Ibrance (Palbociclib)
Comments
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hi Mdillard,
Did the nurse explain why she thinks it would be a good idea to get the mastectomy? I am stage 4 after lumpectomy for stage 2 diagnosis in 2011. My onc is not recommending mastectomy and neither did onc I saw for 2nd opinion.
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I am about to start Ibrance for the first time next week. After reading this board I am a little worried about the side effects. Can anyone tell me what
to expect the first time?
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Tedmom, I would recommend eating foods that are easy on your stomach and your mouth until you see how it affects you, and your body adjusts.
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tedmom, I don't see mbc in your signature line. Have you been re-dx'd? If that's your situation, I'm so sorry. Do you know yet what you will you be taking with Ibrance?
I know when I first saw the list of possible SEs for Ibrance, I was also concerned. But honestly, I think for many of us it's been a relatively easy drug. My worst SEs have been fatigue, gas & bloating. But they're not constant, have improved some with each cycle, and I've also learned to compensate for them by going to bed earlier, avoiding foods that seem to exacerbate the bloating and using OTC products for the gas. Other than that, you do have to be careful re. low blood counts and exposure to illness -- so things like frequent hand washing and possibly avoiding big crowds on the days your counts are especially low at the end of each cycle are important. But you get used to it. I haven't really had the mouth sores or bloody noses that some women report, or I've had them so lightly, they weren't an issue.
I also think that when we talk amongst ourselves here we may tend to share and commiserate just b'cuz everyone here understands, and if you're reading and not yet on the drug, it might sound a lot worse than it is. At least that's my take on it. Of course, there are occasional situations where someone has to stop the drug or go to a lower dosage b'cuz their counts don't rebound. But other than that, I don't think any of the potential SEs are all that bad, especially compared to chemo. Just my experience w/it, and hopefully yours will be even better. Deanna
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Tedmom I am tolerating the drug really well. The only SE I have is fatigue at end of cycle. I also take letrozole and I think the two together give us all different symptoms. My biggest complaint is sore scalp that comes and goes. I always take it after meal. I have tried different times and the I found out that after dinner was the worst for me. I will be starting cycle 5 soon and will move to after breakfast. I pray I can stay on this for many years.0
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mdillard, does John Hopkins have a team approach? Could the breast surgeon and onc meet with each other and discuss? Maybe the pharmD and other doctors could join in. Is John Hopkins a teaching hospital? I hope everyone sits down with you together. I was first at Leo Jenkins Cancer Center and the cancer team would meet and discuss different tumors, or cases, with student's there able to ask questions. They came to a decision about the plan they thought best and a nurse was in charge of coordinating everything. How do they handle it there? I am not at a teaching hospital now and go to a cancer center where they do not have the team approach. Sometimes I feel like I am lost at sea. Everyone here is helping me more than I can say with your posts. I do appreciate it. Please will you keep me posted about how you are doing and what the decisions are? I will be thinking of you.
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I so appreciate all your advice! I had forgotten to update my recurrence but it should be there now. I will be taking Letrozole with the Ibrance. I was on Arimidex and almost made it to the "magical" 5 year mark. So much for that! Does anyone know why, since Arimidex and Letrozole seem to do the same thing, everyone seems to be taking Letrozole? I am trying to figure out if it makes a difference when I take it. I know it has to be taken with food but is morning or evening better?
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I finally added my diagnoses and treatments. Hard to tell the whole story on the checklists. We each have such unique complicated stories. Essentially I had 2 stage 0 cancers, one on each side 7 years apart. A year after the second one (and a double mastectomy) I got the stage 4 dx. The other weird thing is that I was originally HER2+ and was on Herceptin and Perjetta. Now HER2- and with you on Ibrance
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Monika, Whether or not to remove the primary tumor after bc has gone metastatic is one of those ongoing questions that comes up over and over and no one seems to have any science based answer. I was not clear from your post
"Last month my onc stated that he did really see it being advantageous and he is not convinced."
what your mo's opinion is. Unless someone can present you with fact base evidence that it is or is not beneficial, I'm afraid this is one of those times when you must decide what feels right to you. Would you be considering mastectomy or lumpectomy? How would you feel about your body after undergoing one of these surgeries, would you also be considering reconstruction? If at some time down the road you have progression, will you blame yourself for not having the primary tumor removed? I don't understand the comment about the cancer being worse if it comes back. I'm sorry, I don't remember your particulars, are you currently NED? Did you have "only" 1 or 2 mets or many? If you could be considered oligometastatic that might be reason to go ahead with surgery. Take some time and read as much as you can about the pros and cons so you can make an informed decision.
I hope aromasin will be kinder to you, I know letrozole has been hard on you. I wonder why your mo is going to aromasin rather than fulvestant. I know there have been clinic trials on Ibrance with letrozole and fulvestant, but not aromasin to my knowledge (which is admittedly limited!)
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Hi mdillard04,
I was stage iv at initial diagnoses also. I have bone mets. I have not had a mastectomy or lumpectomy either because, according to my medical team at Mass General (MGH), it is not "standard of care" to remove the primary tumor after metastasis unless the tumor is causing pain and/or ulcerating (which I understand is rare) OR the patient simply wants it removed (which the surgeon should respect but sometimes takes convincing). The reason is that the purpose of the mastectomy/lumpectomy followed by chemo/radiation is to eradicate the cancer before it has a chance to metastasize. Since our cancer has already metastasized it would be like closing the barn door after the horse has already run out. In addition, "studies" have shown that there is no evidence that mastectomy at stage iv improves your chances of survival. The treatment for stage iv is systemic, not local as is the case for people in earlier stages.
I'm a little confused by what the nurse is saying about the cancer being worse if it reoccurs. Surely she is aware you are stage iv? Recurrence or relapse happens after someone has already been treated for an early stage cancer and the cancer returns. If the cancer returns to the breast it is a recurrence if the cancer appears in a distant site like bones, lungs, brain etc. it is a metastasis. When you are stage iv you don't get recurrences you just continue to metastasize.
I've read the comments from the other wonderful women on this thread and I agree with them. You need to have a serious talk with your surgeon and medical oncologist to discuss the pros and cons so that you truly understand the reasons to do it or not do it. And get a second opinion. It is a tough decision. But ultimately it is your decision and you should arm yourself with the facts so that you can make an informed decision. I'm going through it myself now because my primary tumor has been causing me pain and it appears to be pushing through the skin. I have consulted with my surgeon and MO 3 times now and we are leaning toward a lumpectomy. We are just waiting to see how I respond to Ibrance/Letrozole protocol. I'm only in my second cycle. The surgeon is hoping to see the tumor shrink a bit more before removing it. However, had I not been experiencing these two issues I would not even be entertaining the idea of surgery.
I wish you well. I'm sure you will come to the right decision for you.
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read the toradol thread if you're considering surgery.
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Monika, I've been thinking about your situation since I first read your post, and what concerns me is that if you were to have surgery, you would have to be totally off any drug that lowers your immune system function, which would include Ibrance. Chemo would fall into the same scenario, which is the other reason surgery is not often recommended when we're Stage IV, especially discovered de novo - not just the fact that it's already out of the breast and lymph nodes, but that it delays the use of chemo or other meds. So I'm wondering it that's what your onc's nurse meant by reoccurance -- that your mbc could flare worse than it is now -- especially if things are very stable or even NED elsewhere -- if you were to get off the meds you're on for several weeks to allow your immune system to reboot for a successful surgery and healing.
One thing I would want to know if I was in your situation --- what, if anything, has happened to that 2 cm. lesion since you've been on meds? Has it decreased in size? 2 cm. isn't very big to begin with, and It seems like it should have decreased if you are responding well to your meds. If it has, then perhaps that's also what your doc's nurse was thinking -- that taking that very small lesion out to reduce tumor burden might not be worth the risk of ramping things up elsewhere if your immune system is distracted and focused on healing your surgical wound, but your mets get out of control.
As you know, I am also a huge fan of second and third opinions -- not always b'cuz you're going to find a better doc or even to have your first doc's opinion confirmed -- but sometimes just b'cuz a different doc will come up with a reason or an explanation we hadn't heard before -- whether it's new information or just the way they explain something we've already heard, but suddenly it makes sense for our situation.
tedmom, the reason many women are on Letrozole w/Ibrance is because that's what was used on the trials. Some oncs are RX'ing other A/I's w/Ibrance, but there's no research data to support doing that, so many insurance companies won't pay for different combos. And for what it's worth -- when Arimidex failed me after about a year, my UCLA onc told me it can be better to go to something that works by an entirely different mechanism -- which is why she put me on Faslodex rather than Letrozole with Ibrance. Of course, we're all different, but it might be something to ask your onc about since it sounds like you recurred on Arimidex. As far as whether to take your meds a.m. or p.m., you'll find a wide range of answers here. I started at p.m., but when I had some sleep issues, I switched to mid-day, and am happy with that for now. Taking my Ibrance earlier in the day also seemed to help with the bloating, although it could have also been just my body adjusting to it. Whenever you take it, just be sure it's with or right after a sizeable meal.
Kaption, wow -- what a shock to get a Stage IV dx after two Stage 0 dx's. You are so right when you say our diseases are each unique and individual. Deanna
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Welcome AnimalCrackers, both to Ibranceland and the forum, though sorry you have reason to be here. How is the Letrozole/Ibrance combo treating you so far?
I was dx'd with mets 1 month after undergoing lumpectomy and snb. I had symptoms of bone mets (suddenly needed a cane to walk) but neither my pcp or surgeon suggested a scan prior to surgery. If I had know then what I know now...
Ibrance (with Faslodex) has been very effective for me, I hope it works well for you too!
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Wow, so many intelligent and thoughtful sisters here helping each other think through everything. I'll add my comments, for what they're worth.
Re: Arimidex. Tedmom, I agree with Deanna that you might ask your onc about faslodex with Ibrance, since letrozole is similar to arimidex. He may say that Ibrance should help the aromatase inhibitor work better. But my layman's thought is still why not go with something less similar to one that failed you.
Re: Aromasin. Mdillard, I haven't heard much about pairing Ibrance with aromasin. Of course it seems logical because it is also an aromatase inhibitor, but if letrozole isn't kind to you, I wonder about using faslodex instead. The reason is that way you could save the Aromasin + Afinitor combination for later. This is what my onc is doing; she says that would be my next treatment. Also, my onc says faslodex is a pretty easy option as far as side effects.
Re: Ibrance side effects for Tedmom. I also have similar thoughts as Deanna on this. We talk to each other about side effects, but mostly it is problem-solving, getting reassurance that something is normal or typical, and knowing someone else understands. At the same time, most of us know we have it good in the stage iv treatment world and hope to stay on this med for a long time.
Re: Surgery for stage iv, also mdillard's question. This is certainly a subject under current discussion by oncologists around the world, and I recommend research and second opinions from oncologists and not just surgeons or nurses. As Jobur points out, you do ultimately have the power to say what you will do for treatment. However, I don't think it is right for you to have to make decisions without trained, educated, experienced oncologists giving your their opinion about what is best for you in your unique situation, and explaining why.
Here is my experience, and I give it as food for thought and to stimulate your conversations with your own doctor, not assuming that what is right for me is right for you. I had a breast tumor found at the same time as the extensive liver mets. (The breast tumor could have been a new primary, but my onc thinks it was metastatic disease.) I thought I would need a mastectomy, because that is the recommendation for a local recurrence that is stage i-iii. But my onc treated me systemically with taxol, and used the breast tumor to monitor how the taxol was working. She could feel it shrinking as the weeks went by. Once I was NEAD, I asked again about breast surgery, and she made two points. First, she thought surgery more of a risk for me because the inflammatory reactions it causes could promote metastasis. Second, she said that breast would be a useful "canary in the coal mine" to help judge whether the cancer was flaring up in the future. However, she did hint that if something popped up in the liver again, we would consider local therapy for it to get me back to NEAD. So I think if a person is close to NED or oligometastatic, the usefulness of surgery could be different than if they have widespread disease. Perhaps the nurse is concerned that your breast tumor could mutate to a more aggressive type and cause more trouble that way? If my breast tumor does come back, I will ask about a lumpectomy, with the toradol that Zills mentioned because it seems to help with that inflammation connected with surgery. But if my onc still advises against it I will ask her for her reasons and I will likely go with it, maybe after a second opinion. I want you to feel comfortable and not confused about your treatment plan, Monika.
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Greetings, AnimalCrackers. You've got me going around humming that Shirley Temple song now. I hope your breast pain goes away very soon, and that Ibrance + letrozole will work well for you.
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Thanks ladies for all your insight. I am not sure whty my nurse keeps bring it up. She seems to think that if the cancer becomes active again it may go back to the primary site and become worse?? My MO really does not think having the surgery is necessary and is not convinced based on studies and statistics.
I was able to get the 2 very small lesions in my liver wiped out by Ibrance/Letrozole combo. Almost NED except a small area in the primary site that has minimal FDG uptake on the PET. I waivered about the change as the combo had worked pretty well for me. Fasoladex wasn't even mentioned as an option. Nurse stated that Arimidex would have the same effect since it is the sibling to letrozole, hence Aromasin being suggested
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I had ILC in 1997 in left breast. MBC to the bone 18 years later. No recurrence in breast.
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Yes, Deanna it's rare. Last winter I had a temporary onc while we were in FL for 3 months. He had been in practice a long time. He said I was the first "2-time-stage-0-turned-stage-4" he'd ever met. It's rare, but does happen. Disagreement among 3 onc's I've discussed it with as to which one metastasized.
Mdillard, best wishes in your decision. Prayers for your continued progress on Ibrance.
Breast cancer is SO complicated. Most people just don't realize all the factors!
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Deanna very well explained.
Have you ladies, heard of swelling at the calves or and ankle area due to this tx? Could it be a clot? Dani will have BT checked tomorrow, we don't have any idea where her PLTls are holding, it's concerning. It's a bit painful, it's moslty on one side not both legs.
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mom, my onc always checks my ankles and calves- but she did before Ibrance too. I'm not positive, but I think a blood clot hurts and may be warm. Glad she has an appointment today.
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Mom - my onc checks both ankles on Ibrance. Swelling in one ankle (which I had once), may be better than two. Please keep us posted. Shetland I remain on Arimidex, plus Fas and Ibrance, starting Xgeva in 2 weeks. SEs from Ibrance continue - bleeding gums, hair loss (now wearing a halo - which is a fab hair piece) and fatigue. Going to onc on Thursday to check hemaglobin and crits. Hoping for no more transfusions.
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So on Thursday I will be starting Ibrance along with Femara and Zoladex. I am getting excited to start. I know that must sound so odd, but I was diagnosed with breast cancer in December and this will be the first official step to treating the disease. Up to this point it has just been test after test and meeting with so many Dr.'s to get a game plan together. As of now, I will not have any kind of surgery to my breast, but I will hopefully have an oophorectomy in late May or early June. I am hoping the side effects aren't too bad and this gives me a good chance at being around for a while. I read the study and saw that Ibrance is on average giving about 20 months stall in progression, but of course I am hoping for a lot more. We can hope right? I am in that small group of women who have been diagnosed with stage iv with my initial diagnosis and I am only 37, double whammy right? Anyway, it is finally getting more real.
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Phrogger, it does feel good to get started DOING something. Best wishes on this treatment working a long time!
Lalady, please tell me about the halo. I'm back in caps and bought a cute wig for dress up. Yes, my hair has thinned on top only. It also seems like it does not grow at all!! A halo sounds more comfortable than a wig. (But the wig does let me be a blond again 👍) My wig lady did not mention it as an option, so I may not be a good candidate.
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What is a halo please? Not angelic enough to know, ha ha!
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Ladies - here is the website for Halo Couture http://halocouture.com/. I have long hair, thinning on top/bangs, so bought a fall which matches my hair really well. It's not noticable at work and so tired of hair shedding everywhere. You can have halos cut and styled as needed since they are human hair and not a full wig. Lots of stars wear these to increase volume, so why not us 4 star girls? Happy to share.
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thanks, lalady. Think my hair is not long enough, and what I have on the sides is not quite thick enough.
For those just starting on Ibrance- don't let me scare you. I have thin hair anyway. So, it didn't take much to put me back in the caps/wig.
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Kaption - please show your hairdresser the fall in the shorter version (12 inches) which you can cut as short as needed. The fall has 4 clips into the hair on your head and covers thinning areas on top; like your part, bangs, etc. and adds volume to the sides. I got the 16'' version and blended it with my own hair. Looks good on top and I have bangs again, not blonde threads. Much lighter to wear than my old wig and more natural.
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If I wanted to turn short hair into long for a performance, would a halo work instead of a wig? Long wigs look huge and ridiculous on me.
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thanks for the suggestion, lalady! Wigs are not comfortable to me.
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I started taking letrozole and Ibrance 21 days ago and was doing fairly well on it until today. I had a small breakfast of toast with a little jam with my morning pills but before long found myself in the bathroom watching all that go down the toilet. I slept for a couple more hours and then took a compazine before having dry toast and some applesauce, Before long, that same feeling came over me, and I vomited that. The rest of the day, I only drank water. Tomorrow is my break from Ibrance, and I only take the letrozole for 7 days. I hope this will give me enough time to recover. Has anyone else experienced this? It's only been my first cycle.
Diane
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