Ibrance (Palbociclib)
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Happy National Cancer Survivors Day, my MBC sisters! We made it to this milestone and I expect to see all of you here for the 2020 celebration. We are pioneers who are going to see the end of cancer's siege.
I pray for all of you every day and I'm thankful for your great courage. Every time you put a pill in your mouth or drop your drawers for a shot, you tell your body you're in this for the long run.
I love each and every one of you.
PatGMc
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PatgMc and others---HAPPY NATIONAL CANCER SURVIVORS DAY. I do hope for a cure. And I am thankful for Frisky and others involved in Clinical Trials to find the new drugs to help us.
So I just came from my MO appt. She asked if I had any other TIA symptoms and I told her no and that I am seeing neuro doc next week. And other than that, I am not experiencing anything any different. I guess the MO just concentrates on the cancer and those treatments from the way the discussion went. Each specialist in their own bubble and not to step into anothers' areas. She will see me again after next CT--due mid July.
Then I brought up the subject of SSD. I have asked you all for advise and I have discussed it with a trusted friend, but this was the first time I mentioned the subject to the MO. She asked if I could drop down to part time. She said she didn't want me "just sitting at home"--her words. I explained I was thinking of this as retirement and have some ideas for volunteer work to stay busy. She then mentioned someone we both know--well known in our community. He has had Stage 4 cancer for 6 years, is on IV chemo, and is very open about his situation. He is still working full time. I know that we are all different and what is right for him may not be right for me. But this is what I mean about my posts----I will be judged by others if I quit work. Tongues will wag behind my back and comparisons will be made. I am probably going to go ahead with the SSD process, but I hate thinking that I feel I have to explain myself to people.
I just wish I never had cancer and that my life was "normal".
Hope everyone's day is going well. My plans are to do some housework and pay some bills.
Hugs to all.
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Candy, why do you have to explain yourself? Why do you care what people think? I was just telling someone in a PM this morning how I feel like I don't fit in here anymore. I don't hunt online for new drugs or a cure. Does anyone else feel like this? Am I alone? I am doing all the things I enjoy every minute of every day. When I posted about SSDI's Compassionate Allowance for MBC, I got silence. If you acknowledge that we deserve a compassionate allowance, is that blocking the door to denial? Sorry but I just needed to say these things. I may get silence again.
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Jaycee--- I appreciate you !!!!!!!! You are my friend in all this cancer crap.
I don't have to explain myself. This is my life and the choices I make are mine to make. But I am also human. And I hate thinking that people I know, in this small piece of Earth that I live, will think ill of me.
You do fit in here, just as much as everyone else. Everyone is different. Some research, some post pics of family, some like me post about the same things over and over and you all are probably thinking " Poop or get off the pot already!!!".
I am glad you posted about Compassionate Allowance for MBC. It is the truth. Our situation is what it is. We cannot lose hope and we must continue to do everything we can to prolong our lives, and live our lives to the fullest. But we must face our cancer with truth. That is how I feel about it. I am not dwelling in the mire of my diagnosis. I am just accepting it for what it is.
Please stay with us here and keep posting. We need you. I need you.
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Candy, I agree with Jaycee. You are the one who gets up everyday and only you know how you feel. Everyone is different and responds to the meds differently. I am not sorry I went on disability. Friends who are worth it will support you in this. I think it is worth the fact that I don't need to stress the very moment I wake up as to whether today will be a good day or not (it varies for me). I can choose to relax today or get up and go. I believe it has helped me keep my emotions more stable. I have worked since I turned 16--even while raising 3 kids-- (and I am 66) so I deserve my retirement time. I don't want to spend any last years I feel even barely decent struggling at work. We are worth it!
Chris
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IntoLight--- That is what I am thinking--- more relaxed schedule. Those days I feel good, maybe the volunteer thing. Those bad days, stay at home. But I am a schedule oriented person, so I will need to have some sort of revised schedule---plan this for this day, that for that day. And I want to feel I have things to look forward to, a purpose. But not the full time workload with no bending for when I feel bad. Now I am scheduled for work and I am to show up and give it my all, no allowances for my health issues.
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Thanks Candy and Chris. This is one thing I like to do. Find things like this:
It's a financial assistance program that helps with transportation costs to doctors' appointments and pharmacies. I wish they had a better way to get the word out.
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grateful for everything I learn here, even what I’m bookmarking for later ❤️ We’re all juggling different lives and challenges.
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Jaycee, you wrote: " I don't hunt online for new drugs or a cure. Does anyone else feel like this? Am I alone?" Just wanted to let you know that, nope, you're not alone. Everyone deals with this in their own way. My way is to trust my oncologist, and let it be. I have no clue what my MBC genes are, what mutations I may or may not have, what inhibitors are involved. It's all like a foreign language to me, that at this point i honestly have no interest in learning. I know my onc. did lots of testing with my blood work, and I figure if anything comes up, she'll let me know. In the meantime, I'm feeling good and enjoying myself.
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Jaycee,
You don't know me, but I enjoy reading your posts. I can understand that if you've been taking I/L since 2016 that you've become less interested in searching for more "cures." Let me just say that I just started I/L two months ago for a recurrence, and seeing your posts have been encouraging to me. I really like the fact that you had progression - like me - and you've been able to be stable with I/L for so long. So you may not realize that there are others out there who appreciate what you're writing but staying in the shadows.
Kitkit
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Curious-My oncologist takes the approach discussed in the video. I am usually grade 3 neutropenic but with no fevers and am not getting sick, so we have stayed the course at 125 with 3 weeks on, 1 week off. I'm glad to stay on treatment and not be taken off for what they call "paper numbers."
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Candy-I think your doctor has some bias about people "not working." Like you, I am single and started working as a teen. It took a little while but I have found a new routine. I volunteer quite a bit, exercise, cook, care for my home and enjoy life. I don't feel guilty at all because I have put in years of earnings into the social security system and will likely not live now into my nineties! You need to do what is right for you, not what your doctor thinks is right. If someone has a job they absolutely love, great co-workers and a flexible schedule, maybe it does may sense to keep working. But if not? Remember, once you get set on SS Disability, you are allowed to go back to work part-time and make a little bit of money, if you choose to do so. I haven't-I think I am better off the way things are now. Without working, I find I can spend less money-I try to eat at home, avoid wasting money on "coffees", etc., I drive less, need fewer clothes, etc. People in my life know I am on disability-they also know I have Stage 4 cancer so I don't think anyone judges me. I have worked hard for over 40 years so I feel fine about this. I get uncomfortable when new acquaintances start prying as to why I am not working-I usually end up telling them I have cancer-that shuts them up!
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Thanks Chicagoan and all. I do think people have a bias about "not working". Our area is financially depressed and there are a lot of Medicaid recipients in our area. I am not judging, I may need to apply for Medicaid also. But that mentality is strong here. "On Government Assistance, getting a Government handout, etc".. And in Healthcare, "the Medicaid people vs Insurance people". I agree if I had a job I loved, great co-workers and boss, and a flexible schedule I would probably not be looking at SSD right now. But I don't. My workplace is toxic and I will definitely not miss it. I am looking at this as early retirement since I will probably not be around at regular retirement age - 67 for my age group. If I get 10-15 years of "retirement" I will be lucky.
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Jaycee, you fit in here! I find value in your posts and appreciate all of the things I learn! I'm constantly trying to read and keep up but that's because when I was early stage I was a passenger in my care and not a driver. There's nothing wrong with that I'm just trying something different this time around. At the time I had a baby, a career then cancer came. I thought I would be "cured" so I would just tell my providers to tell me where I have to be and I'll show up for treatment. To give you an example, I'm embarrassed to say that I had reconstruction and I do not know if I have saline or silicone.
Candy I know we PM’d but don’t feel guilty about disability. We now live our lives in 3 month increments and things can change very quickly.
I have a question: has anyone ever gotten a second opinion BEFORE they had progression? I went to Hopkins last week to see what would be good options for next treatment, to discuss clinical trials/mutations from Foundation One report.
I left with ZERO recommendations. Is this normal? Maybe you only get recommendations once you have progression but I wasn’t able to even discuss her thoughts on things. I was just told it’s not “proven”.
Cure-ious I sent you a private message because many of the abstracts I printed cane from you-thank you!
Also, is anyone active in the stage IV MBC group? Or do you find it helpful? My invitation has been pending but I’m just curious if it’s even worth it. I’m not a FB person so I’m using my husband’s account.
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Thank you all for the support. I hope I wasn't shamelessly looking for it but it still feels good.
Candy, Chicagoan had some very valuable info in her post. I have tons of info to send you but I will do that by PM if you don't mind. I have helped several people on my MS forum to apply so I wrote out a bunch of stuff that I have saved.
Just to clear up one thing that some seemed confused about, that different states handle the SSDI applications differently. When I applied (2004), it was taking forever (which is normal) and I kept calling to try and find out what was going on. My local SS office at that time did not answer the phone, EVER. (DH had great luck with them about ten years later when he applied for SS.) Then I wrote letters. I finally got a letter from them that said, "your file has been selected for federal review." I will never forget those words. That was the best thing that could have happened to my "file." States seem to make the decisions on who gets approved. My state was denying too many applicants. The feds were not happy. I was approved soon after. Because of this experience, I tell people that states handle things differently.
That thing about applying online? Your stuff going to the wrong place? I suspect that that myth was spread by the lawyers that make money helping people apply. You do not need a lawyer. I applied online. Not difficult at all. Just think of it like a new job. I would try going to your local SS office first and see what kind of organization you are dealing with. At my office, you can make an appointment so you don't have to wait to see someone. Ask them about that figure on your statement and how close that will be to what you end up getting. But just because you are there, don't let them push you to proceed too quickly. Tell them this is a fact finding mission and you still have more facts to collect.
One more very important point. What you get for SSDI will be what you get for SS at 65. That surprised me for some reason. I have been working since age 15 too so I was under the optimistic misunderstanding that my SS retirement would be more. Nope.
(SSDI is Social Security Disability Insurance)
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jaycee, I value your posts very much and you’ve taught me quite a bit about Ibrance. The links you provide for Medicare payment assistance and the compassionate care assistance are very important. I’m sorry if no one responded to your posts when you share the links. I haven’t needed the assistance yet but believe me, I will tap in to any and all financial help when the time comes. Plus I know if I have questions, I know you will be helpful to get answers.
No, I never look up cures or clinical trials. And I’m usually the one admitting I don’t understand the medical jargon used when all the different treatments are explained. I, too, go about living life.
Chicagoan, your post is has great comments about collecting disability and I agree with everything you’ve said.
Novagirl, I don’t follow FB groups about mbc, this forum is my main go-to.0 -
Novagirl-- I did get a second opinion when first diagnosed with MBC. That doc said what my local doc was doing - Ibrance and Letrozole - was what they would do. That validated things for me that we were going down the right path for that time. I later questioned if I should follow up with the second opinion facility - keep them in the loop with scans, labs, etc. The second opinion place said there was no need, they would be happy to see me when progression time came. So far, no progression. But I do plan on seeing them then, just to validate things again. I am not on any other MBC groups but this one.
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Novagirl, what I like about getting that second opinion going BEFORE progression is that you've established yourself as a patient at Hopkins so that if/when you need it, you are hopefully going to be able to access it faster. That they didn't give you any thoughts about what could be next - even if it was just about trials showing that it's often the AI that fails, so one can go to Faslodex + Ibrance, or the trials for patients going from one CDK drug to another - is ridiculous on their part.
ETA: I'm in the FB group. It's okay. Seems to be more for support, which is great. I ended up snoozing the page because I was always getitng alerts for the page and MBC just seemed to be too present during my day. Now, I look at it once or twice a week. I've learned so much more here and there is considerably less drama here.
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Hi Nicole - I am no longer on Ibrance (had a good 2-year run on it) but never had mouth sores. I’ve been on a couple of infusion meds since which were not effective. I am now 2 treatments in with Doxil. This drug has caused HORRIBLE mouth sores. Do you recall the name of the “Magic Mouthwash” you were prescribed? I want to be as specific as possible when I call my doc.
Thanks so much for your help.
Bridget
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Bridget, my oncologist's office calls this Magic Swish. Some say Magic Swizzle. It's by prescription only and is mixed on order at the pharmacy. When I last had a prescription called in for it there was a shortage of one of the ingredients which would have delayed it for days. I decided just to cancel it.
"Magic mouthwash is typically compounded by a pharmacy and most often contains anticholinergic agents such as diphenhydramine (Benadryl); an anesthetic, such as viscous lidocaine; and an antacid or mucosal coating agent, such as magnesium or aluminum hydroxide, kaolin, or sucralfate."Love from PatGMc
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Just checking in... busy place! Jaycee, knowledge is power and you, Pat, Curious et al have plenty. We learn from each other.
Moderators I do wish we had a Button to indicate when we've read a post and appreciate it, maybe not a Like button, but something similar??
Candy I'm in a similar boat re work, but older than you at a whole 54! I have plenty to offer, but full time in a high pressure job is exhausting. No point in going part time as almost as well off with my pension....state pension at 67 same as you...my generation got stuffed on that...it was supposed to be 60 for the first 25 years I worked! Getting ducks in a row just like you and also firmly planning what next... I know if I get full incapacity pension I cannot do any paid work, but partial means I could do limited paid work.... but it's a huge drop in pension and lump sum.
Planning my new life, such as it may be and I've had offers.. they will be solely on my terms!
Brilliant news on scans everyone...I'm stuck with 4-6 week backlog on reports, so got all hyped up to see MO for hee haw nothing. Angry about that... the CT department could easily have told me.
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Candy, you are a valued member of this community. Everyone here is!
You have no need to tell anyone. You yourself said you were thinking of it like a retirement. Tell them you chose early retirement.
OTOH if you havent been missing work now due to illness or disability I doubt you'd get it. TIA's are bad. Cancer is bad. But how are you functioning. Maybe with the compassionate care program that doesnt matter. You can always try.
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Gailmary--- Thanks for the compliment. I appreciate it.
Sorry but I didn't understand your last paragraph. OTOH ??? I think I understand what you were saying.... If I am not missing work now will I qualify for disability, right??? I thought the Compassionate Care Program would accept the MBC diagnosis as evidenced. And it wouldn't matter if I am missing work or powering through. I have MBC and it can be proved, and the program is for the MBC patients. Right???
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Candy, call someone from the SSDI, they talked well with me, or talk to someone in your drs office. In my case, it was the documentation by the onc that got my disability. You do not have to document you missed work. They ask specific questions like how long can you walk, sit, can you bend over, etc. The onc office usually can tell you if you will qualify before you go through all the motions. The MBC dx itself is not what works although it is needed, but what your actual physical disabilities are. Does your insurance have some kind of cancer consultant who is available to talk to you through this? I saw mine once at the beginning, but not since. But I know she is around if I need her.
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Thanks all for the info on FB groups. I too find this site to be the best! I guess I’m not missing anything over on FB.
Jensgotthis- I agree completely about getting a second opinion BEFORE progression. My MO told me in February when I asked what my next course would be (I was told different drugs could be approved then, we would have to biopsy cancer again etc) it was a loose recommendation but he said drop AI add fulvestrant and keep Ibrance.
I told the second opinion dr that and she said it wasn’t proven. Nothing in second line is proven after progression on cdk4/6.
I wonder if I should go somewhere else for a second opinion. I think you’re right-it’s good to be an established patient at Hopkins so that’s a win. Also, the fellow was amazing and said to email him day or night.
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OK, speaking of research nobody here is interested in or cares about, here is a OncLive clip from last Dec about what to do after progression on I-F. In it, they discuss putting patients on AA or Faslodex combo, unless they have liver mets, in which case they prefer Xeloda because those apparently don't usually respond to AA.Interesting part is where Joyce says that if patients do respond for at least 6 mos AA, she then will move them to tamoxifen of all things, because she has found that following that particular sequence of events can re-sensitize the cancer to estrogen inhibitors.
https://www.onclive.com/peer-exchange/unmet-needs-...
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Thank you Cure-ious! We are interested in the research LOL! Please keep it coming
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Wow. Interesting info. Especially the article staying AA not being that great on liver mets. I would rather hold off Afinitor anyway until I was sure I had the mutation to respond to this mTOR inhibitor. Isn't it a shot in the dark now when prescribing AA? Not like PIC3CA and Apelisib where we can prove the mutation.
I am greatly interested in the research topics discussed on BCO forums for MBC. I read the links, take notes and research myself, too. I seem to cut/paste to my email a lot! Brilliant folks contributing, researching and sharing info..so thanks to all of you..that includes you, Cureious. I know you were being funny.. Right?
P.S. My MO did say Faslodex/Ibrance next. I never had Foundation 1. My MO felt to save genomic testing for future bx when more mutations have been discovered.
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Dear knowleable ladies, I have read a lot about FGF and FGFR mutations. As I understood the Fgfr- so the amplification of the receptor is the sign of the resistance to Ibrance. I have couple fgf amplified-equivocal but not FGFR. And I should start Ibrance soon after small progression in one vertebra after two year on exemestan. I will have cyberknife on vertebra as well.I have already had two shots of faslodex. Two years ago I became stage IV with two mets. One in liver-was resected and one in vertebra. They were not sure if it is met untill this year when it lit on PetCt after two years quiescence. Liver is ok, since the resection Does anyone know if also fgf means possible resistance? Thank you and lot of health to all of you.
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And please what does exactly means in english-“equivocal". I have this written in Foundation one report with more genes. May be yes or may be no?
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