Ibrance (Palbociclib)
Comments
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At the risk of sounding like I worry too much, I have to say I was concerned with how warm the bottle of Ibrance was when it was delivered to me. The Pfizer instructions say "Store at 20C to 25C (68F to 77F); excursions permitted between 15C to 30C (59F to 86F)." Well, despite the protective foam box and packet, the bottle was 82F after riding around in the delivery truck all day in spring. What would it be in summer? So I changed to having it delivered to a local pharmacy since they get their deliveries in the morning, and I go pick it up there. You would think they would be more careful. I mean, we're not talking cough medicine, here. The pharmacist from the specialty pharmacy said I was not the first person to raise this concern.
Agent RosesToeses, great spy work.
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I just got an updated list of side effects from the trial I am on. Not a surprise to those of us on this thread..nose sores are now listed as a frequent side effect ( updated from occasional).
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Rosestoeses, I'm just jumping in at the mention of the anti-inflammatory diet: in my opinion the best all around anti-inflammatory diet is The JJ Virgin diet. There is a book you can get on Amazon (ebook or in the mail). It has changed my life, just as far as aches, pains, and GI issues. You won't lose weight unless you cut calories, but the point is not to lose weight it is to stop the inflammatory process. Just my two cents! Jumping back out of your conversation now....
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Ohhh... Lenn, does your updated side effects list say anything about mouth sores? A couple people mentioned them in previous posts. I just realized that maybe I didn't simply bite my lip chewing--again, four weeks after the last time it happened; and that maybe my lip in another spot didn't just get so unusually dry that it cracked and bled. Two days ago my onc nurse asked if I'd had any mouth sores and I said no. I must be really slow, or in denial.
So what are we supposed to do for this?
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Shetland - yes .. Mouth sores were moved up as well. For the nose sores, my MO said AD ointment. She thought that nose sores/mouth sores, etc were a result of the low counts, but I have not officially heard from The trial nurse/ Mo about that.
I am careful with nasal care as I am not sure the respitory issues you have with this drug are from germs getting into these open sores or not or is it something you just get anyway. I have an open nose sore now and am fighting off a cold but I seem to be winning.
Finishing up cycle four and I have to say, this month I have had no issues with fatigue, etc so hopefully my body is adjusting to the drug.
Romansma, sorry to hear about your issues on this drug. Hope it works out for you with it
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Myra I agree with you regarding inflamation and sugar fueling cancer growth. My onc believes this strongly and has been talking about this for years. He prescribes Metformin, the diabetes drug, for most of his patients. I have been taking it for several years now as there have been numerous studies that show that, especially for women who are not diabetic, it has been shown to have anti-cancer properties. I have checked out the Metformin with the pharmacist at CVS Caremark and there is no indication that it can't be taken with Ibrance.
Interesting about the temperate of the Ibrance during shipping. Since I get the Ibrance from CVS Caremark I wonder if I can get it at pharmacy and if it would be shipped any differently. I'm concerned during the hot summer months if they can control the temperate during overnight shipping.
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Hello ladies,
First cycle done and of all the low counts my onc seems to be concerned with platlets which went from 150 before Ibrance to 96 at 2 wk checkup and now 37 during off week. Was told to stop the meds and see their hematologist for a complete workup. Grrrrr very frustrated!I don't know what this will mean for me and this drug
MYRA- seems you had low platlets and rebounded, did you ever refuce the dose or just waited to restart.
Carolyn- I saw you had similar issue. did your platlets rebound and allow you to continue?
Thanks eveyone for all your help! Told my Onc at Rush Univ in Chicago about this forum I found and she started taking notes on what information I have gathered from all of you!
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hi Irish4, I have been reduced for the Ibrance and I have started multiple supplements and diet to increase platelets which have helped tremendously! Today, 186 halfway thru. Now hoping on markers!
Good luck all. Myra
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oh Myra that's wonderful! I will ask about those supplements on Monday! Wishing you great markers!!! Thank you
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Hello everyone,
I've been continuing to read through all your helpful comments and am so thankful for this board. I am finally starting the Ibrance on Monday after a 3 week delay due to a complicated UTI (bacteria was not sensitive to first antibiotic). My Onc didn't want to start me until it was cleared up. Anyway, I was wondering what time of day you find best to take the Ibrance since it's supposed to be taken the same time every day and whether the time you take it lessens or worsens any immediate SE like nausea, tiredness, etc.
Although I don't have any words of wisdom to share with those experiencing rough bumps right now, I just want you to know that I offer my prayers, support and understanding. We are all in this unfortunate nightmare together, and no one knows better than us what we are each going through and there is great comfort in that. I wish us all well and pain free days.
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jjski62 I have found that taking it with dinner is best for me. I was taking it in the morning initially and felt slight nausea and headache. Taking it night has worked best for me, but I think we're all different. Also, now that I'm finished with the third cycle, the headache and nausea seem to be much less. But really, even taking in the morning, the side effects were not bad at all.
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I am also being treated at Rush and have started my second week on these drugs. On Thursday I will get my first lab work. I think diet can be a factor and requested a nutritionist to review my foods. We do not eat meat, fried foods, and heavily use fish for dinner. I meet with her on Tuesday and have written a general outline on our foods, including restaurants. I have specific questions about the low WBC I see in this forum and what can help boost these counts (foods and/or supplements).
I take these drugs after dinner and make sure I have a dense and caloric meal, not just salad and light food.
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Hi everyone,
I just returned from my oncologist and my first blood work after my first cycle. I finished Ibrance on Sunday, and hoped that by today white counts would have rebounded. Unfortunately,my ANC is 900, which my onc says is too low to start, and he wants me to come back next week for CBC.. If I can get up to 1200, that would be enough to start again next week. He didn't seem too concerned- told me this is par for the course. He also said that dropping the dosage to 100 is a perfectly acceptable option if it turns out that I'm not able to rebound week after week. They have not seen any difference in results between 125 and 100.
So I'll do what I can to eat well and look into supplements. I did buy a mushroom supplement- Coriolus PSP, which I thought I'd try this week to see if it helps. It's one that is suppose to be great for immune support. I don't want to add too much into the mix with what I'm already taking or I won't know what's working. Honestly, I would be fine with dropping to 100mgs if that's what it takes. My red counts were lower too, which explains my tiredness, as were my platelets. But the ANC was the deal-breaker.
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Sandilee, I am on 100 mg which seems to be fine. My WBC and RBS is lower. My ANC is almost down at this point, looks like I will be done again at day 18. My MO feels the same about the dosage, and found out today he was involved with the trial and fasolodex which worked, which just has not been published yet. Another piece of ammo in our arsenal.
Oddly, this TMs were opposite! The CEA went down and the CA 15 went up. This time my ALT, AST and lactose dehydranase all went down significantly. This is a true Ibrance roller coaster🎢🎢🎢🎢
Have a wonderful evening! Having a glass of wine since 5/6 counts were good! Myra.
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Question pearlady: does the reishi mushroom really help you sleep?
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Hi Pearlady. I wish I could give you a good reply but I am only just starting on Ibrance and Letrizol once my insurance clears it. I've been n Affinator and Exemestane for almost 18 months and my recent scan showed significant worsening in my lungs and bones. Can you please tell me how you're doing on this medication. I'm having a hard time with my insurance company approving this. Did you have any problems? Hope you are doing well.
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So interesting how the MOs are handling this differently. I've started every cycle with my ANC below 1000, usually 600-900. She has given me the option to delay, but I haven't.
I'm still in my week off will start 4th cycle next week. Trying to keep my thoughts positive and hope that it just needs time to work!
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Positive thoughts are key Romansma! I struggle with them at times but I'm working at it.
Has anybody heard of any trials that involve Ibrance and tamoxifen?
There is some concern that I still have too much estrogen circulating in my system despite an oomph. I know there is some medical community interest in a return to tamoxifen after trying AIs. Just wondering if a tamoxifen/Ibrance combo could work for my particular situation.
Not that I could evenget it. I have one of those insurance companies that would not approve the Ibrance without letrozole.
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yes there is a phase lll trial going on now. I am on tamoxifen onc is waiting for the data from this trial.
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my MO has mentioned tamoxifen to me since I did so well with it years ago. He said there is research that people in my group are seein g results with it better than Letrozole. Something else for the back of my head, if I remember it! Myra.
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Myra- How many cycles did you do before your onc took down your dosage? I wouldn't be surprised if eventually they start everyone on the 100mg dose.
Romansma- It is interesting how each doc has their way of doing things. Mine didn't give me the option, but as soon as he saw my blood work said, "You're not starting on Sunday." It does mean another trip in for blood next week, which is a bummer. I am feeling a lot less tired today, though, so I'm hoping that means my red counts at least are coming back a bit, as they were really low, too. I've also been eating really well today and will continue this week. I'll probably put on 5 pounds! Three full meals a day isn't my normal routine, but I'm trying to get a lot of nutrition through my diet so I don't have to rely on too many supplements.
Kaydeesmiles- Before I had this option of Ibrance, my onc had talked about possibly trying Tamoxifen after Faslodex. I'm hoping I still have it as an option at some point, and it would be great if it worked. Also, I don't think your insurance is unusual, as most won't pay for Ibrance without the approved combo. Maybe once the trial Carol mentioned is over and it's approved, it will be paid for.
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Carol, Myra and Sandilee thanks much for the info. I'm definitely going to discuss with onc.
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kaydeesmiles, Faslodex is another option to address your circulating estrogen concerns. I am on it for the same reason, in addition to an AI. Favorable early reporting results of Ibrance with Faslodex were released last month from the PALOMA trial. No FDA approval yet but it is coming. Some insurance companies are covering it with Faslodex already, according to my doctor - I am battling mine right now.
Interesting what several of you are saying about tamoxifen. I don't hear too much about tamoxifen in the metastatic setting but It is nice to know it is making a comeback of sorts. I did well on it for early stage too. Will have to keep it in mind for an option down the road.
Myra - What did you mean about people doing better on tamoxifen than Femara in your "group"?
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JFL, I was on faslodex/arimidex for about 6 months. Results were ok but not great. Just kind of treaded water. TM shot up when I began that combo, then kind of a slight jagged trend downward. It wasn't until I started the Ibrance that my back pain went from sharp to manageable.
I've only had one round though so I'm wondering if the TM drop and easing of pain was also a result of having some leftover faslodex in my system battling the circulating estrogen by breaking those receptors down.
I should learn a lot when the numbers come back from next week's appt.
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I feel like this thread moves so fast I can hardly keep up! I don't want to derail the current topics but I did want to say thanks for the replies and suggestions about my questions! (and I also worry about the temperature thing! We don't usually keep the AC as low as 77 when it's 90 degrees outside, so that's been worrying me--I may need to think about keeping Ibrance in the basement or something similar.)
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Good morning all! You must all be on the West Coast. Sandilee, I was dropped after the first course to 100 mg. I didn't even make it to the 14th day. I still am only making it to 18 days, but my onc is not concerned since 5/6 of my numbers are looking good. My onc gives me no option of starting again with low numbers either.
JFL, I meant that I finished the full 5 year course back in 1998, w/o recurrence til just last year. They are considering giving it again to women like myself again to see if they can mimic the results. As I mentioned earlier, my onc was involved in the fasolodex trial, it is finished, was a success, and just has not been published yet.
Kaydeesmile, when I had BC at first (age43), my estrogen refused to leave even after chemo. Tamoxifen seemed to keep it at bay, though bloodwork kept showing I was in forced menopause. Weird huh?
Well, Happy Sunday all, remember do at least 1 fun thing today, be grateful for at least one thing today, and do one kind thing today. Myra.
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JFL and keedeesmiles, curious about where the estrogen's coming from? I had thought that without ovaries it would only come from aromatase but obviously not!
(and Myra, you posted at the same time, I wanted to say I love the "1 fun thing, 1 thing to be grateful for" idea! I'm grateful I was able to set in my seedlings yesterday *and* not wake up this morning to find them eaten by pests, and my husband will be grilling lunch today which is always fun!)
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RosesToeses, circulating estrogen was coming from being premenopausal and pregnant at time of diagnosis. Not sure how long the circulating estrogen hangs around but it needed to be shut down when I began treatment, which AIs don't do. They only address production of new estrogen.
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Thanks, JFL, interesting!
I was premenopausal too, even after all the heavy chemo from stage III--sadly it doesn't seem to be that uncommon here on the stage iv boards, stupid cancer. I was on lupron and Faslodex for a year, though, and still on the lupron now with the letrozole and Ibrance, so hopefully that's that.
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Hi Romansma, We were on A/A at the same time but I couldn't tolerate it as well as it didn't seem to work for me. All my mets seem to be in my abdomen so far. The MO started me on Halaven and Faslodex in June. My TM's are normal and the CT showed NED in January. I'm a little worried however because TM's have been holding steady at mid normal until last test. They are now at high normal. I know Faslodex will not hold me forever, so have been looking to see what may come next. I wonder if Ibrance may be next.
You have been so strong facing this awful disease. I have really admired you.
Thank you to all the strong ladies who have contributed to this thread. It is very helpful. MaryAnne
PS If you have not been on a chemo for MBC, Halaven was pretty easy on me. I suffered just the usual fatigue and peripheral neuropathy.
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