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All Topics → Forum: Stage IV and Metastatic Breast Cancer ONLY → Topic: AFINITOR (EVROLIMUS) 2012

Topic: AFINITOR (EVROLIMUS) 2012

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 or those posting on behalf of a Stage IV patient. There is a separate forum for Stage IV Caregivers/Family in "Support and Community Connections".

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Posted on: Jan 8, 2012 05:25 PM, edited Jan 8, 2012 05:25 PM by Chickadee

Georgetown, TX Joined: Aug 2009 Posts: 3,548

Chickadee wrote:

And so it begins. This thread is for those who will be using Afinitor. Myself, I will use it in combo with Aromasin, but I believe there was at least one who will be combining it with Herceptin. Whatever your combination please share your SE's, challenges, and, YES, the hoped for PROGRESSION FREE INTERVALS we all yearn for.

I decided to take mine on a full stomach after dinner. Chocolate brownie for dessert! I also took a Promethezine and my Aciphex. I believe that I will go back to Aciphex in the a.m. but since I forgot it this morning, I took it just now. I want to stay ahead of any nausea that might occur. I have my Biotene mouthwash, along with all the other suggested mouth sore remedies just in case. Have to give up my Sonicare toothbrush I'm sure as it is pretty harsh.

First appt. with Oncologist is in 2 weeks. I took a fasting blood test Friday morning.

I'm still on Fentanyl patches and 2 Oxycodones in the morning for continued back spasms. That will still have to be addressed at some point. Maybe cyberknife if it turns out to be a lesion that just won't quit pinching me. I do love those Oxycodone naps. They are blissful.

So here we go. 2012 gonna be a new adventure and I'm demanding a good one.

Diagnosis: 9/1/2009, IDC, 1cm, Stage IV, mets, ER+/PR+, HER2-

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mindfulness… Los Angeles, CA Joined: Nov 2009 Posts: 106

Jan 16, 2012 05:02 PM mindfulness wrote:

I found this blur on the cancer society website about use of Off label drugs in cancer. I also have Medicare part B and going to see if It is covered:

The biggest problem is getting insurance plans to pay for off-label drug use (reimbursement). Many insurance companies will not pay for an expensive drug that is used in a way that is not listed in the approved drug label. They do this on the grounds that its use is "experimental" or "investigational."

In cancer treatment, these issues have been largely addressed through 1993 federal legislation that requires insurance to cover medically appropriate cancer therapies. This law includes off-label uses if the treatment has been tested in careful research studies and written up in well-respected drug reference books or medical journals. In 2008, Medicare rules were changed to cover more off-label uses of cancer treatment drugs.

Still, the health insurance coverage laws and regulations are complex. If your doctor is thinking about off-label drug use, you and your doctor should carefully check your health plan's coverage. If coverage is denied the first time, it may help for the doctor to send the insurer copies of peer-reviewed journal articles or other respected sources that support the off-label use.

Legal risk

Another problem is that off-label drug use often does not reflect "standard of care" treatment. This leads to possible concern about the legal risk of prescribing off-label should a patient have an unwanted or bad outcome from the treatment.

Lack of regulation and information

The FDA does not regulate the practice of medicine. In general, once the FDA approves a drug, licensed doctors can use it for any purpose they consider medically appropriate. Off-label use can vary greatly from one doctor to another. It depends on the doctor's preferences, knowledge, and past patient experiences.

One of the biggest problems related to widespread off-label use is the lack of information about how to best use the drug beyond what was approved. One of the most reliable and easy-to-find sources of information available to health professionals, caregivers, and patients is the drug label. But the label can only contain the information that has been approved by the FDA, and it does not mention off-label uses.

The medical literature reports clinical trials, including those that are not part of the FDA approval process. This is the main source of off-label use information, although treatment guidelines may also offer options that include off-label use. Treatment guidelines are based on information from medical literature, including clinical trials, and recommend standard ways to treat certain diseases.

Lack of information on off-label drug use and outcomes may also put patients at a higher risk for medication errors, side effects, and unwanted drug reactions. It is important that the patient and doctor talk about the possible risks of using the drug and weigh them against the possible benefits.

Every time you feel lost, alienated, or cut off from life, or from the world, every time you feel despair, anger, or instability, practice going home. Mindful breathing is the vehicle that you use to go back to your true home. Thich Nhat Hanh
Diagnosis: 5/18/2009, 3cm, Stage IV, mets, ER+/PR-, HER2-

scuttlers Nampa, ID Joined: Jun 2010 Posts: 1,550

Jan 16, 2012 05:18 PM scuttlers wrote:

Thank you Mindfulness, really looking forward to what you find out. THANKS!

My favorite side effect of treatments is BEING ALIVE!
Diagnosis: 2/4/2009, IBC, 6cm+, Stage IV, Grade 3, 11/17 nodes, mets, ER-/PR-, HER2+

exbrnxgrl ca Joined: Aug 2011 Posts: 3,458

Jan 16, 2012 05:27 PM exbrnxgrl wrote:

I can't say enough about how we need another weapon in our arsenal. I'm still on my first hormonal but you know how that goes, eventually.
Caryn

Bilateral mx 9/7/11 with one step ns reconstruction. As of 11/21/11, 2cm met to left hip
Diagnosis: 7/8/2011, IDC, 4cm, Stage IV, Grade 1, 1/15 nodes, mets, ER+/PR+, HER2-

deenah Sacramento, CA Joined: Aug 2010 Posts: 176

Jan 16, 2012 08:28 PM deenah wrote:

Thank you for posting that mindfulness. That makes me even more mad though. I have 3 oncologists recommending this drug for me, yet they still denied it. Who are they to circumvent my doctors who have been treating me since diagnosis?? I started xeloda this morning and am about to take my second dose. I have had nausea all day!

Chickadee - I hope you are getting a response! Either way I am glad the pain is gone.

www.caringbridge.org/visit/dee...
Diagnosis: 3/22/2010, IDC, 6cm+, Stage IV, Grade 3, 18/40 nodes, ER-/PR-, HER2+

nancyh Seattle Joined: Sep 2002 Posts: 1,810

Jan 17, 2012 08:14 PM nancyh wrote:

Deenah,

Sorry to hear about the nausea with Xeloda, same thing happened to me, but zofran really helped.

I got a reply from the mods and they suggested working directly with the drug maker, Novartis. I think this is probably our best shot at this point...have you filled out the form on their web site?

Still waiting, waiting, waiting to hear on whether my insurance approves this.

Stage 4, mets to liver, lung, pleura,and bone.
Diagnosis: IDC, 1cm, Stage IV, 3/14 nodes, mets, ER+/PR+, HER2-

deenah Sacramento, CA Joined: Aug 2010 Posts: 176

Jan 17, 2012 11:03 PM deenah wrote:

Nancy - yes, I did fax the form to navartis. Well, my doctor did actually. They are working on it, and I hope to hear from them this week. I will keep you posted. I am also mailing my second level appeal to Aetna tomorrow. I had help from Health Advocate on the letter and information I am sending. It is a long shot, but we will see what happens!

Still hoping you get approval Nancy! Chickadee needs company!

www.caringbridge.org/visit/dee...
Diagnosis: 3/22/2010, IDC, 6cm+, Stage IV, Grade 3, 18/40 nodes, ER-/PR-, HER2+

Chickadee Georgetown, TX Joined: Aug 2009 Posts: 3,548

Jan 18, 2012 11:07 AM Chickadee wrote:

I'm really interested to see how Novartis comes into play here. It would be great if more folks could just go through them and get the med at a reasonable cost. After all the more good results we get the better to get this FDA approved for BC.

This combo has really killed my appetite. It's a combination of lack of taste and things tasting bad that shouldn't. I don't think it translates into weight loss though because I bet the Aromasin is doing its nasty little thing of adding lbs. I'll see when they weigh me next Tues. Onc wanted a 2 week follow up from the startup.

No cold sores to speak of, though they did try to take hold. Gums are more likely to bleed when flossing. My hips ache just enough to be annoying. I do tend to sleep in and I can't say I have tons of energy. In fact I'm on the couch wrapped in a nice blanket and I think I'll give in to a nap.

Diagnosis: 9/1/2009, IDC, 1cm, Stage IV, mets, ER+/PR+, HER2-

EnglishMajo… Joined: Aug 2009 Posts: 2,088

Jan 18, 2012 11:16 AM EnglishMajor wrote:

Deenah, hope the Health Advocate can help.

Others to check with:

Diagnosis: 7/6/2009, IDC, 3cm, Stage IV, Grade 3, mets, ER+/PR+, HER2-

PJB Waco, TX Joined: May 2004 Posts: 4,166

Jan 18, 2012 02:08 PM PJB wrote:

Hey, Chicky, glad to hear you've won the battle of the mouth sores so far. And DO give in to that nap. I didn't know it did the funky taste bud thing. Is it like the metal mouth on the taxanes?

So I talked to my "health advocate" from my insurance plan today. (She calls occasionally to "check" on me - not that I don't trust her :)

Anyway, since my scans are done and I'm waiting on results (with TMs rising on Faslodex), I asked her what I'd need to do to try to get this drug. Turns out, of course, that my benefits don't include off-label use. But she advised me to have my onc's office send in a "pre-determination" claim for Afinitor. Then, it will go through claims and go through my "advocate." She expects it to be turned down, but said she will try to see if she can get it through, especially since I've used up pretty much all other options. Crossing fingers for good scans, first. And if that doesn't work, that she can somehow wrangle this drug for me.

Good luck to everyone trying to get it. And for pharmgirl and Chickadee, hope it works, works, works for a long, long time.

May 2004, Stage 2 IDC. Recurrence in 2005, with Xeloda and Taxotere. On Femara til mets diagnosis in Feb 2009. Have had almost every chemo out there. Finally came up with Taxotere as 8th or 9th one, and it helped! Now switched to Faslodex.
Diagnosis: mets, ER+/PR+, HER2-

Chickadee Georgetown, TX Joined: Aug 2009 Posts: 3,548

Jan 18, 2012 05:03 PM Chickadee wrote:

That was a nap and a half. Ahhhhhhhhh. PJB, I wouldn't say metal taste. It's like we gravitate towards food choices because of taste memories, smell, look of the food.........and that process just isn't there. I can't seem to anticipate the pleasure of even favorite foods. When the food is in front of me I would estimate I eat about 1/2 cup and have little desire for more. I've been inactive for months with the back pain and now the hip pain, so not working up an appetite either.

I think that is awesome testing the process ahead of time. The more patients push from our end hopefully it will be more likely to move towards standard of care.

Diagnosis: 9/1/2009, IDC, 1cm, Stage IV, mets, ER+/PR+, HER2-

chillipadi Joined: May 2010 Posts: 147

Jan 19, 2012 05:27 AM chillipadi wrote:

Ladies, ask your onco about Sirolimus (Rapamune), a drug in the same family as Everolimus which is now generic. My onco says that the French love it, and the Indians combine it with Tamoxifen for those who can't afford Everolimus. I started on this combo 3 weeks ago and I could see an improvement in the tumor site on my chest after less than 10 days. I have had no skin in that area for almost a year, due to the tumors breaking through my skin. Now, skin is clearly growing. Also, some of the lumps (they are on the surface) are gradually breaking down, while others have stabilised. They were growing rapidly before.

I am on 1mg of Sirolimus (i pill a day) and 10mg X 2 of Tamoxifen. My onco says that most oncos consider Sirolimus as being in the same category as Everolimus, but the pharmaceutical people play down Sirolimus because it is no longer under a patent, so they can't make money from it. It's early days still for me, but so far it's been encouraging. All hormonal drugs stopped working for me more than a year ago, and since then I've been through quite a few chemos. They stopped working after less than 3 cycles each too.

Don't waste time fighting for Everolimus. Ask your onco about Sirolimus.

PJB Waco, TX Joined: May 2004 Posts: 4,166

Jan 19, 2012 08:44 AM PJB wrote:

i will certainly be asking about this. Thanks so much for telling us about it

nancyh Seattle Joined: Sep 2002 Posts: 1,810

Jan 19, 2012 10:03 AM nancyh wrote:

Great advice, I will ask my onc about this.

Stage 4, mets to liver, lung, pleura,and bone.
Diagnosis: IDC, 1cm, Stage IV, 3/14 nodes, mets, ER+/PR+, HER2-

raro Joined: Mar 2005 Posts: 513

Jan 19, 2012 09:24 PM raro wrote:

My onc mentioned this drug just yesterday. It seems I've started progressing on Femara, so I figured we would switch to Aromasin or another AI. But he says that at a conference he attended last month, they showed that adding Afinitor to my Femara can sort of "jump start" my system to respond to Femara again. Anyone heard of this? I'm willing to try it if there's a chance it could work. I want to get as much out of my AIs as possible before switching.

nancyh Seattle Joined: Sep 2002 Posts: 1,810

Jan 20, 2012 10:40 AM nancyh wrote:

Still waiting, waiting, waiting for my insurance to approve or deny. I'm in purgatory. We had a big snow storm in Seattle that pretty much shut down the city, including my insurance company office.

Stage 4, mets to liver, lung, pleura,and bone.
Diagnosis: IDC, 1cm, Stage IV, 3/14 nodes, mets, ER+/PR+, HER2-

lovinmomma Spokane, WA Joined: Oct 2008 Posts: 1,841

Jan 20, 2012 11:23 AM lovinmomma wrote:

I hear you Nancy about that storm! We are ont he other side of the state and only got a bit of it!

Kimberly 44 yo fighter
Diagnosis: 10/1/2008, ILC, 6cm+, Stage IV, Grade 3, 26/26 nodes, mets, ER+/PR+, HER2-

seattle85 Joined: Jan 2011 Posts: 16

Jan 20, 2012 03:22 PM seattle85 wrote:

Hello, does anyone know if there are any open clinical trials for Everolimus, I checked clinical trials.gov but didn't see any. Also, does anyone know how you start the process of seeing if your insurance will cover it? Should I call the insurance company directly? I have Blue Cross Blue Shield and if anyone has any experience with them let me know.

Chickadee Georgetown, TX Joined: Aug 2009 Posts: 3,548

Jan 20, 2012 05:29 PM Chickadee wrote:

Don't know about trials that are still open. In terms of insurance I called my prescription drg provider, in this case, Medco, and wound my way to their specialty med group. Go to the horses mouth and ask.

Diagnosis: 9/1/2009, IDC, 1cm, Stage IV, mets, ER+/PR+, HER2-

mindfulness… Los Angeles, CA Joined: Nov 2009 Posts: 106

Jan 20, 2012 07:34 PM mindfulness wrote:

Seattle85 - it looks like there is one at the university of Kentucky. Here is the link:
clinicaltrials.gov/ct2/show/NC...
Chickadee dear- how are you doing? How are the side effects?
Love to all.

Lynn71 Joined: Jan 2012 Posts: 6

Jan 23, 2012 09:48 AM Lynn71 wrote:

seattle85, I just found out this past Friday that my insurance will cover the Afinitor. This was after a denial and one appeal. The first appeal was denied and hours after the second one was sent they came back and said it wasn't needed because it had been approved. My doctor's office is the one who did all of the leg work and started the process. They asked if I'd be willing to write a note with my signature that said I give them approval to work on the approval process on my behalf. They did everything.

sandilee California Joined: Jan 2008 Posts: 820

Jan 23, 2012 10:01 AM sandilee wrote:

Congratulations, Lynn! Let us know how it's going.

7/2011 -- found mets to spine and ribs
Diagnosis: 11/2007, IDC, 1cm, Stage IV, Grade 3, 0/6 nodes, ER+/PR-, HER2-

deenah Sacramento, CA Joined: Aug 2010 Posts: 176

Jan 23, 2012 10:46 AM deenah wrote:

Awesome news, Lynn!! Which insurance company? Saw my onc today and she is working on a strong letter. Plan on sending second appeal by the end of the week. In the meantime I'm on xeloda. The fatigue has hit big time!

www.caringbridge.org/visit/dee...
Diagnosis: 3/22/2010, IDC, 6cm+, Stage IV, Grade 3, 18/40 nodes, ER-/PR-, HER2+

Chickadee Georgetown, TX Joined: Aug 2009 Posts: 3,548

Jan 23, 2012 03:26 PM Chickadee wrote:

Hi guys. I've been asleep. A lot. Fatigue has hit pretty hard above and beyond any other SE.

Today was my 2 week check up with onc. We are both happy though unsure why all my pain has resolved. I've lost 6lbs. Food is completely unappetizing. Drink too. Slightly achy hip joints.

So we are going to order the 5mg Afinitor. Cutting the dose in half. She wasn't comfortable with using the pill splitter and said wait for the other prescription to arrive. At next 1 month follow up we'll do another CBC Chem panel and lipids. We took a baseline day before starting meds. It's possible I've had a drop in one of the blood counts that would explain the fatigue.

Lynn I'm so happy to hear of your success. Looking forward to your experienxe. I'm writing from my lovely comfy bed but I know I need to muster some desire to eat some of the spaghetti my son made.

Evrolimus/exemestane/Xgeva as of Jan 2012
Diagnosis: 9/1/2009, IDC, 1cm, Stage IV, mets, ER+/PR+, HER2-

nancyh Seattle Joined: Sep 2002 Posts: 1,810

Jan 23, 2012 08:54 PM nancyh wrote:

Lynn, great news! So happy to hear insurance is starting to cover this for us.

Chickadee - sorry to hear about the fatigue and lack of appetite.

I'm still in limbo with my insurance. I missed a call from my onc's office today, so will have to call tomorrow. Am expecting a denial, but I'll know more tomorrow.

Stage 4, mets to liver, lung, pleura,and bone.
Diagnosis: IDC, 1cm, Stage IV, 3/14 nodes, mets, ER+/PR+, HER2-

PJB Waco, TX Joined: May 2004 Posts: 4,166

Jan 24, 2012 06:26 AM PJB wrote:

Chickadee, I'm glad you're getting the dose cut. I hope that helps you want to eat. I've had to "force" myself to eat for a couple years now - it'd e nice to be starving.

nancyh Seattle Joined: Sep 2002 Posts: 1,810

Jan 24, 2012 09:34 PM nancyh wrote:

Hey gals,

Finally connected with the pre-auth gal at my cancer center and I'm still in limbo. They were working on an authorization through my medical insurance, but Everolimus is administered through my prescription drug service...duh, I could have told them that!! So, basically they have wasted the past 2 weeks trying to get my med insurance to authorize and are starting from scratch. Sigh. I'm guessing it will take them another couple weeks to get the auth (or denial) and several weeks at least beyond that if we file an appeal. I'm slightly stressed because my onc is "keeping me on a short leash" and is only giving Faslodex a couple months to work or I have to go back to big gun chemo.

Frustrated.

Stage 4, mets to liver, lung, pleura,and bone.
Diagnosis: IDC, 1cm, Stage IV, 3/14 nodes, mets, ER+/PR+, HER2-

deenah Sacramento, CA Joined: Aug 2010 Posts: 176

Jan 24, 2012 10:03 PM deenah wrote:

Nancy - tell them this is a matter if life and death (even if it isn't that emergent), and that you want an expedited review. They have to get an answer to you in 36 hours. Same goes for all subsequent appeals. Still holding out hope for approval for you!

www.caringbridge.org/visit/dee...
Diagnosis: 3/22/2010, IDC, 6cm+, Stage IV, Grade 3, 18/40 nodes, ER-/PR-, HER2+

Frapp Western, MA Joined: Jan 2010 Posts: 1,967

Jan 25, 2012 06:30 AM Frapp wrote:

Chickadee, hang in there. Your body may get use to the meds and you might get your energy back. That has happend to me. I'm on a BKM120/femara trial and spent the past two weeks struggling to make it through my workday so I could go home to bed. I actually had a couple days last week where I closed my door at lunch and took an hour nap to make it through the day. I seem to be getting my energy back this week. Maybe this is your body getting use to the meds. Here's hoping you get your energy back too.

Diagnosis: 12/24/2009, ILC, 6cm+, Stage IV, Grade 2, mets, ER+/PR+, HER2-

Lynn71 Joined: Jan 2012 Posts: 6

Jan 25, 2012 11:23 AM Lynn71 wrote:

Hi all:

I'm on day 6 of the Afinitor (I was able to get 7 sample pills prior to getting covered by insurance). So far I must say I feel pretty fabulous, but I just saw Chickadee's post about the fatigue hitting after 2 weeks. Im sorry to hear that Chickadee. Chickadee - how long did it take before you started to feel the fatigue? I do appear to have one canker sore on my tongue, but I am pretty sure it was starting up prior to me being on this drug, so getting on the drug may have just made an already present canker sore worse. Not sure. But that's all I have experienced so far. I will try to keep you guys posted if I experience any side effects. I hope everyone waiting on appeal receives approval!

gracem CT Joined: Mar 2005 Posts: 212

Jan 25, 2012 03:02 PM gracem wrote:

hi all,

Sorry it has taken me so long to jump in on this thread. I have been on a trial at MD Anderson of afinitor 10mg and arimidex for the past 7 months. The same trial as pharmgirl (Hey Rachel!). Although I think she is in the arm with 5mg afinitor. I have had great results. I have bone and liver mets. After 3 months on this combo my scan showed that my liver mets had reduced by 21%. First time in years I actually had reduction! It was pretty amazing. I had my 6 month scan last month. Unfortunately, the results were not as good but stable. Believe me, I've hads mets for 7 and a half years and I'll take stable. It does concern me that my run may be over soon.

As for side effects, I have not had any issue at all with mouth sores. I was a "prediabetic" and it seriously pushed me over the edge. I am on 2 types of insulin now. It also increased my triglycerides so I am on a med for that. I guess it is causing fatigue, but after this long with mets, who even knows anymore. LOL.

I still had to get approval from my health plan for coverage eventhough it is a trial. They "approved" it, but there is a $2000 co-pay. We have a $5000 out of pocket max yearly though, so once we hit $5000, it will be covered 100%. We have BC/BS Federal employee plan.

Last month, I talked to the study coordinator and there are still openings in this study. Dr. Jennifer Wheler is the primary investigator. This is a phase 1 trial. I never thought I would do a phase 1 trial, but this one is different because it is a drug that is already FDA approved for other cancers and the info about the BOLERO was just coming out when I was investigating. This is a solid tumor trial and there are people in the trial with other types of cancer like ovarian. I always search for bc trials so I learned something there.

Please feel free to ask any questions you have or pm me. I really hope the FDA puts bc on the approved list for this drug asap!!!!

Suzanne

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