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Ibrance (Palbociclib)

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Comments

  • ABeautifulSunset
    ABeautifulSunset Member Posts: 600
    edited August 2015

    monika, I'm so glad you switched to a more informative group and probably better facility. I take Pepcid AC for acid reflux and for me it works pretty good. Some of the initial side effects do subside. I'm not sure how much of them are from your injection. I'm not familiarwith that. Blood work looks good usually means your tumor markers are at least stable and not rising.

    For any of you following my scan day, my PET showed no change from the last one three months ago. MOs first choice was to switch me to Xeloda, (because of my rising tumor markers) but feels ok about me staying on the Ibrance for another month or so and watching it. so, I'm back in Ibranceland. I will no longer complain about its SEs, as it still seems better than the alternative

  • ShetlandPony
    ShetlandPony Member Posts: 3,063
    edited August 2015

    Ok, Stefanie.It's going to be kind of a long month, eh? Stable scan, now the TMs need to start moving down.

  • ABeautifulSunset
    ABeautifulSunset Member Posts: 600
    edited August 2015

    yes, Shetland. But I feel like the cloud of gloom and doom has lifted and I feel so much better.

    It's amazing what scanxiety can do to mess with your head.


  • ShetlandPony
    ShetlandPony Member Posts: 3,063
    edited August 2015

    I know it. I have a scan coming up soon.

  • RosesToeses
    RosesToeses Member Posts: 244
    edited August 2015

    Welcome to our newest newbies!

    And Stefanie, congratulations on the stable scans! Hopefully Ibrance will start working some good on those tumor markers this month, too.

    Kathy, hope the scans went well, saying prayers for good results for you!

    And, Monkia, so glad to hear you're seeing an oncologist who can give you the time you need. MBC has so many ups and downs and confusing things, I think it's really important to see someone who can help you figure things out and give you good context, which requires seeing you and talking with you!

    Also, thank you to several of you who shared about the different doses not seeming to change effectiveness. I'm trying to believe my blood issues are a sign that I might just metabolize more of the drug and hope it's knocking the cancer just as much as it is my neutrophils. I guess we'll know for sure when I get those scan results!


  • Lynnwood1960
    Lynnwood1960 Member Posts: 1,107
    edited August 2015

    Steph, congratulations on your stable scan! Stable is always good! I have an appointment today to go over my scan results with my onc. The stress associated with scans is unbelievable, it's literally our lives on the line.

  • Myra1211
    Myra1211 Member Posts: 532
    edited August 2015

    Steph, congrats. You and I are in the same place. PET scan showed stability and improvement but TMs are rising. MO trying to figure this out. Very frustrating. Is it working or not?

    Smart move Monika. Your care at the hospital was very poor. Can you tell me who you switched to? My son and DIL are having a baby anyday now and I amgoing to need a MO up there. I am sure we will be up there a lot.

    Good luck to all getting results and taking scans! Myra.

  • pearlady
    pearlady Member Posts: 390
    edited August 2015

    Stephanie great news on your scans.  So glad you're still in Ibranceland and hope your markers start to go down or at least stabilize.

    For someone who asked, I have also always worked full time ever since I've been Stage 1V.  For me, the side effects of Ibrance/Femara are more of an annoyance than really difficult.  I've had IV chemo for Stage 1V and this is much gentler and easier for me to tolerate.  The supplements i take have helped me keep up my energy and keep fairly good blood counts.  Still able to stay on the 125.  My hair is thinner, but that's a small price to pay. I'm thrilled to have hair.


     

  • jobur
    jobur Member Posts: 494
    edited August 2015

    Monika, I use OTC Zantac 150 for bad heartburn and it has worked well for me. I usually only have to take it for a few days. I also started taking generic Effexor last month. Mixed results with that. Still get flashes of course, but don't seem to be quite as bad, I'm sleeping a little better. I am only on the lowest dose, 37.5mg. Have you noticed any se's from the Effexor? It seems like it makes my legs ache when I'm lying down, but that is not on the list of se's. Congrats on switching your care to John Hopkins! Hope you get great info and results there.

    Stefajoy and Myra, Yea for stable!! Wonder what is up with the TMs? Sounds like they may not be very reliable indicators with this drug. My TMs have never varied much so I rely on scans to show what is going on.

    Lynwood, Hope you get good news today.

  • Lynnwood1960
    Lynnwood1960 Member Posts: 1,107
    edited August 2015

    Had my appointment today with my onc to go over my scans. No organ involvement, bone only. Some bone areas now show healing/ scarring where the cancer was. Tumor markers continue to go down with each cycle. 203,156,106,and now 80. My onc said she spent the weekend at a conference where they discussed Ibrance and they are seeing some really positive results. I will be staying on the 100mg

  • mimipickle
    mimipickle Member Posts: 160
    edited August 2015

    Monika, i always ask at the lab for a copy of my bloodwork. I have the one just before I started Ibrance and the one I did a couple of weeks ago after doing the first cycle. You can look up on the Internet what all the things mean or ask the really knowledgeable ladies here.

  • pearlady
    pearlady Member Posts: 390
    edited August 2015

    Lynnwood that is such good news.  Really happy for you.  Keep it going.

  • dlb823
    dlb823 Member Posts: 2,701
    edited August 2015

    YAY Lynwood! Can't think of a better report! So happy for you!!!

  • KKsMom
    KKsMom Member Posts: 6
    edited August 2015

    Happy Tuesday everyone! I love reading all of these posts. Such good info shared here - what works, what doesn't work, what's next, encouragement, etc. This site definitely helps me get through this. I have finished my 4th round of Ibrance/letrozole (still at 125 mg with 10 days off instead of 7 - seems standard for my sluggish neutrophils). SEs still present -  fatigue, minor hair thinning, mouth sores at end of week 2 (but they only stay around for a day or two now - guess my body is adjusting). The triple digit heat here in Texas isn't helping. It really zaps me quickly. I had a PET scan yesterday and I am hoping to have results Wednesday when I see my MO. I should also have TM results tomorrow. I haven't had the TMs checked since initial bloodwork at diagnosis(February), so it will be interesting to see where they stand. I have been off of my anxiety meds for a while, but decided to begin again last week due to scanxiety - ha. I get so mad at the time I waste worrying about test results. I know it's natural to run through all of the scenarios in our heads, but with no control over the results, why do I waste this time?? My worrying changes nothing! This scanxiety thing is very frustrating! My rant is over. Hopefully I will have results to report tomorrow. Hugs to all.

  • Myra1211
    Myra1211 Member Posts: 532
    edited August 2015

    Lynnwood I am so thrilled for you!!!! Keep it up......Myra

  • ABeautifulSunset
    ABeautifulSunset Member Posts: 600
    edited August 2015

    Lynwood that is SO wonderful. This drug looks like its definitely working for you . Yay!!!

    Myra, what cycle are you on? Same as me, starting fourth? My MO says a lot of ONCs don't even use tumor markers as an indicator, they just go off the scans. But his great experience tells him upward moving tumor markers (in someone whose markers actually fluctuate) means things are moving in the wrong direction, regardless of what the scan show. Mets dont always appear on scans (in the bone especially) until they are big enough to make a noticeable mark. In any case. He suspects that if the tumor markers keep going up for another three months, there might be something to look at on a scan. Still, he was okay with my request to stay on Ibrance and watch it. Its such a new drug. I really want to give it a chance. I mean really how much experience can he have with this particular drug? If my markers keep moving up, whether or not I go on Xeloda now or after a little more progression wont make a huge difference. It will do to the cancer whatever its going to do, no matter.

    I'm totally good with that and happy now.


  • Hummingbird4
    Hummingbird4 Member Posts: 220
    edited August 2015

    Lynnwood, Stephanie, and all who got good scan results recently - I am so excited for all of you! So nice to hear of such positive results with Ibrance. Congratulations!

    Just saw my onc and I will be staying on the 125 mg even though my counts have not rebounded at all on my week off. They are very low, but Neutrophils are still at the bottom of normal - so not going to reduce dose. I know it's very early for me, just finished first cycle, but I feel great - no side effects at all. I so hope this is working!

    KKsMom, and all who are still waiting for scan results - Good Luck! Hope to hear great news from you.

  • Myra1211
    Myra1211 Member Posts: 532
    edited August 2015

    Steph, almost done with my 4th cycle. TMs and bloodwork done today. Hemoglobin only bad results. Everything else good. Will see what TMs show. Keeping my fingers crossed for the start of a downward trend. My MO went over the scan with the Radiologist for half an hour and concurred with his opinion. Myra

  • ashleymbsmith
    ashleymbsmith Member Posts: 2
    edited August 2015

    Hello Everyone! I'm Ashley and I'm 28 years old. Diagnosed on July 20th with Stage IV mets to pleura. I was diagnosed with Stage II in 2011 at age 23. I have 3 small children- ages 2, 4, & 6. I've been reading this thread for some time but I've never posted. I'm currently on Ibrance/Femara and Zoladex. I'm on my 13th day of cycle one and have had minimal side effects!

  • duck1255
    duck1255 Member Posts: 15
    edited August 2015

    Its really good to hear Ibrance is effective at the lower dosage. I'm on the 75 now and my counts are finally staying within range. That is really the only side effect other than mild fatigue but I'm working full time so that's part of it plus I don't sleep a full night anymore

  • Lynnwood1960
    Lynnwood1960 Member Posts: 1,107
    edited August 2015

    Welcome Ashley! You will find LOTS of support and valuable information here. I am also tolerating Ibrance/Femara well, fatigue being my main complaint. Duck, I will be returning to work Oct 1st and am concerned about how tired I will be. I am a nurse and my job is very physical and I am on my feet all day. I do not have the option of part time work for financial reasons and the oh so important health insurances

  • ShetlandPony
    ShetlandPony Member Posts: 3,063
    edited August 2015

    Lynnwood, what a good report! Happy for you. (It is doubly encouraging to me since I also have ILC.) What conference did your onc attend where they discussed Ibrance?

    Myra, waiting and hoping for lower TMs for you.

    Welcome, Ashley. I'm glad your drug combo is treating you well. I think that your age will help minimize your Ibrance side effects. I have to say that it just seems especially sad and wrong that a young mom like you has this diagnosis.

  • hopeful34
    hopeful34 Member Posts: 522
    edited August 2015

    Welcome Ashley. I too have mets to my pleura after being Stage I four years ago. The Ibrance is very tolerable. Good luck to you.

    Steph- great news! Glad you get to continue your Ibrance.

    Thoughts and prayers for everyone waiting for scan results.

  • mdillard04
    mdillard04 Member Posts: 83
    edited August 2015

    Hi Ashley!! Welcome!! I too am on the same treatment plan that you are on and it hasn't been too terrible! Let me know how your menopausal symptoms go... That is the worst part for me!! Glad you decided to write!! These women have been and Godsend!

    Monika

  • mdillard04
    mdillard04 Member Posts: 83
    edited August 2015

    Myra... I will be seen at Johns Hopkins Hospital They have multiple locations throughout the Baltimore metro area. My new onc is also a psychiatrist...2 for 1 special!! Let me know if you need more info.

    Monika

  • babs6287
    babs6287 Member Posts: 1,619
    edited August 2015

    Lynwood-great report!!!!!

    Steph-so glad your scans were stable. Hopefully your TM will now start to go down like mine did!

    I have worked F/T throughout BC- during dose dense AC & T, 33 radiation treatments and now Femara/Ibrance (125 dosage). I find that my biggest complaint on this combo is fatigue. I get home from work and crash each day. I'm also experiencing joint pains, a runny nose, and thinning hair-all a small price to pay if this combo works for me. My TM went up for the first 3 months and have been going down the last 2 months. My 3 mo scan was iffy-nothing definitive. I'm getting my 6 month scans in September. I know the anxiety you all feel with the scans. So much rests on their results!

    To all those getting or waiting for scan results I am hoping and praying for good results!!

    Babs


  • 3Holly
    3Holly Member Posts: 201
    edited August 2015

    Hi everyone, I am thinking of you all as you go through the anxiety of scans, and hoping for great results. My doctors give very little credence to tumor markers and seem to rely on the scans. Lynnwood and Steph, great news! I just started my 6th cycle of 125 mg Ibrance/letrozole, then will scan again at end of month to confirm that I need to move on (but hoping for a miracle since TM's were dropping and since I'm feeling well despite the scans).

    Welcome to the thread, Ashley, and good luck with the Ibrance. The only real side effects I've had are the low blood counts (white blood cell count was 780 last week so I had to take a few days off) and tiredness, but they always seem to rebound in a few days, at least enough to go back on the ibrance. I hope you have a long run with this, and that you can get some help with your young kids when you need rest.

    Monika, my opinion is to stick with the Zantac 150 and watch your diet on Ibrance, and take Tums as needed. I have noticed that my reflex is much better since I stopped drinking tea (hard for me since I'm Irish and drank tea all the time). Also, it helps to avoid fried foods and eat smaller portions. I've had bad reflux ever since the radiation in 2008, so I have been on Prilosec ever since, but I recently switched to Zantac after hearing news reports of Prilosec linked to heart attacks. At first I heard that a trial at Dana Farber was prohibiting Prilosec while on Ibrance (you can do a search and see conversation on prilosec - it is different from Zantac since it releases for 24 hours), but my doctor said that ban is no longer in effect. However, I decided to stick with Zantac since it has been around longer and does not seem as controversial, and does not release for 24 hours which sounds like it could interfere with Ibrance. My doctor said to try to take my heartburn med as far away from the Ibrance as possible (11 hours away was suggested, and I think at least 4 hours away from all meds for Tums, but you should ask your onc to confirm as there are differing opinions). I also sleep with my head elevated (sitting up if it gets really bad). Hope you can get relief soon.

    Myra, that is exciting news about your son and DIL expecting soon, nothing like a new baby to lift your spirits!




  • Kaption
    Kaption Member Posts: 2,934
    edited August 2015
    Hi 3Holly. Can you explain why your onc says to take the Zantac and Ibrance as far apart as possible. I've been on Prilosec for a long time because I "used " to have Barrett's. (Long story)
    I take everything first thing in the morning. I've noticed many of you take the Ibrance in the evening. Is there a special reason?
    Thanks. I've learned so much from all of you. I'm my onc' first Ibrance patient! I'm finishing my third round this week.
  • Lynnwood1960
    Lynnwood1960 Member Posts: 1,107
    edited August 2015

    Kaption, welcome! I take my Ibrance at dinner because that is usually my biggest and most consistent meal. You are supposed to take it with food to prevent nausea. I have not had any nausea doing it this way so I will stick with it.

  • 3Holly
    3Holly Member Posts: 201
    edited August 2015

    Hi Kaption, I take the Ibrance at lunch and take the Zantac right before I sleep since that is when my reflex is worst. I believe the spacing has to do with antacids interfering with the absorption of the drug.