Ibrance (Palbociclib)

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Comments

  • piggy99
    piggy99 Member Posts: 183
    edited May 2020

    Just to beat that nearly dead horse a bit more, the PALLAS Ibrance trial was for a general stage 2 and 3 population and Pfizer didn’t think it would show a statistically significant difference in “invasive disease free survival” (essentially progression free survival). I’m actually reading between the lines that they wouldn’t be able to show a commercially significant difference over the number of years they are willing to invest in this trial. A lot of these patients will be cured by the surgery. Of those that don’t, many will go quite a while without a recurrence, Ibrance or no Ibrance. It’s a lot easier to get statistically significant results for an extra year of progression free survival when the baseline median is 12 months, like it is for stage 4, then it would be for early stage. It’s possible a difference would emerge 10 years down the line, but Ibrance is going to be reaching the end of its patent life by then.

    They do have another trial for “high risk” early stage - that has a somewhat higher chance of success since presumably more than half of those patients are expected to progress in 5 years or less.

  • Penny-78
    Penny-78 Member Posts: 271
    edited May 2020

    Piggy interesting take on it. Thanks!

    Now to again ask an age-old question that I’ve seen debated on this Board many times. Turmeric or no? What’s the consensus these days?


    I drank turmeric tea faithfully for my first two years on Ibrance. But I fell out of the habit last year. Now thatmy markers have shot up I’m wondering if I should give it another go?

    Thoughts my friends?

    Penny

  • spookiesmom
    spookiesmom Member Posts: 8,178
    edited May 2020

    My MO said ok, a visit with Dr google said it doesn’t play nice with blood thinners. Which I’m on. I’d check for interactions no matter what mo said.

  • aprilgirl1
    aprilgirl1 Member Posts: 800
    edited May 2020

    Re Tumeric - i was taking tumeric capsules for anti inflammatory purposes. My new onc (who happens to be of East Indian heritage) said a big NO to tumeric capsules. I didn't ask about Tea. She said eating curry is fine but tumeric capsules have estrogen properties and I am 95% er/pr. Massive Sigh. It's hard to keep up on all of this stuff.

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

    I sure would like to know what others here think about turmeric. Just read this online from Web MD.

    “Turmeric contains a chemical called curcumin, which might act like the hormone estrogen. In theory, turmeric might make hormone-sensitive conditions worse. However, some research shows that turmeric reduces the effects of estrogen in some hormone-sensitive cancer cells. Therefore, turmeric might have beneficial effects on hormone-sensitive conditions. Until more is known, use cautiously if you have a condition that might be made worse by exposure to hormones.“


    I take turmeric as I thought it would be helpful to my cancer and it seems to help my joint pains. It doesn’t seem to have caused any changes to my cancer. I’m still stable on Letrozole only after stopping Ibrance in August of 2017.

    Any thoughts anyone?

    Love and prayers for everyone here,

    Faith (in the future)


  • ShetlandPony
    ShetlandPony Member Posts: 3,063
    edited June 2020

    BevJen, I sent you a PM.

  • candy-678
    candy-678 Member Posts: 4,171
    edited June 2020

    Ok so one last update on Neupogen saga and then I am quiet about it-----

    I just got the call from my MO. She had 5 minutes between patients. I thanked her for taking the time to talk with me. She explained that with my ANC number of 800, when I usually run 900-1000, she was concerned. In the world of COVID and also just with the lowness of 800. She knows I run 900-1000 and have no infections, but 800..... She didn't want to hold the Ibrance because when a person is off the meds the cancer can take hold. So.... she wanted to continue the Ibrance PLUS give the Neupogen. Going forward, she will look at each month's labs. If they are 900-1000 and I have no infection symptoms, then we will continue as is. If they fall below 900, then we can choose to hold Ibrance and take the chance with the cancer, or continue Ibrance and give Neupogen--- my choice.

    I asked about the literature saying growth factor not recommended with CDK 4/6 inhibitors--- she voiced again about holding med and the chance the cancer can grow off the med.

    So the plan now is--- I have held Ibrance Saturday, Sunday, Monday, and tomorrow. Do repeat CBC tomorrow and see what the numbers are then.

    She was ok, but I could tell she was rushed and kind of like I was a bother to her schedule. That I should have just done what was ordered.

    I did thank her a couple of times and said "we" when talking---"We did not discuss the plan." My voice was calm and I was not aggressive.

  • jaycee49
    jaycee49 Member Posts: 1,264
    edited June 2020

    Good job, candy. I hope you didn't say, "I'm sorry" too many times. I was worried about that with your last post. I have one small problem with your MO's take. I'm almost positive that cancer can't "take hold" in one week. I've taken several months off during my time on Ibrance and no doctor seemed to be worried. One week? Nope. Taking an extra week off is Pfizer protocol, right? Or did I miss something.

  • tinkerbell107
    tinkerbell107 Member Posts: 293
    edited June 2020

    Just checking in and determining if other folk have seen unusual lab wok. I don't have an appointment with my MO for 2 weeks. So wanted to bring forth to the group. Finishing up my 9th cycle, 125 mg. SO this is what appeared on the portal this morning, METAS 2.0% , ABS METAS.08. both of these are considering high. Plus I have slight (anisocytosis, polychromasia, hypochromia) and macrocytosis (present) What in the word, from good labs last cycle to all of this. Anyone else have seen these labs on their report?

    Hope everyone is doing well. It's never a dull moment with MBC...

    Appreciate feedback/input.. thanks...

  • sondraf
    sondraf Member Posts: 1,685
    edited June 2020

    candy - you should have your MO talk to the ladies that take the two weeks off every month and are NED. But your MO does all cancers right? Perhaps she has it confused with others that WILL take a week and go to town. I mean heck, I didn't even start I/Lfor two months after I was diagnosed and no one seemed too fussed about that. I think you got yourself into a good agreement, though, for this month. How many times is she thinking of shooting you up with Neupogen in the future???

  • jaycee49
    jaycee49 Member Posts: 1,264
    edited June 2020

    Tinker, my blood work report is two (CBC and Comp Metab) long lists of tests they do showing my current value, a "flag," and the reference range. I look at the flagged values and then at the reference range. That is what is considered "normal." Acceptable? On my latest CBC, there are 7 flagged values (some high, some low) of the 20 or so values. What I look at is how close my value is to what they consider "normal." It is always very close. That acceptable range is fairly arbitrary. There is an acceptable range but it is not exact. These numbers are not discreet, they are continuous. For example, the most important value for us is ANC or neutrophils. My value this last time was 1.5 (wow) and the reference range is 1.56 - 6.13. This was flagged as low. MO was ok, of course, because it was above 1.0. That value is arbitrary, too. Why 1.0? Who decided that? I wouldn't get upset about a specific value unless it was way off and then ask MO what it means. They might even know.

  • candy-678
    candy-678 Member Posts: 4,171
    edited June 2020

    Ok, I was not going to respond anymore about all this because I was thinking I was hijacking the Thread with my saga, but here goes:

    Jaycee- Pfizer protocol is the norm protocol as I read it. Below 1.0 you hold Ibrance 1 week and retest and restart if > 1.0. We can all see that protocol. It is on the Ibrance website. But... My MO believes differently, I guess. What can you do.

    Sondra- Yes my MO treats all cancers-- lung, liver, brain, breast (all Stages), etc. Rural America. A MO is a MO. "How many times is she thinking of shooting me up with Neupogen", I don't know. Looking at my trends over the last 1 year, I have been below 900 just this once. Prior to this year, I have been below 900 3 times I think. What will my future ANC numbers be? Who knows. I hope I will stay 900 or greater and can continue the Ibrance without an issue. I can see she doesn't like to be questioned.

  • tinkerbell107
    tinkerbell107 Member Posts: 293
    edited June 2020

    thanks Jaycee. I appreciate your logic and explanation. I was somewhat overwhelmed for none of these lab tests ever popped up before. So something is happening with my RBC. In a few weeks I’ll have more labs So maybe it was a fluke or nothing too serious. When I see my MO in 2 weeks hopefully she’ll no more about all of this or maybe not.

  • cure-ious
    cure-ious Member Posts: 2,891
    edited June 2020

    Faith!! How wonderful to hear from you and its incredible how well things are going!! I remember when you first went off Ibrance. So, you are now 4.5 years on first-line therapy! will you go back on Ibrance, or wait until progression and then add it to faslodex or what is your thinking? Maybe we just need Ibrance at the beginnimg to set the cancer cells in a sleepy state and then just come back every so often to reset the state-or wait for signs of progression and add it back? at least this way you know you aren't going to develop resistance to CDK4,6 inhibitors!!


  • JACK5IE
    JACK5IE Member Posts: 654
    edited June 2020

    Faith...I don't use turmeric because it seems like no one can figure out if it's good or not. You might find these sites helpful except they both say something different for turmeric. Maybe because it may interfere with the drugs we're taking. When I see that, I err on the side of caution.

    https://foodforbreastcancer.com/

    https://www.mskcc.org/cancer-care/integrative-medicine/herbs/turmeric



  • Penny-78
    Penny-78 Member Posts: 271
    edited June 2020

    Faith, so nice to have you back and see you are doing so well!

    Jack5ie, the Memorial Sloane Kettering site is a good resource! It says do *not* take temueric if:

    image alt="">

    So I think we are ok?

    Candy, you rock!

    Hugs, Penny


    P.S. added: The image I posted deosn't seem to be rendering. So click on the link Jack5ie posted above.

  • blmike
    blmike Member Posts: 195
    edited June 2020

    Progression here: afraid my wife's scan was bad news. She has progression in her lung MBC after only 11 cycles on Ibrance/Letrozole. She has a telemedicine visit with her MO on Friday to definitize things, but indications are her MO wants to change her to Faslodex/Piqray. I'd appreciate any experience with those treatments.

    Ladies, I so appreciate how welcoming you've been to me (as "just" a husband). I really feel like I couldn't have gotten through the past year with my sanity intact without this thread and without your support. You've been so helpful and so supportive! I really hate to have to leave you all, but will probably check in occasionally just to see how folks are doing. Again, thanks so much and good luck to you all.

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

    So I know the topic of “how do we raise our ANC at the end of our Ibrance cycles" comes up every now and then. I always look for suggestions so I'm happy to see them when posted. I read a thread on an MBC FB page yesterday that had a couple new ideas: papaya (the actual fruit or capsules (available on Amazon they said), and one I will be trying soon, therapeutic massage in the low point of the cycle. I'm not sure if this is week 3 or the off week.

    The person who gave this massage tip said she's been on Ibrance for 5 years and has consistently had ANC of 2.0 -2.4 for the two years she's been getting the massages. She said that massage moves around the lymph in the body. Maybe she's one of us on this board? If she is, I appreciate the tip and plan to start incorporating massage at the end of my cycles. She did also add that she's a runner which helps her with side effects. (I'm past my running years but I'll keep walking.). Has anyone else heard of massage as a help with neutrophils counts?

  • ShetlandPony
    ShetlandPony Member Posts: 3,063
    edited June 2020

    Jaycee said above, “Taking an extra week off is Pfizer protocol, right? Or did I miss something.?” No, candy’s MO missed something but there is no way she is going to admit it. So she is sticking to her guns and saving face this cycle by doing a re-check and using fear tactics (the cancer could go crazy in a week!) to get candy to drop it. The reason she is “letting” candy choose in the future to hold the Ibrance or take neupogen is that she (the MO) now is aware of the proper protocol, but she can’t say so. If the re-check is low, candy may be told to go in for neupogen. But if candy has a transportation problem (wink wink) she may just have to hold the Ibrance a bit longer instead. I’m sorry, candy. I think you are right about the problem for patients in rural areas without a lot of choice. I do not think you are in danger of hijacking the thread. This is an Ibrance issue on the Ibrance thread, and may be helpful to others who read and do not necessarily post. It is good that you are an educated patient.

  • intolight
    intolight Member Posts: 2,377
    edited June 2020

    Mike, so sorry to hear of your wife's progression. You will be missed! We all love how you advocate for your wife. I will be leaving this site soon too, but hope to peek in occasionally as I feel I made so many virtual friends here. I see my oncologist Wednesday. We already discussed probably switching to Xeloda but will know for sure soon.

  • Penny-78
    Penny-78 Member Posts: 271
    edited June 2020

    Aw Mike I’m so very sorry to hear that news. You’ve been a wonderful presence on this board. Your wife must have the P13k mutation which predicts a solid response to that combo. Even by itself Falsodex can very effective in the second line. I know it’s terribly hard but do t lose hope — there are SO many new treatment in the pipeline. Please pop on here periodically to give us updates

    Hugs, Penn

  • Penny-78
    Penny-78 Member Posts: 271
    edited June 2020

    IntoLight we will count on your *frequent* visits hete

  • simone60
    simone60 Member Posts: 952
    edited June 2020

    Mike, I am so sorry to hear about your wife's progression. There is a Piqray thread. I've been following that thread and i think the worse se is the diarrhea. I hope the best for your wife on her next treatment. Please keep us updated.

  • simone60
    simone60 Member Posts: 952
    edited June 2020

    Rosie, I'm going to have to try the massage to help improve ANC. That sounds wonderful even if it doesn't help. I have been drinking papaya tea, it did help alittle. I didn't have to delay starting my cycle last time.

  • tanya_djamila
    tanya_djamila Member Posts: 1,540
    edited June 2020

    Simone80 thanks for sharing your experience with the dental issues. My Onc said from the symptoms it sounds like TMJ which I’ve had in the past. It has backed down a little.

    BL Mike I’ll missed your kind caring posts about your wife. Take care you two and I know On the other thread there were two women who did piqray and then changed again after just a few treatments.

    Tanya

  • ShetlandPony
    ShetlandPony Member Posts: 3,063
    edited June 2020

    Mike, I'm sorry you and your wife got this disappointing and scary scan result. And IntoLight also, needing to change treatment. The plans you mention both sound like good ones with treatments that have a really good chance of being effective for you!

  • GinnyO2
    GinnyO2 Member Posts: 115
    edited June 2020

    Mike, I’m so sorry to hear about your wife. Praying for you both! Please be sure to drop in and let us know how she is doing.

    Blessings on you both

  • PatgMc
    PatgMc Member Posts: 1,312
    edited June 2020

    Mike, I'm so sorry to hear of your wife's progression but don't give up on one day revisiting Ibrance. I was on another treatment plan for 3 months, had rough side effects and it didn't work for me anyway. My oncologist had me do the Guardian 360 test and it recommended that I begin Ibrance/Faslodex. (I had taken Ibrance/Arimidex for 3 years.) I haven't scanned yet but my discomfort has decreased so I feel encouraged.

    Cure-ious has always kept that hope alive for me - that one can take a break from Ibrance and fool the body into accepting its healing properties once again!

    Please know that I'll be praying for you and your wife as I do all those who have moved on to other treatment plans. I know something big is on the horizon!

    For all of you getting scans or making decisions this week, my prayers are on that too!

    Love from PatGMc

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

    BLMike, sorry to hear your wife’s lung activity and a switch from ibrance. Please do stay or come back to let us know how she’s doing. Wishing you both the best.

  • cure-ious
    cure-ious Member Posts: 2,891
    edited June 2020

    Mike, The report we were discussing above, which was analyzing data from the Ibrance trials, indicated that some cancers were resistant due to high levels of PD-1/PDL1. Those people are more likely to respond to immunotherapy. So please make sure your wife has those levels checked, and maybe she could include immunotherapy in the next regimen?