Bone Mets Thread
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love the photo Babs thanks forsharing
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Question....My insurance has denied Foundation One testing. Anyone else have this problem? I have a phone call into FO to reconsider. It is costly out of pocket.
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Lindalou, Stupid insurance! i can't believe they denied with how fa into this you are. My insurance denied initially right after my Dx but have since approved after several treatment moves.
Swiss, I'm with Z. when I was on that regimen I was literally dragging myself around. They cut the dose of Ibrance and I did much better but better yet when I got off of the Letozole. Still working and taking care of kids will take it out of you anyway. You are doing great. I am still having a energy shortage and just make myself get up every 20 minutes or so to do some small chore. It makes me feel somewhat better. I have always been a "do-er" constantly on the move. It's a very hard adjustment. I hope my new meds adjust and I feel more get up and go soon.
Gracie, Definitely not good news but try not to stress too much. Same thing for me with TM's before my last scan. I was POSITIVE it was going to be bad news but it was stable. Usually mine are pretty reliable but something caused them to rise??? Hang in there and we are thinking good thoughts for you.
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Lindalou - Just fill out the Foundation One Financial Assistance Form. My sense is that F1 will pick up any cost the insurance will not. Don't stress this. F1 will most likely take care of the fight with insurance and the bill if they lose the fight.
>Z<
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Hello All!
Who is on Tykerb? What is your experience? I am starting tomorrow. I am also on Herceptin, Letrozol and Fasodex.
Joy
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I just read FDA approved Fundation one test gean mutation
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Link to Reuters article regarding FDA approval:
https://www.reuters.com/article/us-foundation-appr...
Some takeaways if you don't feel like clicking..approval designed to help set in motion Medicare approval (though it's still not automatically covered subject to comment period) and could open up the test to coverage by more private insurers, which is currently "spotty."
The test, known as FoundationOne CDx (F1CDx), is only the second diagnostic test to receive co-ordinated regulatory approval from the two agencies under the Parallel Review Program. That program is designed to help beneficiaries of the federal Medicare program for the elderly get earlier access to innovative medical technologies.
The Medicare approval is subject to public comment. The decision covers the FoundationOne test and similar tests from other companies for use by Medicare patients with advanced cancers who continue to seek treatment, the CMS agency said.
The FoundationOne test is the first ever FDA-approved comprehensive companion diagnostic for multiple types of cancer.
So far, insurance coverage of such tests has been spotty, largely because private insurers have viewed the tests as lacking adequate evidence of benefit.
The approval could "set an important precedent for coverage determinations by private insurers," said Rebecca Eisenberg of the University of Michigan Law School and Harold Varmus of Weill-Cornell Medicine, in an article published on Thursday in the journal Science.
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ChuckL, Thanks for the link. I was just reading the FDA's announcement as well. I'm not on Medicare, and don't qualify for financial assistance, but hopefully F1 will help pay some if not all of the test.
Aurora, how are you doing? I had Gemzar/Carbo duo and had quite the SE's and reaction, so I can't have that treatment anymore.
Wishing everyone a good and pain free as possible weekend.
Linda
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Hi Linda, I thank you for you including me in the conversation. Right now I’m on the chair waiting for labs so I can get the second infusion on the first cycle. The worst se is terrible fatigue and short of breath some nausea/vomiting which is being controlled by zofran. And I will go through liver biopsy next week.
Hope everyone has a pain free se free weekend.
Aurora
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LindaLou, regarding your insurance, look closely at your denial letter. There should be the reason the request was denied AND what approval/denial criteria was used to review the request for those services. Even if your insurance company specifically states that genetic testing is not a covered benefit under your plan. Often times there is an issue with the term "genetic testing" and often the insurance companies policies does not distinguish the differences between tumor genetics and treatment plans and "genetic testing" as to why a child has a behavioral issue. Yep, that really does exist!
Step 1. Immediately have your MO request a "peer-to-peer" with the medical director at your insurance company regarding the denial. Many denials are overturned at this stage. It often happens when additional information is presented during the conversation and was lacking in the documents sent to the insurance utilization group for review. Often in the back ground, the insurance company may have contacted the MO's office requesting additional information because there just wasn't enough submitted to get you an approval. Often the MO's office staff did not follow through and send that information back to the insurance company.
Step 2. Immediately call your MO's office and let them know that you would like to file an appeal to the denial. Depending on the insurance company and the state you live in, the MO's office may be able to do this on your behalf. In some cases you will be required to file the appeal. The appeal will then go to a special unit within your insurance company for additional review. Your MO needs to be prepared to submit additional documentation to this group as to why F1 testing is needed. At the least this documentation needs to identify that treatment decisions will be directed based on the results of that testing. Be careful regarding the pharmaceutical trial path. ALL insurance companies see pharmaceutical trials as the financial responsibility of the drug company conducting the trial. Additionally most insurance companies do not review trials as standard of care and they will only cover standard of care. Make sure the new FDA article regarding F1 is included. There are currently drugs that have been FDA approved that require genetic testing so you MO needs to go to bat regarding that side of this equation. Most insurance companies post what is needed for an approval on their web sites under their provider links. If that information differs from the National Cancer Institutes cancer care guidelines, your MO can argue those care guidelines helping to make the case for this kind of testing.
Step 3. If the appeal review results in another denial, then you will need to immediately request a fair hearing. This will send everything to a judge who will decide, based on the evidence presented, as to whether it will be covered or not. This stage works very similarly to a court hearing whereby MDs are present and will "testify".
All of this is very time sensitive so the insurance company needs to act relatively quickly. Depending on what credentialing body they use will dictate how fast this needs to be done.
Everyone, this is how all requests for services from your insurance company works. Labs, CTs, MRIs, PET/CTs, drugs, everything.
You can also contact your state insurance commission or insurance Omsbudsman. Their contact information can be found under your states .gov web site.
I hope this information helps.
Hugs to all.
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N01-2NV.....thank you for the suggestions and for taking the time to post them. Very good advice.
I wrote my appeal letter today and still have time to add the FDA article. Peer-to peer review is set for next week. Unfortunately, I had to go through this entire process for IMRT rads that was a lengthy appeal, but I won that. Recently, I had to file an appeal again for Zofran which was denied. I think my insurance company has me flagged!!! A rep from F1 is supposed to call me back on Monday, and that may help. I must say I'm tired of appeals, but will keep filing and submitting. My MO has written a letter of necessity which may help as well.
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Hello all - I am not new to BC.org and always got such support. In fact, We still have a group of ladies called the bCO 2012 girls and that is who I can tell absolutely anything to! So, I am back now and have just been diagnosed with bone mets to the pelvis. My oncologist wants to start me on Faslodex and Verzenio? I just read about both of them and I am terrified. I have clinical depression and quit taking femara about two and a half years after my last chemo. It came down to quality of life and keeping my job or the femara. I have to work (also I want to) I have been struggling with my depression for the last two years and can't seem to get on an even keel for more than a month or so.
Anyway, I just wanted to post and say I am glad to have this group for support.
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Had my Halaven infusion last night. 2 weeks on 1 week off which is a BIG problem for my trip back to Paris on 12/15. My MO is contacting a colleague in Paris to inquire about having treatments there. But I’d have to pay so she’s finding out the price too
Other choice is a chemo the day before I leave that is done monthly. Befote they can administer that one I need to have an cardiogram as it’s a tough one for the heart. Ugh!
This weekend I’m going to Florida to see my folks. Way too much travel but this trips been planned for a LONG time and I really need to see my folks. Dads 96 and step mom is 87!
Wishing everyone a good weekend
Babs
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Babs, will be praying you can get that worked out
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SpicedLife- That sounds like good advice from the MO, and it may sound a little weird, but this treatment is so straightforward and relatively easy that dealing with depression may be the more critical issue for your overall health and quality of life. Take exquisite care of yourself, and good luck finding the life changes that can get you to a happier and healthier place!
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Babs....I hope you find your Dad and Stepmother in good health. You certainly have a lot going on in your family right now but, from what I know of you already, you make good decisions and you know how to follow through.
Hi spicedlife....I hope things work out for you and I agree with Cure-ious that you need to be kind to yourself and do whatever you need to do to keep the depression under control. You're in the right place here. I've found so much support that I feel I can come here and ask for help with anything and also try to give it if I can.
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I just talked to my mo about the MRI last week. I will be starting Herceptin after a muga scan. The progression is significant in one area so I ran Ibrance didn’t work. I’ll be looking to see if any bone mets are having Herceptin Faslodex and Xgeva. I’ ve had Herceptin for one year on my stage 3 ride. Wondering if I’ll need a port. Hoping it works this time too. Now I’m wondering why we are continuing Faslodex. Always more questions than answers!!
Spicedlife. Welcome. Faslodex for me was not as hard for me as femara or Aromasin. But maybe that was because it was 10 years ago. Be kind to yourself ...I’ve struggled with depression as various times in my life. Medication helps and I hope you find a good therapist to help you. This helped me. I see a psychologist who deals with women’s health issues.
Have a good trip Babs. I hope you can get the treatment straightened out before Paris.
Maire0 -
y’all. I’m such a loser. I just don’t want to work anymore. I feel like I’m spending way too much of my life in a 1.5 hour (each way) commute and at work. If only I could afford to quit. It nearly makes me vomit knowing I have to keep working as opposed to doing things I enjoy and being present for my children. It’s not like I’m going to have years after I retire. Ugh.
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Swess- You sound a lot more like a super-hero than a loser!!! And all super-heros get long happy retirements, so don't assume that is not in the cards for you. Hour and a half commute is a killer though, so I hope you do change and find something a lot more workable and rewarding.
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Swess.....you definitely are not a loser! I agree with Cure-ious, you're a hero. I think you're doing amazingly well doing what you're doing but I completely understand that it isn't what you want and I don't blame you one bit for wanting more out of life. I suppose this is an obvious question and one that you're asked all the time and that you've asked yourself, but is there any way at all you could work closer to home? Or find another way of earning an income that doesn't involve commuting at all? I realise you'll have thought about all this but I'd feel bad if I didn't make some sort of suggestion to show that I care about your wellbeing. Even if you stop beating yourself up and saying you're lazy and a loser I'd be much happier. You're being far too hard on yourself. You're a very, very special person to do what you are doing. We're all here to offer support and love and if there's any way at all we can help you feel better about yourself that's what I'd like to do.
So many hugs and lots of love.
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Maire...I hope you get the answers you need. I'm so, so sorry about the progression. So sorry.......
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Bone scan day! Hate this
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Gracie- praying for all good news!
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Gracie thinking of you!
>Z<
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Thanks, Kaption and Z
Now I can only wait until next Tuesday to see the onc and see what he says.0 -
Gracie. Hoping you get good results🙏
Babs
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Gracie...I'm putting hugs for you on more than one thread it seems so you've probably accumulated heaps. I hope it helps xxx
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Gracie- Hoping for good scan results!
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Babs, thanks so much! Prayers for you ongoing! I think seeing your new grand baby would be such great medicine!!!
Leapfrog, I’ll take all the hugs you want to send my way !
Kathryn, thanks so much! Hate that I have to wait until Tuesday, but it is what it is
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Waiting is still difficult! You would think this would get better as we age, but no :-/
I was looking at the taxotere thread and saw that Lynne 12/21, Groovy Wilma 12/11 and Lisa (Into the woods) 12/24 all have December birthdays. They are going through some tough treatment...just passing it along in case folks want to send good wishes on their "days"
Babs, Lita, Dani Artist and Wendy (and others) need good wishes every day! So to you all ...Happy Wednesday! Sending the warmest possible virtual hugs to you wonderful ladies
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