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Topic: Afinitor/Aromasin 2013

Forum: Stage IV/Metastatic Breast Cancer ONLY —

Please respect that this forum is for members with stage IV/metastatic breast cancer only. There is a separate forum for caregivers and friends: Caring for Someone with Stage 4 or Mets.

Posted on: Feb 8, 2013 12:28PM

sueco wrote:

I am waiting for my pills to arrive and fearful of starting a chemo after almost seven years of anti-hormones.  I immediately started looking for info on this site, and the Afinitor topic was started in Jan. 8, 2012 with 35 pages of comments to go through.  Do you think it is possible to start a new topic now that this med combination has been just recently been approved by the FDA? 

Sue Dx 4/15/2006, Stage IV, mets, ER+ Hormonal Therapy 5/15/2006 Arimidex (anastrozole) Hormonal Therapy 8/18/2008 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy 10/20/2010 Faslodex (fulvestrant) Targeted Therapy 2/14/2013 Afinitor (everolimus) Radiation Therapy 1/15/2014 3DCRT: Bone Chemotherapy 2/17/2014 Xeloda (capecitabine) Chemotherapy 8/20/2015 Abraxane (albumin-bound or nab-paclitaxel)
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Sep 9, 2021 11:30PM Nkb wrote:

Intothe light- Afinitor has become generic so hopefully much cheaper than that! When I was taking it - it was still brand name and it cost $19,000 per month! I. thought that Ibrance was expensive. the pharmacist did tell me that they had a program (at kaiser) to help with the cost- so I would check into that.

Dx 12/2011, ILC, Both breasts, 6cm+, Stage IIIC, Grade 2, 34/40 nodes, ER+/PR+ Surgery 2/3/2012 Lymph node removal: Left, Right, Underarm/Axillary; Mastectomy: Left, Right Chemotherapy 2/27/2012 AC + T (Taxol) Radiation Therapy 9/10/2012 Hormonal Therapy 10/20/2012 Arimidex (anastrozole) Dx 5/2017, ILC, Stage IV, metastasized to bone, ER+/PR-, HER2- Hormonal Therapy 5/31/2017 Faslodex (fulvestrant) Targeted Therapy 5/31/2017 Ibrance (palbociclib) Targeted Therapy 3/12/2019 Afinitor (everolimus) Hormonal Therapy 3/12/2019 Aromasin (exemestane) Chemotherapy 3/9/2020 Xeloda (capecitabine)
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Sep 10, 2021 12:07AM nopink2019 wrote:

I'm on Medicare w/drug supplement. My copay is $620/mo now, but Jan is $2500. Then you are in catastrophic category for rest of the year. Exact $ depends on your part D plan. Diff between private & Medicare is that drug costs aren't included in OOP max, so there is no cap on what you pay during the year. Makes it important to check your part D plan each year against your drug list since you can change plan each year. Enrollment starts Oct 15th.

Dx 2008, IDC, Stage IA, Grade 3, ER+/PR-, HER2- Dx 2019, Stage IV, metastasized to bone/liver/lungs, ER+/PR-, HER2- Chemotherapy 8/23/2019 Taxotere (docetaxel) Chemotherapy 9/20/2019 Xeloda (capecitabine) Hormonal Therapy 11/12/2019 Faslodex (fulvestrant) Targeted Therapy 11/12/2019 Kisqali Hormonal Therapy 5/9/2021 Aromasin (exemestane) Targeted Therapy 5/9/2021 Afinitor (everolimus)
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Sep 10, 2021 10:33PM IntoLight wrote:

Thank you everyone. I did pick up my meds today. The Pharmacist gave me an enrollment sheet for financial help, which I will see if we qualify. It is based on actual income and since we are retired we might qualify. I am still trying to figure out what it means to be in the "donut hole" for pricing? I just want to make sure I am not missing anything. Thank you MN I will check on what Medicare plan we are on. It has all been fine until this medicine...no more than $10 copay. I also got my "Magic Mouthwash" so I think I am good to go.

Shining the light of God's grace to the world. Dx 5/20/2016, Left, 3cm, Stage IV, metastasized to bone/liver, ER+/PR+, HER2- Chemotherapy Xeloda (capecitabine) Hormonal Therapy Femara (letrozole)
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Sep 14, 2021 11:19PM nopink2019 wrote:

Anyone having body aches that might be caused by this combo? My active tumors are in my liver, but I've developed aches in hip joint after sitting for an hour and can barely stand afterward. Started on right side and now have some on left. I've also had lots of back ache between my shoulder blades. I've been doing water aerobics and pain doesn't interfere with that nor is my movement inhibited. Scans & MO appt is mid Oct. Recent regular visit w/internist who agreed that I should try chiropractor. Having trouble finding one who is vaxxed and I don't want anyone that close to me who isn't. I've been taking ibuprofen & using those cold/heat pads on my back. Advice?

Dx 2008, IDC, Stage IA, Grade 3, ER+/PR-, HER2- Dx 2019, Stage IV, metastasized to bone/liver/lungs, ER+/PR-, HER2- Chemotherapy 8/23/2019 Taxotere (docetaxel) Chemotherapy 9/20/2019 Xeloda (capecitabine) Hormonal Therapy 11/12/2019 Faslodex (fulvestrant) Targeted Therapy 11/12/2019 Kisqali Hormonal Therapy 5/9/2021 Aromasin (exemestane) Targeted Therapy 5/9/2021 Afinitor (everolimus)
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Sep 17, 2021 12:21PM IntoLight wrote:

NM, I am only five days into this med and so far everything is fine. No extra aches and my stomach issues have calmed way down. I don't know if this is just the peace before the storm but I will take it. I alos pray it is working. My mets are liver and spine...

Shining the light of God's grace to the world. Dx 5/20/2016, Left, 3cm, Stage IV, metastasized to bone/liver, ER+/PR+, HER2- Chemotherapy Xeloda (capecitabine) Hormonal Therapy Femara (letrozole)
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Sep 18, 2021 10:39AM jobur wrote:

nopink, it has been quite a while since I was on this combo, but I still remember body aches being a bad se during my time on A/A. Good news is it's probably an se and not mets. Hope you find I way to alleviate the aches. I found massage helpful.

Intolight, dropped in to this thread to say hi and wish you well on your new tx. I will miss your voice on the Xeloda thread. Regarding the part D donut hole, that is the bad place in the part D pricing when you will have to pay the most for drugs. Once you have paid a certain dollar amount you pass into the catastrophic phase nopink mentioned, and your drug prices go way down. My spec pharm has always been a blessing in helping me find either a foundation or big pharma patient assistance program to pay for the expensive tx I have received. You do not have to be very low income to qualify. Best wishes on this and a good long run on this tx.

The unaimed arrow never misses. (From a Maui rules T shirt) What do you know, and what do you just believe?" Linda Hogan "Power" Surgery 7/1/2014 Lumpectomy: Left Dx 8/1/2014, IDC, Left, 1cm, Stage IV, metastasized to bone, Grade 2, 4/7 nodes, mets, ER+/PR+, HER2- Hormonal Therapy 8/4/2014 Arimidex (anastrozole) Hormonal Therapy 4/30/2015 Faslodex (fulvestrant) Targeted Therapy 8/17/2015 Ibrance (palbociclib) Dx 11/20/2018, IDC, 1cm, Stage IV, metastasized to liver, ER+/PR-, HER2- (FISH) Hormonal Therapy 12/4/2018 Aromasin (exemestane) Targeted Therapy 1/1/2019 Afinitor (everolimus) Hormonal Therapy 7/15/2019 Faslodex (fulvestrant) Targeted Therapy 7/17/2019 Piqray (alpelisib) Targeted Therapy 1/12/2021 Nerlynx Chemotherapy 3/14/2021 Xeloda (capecitabine)
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Sep 19, 2021 02:23PM BlueGirlRedState wrote:

NoPink - I am currently taking exemestane/Everolimus (Afinitor). Joint aches/stiffness most likely from exemestane, but I wonder if Everolimus might make it worse.

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Sep 19, 2021 07:19PM nopink2019 wrote:

Looked up SE & joint pain is listed 1st. Glad to hear it is probably drugs, not tumors pressing something. Trying to find chiropractor who has been vaxxed. If not, I'll be more frequent with massages. But wanted to hear what chiro might have in mind.

Dx 2008, IDC, Stage IA, Grade 3, ER+/PR-, HER2- Dx 2019, Stage IV, metastasized to bone/liver/lungs, ER+/PR-, HER2- Chemotherapy 8/23/2019 Taxotere (docetaxel) Chemotherapy 9/20/2019 Xeloda (capecitabine) Hormonal Therapy 11/12/2019 Faslodex (fulvestrant) Targeted Therapy 11/12/2019 Kisqali Hormonal Therapy 5/9/2021 Aromasin (exemestane) Targeted Therapy 5/9/2021 Afinitor (everolimus)
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Oct 2, 2021 08:45PM IntoLight wrote:

I don't know about the rest of you, but I am feeling much better on AA than on Xeloda. I don't want to jinx anything, but I can do this. Of course I have no idea whether it is working!


Shining the light of God's grace to the world. Dx 5/20/2016, Left, 3cm, Stage IV, metastasized to bone/liver, ER+/PR+, HER2- Chemotherapy Xeloda (capecitabine) Hormonal Therapy Femara (letrozole)
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Oct 3, 2021 04:28AM JoynerL wrote:

into Light -

That's GREAT news!!

XOXO

--Lynn Dx 12/1990, IDC, Left, <1cm, Stage IIA, ER+ Surgery 1/1/1991 Lymph node removal: Underarm/Axillary; Mastectomy: Left; Reconstruction (left): Nipple reconstruction, Saline implant Chemotherapy 1/14/1991 CMF Hormonal Therapy 6/30/1991 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy 10/31/2002 Evista (raloxifene) Dx 2/9/2017, IDC, Left, 1cm, Stage IV, metastasized to bone, ER+/PR-, HER2- Hormonal Therapy 3/5/2017 Faslodex (fulvestrant) Targeted Therapy 3/5/2017 Ibrance (palbociclib) Radiation Therapy 1/8/2019 External: Bone Chemotherapy 1/16/2019 Xeloda (capecitabine) Radiation Therapy 10/26/2020 External: Lymph nodes
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Oct 3, 2021 07:15PM Nkb wrote:

into the light- I agree. Also easier than Ibrance. I never tanked my ANC.

When I told my MO this- she was in disbelief

Hope you get a good long run

Dx 12/2011, ILC, Both breasts, 6cm+, Stage IIIC, Grade 2, 34/40 nodes, ER+/PR+ Surgery 2/3/2012 Lymph node removal: Left, Right, Underarm/Axillary; Mastectomy: Left, Right Chemotherapy 2/27/2012 AC + T (Taxol) Radiation Therapy 9/10/2012 Hormonal Therapy 10/20/2012 Arimidex (anastrozole) Dx 5/2017, ILC, Stage IV, metastasized to bone, ER+/PR-, HER2- Hormonal Therapy 5/31/2017 Faslodex (fulvestrant) Targeted Therapy 5/31/2017 Ibrance (palbociclib) Targeted Therapy 3/12/2019 Afinitor (everolimus) Hormonal Therapy 3/12/2019 Aromasin (exemestane) Chemotherapy 3/9/2020 Xeloda (capecitabine)
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Oct 8, 2021 03:02PM IntoLight wrote:

Ok, anyone else pee five times a night on this med? Also, went to the lab this morning for a fasting lab and urine sample and couldn't produce more than a drop. Drank 48 ounces of water, waited over 45 minutes, tried again, and still couldn't go. So I went home. Anyone have any suggestions? I only went once when I got up, and drank lots of water before I left the house (it is a 20 minute drive). So frustrating. I am sure I will need to try again in a day or two... My labs are all over the place now so I don't know what is going on. Such is our life!

Shining the light of God's grace to the world. Dx 5/20/2016, Left, 3cm, Stage IV, metastasized to bone/liver, ER+/PR+, HER2- Chemotherapy Xeloda (capecitabine) Hormonal Therapy Femara (letrozole)
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Oct 8, 2021 07:44PM nopink2019 wrote:

IntoLight - Me too! I'm fine during the day, but the minute I lie in bed, I get up & pee, then again in 30 min etc until I fall asleep. Then at 4am. Is it when we take A/A? I take Aromisin @ lunch & Afinitor @ bedtime. I thought it was because I get thirsty late afternoon & during /after dinner & drrink too much water late.

Dx 2008, IDC, Stage IA, Grade 3, ER+/PR-, HER2- Dx 2019, Stage IV, metastasized to bone/liver/lungs, ER+/PR-, HER2- Chemotherapy 8/23/2019 Taxotere (docetaxel) Chemotherapy 9/20/2019 Xeloda (capecitabine) Hormonal Therapy 11/12/2019 Faslodex (fulvestrant) Targeted Therapy 11/12/2019 Kisqali Hormonal Therapy 5/9/2021 Aromasin (exemestane) Targeted Therapy 5/9/2021 Afinitor (everolimus)
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Oct 8, 2021 08:58PM IntoLight wrote:

Nopink, you may be onto something. I take both my pills together at 6:00 pm. Were you told to take them separately? My MO told me together was fine. Hmmmmm...

Shining the light of God's grace to the world. Dx 5/20/2016, Left, 3cm, Stage IV, metastasized to bone/liver, ER+/PR+, HER2- Chemotherapy Xeloda (capecitabine) Hormonal Therapy Femara (letrozole)
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Oct 8, 2021 11:28PM nopink2019 wrote:

My MO said together is fine too. I just split them up because I take some other stuff (lexapro &ritalin that need to be taken in the day time and some (losartan, clonazepam) that I need to take at bed time. I split them up to not upset my stomach all at once.

Dx 2008, IDC, Stage IA, Grade 3, ER+/PR-, HER2- Dx 2019, Stage IV, metastasized to bone/liver/lungs, ER+/PR-, HER2- Chemotherapy 8/23/2019 Taxotere (docetaxel) Chemotherapy 9/20/2019 Xeloda (capecitabine) Hormonal Therapy 11/12/2019 Faslodex (fulvestrant) Targeted Therapy 11/12/2019 Kisqali Hormonal Therapy 5/9/2021 Aromasin (exemestane) Targeted Therapy 5/9/2021 Afinitor (everolimus)
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Oct 14, 2021 11:56AM BlueGirlRedState wrote:

I usually pee every 2-3 hours, this has not changed with Everolimus(Afinitor) / Exemestane. But recently it seems like I am retaining water, maybe 4 pounds or more. Also, it seems like I need to pee during the night 2-3 times, which is new. Is it just getting older? The cancer? the drugs? Often, I slept the night through without getting up, and sometimes only once.

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Oct 14, 2021 12:12PM IntoLight wrote:

BlueGirl, I think it is the E/E as I have similar effects. It definitely has increased my urine output. It is easier on my stomach so far though. I will accept the change...

Shining the light of God's grace to the world. Dx 5/20/2016, Left, 3cm, Stage IV, metastasized to bone/liver, ER+/PR+, HER2- Chemotherapy Xeloda (capecitabine) Hormonal Therapy Femara (letrozole)

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