Ibrance (Palbociclib)
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Chicagoan this is day 15 of my first cycle of Ibrance. Had my blood drawn this morning. My WBC came in a whooping 1.2. Dr told me to stop taking the Ibrance for the rest of the cycle. I go see him next Wed, and will receive the Faslodex shots. He is lowering my Ibrance dosage to 100 instead of the 125 I'm now on. Hoping that helps. I am just beat and tired. I'm usually an active person, but this is kickin me.
Is all the dosages of the Ibrance effective? I'm hoping so. Really glad for the break a week earlier than I thought. Depending on the counts next week, I may have a two week break. I'm encouraged by all of you who have been on Ibrance for a long time. Gives me hope that I, too, can continue and endure.
crissy
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I got another clean PET scan report. That's 25 cycles taking Ibrance plus five months I was off of it for various reasons. 30 months at 75 mg. (or nothing) with no progression. My theory is that I am fooling the cancer by not giving it long enough to see the drug and find a way around it. Probably not a scientifically sound theory but it works for me.
I saw the doctor who is giving the presentation at my cancer support group this Sat. I said I was looking forward to his talk on CDK4 (no 6) inhibitors. He said that he had to change the topic because the group leader wanted something about the latest research saying many early stage people won't have to do chemo. It seems he and his colleagues are not happy with all the press that leads people to believe no one will have to do chemo. He said trials in general pick the most healthy patients to participate and the results are suspect for that reason. I said, like they cherry pick. He didn't know that expression but when I explained it to him he said, yes, exactly. I told him how disappointed I was because the group never does anything about stage IV. He said he would still cover some stage IV trials and I guess I'll have to be happy with that.
It's amazing how a good scan can make you just feel better.
Chrissy, why did he take you off for 1.2? Anything 1.0 or higher is ok for my MO. Is it because it is so early in your treatment? I really don't remember that long ago.
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Chrissy,
Many of the women here have had great results at the lower dosages-they will likely chime in. I believe that the research shows the lower dosages are equally effective. Hope you can recover now in this off time and that your blood counts will bounce back up. Best wishes.
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I am on cycle 12. My scans at the beginning of June showed no activity in bone and the one remaining liver tumour continuing to shrink. For six of the 12 cycles I have needed a dose reduction or an extra week off. I have thought about trying a 5 days on, 2 days off schedule but if Ibrance has a half life of 29 hours, I can’t see how 48 hour off helps much. I may suggest 3 weeks on always 2 weeks off. It’s so hard to plan ahead, when I never know if I will needs two weeks off and 2 blood draws. As it is I book multiple appt for blood draws and then cancel the extra ones. still I am grateful to be here and to feel so well I leave in half an hour to do two hours of paddling with my breast cancer dragon boat team.
Hobbes
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Hobbes, paddle on, sister! I switched to 75mg after taking 2 months off in the winter. I wanted to reduce my dose further and my oncologist and I settled on 3 weeks on/2 weeks off for the near future. Down the line, if this continues to work, I hope to stretch that out even further. A little experimentation is the only way we're really going to know the best course for us personally. I too hope this means I'll get even more time with Ibrance. I don't understand the science behind it as my brain was never inclined to such but I'm hoping I'll get enough time on Ibrance for "the next big thing" to show up! Why am I so hopeful? I have friends with a particularly deadly leukemia who took Gleevec in its early days. They took it constantly for years and years, afraid to alter the dose by taking time off. They've discovered that about half the people who took it are actually cured and can stop the drug! Who knows but what Ibrance will turn out to do that for some of us?
So, Jaycee, my science and your science are High Fiving each other! Congratulations on the good scan and thanks for being one of my 75mg mentors!
Chrissy, others have heard this from me already> My oncologist has never given anyone the 125mg dosage but starts people on 100mg and reduces to 75mg if quality of life demands it. I understand that reducing the dose does not change the efficacy (is that a word?!). My widespread bone mets indicate that they are healed according to my radiologist and my orthopedic oncologist. I have one tiny bit of FDG and I'm 21 months into Ibrance/Arimidex/XGeva! Don't be afraid to tell your doctor you want to change. They tend to follow what the trials called for. My onc is a bit of a rebel, older and a former researcher. My best to you!
Love from PatG
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I had bloodwork today and my monthly Xgeva shot. The nurse said my bloodwork was "pretty much perfect" and it has been so far. I'll start my fourth round of I/L on Friday. Scans in July. The only bad part was that I gained weight this month for the first time. It's frustrating since I've cut out all snacks and eaten less at meals since my appointment last month. I wanted to lose a pound or two. I walk when I can but I can't do a lot of exercise. Drat!! It's silly, but I'm very upset over this.
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MuddlingThrough, from my own experience and that of hundreds of friends who took AIs, weight gain is a given for most. I eat substantially less than I ever did and gain 1-2 pounds a month. I, too, am sure inactivity has plenty to do with it but, you're right, it is upsetting. I've decided I prefer this over taking toxic chemo and losing weight so, for me it falls into the "it is what it is" basket. My best to you!
PatG
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Muddling Through, I gained a pound a month the first year, the second year I concentrated on no weight gain and I can manage that. I tried to lost weight, but it didn't work. Like you, I walk a little but exercise is brutal. My DH doesn't want me to lose the weight as he wants the extra weight on me for when I need it and start to lose because I am sick (I am about 40 pounds overweight). We disagree on that, but I have learned to let it be and concentrate on celebrating the joy of living everyday.
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Janet, WHOOPEE for your excellent scan!!! You go, girl!
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PatG and IntoLight, thank you for sharing your experience. I've scolded myself for being worried when, after all, I'm still alive. However, I'm still weak and I have to haul this extra weight around which makes me more tired and so on. Clothes snug. Grrr. The only good thing in this whole s--- show was that I'd lost 20+ pounds and now it's sneaking back?! In spite of my precautions?! I'll adjust, I guess. I hope.
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Ladies: I just completed my 2nd cycle of Ibrance. Also get Faslodex injections every 4 weeks and Xgeva every three months. My eyes have started burning and watering in about the last two weeks. Don't know if that is SE of the Ibrance or not. Anyone else have this issue? Any suggestions? I have been using eye drops from time to time but that does not seem to be curing the problem.
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Wandering, I also get watery, burning eyes. Started around my 3rd cycle of Ibrance. Some days are much worse than others and I haven't found anything yet that works every time. Sometimes eye drops help or washing my face (shower) and sometimes it just seems to disappear for a week or two or three on it's own. Hopefully others will have some good ideas.
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Hi! Hope everyone is doing well. I started my 1st cycle of the Ibrance/Letrozole combo today. I’m glad I took the day off, had zero hours of sleep last night, just so nervous about starting the meds today. Fingers crossed for minimal side effects.
This morning during the “chemo overview” my oncologist went over side effects with me, watery eyes is listed as one of the Ibrance side effects.
Curious, how soon after the initial dose did you experience side effects (days, weeks)? Any advice?
I was also prescribed an anti nausea med that dissolves in my mouth if I start to experience nausea
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Yayy for those experiencing great/good scans - let's all keep the ball rolling!
Jaycee - always disappointing when Stage IV once again gets put on the 'back burner'. Hopefully you do get some good insights from presenters...
westiemom - I just finished cycle 4 of Ibrance, and I am one who has to wait 2 or 3 weeks before restarting due to low neutrophils (I changed a couple of things in my diet at the start of cycle 4 so anxious for blood work next week. SEs for me were added fatigue, dry eyes and periodic diarrhea or constipation, both settled with a dose of either imodium or restoralax. For some odd reason, usually 3rd or 4th day off of the cycle I have a bout of nausea which subsides after I stick my fingers down my throat and gag, we'll see what happens in the next few days
All the best on your journey!0 -
Westiemom, I'm betting that you're going to be FINE and that this medication will be a breeze for you. I have NEVER had nausea from Ibrance/Faslodex/Xgeva. Some surely have, but most, I think, have not. Look for the best!
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Westiemom and others new to Ibrance:
The Ibrance Dance is an interesting thing with a variety of side effects that come and go. In my 21 or so months of Ibrance/Arimidex/XGeva I've had several on the list....mouth sores (natural yogurt fixed that pretty quickly), skin rash (Cortisone 10 relieves that each time and I go months in between bouts of it), heartburn (resolved by Tums and/or Pepcid AC), with nausea being the most annoying. (I've found one-fourth of the smallest dose of Phenergen or the lowest dose of Zofran is adequate but I stubbornly don't want to take them regularly.) The interesting thing about the nausea is that letting myself go ahead and throw up cures it immediately. There seems to be some kind of brown phlegm (WTMI?!) that wants to come up and once it does, I'm good. The downside of the nausea is that I can't always predict when it will happen so I let it limit my activities. It rarely happens more than once every few days and never twice in a day. The other annoying thing I've had is some hearing loss. That has stopped now that I've reduced from 100mg to 75mg. The popping I sometimes had has also stopped. The winner in the side effects dance-off was always fatigue but that has improved on the 75mg!
When I look back on chemotherapy side effects in the past (FAC and Taxol/Carboplatin) I think I'll take my list and go with it. My blood counts have stayed just below normal or just inside the normal ranges and I'm super happy with that.
So, new folks, don't be afraid to take those capsules. They're mighty good medicine and, whatever your side effects, they are manageable and probably temporary. I'll pray for good things!
Love from PatG
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westiemom, sorry you have to join us, but ask away as we welcome all questions! As you can probably tell, side effects differ with each person. For me, I have occasional nausea but usually I can control it with crackers. I used to have a bout of diarrhea sometime during the first week of the cycle, but Imodium takes care of it. That has disappeared or is very rare now (I am in cycle 25). You get used to the fatigue and you will find exercise helps. Don't stop walking or whatever you do now for exercise as it really does help; especially when you don't feel like it. Some ladies can still hike! I am good to walk 1/2 mile at sea level on level ground, but I do it. But I don't like to wear myself out so I stop when I feel it. I have eye drops that help, and yogurt or Biotene mouthwash helps with the mouth sores. I don't get them often. My hair has thinned, but is workable. There are other things that come up and you can read back, or wait until something pops up. The people on this site are wonderful and most are more knowledgeable than I, but all are positive and supportive. Whatever you go through, make sure you give yourself time and space to find your own new normal.
Ade, I pray for your DH, and am glad to hear he is doing well this week.
Nancy, I live in a condo with a great pool and hot tub, but I am reluctant to swim in a public pool and some of the others allow their little kids in the hot tub almost daily, so I avoid it. But I am not afraid to spend good time in the ocean which is just about 1/2 mile away.
Happy summer!
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Jaycee I am SOOO happy for your scan results!
Wandering my eyes started occasionally burning and watering during my eight or ninth cycle. It was about a month after I was switched from Anastrzole to Letrozole so I suspected it was actually the L which was the cause of that and other SEs I developed around that time. Some on this board have said that Claritin helped them. Maybe give that a try
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Jaycee--congrats on continuing the great scans!
Weighing in on the dosage and counts. My ONC also says that ANC 1.0 and above is perfectly fine. Mine dipped briefly to .9, but then in 10 days was up to 1.7. Also, she never starts any of her patients on 125mg; she says that her patients usually cannot tolerate it. She starts everyone on 100mg and then monitors.
Wandering & NMJanet--I get watery/burny eyes. It's due to the Ibrance and it's dry eye. You should try drops that are for dry eye like Bausch & Lomb Sooth or Systane. They really help.
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Question for all you ladies: An oddity.... so my ANC blood count is lower at the end of my "off" week than it is in the middle of my 3 weeks "on". It seems odd that my white blood cells are higher while taking the Ibrance than they are after a week off. Anyone else experience this?
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NMJanet--I'm only about 15 minutes from you! Wow! Small world. You mentioned your cancer research center--do you go to UNM Cancer Center? I go to NM Cancer Center (NMCC). I've had a really good experience there.
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I've been off here for a while so I can't catch up with everyone but....
Welcome Westiemom. It's a great site even though you haven't chosen the need to be here.
Gracie....surrounding you with even more love, the same as everyone else.
MountainLady....thanks for the info on ANC count. I've been taking probiotics since the beginning of my last cycle and there was no difference in my ANC after a two week break - 1.11 again (sigh) but at least I get to start my 16th cycle. To answer your question about weird happenings with ANCs, sort of, mine is usually about 8.9 at the end of the first week's break. One would imagine it is on the way up at that stage but no, I've discovered it's still on the way down even though I start every cycle at only 1.10. It would seem my ANC is very slow to drop and that it reaches its lowest point only a few days before the end of the second week's break and then zooms (not really the right word, probably "staggers" describes it better) to 1.10 or 1.11 again.
I wish there was a Like button on this site so we can show our appreciation for a post as we scroll past. It's so hard to remember all the posts I want to reply to.
My tumour marker is on a very slight, gradual upward trajectory but it's still bouncing around, albeit at a higher level. While it's still bouncing downwards at times we will be in a wait and see situation but my pain has worsened so my MO increased my Fentanyl patch dose to 50mcg. Apparently, it can still be increased further if necessary. Unfortunately I have stress fractures in some ribs again and most likely in my spine but I'm not going to worry unless I have to. Compared with so many of you my situation is a good one.
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Mountainlady, my wife experiences the same phenomena, her counts often fall further during her week off. I thinks its due to the long half life of the drug, in that it persists for 4 or 5 days after you stop taking it, so the suppression continues to some degree for days after you stop taking it. As well, your blood cells have a life cycle of less than a day, and if they are not replaced, they continue to die off without replacement. They call it nadir, the low point, and it typically coincides with some days after you stop taking a suppressive drug.
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I also dealt with the watery eyes for many, many months; fortunately that issue has finally cleared up for good. Just finishing cycle 36 of Ibrance/Faslodex/Xgeva. Hope everyone has a great weekend!
MM
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Thanks for the replies regarding the eye issues. The burning and watery eyes started about a week ago when I had an eye exam. Coincidence? Anyway having cataract surgery next month so if it's not cleared up by then I will ask the eye surgeon about how to handle.
Off the subject: we had 5 telemarketing calls in the last 24 hours. One was at 12:24 AM and another at 12:55 AM. I have such a hard time falling asleep anyway - my heart was still pounding from the 12:24 call when the next one came in. I don't know what to do about these. Our phone numbers have been on the National Do Not Call list for years - another pathetic government program. Besides yesterday, we get telemarketing calls all the time. We do not have caller ID but I don't think it works for these guys anyway. Just venting. Thanks.
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Leapfrog--thanks for the ANC info. It seems that the counts can be all over the place.
Husband11--that does help explain a lot. Thank you for letting me know!
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my neutrophils are often higher on day 14 than on day 28. I am interested in the idea of three weeks on and two week off on a regular basis. I plan to discuss this with my onc on the next visit. We talked about a 5 and 2 days off schedule but if Ibrance has a half life of 29 hours, a 5/2 schedule could be worse as your neutrophils never get a week to recover. My issue is that I can not plan much ahead as I never know if my cycle will be four weeks or five. This summer I have had invited to a wedding, a retirement party, a bat mitzvah and a drigan boat renunion, all out of town but had to turn the new all down as I never know when my blood work will be needed.
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It is puzzling how the 5 on 2 off would improve neutrophils, but someone a lot more knowledgeable about the drug than I theorizes it will work. I know someone who is trying it, and after 30 days the neutrophils are not substantially higher than before. Tumor markers down slightly. Fatigue might be improved, but that is so variable its hard to draw a conclusion yet. We will see after 60 days how the various counts are. If there is going to be recovery of blood counts under that plan, it might take some time. A longer break from the drug, like 2 weeks, would certainly produce faster results. Whether its better in terms of treatment and outcome, who knows.
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Just checking in and sending my hellos to you all!
I have just started cycle 6. My blood count was at 0.8 two days before the start of the cycle. My MO suggested taking an extra week break, but I asked her to give me 2 days and check again. In those 2 days, I loaded up on vitamins, protein, ginger, garlic and exercised. I was also told to move around right before doing the blood work as the white blood cells tend to stick to the walls of the vessels. Miraculously, the white cell count went up to 1.4 the second time around. So, I was able to start the next cycle with minimum delay. However, in hindsight, having an extra week break would have been nice.
Now, next set of scans are coming up in a month. Wondering for those that get bone scan and pet scans, do you do them on the same day? I have done the scans one after another on the same day, however, now thinking it's horrible to have all the radioactive material and contrast dye in the body. Would it be better to do them on separate days?
For the ones who have recently joined us and worrying about side-effects. I must say to my surprise, I am feeling pretty good most of the time. The side effects are quite manageable and minimum. Even by drinking lots of fluids can take away many of the symptoms. I am getting pain in the heal of the foot especially getting up from a sitting position or getting out of bed in the morning. It does get better throughout the day and as I move around more. My hair thinned a little, finger nails are weaker, but I take those as my new normal. I still find the hardest of all this being the mental fear. Although I look the same and feel good most of the time, it's hard to shake off the thought that I am a stage IV cancer patient. It's difficult living with uncertainties, but then again there is nothing certain in life. On a happier note though, the diagnosis had brought me to enjoy life in a way that I've never experienced, like listening to the sound of the birds, watching the flowers blossom, learning to paint, trying new pieces on the piano....life is still good!
Sending hugs and good wishes from Toronto to all of you out there who are all praying for the same!
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Hi Ladies, a newbie to this forum. This site was a huge help to me when I was first diagnosed in Oct 2016. After a time from hell with an ONC who I didnt feel safe with, and who delayed chemo when I should have been on that path she started treating me as Stage 4. Switched MO and have been so happy with him. Have been on Anastrozole since Feb 2017. Was doing good tumor markers down, good scans, now markers have been on the rise. Have been on Falsodex almost a year with Anastrozole. The other day he says he is going to put me on Ibrance.
What can I expect? I expect to have no side effects as the ones I experience are minimal. Tips? will he take me off Anastrozole and then I will just be on Ibrance and Fasoldex?
I 63 single with 2 grown kids and 2 grandkids. I need to be here to watch my Reds grow up.
Sherry
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