Aromatase Inhibitors: Did you decide to go on them or not?

Posted by nanato6 @nanato6, Oct 12, 2018

Nanaloves: I’m about to start arimidex and just feel that the contraindications , bone issues etc. are overwhelming. I’m 70 years old, dodged a bullet I feel with zero stage DCIS but the follow up is pretty much no different then if it was more aggressive. I’ve just done 33 treatments of radiation and now they advise arimidex as a preventative. I’m not sure with the beginnings of arthritis and lower back. sensitivity already that I should take it. Anyone not take it and not have a recurrence within the 5 years.

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mom23boys | @mom23boys | Mar 18, 2021

In reply to @rababkoepp "Thank you so much Peggie. I just hate the way it made me feel" + (show)

Rabab, Totally understandable.It is so much a personal choice. Some people choose no txt due to age or just the opposite, their active lifestyle. Absolutely an individual choice of what is best for YOU. I can only monday-morning quarterback. What would I have done in the same position????
You take care.
Peggie

mom23boys | @mom23boys | Mar 18, 2021

In reply to @sparklegram "@mom23boys I wish you all the best, too. Sending you hope for a complete recovery." + (show)

Thank you sparklegram! We all just need to hang in there. This "condition" is working its way toward being labeled "chronic" instead of terminal for us stage 4. New treatments coming our way and so many more options currently available. There is lot so hope!
Peggie

cctoo. Catherine Crowley | @cctoo | Mar 18, 2021

In reply to @roch "It is discussion you need to have with oncologist, but at end, it is your decision...." + (show)

Laurie, I didn't think ale killed cancer cells! They just prevent estrogen! So why would your sister take them? Stage 0 is not really cancer either...research it.

rababkoepp | @rababkoepp | Mar 18, 2021

In reply to @roch "It is discussion you need to have with oncologist, but at end, it is your decision...." + (show)

Thank you Laurie!! I will make an appointment with my oncologist and follow
through. I appreciate your response very much.
Rabab

trixie1313 | @trixie1313 | Mar 18, 2021

In reply to @rababkoepp "Good morning ladies :-) my name is Rabab. I was diagnosed with invasive ductal carcinoma stage..." + (show)

@rababkoepp
I also had invasive ductal breast cancer, but in addition had a secondary tumor that is neuroendocrine cancer. For this reason I will remain on the AI and also have to undergo PET scans every 6 months due to the aggressive nature of the NET. I was first placed on anastrozole, then letrozole, and have found that exemestane has few bad side effects for me. I truly understand your reasoning and wish you all the best and hoping you get the answers you are seeking.

rababkoepp | @rababkoepp | Mar 18, 2021

In reply to @mom23boys "Hi Rabab. I have stage 4 Invasive Ductal Carcinoma. I was diagnosed "denovo" (stage 4 right..." + (show)

Thank you so much Peggie. I just hate the way it made me feel

Laurie, Volunteer Mentor | @roch | Mar 18, 2021

In reply to @rababkoepp "Good morning ladies :-) my name is Rabab. I was diagnosed with invasive ductal carcinoma stage..." + (show)

It is discussion you need to have with oncologist, but at end, it is your decision. The percent of recurrence with and without AI will depend on type cancer, prior treatment and genetics.

I am 65, had stage II breast cancer (one breast / 2 lymph nodes). I was on AI 6 months prior to lumpectomy, chemo and radiation. I tried 3 different AI meds over 6 months after radiation and decided to go off due side effect. I feel better off the Ais. Prior to decision I discussed with oncologist and my percent of recurrence without AI was only few percent points. It has been over 2 years since surgery and I continue to see oncologist every 6 months for recheck and have mammogram / MRI yearly. I have an MRI because my breast are very dense.

But, by sister had Stage 0 and diagnosed very early, she had lumpectomy, no chemo or radiation. In her case, the dr said it was important for her to take an AI because she had not had chemo or radiation to kill any cancer cells remaining.

So, have discussion with you oncologist and get the facts.

Good luck
Laurie M

sparklegram | @sparklegram | Mar 18, 2021

In reply to @mom23boys "Hi Rabab. I have stage 4 Invasive Ductal Carcinoma. I was diagnosed "denovo" (stage 4 right..." + (show)

@mom23boys I wish you all the best, too. Sending you hope for a complete recovery.

mom23boys | @mom23boys | Mar 18, 2021

Hi Rabab. I have stage 4 Invasive Ductal Carcinoma. I was diagnosed "denovo" (stage 4 right from first diagnosis). I take Letrozole with my other meds and found the achy joints dissipated after awhile (7 months or so). I have also experienced hair thinning that started about that far in and then stopped, but has restarted. I know there are other Aromatase Inhibitors out there that you may want to check into to see if they would have a lesser affect on you. Personally, I recommend taking them and hope you never get to stage 4. Side note: I am doing terrific on Ibrance/Letrozole and shots for my bones as my cancer is in my femurs, humerus, and lungs. All are shrinking and I lead the same life as I did prior, no changes and I'm just coming up on 2 years. I wish you all the best!
Peggie

rababkoepp | @rababkoepp | Mar 18, 2021

Good morning ladies 🙂 my name is Rabab. I was diagnosed with invasive ductal carcinoma stage two almost 2 years ago. I took Letrozol For four months and experienced joint pain and fatigue and I decided to opt out of taking medication and changed my diet and lifestyle. So far so good. I’m writing because I am very curious if anyone has gone off medication and how they’re doing and what lifestyle changes have they made. I am worried about recurrence as well. So please help me if you know of anyone Who has gone off the medication and how are they doing!!!