Ibrance (Palbociclib)
Comments
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Thanks 50sgirl, Maire67, and JoynerL, that's very good to hear. I have had very few issues with the Ibrance and Letrozole and I really didn't want to start having any SEs as it's hard enough to maintain one's activities. Also interesting to read about the tinnitus issues. I have had it since I was fairly young but I was thinking the other day that it seems to be louder now than it's ever been. It sounds like I'm having a hearing test 24/7! Small price to pay, however. Thank you all for your input and good luck to all of you!
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Ceci, sorry I'm back again. I just saw your question about stairs. I live in a two storey house and, as I've mentioned until you're probably all tired of reading it! I have bone mets absolutely everywhere. I have no trouble with the stairs now that the treatment has taken effect and I'm feeling stronger. Before I started treatment I did because I was so ill so there's an improvement for me. I do take it slowly and carefully because the last thing I want to do is break a bone but I can do it easily.
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Nextmoondan....I have no vertigo whatsoever...just this swooshing sound.
It is interesting that so many of us are experiencing this. And some for such a long time! I was hoping it would just disappear -- but, maybe not!!
Hope.
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Thanks for replying leapfrog, that's good to hear.
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MS has caused tinnitis in both ears for 25 years. Mine is like a hissing noise. I'm totally used to it. These cancer drugs have not made it worse. Eyesight, though, is much worse. I just got new glasses before I started on them and now I'm sure I need a new rx.
ceci, I take Ibrance 75 mg, letrozole. and xgeva. These are the easiest drugs I have ever taken. Maybe it's the 75 mg but generally, I think the se are practically non-existent. Just wanted you to know a few of us are 75 mg and do fine, not just se-wise but efficacy, too. Having to drop down in dose is not a disaster. I think someone mentioned that their MO started everyone on 100 mg. It's amazing to me how differently different MO's handle these drugs. I'm sure you don't have to take them together. I take letrozole with lunch and Ibrance with dinner.
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Thanks for your input Jaycee, I really appreciate it. Let's see what dosage my doc will want to start me on.
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Hello again everyone, I've been MIA lately but I have been reading along and praying for you during those tough times. We returned a couple of weeks ago from our trip to Italy and it was wonderful but exhausting and I came home with a bad cold and severe jet lag and now I've got back pain to top it off which doesn't help my scanxiety before my PET on Friday. I've been off Ibrance for three months now for a couple of reasons so of course all I can think is the worst.
However, we did have a good trip but it is definitely our last, getting "too long of tooth" to do it again. Two of our daughters were able to join us and it was wonderful to share our love of Italy with them. So, life does not end with stage four. We just have to push ahead one day at a time.
Welcome to all the new people here, sorry you have to be here but there's lots of support for you.
Z, you have been on my mind and I so admire your courage in pursuing his treatment in Japan, we are all routing for you. It must be so hard to be away from home while you go through this even with your daughter there too. I know when I don't feel well, I just want to be home. Hang in there, it will be done soon hopefully with amazing results. We are all watching for the next big breakthrough. All good things for you!
Hugs for all,
Faith
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My husband, Jay, has Stage IV breast cancer. He was diagnosed 4 years ago. It is in almost every bone. We have been able to keep it there until today. We found out he has 2 spots on his liver. The doctor wants him to start Inbrance. Jay is adamant that he will not do chemo again. I’ve heard that this like chemo “lite.” Is it as bad as chemo
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I'm catching up from being a few days behind, here goes:
Hope, thanks for the insight on ports. I wish I had gone that route when I was originally dx 11 years ago, but I don't think it had quite been perfected back then.
Amarantha, whatever thread you follow, you will find hardy souls with words of encouragement and incredible strength.
Janet, glad your experience with 75mg Ibrance is so seamless. I'm on 125mg, which is doable, but your description makes me wistful for a low impact combo. My MO is very by-the-book, and as long as my labs will support it, she'll recommend the higher dose. It's my decision, but I figure the SE's are worth it as long as the combo is effective.
Leapfrog, you are an inspiration and I'm so glad you're feeling stronger!
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Hello Ladies, Haven't been on this thread since my oncologist decided I needed to do Taxol/Avastin combo and stop the Ibrance. Well I did 18 rounds and wanted to share my results as there is always hope! I started the combo in April. My CA 27/2 was 260 and I had over 60 tumors in my bones, liver, lung and lymph node in my neck. Here is my scan in Feb 2017 and my scan in September, 2017. I am in remission and my CA 27/29 is 28 (normal 0-37). I also went to Lourdes, France, Italy and Spain in the last two months. My Onc said I don't know what to do with you. Doing combo 2x per month till next scans. Warriors! Stay Strong 💪0 -
KimO, I've been told that Ibrance is not cytotoxic like IV chemo. The plastic bag it comes in says "chemo." My MO calls it a targeted therapy since it's a cell disruptor vs an all out killer. I did Taxotare and Cytoxan, and if pressed to compare the two I'dstill say that there is no comparison.
It's a very tolerable drug for most people. Frankly, the AI I'm on (letrozole) is harder in me with joint pain
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KimO I'm on my ninth cycle of Ibrance. It is not a chemo drug and the side effects are nowhere near as severe as chemo side effects. I have no idea why it should be labelled as chemo. Mine isn't. It's a targeted therapy. The reason that some websites and doctors say its side effects make it similar to chemo is because it causes sore gums, mouth ulcers, nausea and a very lowered immune system. Having said that, let me hasten to add that the nausea is mild, can be controlled and so can the sore mouth. I use Ondansetron for nausea and only need one wafer per day before dinner and Gelclair for the sore mouth when it gets too bad by the end of the Ibrance cycle. A lowered neutrophil count is an issue and can lead to Neutropenia in some people, quite seriously. However, even if the neutropenia reaches Grade 4, as mine is, my MO has told me that, for some reason as yet unknown, it does not lead to such a severe infection risk as chemo does with Grade 4 neutropenia. We are warned to look after our skin and try to stay away from coughs and colds and not to do gardening, which can lead to inhaling pathogens though.
Fatigue is something of an issue but, like jensgotthis, I find most of my side effects come from Letrozole but even those are tolerable.
I'm Stage 4 with bone mets and I feel much better than I did before I started this treatment. For me, yes, I have had to accept some lifestyle limitations but I'd already accepted most of those because of the bone met pain.
Don't be put off by the label. It's a manageable drug. Hope that helps.
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Hi Jaylea.....thanks for that!! Nice to see you back x
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I nearly forgot to share my news! I received the results of Monday's CT scan today. I've been having increased pain and my tumour marker, which loves to jump around, had jumped up a bit more than usual, to 510 last week.
Good news.....the CT showed no sign of disease in my organs and no progression of my bone tumours. They haven't regressed but they haven't progressed, which is what I wanted to hear.
My tumour marker jumped down today, to 450. I know it could likely jump up again next time but while it's still jumping down sometimes I'm happy.
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WOO-HOO, Leapfrog! Fabulous news!!
KimO, I hope that you'll read back through the string and that your husband will as well or at least that he will listen to you. Many of us, including me, have had virtually no side effects at all from the ibrance. And after nine months of treatment, I am stable. Bone mets only. I wish him and you and your family the very best.
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KimO, I am like Joyner and have virtually no SEs from Ibrance and Faslodex. I feel really good. My blood counts do go down, but they recover on my week off Ibrance. I am on 100 mg since my counts dropped way too low during cycle 1. I have been on this combo for more than a year and have seen improvement in bone and liver mets. My MO does not call it chemo either, btw. I was reluctant to start Ibrance because I had read about so many potential SEs. I have been pleasantly surprised. I hope that your DH has a good long run with minimal SEs on Ibrance.
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KimO - Let me be another voice in the barely any side effects camp. I was worried about the side effects, but have been very lucky. Like virtually everyone, my wbc counts are low, but I've never gone beyond mild neutropenia. It has been a very manageable medicine for me.
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Good morning!
Faith...Welcome home! I've been thinking of you and wondering when you were getting back. Sorry for the exhaustion, but I think that would be the case with anyone traveling abroad. Hoping and praying your back pain is nothing of concern, but I can relate to your scanxiety!! Wishing for the best results for you!!
KimO...Welcome! As others have said, there is no comparison to this drug and chemo infusions. I think your husband will be pleasantly surprised with little or no side effects.
Jaylea...Funny thing about the port. I had the same radiologist insert this one that I had 7 years ago! Like you, I am still on 125 mg. of Ibrance. My side effects are very minimal. It sounds like your onco and mine think the same way...as long as my labs are ok (even though they might be low) I will stay on this dose.
Leapfrog...I'm doing the happy dance for you! Wonderful news!!
Have a great day, ladies!0 -
KimO, why not ask if your husband could start on 100 mg (some MO do this for everyone) or even 75 mg. When I started having SE similar to chemo (diarrhea for me, NOTHING ELSE), I dropped down from 125 mg to 75 mg. My choice. I TOLD my MO that is what I wanted to do. He agreed. I have seen NO DATA showing efficacy differences among the different doses. Why would they have the lower doses if they didn't work? I have NO side effects on 75 mg. Ask Claudia when she gets back (hope she is having fun on her riding trip). She is on 75 mg, too. Same comments for you, Jaylea. If your MO wants you on 125 mg, ask her why. Has she seen efficacy data that shows it works better? If she has, I'd like to see that reference. I've looked. Can't find it.
KimO, Ibrance is NOT chemo. Being on traditional chemo was not living to me. I wouldn't have taken Ibrance or kept taking it for 19 months is it was.
Sometimes I wonder this: why don't MO's start on 75 mg and move UP in dose as side effects are well tolerated? Just a thought.
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Finally found something. This trial:
https://clinicaltrials.gov/ct2/show/NCT02630693
is comparing 125 mg and 100 mg, hypothesizing that the lower dose will be better due to fewer tx interruptions. Hmmmm.
I know I've suggested these ideas before. Didn't someone post something about a trial that used very low doses, like 5-15 mg, and the drugs still worked? My memory sometimes does the reverse of normal senior forgetting. I remember things that never happened. I really remember this, though. Does anyone else?
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Jaycee 49 I agree so much with you. As a doctor (although not at all an oncologist) and patient for different ailments, starting with a lower dosage of any medication and increasing it if necessary as the body adapts is usually the norm for most meds in most cases, at least in my country, but there are so many different ways to do medicine and these medications are still not fully understood, and it's still confusing for everyone, probably for oncologists too. Maybe they feel they have to be as aggressive as possible from the start because of the nature of the disease. I hope they will at least start me at 100mg and not 125mg (I don't necessarily want to lowest dose either).
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Good news! I have just completed my third cycle on Ibrance, the first at 100 msg. My oncologist called this morning to say the results of last weeks CT scan were all good news. The liver mets have shrunk and the bone mets are showing sclerosis in response to the radiation, which is what we wanted. This is better than I was hoping for as many women on this site, who were previously treated with something else (in my case Xelodia) seem to take some time before they show an effect.
Ceci: With oncology drugs, the maximum dose is always given up front and then titrated downwards if necessary. You can never go back to a stronger dose on cancer drugs. I don't know why this is, but after six years as a patient rep on an oncology drug committee, it is one of the things that I have learned.
Jo
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Hobbs and Leapfrog- great news!!
Jaycee- I have a vague remembrance of using 20% of the dose of Palbo in addition to something else as a trial, but, don’t remember details. I’ll look if I bookmarked it when I get home. Maybe someone else knows more.
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Hobbs, that is really great news. My MO told me when I dropped down to 75 mg that I could "work my way back up" so I think with this drug, you can go up in dose. At least according to my MO. I think he is up on this drug. I hope so.
Leapfrog, great news for you, too. Let's keep it coming.
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Hi ladies! I was diagnosed with MBC in April after two previous diagnoses of primary breast cancer. I am 48 years old. Have been on Ibrance and Letrozole since May, initially at 125mg and now at 100mg. I'm doing well so far and my first scan was completely clear of any disease. Still, I have felt fatigued this cycle (5). Need to focus on good eating and exercise. I also need to get on my supplements again which the docs said they don't object to but didn't know much about. I am taking green tea, astragalus, and kinoko gold per the suggestion of an alternative wellness cancer coach. It's a lot of pills each day, but I did feel good when I was strict about getting them in. Any of you have any words of wisdom re: supplements? Is it all nonsense in terms of fending off fatigue? Happy to be here and share whatever I can. I am based in DC and have a mixed team of doctors from both Georgetown and Johns Hopkins. I am also part of a personalized immunotherapy trial at NIH which I will go through with if the disease progresses. It uses therapeutic Tumor Infiltrating Lymphocytes (TILs) to try and kill the cancer. Experimental but have it in my back pocket. Thanks for this amazing forum. xx
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Joining in with everyone Ibrance is not like AC T . I started on 75 mg last month and side effects are tolerable. I can take care of my grandchildren, keep my house in order and cook up a storm. I started low because of another health issue. Counts are down but so far so good.
Leapfrog and Hobbes that is great news. So good to hear.
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Hobbs...Congrats on the "good news"...music to all of our ears. Thanks for the interesting info on cancer drugs.
Palisadesmom...Welcome! I will be starting my 5th round of 125 mg. on Sunday...this is my "off" week. As for the supplements, the only things I take are Calcium Citrate/D3, Centrum Silver for Women, and B-12. When I was first diagnosed with primary breast cancer (7 years ago), my oncologist at that time wasn't big on supplements. His theory was they were a waste of money and if you ate healthfully, you didn't need supplements. He left it up to me -- if I wanted to take them, it was fine, but he didn't think they were necessary. Hey, if they make you feel better, I would take them.
So nice hearing the good reports this week! Lets keep it going.
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Question? My Onc has prescribed 50,000 units of D2.....what is the difference in D2 and D3....I thought I was suppose to take D3 for immune build up. In checking some references online D2 is not as effective as the other. If you have any info please share.0
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I'm so happy to stop in and see the good news. Hooray for Leapfrog and Hobbes! The magic medicine continues its good work!
I'm looking forward to hearing more about the lovely trips you all have taken. I managed to turn 68 this week and haven't forgotten that I didn't expect to make it to 45! God is so good.
Love to all of you! Pat (1)
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Hello
I am under ibrance (palbociclib) for 7 months now. I was supposed to have a mastectomy + 3 nodes taken out and a radiotherapy. But now the doctors fear that stopping the palbocilib for the operation would be more harmful than anything;
Has any of you been under surgery while taking palbociclib ?
thanks
ps the treatment works for me my CA-15 were at 62 and now are at 21 and the breast tumor has diminished in its mass by 75% (it was 5 cm, however it can of exploded in several bits in all the right side of the breast - hence the idea of the mastectomy)
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