Afinitor/Aromasin
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Hi everyone. I haven't posted for quite awhile. The only way I can handle cancer is denial, mostly because I don' feel bad. Very fortunate I know. I started A/A on sept 9th at 5mg. I just came from Zeloda which halted progression for 10mos. Didn't shrink anything.
I'd like to say more but my arm is in a cast and typing is difficult.(broke both long arm bones righ by wrist)
I'll be checking in alot more often. HUGS
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snooky1954
How awful to break your arm/wrist. Best wishes on AA. I hope they got you the steroid mouth wash.
I was hoping to get longer but, I got 7 months of slowed progression on A/Faslodex. Going into a trial now for a new estrogen blocker.
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Thank You Dee, I've bee on AA for 2 weeks and no side effects. Had no side effects on other hormonals and they didn't work.
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I feel like I’m going through all the side effects too. Acne in my face and scalp. Leaves big flakes of skin.
The worst is my bp being high and so is my sugar. I took metformin with piqray and didn’t like how it felt.
Any suggestions to lower bp naturally? Have sent in a weeks worth of bp numbers and even called the center. No reply. My head hurts. My ears buzz. My DD says I’m mean.
If anyone changed to a lower dose did the bp drop too?
Thanks
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Hi everyone. Is the A/A tx known for causing low hemoglobin levels? For the last two months, mine have been 10.5. I know that isn't too low but all my other TX's only took them to high 11's. Should I worry?
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Hi all...I am about to join this group....can anyone tell me what to expect as far as most common side effects???
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NicoleRod- I haven’t been on AA for a year now- but, this thread is a little slow so I thought I jump In until you hear from some current users. I was given a steroid mouthwash to use prophylactically 4 times per day for 8 weeks to prevent mouth sores and it worked very well for me - seems to be pretty standard - a study done at UCSF by hope Rugo. I started at 10 mg and stayed there- my TMs dropped rapidly and it worked for 10 months as a second line therapy after I/F. My sugars did rise, but, never got abnormal, my cholesterol also rose- abnormal but, not a dangerous level and I did not start statins. Initially I had some fatigue, which seems to happen to me with each new med. but, it is the easiest medicine I have tried. Anemia resolved, ANCs were good enough ( not so on Ibrance) leg cramps went away, hair became thick and luscious and neuropathy improved.
This drug seems to be difficult for diabetics though. good luck NicoleRod!
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Nichole I am on this medicine. The Onc started me out at at 5mg for first three months and at scans it showed some shrinkage. He then upped the dose to 10mg but when the side effects got too bad, he lowered me back to 5mg. He said your a trooper for going up so high most of my patients won't. First 3/4 months really were not bad.
I hate to continue with this since NKB gave it a good report but I'm sure you want the good with the bad, so....Every since day one my hemoglobin has been dropping. My blood held strong during all other TX's (high11's) but now after 5 1/2 months it's down to 9.2. It' lower with every blood draw. Onc said he'd let it go to 8 before he'll step in.
My TM's are rising, sugars are dropping, cholesterol unchanged. My liver enzymes are rising. Please read the drug insert, it mentions trouble with lungs and liver. ( I think liver).
In the last three weeks, it's like I'm on a different drug! Extreme fatigue, stomach always feels upset although no vomiting, head feels like it's exploding, confusion, (can't drive, anymore) the worse is the intense pain in ankles, knees, pelvis, lower back the muscles in my legs ache so dang bad 24/7. I can't stay in any position for too long because of pain. Can't sleep more than 4/5 hours wake up in pain.
Sounds like I'm toxic right? Well I way upped the dose of water intake and no help. I don't know whats going on.
Oh, no mouth sore ever, and no constipation. I sure don't mean to scare you as your experience could be like NKB, I pray it is for you.
Scans March 1 and doc visit on Mar 5, I don't care if it is syll working this is no life. Easiest TX I've had was Taxol and it worked fast.
Oh, chills, I shake constantly like I'm freezing God Bless, Nichloe
As far as I know, I'm the only person in thid "group"
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Thanks for the heads up Snooky hope you feel better soon.
I am probably gonna have all the side effects you do...since I am paying the price now with side effects from the Y90 (NO one else got these SE's but me).....
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Snooky1954- I am so sorry- that sounds awful! My hemoglobin got better from the lows of Ibrance where it was 9 and on Afinitor it was 11.6! You did remind me that my feet/ankles did get swollen and I had to elevate them- they looked a little Flintstone ish, but, did not hurt. I definitely did not have any liver issues etc. I think that it is so personal- hope for the best!
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NKB, Thanks for encouragement. Scans on Mar 1 so we'll find out if it's even still working
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snooky- I hope it is still working
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I was taken off A/A three weeks ago after a pet scan showed metastise to my spine. I’m now back on xeloda and theyapproved me for Nerlynx. My legs have become so weak I can’t get it or out of a bath. Anyone else have this?
Thanks!
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Eljaywest - I am sorry that is happening to you. Maybe try the Xeloda thread. https://community.breastcancer.org/forum/8/topics/... However, I was on Xeloda and that did not seem to be a common side effect mentioned, but maybe your dosage is too high. I am not sure about Nerlynx. You could also head to the bone mets thread. I hope it gets better right away!
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thanks Kar pc I’ll try that. I did really well on the A/A for almost three years but my TMs kept going up.
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I have been hearing so many horror stories now about this drug I am getting so worried to take it. I am hearing about it making food taste disgusting, getting a dangerous cough, horrible mouth sores, and low low low neutrophils....
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Nicole - Please don’t work yourself up too much over this treatment. Everyone’s story is NOT your story. Everyone will react differently than everyone else on these meds. Unfortunately, they all have some side effects. Some people will have them, some won’t, some will have them mild, for some it will be intolerable. We don’t have many choices except to try and see if we can tolerate the drugs or combos available to us. Hopefully we can and hopefully the drug will help us for some time. That’s what we hope for, some time of stability and peace. All we can do is try and give the drugs a chance. I would love for us all to be cured and pray for that every day. But until then, we are left with the drugs that have some potential to help fight back the disease.
When I first started taking VERZENIO, I was so worried about the G.I. effects because I have G.I. issues anyway. The diarrhea was absolutely awful. I didn’t think I’d be able to stay on the drug past the first couple weeks. But with a dose reduction and trying some out-of-the-box ways to deal with diarrhea, I’ve been on it for quite some time and I’m actually able to tolerate it pretty well without diarrhea now. It was not fun figuring it out, but I managed to get here and with good disease control (before this new finding) Have faith!
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Thanks Hope
I needed that.0 -
nichole, I am off A/A. Like all other treatments I've been on, it worked three months and then stopped. (except Taxol) Been on 5 Txs in 3 yrs.
SInce 2/22 I've been unbearable pain in my ankles, knees, pelvic area and the muscles in my legs. I rate the pain a 8 0r 9 and thought it would go away once I stopped A/A but it did not.
My cancer has been on the outside of my breast for 3 yrs, about the size of a half a dollar, no ulcerating, weeping etc. Right about the time all my pains started, the breast started bleeding and has a hole in it. And it's growing massively. There are also red stripes over my chest and under my chest. The whole breast is almost covered wither cancer and the itching is intense. I've had fungal infections off and on for over 40 yrs and I think that since my red bl count went down to 9.3 that is what this is. Sometimes it bleed and sometimes it just weeps out a yellow substance.
Saw nurse practioner on Fr. cause my Onc was out. She prescribed a 12mg Fentanyl patch. But it's not working too good. I'm also on hydrocdon .
She got me in to see m'y ONc this morning. She said he will have a plan ready. I'm more than a bit worried. Sorry I layed this all on you but I have no where to belong here. A/A has not been active at all since I've been here and I have no place to vent.
IMPORANT I am not blaming A/A for any of this. I pray you have a very easy time on it and it works well for you..
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Snooky yea the Fentanyl patch at 12 mg is what I had I took it off it did nothing...I would tell them and maybe they can give you the next highest at 25mg.
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Nichole, I read on drugs.com, that there are several manufacturers of Fen. and some of them just don't work. I have to go back and find the list again and see if my pharmacist can order the one that they, the consumers rate highly.
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Hrmmm that is interesting to know!
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Wanna talk fate.....
I just got a call the Afinitor is on back order and they don't know for how long....I put in a message to my MO asking if we should do verzenio instead....
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Sent you a pm
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Hi Nicole. Taking 10mg of Affinitor wore me out. I reduced the dosage to 5mg and now my side effects are minimal and I have good energy. I asked for the 7.5mg dosage but my doctor said that dosage is not offered. I know it's possible because other's on the forum here take 7.5mg (possibly combining 5mg and 2.5mg). I am at a fairly good cancer center so I was not happy hearing I could not get the 7.5mg dose. I saw in the liver mets forum that you were planning to take 7.5mg. Perhaps that is the only dosage on back order and you could consider the 10mg dosage. You can cut the pills with a pill cutter. I am sure you are not supposed to do this, but I did starting about a week before I got my doctor's approval to reduce my dosage. ~Kar
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KarPc....my MO is working on finding out the dosage situation... I left a message though saying I would rather try verzenio...all the people getting lung infections from this really freightened me.
. I will see what she says.0 -
Add me to the list Nichole, A/A messed with my lungs too
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it’s interesting reading this because this is supposedly my next “go to” for treatment.....if/when I stop verzenio...
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Well for those that don't frequent the liver thread:
Just got a message from my MO we are gonna go with Verzenio first...
"Hi Nicole - I have requested for to submit the prescription for the Verzenio 50 mg tablets tomorrow and seeing if we can cancel the Afinitor. One question for you. Afinitor can only be paired with exemestane or another aromatase inhibitor (letrozole or anastrozole). Verzenio can be paired with any of these or with faslodex. My preference is actually to pair the Verzenio with the faslodex so we can save the aromatase inhibitor for the afinitor that we may use in the future. Would this be ok with you? Faslodex, as a remind, is an injection in each buttocks. The shots are every 2 weeks x 3 shots and then every 4 weeks. Again, verzenio can be paired with any of them, but wondering if we could use faslodex since we might not be able to in the future. You have had both of them and know how you do with the shots, so just let me know."
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NicoleRed - I may be going down the same road as you, but my oncologist said that Afinitor/Exemestane was the only option she had. Does Verenzio target the cancer itself or is it hormonal? Verenzio was not mentioned as an option. I was just taken off of Ibrance/Arimidex since there was progression. Gene panal did not indicate any targeted therapy.
I'm not sure where to post this, so will post on multiple threads. I am so discouraged, depressed, angry as I explore getting different treatment options, including clinical trials. This is the third BC for me. Is each one "new" or did the original beat the treatment? I'm not sure if any of the treatments worked. Just talked to MD Anderson and they indicated they would not do anything different unless it was shown that the new treatment I just started fails. They would not consider me for clinical trials either. Is this generally the way it is with getting 2nd opinions on treatment options? Dec 2019 showed metastasis through skin, but nothing found in organs. Do I have to wait for it to show up in organs before other treatment is considered? That is so wrong.
2009 ER+ left breast. 52 yrs. Lumpectomy, Sentinel node removal, negative. Radiation 6 weeks, tamoxifen 5 years. Dense lumpy left breast, normal right.
2016 ER+ left breast. Probably a new cancer, but unknown. 4 rounds TC Aug-Oct 2016, Bi-lateral (my choice) Nov 2016, no reconstruction. 2 sentinel nodes remove, negative. ). Anastrozole 1 mg starting May 2017. Joint issues noticed immediately. Stopped Anastrozole after 3-4 months due to joint stiffness in. After several months of no AIs, fingers were feeling better. Started tamoxifen March 2018.
6/2019 Swelling in opposite arm, urgent care, no clot, lots of fluid. Scans, biopies etc, new tumor R-axilla Dxed 8/2019, ER + 85%. Start Ibrance/Arimidex 9/2019. CTs suggest Ibrance working. With LE and compression pumps starting to get control over lymphedema.
12/2020 - noticed "rash" and thickening, had been noticing loss in range of motion which I attributed to an old injury and getting older. DR says Ibrance/Arimidex not working anymore. Cancer has spread all over chest area in skin, PET did not find anything in organs. Lymphedema getting very bad. Stopped Ibrance/Arimidex Feb 2021, start Afinitor/Exemestane March 2021
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