Ibrance (Palbociclib)
Comments
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BevJen
IPT sounds very similar to CAR T. Not certain the exact difference. CAR T also extracts your blood, centrifuge to separate the white blood cells, clone them with Stem cells and then add MCU1 protein and finally reinject into the bloodstream.A one time treatment .
I have reached out to Judy Perkins on FB. Looks like she does a lot of traveling so not certain she is monitoring her FB at this moment.0 -
Candy, just as a reference, I never had 3-month scans. Was seen at Sloan-Kettering just after initial diagnosis and scans in July of 2017, and Sloan scheduled me for a follow-up PET in January of 2018. I've been on the 6-month scan schedule ever since. We do blood work every 3 months, but that's it.
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Speaking of scans, though, does anyone else fear progression to the parts that the PET doesn't scan? They do "mid-thigh to base of skull" - but, for the love of God, what about mid-thigh to toes, and the brain?!?! My oncologist says that that's "uncommon", so they wouldn't scan those areas without symptoms (apparently my aching joints and muscle pain in the legs aren't symptoms, they're side effects - but how would I know the difference?)
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PhilT,
My brain isn't working at the moment, but if I remember correctly, the process at NIH requires multiple injections. If I understand CAR T, it requires one. But beyond that, I don't know the difference.
Bev
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Phil...thanks for the recommendation about CBD...I did try it once when I was first diagnosed in CA back in April...and it was supposably a good one but it was like you mentioned 3 to 6 drops under the tongue but I wasn't feeling anything?? It got to the point I was at like 10 drops and still not feeling anything..and I am EXTREMELY sensitive to meds..so I was thinking about getting the one Joe Tippens takes but its like $250 a month but its like the purest form etc...? I can link you to it in a PM if you want to look at it and tell me what you think? Also I was maybe thinking about getting one with some THC (very low dose) in it because I really need to relax..though when I was a teenager I tried smoking pot and I got all anxious and paranoid..LOL I never did it again. I was more a beer/wine gal myself... however at this point I NEED TO RELAX!! The only reason I am against anti depressants is because they can be consitpating and I must go to the bathroom everyday because of the fissure I have.
Anyway let me know if any of you have suggestions..on CBD and THC do I need a script for that for the state of virginia?? I don't know how it works I am sure my MO would give me a script though ?
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Ciaci- I have a friend that is bone only - 7 years - and she gets scans every 6 months. I see you are bone mets, right?
My concern is I have organ mets - liver - and Grade 3 with a high Ki67 index. My liver met was 8 cm when found with no symptoms and liver enzymes on blood test normal.
YES I fear progression to where the CT doesn't cover. Brain and extremities. I too have a lot of joint/bone pain, but I also have RA and use the AI med. So the docs say the pain is the arthritis or Letrozole use. Progression??? Who knows. And it does worry me that it could travel to brain and we are not scanning there.
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Candy..please ask your MO to monitor your liver mets with MRI. I get scanned every 3 months, but alternate between liver MRI and bone/CT scan. So basically, every 6 months for liver MRI and every 6 months for CT/bone scan. I have IDC, not ILC.
I am on the traditional Medicare and have had no problem so far with approval of these scans. I did just start my 4th year into the mets dx, so we will see.
I have never had a PET scan.
Edited to add that I had brain MRI at diagnosis Oct 2016. Unless I have symptoms, I will not have another brain MRI
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Candy, yes, you're right, I only had met to bone; didn't think about that aspect of it. By the time of that first scan, the tumor was undetectable, and the lesion on my spine had healed. Maybe that's why they only required six month scans; I've been NED since that first follow-up scan, as well.
Re. Scan areas: Extremities may not be "common" (as my onc says), but I've known a lot of people with brain mets, and that's what makes me nervous! Every one of them did, however, have symptoms, so I keep telling myself that. Of course, every headache makes me wonder if this is it...
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Nicole, I PM'd you the brand to purchase. Problem with CBD is there are MANY "watered down" versions out there. You really are wasting your time if you go to your local grocery store and buy what they have.The stuff I suggested is 3000MG per ML. The stuff you get in the grocery store is maybe 100MG. Of course it MUCH more money but taking 3 drops a day, it will last you for a long time.
You can not overdose on it but I would start off with three drops, hold it under the tongue for a minute, it tastes and looks like tar but you get used to the flavor. Wait 20 minutes and see how you feel. You should feel everything loosening up, muscles will relax and you anxiety will disappear. Don't take more than you need, simply due to the cost. No other reason.0 -
Ciaci...I have only had scans every 6 months as well. I do get blood work monthly though.
Nicole...be careful of any CBD oil you use. There are synthetics in most of them. Why not apply for the medical marijuana program? There are strains that have very high CBD with very low THC.
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Thanks Phil..yea the one Joe Tippens uses is really good too I guess that is why it's sooo much money.
Jackie yea..thats what I was wondering about (asked in other post) I guess I just ask my MO about it?? We live in VA and I don't know how that works here?
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Nicole, sorry if I missed a previous post of yours. Sometimes I scan quickly and miss things. But yes, ask your MO. That's what I did. He referred me to a MO in the same practice (different location) that specializes in it. I use the actual marijuana flower and vape it (don't worry, it's not the same as the stuff that people are dying from on the news). I don't like the high feeling either so I make sure I use a strain that has high CBD and low THC. For me, nothing takes away the pain completely but it does help a little and it does relax me and help me to sleep.
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Re: Concern over time between scans for those with bone mets
You can get a referral (or self-refer if on Medicare) to an orthopedic oncologist and see him/her on a schedule that alternates with your regular scan schedule. They do routine x-rays so you're getting a look at your bones every 3 months.
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Pat- Good to know. I don't have an orthopedic oncologist near me. Would have to travel. And I want to check the liver mets also. Maybe Liver MRI and bone xrays alternating with CT?????? Seems like more trouble for the insurance company rather than just saying ok to the 3 month CT's. But gotta do what ya gotta do. Will file the info for later need.
Pat how are you? You have bone progression right? Move from Ibrance?
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Candy, I do have bone progression and am excited to be starting Lynparza, a PARP Inhibitor as I'm BRCA+. I've been wanting this drug for a long time and am so happy it got approved for MBC just in time! My onc says I have the option of returning to Ibrance should I ever need to. (I had 3 successful years with it.)
I learned something about insurance companies from a man who was CFO for one. He said they turn down many pre-certs knowing they will cover them when appealed. Every day they delay means their money stays with them a little longer. My oncologist has an employee who won't take No for an answer and I've been able to get a scan any time she asked. I suppose she's worn them down. I also got approved for Lynparza within hours which shocked her.
Love from PatGMc
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Pat- Praying that Lynparza will be a good treatment for you and you will get many years from it.
I do not know what reason my insurance company had for the denial or what my MO said to convince them otherwise. I will ask at my next appt. If I am still stable with this CT, I wonder if the insurance will deny again in 3 months for the next scan. And how many times my busy MO will want to fight them before she just says ok to the 6 month scan schedule. Or when the insurance company just puts their foot down and won't give an ok. Scary. My life is in their hands.
Keep posting here to tell us how you are doing.
Hugs.
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Ladies,just FYI re scan frequency... I only had 2 x 3 month scans and then swiftly to 6 months... second one of these on Nov 5th. I did hit NED after the second 3 month scan, so they stretched the timescale in order not to radiate me too often. We’ll see how Nov goes....
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I'm a lurker and it's so quiet here. I'm so sad today.
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dutchiris,
It has been very quiet today. What's wrong?
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Some opinions expressed by some family members at a gathering have me feeling like I'll be a burden to society if I become unable to pay my own way (e.g. getting SSDI). I still work full time and then some and have done so all my life. I'm feeling very alone and can't talk to my family about it.
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Dutchiris-Please do not let those family members take away your joy and peace. It is absolutely none of their business if you should choose to go on SSDI. I am on it and in no way feel like a burden to society-in fact I feel like I am a blessing! First of all, I paid in to SS for numerous years and will likely not be living into a ripe old age of 90+, which is what I thought my life expectancy would be before MBC. I personally feel I deserve to benefit from this program now when I need it. Second, I feel like I am a blessing to society because with my flexible schedule I can volunteer and also help out friends and family members when they are in a pinch. I have time and I can use it, if I choose, to make other people's lives easier.
Cancer has helped me so much to learn how to take good care of myself. Now that I take good care and value myself, I find it natural to step away from or avoid people who seem not to value me. Fortunately my own family has been fine with me getting SSDI-I was anticipating comments from one brother who instead has surprised me with his care and compassion.
I'm sorry you are feeling sad tonight-it had to have hurt to hear those things. But consider the source and please do whatever you need to take good care of yourself.
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Dutchiris- I am here. Reading if not posting much. Quiet Sunday here.
So sorry your family made statements that hurt you. I too get SSD. Just started last month. I had a hard time too with feeling like I was getting a "Government Handout". "Disability" in my rural area has connotations of able to work but does not. Mooching off the Government. I feared people would think that of me. I have worked since I was 15. But then I changed my thinking. I worked since I was 15. I put in to Social Security and now I need it. I don't need to feel ashamed. When I told the nurses at my Cancer Center, they were very receptive and one nurse hugged me and said it was ok for me to concentrate now on other things but work.
Family can sometimes disappoint us. Mine do. I go to my appointments by myself. My family doesn't know what meds I am on or when my scans/ doc appointments are. I am sorry your family upset you when they should be supporting you.
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Yep, government handout. Money taken from hard working people and given to people who don't want to work. I paid in too but doesn't seem to matter. I have so many angry things I wish I could say but I won't. I do see the hypocracy in what some of them say. They must forget that I've known them all my life.
The good news is that I'm off most of this week. However I have bone scan, labs, and CT on Tuesday and a bone biopsy and MO appt. On Wednesday.
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dutchiris,
I also get disability and I feel the same way Candy and Chicagoan. I've worked all my life and I deserve it. I am sorry someone in your family said that to you. You've paid into Social Security all these years why wouldn't you be able to draw from it if you need it.
I hope they apologize to you.
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dutchiris, I with the others. I was in SSDI until I reached the max and am now on SS. I have worked since I was 15 and have always paid more than my share. I would still be working if I could. I am sorry you do not have the family support you deserve. Some day their opinions may turn into reality and then they will realize how hurtful they have been. This is the time to take care of you. Sounds like you have a busy and stressful week ahead. I pray for great results and that you will find a friend who will care for you more than your family. All of us on this site do
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I don't want you all to think I have no family support. I have two sisters who will go with me to appointments an hour away. We all work in healthcare in some manner. I have three children in their 20s who are supportive. I was just recently diagnosed and have a few, small, minimally active bone metastases. No one would be able to tell anything is going on. I don't need much help right now. But I really don't need anyone who will make feel less of a person for getting by and using the resources that are available to me.
Thank you for your support
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Dutchiris , are you kidding me ? That’s awful that someone would say that! My husband had terminal. colon cancer when he was 57 and didn’t start SSI until 7 months before he passed at 60. And what happens to all the money that he put into social security for for over 40 yrs, and never lives to get a penny of it? The government keeps it !
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Dutchiris- I am just now logging on site again. I hope today goes better for you. Praying your scans, biopsy, and appt go well. Report back to us after all of them are done, if you can. Hugging you from here.
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dutchiris, Do your extended family know/ fully understand your diagnosis? Maybe to them you look 'too good' to be ill ?? Perhaps your lovely sisters could give them some more detailed information . I know I lost a few ' friends' who, for whatever reason, could not be supportive when I was diagnosed with MBC. You need to be a bit selfish/ egocentric and look after yourself, you deserve the best care and if that means not working so be it. Hold your head high, all you will be getting is what you deserve after paying in since you were 15.
I didn't mean to rant, but I get so cross when people are unkind, particularly when a person is in a vulnerable position and needs all the love they can get. Good luck this week ,we are all wishing you the best.
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Hello all
Worked since 14 at real job. Was working 2 jobs at 59 when I got this stage 4 diagnosis. If you can’t say it then get someone to say it for you. Fill in the blanks- F you kiss my ___ a__. Say it a few times it’ll make you feel better or make you laugh when you picture what their faces will look like to hear that come out of your mouth.
Tanya
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