Ibrance (Palbociclib)
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Penny, NO kidding, we spent so much time and energy getting excited for Alpelisib, now I dread finding out if I have the PI3K mutation, because I don't want to have to consider it!! Hope I'm wrong but it sounds awful
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Pat, How long does it take to make an art piece! I would think forever but you just keep producing! And its so exciting, what are you making next?!!
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Oh PatG, my paintings are nothing compare to your creative art works which are so impressive! Always wanted to say thanks to you for your words of courage when we need it the most
But in hopes of bringing some smiles to you all. Here is the painting
I have a long story of a cardinal that came to visit me the moment that I swallowed my first Ibrance pill. He was beautiful and sang to me everyday that day onward. He gave me a lot of hope and inspiration. It was then that I started painting and especially love birds
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Question- My insurance has denied me a PET/CT scan, what do I do about that? What does that even mean? I haven't been scanned since January, so how long do they want me to go?
I need to get scanned before COVID gets me! It's one or the other, surely, many roads to my demise
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Cure-ious,
That's really strange. Did they give a reason? Maybe they think you are "too stable" to need quarterly scans and want to put you on a longer time frame in between scans. I have heard that sometimes if you have been stable for a long time the insurers may want to change the schedule. My MO just switched me to every 4 months-she wanted to do it 2 years ago but I resisted. I'm going along with it now but we've seen how quickly things can change for our friends. I was able to get my scan in April despite the Covid restrictions-I was practically the only patient in the center. I get bone and CT scans. The techs told me that their hours had been cut-everyone was switched to part-time. Some picked up extra shifts screening people as they entered the hospital. Hope you get some answers.
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well my insurance switched to Medicare and a retiree health plan, so that is probably it- however, I do need scans. perhaps my insurance would prefer I die of something other than cancer, but ignoring it seems an unlikely way to go- normally I am every three months, this scan is late because of COVID everything got behind in their office, and now this
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PatgMc - when you quit Prilosec (omeprazole), did you quit it cold turkey? I was put on it about two years ago when I had all sorts of gastric issues and finally got diagnosed with Celiac disease so I had to give up gluten and the gastroenterologist told me that I should keep taking it. I won't have to see him again until I need another scope or some other gastric issue comes up but after going gluten free, all of my digestive issues were pretty much healed. I asked my MO if I could go off of the omeprazole and he said yes, just stop taking it daily and only take it when I have reflux or gerd going on. I was not sure if you need to get weaned off of it instead of just stopping.
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Cure-ious,
Re Medicare and PET scans -- we've had this discussion before on one of these threads but I can tell you that when I was with my previous oncologist, I had two PET scans -- one in October 2018 and then one in May 2019. I never heard that it was an issue. I have Medicare and a supplemental plan. At one point, I read the Medicare benefits stuff, and I swear I read that Medicare allows 3 lifetime PET scans, but then I remember that someone else on the boards posted that that was baloney -- that you can get them if there is a reason and your MO says there is a reason. My current MO has told me that Medicare won't pay for it -- I don't know if that means that they really won't pay or that my MO's office doesn't want to argue with someone about it.
I think the fact that you are stable may affect whether or not you will get it covered.
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So what do you get normally for scans, then?
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Cure-ious,
My current MO uses CT scans with contrast. My prior MO also coupled that with nuclear bone scans. My last one was May 2019, and I asked my current MO about it and she wrote an order for it but then COVID hit, and we have put it off because you have to hang around the hospital or wherever for some number of hours to wait for the nuclear tracer to make it's way through the body for the test (I didn't want to hang in the hospital and wait).
The other scans that I've been having are MRIs of the abdomen with contrast. But those are for my interventional radiologist, and focus primarily on my liver because I have liver mets.
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OH, good to know, thanks!
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Cure-ious , if it’s worth my two cents. I got a PET/CT at the beginning but have regular CT scans every 3-4 months. Onc going to request Medicare cover a PET again for my annual assessment but only if my quarterly CT’’s shows progression. Ever heard of only 3 Pet’s in a lifetime even though the PET/CT is costly
Ask if you can get CT’s quarterly?
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Cure-ious that's a very a high bar. But what an important one! ;-)
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Re: PET/CT scans.....I chose not to have routine scans when I wasn't on MBC treatment for a few years but have had PET/CT scans regularly since the widespread bone mets were diagnosed. My onc has someone assigned to fight the battles for scans and she says it is indeed an ongoing skirmish. If you think about it, every day the insurance companies delay saves them money. I have Medicare and a Mutual of Omaha supplemental policy. So far, so good. I'm awfully sorry some of you have delays like this adding to your anxiety.
I met a man years ago who was the CFO of an HMO and I asked him to speculate on why my breast reconstruction surgery had recently been approved while the mastectomy right before it was denied. He laughed and said essentially this, "Just give it a while. They know they're going to cover it but they've paid out all the money earned on investments for the quarter. You don't even have to protest, they'll just put your claim back in line and it will be paid." I was foot-stomping furious at the callousness of that system but it's exactly the way it played out.
Thereishope, I love your beautiful birds! It takes so much skill to capture nature like that and you should be very proud. Thank you for the lovely compliment. I've learned to accept that some of us are just lunatic artists and must just roll with it. It looks like my sixteen-year-old granddaughter has inherited the gene and it's kind of fun to see that play out! Keep posting your wonderful work here to remind us of God's amazing world!
Cure-ious, thank you for the addition to our Hope basket today! Those trials sound exciting and I shared your words with my husband to keep him pumped up. Thank you too for the sweet compliment about my art. I'm incredibly slow but I don't pressure myself to speed up. The pieces I've shown here are very small as I don't have the stamina to stand and do big ones these days. I'm just finishing up this one in memory of John Prine, one of my all-time favorite singer/songwriters. He died of COVID-19 which is just heartbreaking after surviving several bouts with cancer.
So here it is. "Love from 10 Miles Away: Ode to John, Donald and Lydia" 12" x 12" Mixed Media on Canvas. #2 in the Lockdown Fever Dreams series. (The cat has taken up knitting since I snapped this picture....cray-cray! The birds in my pieces are the quiet, sane ones just wondering what planet the artist came from!) If you don't know John Prine's music check him out on Youtube. Donald and Lydia is a hoot!
Love from PatGMcNuts
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Cure-ious, I have switched to Medicare also but my supplement is through my former private employer which uses the same HMO I was on before Medicare. That is probably why I have no problems getting the PET approved. It is one of the flaws with the US system--the inequities of coverage. I think we had this discussion a few months ago? But I am sorry for those who struggle to get what they need medically. It is not right. We have enough struggles as it is!
Pat, love the picture and the tribute.
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Cure-ious coverage for my last set of scans was initially turned down — apparently I am “too stable.” That was very quickly reversed when my MO appealed
Pat, I went to bed last night thinking about *your* art and planning to start the day by asking you to post something. You read my mind! I am always in awe of what you can create. Thank you!!
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Pat, Love John Prine. I'd like to see your artistic take on "In Spite of Ourselves." Maybe you should have a John Prine series.
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cure-ious, my insurance initially denied my radiation. My RO called them and spoke peer-to-peer with them and got it approved. Maybe your MO, or whoever ordered the test, could call them.
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I don't get PET scans anymore. My MO said that the insurance company will try to fight it so I get CT scans (just oral contrast) and bone scans.
Ladies...beautiful paintings!
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Thabks Sunshine and JACK5IE, I'm giving them time to fight it and am happy to know they can at least do the CT scans
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Curious- I have Medicare advantage through kaiser- I have only PET scans - I heard that kaiser and blue cross do PETS- they have decided apparently “I heard” on these boards that overall it makes more economic sense to go straight to the PET. I also heard that bone scans don’t show ILC well-?
I also heard from someone On BCO who looked into it deeply - that they aren’t actually DENYING your PET- they are telling the doctor that they will pay for a CT. Then then the doctor tells you it was denied ( because essentially it was verbally at least) If you ask your insurance for a WRITTEN denial- they will demur and cover the PET.I don’t have personal experience - just read it here.
Let us know what you find out.
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aprilgirl1 - genetic testing, check with your insurance. 8 months ago my oncologist ran a check for BC ( this is the 3rd time for me). Over 20 looked at, none found that are known to play a role in BC. I just got the denial for coverage ($1500) from my insurance, claiming it is not relevant to my diagnosis/treatment. I talked to the company who did the test, and they are appealing the decision by the insurance company. The patient advocate for the cancer center said there are 2 levels of appeal, and even if insurance continues to deny coverage, for test like this, the company that runs those test would probably reduce the cost to 1-200$.
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Jack51E - it seems like my oncologist said something similar about PET vs CT and what insurance will pay for. She also said that PET finds activity, but CT good for monitoring and evaluating the effectiveness of treatment. It scares me to think that my body keeps making cancers. This is the 3rd time for me, and even though the oncologist thinks each incident is a new cancer rather than recurrence, when pressed, says there is no way of really knowing. So it seems like a PET scan now and then (every year? every 2 years?) might be a reasonable check? Also had a genetic test run 8 months ago, over 20 markers checked, I have none of them. My insurance company just denied the claim, saying it was not relevant to diagnosis or treatment.
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Thanks for the sweet comments, my friends. One day I'm going to do a piece about us! Not that you don't inspire me everyday but I'm waiting for the perfect thing to come into my mind! ("Sittin' on the Brink of a Cure"?!)
Jaycee, I love the singer who does that song with John Prine! It's tempting to do something with their noses off! I never saw that movie he did with Billy Bob Thornton. Did you?
Happy Mother's Day, everyone! I got a gift card to the Container Store and can hardly wait to shop. I'm as disorganized as they come but love all that organization paraphernalia. Go figure!
Love from PatGMc
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The woman who sings that with Prine is Iris DeMent. She's great. The movie is a comedy called Daddy and Them. Prine and Thornton play brothers and Andy Griffin plays their father. What could not be funny about that? No, I never saw it, though.
My Medicare and BCBS supplement pays for Pet as often as MO wants it. He wants three months. I do four months and this time, I am close to five. I'd like to get to six. To get something approved by insurance, a doctor has to know how to "justify" it. Some do. Some don't. Some are willing to put in the time. Some aren't. I know. They have to ration their time. Not their fault.
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PET vs CT approval discussion--- My insurance has denied PET's unless my routine CT's show progression. Then PET oked. This happened Fall of 2019. CT showed slight increase in liver met size. So insurance allowed PET to check on it. Prior to that, I wanted a PET at 1 year anniversary and insurance denied due to CT's being stable at that time.
I have CT's every 3 months, but this last insurance approval letter (getting CT May 20) stated next CT will be 4 months not 3 months. So if the May 20th CT is stable, I guess we will go to every 4 month scanning. I have not discussed yet with MO--just read the letter insurance sent to me. Love that insurance companies make the rules, not your MO. I hope they don't change to every 6 month or longer scanning. I am scared something will change and we will not be on top of it.
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Jaycee59- love his song “hello in there” also.
your supplement is blue cross/blue shield which goes along with the person who says kaiser and blue cross do PETS. I try to put them off if TMs are good- it’s worked so far.0 -
Nkb, thanks for making me 10 years younger.
My favorite is Sam Stone but I have lots of favorites. Paradise, Illegal Smile, Angel from Montgomery. So many great songs. What a treasure to lose.
I'm glad to hear I am not the only one who tries to put them off.
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I used to put the PET scans off for 6 months but that little skull "French Foreign Lesion" has me back at 3 months with Brain MRIs also squeezed in between. It's amazing what I've cost Medicare and Mutual of Omaha!
Jaycee, those songs are my favorites too. Please Don't Bury Me is another that gets me smiling and singing! That last album was full of good ones too.
Love from PatGMc
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Love John Prine too. Speed of the Sound of Loneliness is one of my favorites for karaoke. A friend of his that has also passed and was a great songwriter was Steve Goodman (City of New Orleans). Music helps us get through so many things. Hope you ladies all have a great weekend. I go in for Herceptin and Perjeta Wed. and also see my oncologist to see how my Ibrance is working on my other cancer. Tumor markers crept up last time so anxiety is setting in. I've been back on it for almost four months now so am hoping it just took a little while to kick in.
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