopause driven.

I will say that coming off it was a lot like starting it. I had nausea, dizziness, bloating and mild headaches when I first started. Once I upped my water intake a great deal, those issues went away. When I stopped Tamoxifen, I experienced those same issues but milder. I again upped my water and they all subsided. Now to just figure out how to drop these stupid 15 pounds I gained while on it....I just love food too much!

AnnN

lala1- Thanks for the detailed reply. I'm on year 7 of 10 and have had serious joint pain in 2012 and again recently- both times when my provider changed and l used a brand other than Watson. Since Ive returned to the forum, l am more aware of the continual SEs which I have always believed were menopausal but enhanced by Tamoxifen. My oncologist always asks about SEs, and I advise they were not too bad. At my next visit, I plan to discuss them more closely. The dry skin/rash, thin hair, poor nails, thyroid issues, difficulty sleeping, and continual aches and pains despite regular excecise, together add up to make me consider quitting at least for a few months. Seems shallow, but I'd love to see if I get my old hair back! I'm also wondering about lowering to 10mg per day for awhile before stopping completely.

I didn't see your last post when l quickly scrolled back to check how long since you stopped. I'm considered high for reoccurrance, high benefits. Like you, I was approaching menopause when diagnosed. I never had a period after chemo.

Thanks again.

AnnN

lala1- Thanks for the detailed reply. I'm on year 7 of 10 and have had serious joint pain in 2012 and again recently- both times when my provider changed and l used a brand other than Watson. Since Ive returned to the forum, l am more aware of the continual SEs which I have always believed were menopausal but enhanced by Tamoxifen. My oncologist always asks about SEs, and I advise they were not too bad. At my next visit, I plan to discuss them more closely. The dry skin/rash, thin hair, poor nails, thyroid issues, difficulty sleeping, and continual aches and pains despite regular excecise, together add up to make me consider quitting at least for a few months. Seems shallow, but I'd love to see if I get my old hair back! I'm also wondering about lowering to 10mg per day for awhile before stopping completely.

I didn't see your last post when l quickly scrolled back to check how long since you stopped. I'm considered high for reoccurrance, high benefits. Like you, I was approaching menopause when diagnosed. I never had a period after chemo.

Thanks again.

NormaJean65

To All Tamoxifen Sisters......

I rarely post & haven't been on any forums for a very long time but I got some emails in an old account about the postings on this forum. I decided to jump in here & post what my onco told me in January, 2018. (He is my replacement for the onco that retired but same group of physicians.)

During my appt. I told him I had decided to go off Tamo last January (2017) after he told me he didn't ask "his ladies" with my diagnosis to take Tamoxifen for more than the standard five years. To that I replied, but I had aggressive (but small) BC. He assured me that he had looked at all my records, pathology reports & yes, even my OncotypeDX (that was never intended for ER+ but was done anyway. That's another story,)

This past January when I saw him he told me about the Symposium held in San Antonio, TX 12/2017 which the consensus was that more recent studies done concluded that taking Tamoxifen may not be helpful for any length of time regardless what the diagnosis a women had. I just about fell off my chair. Seriously, after all the SEs & faithfully putting it in my body nightly for 6 yrs. Good Grief !!!

I had all the symptoms you ladies have been discussing. Energy level is somewhat better, but age has laid claim to that now, vaginal discharge stopped, thin hair...well, maybe a tiny bit better, and so on. I am only here to tell you what was said to me. Before doing anything, please discuss with your onco if they are aware of the Symposium & discussions about Tamoxifen last December, 2017. This is my story of this long & sometimes grueling journey. (short verision!! )

Best of Luck to all,

Norma Jean

NormaJean65

I'm sorry, I meant to add one other thought. Someone was talking about "taking a vacation from Tamoxifen" on this forum. Please double check me, but I was told it takes 3-4 mons for it to completely be gone from your body before you can see any improvements of the SE's. For me, it was correct. Didn't really start noticing any changes until I hit that timeline.

Again, always verify with your onco. My original onco was very "old school" and sometimes "hard nosed". Bless his heart, his first wife died from BC so he was alittle more stiff & agressive, understandably.

Paco

I think the San Antonio symposium discussed Anastrozole not Tamoxifen and I believe it was also because the risk of fracture outweighed any minor advantage to the longer treatment.

Egads007

Interesting that NormaJean mentioned that tamoxifen takes 3-4 months to dissipate from the body after discontinuing. I’m due to switch to an AL this coming December. My NP said I would discontinue tamoxifen for 3 months before testing to see if I was postmenopausal. I’ve seen it mentioned somewhere on these boards that others discontinued for 3-4 weeks. Quite a difference.

Any opinions/experiences with switch up timing/menopause testing would be appreciated!

ThreeC

Egads, I think I read somewhere that some people were simply taking a Tamoxifen "vacation" for a month while others were "quitting big T" and it took several months for the T to totally be out of the system before starting another anti-hormone! But... I can't remember where I was reading it.

Another random bit- I tried the Claritin today for bone/muscle pain in my feet. It was amazing how much relief it gave. I actually walked around several stores today with little pain. Note: Claritin D was NOT recommended.

runor

AnnN, about taking 10mg a day, which is half a dose, to see if it makes any difference. I take 10mg a day and I have had all the side effects mentioned here. The only difference with me is that I am losing weight. But I'm sure now that I said that it will find me again, it always does!

I take 20mg every Sunday and Wednesday and 10mg rest of the time. Last night the damn hot flashes came in wave after wave and Hub was wrapped in blankets trying to keep warm and I was a sweating mess laying on top of the covers trying to cool off. Good luck sleeping like that! And the creaky joint thing! Moving around in bed HURTS.

So 10mg might not result in the reduction of side effects you expect. I wanted to AVOID side effects and that's why I opted to go the 10mg route. And bad surprise for me, got all the side effects anyway!

AnnN

Thanks all.

Hapb, I googled symposium san Antonio tamoxifen and found the info. The reports of studies are difficult to understan for me.

Runor, l read your posts, but still have hope that less may result in less SEs. Also l view it as a way to come off without withdrawal symptoms. I have alternated between 20mg one day and 10mg the next because l feared l would have difficulty getting Watson brand. But it appears it is now sold with same pill markings under activis, so I'm going to discuss with doctor be further reductions.

In my list of SEs yesterday, l did not mention l learned from this forum that dizziness, cataracts, and feeling cold accept for hot flashes are SEs l have. Just wondering, does anyone have excessive dryness on the tips of their fingers at the top of their nails? I have and have always blamed chemo, but now I'm wondering.

Thanks for listening.

TWills

Whaaaaa? I’m so curious about what NormaJean65 has posted, and if she heard correctly!My ONC went to that symposium/conference as well and that is not what she got out of it! She did gather from the conference that, for my stats, ovary removal and an AI had slightly “better numbers” than Tamoxifen alone. She didn’t feel it was enough difference for me to remove the ovaries at this time. She said from the beginning and still says that Tamoxifen is the most important part of the treatments I’ve had.

Egads007

All I could find were articles on how 2 years AL after 5 years tamox is plenty good. Beyond 7 years not necessary. I’m not sure my MO would agree.

I’m confidently hopeful that something new and easy to live with becomes available soon.

AnnN

Hapb- www.mdedge.com>conferences

Susan London; oncology practice. Publish date Jan 2, 2018 another published Jan 3rd.

Artista964

Tamox taken for 10 years is more effective than 5 esp for high risk or those who cant do AIs due to ses. Tamox has been around a long time so they are able to research this v they can't be sure with AIs yet. I went to a good talk from an onc from ucsf who also does research last fall. The video of that talk is on youtube. I'll find it and link it here.

It's called strategies to help prevent cancer recurrence with over 80% about bc. Worth a listen. My hospital has free educational talks on everything medical and a 24 hour channel.

Artista964

here it is close to an hour long.

https://youtu.be/Zozbu-7vW3U

gardengypsy

Blownaway- Have you restarted yet? I have just gone off the T for the first time. Wondering if a two-week break is average recommended time off.

Although I still have neuropathy, my leg pain immediately improved the day I stopped taking it

Great. Now I will be afraid to go back on.

gardengypsy

thanks for the video rosabella

VL22

I’ve only been on Tamoxifen since 3/12/17. The worst SE for me is definitely these hot flashes. At night they wake me up at least three times, which makes for a tired day. I’m thinking of trying acupuncture

vampeyes

OMG I am soooo upset. 3lbs in one week!!!! I have been more active in April than I have been since November. 3lbs in one week???!!!! I HATE Tamoxifen and BC. Why couldn't I have one good side effect??? This is very depressing.

Egads007

Vamp - could be water weight, have you eaten more salty or carby foods lately? In order to gain a pound of fat you have to eat 3500 calories per day over and above your daily requirements. Three pounds in one week would indicate that you were eating 5-6 meals a day over the last week...which I doubt you have. Try cutting your salt and carbs way down, drink lots of water and weigh yourself again on Friday or Saturday ...bet you see the weight back down. Every time I have a restaurant meal (so much salt!) I'm up 2 lbs overnight from the salt, the next morning I'm down again.

lala1

I don't know if anyone saw the segment on Megan Kelly Today about reducing risk of breast cancer and recurrence risk.

https://www.today.com/health/how-lower-your-risk-b...

The doctor on there said 3 cups of green tea a day can reduce your recurrence risk by 40%!! And regular exercise by 30%. She also says she recommends soy in it's whole form daily whether via tofu or soy milk, She says the science shows it does NOT increase your BC risk. She also suggests ground flaxseed which also greatly reduces risk. Anyone else had their doctor follow these beliefs? I do exercise and I actually eat daily flaxseed with my MO's blessing, but he still recommends not to eat soy. And he doesn't think green tea does anything. Thoughts?

Artista964

green tea is good but there is no definitive answer to the question of reducing recurrence. Cancer is pretty smart. Whatever you eat do it for your general health.

superius

Thanks for the video rosabella.

I am on the 10yr plan. I didn't recall my MO mentioning at the beginning how long I'd be on it. Then one of the Onco researchers from my church choir asked about it, "make sure to do it 10yr if you could".

My S/E are mild. The only noticeable one - Hot Flashes at the beginning, but now it's only warm flushes, I think it's hormone-related, as it only happens after my period (about every 2 months). My MO asked me about my mood last month. I think for most part it's fine. When I told her, "in comparison to many others, s/e is minimum". She replied, "what's important is how they affect YOU. You are not supposed to have to deal with any of these kind of things at your age."

ThreeC

Ladies, While Soy might be healthy for some, for those of us with Thyroid Cancer too, it can make the daily thyroid replacement hormones ineffective. I have to check for soy in everything from vitamin supplements to all grocery items. I'm all for healthy eating, but just like Anti-Estrogen drugs, all foods even healthy ones can effect us differently. For me, raw veggies cause issues, cooked veggies don't.

Georgia1

lala1 - on soy - the latest science is that tofu or soybeans is ok. It's just the processed soy that's in some protein drinks and protein bars that's iffy.

I have not read anything on green tea.

Blownaway

I was off Tamoxifen for about 4 months (gave myself a vacation). The bone pain stopped but not the hot flashes so I can conclusively say they were/are menopausal symptoms for me as I had hot flashes before Tamoxifen. I have now restarted Tamoxifen at 1/2 dosage (3 weeks ago) and the bone pain is back and the hot flashes are no better/worse than when off Tamoxifen. I'm losing hair like crazy. I went on vacation and forgot to pack my 17x magnification makeup mirror. Once back home, it took an hour to pluck out all the mustache hairs. Aaaarrrggghhh!

Egads007

I thought since we're on about soy, some of you might be interested in this breakdown article from my fav Paleo website, interesting read:

https://www.marksdailyapple.com/soy-scrutiny/

Blownaway do I hear you there about facial hair! When I completed chemo and my hair finally started to grow back, the fine fuzz on my face 'bloomed' overnight, especially at the edges of my jaw. You could have stuffed a pillow with it, I mean I had some serious wolfman happening! I ended up waxing it (ouch!). It never came back as bad but I have to drag the wax strips out every few months or else I start howling at the moon!