HERCEPTIN and/or PERJETA Threads
Comments
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Hawkeye, congrats on NED! It is very encouraging to hear about such a great response to Herceptin.
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Hi Hawkeye
Thank you for your post. You have given me some comfort tonight that I may reach NED. It has been a scary time dropping the Taxotere and I'm trying hard not to become too anxious before the next scan on Aug 29!
L
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I cannot be the only person in the USA dealing with this situation. Aetna TX is a HUGE company with many subscribers. On July 26th, I received two letters of denial, one for Herceptin and one for Perjeta. As of July 1st, these pharmaceuticals (as well a Kadcyla and host of other HER2 targeted therapies) were dropped from my plan's formulary.
I am in the process of an appeal but a decision will not be made before my next infusion. I have applied to Genentech for financial aid, I have written my US Senators and Congressmen as well as my State Rep, the Attorney General of Maine and the Governor. My cancer center is working on an appeal as well. They have never had anyone denied access to Herceptin or Perjeta and were absolutely perplexed by the situation.
Aetna is denying standard of care, life extending therapies. Therapies that studies show not only increase progression free survival time but lengthen overall survival times. Aetna is thus, knowingly, shortening the lives of patients with HER2+++ metastatic breast cancer.
Have you been affected? What are you doing? More voices = more power. Contact me.
Tracy Arcari
MaineRottweilers@twc.com0 -
mainerottweilers, thanks shocking! I'm in Texas and currently have United until 9/1/17, then we go back to Blue Cross, so I am not directly impacted but I find it unthinkable to deny it, especially for us higher stages.
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mainerottweiler, I don't know your financial situation, but I went on SSDI two years ago and qualified for Medicaid at that time. Medicaid has paid for everything since ($32,000 per treatment). I started receiving expanded Medicaid (Medicaid buy-in) when I started receiving my SSDI payments, which put me over the income qualifications for regular Medicaid. I pay $130.00 per month on the buy-in plan. I will qualify for Medicare by the end of the year, which means I will have dual coverage. Regardless, I love Medicaid and would be happy to stay on it, but I do not trust Trump or the Republicans, so I will opt for Medicare as soon as I'm eligible (Dec 2017).
You may want to do some research on this option (Stage IV breast cancer is an automatic qualifier for SSDI). You are allowed to work under SSDI as long as you keep income qualifiers in mind and the Medicaid buy in plan allows you to earn about $4800 per month.
I've gained a lot of respect for Senator Collins, who has a firm grasp on this issue and has been a great advocate for healthcare. Unfortunately, I live in a state where we have both a Republican and Democratic senator. Our Republican Senator simply voted along party lines and isn't an advocate for people dealing with long-term health care issues. He's a first term Senator who will lose his seat if he doesn't develop a spine before the next election.
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I guess I should go into the Sprinkle Dust business to replace Aetna....how can they refuse coverage for 2 drugs that are known to wor
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I know, it's terrifying isn't it, to be denied. I'm appealing, appealing, appealing. Spread the word. Aetna cannot get away with this because if they do, surely others will follow. My cancer center is working on getting the medicaid thing in order, I hate the thought of that because I pay a very healthy insurance premium so I can pay my own way but I don't want to roll over and die either. Feel free to spread this story far and wide.
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Mainerotweiler, I'm a semiretired RN and have worked in healthcare for 40 years. Funding healthcare isn't a new issue. In fact, Hilary Clinton was a strong advocate for healthcare reform during Bill Clinton's first run at becoming president in the 90's, so she had been working on this issue for 30 years. Resistance to public funding for healthcare isn't new, but Trump has gotten good at blaming Hilary and Obama for today's problems.
At $32,000 per treatment and 18 treatments per year, that's $576,000 per year. Only a billionaire like Trump can afford that. But Trump is a greedy guy. The goal of the Trump administration is a tax-cut for his wealthy buddies, and his intent (as well as the Republican party) is to fund this tax-cut with money that would go to fund healthcare. That is why the Republicans made healthcare the first thing they wanted to change. They can't afford their tax-cut for their wealthy friends without cutting healthcare funding.
This is why you have to admire Senator Collins, Senator McCain and Senator Murkowski. They stood up to TPTB and did what they knew is right. As an individual, you can't be expected to pay half a million dollars a year for healthcare. The issues are the same for parents of premature infants who will rack up millions of dollars in medical bills without Medicaid assistance. And it's unrealistic to expect insurance companies or employers to pay these bills. There's a legitimate role for big government and healthcare is one of them.
When you are voting in the next election, pay attention to those candidates who support a "single payor" for healthcare funding. They are talking about Medicare for all. You already pay a Medicare tax, so you are already funding this idea. Truthfully, why are the Republicans expecting you to wait before you can use your Medicare benefit? I'm old enough to remember when there wasn't a Medicare tax on my earnings. You shouldn't have to die before you use a benefit that you have already paid for.
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pwilmarth, here! here! Well said and I agree; Cory Gardner needs to go!
MaineRottweilers, it's absolutely shocking and unacceptable that Aetna has denied you those medications! I haven't had their coverage for years, but when I did they seemed to be pretty good. What's happened to them? Very much hoping you get this resolved, but if you can't, there is no shame in being on Medicaid; you have to do what you need to do. As pwilmarth said, a reason for big government is healthcare, and big government should be there as a safety net. Good luck!
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Hi, has anyone ever had an aura Aura aftertreatment with herceptin and perjeta?
Paula.
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what is aura? I have not heard of this
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livebig,
An aura is when you see a lot of bright lights or a prism mostly on one side
Paula.
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I haven't experienced this myself. I would encourage you to mention this to your onc if you did not deal with auras precancer. If they worry about it, they can do an extra scan/MRI to rule things out. The only time I had issues with light and/or sound was when my brain was swollen from the met that was still growing. This is not to say there is not a more benign reason, but it is good to rule things out.
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ah okay - I have heard of this yes. Sorry I do not have experience with this but hopefully others will chime in.
Do you have headaches as well? I have heard of some seeing auras right before they experience a migraine. Wondering if this is your case as well
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I had one when I was on h & p. I do have a history of migraines, but never had onebefore and it never happened again. I did have a brain MRI a few days after having it and it came back clear.
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I have had 2 on HP. I had them previously so wasn't too alarmed. Exercise, stress, lack of sleep, sudden changes in blood pressure and alcohol can all bring them on for me. Luckily I often experience them without the migraine to follow. If you are concerned though I would put your mind at rest and follow up with your onco.
I also experienced terrible headache pain before I started tx which did frighten me. However I had severe sinusitis at the time and the test was the stress of being newly dx. Brain scan was clear though despite terrible headache and dizziness.
Liz
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thanks ladies,
I only had the aura with no headache
Paula.
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Good news, my scans from Friday were stable!
Bad news, my treatment was postponed because of the appeal. Still no word from Genentech. No rebuttal from Aetna and the Maine Insurance Commissioner just informed me that my plan is self funded so is out of their jurisdiction, so enter the US Department of Labor into the mix. Layer after later of bureaucracy. Still fighting to get treated and make sure this cannot happen to any of you ladies (or men).
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MaineRottweilers- I'm so sorry you're going through this. I can't believe they would deny you when this is the standard of care! Unbelievable! Have you thought about contacting your local/regional newspaper or TV station? Maybe some bad press will get Aetna to reconsider its decision. For-profit insurance is such BS!
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Hi MaineRothweilers,
Am absolutely gutted to hear the news regarding your health Insurance. I find the price of 32,000 per treatment to be outrageously staggering!! The cost of my treatment, every three weeks (Ireland) is 7,000 euro to include, perjeta, herceptin, hospital side room, pathology, consultant supervision and management of the treatment. This is covered by my health insurance. (1 dollar equals 0.85 euro). So in dollar terms that would be approximately 5,950 per treatment x 18 = 107,100 per year. There has to be something majorly wrong regarding the pricing (Greed) in America when you bear in mind that five people in Ireland are treated for the price of one person in America. Why is this????
I am delighted to hear your scans are stable and please God your appeal will be successful and you can continue your treatment.
Anyway, I am thinking of you!! I just keep putting myself in your shoes and just can't imagine the emotional roller coaster and uncertainty you must be going through. This is so wrong!! MommyErin is right.....Get your story out there to as many media outlets that you can think of and hopefully one will pick up your story and get people talking. Fingers and Toes crossed.
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Great news! Aetna has reversed their decision and will cover H&P through February of 2018.
It was unfathomable to me and everyone else I spoke to that I would be denied standard of care. A couple of compounding factors may be: I am on COBRA and still have 13 months to go. My Employer (well, former but I'd go back in a heartbeat if I were well enough) has a self funded plan. I don't know if they can pick and choose what's in the formulary or how that is decided.
I have some time to regroup. I'm not sure if the call from Senator Susan Collins's office or the call and open case with The US Dept of Labor compelled them to change their minds. I plan to keep pushing, this should never happen to another patient, being denied standard of care drugs.
I got my treatment today though and it was sweet relief.
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MaineRottweilers, woohoo! So relieved for you
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Glad you got your treatment. I just cannot imagine being denied life saving drugs.
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Mainerottweilers, so happy for you. What a relief. I'm curious if you heard back from Genentech? Surely, they will step up with their assistance program, too?
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I have been thinking about you! Fantastic news. I also find it inconceivable that standard of care could be tossed out!?! I'm happy with your outcome
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yay MaineR! Haven't been on here in while and so relieved to hear this! I've truly been thinking of you - as we all were watching very closely how this turned out for you. So glad!
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Glad to hear this, Traci. I have not been denied by my insurance company, but they did send me a notice saying I was approved for H&P through November.
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Liz,
Are you still off all treatment and doing well? What's your diet? Secret?
Paula.
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Hi Paula
I am currently on HP and Letrozole. I have a Zoladex injection to supress ovarian function every 4 weeks.
Liz
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I have been NED since May 17, 2010. I had to finish Taxol early too because of neuropathy, but I've taken Herp since January, 2010.
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