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All TopicsForum: Stage IV and Metastatic Breast Cancer ONLY → Topic: Afinitor/Aromasin 2013

Topic: Afinitor/Aromasin 2013

Forum: Stage IV and Metastatic Breast Cancer ONLY —

A place for those managing the ups & downs of a Stage IV/metastatic breast cancer diagnosis. Please respect that this forum is for Stage IV members only. There is a separate forum For Family and Caregivers of People with a STAGE IV Diagnosis.

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 5/14/2006 Arimidex (anastrozole) Hormonal Therapy 8/17/2008 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy 10/19/2010 Faslodex (fulvestrant) Targeted Therapy 2/13/2013 Afinitor (everolimus) Radiation Therapy 1/14/2014 3DCRT: Bone Chemotherapy 2/16/2014 Xeloda (capecitabine) Chemotherapy 8/19/2015 Abraxane (albumin-bound or nab-paclitaxel)
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Feb 8, 2013 12:41PM Moderators wrote:

Great idea Suecolo2!

For a good reference point for you and the others who join here, you may want to read up on the main Breastcancer.org site's section on Afinitor for info on how it works, who it's for, what to expect, and managing side effects.

Hope this helps!

--The Mods

To send a Private Message to the Mods: community.breastcancer.org/mem...
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Feb 8, 2013 03:02PM sunny210 wrote:

I have been on Afinitor/Femara (I was NED on Aromasin for almost 5 years, so my doc wanted something different) since last April. My tumor markers have taken a nosedive and scans show regression. I carefully wrap the pills in marshmellow creme to help prevent mouth sores, and I haven't had any. I think some people get the mouth sores even when they do coat the pill, so I may just be lucky. The worst SE is that my tasters are off. Most food tastes like either mud or metal. Lovely, huh! And I don't have much of an appetite in general. I work hard to keep my weight up (that sure didn't happen pre BC) and it is really tough. All in all,though,  it's been a petty good chemo for me. Good luck.

Sandy

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Feb 8, 2013 03:58PM Chickadee wrote:

Fine by me, but I would hate for some of the serious discussions of the problems we had with respiratory issues to disappear.  Newcomers to A/A should be aware of the challenge up and to and including the death of one of our members.

I'm in such bad shape, I'm wearing prescription underwear." Phyllis Diller 1917-2012 Dx 9/1/2009, IDC, 1cm, Stage IV, Grade 3, mets, ER+/PR+, HER2-
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Feb 8, 2013 09:19PM sunny210 wrote:

Sorry. I'll go to the other thread. I had the same inflammatory reaction to my lungs with Gemzar. I almost didn't survive and was in the hospital forever. It was scary.

Sandy

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Feb 11, 2013 08:26AM ForestDweller wrote:

Suecolo....I just wanted to tell you that I'm in my 10th week of the A/A combo and haven't felt this great in a long time.
I've had three mouthsores and the Afinitor rash which seems to be getting better. I do lose some hair every morning. My appetite has increased and I have to be careful there. Hoping this medicine works for me because I feel normal on it.

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Feb 11, 2013 11:03AM BaseballFan wrote:

I had 3 mouth sores that popped up the first week.  Onc prescribed Magic Mouthwash and the sores are healing!  I also swish with salt/soda/water solution and non-alcohol mouthwash.....but the Magic Mouthwash is was started the healing.

Bobbi Dx 3/14/2009, 6cm+, Stage IV, 11/14 nodes, mets, ER+/PR-, HER2- Surgery 7/23/2009 Lumpectomy: Left; Lymph node removal: Left, Sentinel Surgery 10/1/2009 Lumpectomy: Right Chemotherapy 9/1/2010 Xeloda (capecitabine) Chemotherapy 2/13/2012 Xeloda (capecitabine) Chemotherapy 12/12/2012 Taxol (paclitaxel) Targeted Therapy 1/26/2013 Afinitor (everolimus) Chemotherapy 10/1/2013 Carboplatin (Paraplatin), Gemzar (gemcitabine)
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Feb 11, 2013 11:05AM sueco wrote:

ForestDweller you made my day. Innocent My pills are due today so your response was just what I needed.  My mistake is trying to learn too much about this drug combo.  I have had few side effects from the anti-hormones I have taken for 7 years except feeling like an old lady at times with stiff and aching legs.  Hopefully this will mean this chemo combo will not bother me too much either.  I will definitely watch my mouth closely.  Where was your rash and what helped it by the way?  I am just so happy that you are feeling so good - what an  uplifting response from you.Smile

Sue Dx 4/15/2006, Stage IV, mets, ER+ Hormonal Therapy 5/14/2006 Arimidex (anastrozole) Hormonal Therapy 8/17/2008 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy 10/19/2010 Faslodex (fulvestrant) Targeted Therapy 2/13/2013 Afinitor (everolimus) Radiation Therapy 1/14/2014 3DCRT: Bone Chemotherapy 2/16/2014 Xeloda (capecitabine) Chemotherapy 8/19/2015 Abraxane (albumin-bound or nab-paclitaxel)
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Feb 11, 2013 11:51AM ForestDweller wrote:

My rash was mostly under my arms where it was very itchy. There were also single spots on my forearms and my face. My oncologist said I can use over the counter cortisone cream but not under my arms or I could get a fungus there. He also allowed Benedryl. But I didn't use anything.
Please keep us posted on how you are doing. I hope and pray this works for all of us.

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Feb 12, 2013 12:41PM lwd wrote:

I, too, am concerned about discussions disappearing about respiratory problems caused by Afinitor.  The A/A treatment is on my onc's list.  I'm not sure I'll use it since from the beginning my mets have been in the lung pleura.  I'm afraid it will take lots of convincing before I will be willing to try it.  My onc said he would do xrays periodically to check for streaking in the lung.  I'm still not convinced it would be the right drug for me.

Lane

Lane Dx 2/4/2009, IDC, Stage IV, Grade 2, 0/11 nodes, ER+/PR+, HER2- Hormonal Therapy 2/7/2009 Femara (letrozole) Hormonal Therapy 4/17/2012 Hormonal Therapy 11/7/2012 Faslodex (fulvestrant)
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Feb 12, 2013 12:50PM - edited Feb 12, 2013 12:51PM by Chickadee

community.breastcancer.org/top...

A link to the initial thread. Important experiences in there in case this thread becomes primary. Afinitor while good for many, isn't for everyone. .

I'm in such bad shape, I'm wearing prescription underwear." Phyllis Diller 1917-2012 Dx 9/1/2009, IDC, 1cm, Stage IV, Grade 3, mets, ER+/PR+, HER2-
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Feb 12, 2013 01:21PM ForestDweller wrote:

I would also hope that people read the Afinitor package insert before putting the first pill into their mouth. In it the potential lung problem with potentially fatal outcome is the first adverse reaction mentioned. My cancer clinic also hands out printouts for every drug I receive and the Afinitor print out also clearly stated the potential problems. I'm sure people will read those BEFORE checking online discussion groups for info.

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Feb 12, 2013 03:08PM - edited Feb 12, 2013 03:09PM by Chickadee

When I started this med last year the respiratory issue was not emphasized. Few patients with BC had been approved so I imagine they didn't have the complaints. Even the study that got everyone so excited in San Antonio had it as potential but not a major concern. I read the insert then and I don't remember the emphasis it has now.

What I learned from this is not to get overly excited about big announcements of wonder treatments anymore. Each one has to be carefully considered for the individual.

I should have paid more attention to my mothers best advice..."never be the first one to buy anything".

I'm in such bad shape, I'm wearing prescription underwear." Phyllis Diller 1917-2012 Dx 9/1/2009, IDC, 1cm, Stage IV, Grade 3, mets, ER+/PR+, HER2-
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Feb 12, 2013 03:37PM ForestDweller wrote:

If I remember it correctly the insert states that 14% will get lung issues. That's quite high in my book. I'm sorry to hear you were one of them. I'm hoping it's something that will work for me for a long time because after this there's only chemo left for me....until something new gets approved.

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Feb 12, 2013 06:34PM sueco wrote:

My meds did not arrive in the mail today.  I guess I am confused as I was told that Afinitor is a chemo drug.  I had to sit for 1.5 hr. while some patient advocate and a nurse told me about side effects, gave me literature, etc.  The paperwork did not use the word "chemo" on it, but they said yes it is chemo.  The FDA approved it for breast cancer just last July but it is a drug that has been used for liver cancer, etc., before using it for breast cancer.

Sue Dx 4/15/2006, Stage IV, mets, ER+ Hormonal Therapy 5/14/2006 Arimidex (anastrozole) Hormonal Therapy 8/17/2008 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy 10/19/2010 Faslodex (fulvestrant) Targeted Therapy 2/13/2013 Afinitor (everolimus) Radiation Therapy 1/14/2014 3DCRT: Bone Chemotherapy 2/16/2014 Xeloda (capecitabine) Chemotherapy 8/19/2015 Abraxane (albumin-bound or nab-paclitaxel)
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Feb 13, 2013 09:08AM ForestDweller wrote:

My oncologist called it a targeted therapy. Not that our body cares what it's called.

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Feb 14, 2013 03:27AM ForestDweller wrote:

Hi loneplume...for me tamoxifen failed...then faslodex...then xeloda put me into NED...then femara failed and cancer came back...now it's hoping the A/A combo is working. My doctor wants me to be on it for three months before we scan.

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Feb 14, 2013 10:08AM sueco wrote:

Loneplum has your doctor mentioned Faslodex.  When diagnosed almost 7 years ago, I was on Arimidex (similar to Aromosin), then Tamoxifen, then Faslodex.  Each helped for around two years.  I was always told that the last Al would be Faslodex which you did not mention.  So yes, a new Al can work when one stops working.

Sue Dx 4/15/2006, Stage IV, mets, ER+ Hormonal Therapy 5/14/2006 Arimidex (anastrozole) Hormonal Therapy 8/17/2008 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy 10/19/2010 Faslodex (fulvestrant) Targeted Therapy 2/13/2013 Afinitor (everolimus) Radiation Therapy 1/14/2014 3DCRT: Bone Chemotherapy 2/16/2014 Xeloda (capecitabine) Chemotherapy 8/19/2015 Abraxane (albumin-bound or nab-paclitaxel)
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Feb 14, 2013 10:37AM lwd wrote:

Loneplume,

I started with Femara and was NED for a little over 3 years!  I LOVED that treatment.  Only very minor joint issues.  Then we added Tamoxifen to the Femara.  After 6 months I developed a DVT and vaginal bleeding, which we can now attribute to the Tamoxifen.  NOT a good drug for me.  Then I tried Megace for 3 months.  Tumor markers kept rising.

Now I'm on Faslodex, similar to the AI's, just works in a different way.  I'm into my 4th month, but the onc wants to keep me on it a little longer.  He has a patient that finally showed stability after 6-7 months.  He said sometimes the Faslodex takes a little longer to start working.  I'd ask about it. 

My onc has also mentioned trying Halotestin (an androgen), which I'm resisting at this point,) followed by synthetic estrogen (flooding your system), which sometimes can work when all the other anti-hormonals are no longer working.  He knows I'm fighting using chemo, so is maybe more willing to try some of those drugs which are less commonly used now.  I appreciate his willingness to let me choose.  But, Faslodex seems to work well for lots of women with very few SE's.  I've had none.  Still hoping it works for me.

good luck and all my best,

Lane

Lane Dx 2/4/2009, IDC, Stage IV, Grade 2, 0/11 nodes, ER+/PR+, HER2- Hormonal Therapy 2/7/2009 Femara (letrozole) Hormonal Therapy 4/17/2012 Hormonal Therapy 11/7/2012 Faslodex (fulvestrant)
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Feb 14, 2013 07:05PM chefmiche wrote:

I have been on A/A for almost 3 weeks w min se and today went to Dr bc my throat is hurting, can't swallow without hurting, he said I have an acute throat infection and prescribed Levaquin and pink magic mouthwash. I haven't read where anyone has mentioned this as a side effect, right? I haven't had one mouth sore unless that's what is in my throat?

Chemotherapy 7/10/2007 AC + T (Taxol) Surgery 11/23/2007 Mastectomy: Left, Right Hormonal Therapy 11/29/2007 Radiation Therapy 1/15/2008 Breast Surgery 4/15/2008 Reconstruction (left): DIEP flap, Nipple reconstruction; Reconstruction (right): DIEP flap, Nipple reconstruction Dx 9/2011, Stage IV, mets, ER+/PR+, HER2- Hormonal Therapy 9/28/2011 Aromasin (exemestane) Radiation Therapy 10/5/2011 Bone Surgery 12/9/2011 Prophylactic ovary removal Targeted Therapy 1/29/2013 Afinitor (everolimus) Chemotherapy 5/13/2013 Xeloda (capecitabine) Chemotherapy 3/13/2014 Gemzar (gemcitabine) Hormonal Therapy 8/14/2014 Faslodex (fulvestrant) Radiation Therapy 11/11/2014 Bone Chemotherapy 2/6/2015 Halaven (eribulin)
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Feb 14, 2013 09:51PM sueco wrote:

I just took my first pill and hope I also have miinimum side effects.  I also just read all the info that came with the pills.  One mentioned is mild sore throat and to contact your doctor if you have a persistent sore throat.  Did your doctor think it could be a mouth sore in your throat?  Of course, this is one of many possible side effects.  I should not even read them.  I never did with my anti-hormone pills and had few side effects.  Maybe not knowing is better as I can see me worrying about every change in my body now. I did put the pill in marshmellow cream as others suggest which seemed easy. 

Sue Dx 4/15/2006, Stage IV, mets, ER+ Hormonal Therapy 5/14/2006 Arimidex (anastrozole) Hormonal Therapy 8/17/2008 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy 10/19/2010 Faslodex (fulvestrant) Targeted Therapy 2/13/2013 Afinitor (everolimus) Radiation Therapy 1/14/2014 3DCRT: Bone Chemotherapy 2/16/2014 Xeloda (capecitabine) Chemotherapy 8/19/2015 Abraxane (albumin-bound or nab-paclitaxel)
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Feb 15, 2013 09:58AM ForestDweller wrote:

This week I have the dreaded side effect: Insomnia. Oh how I hate that one...lol. Also have hardly any eyebrows left and don't like the look of drawn in ones.

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Feb 15, 2013 10:51AM lwd wrote:

Forest Dweller,

I didn't realize there can be hair loss from Afinitor.  I did read the list of SE's.  Maybe I was more focused on the possible lung issues.  Is hair loss one of the more common SE's?  Have you lost lots of hair?  I read somewhere you can buy stick-on eyebrows, which doesn't appeal to me.  But, then, when I think about it, I have black, quite thick eyebrows, which I have to pluck a little.  I would look so totally different without eyebrows that maybe I'd consider stick-on's!  I keep thinking of Groucho Marx, LOL! 

Sorry about the insomnia.  That is so miserable.  I take 1/2 an Ambien when I can't sleep, and it works like a dream.  Don't know about using it when on Afinitor, though.  You'll have to ask.

I notice you're on Xgeva.  I LOVE that one.  So easy.  I was on Zometa infusions for 2 years, then they switched me.  This is so quick.  Keeping my fingers crossed, but my bone mets haven't reared their ugly heads in almost 4 years.  So we think the bisphosphonates must be working.

Have a good day, to all,

Lane

Lane Dx 2/4/2009, IDC, Stage IV, Grade 2, 0/11 nodes, ER+/PR+, HER2- Hormonal Therapy 2/7/2009 Femara (letrozole) Hormonal Therapy 4/17/2012 Hormonal Therapy 11/7/2012 Faslodex (fulvestrant)
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Feb 15, 2013 12:02PM ForestDweller wrote:

I've lost about half my hair. It was thick to start with so I'm still OK. I don't think it's common to lose so much. Haha stick on eyebrows .....i would lose one and not know it.
My doctor prefers homeopathic sleep aids. Alteril is what worked for me during initial chemo in 2009.
Zometa used to make we vomit the next morning. Xgeva is great. I'm happy to hear you're doing so well.

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Feb 15, 2013 02:03PM ForestDweller wrote:

I take mine with dinner in the evening. My doc said to expect some dizziness but I don't get that.
Chin hair.....what a thrill...haha. My chin seems OK for now. Happy about not having to shave my legs anymore. Come to think of it the hairloss started with my couple of months on femara.

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Feb 15, 2013 03:07PM lwd wrote:

I take my 1/2 Afinitor when I go to bed.  I've never taken a whole one.  Nervous about that, and 1/2 has always worked for me.  Usually it relaxes me within an hour, then I'm a gonner.  Haven't had any problems with weird dreams or a hungover feeling the next day, but I know some have issues with that.  Melatonin and a couple of other natural products didn't seem to work for me. 

I have thick hair, and I haven't noticed it has thinned at all on any of the AI's over the past 4 years.  I do have a few chin hairs which appeared around menopause age.  They seem to get coarser as time goes by.  Tweezers will get them, but I have to get a good grip!  It's satisfying to pull them.  LOL.

Lane

Lane Dx 2/4/2009, IDC, Stage IV, Grade 2, 0/11 nodes, ER+/PR+, HER2- Hormonal Therapy 2/7/2009 Femara (letrozole) Hormonal Therapy 4/17/2012 Hormonal Therapy 11/7/2012 Faslodex (fulvestrant)
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Feb 15, 2013 03:12PM lwd wrote:

What am I thinking?  I'm talking about 1/2 Ambien for sleep, and typing Afinitor!!!  I'm not even on Afinitor!!!  LOL.  Sorry!  This is what happens when I try to communicate after taking a pain pill!!

Sorry everyone.  I'm signing off now!!!

Lane

Lane Dx 2/4/2009, IDC, Stage IV, Grade 2, 0/11 nodes, ER+/PR+, HER2- Hormonal Therapy 2/7/2009 Femara (letrozole) Hormonal Therapy 4/17/2012 Hormonal Therapy 11/7/2012 Faslodex (fulvestrant)
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Feb 15, 2013 03:15PM sueco wrote:

I took my pill right after the Big Bang last night at 7:30 pm.  Wanted a few laughs first.  It is 1 pm now, and I would never know I took Afinitor.  Sitting here figuring I will just go to the public pool and swim laps while I still feel energetic.  Also Friday night is always my wine time and still feel like my two glasses.  Wonder if I dare taking this chemo drug??  I told the nurse and she didn't say I could not drink wine.  She probably figured I could not even stomach wine, and that may happen after a week of this med.

Sue Dx 4/15/2006, Stage IV, mets, ER+ Hormonal Therapy 5/14/2006 Arimidex (anastrozole) Hormonal Therapy 8/17/2008 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy 10/19/2010 Faslodex (fulvestrant) Targeted Therapy 2/13/2013 Afinitor (everolimus) Radiation Therapy 1/14/2014 3DCRT: Bone Chemotherapy 2/16/2014 Xeloda (capecitabine) Chemotherapy 8/19/2015 Abraxane (albumin-bound or nab-paclitaxel)
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Feb 15, 2013 03:26PM ForestDweller wrote:

This discussion is getting funny ....I love it. I also take the 10 mg and will start week 11 tonight.

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Feb 16, 2013 05:34PM ForestDweller wrote:

I still love my coffee but many foods taste bitter......potato skins, pizza, anything with tomato, ham. Sweets are still my weakness. At the moment it's oatmeal cookies, banana bread and ice cream.

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Feb 16, 2013 05:35PM FriendRN wrote:

I have a friend who will be starting Aromasin/Afinitor this week and wanted to get some more information for her. Do you all who are taking it always put your Afinitor in something creamy to take it? I have heard and read about the mouth sores that you can get from it and wondered what people's experience is with it. Also, is the 10 mg dose working for everyone? Has anyone had a dose reduction due to side effects? Thanks for any information you can share. It has been helpful to read the comments already submitted.  

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