Bottle 'o Tamoxifen

Trvler

Noni: I hope it works for you!

Jojo: Thanks for the recommendation. I ordered one already.

Scottiemom11

jojo. . .thanks for the link, I have it saved and will probably order it for when we travel. I have only a cheap mask.

Noni. . .hope it works for you. Hugs.

Scottie

KateB79

Contoured mask for the win. I've experimented with all kinds of masks, and the contoured one is the best.

Re: eczema on legs . . . I have it too! It never occurred to me that the tamoxifen could be causing it.

molliefish

Well that was fast. Picked up my first repeat on my script today. 90 days down, 1735 to go

Jumpship

I have to ask...I've been on this fun pill for 12 months now. I'm 12 months post-chemo and 4 months post-Herceptin. My calves hurt so bad! That dull pain. My thighs ache too. Falling asleep is difficult. Then I only sleep for a few hours. I feel like my internal clock is off-wants to rise at 9am which totally won't work. My favorite time of day is when I do wake up in the morning because it's the only time of day I'm not hurting. My joints are okay but I'm fatigued and have lots of leg dull aching pain, with back spasms. Anyone else? Any solutions?

Occovegirl

Hi Jumpship I have been on my tamoxifen for 5 months and have

The same dull aches and problems with sleep. I am six months post radiation and have lymphedema and pains in my left breast too. You are not alone. I do some times take Advil and that helps with pain. I also find walking helps a lot for exercise. I sometimes feel like the tin man needing oil. But once I start it gets easier and takes aches away.. I was told also to swim. It helps. Some days are harder than others but I try to stay positive and keep fighting strong!!! I hope you find some of these little things help you too.

lala1

Jumpship--Ask your doc if you can try turmeric and ginger. My 70something year old dad agreed to try them after he saw my success. He hasn't been able to golf or hunt for the last couple of years due to knee pain. He also said he barely sleeps and just roams the house at night because movement is the only thing that helps. He's had injections which helped for a few months. I talked to him recently and he literally said "Oh my god!" when I asked how they were working. (My dad never gets surprised at anything. He's a retired doctor and thinks supplements are hocus pocus.) He said he played 5 rounds of golf in one week and few weeks ago. Turmeric and ginger are both anti inflammatories and research shows they are very helpful for arthritis which may be why they help my Tamoxifen joint pain.

ORgal

I had terrible knee joint pain that started all of a sudden. I then started taking glucosamine (3 a day) and that was the only thing that helped. I tried weaning off and they hurt again so kept it up. Then, on advice from several on here I started the ginger and turmeric. I think it's really helping, and I'm now weaning down to 1 a day of the glucosamine and hoping to stop taking it soon.

lala1

ORgal---Glad to hear the turmeric and ginger are helping. Please keep us updated because I have been recommending this stuff to everyone and I want to make sure it really is working. It worked like a champ for me but I like to hear how it helps others.

ksusan

What daily dose of glucosamine are people taking?

KateB79

Following the glucosamine discussion.

Also: has anyone else had menstrual cramps without menstruating? I swear this new brand (Mylan) is causing a lot more SEs than the Teva did. . . Back pain, cramps, inveterate and unforgiving night sweats. . . .

I'm done complaining now. I plan to ask for Teva next time.

Peachy2

I also have Mylan, but I might be too old for cramps... I am, however, getting night sweats like crazy.

Scottiemom11

For leg and joint pain I take mag citate. Dh takes glucosamine. I am also on turmeric which helps the HFs.

Scottie

molliefish

update re the eyes:
I had a check up with the opthamologist following chemo as my eyes were pretty irritated. She didn't say too much three months ago and suggested Blinks or some other preservative free drops, omega three supplements and hot compresses. She asked me to research restasis but said it's pretty pricey and not covered by insurance. I was told today that the cornea are irritated and that I should We the drops at least daily and the omega 3. Now I already have eggs a lot which have omega 3 but does anyone have any recommendations for an O.t.c. supplement

BBwithBC45

Molliefish, my eyes got very dry and I had issues with blurry vision. I tried otc rewetting drops for a few months and nothing was helping. Finally I gave in and had my ophthalmologist prescribe me the Restasis. I've been taking it for a little over a month and my eyes are already feeling better.

KateB79

Molliefish, I'm a big fan of the Metagenics brand. I've taken a lot of different kinds of fish oil over the years, and this one 1) doesn't break out my skin, 2) doesn't cause fish burps, and 3) has a good amount of EPA/DHA.

lala1

Funny enough, I get my fish oil from Sam's Club. My MO said to always use one that has the highest amount of Omega 3 (DHA+EPA) you can find. The one at Sam's has 1400mg of fish oil and 900mg of that is Omega 3. He said shoot for at least 800mg and 1000mg would be even better. I find the Sam's one easy to take with no fishy burps.

molliefish

Thanks all, I should have put this in the August Chemo thread as the dryness is a result of the chemo they think, not the tamoxifen... off to the fish oil store :-)

Molly50

Hi there. Are any of you post menopausal? I am on an anastrozole break and MO mentioned switching me to Tamoxifen if my SE's resolve on the break. I am trying to figure out what I feel comfortable doing.

Anonymous

Hi Molly, I'm post menopausal, but I'm on tamoxifen because of osteoporosis. My oncologist said they are pretty much the same in benefit starting out (2 years Tamoxifen, then switch, or 5 years and then switch) but AI is preferred because of less serious long term side effects.

LynnBM

Hi all, I just completed radiation o Tuesday and have to start Tamoxifen. I'm thinking of delaying for 2 weeks just so that I'm not so tired and to give myself a break. I'm still hesitant about the SE of Tamoxifen from reading all of the posts. Any suggestions? Thanks

Zelda33

Hi LynnBM -

First of all Congratulations on completing Radiation!

Secondly, I waited to start Tamoxifen too. My onc said that it was ok for me to wait a bit because more important for me to stay on the Tamoxifen long term rather than starting right away. I am 7 weeks out of Radiation and just started it this week. I haven't had any SE yet. You should ask your onc about waiting.

Hope that helps.

Trvler

I finished radiation the day before Thanksgiving and waited until Jan 1 to start Tamoxifen. So far the only SE's I have are hot flashes, which I was already having and now I am having a muscle pain in my right bicep when I move it a certain way. Since I never had anything like that before, I am attributing it to Tamoxifen.

DeeRatz

I took my Tamoxifen the very day I got it. I would do Anything I could do to prevent my cancer from coming back. Tamoxifen side effects are minor compared to the Shit show that surgery and chemo were. I NEVER want to deal with that again. If my little white pill is my saving grace I will gladly take it. Sure I have some side effects, but they are way better than having the big C rear its ugly head again. The longer I take it the better I feel. Don't be scared, have an open mind and just roll with the hot flashes. Sure they are brutal, but it reminds me that the Tamoxifen is working. If I was totally unaffected, I would wonder if it was being effective.

Good luck, You got this

Jabe

Hi. I've been on tamoxifen for about three months and was rolling along pretty well. About a week ago I started having pelvic pressure/cramping/burning discomfort. I had a transvaginal ultrasound and found out (as I expected) that I was the winner of the side effects from tamoxifen of increased lining of the uterus and 3 cysts on my ovaries. Two MOs and my gynecologist all agree to get another Ultrasound in 6 weeks. They say this is all "normal" on tamoxifen No one seems concerned and are particularly nonchalant about the discomfort. Anyone else dealing with this

lala1

Molly50--I'm post menopausal and on Tamoxifen. I have been since my TLH/BSO in Jan 2015. My docs and I have discussed swapping to an AI but they all agree that for now it's better I stay on Tamoxifen since I do so well on it. I've had all the usual SEs like joint pain, nausea, hot flashes, sinus issues, etc but I've found solutions that work for me. i do wonder if I should swap for the extra benefit but my docs say that the increase in joint pain and such would outweigh the 1 or 2% reduction in recurrence rate. I've been on Tamoxifen for 3 years so I'll probably revisit the idea of swapping at 5 years. My BS says that compared to Tamoxifen, AI SEs are brutal. And although the risk of blood clot is greater with Tamoxifen, he says he's comfortable with a daily aspirin to counterbalance that.

Jabe--I was also a winner of SEs from Tamoxifen...thickened lining, cysts, fibroids, etc. They were found in April and watched via TVUS every couple of months. No real changes and no one seemed to be worried. Then in Dec everything showed up quite a bit worse so I bit the bullet and did the total hysterectomy that Jan. Other than increased hot flashes that I manage pretty well, I feel really good. I'm really happy I did it and don't have to worry about that part any more. I am 52 but wasn't in menopause yet so I don't know if that makes a difference for you. I think there is a lot of Tamoxifen that involves watchful waiting!

Jabe

thank you lala1. That helps to hear it as "watchful waiting". I'm 43 so I think the docs are hesitant about pushing me permanently into menopause until we know if I've for sure chemically been put there from chemo

momwriter

Like Lala, I'm also on tamoxifen because I'm tolerating it well and benefit of AI is outweighed by the manageable side effects and the fact that AI's have their own set of intense and even life shortening side effects as well. I will switch when the time comes because I know I will have to, but I'm okay with this for now. I just pray that it keeps working. I hope scientists are pursuing an alternative to both tami and AI!

Molly50

Thank you to those that are post menopausal that answered me. I had not considered taking daily aspirin. That may put my mind at ease. We have a family history of stroke and heart disease on my dad's side. My SE's on Anastrozole were getting worse by the day. So I need to switch to something.

lala1

Molly50---I lost my sister 8 years ago to a heart attack. She was 39. (She was obese with high BP, high cholesterol, pre-diabetic, and fighting PCOS which is really hard on your heart, She had also had chemo many years ago for Hodgkins.) So I have that family history as well. My MO and BS were comfortable with me on Tamoxifen as long as I took the aspirin. I did get lots of bruising taking one a day so my MO said to take it twice a week. He feels it works just as well as that dose. I also met with a holistic doctor who used to be a breast cancer doc before he retired. I went to see him to see if he could help with the joint pain from Tamoxifen. I told him my medical history with the BC as well as my sister's history. He suggested I take turmeric and ginger. He said both would help tremendously with the joint pain but as an added bonus, they were very good for heart health. He was absolutely right about helping with joint pain (from a 8-9/10 pain scale to a 1-2/10) so I'm hoping he's right about fighting any inflammation for my heart. So far, so good!!