Switching AI's

Posted by Rom828 @jgallagher04921, Jan 23 6:37pm

Just stopped Anastrozole. Was only one for 1 month. I think Satan made that drug. I feel so messed up mentally. Some physical pain too, but Im an emotional mess. Anyone know when I will feel like myself again? Note: was supose to pick up Exemestane to start tonight, but I feel so messed up, I don't feel like taking anything anymore. I feel like giving up and I haven't even hit my 1 year mark yet. I feel so weak spirited right now. Stupid drugs.

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@rom828
I was nodding at you saying satan made that drug. I always tell people that cancer meds are a deal with the devil. They are a necessary evil, but you just trade one terrible problem for a series of life-changing side effects. I take Letrozole, but also started two other cancer meds at the same time 3 years ago so sometimes it's a bit hard for me to tell which med to assign the blame to for each side-effect. In some cases they cause they same side-effects so we double down on one or more side-effects. I hope you find the AI that works for you since it's an important med in the fight against breast cancer.

@windyshores may have the answer for you with different manufacturers and different fillers. I have a friend with a different type of cancer that can only tolerate the name brand cancer med and not the generic version, but of course the insurance company won't cover the name brand. I've had issues with inhalers where only the name brand worked for me and not the generic. I can't tolerate prednisone, yet I can tolerate methylprednisolone (a synthetic version) that does that same thing. Go figure. Prayers for you.

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@maliamd

Well in my wisdom of 71 years I have finally come to the realization that I will never be the "old" me. I was active, healthy, and a runner and loved my life. I now live with met breast cancer and the treatment that takes away the "old" me. But life is a journey and every chapter has new experiences. So here I am the "new" me. I adapt and change and embrace every experience that life offers me. I ache, have pain, have fatigue but work through it. The "old" me is still here but I now share it with the 'new" me.
Be strong sisters. You can do this.

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Amen! Seize the DAY!

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O yes! Many here are with you. I'm repeating this with Exemestane. It takes 50 hours for elimination. Talk with your onc. (Mine didn't know the half life was 50 hours). Reasonably, ask if you can take it every other day. They may resist. Also ask a pharmacist.
Lymphedema: redlight therapy and a rebounder.
The jumping action of the rebounder is good for the lymphatic system.
The redlight therapy is good for inflammation.
Also diet. Look at Chris Beat Cancer. Fresh organic juices every day along with 2 big salads. Ive done this now for about 90 days. No artificial sugar. My body says “YES! Thank you.” Read his book or consider investing in SQUARE which can be bought online and you can view it forever.
You can purchase a red light panel, mat or light. You want the whole body.
If you can't afford it, look at Planet fitness or a tanning spa that has a redlight bed or stand up (beauty angel). Cost for cost, in the long run, the panel should equal the cost of a one years membership and it will be in your home so you wont have to drive and wait for it to be freed up.
(When i used it, i had to go to a tanning place because the market had few you could buy)
Look at Mito and others. Maybe your Dr. Can prescribe, maybe insurance will pay a part.
Nutrition is key. And without sounding preachy, “God has given us everything for Life and Godliness”
He made our bodies, not the cancer.
Eat only (organic) foods He made. Its costly, but youll eat less.
Drugs are so personalized because everyones chemistry reacts differently. We must LISTEN to our bodies. Sometimes they adjust other times they dont.
You are in control.
Blessings to you and the other cancer sisters.
You are loved. ❤️🌺

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Took Anastrozole for 7 months. Side effects: dry skin, dry eyes to the point of blurry vision; insomnia for weeks; excruciating back pain, when I had never had back pain previously; teariness; mood swings; brain fog; vivid violent nightmares and on 9/15/2022 my left knee blew out (meniscus tear) and put me in a wheelchair for 6 months. Had X-rays on 9/19; 9/21; 9/28 and 11/15. No break. Could not walk at all. Had to go to a knee joint pain clinic in Oak Brook (IL) and have injections from a board-certified physician of 32 ml of an anti-inflammatory and 6 ml of Durolane. Tramadol (50 mg.) for pain. Was in a wheelchair at my first post-operative mammogram on Oct. 3, 2022. Quit the A.I. drugs, which had given me the most pain I've ever experienced in 76 years. Off them for 9 months, but went in for an ultrasound (HerScan, at my own expense) on the first anniversary of my lumpectomy (1/27/2023) and had to secure an oncologist in Texas where we winter. Hadsha diagnostic mammogram, but declined having another stereotactic biopsy (which would have been my 3rd) because the first one was so bad that it didn't heal for 7 months. (The second one was done with a different instrument like a curly pig's tail and didn't hurt much). We gathered all my mammograms from years back and it showed no change in the calcification that showed up in the "good" left breast. I had had calcification on the right in 2018 and 3 years later it was the 11 mm. tumor, caught early via mammogram. Good margins, 95% estrogen positive. No spread. I am concerned that the calcification on the left might turn into a tumor in that amount of time, also, but i am ALSO concerned that digging around on the right side may have caused the tumor to form in the first place. Had 33 radiation sessions, but no oncotype or ki67 because my Illinois physician was a complete jerk. I now doctor 3 hours away in Iowa City and, when here, in Austin. Current Texas oncologist talked me into Tamoxifen, which I began on April 23, but I told him I would only do 10 mg. (and I took it every other day). Side effects with that low dosage were tolerable, but it still felt as though everything below my waist was going South. And you have to pee all the time. I was told I needed to step up my dosage to 20 mg. daily on June 23 and did but I couldn't stand it past Aug. 30 when I had blood work. The blood work in March was good. Ten things had gone bad by August on Tamoxifen. I also had non-stop UTIs, EXTREME exhaustion (could only be up 3 hours) and the same urgency to urinate, which wasn't always genuine. I quit taking the Tamoxifen Aug. 30 and have not taken any adjuvant therapy since then. I would ask if anyone knows what the very best method to "track" and keep on top of any recurrence might be? I know mammograms, of course (the last one broke open the skin under my "good" left breast in a 6" x 3" gash) and possibly MRIs, if my doctor will order one, but is there another test of choice that would help me exercise Eternal Vigilance? I was in a MOST knee study for TWENTY YEARS (1997-2020) that tracked deterioration of one's joints, especially injured ones. Had frequent MRIs of my left knee (bicycle injury) and other damaged joints (elbow from volleyball) and excruciating pain when on Anastrozole. Two oncologists in Texas have said I should never have been put on A.I.s in the first place, and I definitely agree. I asked for an oncotype for 17 months, but it took my Texas doctor to get it. It is 29, not a good score. So, I'm concerned about the fact that my original doctor just dismissed my inquiries about an oncotype, saying, "You don't need one" and walking out. He also dismissed my surgeon's suggestion of a ki67 saying, "I won't order that for you. You'll have to get someone else" (and walked out). I did, and I don't go to that jerk any more.

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@einnoc

Took Anastrozole for 7 months. Side effects: dry skin, dry eyes to the point of blurry vision; insomnia for weeks; excruciating back pain, when I had never had back pain previously; teariness; mood swings; brain fog; vivid violent nightmares and on 9/15/2022 my left knee blew out (meniscus tear) and put me in a wheelchair for 6 months. Had X-rays on 9/19; 9/21; 9/28 and 11/15. No break. Could not walk at all. Had to go to a knee joint pain clinic in Oak Brook (IL) and have injections from a board-certified physician of 32 ml of an anti-inflammatory and 6 ml of Durolane. Tramadol (50 mg.) for pain. Was in a wheelchair at my first post-operative mammogram on Oct. 3, 2022. Quit the A.I. drugs, which had given me the most pain I've ever experienced in 76 years. Off them for 9 months, but went in for an ultrasound (HerScan, at my own expense) on the first anniversary of my lumpectomy (1/27/2023) and had to secure an oncologist in Texas where we winter. Hadsha diagnostic mammogram, but declined having another stereotactic biopsy (which would have been my 3rd) because the first one was so bad that it didn't heal for 7 months. (The second one was done with a different instrument like a curly pig's tail and didn't hurt much). We gathered all my mammograms from years back and it showed no change in the calcification that showed up in the "good" left breast. I had had calcification on the right in 2018 and 3 years later it was the 11 mm. tumor, caught early via mammogram. Good margins, 95% estrogen positive. No spread. I am concerned that the calcification on the left might turn into a tumor in that amount of time, also, but i am ALSO concerned that digging around on the right side may have caused the tumor to form in the first place. Had 33 radiation sessions, but no oncotype or ki67 because my Illinois physician was a complete jerk. I now doctor 3 hours away in Iowa City and, when here, in Austin. Current Texas oncologist talked me into Tamoxifen, which I began on April 23, but I told him I would only do 10 mg. (and I took it every other day). Side effects with that low dosage were tolerable, but it still felt as though everything below my waist was going South. And you have to pee all the time. I was told I needed to step up my dosage to 20 mg. daily on June 23 and did but I couldn't stand it past Aug. 30 when I had blood work. The blood work in March was good. Ten things had gone bad by August on Tamoxifen. I also had non-stop UTIs, EXTREME exhaustion (could only be up 3 hours) and the same urgency to urinate, which wasn't always genuine. I quit taking the Tamoxifen Aug. 30 and have not taken any adjuvant therapy since then. I would ask if anyone knows what the very best method to "track" and keep on top of any recurrence might be? I know mammograms, of course (the last one broke open the skin under my "good" left breast in a 6" x 3" gash) and possibly MRIs, if my doctor will order one, but is there another test of choice that would help me exercise Eternal Vigilance? I was in a MOST knee study for TWENTY YEARS (1997-2020) that tracked deterioration of one's joints, especially injured ones. Had frequent MRIs of my left knee (bicycle injury) and other damaged joints (elbow from volleyball) and excruciating pain when on Anastrozole. Two oncologists in Texas have said I should never have been put on A.I.s in the first place, and I definitely agree. I asked for an oncotype for 17 months, but it took my Texas doctor to get it. It is 29, not a good score. So, I'm concerned about the fact that my original doctor just dismissed my inquiries about an oncotype, saying, "You don't need one" and walking out. He also dismissed my surgeon's suggestion of a ki67 saying, "I won't order that for you. You'll have to get someone else" (and walked out). I did, and I don't go to that jerk any more.

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Dear einnoc (@einnoc):

I am so sorry for all your sufferings:(( Thanks for sharing your journey so far to help us!

Could you please let me know what is a ki67 test, please? What is the normal range - if there's one - of this ki67 test?

Thanks! Wishing you better days to come on this journey ahead!

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@lifetraveler

Dear einnoc (@einnoc):

I am so sorry for all your sufferings:(( Thanks for sharing your journey so far to help us!

Could you please let me know what is a ki67 test, please? What is the normal range - if there's one - of this ki67 test?

Thanks! Wishing you better days to come on this journey ahead!

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KI 67 is a measure of cell proliferation. 0-10 is low, 10-20 moderate and above 20 is high. it is part of the Oncotyping and should be listed on the ONCOTYPE print out which assesses risk recurrence on Er/Pr + HER2- breast cancer tumors. Removed breast tissue samples are available where surgery is performed and pathology assessed.

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@anjalima

KI 67 is a measure of cell proliferation. 0-10 is low, 10-20 moderate and above 20 is high. it is part of the Oncotyping and should be listed on the ONCOTYPE print out which assesses risk recurrence on Er/Pr + HER2- breast cancer tumors. Removed breast tissue samples are available where surgery is performed and pathology assessed.

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Hi! anjalima (@anjalima):

Thanks for reply! I am embrassed to admit that I have my Oncotype report print out in my hand, yet I can not find the value of my ki-67 anywhere on it:( My Oncotype DX Breast Recurrence Score Report had been provided by Genomic Health and it gave me the recurrence score to determine whether Chemo therapy is necessary or not. Perhaps I miss it some where?

Thanks again for your explanation!

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@lifetraveler

Hi! anjalima (@anjalima):

Thanks for reply! I am embrassed to admit that I have my Oncotype report print out in my hand, yet I can not find the value of my ki-67 anywhere on it:( My Oncotype DX Breast Recurrence Score Report had been provided by Genomic Health and it gave me the recurrence score to determine whether Chemo therapy is necessary or not. Perhaps I miss it some where?

Thanks again for your explanation!

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I’ll pull mine out later today and check where I saw it. It’s not available to me right now.

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@anjalima

I’ll pull mine out later today and check where I saw it. It’s not available to me right now.

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Also you can call them .

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@lifetraveler

Hi! anjalima (@anjalima):

Thanks for reply! I am embrassed to admit that I have my Oncotype report print out in my hand, yet I can not find the value of my ki-67 anywhere on it:( My Oncotype DX Breast Recurrence Score Report had been provided by Genomic Health and it gave me the recurrence score to determine whether Chemo therapy is necessary or not. Perhaps I miss it some where?

Thanks again for your explanation!

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My Ki-67 was listed in the surgery and biopsy pathology reports.

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