Fill Out Your Profile to share more about you. Learn more...

Ibrance (Palbociclib)

1756757759761762945

Comments

  • SerenitySTAT
    SerenitySTAT Member Posts: 3,534
    edited July 2020

    I read about FMD when it first came out years ago, but I prefer doing a regular fast. I'm sure there are more recent articles if you search for Longo and FMD.

    Here are posts by santabarbarian who followed FMD during her chemo, so she would be able to explain it better.

    https://community.breastcancer.org/posts/search?ut...


  • cure-ious
    cure-ious Member Posts: 2,854
    edited July 2020

    Yeah, I would never be so organized to diet anyway- when push comes to shove I will do some kind of fast that I can keep up, which for me would be some regular nighttime fast stretched as long as comfortable- of course supplements can also add on to that, like i3c to boost PTEN (tho some have reported liver enzyme levels respond to that)...thanks!

  • SerenitySTAT
    SerenitySTAT Member Posts: 3,534
    edited July 2020

    I'm the same with being unable to organise a diet plan. It helps that I fast with my husband. The kids eat as they like, but they also don't eat breakfast. When you want to extend your fast, I recommend paying attention to your electrolytes. I take magnesium and a kelp supplement.

  • simone60
    simone60 Member Posts: 952
    edited July 2020

    Serenitystat,

    How often do you fast? And do you any particular week of the cycle? I might try fmd, just not sure how often and timing.


  • SerenitySTAT
    SerenitySTAT Member Posts: 3,534
    edited July 2020

    Simone - During my off week I try to fast 36 hours at least once. When I switch to the tablet, I'll do it weekly. It's easier for me to do it more often. The rest of the time I fast at least 14 hours, but about once a week I'll go almost 24 hours. I used to wake up hungry, but I don't anymore.

  • simone60
    simone60 Member Posts: 952
    edited July 2020

    Thanks Serenitystat. I try to eat within a 8 hour window each day which has helped me maintain my weight I think I'll add 5 days of fmd monthly.

  • SerenitySTAT
    SerenitySTAT Member Posts: 3,534
    edited July 2020

    IF is really good for weight control.

    ThumbsUp

  • faith-840
    faith-840 Member Posts: 926
    edited July 2020

    PatMcG, so happy to see you here still dancing. You have been on my.mind so much lately, I was ready to send out the calvary to rescue you. I'm sorry you're having all those nasty side effects, I'm praying they get better. I love your new piece of artwork. I'm sure that art is a great distraction for you, and you are so generous with it. May God bless you with healing and your art with abundance.

    Love and prayers,

    Faith(in the future)

  • sondraf
    sondraf Member Posts: 1,665
    edited July 2020

    Serenity - so when you are on the capsules you essentially have it with your one meal and then fast until the next capsule to get the 24 hours?

    I've been able to fast in the past and usually feel pretty darn good when doing it. Most of the time I don't like to eat anyway before 11 and then we eat dinner usually around 630 or 7, and I am no longer an evening grazer/dessert person. I did switch my pill taking to lunchish time so am more or less doing a 9 hour eating window, but I bet one day a week I could go 24 hours. Other Half isn't a big eater anyway. My 70+ yr old parents essentially fast as they only eat twice a day now - lunch and cocktail hour/light dinner. Mom looks fantastic too!

    Ive found that when doing the Whole 30 in the past it was much easier to get into that fasting mindset because I was eating the right foods and right fats with far less carbs.

  • GinnyO2
    GinnyO2 Member Posts: 115
    edited July 2020

    Thanks to everyone ! Great info on fasting !!!

  • SerenitySTAT
    SerenitySTAT Member Posts: 3,534
    edited July 2020

    Sondra - Yes, I keep Ibrance on the table so I remember to take it after dinner. Unless I had a big dinner the previous night, I'll eat a small meal around lunchtime to make sure I get enough calories. There are some foods that I like to have that no one else eats like prunes and sardines. I've recently started eating a tablespoon of unsulphured blackstrap molasses (hoping it helps with blood counts). My kids make really good desserts every so often. That's when the long fast helps me from ballooning. The Whole 30 is a nice stepping stone to fasting. Sometimes we'll do a Whole 7 when we've had too much bread.

  • cure-ious
    cure-ious Member Posts: 2,854
    edited July 2020

    Here is an earlier Longo/USC paper showing fasting helps chemo for breast cancer-

    their protocol seems to use fasting: water only for 48h per week, or FMD for 48-96hr per week

    FMD is a plant-based diet, low in sugar and protein but high in fat

    https://www.nature.com/articles/s41467-020-16138-3


  • BlueGirlRedState
    BlueGirlRedState Member Posts: 900
    edited July 2020

    Intermittant Fasting seems to be gaining popularity. Now with tablets which do not require food instead of capsules which did require food, and option for Ibrance users (unless some other Rx requires it). There seem to be many strategies. I've read about several on https://www.myfitnesspal.com/ . There is a free 9-part series on cancer offered by the FoodRevolution starting August 4th, you need to sign up. Free, but usually they try to sell you something. Maybe they will address intermittant fasting. https://www.TheAnswerToCancer.com

  • RhosgobelRabbit
    RhosgobelRabbit Member Posts: 502
    edited July 2020

    Hello ladies! Getting medical records now is an extra pain in the butt, I was able to get my CT report right after my bone scan because I had had that 2 days prior but then I needed to wait for the bone scan report to be done, had the scan on a friday so requested it monday to account for any delays since it was done on a friday. So I had my CT results but sat on them until I had the full picture. I just received my bone scan report this afternoon in the mail. Stable mable! Woo hoo. Loaded but stable. So I let out a big sigh and had a good cry. Good news in time for vow renewal on the 2nd. I also let out a relieved sigh because I finally was able to get my Ambien refilled. I sleep horrible without it, I've been waiting a week for it to fill. So tonight i will maybe sleep a little sounder, at least for right now :) Soooooooo, i guess the muffin cutting stories are here to stay a bit longer :P

    Jackie, thinking of you and scans. Hoping for stable mable for you too! :)

    Denny, hoping your next treatment is kind to you :)

    Aprilgirl- hope your doing well!

    BevJen, my markers are doing the exact same thing as yours. Lock step same. Mine went up up up then leveled out and are now hovering within 5-10 pts up or down.

    BlueGirl - I think what you said a bit back in the thread is true. I think the combination of everything that's going on has an impact on all that's going on in terms of how things go medically speaking for us. I haven't had nearly as much trouble filling a prescription as I do now. People are just different now too, on edge. A small taste of what we all have been going through before all this.

    Candy, hoping for a refreshed MO on the 12th. Have you decided to make the switch or kinda utilize both? Back and forth for me about switching. I don't like change for the most part. LOL, a terminal cancer patient doesn't like change. Ha!

    I'm on my week off now, so enjoying some freedom, tho I know an impending storm of a gaseous nature is on the horizon for me very soon :)

    I do want to agree with the varying difficulty pushing the tablets through. Also the unpleasant aftertaste. Water is my drink of choice and I just cannot use water now to take it. I have to use juice or iced tea to hide the aftertaste. Even chasing it down with food afterwards doesn't help. The beverage i take it with has to have flavor to counter balance.

    Take care ladies :)

    Anyone else have scans I missed? I missed a lot while away, I skimmed briefly but will go back. I'm looking into to giving modified keto a try. AI/oophorectomy weight gain sucks.

  • dodgersgirl
    dodgersgirl Member Posts: 1,902
    edited July 2020

    RadagastRabbit— woot woot on stable!! And so the Ibrance dance continues.

    I just received my packet for next cycle. I am hoping these tablets will be easier to get out of those huge packets.

    Question- is Ibrance made in Ireland for everyone here? I just noticed that on the outside of the box with 3 Ibrance packets

  • RhosgobelRabbit
    RhosgobelRabbit Member Posts: 502
    edited July 2020

    Woot Woot!!

    Dodgersgirl - yeah, I noticed pack to pack a difference in how easy they came out. Some packs were harder than others. Yep, my Ibrance is made in Ireland too. I noticed that for my capsules as well when taking those.

    Edited to add: Penny, how are you doing/feeling?

  • BevJen
    BevJen Member Posts: 2,341
    edited July 2020

    Radagast aka Mable,

    So good to hear your news! That's terrific. We have to take joy in these victories, so congratulations

  • candy-678
    candy-678 Member Posts: 4,166
    edited July 2020

    Rabbit- Woohoo!!!!! I have a friend that has Bone mets--- I know 2 friends with MBC, this one bone only, and the other bone and liver. The bone-only lady has had for 7 or 8 years. Not on Ibrance. Just on an AI. But, anywho, she says "Stable Mable" when she gets her scans. Never heard that term before. So, good to hear you say it. Also, I do not like change either. And I am a control freak. So ironic that I would get a terminal illness.

    I have almost decided to move to the new MO. I have been researching the insurance issues- getting scans at a new facility, etc-- to make sure in-network. My insurance is really weird. I have not had "the conversation" with my current MO yet. I want to leave on good terms. I will probably have to go back to local in the future--- get too sick to make the long drive myself. I will post my decision as soon as I make it. You all are thinking " just decide, why don't you". Haha.

  • BevJen
    BevJen Member Posts: 2,341
    edited July 2020

    Candy,

    I think the decision to switch MOs is a very personal one, and it does take some thinking for most of us -- plus the cross check on insurance info as well which is VERY important. I switched MOs after going to the same one from 2003-2019, and had an extremely good reason for doing so, and I also had to think it through for a bit. For better or worse, we are joined at the hip with our MOs, and we need to feel comfortable both with their personalities and practice style and with their knowledge base and ability to talk to other docs who may have other info that's useful.

    Good luck in your decision making.


  • aprilgirl1
    aprilgirl1 Member Posts: 794
    edited July 2020

    RRabbit - stable mable, excellent news! Sending you all the best for your vow renewal on the 2nd - will you carry a sunflower bouquet from your garden?! I am doing great, thanks for asking. I feel pretty good on Ibrance. My WBC continue to tank at the end (.60 neutrophils) so I imagine I will get bumped down to 75 mg next cycle. I would like to ride Ibrance out for a long time so the low WBC count does concern me.

    Candy, I completely understand changing oncs is a huge decision and you really do need to take time to assess the pros and cons. I also would not want to upset my onc if I were to switch - I don't like to burn bridges, especially since I live literally on an island .

    Dodgers girl and all - I, too dislike the packaging of the tablets. I dislike how bulky it is and it is so darn hard to open each pill section. I haven't noticed an off taste but take it with lots of water and try to not let it touch my tongue!

    Our 30th anniversary is coming up but like most of us, our vacation plans have been canceled. We decided to go on a road trip instead. Because of my low neutriphil count I had to take another week off which has shifted our trip but it's ok - would rather be flexible and stay on Ibrance!

    Hope you are all having a great week.


  • snow-drop
    snow-drop Member Posts: 544
    edited July 2020

    Rabbit, excellent news stable mable! and wishing the best for your vow renewal, enjoy.

    I am going to have scans next week. My both TMs have gone up suddenly, cea 3 times 27-29 5 times. The MO is suspicious for another progression. I preferred to leave the scan appointment as it was (not rescheduled for earlier) to enjoy one week of “no news is a good news” moment. am I crazy?

    Wish everyone a nice weekend.

  • BlueGirlRedState
    BlueGirlRedState Member Posts: 900
    edited July 2020

    DodgersGirl - I never thought to look where the Ibrance was made, I probably should have. My box says "Made in Ireland", I presume the mean the drug, not the box. So many of our drugs and/or ingredients come from China or India, QAQC and supply are more and more of a concern. Maybe "brand name" is not enough of a guarantee anymore.

  • iwrite
    iwrite Member Posts: 746
    edited July 2020

    Great News Rabbit! Stable is what we want to hear

    Candi- Maybe you can keep your current MO as your local consulting Onc. I have my primary Onc in Chicago and a local Onc I see every six months. Someone recommended this so I’d have someone to call on for local emergencies. I can sometimes get follow up tests done locally to save myself a long drive.

    Would your current person be willing? It’s still revenue for that office. (Insurance seems okay with it for 4 years.)

    I told them I wanted a “specialist.”

    Got my first package of tablets...sounds like I either need to work out befoe opening orfind a sharp object.

  • BevJen
    BevJen Member Posts: 2,341
    edited July 2020

    Re Ibrance being made in Ireland -- Pfizer has a plant in Ireland, so that explains it.

  • Rosie24
    Rosie24 Member Posts: 1,026
    edited July 2020

    Rabbit/Mabel, Great news! Congrats!!

    April, I’ve had ANC at .60s two times recently so getting close to dose change too. MO has not worried about needing an extra week off before but now that I’ve been at this a year and a half she thinks step down may be due. I used to be in the .80s or even .90s when low but now getting worse. She mentioned possible toxicity so dropping the dose is fine with me. We’re going to do one more cycle before deciding, partly because I have my next pack of 125 already waiting. I’d like to keep I/L going too.

    Julia, I get your waiting for the report and “no news is good news”. I don’t get TMs so I never have any hints of what to expect. But I’m more the type that just wants to know. We all do what works for us. Fingers crossed for good news for you!


  • karenfizedbo15
    karenfizedbo15 Member Posts: 719
    edited July 2020

    Great news Rabbit!

    Candy any more thoughts?

    Interested in the tablet / capsule thing.... not an options as yet for me in Scotland, so grateful for your thoughts everyone!

  • tanya_djamila
    tanya_djamila Member Posts: 1,528
    edited July 2020

    Candy I’m glad you’re closer to a decision.

    Rabbit congratulations 🎉🎈🍾🎊

    Rash all over from last 3 months. Onc said to take claritAn and if that doesn’t work maybe a steroid. This is rash on stomach legs arms. This is cycle 40. Anyone experience this? I had only slight rash during first year.

    Thanks

    Tany

  • sunshine99
    sunshine99 Member Posts: 2,723
    edited July 2020

    Tanya, I'm getting some scaly itchy patches on my legs. I'll see if it gets better. I'll try the Claritin if it gets worse (or give my MO a call). It's not super bad, just kind of annoying. I'm on cycle 2 of 125 mg.

    My ANC was 1.62 when I started, then dropped to .8 and then .74, My MO had me hold a week and it came up to 1.06 so she had me start up again.

  • SerenitySTAT
    SerenitySTAT Member Posts: 3,534
    edited July 2020

    Rashes! - I've been having rashes off and on. I take Aerius (desloratadine is supposed to be more anti-cancer than other antihistamines). When it's really itchy I take Benadryl at night. I also use heavy cream for my dry skin.

    I had my blood test yesterday during my 8th cycle of Ibrance (day 12). MO was OK with my low blood counts, so no change in Ibrance dosage. My rash that had spread is healing. My TMs are stable (small increase in 15-3, drop in CEA). He is scheduling a CT scan, but doesn't expect to find anything.

    With the pandemic, my hospital visits are much shorter. I don't wait for all my blood tests to be complete, and I don't wait to schedule my next appointment. My TM numbers were ready when I arrived home. The hospital will schedule my next appointment and CT scan and notify me by mail. My schedule is wide open.

  • tina2
    tina2 Member Posts: 758
    edited July 2020

    Yes, I had noticed Ibrance is made in Ireland. Considering its cost, the tablets/capsules should leap out of their packaging and perform selections from "Riverdance" complete with full orchestra.

    Tina