Ibrance (Palbociclib)
Comments
-
Thanks for the comforting words MJ. Yes the mental stress due to something that is rarely actionable is awful.
0 -
Hi Z and all our bc ladies - I am back from my much planned and loved Danube cruise to Germany/Austria. I lost another 2 lbs from walking and had not sick days, just jet lagged on first day. Exercise is the key to feeling better. I started round #13 yesterday (UCLA onc let me off for 3 days of Ibrance). My blood numbers are good, but I start rads on Monday for the pesky jaw met. Hoping a 3 week treatment will knock it out. The face mask is daunting, but you only wear if for the rads. Here is a pic of Schonbrunn Palace at night with the Xmas market in front. The Mozart and Strauss concert was amazing. Cheers to all.
0 -
LALady.
so glad you are home and had a great time on your vacation. Had a chance to re-read my scan results. Overall pretty good. Lung mass is smaller rib bone healing nicely. Spine not so much. Need to jump in shower as a friend is on her way over and we are headed to Laguna Woods to visit her father. Thanks for walking me back from the ledge yesterday from my scan anxiety. You are the best. Love you much.0 -
Lalady. So glad you had a great trip!!! Glad to have you back.
Anita
0 -
That picture is awesome malady glad you enjoyed your tripAurora
0 -
Lala - Thank you for the photos of your wonderful trip. I am so glad you did it. hope the rads are behind you quickly.
>Z<
0 -
Thanks LaLady for sharing the great picture. So delighted to hear you loved your trip and felt well. Good luck with the rads
0 -
Yes Lalady, Your trip sounds lovely! You are so inspiring to keep up the exercise! Best wishes on the rads. May the 3 weeks be the very end of that nasty little met.
0 -
My wife had a year of NED on Tamoxifen now she has several mets to the spine. She has to wait a couple months for the cancer to grow big enough for a biopsy as the mets are small. They really need to biopsy her mets to determine just what treatment she needs. She had 3 different breast cancers at the same time: One was ER+ 100% estrogen grade 1, ER+ 30% estrogen grade 3 and triple negative metaplastic breast cancer in here lymph nodes.
Her oncologist feels because the mets to her spine are slow growing it's probably the ER+ 100%, grade 1. Her oncologist said he'd recommend Ibrance + faslodex. She's on Washington State Kaiser, Medicade Part B and not part D. Do any of you know a ball park figure what that would could cost?
XXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXX
My wife's BC history. My wife refuses to use the internet, well except for Amazon and Ebay.
Progression with two spots on spine as of this October 2016. Oncologist wants to wait a few months to let it grow big enough for a biopsy. Complex case as she has had 3 different types of BC: ER+ 100% estrogen grade 1, ER+ 30% estrogen grade 3 and triple negative Metaplastic BC.
My wife, back in Dec of 2012 was diagnosed with Stage 4 ER+ PR+ HER2-breast cancer. One node and a small spot on the spine. After 3 infusions of AC she was clean except for the 6 cm tumor in her breast. The oncologist said since the cancer was responding well to estrogen blocker (aromasin) it was best to leave it be. Ops forgot to mention in the midst of all this cancer stuff she had to have removed a grapefruit sized and very painful non-cancerous ovarian cyst.
A little over a year later, Nov 2014, the cancer morphed and went crazy. She had a radical mastectomy and breast removal. A biopsy showed it to be ER+ and the oncologist prescribed tamoxifen. 19 lymph nodes were removed and 9 of the 19 had triple negative Metaplastic keratinized squamous carcinoma. A PET scan done after the surgery showed some cancer still in her armpit, probably spill over from the nodes. She has two cancers, one ER+ PR+ HER2- and another triple negative. She went back on A-C (lifetime amount), no Taxol as she almost died from it earlier. Almost died from NeuLasta too. Also 7 weeks of radiation.
After all that she had to have major surgery to remove a tumor from her kidney. Eighty five percent were cancerous but hers was benign.
0 -
Lalady, so glad your trip was great. Beautiful picture of the palace. Best of luck with the rads for the jaw met. You are in my prayers.
Mike3121, I have no idea of cost for your wife's meds but there are lots of different charitible grants out there to help pay for them if you can't afford it.. The pharmacy or your doctor's office could help you find them. Good luck to both of you.
Faith (in the future
0 -
mike3121 - In regards to your inquiry of the cost of the Ibrance (approx. $10,000 mo.)/Faslodex (2 injections mo. @ $1,875. per shot) combo. But do not fret, Medicare part B covers the Faslodex, which is administered in the MO's office. The Ibrance is available through patient assistance from Pfizer. There is an application you can download on the RX Assist site. The assistance is based on your income. Also, there are some patients who use a program where they pay a co-pay of $10.00 a month I believe. There are also organizations that have co-pay grants. But there aren't any of those available right now. I know this because my last grant ran out last month and I was informed that there wasn't anything else available at this time. So now I'll get my Ibrance via my part D insurance & Pfizer's PAP.
I hope this information is helpful.
0 -
Mike3121, I use the Pfizer Patient assistance program for the Ibrance cost and like Junie said it gets it down to $10 per month. The specialty pharmacy that sends the ibrance to me did the paperwork for the program. I believe the only criteria was that I wasn't on Medicare. Can someone confirm if that's right as I don't trust my memory. Whatever it was, there was a different program available if I had answered yes to that question.
0 -
My wife and I are both on Medicare and NOT part D. I went to the site and anyone with Medicare doesn't qualify for the Pfizer Patient Assistance Program. I saw a post by someone that said the other assistance programs have been cancelled.
0 -
mike3121 - Being on Medicare does not preclude you from the the Pfizer program for Ibrance. I have regular Medicare part B & D, not a Med-Advantage plan. Part D is the prescription part of Medicare. If the RX Assist site wasn't helpful, check out this link for NeedyMeds.
http://www.needymeds.org/drug_list.taf?_function=name&name=Ibrance&gname=palbociclib
If your income falls within Pfizers' guidelines for their PAP, you should qualify. My Part D pays for a portion, then my grant paid for the co-pay for a time. Now starting in January I have to re-apply for Pfizer's PAP, which I've had before, even with my Part D coverage, and Pfizer covered the entire cost of the Ibrance. The reason for this is because the co-pay is way too much for me to afford. Under my coverage my co-pay for January would be $3,200, then the next 11 months would be $521.00 monthly. So based on my income level, I qualify.
The best person to get direction from would be the patient Navigator at the MO's office. They have all of the info on the available programs and their requirements. The one at my MO's office has been an incredible help.
Also, depending on the neighborhood you live in and how you receive your mail/packages, the Specialty Pharmacy can deliver the Ibrance to your MO's office and you can pick it up when your wife goes in for blood work or treatment. This is how I get mine each month. I live in an apartment complex and have had a package of pills stolen before.
I hope this helps.
0 -
lalady1, Perfect! I have LOVED all of my trips overseas! We all deserve every joy! Thinking of you with the RADS to the jaw. Hope it speeds by and zaps the idiot jaw met. MJ
0 -
Scan shows progression in liver and breast and lymph nodes. Just finished my 11th cycle of Ibrance/letrozol, but progression probably started a couple of cycles ago. I had no evidence of metastatic disease in July, now I have multiple small hepatic lesions with at least a couple ~2cm. Most lymph nodes impacted. Mass in breast is 2.5cm x 4 cm, was .6cm by 2.5cm. Meeting with oncologist in an hour. Lining up second opinions.
Breathing ...
Please keep me in your thoughts as I navigate this bump in the road. I was hoping for more time on letrozol and Ibrance, but I'll get through this.
>Z<
0 -
Zarovka, so sorry to hear of your progression! Keep breathing! I'm sure your onc has lots of treatment options to go yet. Good for you for already lining up a second opinion! Cancer is a sneaky bitch for sure. Please keep us updated on your treatment choices and decisions. You are in my thoughts and prayers.
0 -
Lalady - question related to your trip (which, I'm sure, was wonderful...I've been on the Viking Danube cruise several years ago and soooo gorgeous). Question: I have a cruise to Cuba lined up for May/2017. I am needing to get add'l trip insurance in case of last minute cancellation. Did you get add'l coverage for your trip and, if so, can you share info? THANKS MUCH!!!!
0 -
Zarovka, You are in my thoughts and prayers. Sending hugs and good vibes your way. I know it is difficult to hear about progression and to think about changing treatment plans, but you will make it over this bump in the road. We are all here to support you.
Lynn
0 -
Z- I am sorry to hear about the progression. Keep breathing and staying focused. Please keep us updated. Thinking of you.
0 -
Z - we are here for you. Deep breaths. You are strong! You'll get a plan that will knock those mets down. It's a bump in a very long and winding road, not a road block nor the end of the road. Hell no
0 -
My Dear Zarovka. So sorry to hear that you have hit a bump in the road. I have found you such a support and font of knowledge so thank you for that. You seem like a tough lady who keeps herself healthy in all other ways so please breath in and out put one foot in front of the other and keep marching on for yourself, your family and us. Chico xxx
0 -
Jen- Lovely photo! I'm so glad you are enjoying the trip after a crazy year. Cancer provides enough drama without a bad relationship. I admire you and your son will too!
Z- You deserve a treat after a day like today...
Lalady- your trip sounds lovely! Hope the rads go quickly and get rid of that spot for you.
No matter what is going on with this thing- we all deserve some extra kindness and love this Season!
Time to give out hugs and enjoy a cup of delicious "something"
0 -
Oh Z, That is just crummy. So sorry you had to hear that today. We are all thinking of you and the next treatment plan. I hope it kicks cancers butt whatever it is. And yes breath, shake of the stress if you can, as I know firsthand how bad it is for us. You are strong and you will get through this!
0 -
Z thinking of you..keep our chin up. Last time I saw my Onc she said there was a line of treatments to keep us going. Please let us know and stay positive and strong.0
-
Z, just echoing what everyone else has said. I'm so sorry this has happened to you, life is not fair. You have been so strong and so helpful to many of us. If anyone can beat this back, you will. Hang in there, you are, will continue to be in my prayers.
Hugs, Faith (in the future)
0 -
I am gathering medical records for second opinions, trying to organize a biopsy and generally dealing. I am going to get some ALA and Vitamin C IV's while I sort out the plan. I will be hiking in Utah for 11 days starting Friday.I am trying to line everything up before I go. Thank god for the high intensity workouts and I'd never get through this.
My MO's first thought is fulvestrant without Ibrance, but when I raised the possibility of genetic testing and clinical trials the options expanded. I have calls into two integrative oncologists for their opinion. Pondering a trip to the NIH but it may be early for that.
Thank you all for being there. I had other plans for xmas week but I will get through this.
Will let you know how it goes. I know I am not the only one who wants to know what happens after Ibrance.
>Z<
0 -
Z, I am so sorry. Cancer just sucks, to put it plainly. From what I've read in your posts, I know you are a strong lady and so smart. You and your onc are going to find the best possible treatment plan. I met with the MATCH clinical study representative last week. My plan for now is to enroll in the study and start Doxil chemo this week. I will most likely receive 3 treatments before I have feedback from the genetic testing. The only downside for me to join the study is that I have to have another biopsy. If the study reveals that a better treatment plan exists for my tumor, then I have the option of switching. You might want to check into the MATCH study. It's open to all solid tumor patients who have failed their current treatment plan. You can receive chemo (with the study's permission) while you wait for the genetic testing to be completed, but you can't use a targeted drug. The genetic testing will be done at no cost to you or your insurance company and if there is a treatment match, the chemo/drugs will also be free. Your onc will receive all the genetic testing results.
I'll be praying for you.
0 -
Thank you DeeDee! -
I had my eye on the MATCH trial a while ago, but I'd forgotten about it. MATCH is now on the list. Any other ideas please let me know. I've been reading for months preparing for progression but I am still not prepared. Oof.
I have had progression in the breast, lymph nodes and liver. MO suggested just getting the lymph nodes biopsied. Since it all progressed at once she thinks it is likely to all be the same. None-the-less she gave me an order for both a lymph node biopsy and a liver biopsy and left it up to me. How important do you all think it is to get both the lymph nodes and the liver biopsied?
>Z<
0 -
Dear Zarovka,
Oomph!!! I felt that as such a huge punch to the gut, in part because its just when you don't expect you are sailing along OK and then, without warning, all this crap starts to get real again. Breathe, you are right. But then (we all) prepare to fight harder
My husbands childhood friend called last week, she had just been diagnosed a few weeks earlier ( age 62) with metastatic pancreatic cancer. I sent her a link to Rosenberg clinical trial at NCI, which may be the trial you mention? (https://clinicaltrials.gov/ct2/show/NCT01174121)
Her husband was trying to get her in there, but she went into the hospital earlier this week in septic shock, they did surgery to try to get organs working and realized the cancer had spread just too much, so they closed her up and she died of a blood clot the next morning. Surreal and when I spoke to her, she clearly was still in complete shock, never got any time to absorb anything.
I think you are too early for that type of trial, it requires you have had multiple treatments, including chemotherapy, so Faslodex seems like its much more appropriate. Have to be super-vigilant without freaking out. There are many, more powerful, treatments out there, but they are for the future.
That said, why discontinue the Ibrance? The progression is most likely because the cancer cells are resistant to AIs, not the Ibrance? This bothers me that we are given Ibrance without any test that says whether or not it is doing anything, and then told to discontinue it, again with no test or reason to believe it will or will not do anything, drives me crazy.
And I agree, its now time to get some sequencing done! There is both DNA and protein sequencing to be done, not all of the cancer mutations are in the DNA! Here is a link to state-of-the-art analysis: http://www.cancermoonshot2020.org/press-releases/g...
Rosenberg just published they have engineered T cells to recognize K-Ras mutations, and these are very common in cancer, so you need to know if you have these and other mutants for which drugs or therapies are availalble, and of course MATCH is another way, but you do need the proteomics to be included!
Plus you may want to be asking about cancer immunotherapy in all of these consults? There are several different kinds with more coming, so how do we know if we respond or not if they don't start giving them to us?!
Arrgh, the stress is awful. Breathe, and please let us know what you find out, so we can breathe for you too! Kathy
0
