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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. There is a separate forum For Family and Caregivers of People with a STAGE IV Diagnosis.

Posted on: Jan 9, 2012 10:55AM - edited Jan 9, 2012 10:55AM by Chickadee

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.

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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Jan 9, 2012 11:03AM Naniam wrote:

Chickadee, not on this regimen but I wanted to drop by and wish you all the best.  I'll check in just to see how you and the other gals that join you are doing.

Here's to wonderful results -   Hugs,  Brenda  

Dx 8/18/2005, IDC, Right, 3cm, Stage IV, metastasized to bone, Grade 2, 0/7 nodes, mets, ER+/PR+, HER2-
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Jan 9, 2012 11:05AM nancyh wrote:

Hello Chickadee,

I will be starting Afinitor/Everolimus with Faslodex on Thurs (assuming my insurance agrees to pay for this off label).  Here's to lo-o-o-n-n-g-g time between progressions for us!!

NancyH 

Stage 4 in 2009, mets to liver, lungs, bones, and brain. Dx 8/12/2002, IDC, 1cm, Stage IIB, 3/12 nodes, ER+/PR+, HER2- Chemotherapy 10/1/2002 AC Chemotherapy 1/1/2003 Taxol (paclitaxel) Hormonal Therapy 5/1/2003 Dx 4/2/2007, IDC, 1cm, Stage II, ER+/PR+, HER2- Chemotherapy 6/1/2007 CMF Dx 9/1/2009, IDC, Stage IV, metastasized to brain/bone/liver/lungs, mets, ER+/PR+, HER2- Targeted Therapy 9/1/2009 Avastin (bevacizumab) Chemotherapy 9/1/2009 Abraxane (albumin-bound or nab-paclitaxel) Hormonal Therapy 6/1/2010 Femara (letrozole) Chemotherapy 9/1/2011 Xeloda (capecitabine) Hormonal Therapy 1/1/2012 Faslodex (fulvestrant) Chemotherapy 6/1/2012 Navelbine (vinorelbine) Chemotherapy 5/1/2013 Gemzar (gemcitabine) Hormonal Therapy 6/1/2013 Aromasin (exemestane) Targeted Therapy 8/1/2013 Afinitor (everolimus) Chemotherapy 10/28/2013 Halaven (eribulin) Chemotherapy 11/12/2014 Taxotere (docetaxel) Chemotherapy 10/1/2015 Adriamycin (doxorubicin) Targeted Therapy Ibrance (palbociclib)
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Jan 9, 2012 11:30AM china wrote:

Good Luck Ladies, I asked my onc nurse about it and she said if ever comes a time that I need this combo, hopefully my insurance will cover it. Wishing you both a great progression free year and then some!!!!! Dawn

Dx 4/6/2007, 1cm, Stage IV, Grade 3, mets, ER+/PR+, HER2-
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Jan 9, 2012 11:39AM KarmaKittie wrote:

Good luck to those of you on Afinitor! My mother's MD Anderson oncologist is involved in teh drug trials, and is very excited about this drug -- says she's seen it do wonders!

Mom's the patient. Liver mets on diagnosis. On Taxol/Herceptin since 9/09. Progression in liver - switched to Tykerb/Xeloda 1/12. Progression in liver -- starting Herceptin/Tykerb 12/12. Progression in liver, skull mets, starting Kadcyla/Zometa 3/13. Dx 7/30/2009, IDC, 2cm, Stage IV, Grade 3, 0/3 nodes, mets, ER-/PR-, HER2+
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Jan 9, 2012 11:44AM Frapp wrote:

Here's to a long comfortable run!!!!

Dx 12/24/2009, ILC, 6cm+, Stage IV, Grade 2, mets, ER+/PR+, HER2- Dx 12/19/2011, IDC, Stage IV, Grade 3, mets, ER+/PR-, HER2- Dx 9/28/2012, 6cm+, Stage IV, Grade 3, mets, ER+/PR-, HER2- Surgery 11/2/2012 Mastectomy: Left, Right Targeted Therapy 12/20/2012 Afinitor (everolimus)
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Jan 9, 2012 12:02PM Iwillwinthisbattle wrote:

Look forward to positive results from you!!! Please keep us posted!!

Stage IV IDC 4/2011. (2 small mets to back, 2 small mets to liver) ER/PR+, HER-, BRCA-. 6 doses of A/C-done-8//2011. 2/20/12---NED!!!! What an amazing gift!!! Fighting hard to win this battle!!! Enough with awareness, it's time for a cure!!!!
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Jan 9, 2012 12:25PM rkt wrote:

Question - what combos are being examined with afinitor?  I failed miserably on aromasin (new spots every time I had scans for 9 months before doctor switched my treatment).  So - from above I see combos of 1) faslodex and afinitor and 2) aromasin and afinitor.  Any other combos that folks are in clinical trials are getting? 

Thanks,

Becky

Becky, Stage IV, bone mets, ER+/PR+, HER2-, diagnosed June 2008, right mastectomy May 2009, 0/13 nodes, pleural effusion May 2011, mets to liver October 2011
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Jan 9, 2012 12:29PM Chickadee wrote:

I have no information in other clinical trials.  Maybe your onc. could track something down for you.  I won't be surprised if oncs trial different AI's with Evrolimus.  The Bolero2 trials were Aromasin/Evrolimus.  At this point that trial ended because of its success.  I am taking Evrolimus under my oncs supervision and not as part of any trial.

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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Jan 9, 2012 12:45PM pharmgirl wrote:

Hi!  I just wanted to say that I have been on the combination of Afinitor and Arimidex (not aromasin) for 10 months.  I am in a phase 1 clinical trial at MD Anderson.  I've had GREAT results with minimal side effects, but I am also only on the 5mg dose.  The Bolero trial was with 10mg.  I LOVE, LOVE, LOVE this combination. It has done wonders for me and my liver mets.  So great I am scheduled for a liver resection at MD Anderson in February.  Getting insurance to approve the Afinitor has been a problem for a lot of women in the phase 1 clinical trial I am in (it's an MDA trial not a drug company trial so the drug is not free).  Remember if the insurance denies coverage you can appeal by sending oncologist letters of medical necessity, copies of trial results, etc.  Also you can write to the Medical Director of the insurance company.   The more we put pressure on the insurance companies with physician letters, etc, the more likely they will start approving it.  

Diagnosis: 8/13/09, IDC, 6cm, Stage IV, mets to liver, ER +, PR +, HER2 -
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Jan 9, 2012 01:29PM lulubee wrote:

Chickadee, are mouth sores and nausea listed as common side effects?

Mercy, Courage, Grace. 1st DX 8/07: ILC & IDC, multi-focal/multicentric, ER+PR+ Her2-, 0/3 nodes. BMX+lat flap. 10/10: STAGE IV extensive ILC bone mets. Currently NED/stable on Xeloda (4th line since 10/2010). Surgery 9/6/2007 Lymph node removal: Left; Mastectomy: Left, Right; Prophylactic mastectomy: Right; Reconstruction (left): Latissimus dorsi flap, Tissue expander placement; Reconstruction (right): Latissimus dorsi flap, Tissue expander placement Hormonal Therapy 11/6/2010 Femara (letrozole) Surgery 11/6/2010 Prophylactic ovary removal Hormonal Therapy 2/1/2012 Faslodex (fulvestrant) Hormonal Therapy 5/15/2012 Aromasin (exemestane) Targeted Therapy 5/15/2012 Afinitor (everolimus) Chemotherapy 10/1/2013 Xeloda (capecitabine)
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Jan 9, 2012 01:54PM ksingh0 wrote:

I am on this exact combo. So far I love it. I have been on it or 6 weeks and it seems to be working. My onc was worried I wouldn't make XMas and only gave me weeks when I started this combo as a "Hail Mary" (as the onc said). I am feeling the best I ever have!!

Kelly Dx 5/17/2010, Stage IV, Grade 3, ER+/PR+, HER2-
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Jan 9, 2012 08:15PM Heidihill wrote:

ksingh0, that is so wonderful!! I've got tears welling up.

All the best to everyone!

Dx 8/2007, IDC, Left, 2cm, Stage IV, Grade 2, 2/19 nodes, mets, ER+/PR+, HER2- (FISH) Hormonal Therapy 3/25/2015 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jan 9, 2012 10:38PM mkkjd60 wrote:

Pharm, a resection! What good news! Can you tell me the kind of liver shrinkage you have experienced? I don't think my mom who is 72 could do a resection but this combo sounds miraculous. Thanks and much luck with the surgery. Mary

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Jan 10, 2012 12:38AM lulubee wrote:

ksingh0 -- that makes me SO HAPPY!  What joyful news!

Mercy, Courage, Grace. 1st DX 8/07: ILC & IDC, multi-focal/multicentric, ER+PR+ Her2-, 0/3 nodes. BMX+lat flap. 10/10: STAGE IV extensive ILC bone mets. Currently NED/stable on Xeloda (4th line since 10/2010). Surgery 9/6/2007 Lymph node removal: Left; Mastectomy: Left, Right; Prophylactic mastectomy: Right; Reconstruction (left): Latissimus dorsi flap, Tissue expander placement; Reconstruction (right): Latissimus dorsi flap, Tissue expander placement Hormonal Therapy 11/6/2010 Femara (letrozole) Surgery 11/6/2010 Prophylactic ovary removal Hormonal Therapy 2/1/2012 Faslodex (fulvestrant) Hormonal Therapy 5/15/2012 Aromasin (exemestane) Targeted Therapy 5/15/2012 Afinitor (everolimus) Chemotherapy 10/1/2013 Xeloda (capecitabine)
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Jan 10, 2012 02:56AM Chickadee wrote:

Lulube, yes mouth sores were the most common side effect.

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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Jan 10, 2012 04:23AM deenah wrote:

I am so excited to see others on Afinitor!  I hope to be starting this drug (if insurance approves it) this week.  I will be taking it with Herceptin/Tykerb since I am ER/PR- and HER2+.

I do have a question about managing the mouth sores.  Do you start using the mouth washes right from the start, or do you wait until you have signs of sores?  I would love to do something preventative.  My Intergrative doc mentioned that Curcumin could help prevent as well.  I need to get more info on that if I do get the drug.

www.caringbridge.org/visit/dee... Dx 3/22/2010, IDC, 6cm+, Stage IV, Grade 3, 18/40 nodes, ER-/PR-, HER2+
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Jan 10, 2012 09:33AM pharmgirl wrote:

Mary,

They tell me that I have had a 51% reduction in my large liver lesion.  Basically its gone from around 8cm down to about 2.5 cm?  Something like that.  I think liver resection is still somewhat controversial, but they say that I'm a candidate and I have decided to try it.

As far as mouth sores, my breast oncologist who was involoved with Bolero trial told me to either put the tablet in a small marshmellow or cover it with whipcream.  I've been using the marshmellows and it worked.  I also think that when I did get mouth sores it was when my ANC and WBC was low.  There for a few months I was getting a lot of Neulasta shots.  

Diagnosis: 8/13/09, IDC, 6cm, Stage IV, mets to liver, ER +, PR +, HER2 -
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Jan 10, 2012 09:55AM Chickadee wrote:

I'm trying to figure out why coating the medication prevented mouth sores. It's like saying the med introduced the bacteria that triggered the sores . I assumed the sores were related to a less efficient immune system.

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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Jan 10, 2012 10:06AM pharmgirl wrote:

I was wondering the same thing. I think the coating of the tablet may be the problem or something like that?  I'm not sure.  All I know is that I was having tongue sores which are way more painful that mouth sores and when I started putting the tablet in a marshmellow the sores stopped.  Call it placebo effect or whatever, but it worked for me.  I only had one little mouth sore since and it was when I had a low ANC and WBC but it was nothing compared to the tongue thing.  

Diagnosis: 8/13/09, IDC, 6cm, Stage IV, mets to liver, ER +, PR +, HER2 -
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Jan 10, 2012 10:29AM PJB wrote:

Love this thread. If Faslodex proves to not be working when I have scans next week, I'm going to definitely ask about adding this or combo'ing it with Arimidex (the only other AI I haven't had). I really like being off chemo after more than 2 years on it. :)

Thanks to those of you on this drug for sharing.  

May 2004, Stage 2 IDC. Recurrence in 2005. On Femara til mets diagnosis in Feb 2009. On Faslodex 8/11. Brain mets in April 2012. Progression in liver 6/12. On to Etoposide. Dx mets, ER+/PR+, HER2-
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Jan 11, 2012 04:57AM Chickadee wrote:

Some small SE's. Mild night sweats last night. Mild diarrhea today. At least that counteracts the oxycodone constipation. During the night I thought I sensed some mild pressure around my eyes, but I don't sense it now.

Going to radiation oncologist again tomorrow to make plans to get this back pain in hand. Pretty sure radiation is the likely solution.

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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Jan 12, 2012 05:35AM mindfulness wrote:

Hello ladies,
My insurance, Anthem Blue cross has denied my Onc's request to use this drug off label. If you don't mind I like to know the name of insurance companies that have agreed to pay for this drug so I can appeal Blue Cross's denial. You can always pm me if you prefer.
Love to all.

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 Dx 5/18/2009, 3cm, Stage IV, mets, ER+/PR-, HER2-
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Jan 12, 2012 07:14AM sandilee wrote:

Boo, Anthem.  I have them as well.  I'm sorry to hear this.  I'd love to know which insurance companies are approving the drug. It would even help our docs to know when they are talking to the insurance companies for approval.

- 4/2015- Mets to liver. 6/2011-Mets to spine, ribs, and skull, 6/2011 radiation, Xgeva and Faslodex 7/2011 Dx 11/2007, IDC, 1cm, Stage IA, Grade 2, 0/6 nodes, ER+/PR-, HER2- Hormonal Therapy 1/10/2008 Aromasin (exemestane) Dx 6/2011, IDC, mets Radiation Therapy 6/30/2011 Bone Hormonal Therapy 7/15/2011 Faslodex (fulvestrant) Hormonal Therapy 4/10/2015 Femara (letrozole) Targeted Therapy 4/20/2015 Ibrance (palbociclib) Chemotherapy 8/3/2015 Xeloda (capecitabine) Hormonal Therapy 3/11/2016 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jan 12, 2012 10:37AM - edited Jan 13, 2012 03:18AM by Chickadee

I think it's also important to note that my approval may well be tied to my former employers HR decisions when it comes to these issues. My approval might be someone else's rejection by the same two companies depending on the employers decision.

Let me. Add a good SE. Appetite suppressant. I'm happy with small meals and don't feel a need to go foraging for snacks. Now I hope this holds.

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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Jan 12, 2012 10:45AM Frapp wrote:

I WANT that se!!!!

Dx 12/24/2009, ILC, 6cm+, Stage IV, Grade 2, mets, ER+/PR+, HER2- Dx 12/19/2011, IDC, Stage IV, Grade 3, mets, ER+/PR-, HER2- Dx 9/28/2012, 6cm+, Stage IV, Grade 3, mets, ER+/PR-, HER2- Surgery 11/2/2012 Mastectomy: Left, Right Targeted Therapy 12/20/2012 Afinitor (everolimus)
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Jan 12, 2012 10:46AM Chickadee wrote:

I wonder the more expeditious route is to get the FDA To fast track the approval for breast cancer.

Saw the rad onc today, CT on Friday with the tattoos and, nothing indicating otherwise its back to the rad table for 20 sessions.

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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Jan 12, 2012 11:39AM china wrote:

Sandilee, I have BC/BS and they won't even cover me for a nausea patch that you can wear for 5-7 days. I have to fail Kytril and Zofran. I had to get letters from my onc for Zometa because I was allergic to Aredia. Love the insurance companies that decide our health issues!

Chicadee, Maybe it is the pills coating that stays on the tongue and causes the mouth sores like certain antibiotics that are coated and can cause thrush such as Bactrim DS. Do you take the Affinitor every day? I was thinking of your mini marshmellow and if you swallow enough whole....you may see the giant Jet puff man from Ghostbusters! HeHe. glad your SE's are not terrible. Hang in there sweetie. Dawn

Dx 4/6/2007, 1cm, Stage IV, Grade 3, mets, ER+/PR+, HER2-
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Jan 12, 2012 01:20PM pharmgirl wrote:

I also have Aetna, but I think my employer is "self pay" or "self insured" so I'm sure it's different than many other people who have Aetna coverage.  I will say that when the business person at MD Anderson came to tell me that the Afinitor was covered, they looked at me like it was a total shock, especially that I only had a $20 copay.  This drug is $10,000 a month by the way.  They also told me that so many people have been denied and I think I was the second patient that was covered.  I was there the next month in the waiting room when another patient found out they weren't covered and they were really upset and loud and I tried to help calm them down.  The patient had Medicare with a really good supplement, but they wouldn't cover it.  I was really bummed that day.  

On another note, I really hope and pray that the FDA fast tracks this med, but then again they fast tracked Avastin and look what happened.  I'm so afraid they won't be as likely to fast track other drugs now.  I hope I'm really wrong about this.

Diagnosis: 8/13/09, IDC, 6cm, Stage IV, mets to liver, ER +, PR +, HER2 -
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Jan 12, 2012 02:17PM nancyh wrote:

Mindfulness,

I'm really sorry about Anthem, shame on them!!  I will find out tomorrow if my insurance has approved my Afinitor, I'm crossing fingers and toes they do.  If they do, I will let you know.  We will do everything possible to support your fight to get this approved.  I've heard that if you can find the name of the pharmacy director at your insurance company and try to write a personal appeal you might be able to overturn their decision.  Another thought is go to local media to see if you can get them to help you.  

With any luck, I'll get my Afinitor and first faslodex tomorrow! 

Stage 4 in 2009, mets to liver, lungs, bones, and brain. Dx 8/12/2002, IDC, 1cm, Stage IIB, 3/12 nodes, ER+/PR+, HER2- Chemotherapy 10/1/2002 AC Chemotherapy 1/1/2003 Taxol (paclitaxel) Hormonal Therapy 5/1/2003 Dx 4/2/2007, IDC, 1cm, Stage II, ER+/PR+, HER2- Chemotherapy 6/1/2007 CMF Dx 9/1/2009, IDC, Stage IV, metastasized to brain/bone/liver/lungs, mets, ER+/PR+, HER2- Targeted Therapy 9/1/2009 Avastin (bevacizumab) Chemotherapy 9/1/2009 Abraxane (albumin-bound or nab-paclitaxel) Hormonal Therapy 6/1/2010 Femara (letrozole) Chemotherapy 9/1/2011 Xeloda (capecitabine) Hormonal Therapy 1/1/2012 Faslodex (fulvestrant) Chemotherapy 6/1/2012 Navelbine (vinorelbine) Chemotherapy 5/1/2013 Gemzar (gemcitabine) Hormonal Therapy 6/1/2013 Aromasin (exemestane) Targeted Therapy 8/1/2013 Afinitor (everolimus) Chemotherapy 10/28/2013 Halaven (eribulin) Chemotherapy 11/12/2014 Taxotere (docetaxel) Chemotherapy 10/1/2015 Adriamycin (doxorubicin) Targeted Therapy Ibrance (palbociclib)
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Jan 12, 2012 02:48PM scuttlers wrote:

This brings a good point to light. If you are on Medicare or going on - be sure to go to the Medicare sight and put in your drugs to make sure they will be covered before signing with a supplement plan. Same with your doctors and hospital facilities. I also have been putting in any drugs that I may be taking in the future. (including chemo drugs). Ask your facilities if they take that supplement.

I will be going on Medicare in September, so have been diligently working with all my doctors and facilities including MD Anderson to make sure my care can continue with them. MD Anderson requires the PFFS plan which narrows the field a LOT. And the drugs, you can input them and see if they are covered. You would be surprised, even IF the drug is on their list - sometimes they limit the amount you can get per month. Say for example: I take 4 Tykerb per day, a months supply is 120 tablets. A few supplements I checked approve Tykerb - but only allow 30 tablets each month to be covered.

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

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