Have any of you experienced blurry vision with Femara? I already have brain damage from the Exemestane that has left me dizzy and off-balance. My cerebellum is miscommunicating with my eyes making them jump around causing the above problems.
Also, can anyone verify how much of a kickback doctors get for prescribing our cancer drugs?
Dehydration is similar but the info web page on Exemestane has a warning that it can cause trouble with your vision, dizziness and balance problems. I was diagnosed by a balance specialist that said I have brain damage from a drug they used to treat my cancer.
I'm a long timer living with mbc (nearly 16 years) and have not heard of doctors getting "kickbacks" from drug companies. They may get wined and dined by drug reps who like to "educate" docs about their companies' drugs but I've never heard of kickbacks. That doesn't mean it doesn't happen. Has a physician told you that you have brain damage , as opposed to symtoms or side effects involving the brain? I was on Femara as first line treatment and got almost five years from it and did have some fatigue, hot flashes and bone pain from it. I've now been on exemestane for two years and though I am fatigued, I haven't noticed other issues with it. But we each have our own experiences with treatment and specific drugs.
I copied and pasted the article here. Medscape Medical News > Oncology News Oncologists Getting 6% of Drug Price Is 'Financial Conflict'
Roxanne Nelson, RN, BSN
March 07, 2018
"No one is immune from $ temptation.... We have a system that rewards oncologists and their chemotherapy offices with more $ for giving more expensive chemo. This has to change," said Vincent Rajkumar, MD, a professor of medicine and a hematologist/oncologist at the Mayo Clinic, Rochester, Minnesota.
He was highlighting a controversial topic — Medicare Part B reimbursement for drugs that poses a "financial conflict" for oncologists in choosing which drug to prescribe.
The point was made in a Twitter thread that began with Rajkumar highlighting the case of a patient with myeloma who was taking a bone-targeted therapy to prevent skeletal-related events (SREs).
"Last week a myeloma patient told me his oncologist had switched him from Zoledronic acid (ZA) to a 'new, easier' option: denosumab. A recent @ASCO guideline in @JCO_ASCO said both were options. ZA is ~$70; Denosumab is ~$2000. The oncologist gets 6% of the drug he/she chooses."
Not surprisingly, the tweet prompted a discussion that included a variety of opinions.
Rajkumar emphasized that his tweet was not about the merits of one drug vs another or what the guideline said or didn't say or finding fault with colleagues. He wanted to highlight the current system. "It's the Medicare reimbursement model that needs to change. For this, laws and regulations need to change," he wrote on Twitter.
Distorted Model
Drugs that are administered by infusion or injection in physician offices and in hospital outpatient departments are covered by Medicare Part B, as are certain products furnished by suppliers.
Under the current system, oncology practices must buy the chemotherapy drugs up front. The cost for drugs may vary; in the United States, Medicare reimburses costs on the basis of the average sales price (ASP) plus 6%. The 6% is meant to cover any variation in the acquisition price, as well as overhead.
As Rajkumar noted in his Twitter thread, that means that providers will be paid more money for prescribing a more costly medication, even if a less costly and equally effective alternative is available — such as the case he highlighted with the myeloma patient being prescribed denosumab (Xgeva, Amgen) in place of zoledronic acid.
Instead of being reimbursed a fixed dollar amount over ASP, the 6% add-on creates a financial conflict, because 6% of a more expensive drug will bring the practice more money than it would have received had a less expensive drug been used, Rajkumar noted.
"We have a system where even if two drugs are equally effective, because of the reimbursement being greater for the more expensive drug, it puts a financial conflict for physicians who have their own dispensing facilities," Rajkumar told Medscape Medical News.
Thank you! This is prompting me to maybe decline the horrific outrageously expensive drugs they want to put me on. I have also had polio and am not very strong.
I was given the Exemestane first and now they want me to take Letrozole. I am terrified to trust any new drugs and doctors after how I have been harmed. Imagine what it would be like to lose your sense of balance and you stagger when you attempt to walk. It is not only dangerous, but I am terrified! Not to mention that it should not have happened! The oncologists that I were seeing were not aware of the warning about the eyes, dizziness and balance. I am VERY angry at both of them! I felt more confident having two to watch over me and be a team, instead they both failed me! The jokes on me, only I'm NOT laughing!
There is a warning above the possible side-effects that Pfizer about Exemestane published on their website. It stated that if you have vision problems, are dizzy or have a balance problem, tell your doctor RIGHT AWAY! I told two of them and neither had a clue.
In good old capitalism, where greed is at its core, with health care for profit, we are in great danger. NPR put out a report that said that "Women with breast cancer in Las Vegas have a substantially lower rate of survival than anywhere else in the country," Are any of you aware of Dr. Fata from Detroit, an oncologist, who told 553 of his patients that they had cancer knowing that they didn't, giving them chemo that killed many and harmed others? He was sentenced to 45 years in prison in 2015. They featured him on "American Greed." We have our own Dr. Fata here, a breast cancer surgeon who is deliberately leaving cancer in her patients. I am one of her victims. It's a very long story. My primary told me "Just think, had she NOT done that you would probably be fine right now." We have a very corrupt medical system and the #1 most criminal medical board in the country in Las Vegas, which explains why this is happening.
Yes, anywhere there is big money to be made, there is always evil present as greed. I quit ibrance after 4 mos., the last straw was chest pains, other than that I felt pretty good on it. I now take letrozole, ginger, vitamins and Joe Tippen's protocol as it is not harmful and gives me hope that I am doing SOMETHING additional that might help. I also went up for prayer at church, so I have faith that God won't have me leave this earth before it is my time. I try and follow His peace about what I take and what I refuse because He alone knows what's helpful and what's hurtful. I feel like if the doctor told me tomorrow that it's advancing, I would probably throw anything available at it, I'd probably try verzenio, but in the meantime I want some quality of life. I feel like I have rheumatoid arthritis some days, that's why I cut down on my letrozole. Time will tell if it's adequate but in the meantime I can move, I was in so much pain and it let up greatly when I halved the dose. When I first quit the ibrance, I have never hurt so bad. Now I take 1/2 letrozole 4 times a week and my numbers on my last cancer antigen test are still dropping, last one being 57 a week ago. Disease is stable per bone scan this month. My vision does fluctuate, but I blame the diabetes for which I take metformin, but it was definitely much worse taking the ibrance. I remember opening my eyes and the left eye was magnifying then would adjust, weird. THAT is not happening anymore. I was prescribed atorevastatin for my high cholesterol and I couldn't take it, made me confused and forgetting what I was saying mid-sentence. I tried it again a month later thinking one little pill couldn't do all that but then it happened again ... so very strange! so now I will go back to the doctor soon and see if he will prescribe another statin as hubby takes one with no side effects. How is your balance now? I don't know if it would help you, but when my son was having dizzy/balance issues, I found exercises online where you move your head a certain way and it's supposed to realign the crystals in your ears that give us our balance. Here's some information, you probably already have it, but sending anyway just in case. I pray this finds you well. I try to be honest about what I am taking/doing and this is in no way any attempt to influence or prescribe to others, as we are all different and what works for one doesn't always work for another. I am not particularly afraid of death, but I don't want to be disabled. My new saying is "I want to die healthy", lol I love oxy moronic jokes. God bless you and heal us all in Jesus name, amen! webmd.com/brain/home-remedi...
So sorry you are suffering as you are. As I have posted, my body does not deal well with drugs. Herceptin/ perjeta left me with cardiac problems. My onc took perjeta out but long story short, treatment postponed because my cobra ended and new insurance didn’t start yet. Am on cardiac meds to try to prevent heart failure but meds are messing up my stomach.
I find that I have to advocate for myself all the time, especially with side effects. I have to often be firm and resolute. It’s draining. I tried to just be a patient-I changed primary doc in July. In sept I asked him to change my bp med because of ankle swelling and drug is known to cause it. He stopped the Med. I truly believe as a nurse that played a big part in leading into heart issues. I want to sue him but cases are won 20% of times even with strong evidence.
No taking off nursing hat ever again. I did question it many times but he did not respond to the questions -every time I saw him I had another problem. I am planning on going to the medical director about it.
I was an administrator for a big oncology practice in nyc,2001-2008. The days of kickbacks ended in 2007, including lunches and dinners. Plus Medicare hit oncology hard then cutting reimbursements all across the board. When there were new drugs out medicare did not usually cover them without a fight; they wanted drs to use older cheaper drugs. I doubt any kickbacks are done- not only are they illegal but also grounds for whistle blowers.
I think everything now is volume and quality is at risk. I also believe that drs need more education about side effects of drugs, more so in oncology. When new drugs come out drs read the efficacy percentages and results of studies; if a drug looks promising they will use it. There is not enough focus on side effects which is what some of us suffer with and they are baffled .
I hope the balance issue is temporary and there is treatment for it. Sending you hugs🙏🏻🙏🏻🙏🏻♥️
Thank you Francesca. I am living in hell right now with the severe brain damage from the Exemestane. To think that I had a team, two oncologists, that I thought would protect me now seems to be a joke. Neither of them were aware that it could do this to me! I also just found out recently that I was put in another dangerous/criminal medical situation. Breast cancer care for women in Las Vegas is dangerous. I am convinced that we are cash cows and nothing more. The woman surgeon who did my lumpectomy in 2009 left a deep margin of cancer in me and never called me back to get a clean margin. I feel it is because I changed my mind about what hospital I wanted to go to. She begged me to go to the one that was more convenient for her but I had a right to change my mind. On the day of my surgery, she went to the wrong hospital and everyone razed her. She was probably an hour late, not to mention she showed up at the other hospital and I wasn't there. I kiddingly told the anesthee siologist that he better really watch her in the operating room because she was going to want to kill me. Turns out, in the long run, that is what she has done. She has done it with malice and with intent. She is also leaving cancer in other women, which I believe is because we have health care for profit. I called a medical facility who knew what surgeon I was talking about when I explained that "my surgeon," had left a lot of cancer in me. When she knew her name, I gasped and said "How did you know that?!" She said, "You're not the only one talking about her, other women are talking about her too.." What does that tell you? I have become fully aware that breast cancer drugs are very expensive and profitable. This surgeon works for a major cancer center here. Did you read the article that another lady posted saying that doctors, hospitals, cancer centers, etc., do get a 6% kickback, which I believe to be true. Did you see Alex Trebeck on TV last night? Though he is gungho to try new drugs, he also made the statement that the chemo will kill him before the cancer will. I believe this to be true in many cases. In 2009 I was radiated after a lumpectomy for six weeks. The problem is that I didn't have a clean margin. I went to new doctors, radiologists/oncologist who went through the roof! "You NEVER EVER radiate someone who doesn't have a clean margin! Well, this is Las Vegas and they radiated me for six weeks. I was going to the Nevada Cancer Institute whom desperately needed money so I am sure that is the motive along with the fact that the surgeon who left the cancer in me had it in for me. NCI closed down due to bankruptcy. I want the surgeon and the doctors prosecuted for killing me. One of my doctors nodded her head when I asked, "It would have been the same if she (the surgeon) had shot me with a gun leaving splinters of the bullet in various organs that over time would have killed me if I moved the wrong way?" What they have done to me is medical murder, which also included huge profits for them if they get me on the $15,000 a month or more drugs and if their cut is 6%.
I have had nothing but bad oncologists since I have started this journey to hell! I am on my 5th one. My first one didn't protect me from the surgeon here that is leaving cancer in all of her patients. Neither did the radiologist/oncologist here whom actually radiated me for six weeks when I didn't have a clean margin! This was at the Nevada Cancer Institute that was going bankrupt, which I didn't know, and then did go bankrupt. I feel they all did it for the money because they knew that Medicare would pay for it! My new radiologist/oncologist nurse told me that "You NEVER EVER radiate a margin that isn't clean, and they NEVER should have radiated you!" They did it for six weeks! My second oncologist ordered a biopsy on my sternum twice when all I had was specks. After the radiologist refused the second time, I called him to ask him why he wouldn't do it. He told me it would have been fatal for me. Thank God for his integrity which is rare here, if existing at all. My 3rd and 4th oncologists, which I thought would be a team to protect me, are responsible for the damage the Exemestane did to me, neither of them aware, that this drug did this. I was the one who investigated and found out! I am now on my 5th one. He seems very nice, but he wants me on chemo drugs which cost a fortune though I am covered. I also have post-polio syndrome and am not very strong, not to mention that it terrifies me when I read about all of the excruciating pain many of you experience when you go on them.
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