Ibrance (Palbociclib)
Comments
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Here is inner wrist. The cyst is on the right of the pic.
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One more view. Pics are not the best, sorry. The cyst is hard to the touch. Non moveable.
The cyst juts out from wrist. The wrist bone is on top of the wrist (below the cyst).
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AirlineGal, that's great that you're getting relief with a chiropractor. My condition involves one vertebra shifted over another and I was told by my pain management doc (who does my injections) for my situation to stay away from chiros at all costs. My only real fix would be to have fusion. I was afraid of that so I tried the injections first and they helped a lot. I function pretty well most of the time.
Candy, It seems like MOs have many ways of doing things. Mine gave me the go ahead for the injections. I haven't specifically asked about dental visits but will run that by her next time. I think my dentist is concerned about mouth changes due to meds for cancer. When I thought I'd be having infusion chemo she warned me of breakdown of tooth surfaces and gave me a special toothpaste. I don't use it but did switch to an electric toothbrush. I guess I tended to brush too hard and had some receding gum areas. Your disc issue sounds painful. I'm sorry you're dealing with that! 😥
Sondra, Sounds like you're off to a great start with I/L. I might have missed it, but have you had any scans since you started?
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Put this in your Hope Chest as it sounds really promising!
https://www.dailymail.co.uk/health/article-7908441...
Love from PatGMc
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Hi, Pat,
This certainly sounds promising. But why, oh why, do these trials take SOOOO long?
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Elana ,
Thx for the info I’m going to look into purchasing the extra insurance! Paying for that would pay be less than my out-of-pocket copays! Thx again !
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That news release from the Daily Mail that Pat posted, I wonder if the UK has any way to fasttrack it if it does well in clinical trials? Waiting 10 to 15 years for it if it works is just too long.
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Trying to catch up on this thread! I am finishing cycle 2 of Ibrance today - this cycle my neutrophils didn't go as low which is good and I get to start cycle 3 on time (with a week off). My insurance allowed the hospital to fill the first 2 cycles of Ibrance but this time is requiring me to use Express Scripts, which referred me to Accredo a specialty online pharmacy that is contracted to Regence or Express Scripts. Accredo referred me to another company that then signed me up for the Pfizer deal so I wont have a co-pay. This is a new process for me as I was not on any prescriptions since finishing 6 years of femara in 2015 (kinda wish they kept me on it but that is another thread!). If I had the hospital fill the rx it would cost me $2000/month. I will check in with Accredo daily until I know it has been fedexed.
BLMike - Your cobra situation is just awful. I am so sorry. Thankful you are there to help your wife through this paperwork nightmare. Please keep us posted. I agree that with life critical drugs there has to be a better solution. Tons of people go on Cobra so you would hope they have a better solution than the patient incurring huge costs and hoping to get reimbursed. Not everyone can afford to do that.
Jaycee - fantastic news about your oncologist. Mine is new to me and she seems really smart but not super warm. So far I feel listened to and she did call me prior to me seeing her because my the entire process of my recurrence dx was such a nightmare (too long of a story for this thread!).
MaureenP- I am also new to Ibrance, just finishing cycle 2. I am still at 125. Cycle 1 my neutrophils were too low and i needed another week off but not cycle 2. Had one mouth sore at week 3 first cycle, and a smaller one cycle 2. I did use the mouth wash this 2nd cycle. Otherwise, no other side effects to report.
Simone and Faith - Great news for both of you on your recent scans! There might be others with great news but I am still getting used to following this group:) You all give me hope.
Wandering - so sorry about your jaw and about your husband. I know when I am really stressed I can get a bit controlling, as if my controlling stuff will actually help control the outcome (which it doesnt). Do you have any kind of therapist or even a clergy member that you can talk to? It might help. There have been a few times in my marriage when I have had to seek outside help, just a few sessions. It always helps.
Thanks for all your posts on this thread - i learn so much from each and every one of you!
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Devine- I read in the paper today that 42.5 % of people with a cancer diagnosis are bankrupt 2 years after the diagnosis. In a country this rich it is immoral. The deal that was made with the pharmaceutical companies around Medicare not being able to negotiate drug prices and the fact that you cannot get Medicare for 2 years after a disabling disease is extremely disturbing. It really is beyond my comprehension.
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Just wanted to share my good news - last week's PET scan just showed up on my portal... "No evidence of FDG avid neoplasm, no change since July 9, 2019." That makes 2-1/2 years of Ibrance/Femara, and 2 years of "no uptake" on my PET scans. My oncologist sent me an e-mail, letting me know. I see her later today for blood work and a Prolia shot, but she knew I was anxious... Whew!
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That's great news, Ciaci!
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Congrats, Ciaci !! 🎉🎊
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Yay Ciaci! Fabulous report!!
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Woohoo Ciaci !!!! Praying for a long run for you on Ibrance/ Femara.
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Cobra update. We're in!! My wife's application was indeed expedited, it's been approved, and we're now covered retroactive to January 1. WooHoo! That's a relief. The next step is to duke it out with them to get reimbursed for the MO visit, blood work, and Ibrance prescription that we had to pay out of pocket prior to Cobra approval.
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Ciaci, great news. It gets harder as we get out further. Each time I say, this is the time I'll get bad news. But no. On we go.
Mike, one step at a time. They may have money and numbers but you and your wife have persistence and attitude.
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Great news Ciaci!!!
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Congrats Ciaci!
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BLMike,
So glad you got that straightened out and it's retroactive.
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Ciaci, so happy to hear your good news. Yay!
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Ginny02: Hope you get good results from looking into insurance options that will help financially. It's hard enough to deal with cancer and the uncertainty of how our meds will work, without anxiety over how to afford them. I'm new to Medicare so my co pay seems too good to be true. Waiting to see what next month's will be.
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Ciaci sooooo happy!!!! 🍾👯♀️
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Has anyone here, had genomic testing with FoundationOne? I'm having a biopsy this month and my MO has agreed to send a sample in.
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Elenas,
I think quite a few women on the board have had F1 reports done. They use a sample of the biopsy tissue if you are having a biopsy done. It's quite an extensive report that highlights mutations in your sample. Medicare does cover it.
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Great News Ciaci!!!!
BL M Ike what a relief with your insurance mess.
Tanya
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Elenas, my MO did Tempus. He will actually be going over the results with me this week. From what I've seen on this board Mayo Clinic switched from Foundation 1 and over to Tempus. I don't know what the difference between the two is or why Mayo Clinic switched but maybe someone will come along that has more knowledge of the tests than I do.
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Ciaci, that's fantastic news! Love reading about all of your adventures in spite of MBC.
Mike, fingers crossed that this was the last of your insurance woes and they pay you back with apologies.
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Hi; Here's another article similar to the one PatMg posted but it says that testing will begin shortly and could be available within a few years. Fantastic news for our solid tumours.
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Seaway - I don't see where the article says that it only works on solid tumors. Also, this article says that the guy hopes that if it works that it is available in a couple of years to patients but is that just their wishful thinking or does the UK have the ability to fast track breakthroughs in medicine to get them to patients sooner or will it have to go through a 10-15 year testing period?
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Congrats to Ciaci, Simone, and Faith on their recent scans. That is fantastic and gives some of us new stage 4 folks some optimism.
BL Mike - glad you got your COBRA issues worked out.
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