Too many worries: I've Been on ibrance... - SHARE Metastatic ...

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Too many worries

Mimiholl profile image
11 Replies

I've Been on ibrance and letrozole for 10 rounds. I would like to know if anyone has bee on it for more than two years, after having stage 4 BC. I find it very scary to think about how much these drugs may end up costing me financially. Too many things to worry about, side effects, cancer recurring, and now the cost. Sometimes I just want to bury my head and scream. But I have to be thankful for each day.

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Mimiholl profile image
Mimiholl
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11 Replies
Moveit2012 profile image
Moveit2012

I am so sorry that you are feeling so stressed and overwhelmed. I wish that I could tell you something helpful but I do not have any wise words. I will pray for you

nstonerocks profile image
nstonerocks

I’ve been on iibrace about 2 years. Letrozole about 2 1/2 Years. Sometimes I get really tired. My hair is like cotton candy! My labs are within normal range most times. Rarely my wbcs dip but they come back up. I too worry about how I’ll afford this if I retire. I’m 64 and will not take health insurance benefits with me. I’m going to try to figure this out this summer.

Sounds like you are overwhelmed right now. Are you feeling pretty well? Take advantage of it and enjoy times with good friends and family. If you can afford it get a massage or facial. Get your nails done! Go to a great place for lunch. Plan a vacation. Buy yourself ssome new clothes or jewelry. Doesn’t have to cost much. I bought a $7.00 pair of earrings that everyone loves! I guess what I’m trying to say is get out of your head and don’t stay home and brood. I see a therapist about once a month. I am on a low dose antidepressant. Maybe you need an objective professional to talk to. Go to a yoga class, take up meditation. If you practice a religion talk to a minister priest or rabbi. Call SHARE. They can set you up with a person who fits your clinical profile. When I felt like I was falling apart I called them and it really helped me come back from the edge. It’s a journey although I might sound pretty together, let me tell you I have my hours and days of sadness and tears I just don’t stay there as long as when I was first diagnosed

Yes there is so much to think about with mbc. It sucks. But take one thing at a time and if you are physically feeling pretty good, stay social and explore other interests or you will be sucked down the rabbit hole. Do you have a good relationship with your oncologist? Share with him or her how you’re feeling. They’ might be able to set you up with resources to give you support and answer your questions.

This disease is more than one person can take on. Ask for support and help. Make sure to engage in social and uplifting activities that have nothing to do with Cancer. Stay in touch and let me know how you are doing.

Tap321 profile image
Tap321

I have been on ibrance 2 years. It was only approved 3 years ago. Some women in the trials have been on it over 5 years. I hope that there is a way for it to not cost you so much.

Epinto profile image
Epinto

I have been on ibrance and faslodex for 21 months. I get tired sometimes and yes my hUr thinned our. I hope it works for a long time because it is too scary to think what’s next!!! Try to stay as busy and active as u can tolerate . Day by day is all anyone can do!!!

Shelly265 profile image
Shelly265

I could only tolerate Ibrance 2 months before my neutrophils tanked and I was having constant bladder infections and felt terrible most of the time. I’m currently on a lower dose of the chemotherapy Doxil every 2 weeks. I’ve had 4 rounds and this last one hit me pretty hard with fatigue. The good news is I’m not losing my hair! I think I will take a month break and then resume, it hasn’t been too bad otherwise. Best of luck to you!

LadyReid profile image
LadyReid

I been on ibrance and letrozole since feb 2017. So comming to a one year for me. I had my ups and downs. I take multivitamin twice a day to combat fatigue. I joined a crafting and crochet club. I try to learn something new from you tube each week about crafting-card making, quilling ( rolling paper for designs), crocheting little projects - hats and scarves. I'm avid adult coloring person. Brought adult coloring books from five below, clearance and any store I see has the adult coloring books. I invest in several coloring tools, alcohol markers, color pencils, gel and metallic pen sets. My favorite Glitter pens. Other days I sing listen to a new genre of music. Some days I journal are write in my planner. Recently I join two subscription box services. It's a surprise each month what I'm getting. I keep my self rather busy. My challenge is going sleep. I battle fAtigue. Now I have insomnia. What to do..,

Lady Reid

LadyReid profile image
LadyReid

I was told after I retire Medicaid will pay 80 percentage then I neeca supplement insurance for 20 percentage. I also have get supplement insurance for prescriptions too. I cross that bridge in 6 months.

worldtravel75 profile image
worldtravel75 in reply to LadyReid

I retire in 2 weeks and will have a part D prescription drug card - my monthly bills from medicare part D will be 1000.00 per month due to Ibrance - without Ibrance my bill was 260.00/year! The drug company won't negotiate with medicare - only commercial insurances and I make too much to get a discount . the price of Ibrance without insurance is 11,000/year - I have no idea how I will continue to pay this monthly fee -

PatSailsbery profile image
PatSailsbery

Have you talked to the billing office at your oncologist's office? They might be able to set you up on some programs with the pharmaceutical company or they may know of other programs available to you.

Have you let your oncologist know the financial aspect is causing a lot of stress? Does your oncologist have a social worker on staff? If not, can they set you up with a social worker?

Best wishes to you in finding the help and support you need.

LadyReid profile image
LadyReid in reply to PatSailsbery

Hello Pat,

Thanks for questions, I actually see my Onocologist this Wednesday. I will ask to see the social worker and present those questions you asked. Thanks a bunch.

We don't need any additional stressors.

PJBinMI profile image
PJBinMI

I got nearly five years from Letrozole, before Ibrance was available and now have been on Faslodex for over 9 years. If you are in the US and have paid into Social Security for enough quarters, you will be eligible for Social Security Disability and after 24 months on that, or when you turn 65, whichever is first, you will qualify for Medicare. I happen to have access to great supplemental medical insurance through my last employer but I have also heard good things about the insurance offered thru AARP. I did take Ibrance for 10 cycles in 2016 but had to stop due to breathing complications. Each of us has our own individual experiences with each med....some of us have few if any side effects and some of us have more, and it's not very predictable. But more and more of us are living longer and longer since I was first diagnosed in 2004, and that is certainly encouraging. The cancer center where I go has folks on the staff who specialize in finding financial resources for the patients, plus there is a cancer patient fund of donated money that they can give to patients for non health financial emergencies, like repairing a furnace during the winter, or getting a car fixed. I hope you will find what you need to have peace of mind!

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