Ibrance (Palbociclib)
Comments
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Moomala- So sorry to hear of your progression. I cannot advise you on A/A. I think there is a Thread on BCO about it. So your lung mets is stable? But bone mets worse.
That is what concerns me. Worsening bone mets. I have been having more pain in the thoracic spine. But with the RA, bone scans are confusing for my situation. I am getting a CT chest, abdomen, pelvis in a couple of weeks. I wonder if they can tell if bone is worsening on CT. And will they be able to tell if it is the cancer or the arthritis. I fear that the bone mets will worsen and we do not do anything about it, if the liver mets shows stable. Blasted RA makes things confusing.
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Pfilt..and curious...thank you I just emailed them. I am in waiting room waiting to meet new MO.
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moomala I'm so sorry to hear that huge hugs from me. We are moving on together!!
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Moomala sorry to hear of your progression. Did you read the thread above yours about a new trial? Sending you a loooong hug.
Tany
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FYI about Judy Perkins who has been free of MBC since 2016 after participating in the TILs trial. (Immunotherapy)
https://www.cancerresearch.org/blog/march-2019/jud...
Love and Happy Thursday from PatGMc
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Moomala so sorry you have to move on from I/L. Hang in there.
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Moomla, so sorry to hear about your progression. So much to sift through. Praying you find the next and best solution.
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Moomala sorry to learn that you are moving on but wishing you much luck with your next regime. Good luck to you Nicole. PatgMc also hope that you are doing ok and thank you as it is always uplifting to be reminded about Judy. I started cycle 40 I/L yesterday but FBC is very low and for the first time my calcium is also low thanks to Xgeva. Heyho and on we go
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Moomala- I am so sorry to hear of your progression. It is very scary when the news first comes. Starting new medications is also scary.
there are several of us who are doing well on AA and there are 2-3 quiet but active threads.
I will send you a PM later this evening.Take good care
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Hope all goes well Moomala and you find the stability you need. Please do keep in touch with us here!
Pat how’re you doing? You spend so much time keeping the rest of us hopeful, I hope you’re managing with your own stuff?
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Ok Ladies.... Get this load of crap !!!!!!!
I am due for my 3 month CT in Oct. Bone scans don't work for me due to the RA arthritis. And PET's have been denied by my insurance unless progression shows up in the CT's --- So far the CT's have been "stable" for bone and liver. So the only testing I can do is the CT's to monitor the mets.
We have been waiting on the insurance company to ok the Oct CT.
My MO's nurse called me this afternoon and said my insurance DENIED my CT and my MO had to do a peer-to-peer appeal between her and the insurance doctor. They agreed to ok the CT.
I don't know why they initially denied it or what my MO said to convince them to change the decision.
I asked the nurse " Isn't it standard of care to do 3 month CT's?". " Are we within the norm to do them?" She said "Yes" 3 month scans for the first 3 years of diagnosis, then change to 6 months.
So..... I hope I stay stable, of course. But if I am still stable next fall ( 3 years ) then we have to change to 6 month scans. !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Ladies that are "stable" over 3 years...….does your insurance say 6 month scans????? And if you change to 6 month scans aren't you afraid of progression that is not getting caught earlier????
I would just pay out of pocket for the scans but the amount billed to insurance is $7,000.00 for CT of chest, abdomen and pelvis. Cannot afford that.
And I don't want to wait for symptoms because I had a 8 cm tumor in liver with no symptoms and liver enzymes in the normal range.
So.... CT is scheduled for Oct 21.
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candy- It must vary depending on insurance coverage, I went from three months to six months and now back to three months based on what the doctors orders, and insurance has complied..
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Hey Chico- 40 cycles!!!!
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Candy, I'm 3+ years on I/L. No mention of extra hoops for MO to jump through to get scans. And that's all it is. The insurance company finds it worth it to see if MO will jump and how high. If your MO had been unwilling to make that call, the scan would have been denied. This is what doctors spend their time doing instead of patient care. Sick. Would it be possible to change insurance companies? This would be the time if year to do it. And you would know what questions to ask a new insurance company. (My MO and my nurse might not have told me about the peer-to-peer requirement. I can't say for sure that it did not happen but I have had several Pets post three years.)
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candy- there was a recent article stating that patients are dying while physicians spend hours on these peer to peer phone calls after insurance companies deny scans and medicines. This was an oncologist who wrote the article. It is disgraceful.
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candy, I went to 6 months scans after 3 years but showed slight progression on the next scan so we were able to go back to 3 months. There are new changes but they are so slight my MO still calls it stable. But it is enough for 3 month scans. Perhaps that is all that’s needed
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Moomala,
Sorry to hear of your progression. I hope you get to stable on your next treatment.
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Moomala - here with you holding your hand and sending hugs. I haven't reached this point yet, but it haunts me on the regular. Please keep us posted.
love,
Philly
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Hi Ladies...this will be a bit long...but I "think" most of you will be happy for David and I and I wanted to share with you all how the appointment went today.
The Lord has answered another one of our prayers. WE LOVE HER!!!!!! OMGOSH SHE WAS AMAZING!!!
When we were waiting for her in the office they send in a massage therapist.she asked if I was stressed..form 1 - 10 I say...well like a 7...my husband looks at her and says...10...she did this like pressure work on me it was soooo relaxing. Then the doctor came in she spend almost 2 hours with us. We closed the office down.lol Seriously everyone but her nurse left for the day. So as far as Ibrance/Let/Faslodex..she was NOT surprised that my MO in NY had me all three...(that surprised me) she actually thought that was very good. She mentioned that as far as those 3 drugs go, it is not that one of those failed. They ALL failed. Yes, she explained that even if one of those would have been working then we would not have see the tumors progress the way they did and especially not in such a short time frame. She also confirmed what I thought...that all of that (the growth of existing tumors plus new tumor), coupled with the fact that I had my skin condition back and pain back in hip and sacrum it is definitely progression.
She does not want to do any more AI's right now. She did say that maybe in the future that can be revisited..but definitely not now. I told her about my appointment with the IR next Thursday and the Cryoblation I would like. She is all for cryoblation but maybe not just yet. Her concern is that if he cryoblates 1 or 2 tumors then I will need a period of rest (the liver) and being off all treatment at that point would be like a month because I am already off now a week...she worries that more tumors will pop up especially since I had a whole new tumor grow in the liver in only a few months. She wants me to keep the appointment with him, she wants to see what he thinks. She has a feeling he is going to agree that I should get to a point where I am little more stable first, then do that but she still was all for getting his opinion. If he thinks I should do it now she wants me to ask him about getting a biopsy while he is in there this way we can get another new Foundation One report. She also talks about the blood biopsy for the P13K. She said that my foundation one did test for that and it wasn't there, however it could have mutated now BUT the treatment is that piquay>spelling) drug combined with faslodex...and I already failed on Faslodex so she doesn't really see the point in going to that first but she will see about getting the biopsy. Then she told us something that neither of my other 2 MO's told us. On my foundation one report a few of my cancers mutations is sensitive to 3 Kidney Cancer drugs!! She said this is where trials come in. She said "ya see I can't just prescribe you these drugs ya know why???, because you're insurance company would say NOPE! BUT, there are trials and 2 in particular that you would fit into and they both explore using drugs that are meant for treating other cancers but that your cancer can respond well too".... I then told her about the trial I heard about on here today CAR-T..(it's along the lines of immunotherapy kind of trial).she took my phone looked at what CURE-IOUS wrote about it..and wrote the trial down. She said she is going to look at the trial get more information on it then next Thursday when she meets with the Tumor Board next Thursday she will get there thoughts as well. Again...she mentioned that she doesn't necessarily want to delay my treatment to put me in a trial yet. We agreed.
Basically her main 1st line attack plan would be Chemo for me and especially with the type of cancer I have and with the way it is behaving. It would most definitely be Xeolda. She said that would be a good one to start with. Then a pretty big thing happened...I told her how my whole life my bilirubin had run a little high and that i was told I have Gilberts Disease. She starts looking at all my past blood work...she says.."ah yes definitely gilberts disease and you know what causes bilirubin to elevate stress....." The only thing I forgot to tell her and also want to mention to you all and ask for your advice and help. Every time I eat anything..even just drink a healthy green smoothie with greens and a piece of apple or pear...and carrot... Little while later I can't breath through my nose...no mucus..just inflamed!!! NO MATTER WHAT I EAT healthy , not healthy...I don't understand how that can be and it happens even sometimes when I don't eat. I take claritan D everyday and it still happens so I know its not mucus it literally will feel swollen??? My husband thinks its stress casuing inflammation and I do not doubt that..and I want to get the Ashwanda> spelling..ya know that supplement but I heard its not all that great for really relieving stress....Does anyone have any other ideas?? I am a freakin stress ball my whole life...I have tried meditation..I can't sit like that my mind is always going lol...
Also I know I should have told her about the inflammation so maybe she could prescribe something right? My blood pressure was a little low though? Any suggestions you all have I WELCOME!! I was thinking CBD?.
When we were leaving she goes "Ok so you go to the IR Thrusday I will research all these trials , tests etc and go to meet with my Tumor Board Thursday and we will meet up here Friday and have a treatment plan to start!" I was like WOW.. I felt hopeful when I left there! Last but not least..thank you all for caring about me...for making me feel that I matter...for answering all my questions..for hugging me and being in my pocket and for covering me with prayer. I am so grateful. AMEN!
Totally forgot she said I NEED TO GAIN WEIGHT.... I was at 93 lbs. fully dressed with boots...even though I am petite..she said I need more weight on ..and she wants me very strong before treatment..to be honest..I am eating really clean..but I don't feel GREAT....at all. I feel good..but not great. So I will have to add in a little carbs I think.
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Thanks ladies. I was VERY upset when the nurse called me today. If this scan would have stayed denied, we have nothing to monitor progression. And I am on current treatment- Ibrance. Crazy. I too wondered about changing insurance companies. I am transitioning to COBRA at the first of the year since "retiring" from job and getting on SSD. But nurse said she didn't think it would matter to change companies. The insurance company subcontracts the authorizations to another company and that would still be the way it would work if I changed insurances.
I pray for no progression, of course. But, good grief, another thing to worry about. I was even thinking of shopping around for lower priced CT's and paying out of pocket for the 3 month one that the insurance won't pay for---me pay 2/year, insurance pay 2/year. But that still might be too expensive.
How can they deny a scan when the patient is on current treatment and Stage 4 ????????????? We all know it will progress at some point.
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Nicole- Sound like you have a plan in place and a good MO to boot. Praying for you that you feel peace with the decisions you have to make and that the next treatment will kick cancer's ass. A massage therapist while waiting, WOW. I am envious. Makes me feel like I am getting cancer care in the boonies.
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Pat Mc- The article you posted-- she is considered "cured" from stage 4 breast cancer?????? That's huge. Is her treatment something that can work for others? How is it determined who can benefit from her treatment?
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Maureen, you can google Judy Perkins and read lots of articles and you can also Friend her on Facebook. She's has no detectable disease and hasn't since 2016. That sounds like "cured" to me! I have a friend who is almost twenty years out from MBC in her bones. She's had no evidence of disease in all that time and has even chosen not to have regular check-ups.
Judy's treatment is not widely available but the fact that it worked for her means it can work for others. I'm sure they're trying to figure out what is unique about it that worked for her so they can know which of us are good candidates.
There was a time when no one thought polio could be cured and then, lo and behold, it was! It's going to happen for MBC!
Love for PatGMc
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Pat,
That is amazing about your friend with MBC for 20 years. Is she taking any type of meds?
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Simone, absolutely nothing! She just lives her wonderful life with the daughter she adopted after her mets.
I have another friend who is years out from mets in her rib, both lungs and her brain. She also has not had any treatment for many years.
There are many people out there who licked this disease before the newer medicines came along. There should be many more of us in this amazing day and age, don't you think?
I plan to be one. Will you join me?!
Love from PatGMc
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Pat,
Yes, I think there will be more women kicking cancer. I'll join you. I have a long ways to go but I know it is possible. I dream of the day I don't need to take any meds anymore.
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Simone, I didn't take anything for a few years after my big chemo plus a year or so of Femara for the MBC diagnosis. I have big plans to one day take nothing but my baby aspirin! I'm glad you're making those plans too, my friend!
I pray that for all of us.
Love from PatGMc
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Nicole:
A great product of stress (anxiety) is CBD. Its natural, legal in all 50 states. Bluebird botanicals makes a great product you should try.
Unfortunately this forum will not allow me to post links so I sent you a PM with the link.
We get the larger bottles as it's a better value but you may want to try it first with the smaller bottle and see how you like it.3-6 drops under the tongue. 20 minutes later you will feel relaxed.
It does NOT get you high, (NO THC). My wife takes it to sleep at night and I take it day and night to reduce anxiety.Hope it helps, I trust it will.0 -
Maureen B,
Judy Perkins was treated at the National Cancer Institute of the National Institutes of Health in Bethesda, MD (near DC, if you are not familiar with the area). I don't think her treatment is widespread yet -- but they are still recruiting for the trial that she had. I looked into it. It's quite intense, and requires some stays at NIH, but they are recruiting. It's a little different from the CAR T trials, I think (from what I could glean). They actually extract cellular material with you, do something with it in the lab which takes some time, and then reinject you with that cellular material which is then designed to take out the cancer cells. This is very much a layman's description, but you can find the trial at clinicaltrials.gov. I think if you search for TIL trials for metastatic breast cancer you will find it.
Bev
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Cure-ious
Yes, CAR T is a one time injection. New for MBC but had great success with blood cancers like Leukemia.
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