Alternative to Tamoxifen other than AI

Posted by luckbme @luckbme, Jun 25 11:45pm

I had lumpectomy and radiation for invasive ductal carcinoma stage 2. Went through both very easily. Then I was told to start Tamoxifen. Nothing easy there. I'm miserable so taking a break after two and a half months. I should not take AI because of osteoporosis. And I've read that Tamoxifen results are all the way from 40% to 80% effective to keep cancer from recurring. Which is it? And surely there are other similar drugs to Tamoxifen? Anyone?

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Hi. I'm 73, had DCIS in right breast 15 years ago, had a ductectomy & course of radiation. Diagnosed this year with invasive DC right breast, so had a mastectomy on June 12. Healing from surgery pretty well, but intense, ongoing burning pain across right chest & armpit. Radiologists' office says probably nerve pain from last course of radiation, triggered by the trauma of the mastectomy. Makes me very wary of having radiation again, which is the suggested treatment. Anyone else have this experience?

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Profile picture for lauriecub @lauriecub

Hi. I'm 73, had DCIS in right breast 15 years ago, had a ductectomy & course of radiation. Diagnosed this year with invasive DC right breast, so had a mastectomy on June 12. Healing from surgery pretty well, but intense, ongoing burning pain across right chest & armpit. Radiologists' office says probably nerve pain from last course of radiation, triggered by the trauma of the mastectomy. Makes me very wary of having radiation again, which is the suggested treatment. Anyone else have this experience?

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Soo sorry you are going through this. I haven't had your experience but sending many good thoughts and karma your way.

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Profile picture for jig4891 @jig4891

Hi. Was your cancer HER+?

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eRpr +. Her-

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Tamoxifen can cause a second more debilitating

cancer,beware! So many horrible options are making us into lab testing animals.Read some of the studies and test results regarding all the AI’s. It is a way to become better informed.

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Following up. I had televideo appointment with my new oncologist this afternoon. I purposely have not bad-mouthed my first oncologist; but today my new doctor asked me outright what I was told previously. So I said exactly "he told me he could guarantee my cancer would come back within two years if I didn't take the Tamoxifen. 82%!" My current doctor looked at my DX score of 21 and kI-67 of 10% and said not 82% more like 5%. Definitely tops at 10%. I don't think it's wise to get into arguments with a doctor but next time I sure will change doctors a lot sooner. I am angry with myself for waiting 4-1/2 months. The last 2-1/2 months I was miserable because of the Tamoxifen. My own fault for not doing the research earlier.
And thank you for all the knowledge I've picked up in this breast cancer support group. The best was the Google Scholar search. How wonderful to read the actual studies, and that gave me so much more confidence in myself.
By the way, I've decided to go back on the bone density meds because I stopped them some years back because the dentists didn't want to work on me for fear of deadening of the jaw. Well, I'm going back on the meds now. Osteoporosis in left forearm. Osteopenia in rest of my body. And to be fair, my doctor today did say I might change my mind after a few months and take a smaller dose of Tamoxifen. I will keep reading. He must have had a reason for saying that. For now, I didn't want to ask him. It's been too good of a day, getting rid of that horrible (for me) pill.

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Profile picture for lauriecub @lauriecub

Hi. I'm 73, had DCIS in right breast 15 years ago, had a ductectomy & course of radiation. Diagnosed this year with invasive DC right breast, so had a mastectomy on June 12. Healing from surgery pretty well, but intense, ongoing burning pain across right chest & armpit. Radiologists' office says probably nerve pain from last course of radiation, triggered by the trauma of the mastectomy. Makes me very wary of having radiation again, which is the suggested treatment. Anyone else have this experience?

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lauriecub...I had my bilateral mastectomy on May 12th. Almost 2 months now.
Ironically my chest scars are hurting me more than in the early weeks of post recovery.
Yes, I have had all kinds of pains in my chest - burning, stabbing, a heaviness, sensitivity to any type of bra or clothing rubbing on my scars...and to me, the scars look more swollen!
It doesn't seem to be decreasing and I am 2 months out.
I will ask the same question you did - anyone experience my situation? Plus...
When will the swelling decrease? When does the pain/discomfort stop?
When can I wear a prosthetic?

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Profile picture for briarrose @briarrose

lauriecub...I had my bilateral mastectomy on May 12th. Almost 2 months now.
Ironically my chest scars are hurting me more than in the early weeks of post recovery.
Yes, I have had all kinds of pains in my chest - burning, stabbing, a heaviness, sensitivity to any type of bra or clothing rubbing on my scars...and to me, the scars look more swollen!
It doesn't seem to be decreasing and I am 2 months out.
I will ask the same question you did - anyone experience my situation? Plus...
When will the swelling decrease? When does the pain/discomfort stop?
When can I wear a prosthetic?

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Briar rose, the nerve pain is finally subsiding, either through time or twice/daily applications of Voltaran. I still have center of chest deep pain, but not debilitating.

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Profile picture for lifetraveler @lifetraveler

Hi! @timely :

I am so sorry for all you've been through, my comrade; surely fighting the disease of BC is no walking in the park:(

Could you please let us know the reason for avoiding taking calcium tablets, please? I know 3 doctors had avised you on this, but did they give you the reason why?

Prayer for you and all of us for better health with plenty of pleasure enjoying beloved family on journey ahead!

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I think that the cardiologist was concerned that tablets can put calcium deposits in blood vessels.

Gynecologist just said to not use when I saw her before my lumpectomy.

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There are side effects anda longer recovery with a complete mastectomy.
It is not a walk in the park.

I think that when diagnosed, all I could handle was a lumpectomy.
I was 1B ILC left breast and this is what the breast surgeon supported me with.

Even with a mastectomy, you would be put on an Aromatase inhibitor.
You would just avoid the radiation treatments.

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Profile picture for briarrose @briarrose

This is a serious issue for those of us with co-morbidities such as heart disease and bone density issues post-menopause when our oncologists recommend such medical treatment - post lumpectomy or mastectomy & chemo nor radiation would not be indicated for us.
I understand tamoxifen is indicated only for pre-menopausal women(??)
And all 3 AI's have the same side effects but can possibly a change can be an improvement if having serious issues with another one - it's all how our bodies react to it.
worried1111: I, too, would like to see your source of your study indicating a re-occurrence chance decreases by 50% - my number is 4% within 9 years of AI treatment as per the oncotype diagnostic testing, so in 9 years it would 2% re-occurrence chance? Personally I would not depend on ground seed flax treatment - but whatever you feel works for you! No judgement here.
And jig4891: Lots of questions re: fasting more than 13 hours...how often do you do this? are you taking the AI while fasting? what is your fasting schedule and how does it make you feel better? do you get relief from the side effects of the AI during your fasting time period?
I am 70 years young and my bilateral mastectomy was in May. Stage 1 in left breast, stage IIa in right breast.
Vitamin D3 & Calcium supplements indicated...but the range for the calcium is 1200-1500 mg. daily. The calcium supplements are so expensive, impossible just to take 10 pills per day to reach this goal. So, calcium rich foods indicated. I am going to check with my nutritionist to get her thoughts. Also, strength training is very important at our age for our bones to prevent fractures. Will look into that also.
Lots of us are between a rock and a hard place with cancer...when the follow up recommendation is only AIs.
What to do? I don't believe any of us are getting clear information from our oncologists about this so we can make an informed decision that makes sense.

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As far as calcium.
My phycologist gave me a way to get the best calcium.
Save all your egg shells
Boil them and then cook them in the oven on low about 20min.
(This is what I do) when they are cool grind them up into a fine powder. (I keep mine in a small glass jar)
Then mix 1 teaspoon in some Greek yogurt or cottage cheese.
I mix cottage cheese, any kind of fruit (blueberries) and a little raw honey. Easy to eat, doesn’t cost anywhere what the supplement cost.
Hope this helps.

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