Last Wednesday I had a scan, the day before Thanksgiving. I have been on ibrance now for about eight or nine Cycles. I saw the results online, there is a little progression in the abdomen and a little bit in the chest or breast area. I will see the doctor tomorrow to discuss results. My scan also showed evidence of acute diverticulitis. But I have had no symptoms of that yet. My doctor has indicated that the Next Step will probably be to send me to the genomics clinic to be evaluated for targeted therapy. I am just finishing my third line, the first two were tamoxifen and Anastrozole, for the past eight or nine months I have been on ibrance and fulvestrant. I am guessing my next line May be xeloda or possibly piqray if I have the mutation although financing I think will prohibit that. So I will let you know what is next. If anyone else has gone this route I would like to hear of your experience.
Scan last week showed progression - SHARE Metastatic ...
Scan last week showed progression
Very very sorry to hear of your progression. I am on Faslodex and starting today will be my third try with Piqray. The first two tries, I got a horrible rash and had to stop. They now have me taking Claritin, Prednisone, & Pedcid to try and build up my system to avoid the hives. Yes, Piqray is expensive, but you may be able to get financial help. Let me know if your Onc wants you to go that route and I'll share some ideas with you. Keep us informed.
Hi Wolverine - Gosh, okay, that's not what you wanted to hear. I hope you're doing okay. I'm wondering why Piqray would have financial implications? Is this not covered? Does their website offer some financial assistance? I think it's awful that we have to jump through so many hoops in an effort to get the meds we need, but I have an admittedly vague sense that there are ways to get them? If that's what's best, perhaps the women on this site have found ways to finance that...Very best wishes to you...Take care, Lynn
Hi LynnFish no,piqray is not covered, as I am now on Medicare because I have been on disability for 2 years. None of the Medicare Advantage plans that I qualify for will cover piqray at all. I am told it is 20 k per month. Well I will find out in a couple of months what the story is, and I guess I will take it from there. Thank you for your good wishes.
Oh, gosh, that makes me nuts! We all need to scream at our legislators! GWBush compromised with Big Pharma when negotiating pharmacy coverage for medicare and now the drugs we need to like LIVE are unavailable or unaffordable! I just don't get why any U.S. voter would choose to put pharmaceutical corporate profits above necessary healthcare for, like, people. LADIES, PLEASE BECOME ACTIVISTS FOR HEALTHCARE! Call your elected officials and vote accordingly!
Omg! That will be my life when I lost Medicaid in one year. I am on disability and waiting for the 2 years period to apply for medicare. Can we have medicare and secondary insurance thru husband insurance?
With me when I had to go on medicare, I did not even have to fill out for medicare, they immediately started deducting the $135.50 for Plan B and I had to pick a Plan D for rx which cost me $37.90 a month. They know when you are eligible for Medicare.
There are many pharma organizations or cancer organizations that help with the cost. I am on Verzenio and I had to go on Medicare in August and even with my Plan D, they expected me to pay $2,437.00 a month which I could not afford (I was in the process of trying to get Medicaid as my secondary insurance in the meantime which can take months (I was approved)). My social worker was even having problems. All I did was google Lilly, the company that makes Verzenio. As long as I had medicare and a medicare Plan D, I filled out a one page online form, had my onco sign it and then fax to the number they gave me. Within two days, I was approved to get it for free until the end of the year. All I had to do was copy my medicare and plan d rx card. I only needed them to give it to me for free for two months before I got accepted for full medicaid so now instead of the $2,437.00 copayment that Medicare expected me to pay, now that I have full medicaid as my secondary insurance, I now will be paying $3.84.
You have just to be your own advocate.
Do some googling or research. Does your cancer center have a social worker. When I had to go ton Medicare in August, I was expected to pay $2,437.00 a month towards my Verzenio. Of course, I could not afford it. My social worker was even having trouble trying to help me get assistance.
I did some research and went on Lillycares.com (Lilly makes the drug) and as long as I had Medicare and a Medicare Plan D Rx plan (I did), I filled out an easy one page form and then scanned to my onco to sign and faxed over to them. Within two days, I got a call from Lilly that I was approved to get it for free until the end of the year. My social worker was shocked that I was able to do that on my own.
Go to the novartis website: There is help. You just have to do some research. And this is specifically what I copied off their website for the drug piqray. This is for people with Part D Rx coverage and it was a question asked and answered. When there is a will, there is a way! Good luck. I was able to mine so easily I was shocked and I was on Medicare also.
"I Have Medicare Part D Coverage
It is estimated that 73% of PIQRAY prescriptions will cost between $0 - $10 per month with the remaining prescriptions having an estimated median cost of $705.
"
Percentages shown are estimates based on source data.
You are super Kearnan, thank you for that very useful information. I wanted to go on verzenio per my doctor's recommendation earlier this year, but my insurance did not have it on their formulary which is why I ended up on ibrance. I guess I will always wonder if it would have worked longer but I still think it's okay. We may try that at a later point in time. They are still understanding how these pi3k Inhibitors work. I have talked to my social worker where I am getting treatment, she is young and doesn't seem to know a lot about Medicare. But yes you are right I am learning to be my own Advocate and ask those right questions. Sometimes you have to ask a lot of people until you get to that right answer. I have received a few surprises that way. So I just returned from my doctor appointment and I will be going to the genomics clinic and will not know anything else for a couple of months. But thank you so much for the information on piqray, I will move forward from here. I might not have any mutations and we'll go with standard treatment but the results of the genomics test will indicate that.
In what state you live? In GA we have a specific Medicaid insurance for breast cancer patients. I didn't qualified bc my husband income but I was able to get regular medicaid.
I have a friend we another condition in her brain and she was able qualified for Medicaid and medicare. You should check on that.
I went on Xeloda after Ibrance and it kept me stable for a year. Now, I'm back on Ibrance again and it is working.
Well that is very interesting news, when you stopped the ibrance the first time, was it because there was progression and then you went to xeloda? Or did you stop for another reason? You are giving me hope that maybe I can go back on the ibrance I haven't even thought about that. I will ask my doctor today. Thank you,!
I was on a clinical Trial on Ibrance and Tamoxifen. It yielded 24 months of no progression. I was taken off due to progression after that 24 months. During my time off of Ibrance, I was held stable on Xelodaand there was data that if patient is on Ibrance and then taken off for at least a year, they can go back on Ibrance and have efficacy on it again. The xeloda was easy to take. While I was on Xeloda, I took Vit b6 and kept my hand and feet moisturized with Udder Cream 20% urea that I got on Amazon and didn't have any issues with my hands/feet.
Yes aL yoga, I did ask my doctor about the possibility of going back on ibrance and she immediately nodded her head that that might be the case, thanks for the information you passed along. The information I get on this blog really does help me formulate my questions for my doctor as I progress. So this was a really substantive comment, you gave me, thank you so much.
So sorry to hear your results. Stay strong and I pray your next step will work for you.
Love and hugs,
Marianne
I'm so saddened that the treatment stopped working for you. Our God must have something BETTER for you! A woman in florida was totally healed of triple negative bc with immunotherapy. There are foundations that have all the money people have donated to eradicate breast cancer and I would begin checking with all of them, if you haven't already. God bless you, make a way for you, and heal you in Jesus name, amen! <3
So sorry to hear the news. No one wants to hear it for sure. It will be interesting to hear what your oncologist says during your appt. praying for a good option that works going forward ❤️🙏❤️
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