Ibrance (Palbociclib)

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  • tanya_djamila
    tanya_djamila Member Posts: 1,540
    edited March 2018

    LA94, into the night and cloud nine excellent news. So happy for you all.

    I started in June 2016 with stage IV. I had stage III 13 years prior and did all the chemo, radiation, and hormone arimidex therapy. Now its zometa, ibrance, faslodex. The recurrence was mets to hip, spine, ovaries, uterus, abdominal cavity, and rib. I had radiation to my hip and spine. Spinal surgery-April and hysterectomy-June. My last PET was Wednesday Feb. 21st. There's only one 3cm cancer lesion on my hip. It was 20cm in the beginning and reduced to 5cm in October. I just reduced Ibrance to 100mg in Feb. I was constantly fatigued to immobility. I feel much more energy on 100. I hope all this information is helpful to someone.

    Take care all and hugs to anyone who needs one today.

    Tanya

  • GracieM2007
    GracieM2007 Member Posts: 1,255
    edited March 2018

    So today I started running a fever. I have a little bit of a runny nose but not bad and a little tiny sore throat. I’m on my third round, day five. My fever is 99.6. Do you think I should be concerned? Other than being totally wiped out, I don’t feel awful

  • intolight
    intolight Member Posts: 2,386
    edited March 2018

    Gracie, a rule of thumb I was told for me is if your fever goes above 100.4, go to the ER. If it is just a cold, handle it yourself unless it hangs on long. If you develop a cough, sinus pain, ear ache, etc., then go to your GP for antibiotic help. If you are in doubt, call your nurse for her opinion. It has worked well for me. I can get over a cold with over-the-counter medicine just fine.

  • airlinegal
    airlinegal Member Posts: 253
    edited March 2018
    GracieM I would call and let them know just in case. If it reaches 100 they will want you to do something for sure. I was reading another breast cancer blog....maybe someone already reads this blog also...not sure what category it is in...anyway Z made some great comments on this blog about cancer and diet. I did not realize that cancer loves carbs and will convert our cells into carbs if not enough there. Don't have the knowledge some of you have and honestly sometimes I just block it out. Not sure cells is the right terminology. When she (Z) was referring to the above and diet sometimes it is best just to eat what you like with moderation. I believe Z was quoting one of the dr's she saw while in Japan. Just thought I would share. I try to watch what I eat because of the cancer, but eating salads all the time, etc. gets old. I do eat chicken and Salmon and no red meat. But every once in awhile I crave that hamburger. I know I am rambling...sorry.
  • airlinegal
    airlinegal Member Posts: 253
    edited March 2018
    Great advice IntoLight...well said
  • intolight
    intolight Member Posts: 2,386
    edited March 2018

    Airlinegal, I like your comment about eating what you like in moderation which is what I do. I did not dramatically change my diet with my dx and I have good results, but I did cut down the sugar and amount of red meat, and improved my diet overall. I want to enjoy my life and not burden my family with changes since I am the main cook. I applaud all of you who are more disciplined than I with diet. As part of my healing I decided to avoid guilt.

  • Jaylea
    Jaylea Member Posts: 440
    edited March 2018

    Janky, totally expected that your counts nosedive in your first cycle. Hoping you rebound and your labs turnaround to start the next one.

    Gracie, are you feeling better? I had something similar in January, wicked sore throat and cold-like symptoms, but never spiked a fever over 99-something, so didn't go to the doctor and recovered after a few days.

    IntoLight, Airlinegal, I track similarly with my diet, avoid red meat (but enjoy an occasional burger), stick to fish, turkey and chicken for proteins, lots of vegetables, and beans wherever I can work them in for digestive issues. In that vein, I avoid cheese. Also, at the recommendation of folks here, I work in live-culture probiotics like yogurt as well.

    Happy weekend, all.

  • PatgMc
    PatgMc Member Posts: 1,312
    edited March 2018

    Hello, friends, I'm here to confess that I just ate a McDonald's Quarter Pounder, fries and a chocolate shake. I feel sure all the kale juice I drank last year is going to cover it, don't you think so?!

  • janky
    janky Member Posts: 478
    edited March 2018

    Me again - the Pharmacist from the Cancer Center called earlier as he had a few questions on when I was getting my blood work done etc. He went on to say that my levels ere 'critically' low :( and to make sure if I felt feverish or ill to get to Emergency!! Apart from fatigue and super dry skin, I feel okay...any ideas on how I can improve my neutrophil levels? my haemoglobin is low too. Stay well everyone and thank you for any suggestions - I sooo want to stay on the Ibrance with Femara combo. J

  • Liwi
    Liwi Member Posts: 249
    edited March 2018

    Janky - I had a similar experience in my first cycle with nurse telling me counts were extremely low when I took 125 mg for 21 days. The dosage was dropped to 100 mg and they still werea bit too low so next I was changed to an 18 day on 10 day off cycle. In the meantime I saw a nutritionist and she suggested taking Reshi mushroom supplements to help counts. The counts have been OK with those two changes.

  • faith-840
    faith-840 Member Posts: 926
    edited March 2018

    PatG, I'm sure the kale juice covers it! LOL!!

    Faith (in the future).

  • Grannax2
    Grannax2 Member Posts: 2,387
    edited March 2018

    PatG. I'm pretty sure I'm going to go to McDonald's today. I want what you're having. But, I've never eaten one bite of kale. 😮

  • tanya_djamila
    tanya_djamila Member Posts: 1,540
    edited March 2018

    I try to eat well. I definitely try to avoid sugar, but occasionally give in to a craving, usually chocolate. I make my own muffins and use almonds ground up until it's like flour, carrots, chia seeds, flax seed, beets, pecans, eggs, olive oil. I try to eat one of these in the morning with green tea. I gave up coffee which I love. I love it with a sugary creamer.

    Kale juice stuff I don't do I just eat veggies. I will eat kale too but it's not my favorite unless it's mixed with something.

    I do drink a lot of water.

    When I get a craving I will eat a cheeseburger too!

    I used to make a green drink with all type of healthy veggies. I even drank wheat grass juice. So like Pat G I think it'll cover me for a few junk food binges?

    Tanya

  • airlinegal
    airlinegal Member Posts: 253
    edited March 2018
    Tanya....can you share your muffin receipe...sounds so good
  • intolight
    intolight Member Posts: 2,386
    edited March 2018

    Tanya, you gave up coffee? Why? I have one cup every morning. Occasionally, I will have a cup when I am out but that is rare. I would be more concerned about the green tea. I thought I remembered something about not drinking green tea on Ibrance. Anyone else remember?

  • EV11
    EV11 Member Posts: 86
    edited March 2018

    Hello, all...

    This is in response to those of you who are having difficulty tolerating 3 weeks of Ibrance, whatever dose, and trying to figure out how to deal with that....My onc is a PI for a few of the abemaciclib (Verzenio) trials, and when I was having trouble tolerating both the 125 and 100 mg doses of Ibrance ( in summer 2015) we asked one of the research pharmacists about what would be the next best approach-- 75 mg daily, or 100 mg every 36 hours or every other day or....


    His response was that taking a dose that provided the longest on drug to off-drug ratio was the best. He also said that the early trials showed no statistically significant difference between any of the doses, and that knowing what he knows about call biology and the development of medication resistance he would suggest lowering a dose before he would suggest prolonging the time off medication on a higher dose.

    Armed with that recommendation I dropped to 75 mg, and have been able to tolerate it well enough that I complete a full 21 days every month and only wait 7 days before restarting. I've been on 75 mg for 33 cycles--and if you count the 3 aborted cycles in the beginning I've been on Ibrance for 36 cycles. So at least in my case the lowest dose hasn't been less effective, and the best point is that I DO NOT HAVE the nausea and tongue sores I had on the higher doses-- I do have minor fatigue, have had some hair thinning, and I definitely have AI-associated joint pain...but all of that is minor and doesn't impact my life at all most days. Some days the fatigue is more than minor, but I still work full time in a hospital (teaching nurses), travel internationally, garden, and am involved in my teenage daughter's school activities in a 'normal' way.

    If anyone is thinking about trying Ibrance every other day, you could consider taking it every 36 hours instead, staying closer to the half-life of 29 hours and keeping amore stable drug level over time....or you could try 5 days on and 2 or 3 days off continuously (there's a trial at Washington University looking at that approach)...just food for thought.


    Hope all can find a dose and regimen that is tolerable and effective!


  • candy-678
    candy-678 Member Posts: 4,173
    edited March 2018

    mica1-

    Thank you, thank you for your post !!!!!   Maybe there is hope !!!!   I am trying 75mg every other day right now with another lab test and office visit this Monday.  

    Anyone with any more thoughts on dosing other than daily ( especially data ) please post. 

  • Jaylea
    Jaylea Member Posts: 440
    edited March 2018

    LOL, Pat, don't we all have our favorite pleasures! Mine is wine, I enjoy it when SE's are subdued.

    Mica, 36 cycles, wow. Thanks for the info, I'm still on 125mg but mulling a lower dose. I have scans late March and will talk to MO about it then when we review results.

    Janky, I don't think there's much you can do about neutrophils, it's just timing. I had to take something like 16 days off after my first cycle. The fact that you feel well is a big plus. Exercise a bit if you can - it helps everything.


  • LaurenH
    LaurenH Member Posts: 382
    edited March 2018

    Hi everyone - thanks so much for sharing your experiences and I’m so pleased to see how many of you are doing well not this drug! I’m on day 8 of Ibrance and I have noticed that i feel pretty full/bloated after I eat. is this a side effect? I think i saw that others were told to eat small meals throughout the day - is that due to fullness/bloating caused by Ibrance? Thanks so much.

    Wishing everyone good health

  • JoynerL
    JoynerL Member Posts: 1,392
    edited March 2018

    Is anyone else getting odd ridges in their nails? I haven't put polish on my nails in years, but they were in good, basic condition when I started Ibrance/Faslodex 14 months ago. Also, any suggestions for addressing this? Any sort off oil, etc? Thanks!

    image

  • midwest_laura
    midwest_laura Member Posts: 114
    edited March 2018

    Hi, Lauren. I often feel bloated as well, mostly in the evenings after taking I/F with a big dinner. The big dinner seems to minimize the SE’s for me. The trade off is bloating all night long. It usually resolves by morning.

    Joyner: a few of my nails (fingers and toes) have also developed ridges. The creases in palms of my my hands and feet are dry, cracked, and peeling. These problems persist even during my off week. I take Biotin gummies daily and drink plenty of water. I think this helps a bit, but these skin issues are a high mountain to climb.

  • jensgotthis
    jensgotthis Member Posts: 673
    edited March 2018

    I have those same ridges in my nails. I do find that nail oil makes a big difference. I am generally overly dry lately. The skin on my hands, feet, and legs is the worst.

    I like this nail oil. A friend gave it to me and it's wonderful. And, it's lasting forever. Could probably pick up jojoba oil or coconut or olive oil, but I like the little roller (I roll it on in the morning before spending the day typing) https://www.frenchgirlorganics.com/products/cuticl...


  • tanya_djamila
    tanya_djamila Member Posts: 1,540
    edited March 2018

    Hi All

    Into the light this is what I read on Feb 1 2018. It was also on CNN

    (CNN)California coffee shops may soon be forced to warn customers about a possible cancer risk linked to their morning jolt of java.

    The state keeps a list of chemicals it considers possible causes of cancer, and one of them, acrylamide, is created when coffee beans are roasted.

    I will look into the green tea. I also try to make it be matcha.

    This is what I found:

    image alt="Image result for matcha green tea powder and cancer">EGCg, an antioxidant found only in green tea, is the catechin with the most renowned cancer–fighting properties. EGCg makes up 60% of the catechin content of matcha tea. Matcha tea contains 4 times the catechins of regular brewed green tea. ... Catechins in matcha tea help kill cancerous cells and stop their progression.

    The following is from block md.com

    We recently had several inquiries from people asking if matcha tea should be avoided during chemotherapy and thought it a good question to address on our blog.

    For those of you not familiar with matcha tea, it's a type of finely ground green tea powder. The leaves used for this tea are usually covered as they develop, in order to protect them from sunlight, and they are dried in the shade. They are traditionally stone-ground, and the tea is prepared by whisking it in a bowl with hot water. Chemical analyses have suggested that matcha contains more of the important compound epigallocatechin gallate, (EGCG) than other types of green tea. EGCG is a type of phytochemical referred to as a polyphenol.

    There are two main concerns about drinking green tea when a patient is receiving chemotherapy. The first is due to the antioxidant properties of green tea. There are some doctors that believe that anything that has antioxidant properties might interfere with the action of chemotherapy drugs. However, our research team reviewed clinical trials on antioxidants that were given along with chemotherapy, and found there was little reason to suspect any interference with the effects of chemotherapy. In addition, researchers have found that polyphenols, such as EGCG, tend to become pro-oxidants when they are put into cancer cells. They then cause apoptosis, or cancer cell suicide, which actually reinforces the action of chemotherapy drugs. Therefore, we don't believe that using green tea is problematic with most kinds of chemotherapy.

    The other potential concern has to do with how green tea might affect the absorption and breakdown of chemotherapy drugs. Some herbs, for example, St John's Wort, speed up the enzymes that break down chemotherapy drugs and other drugs, which then removes them from the body too quickly. As a result, blood levels of a drug might end up being too low. Green tea, in very high doses – doses that are usually only obtained through supplementation – can actually have the opposite activity. It could result in somewhat higher blood levels of most chemotherapy drugs, although we have never seen this effect in clinical practice with patients drinking (not taking supplements) green tea. However, green tea may pose a concern with some very specific chemotherapy drugs. One of these is Velcade, used in treating myeloma and lymphoma. It's possible that green tea may interfere with Velcade: the polyphenols in green tea may combine with the boron in the Velcade molecule and inhibit its absorption. It's not certain that this effect occurs; it's only been observed in the laboratory and may depend on the concentrations of the drug used. The other drug of concern is Sutent, used in treating renal cancer. A study from China found that green tea appears to combine with the Sutent molecule and prevent adequate absorption from the gastrointestinal tract. A case of a cancer patient being treated with Sutent who drank a lot of green tea was recounted: when he was drinking green tea, his cancer progressed. When he stopped it, his cancer regressed. This was investigated further using chemical and animal testing, and it appears to be a genuine concern.

    So, at this point we do not see any problem with using matcha tea in reasonable quantities – a couple of cups a day – while someone is taking most kinds of chemotherapy. However, if a patient is taking Velcade or Sutent, we do not recommend its use until further work has clarified the nature of the interactions involved.

    Tanya

  • intolight
    intolight Member Posts: 2,386
    edited March 2018

    Thanks Tanya. I will continue to look into it...

  • tanya_djamila
    tanya_djamila Member Posts: 1,540
    edited March 2018

    Jens and Joyner I have those same weird ridges in my nails. I just keep them cut but they are brittle. I also put argan oil on them.

    Tanya

  • PatgMc
    PatgMc Member Posts: 1,312
    edited March 2018

    Joyner, someone recommended this to me and I just got it from Amazon....Sally Hansen Miracle Nail Thickener. I've gone back and forth from thin, splitting nails to rock-hard nails that are hard to trim. It's all so weird. With the changing side effects you would think each bottle of Ibrance had something different in it.........Oh, no!!

  • amarantha
    amarantha Member Posts: 330
    edited March 2018

    Joyner, I can't seem to do anything for my nails, they have ridges of course, and are paper thin, and break and split as soon as they get beyond the nail bed. I've tried Sally Hanses's Miracle Nail Thickener, and products specifically for chemo nails, that are expensive and supposedly have some kind of fibre in them (who knows). I just have to keep them really really short. Let me know if you find a solution. But this is not the fault of Ibrance, my nails became catastrophic under Afinitor, and certainly subsequent treatments have done them no good. I have NOT tried oil, haven't the patience to put it on every day and get no results ... I hope you find a solution :D

  • sandibeach57
    sandibeach57 Member Posts: 1,387
    edited March 2018

    PatGMc, Amarantha: I also have very thin nails since starting Ibrance/Letrozole. Sometimes, I think they are just dissolving into my nail bed. Aghh. It would help my state of mind if I could just control something, like the minor SEs..

  • jaycee49
    jaycee49 Member Posts: 1,264
    edited March 2018

    Yup, thinning nails with ridges. But what do you do for the neuropathy in your feet? Is that the tumeric thing? I got some 300 mg Neurontin from my PCP in November. Finally took one last night at 8 PM. When I got up to pee at 2 AM, I was dizzy, weak, uncoordinated and a general mess. Amazing I didn't fall on my face. I'm eating and drinking like crazy to get it out of my system. Almost there. Tumeric? What form? How much? Where do you get it? Does it work on burning feet? I'm Googling but need some experienced help.

  • Grannax2
    Grannax2 Member Posts: 2,387
    edited March 2018

    I have some neuropathy in my hands and feet. Most I've had for years prior to IF from diabetes and a neck surgery that caused all sorts of weird sensations in my hands and shoulders. But, the new thing that's happened is trigger finger in my left ring finger. It Icauses pain and swelling in my hand and other fingers. Recently, it hurts enough to wake me up at night. It does cause me to drop things too. Anyone else have this? Is it a form of neuropathy? Is it a SE of IF?

    I had just thought I would ignore it. But that's becoming a little difficult.💞