Faslodex Girls Thread
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i don't post here often but i lurk a lot. just wanted to take the time to thank all of you for sharing your experience. every one of you is very much appreciated.
happy holidays,
kay
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Well, the geeks at my hospital didn't put on their thinking caps at all. It is 5:42 Christmas Eve, and they just called with a reminder about my upcoming PET scan. You would think that someone might have suppressed those calls on a holiday that is about joy. Jolt back to reality. And now I will enjoy a shower, and then a glass of wine before all of my family arrives to make merry.
*susan*
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Holy holly berries, Susan, really??? What unthinking jerks!
I hope you made merry like mad. Tonight we were home for a change. We enjoyed a quiet dinner--roast pork stuffed with prunes, steamed Swiss chard with pine nuts and pomegranate seeds, baked potatoes, a decent Syrah--then watched "White Christmas," with its corny script and woefully phoney sets, but some good songs and dancing, not to mention knockout gowns.
Happy holidays to the Fanny Pack!
Tina
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anyone know a naturopath in the ft. Lauderdale, fl area?
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Started my shots Dec 19 and thanks to the good information provided by so many in this group, it went better than I could have hoped for. The nurses knew what they were doing which helps mightly and I did a lot of walking while they watched to see if I would implode. I have a lot of chemical allergies so they pumped me up on steroids for fear of an allergic reaction to Faslodex. Am not allergic to it but I had six days of pain free joints.A real luxery based on the way these medications effect our bodies. The information here was great because I got no information fron the oncologist's office.
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Meg,
Welcome to the Fanny Pack, and BCO.org. Great that you didn't have an allergic reaction to the drug. May it work well for you for years to come.
*susan*
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Susan,
I looked at your signature again and I noted that you have had NED for over 4 years!!! WOW!
I have a stupid question: Given the drug's success so far, at what point is it okay to take a break from treatment?
Hugs,
Brenda
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Wecome Megc.
Adnerb, I have no idea the answer you your question. I've been at this close to two years. Sometimes we have to put off the shot for a week (happens about twice a year); my onc just shrugs at that.
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Brenda, do you mean a real break--like several months or more? With Faslodex, my guess is probably never. Since the drug interferes with estrogen receptors, it needs to stay at a certain level in the body to be consistently effective. It's administered every 28 days via intramuscular injection and is slowly released over time.
I have been treated with Faslodex for more than three years.
Welcome, Megc. Bottoms up!
Tina
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I have a question for the long time Fanny Packers: if you have to change the 4 weeks interval due to personal or holiday reasons, do you go back to the original shot date (i.e. back to Thursdays after Thanksgiving or Christmas or New Year's Day), Or your schedules are permanently changed to the new shot day, i.e. change to every four weeks on Mondays instead of Thursdays?
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Cling, I've always been able to go back to the original day of the week. I done this several times, after having to delay the injection for a week or so here and there through the past three years. It happened this month, in fact. My usual Thursday injection day would have been Christmas Eve, so we switched it to this coming Monday. I expect to be able to set my next appointment for the upcoming appropriate Thursday.
Tina
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Adnerb, I have never considered a vacation from treatment. It is working. It isn't so very bad. I don't anticipate wanting to test fate.
Cling, the one time that I had to delay a treatment, we delayed by one week so my day stayed the same, and then the next injection was exactly 28 days after that one week delay. I really strive to live within my 28 day schedule.
*susan*
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Thank you for your quick response, ladies. I am loving this thread. I am also not getting any major side effects. A headache here and there. Joint pain sometimes. I was in a panic two weeks ago because every time I sneezed my chest would hurt. I was thinking, oh no, I have not even been on faslodex for 2 months and I am having progression in my lungs already!!! But the pain went away for some reason, so either the faslodex is working or I just had a torn muscle somewhere!
I hope to be on this drug for a very, very long time and I wish the same for everyone here.
Hugs,
Brenda
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Hi ladies...
I'm just curious if anyone is on a Faslodex/Anastrozole combo? I've been on Anastrozole for four years, but after some progression the doctor added Faslodex a few months ago. Faslodex has cleared everything up, and she says I can drop the Anastrozole... but I'm reluctant! Don't want to jinx myself, although the thought of living without the side effects is appealing. Just wondering if anyone is in a similar situation?
Happy New Year to all of you! May Faslodex keep us all healthy and stable for years to come!
Rose.
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I had also been on anastrozole, almost four years with pleural mets, but just switched to faslodex after a bone lesion showed up on my shoulder blade. My doctor told me to drop the anastrozole the day I had my first faslodex injections. I asked whether I should continue the anastrozole since it still seemed to be keeping my pleural mets in check, but she said that faslodex should take care of them as well as the new bone met. That was just eight days ago, but I seem to have lost the anastrozole side effects (pretty minor, just some queasiness and fatigue) and haven't yet picked up any new ones from faslodex. Now if it just takes care of the mets...
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Thank you, carpe diem! My oncologist said the same thing about Faslodex... seems like it's a powerful drug. Hope it works wonders for you
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How in hecks name do you, or anybody deal with the co-pays of these drugs? They are working great (faslodex and zometa infusions with pill form of letrazole) but the co-pay for faslodex and Zometa have hit 11k and I started it last May! Medicaid says my husband earns too much money for me to get medicaid....he makes 70k but hes on Medicare. We will lose our home at this rate but still will run out of money unless I get sicker and well you know. Can you please tell me what you did? Thanks in advance.....Im freaking out. Oh I am 58 so dont get medicaid until im 65 but can't work full time at this point. Thanks, Val
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I have Harvard Pilgrim and once I hit my deductible, I have no further financial obligations. If you are on Medicare, the split is 80%/20%. To avoid this, you need to get a supplemental plan so you don't have that co-insurance. I purchase insurance for myself since I am self-employed. It isn't cheap, but I refuse to pay for a plan with co-insurance.
Actually, reading your message a second time, perhaps you have a different plan than your husband? Have you applied for disability or are you still working part time? How are you getting your current health insurance?
*susan*
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Hi Susan,
I live in Mass also. I lost my health insurance because I was getting it through my husband and he no longer works full time. I have had medicaid for a while...I got disability due to stage 4 BC but we were told Mass. is a spouse to spouse state and he earns too much for me to qualify for medicaid. Perhaps something through the health connector but he may earn too much for that. Unfortunately, I am too wealthy but not wealthy enough to afford this and not poor enough to get help. BUT what do you mean by as soon as you hit your deductible you have no further financial obligations. Val
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I mean, I have a deductible, maximum out of pocket amount for the year. Once I have paid that deductible, usually by January 15th, I am 100% covered by my insurance. My only co-pays are for the doctor visits which don't add up to that much and I have to pay a percentage of my RX's. My new insurance, purchased through the Connector, has some additional co-pays that appear to now be standard with all policies this year such as $150 for imaging scans.
I expect that I will also have a 24-month period when I am not covered by Medicare but am receiving disability. For now, I am saving every penny I can and making sure that my house is ready to sell when things turn for the worse. There are other strategies of course; none of them are pleasant.
*susan*
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Valerie: Faslodex or any cancer treatment drugs are very expensive. If your Medicaid eligibility is in question, please find a good health insurance agent immediatelyto help you locate an affordable individual insurance policy. The open enrollment period is closing soon in January.
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Does anyone know just how much the Faslodex shots cost? I assume we all get two shots a month? Anyway, I was covered when I started the drug in the fall because my deductible was met, but I shudder to think how much I'll have to fork over in Jan. Ugh.
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If you have private insurance coverage, the insurance negotiated rate is between $1,600 to $1,800 for 2 Faslodex shots. If you get injections at cancer center/ doctors office, it is considered as medical expenses not pharmacy expenses.
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Thanks, cling. But I'm guessing that the insurance negotiated rate isn't what I'll be paying out of pocket? I do get the shots at the cancer center. Looks like I'll meet my deductible pretty fast next year... wow
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Hi Steelrose and Valerie,
I haven't posted in a long time, but I've been on Faslodex since February and so far so good. My insurance is billed $4458 for the monthly 2 shot treatment before it gets reduced to a negotiated rate that's similar to what Cling's is--not sure if that's one of those things that can vary from hospital to hospital or not, though.
A lot of pharmaceutical companies have programs to lower the cost of their drugs and in looking for information about that I found this drugs.com page that has a few options. The criteria is pretty specific but there are several programs.
Like Susan, I'm really blessed to have insurance that covers this. Between the Faslodex and the similarly priced Xgeva plus the monthly visits, blood work, nurse's time for the injection itself, periodic Lupron, etc, etc,it just adds up so fast.
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Valerie, you should be able to get insurance through the Connector. The only effect your family's income has on the insurance is how much it costs. The state has all sorts of regulations on what must be covered -- more than a lot of states.
On the question of anastrozole, I take letrozole. Have from the beginning. There hasn't been a suggestion that we drop it.
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By my calculations, you are paying $1,375 per month in co-pays. I know for a fact that you could buy coverage for much less than that. I was able to buy my insurance through the connector for just under $800 per month, and this is a GOLD plan that covers everything after the first $2000, with a few doctor co-pays. We are about the same age, from an insurance point of view. The open enrollment is still ongoing for coverage starting February 1, but end before January 15th. Doesn't cost a penny to create an account so that you can see the plans.
Hope this all helps,
*susan*
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I can't believe how kind and helpful you have all been ! Thank you so much. This is all I'm doing until this gets straightened out but you gave me a ton of great ideas!!!!! Thank you so much. Oh and I take letrazole also, that's not an issue compared to the rest of it all!
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I echo Valerie's thank you! And Rosestoeses, it's especially nice to hear from you again. I hope you continue to do well on Faslodex. Happy New Year!
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I just spoke to a great insurance broker that I knew from years ago. I got a great plan for 580 a month with no deductibles and a cap of 1500 per year on copays. Covers my MDs and all is set for coverage Feb 1 which is great cause Medicaid ends Feb 15th. Thank you Cling for reminding me of insurance agents and thank you Susan for putting so much thought into my problem! Thank you for being from Massachusetts and thank you everyone for responding! I have loved these boards since 2009 when I joined the "club". God bless
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