Ibrance (Palbociclib)
Comments
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Hello all - I just returned from my 2 week vacation in Germany. I cruised down the Elbe river from Prague to Berlin. Then spent a few days with a friend of of mine in a small town called Erfurt. I loved it - it would be a perfect retirement place. I was off Ibrance from 10 days before the trip until today,almost a month. I just heard from my pharmacist and my blood work looks great and my tumor marker remains normal. I started cycle 48 of Ibrance today. I am also fortunate to be in DC today, to advocate for cancer research. I am here as cancer advocate for the AACI (American Association of Cancer Institutes) and AACR (American Association of Cancer Research). Very excited to advocate. It is time for a cure
Anything you would like me to share with the legislators I meet with?
Wishing everyone the best!
Kitty
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It always amazes me how articulately my fellow MBCers here can say what they feel to us but not to the people who deserve to hear it. Karen, is there someone at your work you could tell that heartfelt hurt to? I was close to tears. You should not have to accept that pain and "just let it go." If they were trying to protect you, they obviously failed miserably. At least I can say I understand. My work was very important to my identity for many years. I feel your pain.
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Karen, I'm so sorry you must deal with betrayal at work at the same time you have to deal with this disease. I remember when I was first diagnosed in '94 and felt concern that I would no longer wear my hat as the "smartest, hardest working of 'em all"! I look back and remember taking better care of the company than myself those months.
One especially "not fair" moment comes back to me....the V.P. I reported to had been through brain aneurysm surgery 6 months before I was diagnosed. She was out more than 3 months and I commuted from Memphis to Chicago every other week to do her job and mine too. When her V.P peers murmered against her and wanted me to undermine her so they could get rid of her, I protected her at my own peril. Would you expect that she would be there for me when I had surgery and big chemo? Nah! She pretended it wasn't happening and asked more of me. I remember having to fly to a meeting for her convenience when I was nauseous and my counts were bottoming out.
Sorry to get off on that story but, like you, I took almost no days off and even wrote a new company manual in my "spare" time! Looking back, would I have done things differently? I was angry but It kind of felt like a win, showing myself I could persevere. It didn't hurt that the company was bought out that year and she lost her job first. What seemed like the worst thing but turned out to be the best was that all our jobs in the new company went away a year later. I was able to start the Flying Colors Cancer Network and a million good things followed.
Karen, please know that I will pray only good things for you...that you can figure out a way to grieve these circumstances and let them go. (I could get real busy and pray bad things happen to those who do you wrong but that never seems to get me anywhere!) God bless you, friend.
Love from PatGMc
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hi reposting early post
question for the beehive!!
Has anyone experienced neuropathy from Ibrance and if so, what does it feel like?
The bottoms of my feet have started itching like crazy and kept me up quite a bit last night. I have been having this center of the foot/heel pain that feels stabbing. Started on the left foot and now the right foot too. It hurts when I walk but I do it anyway. The itching is new and making me bonkers!!
Edited to add: just had a massage and asked for bottoms of feet to be worked on which felt really good. They are less sore right now but still theres an itch...weird! Is this neuropathy
Please advise! Thank you!!
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IchangedMyName, you may have side effects from both the Ibrance and the Femara on your feet. The most discomfort I've had in all my years of treatment has been from Femara alone on the bottoms of my feet, especially the heels. It didn't hurt unless I stood on my feet. My oncologist thought I must have Plantar Fasciitis but it went completely away after about 6 weeks off the Femara. I have just a little heel discomfort now while on Arimidex but I take Tumeric which may or may not make the difference....Who really knows?!
Ibrance has caused weird itching off and on, concentrated on the tops of my feet and lower legs for more than a year. That has resolved for the most part except for a persistent spot on the top of my left foot which stays red.
I hope you get better!
Love from PatGMc
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Kitty, Thank you for your advocacy!! Please tell all legislators that we expect Medicare to fully cover CAR-T and immunotherapy and any and every other major cancer breakthrough that comes down the pike!! Fix the health care system, America is a wealthy nation and needs to start spending on all citizens, not just the wealthy, this affects everyone, plus with everything we have to worry about, how to pay for treatment should not be an issue.
Also if they could move along the clinical trials a lot faster! Maybe make them so that we can just go to our local MO and enter into any trial, would increase accrual and participation and get results sooner.
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Kitty, I second Cureious and also throw in advocating for MBC people to receive Medicare immediately upon being approved by SS, like several other diseases have already obtained. The two year waiting period is financially ruinous and terrible for health
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Kitty, I'm with these ladies! In a rich country like ours no one should have to be anxious over paying for health care. Any and all medicines need to be readily available regardless of income. Please tell the powers that be how people often go into bankruptcy paying for medicine.
Thank you!
PatGMc
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I second what Cure-ious et all have beautifully said
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Kitty- I am just now posting so I hope it is not too late. I don't know when you are scheduled to talk with the legislators. I agree with jensgotthis-- we need Medicare to start immediately with approval of Social Security Disability, not a 2 year wait. Also, health care reform in the US. Affordable health care not reliant on work status. Crazy that our group plans are connected to our workplace and when you leave the workforce the premiums skyrocket. Thanks for advocating for all of us.
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Kitty please ask them to formulate a thorough follow up for early stage survivors such as:
Not only mammograms for testing.
. Annual Pet or MRI’s. Look in places where BC Mets are found ie., bone, ovaries, tumor markers. Early detection the second time around can prevent extensive spreading.
Look for a cure harder.
Systematic disability and Medicare at diagnosis.
Congrats on good scans and tests. I had my PET last week and I’m stable 22 months.
Changed name my neuropathy is a numb feeling. I get the itching on the side edge of the top of my feet. It feels great when my feet are rubbed. It’s an adjustment when I first wake up or get up from long sitting. I take faslodex and ibrance. Also I had super duper bionic chemo in 2003 and it was worse then. Let me know if you find any tips for this.
Karen I’m really sorry that you were so hurt at your job. I had similar treatment after my diagnosis. Like pat I went above and beyond the call while working. The diagnosis was like a battle cry for the haters to come get my job and office supplies. While I loved my career I, like Pat, have enjoyed more freedom to travel and do things that I love since leaving. I admit it took me awhile to get over the hurt of that treatment. I finally did write a letter to the President of the company detailing my treatment. I hope you can leave soon, if not you’re probably going to have to strongly tell someone off.
Tanya
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Hello friends, I could use some wisdom from those of you who read the post from Miaomix yesterday about trying alternative treatments for stage IV cancer. It's not something I would try right now if ever but here's my dilemma. I have a casual and very sweet friend whose husband has esophageal cancer and things don't look good for him, maybe 3-6 months to live. Am I being intrusive by sharing this story or will I feel bad if I don't, and this really could be an answer for him? I'm so torn because they are such great people who have had lots of problems including her own breast cancer. Do we believe this story or is it a sham? Will I cause more hurt by sharing the link to the story?
Your thoughts and prayers for wisdom is gratefully sought. Thanks so much!
Love and prayers for all here.
Faith (in the future)
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Maybe I am being too cruel but I am wondering why we spend BILLIONS of dollars on medical care for illegal aliens and I have to spend 40% of my income on my medical insurance and medical care. Since I - along with you - have metastatic breast cancer - we will be spending that money til we die. I started working and paying taxes and paying into social security/medicare since the age of 17. I am 74 now. Do the math.
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Dear Faith...the treatment is NOT an alternative to conventional treatments, BUT in addition to it...Joe, didn't stop treatment at MD Anderson, however, he was the only one that survived the clinical trial he was doing. All those people had a very nasty form of lung cancer and only months to live. I will continue to follow my MO's directions because it's NOT a either or.
Is it a scam? I asked myself the same question....after doing extensive research it's clear that the guy is just a Good Samaritan. because there's no money involved, no side effects, the protocol couldn't be more precise, and there are mice trials currently going on all over the country that indicate only positive results.
I, unfortunately, don't have the luxury of waiting for Godot. I will conduct my own clinical trial on myself, and I'll share the results three months from now...that's the minimum amount of time it takes for the treatment to be effective, but logically I'll continue if I have to as it's the ONLY HOPE I have of waking out of this nightmare.
With so much at stake, of course everyone should chart their course and do what's best for them.
But let me tell you, since this saga started, four years ago, it will be the first time that I will look forward to my next pet scan, and if the results are what I expect, I will spend the rest of my days, like Joe's doing, to inform people of this simple CURE
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I am planning on trying the protocol too but not using the CBD oi
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I had my first scans yesterday since starting Ibrance/Femara. My lung Mets have shrank and my bones are sclerotic/healing. I’m so relieved.
Miaomix, I have a friend that is triple negative stage IV. We both went metastatic the same week. She’s not doing well and I feel helpless. I want to send her the heart worm blog too but I don’t want to overstep. So many people have offered me sheer quackery to cure my cancer it’sunbelievable. I don’t want her to feel like I’m doing that.
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Jaycee and PatgMc ( sorry but in my wee Scottish head you'll always be PatMcg).. ...thank you so much for your kind words. I did indeed have a very Poor Me evening.
However I also have a ( healthy) friend at work who is at the same level, age and experience as me. I talked to her today only to find she's experiencing exactly the same thing re colleagues sidelining her.... and she's very good at her job, very nice and knows just what is happening with me. We consoled each other! SO maybe it's not about the cancer, maybe it's just that the left hand doesn't know what the right is doing and people are just bloody inconsiderate of people’s situations.
BUT who wants to continue to work tirelessly for an organisation which is just SO disorganised .... not me anymore.....maybe I do have some control!And maybe I should not be quite the ‘flakey’ person I’ve just revealed!
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novagirl...I totally get your predicament....but just ask yourself how will you feel, if and when this treatment is adapted and your friend is not around to benefit from it....
Or... how would you feel, if it was your friend that had bumped onto this information, and decided to not share it with you to protect your feelings? would you feel upset? Betrayed perhaps? I would....
Ultimately, it's a personal choice. There's no right or wrong....I am personally sharing this information because I would feel shitty if I didn't, and I'm just extremely excited...but on the other hand, if no one else does it, itwouldn't bother me in the least. I gave up co-dependency a long time ago....
We are all grown ups here....maybe you should close your eyes and reverse the situation, see what comes up...Regardless of what you do, I wish you and your friend the best of luck.....
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Miaomix that was perfect. I sent it. I waste so much worrying about people being mad at me. I would want the information to digest if roles were reversed. Thank you!
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novagirl...you're a wise woman! Please don't forget to post what happens to your friend. We need to compare notes and figure out if it works across the spectrum of MBCs and corresponding treatments.
Tell her to read the blog twice....there's so much I missed the first time. Also the vitamin E is essential. The mice that were treated without it didn't fare well. It has to be the specified type. The stuff that they sell at Costco or at local supermarket and pharmacies is allcrap.
Oh my goodness....I'm starting to feel like my old self again...
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meadows and novagirl, please share your experiences with us after the results of the first or second pet scan on the thread called
Topic: Ringworm drug for dogs (Fenbendazole) might also cure cancer
It takes minimum 3 months to destroy all the various generations of worms in their egg and larva states...
Please follow the protocol as described...I will also not be using the CBD oil initially, but will add it if I have to.
Pivotal are the vitamin e and the Fenben...
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I will. I was unsure if the curcumin was necessary but I ordered it anyway
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you did the right thing...I’m taking the curcumin also...
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Miaomix....I could not get the article to show for me....what are they doing....is there another web site to go to read...thx0
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I just passed my five year cancerversary. (two years stage II and three years stage IV) I'm tired. Really, really tired. Mentally tired of dealing with it. I'm tired of seeing all these options that I need to research and study. I know. That seems strange but it is anyone else just tired of it all? I went to my MO today and tried to mention and explain the dog medicine that someone blogged about. I thought it was a great idea and googled the hell out of it. I just got shrugs and "where is the trial?" (that from my favorite nurse). Then this afternoon, I see this:
https://www.medicalnewstoday.com/articles/325062.php
Yeah, another idea, another option. (But I thought you'd all want to see it. Very positive.) I'm just tired of all of it.
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Just glancing at a few posts..Noticed medicare discussion..As I mentioned besides Stage 4 Mets I was diagnosed (2018 )same time with Triple negative cancer of my "left over breast."☺3 sentinel nodes removed as with first one in 2008..But month and half later developed lymphedema from the latter mastectomy..Learned lots about sleeves and gauntlets..and guess what? Medicare doesn't cover them.
ONE quick ? to those that travel by air..Do they question your ibrance bottle ? Do you label it as a chemo drug..or carry it in yellow bag??oops that was two questions..Peace and love to you all.
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Airlinegal, check out the thread called ringworms for dogs. You'll find a lot of information posted there.
But most important is to read carefully the blog by Joe, the cancer survivor. It's full of details and specifications. I have posted links to the results of the various mice trials going on at various institutions.
If you decide to try, please share the results of your experience after at least three months of doing the protocol.
Good luck!
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Lakewoman, I travel by air a few times a year, and no one ever questioned my Ibrance bottle. I no longer receive it from the specialty pharmacy in a yellow bag, so I don't travel with it. I have a little plastic box with Immodium, Advil, our prescriptions, and antibiotics, and I keep it in my checked baggage. Never had an issue.
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thank you for responses about neuropathy. I’ll try and find more info!
Tanya - yes the foot massage felt AMAZING. I wish someone would did this every day for me!! Pat - thank you so much for responding! I am hoping this is a passing itchy foot phase
Lakewoman - I travel with all my meds all the time. I have flown both domestically and internationally with zero issues. I take Ibrance and Valium and all types of goodies with me just in case! Just remember to pack the meds in your carry-on, and don’t check them with your baggage in case your luggage gets lost or stolen.
Hugs to all!
Philly
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Miaomax, I will keep you posted on my friend and post her results on the other thread:-)
Jaycee I’m sorry. I know it’s been a long 5 years with ups and downs. I know what you mean by being tired. With stage IV BC you really have to be in the driver’s seat with next lines of therapies, clinical trials ect. Things are rarely black and white.
Thank you for sharing the article about keeping cancer cells dormant rather than killing them. My first thought was, “What will cure-ious think about this?”
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