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Topic: Ibrance (Palbociclib)

Forum: Stage IV/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 24, 2015 08:21PM - edited Dec 11, 2017 01:43PM by Moderators

Romansma wrote:

A bottle of Ibrance came in the mail today. I will start taking it tonight with Femara. Hoping that others starting on this drug will join me here to talk about side effects and how to avoid or treat them. So far, I've been warned about low white counts. I run very low as it is, probably because of my extensive bone mets. Anyone currently on Ibrance?

Edited by Mods to add Mod Note: Unfortunately, Romansma passed away in 2016. Our thoughts are with all who loved Hope.

Edited by Mods to add:

For more information on this medication, see the main Breastcancer.org site's section on Ibrance for information on how it works, who it's for, what to expect, and side effects. Also, read the latest research on the Research News on Ibrance pages.

Pfizer Oncology Together is a first-of-its-kind program for patients taking Pfizer Oncology medicines that offers dedicated social workers called 'Care Champions' to help navigate the complexities that accompany treatment, such as identifying resources to help find emotional support, and workplace transition, transportation and financial assistance.

For cancer patients taking a Pfizer Oncology medicine (e.g. Ibrance) or caregivers, please visit www.PfizerOncologyTogether.com.

For live support call: 1-877-744-5675

Hope Dx 10/22/2010, ILC, Right, 6cm+, Stage IIIB, Grade 2, 9/10 nodes, ER+/PR+, HER2- (FISH) Chemotherapy 11/1/2010 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel) Chemotherapy 4/1/2011 Abraxane (albumin-bound or nab-paclitaxel), Cytoxan (cyclophosphamide) Radiation Therapy 6/8/2011 Whole-breast: Breast, Lymph nodes, Chest wall Surgery 11/29/2011 Prophylactic ovary removal Dx 8/2013, ILC, Stage IV, mets, ER+/PR-, HER2- (FISH) Hormonal Therapy 9/17/2013 Faslodex (fulvestrant) Targeted Therapy 1/25/2014 Afinitor (everolimus) Radiation Therapy 2/11/2014 External: Bone Chemotherapy 12/6/2014 Xeloda (capecitabine) Hormonal Therapy 2/20/2015 Femara (letrozole) Targeted Therapy 2/20/2015 Ibrance (palbociclib)
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Jan 10, 2020 10:11PM GinnyO2 wrote:

Hi Jaycee, I need to make a correction. I don’t have RXAssured for my pharmacy. I have Rx To Go. its an in-house pharmacy with Florida Cancer Specialists. There’s a a few of these centers around the State. I bet they use that “ FundFinder” for their patients !
Good info for everyone on this site. I’m going to look into getting assistance for my Fulvestrant as financial person thought I made too much but now I wonder. Fulvestrant comes from another pharmacy.....I believe. I’ll keep you up on what I find and I’ll use your site to look as well!
Thanks !

Virginia Dx 5/20/2019, IDC, Left, Stage IV, metastasized to lungs, Grade 3, ER+/PR+, HER2- (IHC)
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Jan 10, 2020 10:42PM JACK5IE wrote:

Thanks Cure-ious and Ginny!

Dx 7/2009, IDC, Left, Stage IIB, Grade 2, 4/11 nodes, ER+/PR+, HER2- Dx 12/2017, Stage IV, metastasized to bone, ER+/PR+, HER2- Radiation Therapy External: Bone Targeted Therapy Ibrance (palbociclib) Hormonal Therapy Faslodex (fulvestrant) Surgery Lymph node removal; Mastectomy: Left Radiation Therapy Whole-breast: Breast, Lymph nodes Chemotherapy TAC Surgery Lumpectomy: Left
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Jan 10, 2020 11:06PM - edited Jan 10, 2020 11:06PM by PatgMc

Anne Loeser's summary of the San Antonio Breast Cancer Symposium 2019:

https://60e45cf9-3a4d-4d1d-b51e-4322d6e4661b.files...

PatGMc Dx 2/1994, IDC, Left, 4cm, Stage IIB, Grade 3, 0/15 nodes, ER-/PR- Dx 3/2002, IDC, Right, <1cm, Stage IA, Grade 1, 0/3 nodes, ER+/PR+, HER2+ (FISH) Dx 3/2012, IDC, Right, 4cm, Grade 3, ER+/PR+, HER2- Dx 9/2016, IDC, 0/16 nodes, ER+/PR+, HER2- Targeted Therapy 10/1/2016 Ibrance (palbociclib) Surgery Lymph node removal; Mastectomy; Reconstruction (left): Pedicled TRAM flap Chemotherapy FAC Chemotherapy Carboplatin (Paraplatin), Taxol (paclitaxel) Surgery Lymph node removal; Mastectomy; Reconstruction (right): Tissue expander placement
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Jan 11, 2020 08:00AM BevJen wrote:

Hi, Pat!

Good to see you here -- hope you are doing well.

That summary from Anne (Bestbird) is really terrific.

Dx 11/2003, ILC, Left, Stage IIIC, ER+/PR+, HER2- Dx 6/2006, ILC, Stage IV, metastasized to other, ER+ Dx 5/2019, ILC, Stage IV, metastasized to liver, ER+/PR+, HER2- Surgery 7/5/2019 Targeted Therapy 8/1/2019 Ibrance (palbociclib) Hormonal Therapy Faslodex (fulvestrant) Hormonal Therapy Femara (letrozole) Surgery Lymph node removal; Mastectomy; Reconstruction (left): Pedicled TRAM flap; Reconstruction (right): Pedicled TRAM flap Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy Chemotherapy TAC Surgery Lymph node removal: Left, Sentinel; Mastectomy: Left, Right; Reconstruction (left): Pedicled TRAM flap; Reconstruction (right): Pedicled TRAM flap
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Jan 11, 2020 08:41AM - edited Jan 11, 2020 08:41AM by RadagastRabbit

Congrats on the A+ news Jack5ie!!! Woo hoo!!! :)

Mets found @ Rads planning. Mets to L/R Pelvis, L/R Trochanter/SI Joint, Ribs, T. Spine, L. Spine, Sternum, Sacrum. MyRisk neg."Courage of the heart is very rare, there's a power when its there" 37yrs old at IV DX. lifeandirises.home.blog/ Dx 7/30/2018, IDC, Right, 4cm, Stage IIB, Grade 2, ER+/PR+, HER2- Hormonal Therapy 9/27/2018 Zoladex (goserelin) Chemotherapy 9/27/2018 AC + T (Taxol) Dx 4/19/2019, IDC, Right, 3cm, Stage IIB, Grade 2, 5/16 nodes, ER+/PR+, HER2- (IHC) Surgery 4/19/2019 Lymph node removal: Right, Sentinel, Underarm/Axillary; Mastectomy: Right Hormonal Therapy 5/14/2019 Zoladex (goserelin) Dx 5/17/2019, IDC, Right, Stage IV, metastasized to bone, ER+/PR+, HER2- (IHC) Surgery 10/2/2019 Prophylactic ovary removal Targeted Therapy Ibrance (palbociclib) Hormonal Therapy Aromasin (exemestane)
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Jan 11, 2020 08:55AM denny10 wrote:

Hi Pat, always good to hear from you.

Thank you for the link to the summary, so many possibilities, it gives me hope. I am going to give the summary to my breast cancer care nurse, she is always interested in information I gain from this site and what's ahead, but doesn't have time to research -too busy keeping up with current treatments.

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Jan 11, 2020 12:32PM BlueGirlRedState wrote:

denny10, thank you for the fart. Still laughing. Did not play on pinterest, but did open in YouTube. I'll blame the hippos the next trime rather than the cat or dog.

https://www.youtube.com/watch?v=PSKQ3ZNQ_O8

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Jan 11, 2020 05:10PM Faith-840 wrote:

Hi again everyone, well 4 years this January with MBC. I had good news, MO says my PET scan continues to look good.Thanks for the good wishes. That’s after about 20 months of IBrance and the rest of the time till now on only Letrozole. In fact, I started taking it only every other day about two months ago with my MO’s approval because of the side effects. I have more energy but still the aches and pains. The PET did show bursitis in hip and shoulder where most of pain is. Probably the result of normal aging. A previous MRI showed deterioration in spine at L 4 &5, probably contributing to my sciatica pain. Oh the joys of old age! But I’m still here!

It’s good to see old friends stopping in. PatgMc, I hope you are doing well on the new meds. You have been such a wonderful cheerleader for all of us.

Jaycee, hope you get equally good results on your PET too. I’m sure everyone appreciates the knowledge you share on the financial business of this awful disease. It’s enough to worry about our treatment and tests and then having to worry about how to pay for all this can drive you mad.

Lynn, so glad to see you again and here that you are still stable and sailing. Keep checking back in and share some photos of your next trip on the water.

Congratulations Jack51E on your great scan.

Intolight, hope you can change to 100 mg Ibrance and that your virus clears up ASAP! It’s been much too long. Maybe the drop in dose will help.

Love and prayers to all of you, stay strong!

Faith (in the future

Faith Dx 1/1991, Left, Stage IIIB, 8/26 nodes, ER+/PR+, HER2- Surgery 1/4/1991 Lumpectomy: Left Surgery 2/3/1991 Mastectomy: Left Dx 1/2016, ILC, Left, 6cm+, Stage IV, metastasized to lungs, ER+/PR+, HER2- (FISH) Hormonal Therapy 1/22/2016 Femara (letrozole) Targeted Therapy 1/23/2016 Ibrance (palbociclib) Surgery Reconstruction (left): Nipple reconstruction, Nipple tattoo, Silicone implant, Tissue expander placement Chemotherapy CAF Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jan 12, 2020 01:42AM Brenniejoyce wrote:

I was taken off of Ibrance this week because I developed pneumonitis. I've just been through several days of hell because I feel like there aren't many options of what to do now. My oncologist says we will continue with the Faslodex, and he sent in a sample of my original tumors frommy breast to a lab to see if I have the gene mutation so I can take Piqray. I don't know what will happen if I don't have the gene mutation. My husband and I are crying constantly because we don't feel a whole lot of hope right now. I have bone mets and I am in a lot of pain that is partially controlled by Dilaudid. I'm just wondering if there are other people out there in my position. How are you handling the situation? I'm scheduled to talk to my social worker on Monday from palliative care, but I am really struggling right now.

Dx 12/18/2017, IDC/IDC: Cribriform, Left, Stage IIA, Grade 2, 0/3 nodes, ER+, HER2- (IHC) Surgery 1/2/2018 Lymph node removal: Sentinel, Underarm/Axillary; Mastectomy: Left Chemotherapy 2/11/2018 AC + T (Taxol) Hormonal Therapy 10/1/2018 Arimidex (anastrozole) Surgery 10/18/2018 Reconstruction (left): Tissue expander placement Surgery 4/9/2019 Prophylactic mastectomy: Right; Reconstruction (right): Tissue expander placement Dx 11/1/2019, DCIS/IDC, Left, Stage IV, metastasized to bone, 0/4 nodes, ER+, HER2- Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jan 12, 2020 07:44AM BevJen wrote:

Dear BrennieJoyce,

What about the other drugs in the same "class" as Ibrance? Verzenio or Kisqali? Can you talk with your MO about those? I don't think the entire class has the same risk of pneumonitis, but I haven't researched it. Also, there are other drugs available through clinical trials or possibly compassionate use. Please don't despair! One suggestion I have is that you may want to get a second opinion from another MO, preferably at a large academic center, that is NCI-designated. Good luck.

Dx 11/2003, ILC, Left, Stage IIIC, ER+/PR+, HER2- Dx 6/2006, ILC, Stage IV, metastasized to other, ER+ Dx 5/2019, ILC, Stage IV, metastasized to liver, ER+/PR+, HER2- Surgery 7/5/2019 Targeted Therapy 8/1/2019 Ibrance (palbociclib) Hormonal Therapy Faslodex (fulvestrant) Hormonal Therapy Femara (letrozole) Surgery Lymph node removal; Mastectomy; Reconstruction (left): Pedicled TRAM flap; Reconstruction (right): Pedicled TRAM flap Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy Chemotherapy TAC Surgery Lymph node removal: Left, Sentinel; Mastectomy: Left, Right; Reconstruction (left): Pedicled TRAM flap; Reconstruction (right): Pedicled TRAM flap
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Jan 12, 2020 09:49AM - edited Jan 12, 2020 11:02AM by jaycee49

What about Afinitor? What about Xeloda? My non-oncologist mind came up with those two while I ate breakfast. And your mets may not be the same as your original tumor. What about radiation for the pain? You may need a second opinion.

Janet (dx with MS at 41, slows me down some) Dx 4/25/2014, IDC, 3cm, Stage IIB, Grade 2, 1/18 nodes, ER+/PR+, HER2+ Surgery 6/4/2014 Lymph node removal: Left, Sentinel, Underarm/Axillary; Mastectomy: Left Targeted Therapy 8/4/2014 Herceptin (trastuzumab) Chemotherapy 8/4/2014 Carboplatin (Paraplatin), Taxotere (docetaxel) Radiation Therapy 10/1/2014 Chest wall Hormonal Therapy 2/14/2015 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 3/25/2016, IDC, Left, Stage IV, metastasized to bone/lungs, Grade 2, 1/18 nodes, ER+/PR+, HER2- (FISH) Hormonal Therapy 3/31/2016 Femara (letrozole) Targeted Therapy 3/31/2016 Ibrance (palbociclib)
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Jan 12, 2020 12:34PM Piggy99 wrote:

Brenniejoyce, it's very disappointing when you have to discontinue a promising treatment like Ibrance because of a serious side effect. Unfortunatelly, pneumonitis is a class-wide effect for CDK4//6 inhibitors, and your doctor might be reluctant to try one of the other agents, at least in the near future.

However, Faslodex can work on it's own for quite a while, so you have not "burned through" your first line of treatment at this time - hopefully your next set of scans show that Faslodex alone is keeping the mets under control, and you get to stay on it for a good long time. Even if that's not the case, as Jaycee mentioned, there are many other options left, even without starting to think about iv chemo. In the mean time, if your pain is severe, you can ask for palliative radiation to the painful spots, as BevJen suggested - this would give you relatively quick pain relief and allow some time for Faslodex to start working. It's very hard to have a positive outlook when you're in severe pain, and I hope that your medical team is proactive in dealing with the pain.

Diagnosed as Stage IV de novo at age 42. Dx 1/23/2018, ILC/IDC, Left, 6cm+, Stage IV, metastasized to bone, Grade 2, ER+/PR+, HER2- Hormonal Therapy 1/31/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Targeted Therapy 2/7/2018 Ibrance (palbociclib) Hormonal Therapy 3/30/2018 Femara (letrozole)
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Jan 12, 2020 12:55PM jaycee49 wrote:

Joyce, is your MO sure that the pneumonitis is caused by Ibrance? I've been reading about how it can be a DELAYED reaction to chemo. Like your earlier AC + T. How long have you been on Ibrance? It seems really short. Can pneumonitis happen that fast? Just some questions to consider. Please don't be discouraged. You have many options and time to think about them. Slow down and breathe.

Janet (dx with MS at 41, slows me down some) Dx 4/25/2014, IDC, 3cm, Stage IIB, Grade 2, 1/18 nodes, ER+/PR+, HER2+ Surgery 6/4/2014 Lymph node removal: Left, Sentinel, Underarm/Axillary; Mastectomy: Left Targeted Therapy 8/4/2014 Herceptin (trastuzumab) Chemotherapy 8/4/2014 Carboplatin (Paraplatin), Taxotere (docetaxel) Radiation Therapy 10/1/2014 Chest wall Hormonal Therapy 2/14/2015 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 3/25/2016, IDC, Left, Stage IV, metastasized to bone/lungs, Grade 2, 1/18 nodes, ER+/PR+, HER2- (FISH) Hormonal Therapy 3/31/2016 Femara (letrozole) Targeted Therapy 3/31/2016 Ibrance (palbociclib)
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Jan 12, 2020 12:56PM IntoLight wrote:

Brenniejoyce, I am saddened to hear of your development and I will pray the docs find the right medicine for you. The others are correct that there are so many other treatments out there. Hopefully there is one just right for you. Pallative care doesn't mean end care, it means treatment care, and we all deserve the most and best treatment and support possible.

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- Targeted Therapy Ibrance (palbociclib) Hormonal Therapy Femara (letrozole)
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Jan 12, 2020 02:31PM candy-678 wrote:

Hi all.

Just posting to say I am still here. I read all of your posts and I will chime in as needed. Started cycle 26 last week--woohoo. Scans in Feb--- no date yet, awaiting insurance approval.

Hugs to all.

Found mets on CT for unrelated issue. I only had 2 treatments with IV chemo, then switched to hormone therapy/targeted therapy. Also using Xgeva injections for bone mets Dx 6/2017, ILC/IDC, Left, 3cm, Stage IIB, Grade 3, 0/1 nodes, ER+/PR+, HER2- Dx 9/2017, ILC/IDC, Stage IV, metastasized to bone/liver, 0/1 nodes, ER+/PR+, HER2- Targeted Therapy Ibrance (palbociclib) Hormonal Therapy Femara (letrozole), Zoladex (goserelin) Chemotherapy AC Surgery Lymph node removal: Sentinel; Mastectomy: Left
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Jan 12, 2020 05:32PM airlinegal wrote:

Brenniejoyce when my first Onc left and she recommended the palliative Onc in the group. Was definitely concerned. As IntoLight said it doesn’t mean end care. The Pallative Onc was the best thing for me and I am so thankful for her. Hang in there and if necessary get a 2nd opinion. Will be saying prayers for you.
Dx 2000 Stage I left breast, lumpectomy, chemo, radiation, tamoxifen 5 yr Dx 2016 Stage IV metastasized to bone/lung. Hormonal Therapy Femara 5/1/16. Targeted Therapy Ibrance 5/1/16
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Jan 12, 2020 07:04PM JACK5IE wrote:

Thank you for all your well wishes!

Faith...so happy for your news as well!

Brenniejoyce...please try not to despair. There are other options out there. If need be, get a 2nd opinion. Even if only for peace of mind.

As always, you are all in my thoughts and prayers.

Dx 7/2009, IDC, Left, Stage IIB, Grade 2, 4/11 nodes, ER+/PR+, HER2- Dx 12/2017, Stage IV, metastasized to bone, ER+/PR+, HER2- Radiation Therapy External: Bone Targeted Therapy Ibrance (palbociclib) Hormonal Therapy Faslodex (fulvestrant) Surgery Lymph node removal; Mastectomy: Left Radiation Therapy Whole-breast: Breast, Lymph nodes Chemotherapy TAC Surgery Lumpectomy: Left
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Jan 12, 2020 08:04PM Simone80 wrote:

Congrats on the A+ Jackie!

Dx 7/2001, IDC, Right, 1cm, Stage IIIA, Grade 3, 7/13 nodes, ER+/PR+, HER2- Dx 1/2019, IDC, 1cm, Stage IV, metastasized to bone/other, ER+/PR+, HER2- (FISH) Hormonal Therapy Femara (letrozole) Targeted Therapy Ibrance (palbociclib)
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Jan 13, 2020 01:18AM LaurenH wrote:

Hello friends and happy new year! I just got caught up and I was so sad to see that Netta had some progression - and pain - if you are still reading - please know I am thinking of you!

I was so please to hear from old friends like Pat (big smiles for your check in posts) Jens, Philly, and Joyner (yay for good news and a new boat!) and super excited to read of Faith’s recent scans. So much hope here, I’ve really missed you all. And to all of you who posted funny flatulence humor, you made my day!

I am doing well now 2 years into my dx. I took a week off of Ibrance prior to having my wisdom tooth out last week and I will restart 1 week after. This is my first time off of Ibrance since I started and I haven’t noticed any change in side effects.... (though mine have never been awful) Maybe it’s just not enough time off or maybe Faslodex causes more than I realize. As an ONJ precaution, we only did 1 tooth so assuming this heals well, I will do the other 3 next. So far, so good.

BrenieJoyce - so sorry you are facing the fear of changing meds. The good news is that progression is NOT what’s causing this amd as others have said there are many other options for you. This feels like a good moment for a 2nd opinion. Sending you a big dose of HOPE - you have every reason to believe you will find a good solution here.

Jaycee - hoping you read about your good scan news next week!

Love to all,

Lauren

Dx 12/2002, IDC, Right, 1cm, Stage IIA, Grade 3, 1/23 nodes, ER+/PR+, HER2+ (FISH) Dx 2/15/2018, IDC, Left, Stage IV, ER+/PR-, HER2+ Targeted Therapy 2/21/2018 Herceptin (trastuzumab) Targeted Therapy 2/23/2018 Ibrance (palbociclib) Radiation Therapy 3/1/2018 External: Bone Hormonal Therapy Faslodex (fulvestrant) Hormonal Therapy Arimidex (anastrozole) Radiation Therapy Whole-breast: Breast, Lymph nodes Targeted Therapy Herceptin (trastuzumab) Chemotherapy AC + T (Taxotere) Surgery Lumpectomy: Right; Lymph node removal: Right, Sentinel, Underarm/Axillary
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Jan 13, 2020 10:35AM BLMike wrote:

I previously asked others here if they had experience going through the COBRA insurance process. Unfortunately, apparently no one did. As a result, I thought I'd provide an update of what we're going through. It's not been fun especially given the high cost of Ibrance!

Obviously, her old company has to send her the COBRA application in order for her to start COBRA. We tried to expedite this, but they said they can't send her the application until after her termination from the company. Although she retired at the end of the year, she still hasn't received the COBRA application. After she fills that out, she'll have to wait for approval from the 3rd party who implements COBRA for the insurance company. This will likely take weeks. Once approved, her insurance will be retroactive to her last day of work (along with our premiums), but in the meantime, it appears to medical providers as though we have no insurance.

So far, it's been quite difficult and costly. We ordered her next cycle of Ibrance, but had to pay out of pocket for that. The cost was also $3,000 more than what the insurance company has been paying. Once she's approved and on COBRA, we can submit a claim for it, but it's not clear to me if we'll be reimbursed for the difference between what the insurance company has been paying and what we had to pay (the $3,000).

Then today we had an oncologist appointment to verify her blood work was OK to start the next cycle. Their initial position was that since we don't have insurance (yet), we have to delay the blood work and exam, which, of course, would delay her next cycle indefinitely. We pushed back on this and finally, they agreed to charge us for the visit (and the blood work), and we'll just have to fight it out with the insurance company once eventually COBRA kicks in retroactively to January 1, 2020.

All of this is requiring an awful lot of out of pocket expenses with no guarantee that the difference between what the insurance has negotiated and normally pays and what we have to pay will be reimbursed. We tried unsuccessfully to coordinate all this ahead of time with her former employer, the insurance company, the 3rd party COBRA administrator, and her Ibrance pharmacy, but simply got the run-around. This seems like a huge problem especially for expensive life-critical drugs such as Ibrance. I just thought I'd let folks know what we're going through. I'll provide a separate update when we have to submit all of these out of pocket expenses to the insurance company.

A member to gather information for my wife Dx 2009, DCIS, Stage 0, ER+/PR+, HER2- Dx 2016, IDC, Stage IA, 0/5 nodes, ER+/PR+, HER2- Dx 4/20/2019, IDC, Stage IV, metastasized to lungs, ER+/PR+, HER2- Hormonal Therapy Femara (letrozole) Targeted Therapy Ibrance (palbociclib) Radiation Therapy Breast Surgery Lumpectomy; Lymph node removal: Underarm/Axillary
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Jan 13, 2020 10:49AM BevJen wrote:

BLMike,

This is a ridiculous story. I would find out the telephone number of your state's insurance commission and promptly call them and tell them this saga. I don't know where you live, but they should be able to help you.


Dx 11/2003, ILC, Left, Stage IIIC, ER+/PR+, HER2- Dx 6/2006, ILC, Stage IV, metastasized to other, ER+ Dx 5/2019, ILC, Stage IV, metastasized to liver, ER+/PR+, HER2- Surgery 7/5/2019 Targeted Therapy 8/1/2019 Ibrance (palbociclib) Hormonal Therapy Faslodex (fulvestrant) Hormonal Therapy Femara (letrozole) Surgery Lymph node removal; Mastectomy; Reconstruction (left): Pedicled TRAM flap; Reconstruction (right): Pedicled TRAM flap Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy Chemotherapy TAC Surgery Lymph node removal: Left, Sentinel; Mastectomy: Left, Right; Reconstruction (left): Pedicled TRAM flap; Reconstruction (right): Pedicled TRAM flap
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Jan 13, 2020 11:28AM IntoLight wrote:

BLMike, that is indeed a crazy story filled with mounds of frustration. Our system is indeed a mess...

Lauren, so glad you checked in and are doing well with your tooth. Hoping the others go as smooth.

Those battling the freeze and new rounds of storms, stay safe today.

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- Targeted Therapy Ibrance (palbociclib) Hormonal Therapy Femara (letrozole)
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Jan 13, 2020 07:21PM WANDERING wrote:

Hello ladies and gents. I'm not making any progress on the jaw bone that is deteriorating. Saw the oral surgeon last week. He has set me up for a hospital visit the first of March. He is planning on operating and removing some more jaw bone at that time. No idea what the outcome will be but always can be optimistic. Right now I'm taking lots of pain pills, salt water rinse and oral rinse. A very bothersome thing is the odor in my mouth which I cannot seem to get under control. Any ideas on what to use would be very much appreciated. The rinses don't seem to be helping and honestly it's disgusting.

Dx 9/7/2013, Left, Stage IV, metastasized to bone, ER+, HER2+ Targeted Therapy Ibrance (palbociclib) Targeted Therapy Ibrance (palbociclib)
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Jan 13, 2020 07:24PM Karenfizedbo15 wrote:

Mike... what a shocker! I know we have the NHS here in Scotland and Ibrance was cleared in Dec 2017 for use in the system, from which I currently benefit. However I also have private insurance cover with BUPA. At no point would we be in your situation even although I have previously had to fight for cover for reconstructive surgery and the like. It is to your wife’s benefit that you are able to fight her corner intelligently. Good luck with that ... and I feel like saying - ask them what it would be like if it was their wife, daughter, sister, mother or indeed father, brother in this situation. You are seriously under the cosh and someone needs to cut you a break. In fact I did that with Bupa 12 years ago on my surgeon’s advice and they did actually cut me a big break in terms of cover continuity. Worth a try?

Surgery 9/8/2007 Lymph node removal: Underarm/Axillary; Mastectomy: Right; Reconstruction (right): Latissimus dorsi flap Dx 4/2018, IDC, Right, Stage IV, metastasized to lungs, 1/17 nodes, ER+/PR+, HER2-
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Jan 13, 2020 08:16PM Simone80 wrote:

Hi Wandering,

I just developed ONJ. I don't have any recommendations for that as I am just starting to deal with it. I did find another thread that talks about it. There are a few ladies that posted, maybe one of them has a suggestion.

https://community.breastcancer.org/forum/8/topics/870698?page=1#idx_7

Dx 7/2001, IDC, Right, 1cm, Stage IIIA, Grade 3, 7/13 nodes, ER+/PR+, HER2- Dx 1/2019, IDC, 1cm, Stage IV, metastasized to bone/other, ER+/PR+, HER2- (FISH) Hormonal Therapy Femara (letrozole) Targeted Therapy Ibrance (palbociclib)
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Jan 13, 2020 11:44PM SerenitySTAT wrote:

Wandering - I don't know if this would help, but I use a mix of salt, baking soda, and peppermint oil (just a few drops) to prevent mouth sores. I know there's too much oil if it's uncomfortable to gargle with it.

Yesterday I started cycle 2 of Ibrance at 125 mg. My TMs have dropped, but still very high. I do have fatigue and more joint pain, but the worst side effect has been a rash during the off week. It started the day after I missed taking an antihistamine, and it's now subsiding. My WBC/ANC were very low at 2.9/0.5, but my MO didn't delay the next cycle or drop the dosage. My other counts were normal. Guess we'll see how the next few weeks go. If the rash returns, my MO said he might switch meds. I don't plan on skipping the antihistamine anymore.

"Do not overlook the little joys!" (Hesse, 1905) 🐶☕️🛀🖼🥐🌲🎭 Dx 11/2015 IDC Left IIIC 10/11 nodes ER+PR+HER2-, 12/2015 Left Mast, 2/2016 4 AC+12 Taxol, 9/2016 Rads Nodes Chest wall 15+4 boosts, 10/2016 Tamox, 4/2019 Exemestane, 12/2019 Ibrance/Xgeva
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Jan 14, 2020 10:25AM Simone80 wrote:

Hi Serenity,

I found Turkey tail to help with the wbc counts. The cancer center NP prescribed it as it seems to help cancer patients. It's kinda of pricey. I think any of the medical mushrooms would help though.

You might want to consider getting a second opinion if your MO wants to take you off of ibrance for something other than progression. This combo has worked so long for quite a few ladies.

Dx 7/2001, IDC, Right, 1cm, Stage IIIA, Grade 3, 7/13 nodes, ER+/PR+, HER2- Dx 1/2019, IDC, 1cm, Stage IV, metastasized to bone/other, ER+/PR+, HER2- (FISH) Hormonal Therapy Femara (letrozole) Targeted Therapy Ibrance (palbociclib)
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Jan 14, 2020 11:42AM - edited Jan 14, 2020 11:47AM by vfp

Hi folks. I am so glad that I found this forum. I will certainly be following it closely and will share my experiences.

I am currently on my second cycle of Ibrance/letrosole and so far I have had minimal side effect. I do get tired and my hair does seem to be thinning. It is winter and I don't know if the loss of hair is from the dry air or because of the treatment.

I have been diagnosed with Stage IV metastatic cancer as there is a mass on my left lung. I did have a bronchoscopy last month. My pulmonologist didn't see cancer in the samples, but the radiologist wants to classify it as inconclusive. I could have another biopsy that is risky, but I decided to start treatment instead. All the doctors feel that is the mass is malignant iti is most likely breast cancer rather than lung cancer. I will make a decision about having this biopsy when I have my scans in two months. If the mass has not changed, then I will have the biopsy.

Keeping my fingers crossed. If it's truly non cancerous, that would change my stage from IV to IIA.

Dx 11/8/2019, Both breasts, 3cm, Stage IV, metastasized to lungs, Grade 2, ER+, HER2- Hormonal Therapy 12/18/2019 Femara (letrozole)
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Jan 14, 2020 11:46AM IntoLight wrote:

Hello VFP. Welcome to this forum although I am sorry you have to be here. We welcome all experiences and questions.

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- Targeted Therapy Ibrance (palbociclib) Hormonal Therapy Femara (letrozole)
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Jan 14, 2020 12:07PM Simone80 wrote:

Welcome vfp. Sorry to see you here, but let's hope the mass turns out to be benign.

Dx 7/2001, IDC, Right, 1cm, Stage IIIA, Grade 3, 7/13 nodes, ER+/PR+, HER2- Dx 1/2019, IDC, 1cm, Stage IV, metastasized to bone/other, ER+/PR+, HER2- (FISH) Hormonal Therapy Femara (letrozole) Targeted Therapy Ibrance (palbociclib)

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