Concerned about the side effects of anastrozole

Posted by tinalove @tinalove, Jan 31, 2016

I completed all treatments for breast cancer but now I am supposed to take hormone blocker, named anastrozole. im concerned about the side effects. Has anyone here taken it and did anyone have hair loss?

@cindylb

samy – Once you're settled in with your other treatments, give the Arimidex a try. You could be the person who has few if any side effects and yet you'll get the upside of lowering your recurrence. You don't know until you try. I wasn't able to use any of them BUT I'm allergic to many things (antibiotics is a big one) and I can't take ibuprofen anymore either (bleeding)……so I'm just not a 'pill girl'. I take no prescription meds at all and my doctors look terrified when they have to give me one, ha ha! Give them a try because you can always quit or change meds if you're having problems.
FYI – I was Stage 1 lobular on my right and LCIS on my left—-we're like twins (only opposite?).
Hugs

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In a message subsequent to this, you indicated that you decided not to take the AI drug(s). Have you ever taken them, i.e., did you stop or just never start? The decision I’m grappling with is taking this drug at all. As I said, I’m 69 in a month – is Stage 1 survival going to be that much different with or without this drug? And is poor quality of life for a huge % of the rest of my life worth it? I realize I’m “only” 69, but in 5 years that’s “only” 74 – it just doesn’t seem worth it and I’d be better off taking my chances with just radiation. I know nobody can say take it, or don’t take it … it’s up to me. But, it’s a horrible choice. I’d still be living with the unknown of “possibly” getting cancer again, whether I subject myself to 5 years of this debilitating drug or not.

Liked by cindylb

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samy – VERY good questions. I am on my second AI (Aromosin) and starting the feel the aches and pains (not as bad as Femura), but still. Have you asked your oncologist if you could go on Tamoxifen? Yes, I know this is a first generation drug, and primarily for pre-menopausal women, HOWEVER, i know postmenapausal women who used it and did not experience side effects. I would like to the reoccurence rates for Tamoxifen vs the new AI drugs?

Liked by samy

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@samy

Hello. New member of the club, here. Stage 1 lobular on the left, LCIS right. Lumpectomy surgery couple weeks ago. The surgeon says radiation for a month and Arimidex for 5 years. I’m 68 and wondering if I should just do the radiation and screw the hormone stuff. Former smoker with mild COPD, currently on BP and cholesterol meds that are doing fine. The internet research of Arimidex is the reason I’m here. … and … frankly, you’ve all terrified me. Quality of life on this drug sounds like an absolute nightmare.

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Welcome to Connect.

I think the decision to take an AI for 3-5 years is one of the harder decisions of dealing with Breast Cancer. I took Arimidex for 6 months prior to surgery as part of research study. As a result, I know the Arimidex did what it was suppose to do based on test results during diagnosis and then again after 3 months of Arimidex. With that being said, it came with side effects, for me it was depression.

I stopped taking after surgery, then did chemo and radiation. I have had multiple discussion with oncologist about AIs and have agreed to try Letrozole for a month and then will meet with oncologist again.

I am willing to try it, but if side effects are to severe, I will re-evaluate.

Everyone has different reactions to meds. And you hear more from those who have negative side effects then those with no problems. My sister had breast cancer and had no problems with AI.

Good luck
Laurie

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Hi Laurie, I will be interested in your reaction to Letrozole. I took it for 6 weeks and had terrible shooting pains in my knees and legs. I exercise every day and it was very difficult. The pain also woke me up at night. Now I am on aromosin for 3 weeks and trying that one out.

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@samy

In a message subsequent to this, you indicated that you decided not to take the AI drug(s). Have you ever taken them, i.e., did you stop or just never start? The decision I’m grappling with is taking this drug at all. As I said, I’m 69 in a month – is Stage 1 survival going to be that much different with or without this drug? And is poor quality of life for a huge % of the rest of my life worth it? I realize I’m “only” 69, but in 5 years that’s “only” 74 – it just doesn’t seem worth it and I’d be better off taking my chances with just radiation. I know nobody can say take it, or don’t take it … it’s up to me. But, it’s a horrible choice. I’d still be living with the unknown of “possibly” getting cancer again, whether I subject myself to 5 years of this debilitating drug or not.

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Hello Samy
I tried Tamoxifen when I was first diagnosed (when I was pre menopausal) and my blood pressure, which is normally low shot up to really high levels and I had constant headaches. They took me off of that and 2 years later I had Stage 1 invasive cancer. Would the tamoxifen have stopped that? I'll never know. Following bi lateral mastectomy for Stage 1 invasive lobular I first tried Letrozole. I had severe depression (which is what was the worst for me), pain in my hands and wrists and knees almost immediately. I was on it two weeks when I developed Shingles (at age 59) and was quite ill from that. The doctors and I agreed that I should stop Letrozole and try Arimidex, which I did. Arimidex was just as bad, perhaps a little worse and after 3 weeks on it (including trying every other day) I had the usual symptoms and blood in my stools. At that point the doctors said I was 'lower risk' and the drugs were causing side effects that could be severe. Once I stopped the drugs I had no joint pain, no depression (except for the usual……I have cancer and this sucks) and my health improved dramatically.
At my last 6 month follow up (with a new oncologist) I brought up using the drugs again and he said, you are low risk and the side effects, for you, are not worth it. If you get a recurrence you will have to take them but for now, 3 1/2 years in, I am not using them.
I really didn't want to take the drugs because I'd read up on the side effects but I was willing to give them a try and see how I reacted because I sure don't want cancer. Many people will have side effects but you won't hear much from those who don't have side effects, they simply move on, so it's hard to judge. I am 61 now, so I was 56 when first diagnosed (5 years ago) and am 3 1/2 years out from the surgery.
I will say this……………it's overwhelming and physically and emotionally draining with breast cancer treatment. There is no rush to start the drugs I know of (?) If you are at that point and want to wait 3 months or so to regain your strength, ask your doctor if that would be ok? That way you can start at your strongest point and judge the pills then? I went right into the pills while I was still recovering from surgery and lymphedema and all sorts of stuff. That might have taxed my body as well.

When I was diagnosed, had surgery, etc……..it all happened pretty fast. I didn't have much time to process so I was beat up really. I did consider my quality of life because I didn't want to feel sick for another 5 years because I hadn't felt sick at all prior to the diagnosis (I think that's often true of all of us). I was also concerned about having side effects like bone loss and then having to take pills for that, having a hear condition caused by the pills and then having to take pills for that, etc….it can be a cascade of pills and unfortunately I think that's how a lot of doctors approach this. Remember, an oncologist is there to treat and cure cancer and not all of them see the bigger picture of treating or curing the cancer and leaving the patient with osteoporosis, heart disease, etc….. Some do, but not all.
This is NOT an easy decision……….see if your doctors will allow you to process this for a while or give the pills a chance and we'll all keep our fingers crossed that you're one of the lucky ones with few if any side effects!!
Hugs

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@cindylb

Hello Samy
I tried Tamoxifen when I was first diagnosed (when I was pre menopausal) and my blood pressure, which is normally low shot up to really high levels and I had constant headaches. They took me off of that and 2 years later I had Stage 1 invasive cancer. Would the tamoxifen have stopped that? I'll never know. Following bi lateral mastectomy for Stage 1 invasive lobular I first tried Letrozole. I had severe depression (which is what was the worst for me), pain in my hands and wrists and knees almost immediately. I was on it two weeks when I developed Shingles (at age 59) and was quite ill from that. The doctors and I agreed that I should stop Letrozole and try Arimidex, which I did. Arimidex was just as bad, perhaps a little worse and after 3 weeks on it (including trying every other day) I had the usual symptoms and blood in my stools. At that point the doctors said I was 'lower risk' and the drugs were causing side effects that could be severe. Once I stopped the drugs I had no joint pain, no depression (except for the usual……I have cancer and this sucks) and my health improved dramatically.
At my last 6 month follow up (with a new oncologist) I brought up using the drugs again and he said, you are low risk and the side effects, for you, are not worth it. If you get a recurrence you will have to take them but for now, 3 1/2 years in, I am not using them.
I really didn't want to take the drugs because I'd read up on the side effects but I was willing to give them a try and see how I reacted because I sure don't want cancer. Many people will have side effects but you won't hear much from those who don't have side effects, they simply move on, so it's hard to judge. I am 61 now, so I was 56 when first diagnosed (5 years ago) and am 3 1/2 years out from the surgery.
I will say this……………it's overwhelming and physically and emotionally draining with breast cancer treatment. There is no rush to start the drugs I know of (?) If you are at that point and want to wait 3 months or so to regain your strength, ask your doctor if that would be ok? That way you can start at your strongest point and judge the pills then? I went right into the pills while I was still recovering from surgery and lymphedema and all sorts of stuff. That might have taxed my body as well.

When I was diagnosed, had surgery, etc……..it all happened pretty fast. I didn't have much time to process so I was beat up really. I did consider my quality of life because I didn't want to feel sick for another 5 years because I hadn't felt sick at all prior to the diagnosis (I think that's often true of all of us). I was also concerned about having side effects like bone loss and then having to take pills for that, having a hear condition caused by the pills and then having to take pills for that, etc….it can be a cascade of pills and unfortunately I think that's how a lot of doctors approach this. Remember, an oncologist is there to treat and cure cancer and not all of them see the bigger picture of treating or curing the cancer and leaving the patient with osteoporosis, heart disease, etc….. Some do, but not all.
This is NOT an easy decision……….see if your doctors will allow you to process this for a while or give the pills a chance and we'll all keep our fingers crossed that you're one of the lucky ones with few if any side effects!!
Hugs

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@cindylb– Thank you, Cindy. Beautifully stated.

Liked by kathyomaha55

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@gwinter

How do you convince your doctor or doctors to run the blood tests or mri!
I am so sick of the scare tactics!
Well, in the beginning your chances of recurrence was 12%. Now with radiation it is 7-10% having a hysterectomy it is 3 to 9 %. But take the meds and you go to 3-5% recurrence…
So, I followed orders except for the meds side effects were way too much.
So next appt doctor gets pissy and says,"Well, now you are at 20% because you won't take your meds and the cancer will return in your bones or lungs get ready!"
We see a new oncologist Monday! Bad thing there: they are good friends! OMG

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It is vital you trust your doctor – I would not hesitate to find a new one if my oncologist said that to me. Hang in there. Guess they are not good friends any longer!

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@cindylb

Hello Samy
I tried Tamoxifen when I was first diagnosed (when I was pre menopausal) and my blood pressure, which is normally low shot up to really high levels and I had constant headaches. They took me off of that and 2 years later I had Stage 1 invasive cancer. Would the tamoxifen have stopped that? I'll never know. Following bi lateral mastectomy for Stage 1 invasive lobular I first tried Letrozole. I had severe depression (which is what was the worst for me), pain in my hands and wrists and knees almost immediately. I was on it two weeks when I developed Shingles (at age 59) and was quite ill from that. The doctors and I agreed that I should stop Letrozole and try Arimidex, which I did. Arimidex was just as bad, perhaps a little worse and after 3 weeks on it (including trying every other day) I had the usual symptoms and blood in my stools. At that point the doctors said I was 'lower risk' and the drugs were causing side effects that could be severe. Once I stopped the drugs I had no joint pain, no depression (except for the usual……I have cancer and this sucks) and my health improved dramatically.
At my last 6 month follow up (with a new oncologist) I brought up using the drugs again and he said, you are low risk and the side effects, for you, are not worth it. If you get a recurrence you will have to take them but for now, 3 1/2 years in, I am not using them.
I really didn't want to take the drugs because I'd read up on the side effects but I was willing to give them a try and see how I reacted because I sure don't want cancer. Many people will have side effects but you won't hear much from those who don't have side effects, they simply move on, so it's hard to judge. I am 61 now, so I was 56 when first diagnosed (5 years ago) and am 3 1/2 years out from the surgery.
I will say this……………it's overwhelming and physically and emotionally draining with breast cancer treatment. There is no rush to start the drugs I know of (?) If you are at that point and want to wait 3 months or so to regain your strength, ask your doctor if that would be ok? That way you can start at your strongest point and judge the pills then? I went right into the pills while I was still recovering from surgery and lymphedema and all sorts of stuff. That might have taxed my body as well.

When I was diagnosed, had surgery, etc……..it all happened pretty fast. I didn't have much time to process so I was beat up really. I did consider my quality of life because I didn't want to feel sick for another 5 years because I hadn't felt sick at all prior to the diagnosis (I think that's often true of all of us). I was also concerned about having side effects like bone loss and then having to take pills for that, having a hear condition caused by the pills and then having to take pills for that, etc….it can be a cascade of pills and unfortunately I think that's how a lot of doctors approach this. Remember, an oncologist is there to treat and cure cancer and not all of them see the bigger picture of treating or curing the cancer and leaving the patient with osteoporosis, heart disease, etc….. Some do, but not all.
This is NOT an easy decision……….see if your doctors will allow you to process this for a while or give the pills a chance and we'll all keep our fingers crossed that you're one of the lucky ones with few if any side effects!!
Hugs

Jump to this post

Thank you for the response.

I have pored over forums and websites and cannot find an answer to a really simple question: Is stage 1 survival significantly different with this drug, any AI drug, for someone pushing 70? If there is no significant difference in mortality rates, I don’t want to take it.

If anyone reads or hears about a study or something specific, I’d REALLY appreciate the link.

Liked by cindylb

REPLY
@francine6829

samy – VERY good questions. I am on my second AI (Aromosin) and starting the feel the aches and pains (not as bad as Femura), but still. Have you asked your oncologist if you could go on Tamoxifen? Yes, I know this is a first generation drug, and primarily for pre-menopausal women, HOWEVER, i know postmenapausal women who used it and did not experience side effects. I would like to the reoccurence rates for Tamoxifen vs the new AI drugs?

Jump to this post

No, I haven’t gone beyond surgery. No radiation or hormones yet. They just gave me all the appointments, phone numbers to make more appointments to get the ball rolling with this nightmare. Just trying to figure out what to do.

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@roch

Welcome to Connect.

I think the decision to take an AI for 3-5 years is one of the harder decisions of dealing with Breast Cancer. I took Arimidex for 6 months prior to surgery as part of research study. As a result, I know the Arimidex did what it was suppose to do based on test results during diagnosis and then again after 3 months of Arimidex. With that being said, it came with side effects, for me it was depression.

I stopped taking after surgery, then did chemo and radiation. I have had multiple discussion with oncologist about AIs and have agreed to try Letrozole for a month and then will meet with oncologist again.

I am willing to try it, but if side effects are to severe, I will re-evaluate.

Everyone has different reactions to meds. And you hear more from those who have negative side effects then those with no problems. My sister had breast cancer and had no problems with AI.

Good luck
Laurie

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Thanks Laurie. I appreciate the response.

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Hello – I was diagnosed with Atypical Ductal Hyperplasia (posted a follow-up on the other thread, but see it must have gotten lost in cyber land). I had a stereotactic biopsy and then a surgical biopsy. The pathology came back clear for DCIS. In fact, there were no ADH cells present either which meant those cells were removed during the stereotactic procedure and left me shaking my head over the stress and recovery from the surgery.

So now I am 59 and faced with taking Anastrozole to try and prevent cancer. Due to family history and the ADH, I fall into the high risk category with >30% lifetime risk of developing breast cancer. I won’t take Tomoxifen because I have a family history of stroke. I’m left with Anastrozole as an option but I already have degenerative discs, arthritis, (controlled) hypertension and occasional abnormal liver enzymes. I DON’T WANT TO TAKE THIS DRUG. I’m supposed to start taking it tonight but then realized my oncologist never took a baseline blood for the liver enzymes so I will hold off until I speak w/ her (it’s in her clinical notes but a fairly big over sight if you ask me).I have a 30 day supply and try very hard to just look at this as a “trial”, but it is scary. I don’t have cancer but I have to fill my body with a drug that perhaps will prevent (only) an estrogen fed future cancer, but then maybe I’m taking this all for nothing because I could fall in the percentage of people who never develop cancer (my mother didn’t, but my sister, material aunt and cousin did).

I’m angry. My husband is scared that I won’t feel well. I’m scared that if I don’t take the medication I will regret it. I’m scared that if I do take the medication I will regret it. And though I asked a couple of times, my doctor won’t check my estrogen levels either. I am somewhat bothered by the fact that the FDA has approved the use of this drug to treat cancer, but has not done so for the use of a CPA (chemoprevention agent) for high risk women. I know that, with the support of clinical studies, doctors use drugs for off-label purposes, but it bothers me. Anyway, now I know I am rambling…I just feel that it is all a big crap shoot.

Best wishes to all of you that are dealing with so much…there are some days I feel so overwhelmed by it all it takes my breath away.

Liked by cindylb, samy

REPLY
@samy

Thank you for the response.

I have pored over forums and websites and cannot find an answer to a really simple question: Is stage 1 survival significantly different with this drug, any AI drug, for someone pushing 70? If there is no significant difference in mortality rates, I don’t want to take it.

If anyone reads or hears about a study or something specific, I’d REALLY appreciate the link.

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https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3874410/
Samy – You got me curious about this……….I'm not sure the link above will work. I'm not very good at links and such but this is an article on the NCBI-NIH (National Institutes of Health) website.
I looked at several articles. They are written in medical language and it takes a while to plow through them but…this one references 'older breast cancer patients' and treatment options, including AI's. There are several studies listed on the difference between Lobular and Ductal and AI effectiveness and 'the older' patient ………I think we're all 'older', ha ha….but it does address some of our concerns.
If you can't get to the article, Google or Websearch, effectiveness of AI's in early stage or Stage 1 cancer. I found lots of studies.
The upshot I got was this………..the AI's work but side effects and compliance by older patients are a strong consideration and Lobular really is different than Ductal and is just now being treated as such.
Hugs………..

REPLY
@monical

Hello – I was diagnosed with Atypical Ductal Hyperplasia (posted a follow-up on the other thread, but see it must have gotten lost in cyber land). I had a stereotactic biopsy and then a surgical biopsy. The pathology came back clear for DCIS. In fact, there were no ADH cells present either which meant those cells were removed during the stereotactic procedure and left me shaking my head over the stress and recovery from the surgery.

So now I am 59 and faced with taking Anastrozole to try and prevent cancer. Due to family history and the ADH, I fall into the high risk category with >30% lifetime risk of developing breast cancer. I won’t take Tomoxifen because I have a family history of stroke. I’m left with Anastrozole as an option but I already have degenerative discs, arthritis, (controlled) hypertension and occasional abnormal liver enzymes. I DON’T WANT TO TAKE THIS DRUG. I’m supposed to start taking it tonight but then realized my oncologist never took a baseline blood for the liver enzymes so I will hold off until I speak w/ her (it’s in her clinical notes but a fairly big over sight if you ask me).I have a 30 day supply and try very hard to just look at this as a “trial”, but it is scary. I don’t have cancer but I have to fill my body with a drug that perhaps will prevent (only) an estrogen fed future cancer, but then maybe I’m taking this all for nothing because I could fall in the percentage of people who never develop cancer (my mother didn’t, but my sister, material aunt and cousin did).

I’m angry. My husband is scared that I won’t feel well. I’m scared that if I don’t take the medication I will regret it. I’m scared that if I do take the medication I will regret it. And though I asked a couple of times, my doctor won’t check my estrogen levels either. I am somewhat bothered by the fact that the FDA has approved the use of this drug to treat cancer, but has not done so for the use of a CPA (chemoprevention agent) for high risk women. I know that, with the support of clinical studies, doctors use drugs for off-label purposes, but it bothers me. Anyway, now I know I am rambling…I just feel that it is all a big crap shoot.

Best wishes to all of you that are dealing with so much…there are some days I feel so overwhelmed by it all it takes my breath away.

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monical
I first had Stage 0 LCIS (Lobular). Had the same biopsy and surgery and two years later I had invasive Stage 1 Lobular Cancer. I was unable to tolerate Tamoxifen and have been unable to tolerate the AI's as well (post mastectomy). I felt awful and I had to pass on the drugs. Did I get Stage 1 because I couldn't/didn't take the drugs? I'll never know …..BUT, I did get very regular screenings and continue to do so (even without breasts) and that saved me. It turned into cancer for me but it was caught very early (luckily). If you choose not to use the drugs, be vigilant about mammograms, ultrasounds and MRI's….don't just settle on a mammogram however. My cancer was NEVER A LUMP…it was originally microcalcifications that tipped them off to the LCIS and it was a painful cyst I demanded they ultrasound that showed something suspicious. The MRI showed the invasive cancer. Up to the day of my surgery to remove my breasts, no lump or abnormality showed up on a mammogram. (But this is lobular cancer and it's tricky that way, grows in lines often vs lumps).
If you try the drugs, you may be pleasantly surprised and have no serious side effect! If you feel truly awful (which I did), you can quit taking it and the issues after taking it small time go away very quickly with no lasting ill effects.
Since they didn't actually find more cancer cells in your lumpectomy………perhaps watchful waiting is a good option for you.
Hugs

Liked by elizm

REPLY
@cindylb

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3874410/
Samy – You got me curious about this……….I'm not sure the link above will work. I'm not very good at links and such but this is an article on the NCBI-NIH (National Institutes of Health) website.
I looked at several articles. They are written in medical language and it takes a while to plow through them but…this one references 'older breast cancer patients' and treatment options, including AI's. There are several studies listed on the difference between Lobular and Ductal and AI effectiveness and 'the older' patient ………I think we're all 'older', ha ha….but it does address some of our concerns.
If you can't get to the article, Google or Websearch, effectiveness of AI's in early stage or Stage 1 cancer. I found lots of studies.
The upshot I got was this………..the AI's work but side effects and compliance by older patients are a strong consideration and Lobular really is different than Ductal and is just now being treated as such.
Hugs………..

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THANK you for that article. It’s the closest to answering my question. It would seem that radiation OR radiation+AI drug doesn’t produce a significant difference mortality. Although this is only one person’s opinion, it doesn’t surprise me. I’ll read it several times, to understand as well as I can … and keep searching for more ino. Bottom line is, I guess, I need some serious convincing that this poisonous drug will be worth it for someone my age…so far, I am NOT convinced. The “lump” I had was never felt, by me or doctor, mammogram found it and subsequent tests confirmed. 1.6cm very deep.

Liked by cindylb

REPLY
@samy

THANK you for that article. It’s the closest to answering my question. It would seem that radiation OR radiation+AI drug doesn’t produce a significant difference mortality. Although this is only one person’s opinion, it doesn’t surprise me. I’ll read it several times, to understand as well as I can … and keep searching for more ino. Bottom line is, I guess, I need some serious convincing that this poisonous drug will be worth it for someone my age…so far, I am NOT convinced. The “lump” I had was never felt, by me or doctor, mammogram found it and subsequent tests confirmed. 1.6cm very deep.

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samy…..I hear you on this. I felt and feel much the same way. The results are conclusive that the drugs help with recurrence but not for everyone. It's a mixed bag…….and a tough decision. Keep researching and your answer will come. The good news is, I guess, the drugs are always there for us.
Hugs

Liked by elizm

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