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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Hello Peggy, Thanks for the info on Xgeva, hope your bone density is doing better now. Yes they now have many ways to treat Lung cancer I just had my first chemo treatment 2 1/2 weeks ago, they started me on Keytruda and Taxol-Carbo all went very well then around 4 days in felt like I got hit by a truck for around a week, wow you went through a lot with 33 rounds of radiation hope you are doing well going through all that.

stay healthy happy Spring
Cynde

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Profile picture for loula @loula

hello Peggy I was reading your comment to mom23boys, was wondering what shots are you taking for your bones?
I have osteoporosis and dr. is wanting me to go on prolia. do the shots help with bone loss? I am a stage 4 lung cancer patient.
thanks any advise will help.

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Hi Loula! How are you doing today? I get Xgeva (Denosumab) shots every 3 months or so to strengthen my bones. Besides mets from my breast cancer I also have osteoporosis and osteopenia they found when doing my work-up at diagnosis and did a bone density test. I'm not fully understanding all that is accomplished by the Xgeva but I copied this from on-line and maybe it's better than how I could explain it. Xgeva is a brand (trade) name for denosumab. Denosumab is a monoclonal antibody that is used to prevent bone-related events by binding to a protein called RANKL on osteoclasts (the cells that break down bone), inhibiting their formation, function, and survival. This decreases bone breakdown and increases bone density and strength in both the outer layer of bone and the inner spongy layer inside the bone. I hope that helps. I'm not real good at explaining a lot of this medical stuff.
I am just curious as to what type of treatment you receive for Lung Cancer, if you don't mind. I lost my mom to LC way back in 1987. All they had for her at the time was a radioactive isotope they implanted and some outer radiation txts. I hope they've come much further with their treatment options. I wish you all the best!

Peggie

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Profile picture for mom23boys @mom23boys

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

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hello Peggy I was reading your comment to mom23boys, was wondering what shots are you taking for your bones?
I have osteoporosis and dr. is wanting me to go on prolia. do the shots help with bone loss? I am a stage 4 lung cancer patient.
thanks any advise will help.

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Profile picture for mom23boys @mom23boys

Trixie, Glad to hear you are doing well. Just remember, if you ever do have to deal with lung mets, I have numerous lung nodules and 1 22mm mass that have all been shrinking on the meds. My breathing is no different, and has never been labored. People freak out at the thought of lung involvement but like all else, we are making strides in treatment.
Peggie

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@mom23boys
Thanks, Peggy. I've made a note of that to remember. I had the bronchiectasis/atelectasis about the year before I found my cancer. That scars and thickens the lungs - in my case, the lower lungs. The mucus gets stuck in the little air tubes...it's kind of like cystic fibrosis in kids. I had seen information on n-acetyl cysteine (NAD) that helped people with COPD for their lung problems so I thought, what the heck, I'd try that as I have to wear a machine that basically thumps the lungs to break up the mucus. So it's pretty coincidental that they had seen a couple of nodes all along and then since starting this supplement they reduced in size. I can now breathe fairly normally again. So much has happened in the last couple of years for patients with lung cancer - it is just amazing. A friend in my local cancer support group recently had surgery for her lung met and is doing well. The best way forward is being positive and that's how you appear to me. All the best to you, Peggy.

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Profile picture for trixie1313 @trixie1313

@mom23boys
Thanks, Peggy - Doing pretty good. Have my next PETS scan at the end of this month. Had to go to every 3 months when they thought I had mets in lungs, but they got smaller so probably due to my bronchiectasis with atelectasis (nver been a smoker and this is what I get?!). Seems like the walking every day helps quite a bit and am trying to get some weight off of this short body!!! Thanks for thinking of me and hoping all continues to go well for you as well...so glad we have this group!

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Trixie, Glad to hear you are doing well. Just remember, if you ever do have to deal with lung mets, I have numerous lung nodules and 1 22mm mass that have all been shrinking on the meds. My breathing is no different, and has never been labored. People freak out at the thought of lung involvement but like all else, we are making strides in treatment.
Peggie

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Profile picture for cctoo. Catherine Crowley @cctoo

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.

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@cctoo
To clarify, Laurie didn't say that AI's kill cancer cells. She noted that, since her sister did not have chemo or radiation which do kill cancer cells, her sister's oncologist prescribed an AI. As to Stage 0, it is indeed cancer -- "Stage 0 breast cancer, ductal carcinoma in situ (DCIS) is a non-invasive cancer where abnormal cells have been found in the lining of the breast milk duct. In Stage 0 breast cancer, the atypical cells have not spread outside of the ducts or lobules into the surrounding breast tissue."

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Profile picture for cctoo. Catherine Crowley @cctoo

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.

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cctoo @cctoo, AI do not kill cancer cells, they suppress estrogen which will cause cancer cells to grow. My sister made her decision based on medical facts and discussion with oncologist. I would never 2nd guess her decision. Everyone has to make their own decision.
Laurie

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Profile picture for cctoo. Catherine Crowley @cctoo

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.

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@cctoo
I have a few friends with Stage 0. It is cancer, but it just means it hasn't traveled elsewhere, that is it is "in situ" or in place. And how great is it that anyone is diagnosed as Stage 0 to have caught it that early. So whether we are Stage 0, 1, 2, 3, or 4, we have all been confronted with the concept of our mortality.

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Profile picture for mom23boys @mom23boys

Hi Trixie! How have you been? I've heard quite a few women say that Exemestane worked best for them, with few side effects compared to others. I hope you are doing fine and will remain so.
Have a great day.
Peggie

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@mom23boys
Thanks, Peggy - Doing pretty good. Have my next PETS scan at the end of this month. Had to go to every 3 months when they thought I had mets in lungs, but they got smaller so probably due to my bronchiectasis with atelectasis (nver been a smoker and this is what I get?!). Seems like the walking every day helps quite a bit and am trying to get some weight off of this short body!!! Thanks for thinking of me and hoping all continues to go well for you as well...so glad we have this group!

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Profile picture for trixie1313 @trixie1313

@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.

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Hi Trixie! How have you been? I've heard quite a few women say that Exemestane worked best for them, with few side effects compared to others. I hope you are doing fine and will remain so.
Have a great day.
Peggie

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