After my recent dx...shock...I decided to read other posts before I shared my story. I appreciate hearing about the travelling and CTGirl1962 mentioned handling this like a chronic illness...
I have been a breast cancer survivor since 2010. That year my birthday present was having a bilateral mastectomy with 9 lymph nodes removed on the left, with microscopic findings in 1 node; and remove of 5 on the right which were all negative. Followed by chemotherapy and radiation. In addition to multiple infections due to a combination of poor infection control by the hopital and/or technique by the surgeon...After all chemo and radiation, later went to a different hospital to have implants removed and fat transfer surgery.
Rt -DCIS
Left-Lobular and Invasive Ductal Stage II. ER/PR+, HERS2 -. Tamoxifen followed by Aromasin for a total of 8 years...
Felt great and still do except for LUE swelling which I thought was a reoccurrence of lymphedema which I had before...Where I live there seems to now be a shortage of lymphedema therapists so I went on a waiting list for new patients which was going to be almost 3months...Meanwhile, the swelling appeared to be more pronounced...Including pitting edema...I went to my PCP who ran the usual cancer markers and all labs which were normal...I asked if there should be some additional diagnostics....In August an ultrasound showed 3 blood clots which were considered either chronic or superficial...Was started on Eliquis...
I still feel good except for the arm swelling and with the clots can't have the wraps for at least 4 more months...And no change in labs.
Went for f/u with oncologist who ordered a CT with contrast for chest,abdomen and pelvis which showed a mass in the adjacent area which I have seen others post something similiar. Subsequent PET showed activity, fortunately only in that area and no where else. Bx which was so painful, I guess due to the area of location again showed again ER+. Just started on Femera. Awaiting the FISH test???report to determine if HERS 2- or +. Onc doc thinks will be negative and has Rx Ibrance.
I see others are on Ibrance...I can't afford an out-of-pocket monthly cost of over $3000. To drop the extreme stress from the job took a different job however it has dropped my current income has significantly. Are there any suggestions?
Future posts won't be as long.
Thank you!
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Hoehn
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so sorry to hear about all your troubles. The only thing I can help with is referring you to the Pfizer patient assistance program. Depending on your income, you may be able to receive the drug for free. Call them to get started. Good luck!
Pfizer has a program which provides free Ibrance; I have been on it for years. This year they are limiting assistance to people with income under a certain level. I admire your courage and stamina!
Does your cancer center have a patient advocate or someone in their billing dept who can help you with the forms? Mine does and they were really helpful with completing and submitting the forms to Pfizer for me. My experience was it took me a few months after diagnosis to start breathing normally again. Be good to yourself.
first, welcome to this army of MBC warriors who spend every day advocating for themselves and helping others to endure these difficult challenges. You have received great information about Pfizer’s program which may help you with IBrance. It sounds like you are still too young to retire so this would be your best plan…there may be other options when Medicare kicks in. In the meantime do checkin to read about how others are coping or to help through suggestions based on your experiences.
For 3 years since the dx of my MBC , I felt very guilty that I had not gone ahead with more invasive lymph surgery ( like you did) back at my original bc diagnosis in 2003. I also took tamoxifen for over 7 years but finally begged off it because of the mental struggles while I was still trying to work. Twenty years ago, my ONC was concerned about the cancer returning so we were pretty aggressive in treating me with two lumpectomies, chemo, and radiation, followed by the aromatase inhibitor….all to naught, or maybe it did work to keep it at bay for 17 years.
Today’s new treatments will be more effective at preventing recurrence in the future, and MBC continues to be managed to help some people accept it as a chronic condition. That outlook helps to keep me sane , for sure.
Hope you continue to gain insight into your diagnosis and find comfort in the stories and information that we share here. My most important advice is to advocate for yourself, make noise, ask for help, seek new treatments, and never give up. 🙏🙏
I literally was just taken off Ibrance because it had stopped working. I am currently free falling with out any meds until I get to Mayo Clinic. To get some real care. Everyone is so individual with their experience with Ibrance. Mine was horrible the whole time. Started at 125mg and was exhausted and slept all day and night. Tough to do with a special needs child. Dropped to 100mg still wiped out. Also I barely recovered WBC or nutraphils. Then on 75mgs I was starting to function. But my wbc and nutraphils lower then ever. AND this last CT scan showed new growth in my lung. My oncologist I think was really negligent. I'm even considering legal action at how poorly they've handled my case. Wrong info in the portal, no one calls ever I had to harass them for appointments. Just Truly subpar care. And now wanted to put me On a harsher drug with really scary side effects , affecting all placeS I already had lesions and tumors. And literally ,no guidance. I feel like They were just throwing crap against the wall to see what will stick. I won't be at Mayo for 3 more weeks. So I've decided to do fasting til then. Reading tons about fasting and huge success with shrinking stage 4. Instead of more poison I'm gonna take my chances with this SINCE MY ONCOLOGIST WAS LITERALLY LETTING ME FREEFALL ANYWAYS. I'm angry if you can't tell. She was a blood oncologist, not a breast cancerspecialist .. at Mayo I'm going to one of the best breast cancer specialists in the country. I plan on living a long time but it's also all about who your doctor is.. sounds like you've been through HELL. IM SO SORRY. they took chemo and double mastectomy off my plate because of how far gone I was. They might as well had handed me a shovel.. I have a feeling Mayo is gonna do rigorous chemo. I'm trying to mentally brace myself. I feel like Ibrance for the right person is a decent drug. For me it was Brutal. We are all so different. I pray it works out for you. Please pray for me. And do some investigating on fasting. And Im not giving advice, I dont want anyone to do what Im doing without guidance or suggesting I have any knowledge as a medical profession. It is simply something Im going to attempt from my own research and I dont want anyone going off my advice. But Fascinating. My gynecologist who is a cancer survivor suggested it. From 3 different conferences she had recently attended on the subject and what huge success they've been having. Big pharma can't make their billions off our misery if they suggest fasting.. Be well, GOOD LUCK
NICHOLA
Once again I'm not suggesting Anyone do what Im doing. I am not a professional. I just want to save my own life since the medical profession has let me down, terribly
If you are on Medicare, the cost is high. I have been paying about $12,000/ year for seven years. However, there are many financial assistance programs based on income. Thanks to Biden, next year I will only pay about $3400. Yay!
If you are not on Medicare, Pfizer has a coupon so that you only pay $5 per month.
See if you can get information from your dr or your cancer center about getting a price cut or free Ibrance. The Cancer Center I go has helped me tremendously. Best of luck on all this and your cancer fight.
I have been on Ibrance for almost two years. If you have private insurance you may qualify for a Pfizer copay assistance program. They pay up to $25,000 in copay assistance each year.
Not sure who will be filling your script but mine is done through CVS Specialty. They have a program (PrudentRX) that will pick up the remaining copays for the year when the Pfizer program runs out.
I agree about trying to get into the Pfizer Patient Assistance Program. I got in it and received Ibrance for free. Thank goodness. It wasn’t too difficult to apply— the cancer center did most of the work and I just had to supply income data and write a letter. Unfortunately, I had to change drugs (to Xeloda) after four months.
Hi Hoehn: Regarding the Ibrance costs, suggest working with the financial folks where you are being treated for assistance. Before I went on Medicare this year I had BC/BS that paid for 50% of that med and Pfizer paid the other half. All I had to do was ask. When I turned 65 in July and had to go on Medicare I was worried….whole different ballgame. Found out through the Pharmacy Tech at Duke where I receive treatment that Pfizer has a Program (Pfizer Together) that is income based that I applied for and got my Ibrance 100% paid by Pfizer. You have to apply each year which the Pharmacy Tech helps with. She also told me if I have to change meds (I’ve gotten 3 yrs so far from my 1st line treatment) that other manufacturers have similar programs so not to worry. Hopefully this info will be helpful to others having the stress of how to pay the outrageous co-pays for our meds. I want to say the income eligibility was under $95k for the Pfizer Together program. For those living on SS or limited income this can truly be a lifesaver.
Best to you on your journey and to all the other warriors fighting the fight.
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Realistic Expectations 
Nothing working on My Daughters MBC
Frequency of Blood Tests?
Surgery and going off Ibrance and letrozole for a period of time after surgery
Not sure if I was clear about the source of the wounds.
