Ibrance (Palbociclib)
Comments
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Deana - Did Ibrance not work at all for your friend or did it work for a while and then she progressed?
I know some of you have been tested for other mutations. If you were tested, when/how was that done? I've been tested for the BRCA mutations, but nothing else. Just wondering if this was something you pursued on your own, or docs recommended?
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Moissy, I'm not sure if Ibrance worked for her at all, but I suspect it did not. If it's important to you, I can ask her. She's very active in the mbc community, but I don't know her tx hx.
I have not personally been tested for mutations, but I think it's a great idea for anyone encountering drug resistance . Thankfully, I haven't yet been in that situation, and my onc does not automatically test -- at least not so far.
I think Romansma (Hope) had one done -- the Guardant 360. You might want to PM her if you want more info'. She hasn't been posting much recently. Deanna
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Thanks Deanna - I had been hearing more mention of other genetic mutations and was just curious if other testing was becoming more common. No need to ask her. I'm guessing oncs just start out trying most common therapies with the hope that it will work. And if at some point they've run through the more common approaches, perhaps at that point they consider other testing. This more targeted therapy seems to be the wave of the future, and I feel so thankful that all of us have the opportunity to benefit from this type of therapy. Thanks for the info! I'm looking forward to hearing more reports from ASCO conference.
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On the surgery question, Stefajoy, in your situation I would have wanted the breast surgery to get to NED, as you did. In fact, if something shows up again in the breast, I will ask my doctor if we could consider a lumpectomy with local anesthesia. That would be a different situation for me from when the breast tumor was diagnosed at the same time as a liver full of mets. These decisions really do have to be individualized.
Jobur, I think you are right on that there is a grieving period following a stage iv diagnosis. I remember when my therapist pointed that out, and said that you can get through grief and feel better, or at least more neutral. It gave me hope that I wouldn't feel so sad forever.
That is an interesting note from Deanna about the MYC mutation. Is that a mutation in the person (like BRCA), or in the tumor (like PIK3)? My onc ordered Foundation One genetic testing on the breast tumor because it was surprising that I went stage iv and so quickly given my original diagnosis. But the test showed no actionable targets. I get out the report periodically and look at it when I read about new research. For example, I was able to see that there was no androgen receptor mutation when we were talking about xtandi here.
Welcome, Auburngirl and Donna.
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Auburngirl, I meant to say (unsolicited advice coming) that if you find you have Ibrance fatigue, be kind to yourself. Prioritize and accept that reasonable expectations for yourself might be different now. There is a good blog article about managing the holidays here on BCO this month. I hope you and your kids can forget about bc for a while and have some fun.
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Donna, I have had incessant watering of one or both eyes for several months, so I think for me, it is a SE of the Ibrance. I also get periodic cysts in the eyelids. My onc suggested it might be inflammation and gave me a prescription for eye drops, but I can't really say that it has helped much. Now starting to get sores in both corners of my mouth and no amount of chapstick seems to help!!
Just feeling down and out....no Christmas spirit at all. Tired of going to bed at 7pm and sleeping 11 hours. Tired of having no energy....just plain tired! Finishing 3rd cycle of Ibrance now....hopefully everything will level out soon. Blessings to all of you!
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I did a quick search about MYC (mentioned a few posts above) and it seems to be a possible mutation in tumor cells. In my case, the Foundation One report checked for it and no MYC mutation was found.
Masonsmawmaw and Donna, I have experienced the uncomfortable, teary eyes. I think it might be related to Ibrance because it is most noticeable during the later days of each cycle, and it was worse on the higher dose. Lubricating, artificial tears eye drops do help. For the mouth, I found that a rinse of 1/4 teaspoon baking soda, 1/8 teaspoon salt, 8 oz water helps with healing. And I only east spicy food on my week off. I hear you about being tired of being tired.
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My eyelids got very dry and I had to rub them a lot and also tearing. Also a few mouth sores and cracked lips. Blistex helped and TONS of water!
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So I have a question. I normally need a few extra days for my blood counts to rebound before starting my next Ibrance cycle. It's so consistent, my onc has stopped re-testing when my lab work (done when I get my Faslodex shots) doesn't coincide w/my Ibrance cycle, and just has me wait 5 or 6 extra days to restart Ibrance. So this month, counts were low at lab work, which was mid-Ibrance cycle on 11/25. Waiting until the past weekend would have been the usual timing (5 or 6 extra days) for my wbcs to rebound. However, we were in Las Vegas last week, and I got really sick the day we got back -- starting Thursday night, and I haven't wanted to restart Ibrance with this wicked cold/cough/sinus infection. So what would you do? Just wait until the cold is gone and stop worrying about it? Does it really matter if I have to wait another week? I had an antibiotic on-hand, but hated the way it made me feel, so am doctoring with more gentle natural and homeopathic stuff. I don't have a PCP at this point, and hate to contact either of my oncs about a cold w/no fever. But I can't stop worrying about it either.
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Hi Deanna-I'm sorry to hear you are not feeling well-especially after enjoying some time away. If it were me, I would worry about restarting the Ibrance if you already have a sinus infection for fear that things could worsen-especially if you are opting out of the antibiotic. I understand not wanting to bother your onc on this, but wondeing if either of your oncs have a nurse that you could call and just ask by phone?
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That's probably what I should do, Moissy. Both of my oncs have PAs. The one @ UCLA has the most experience w/Ibrance, so can probably reassure me about what to do. Thanks! I'm going to email her now. I appreciate your clear-headed thinking on this -- clearer than mine at the moment!
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Hope you are feeling better soon!
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Deanna, I had to wait an extra week to restart my Ibrance cycle while awaiting test results. My ONC did not seem to think it was a big deal. So many of us delay a cycle for low blood counts, as well.I think you are probably safe to do so. It's more important you get rid of your sinus infection first. Just my two cents.
Stefanie
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DLB823-Good question about Cough/Cold/Flu/Sinus problems- it's that time of year and I'm sure many of us will face the question. I checked with my pharmacist about taking cold medicine and there are no complications with the Ibrance. My Onc told me I could take another week off if I didn't feel well, but after two weeks off I really wanted to get back on track. My Cold turned mild so I started my 5th cycle yesterday. I feel so great after two weeks off, but this time I've gone done to 100 mg with hopefully just one week off. Mathematically it worked out to more Ibrance in my system over a few months (vs 125 and 2 weeks off). It was the indigestion that really got to me so I will be proactive this time and daily take my antacids. Also tumor marker went down another 7 points- YEAH!! Right direction.
As the Faslodex and Ibrance schedules don't coincide the blood tests are done a little differently for me, I believe before one there is is just one blood test, before the other there are more tests. I just had my tests this week and next week is Faslodex so I'll see what my Onc has to say. I guess I never used the term MO (Medical Oncologist), Onc just sounded good to me and easy to remember. Happy Holidays to all and enjoy the Sunshine when you find it.
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For what it's worth, my onc did get back to me quickly and said not to restart Ibrance while I'm sick, and also to get my counts checked when I am ready to restart. Since I'm due for Faslodex and a blood draw in just about a week, I may just wait and see where my counts are then.
YAY to your TM's dropping, Nina! And thanks for sharing your pharmacist's input on taking cold meds with Ibrance.
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Deanna... I hope you feel better!!
I am experiencing the worst joint pain ever. I start cycle 7 on Thursday. I could barely walk today as I could not put pressure on my feet and my hands were a little swollen. If my feet are elevated, pain is bad when I go to stand. Once I get past the initial pain and keep moving I am good. Any advice on what to take to help with the joint pain??
Monika
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mdillard04 - I have fibromyalgia, as well as ostearthritis, along with the mbc. So I take Relafen 750 mg (generic: Nabumatone) a prescription anti-inflammatory once every 12 hours, along with 100 mg of Tramodol. I also have 7.5/325 Hydrochodone as an extra source of pain control. I hope that might be helpful info for you.
dlb - because my wbc's were very low, my MO had me stop my Ibrance for a whole month and now I'm on the 75 mg dose. I was concerned about the stopping & starting of the Ibrance initially, but my MO said it would be ok. I hope you feel better soon.
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Monika, what does your onc say about this? I don't have any advice other than to keep moving. I will say that my pain and stiffness seemed to get worse after a few months, but have now decreased, as if my body has adjusted to the drugs. I think I just finished cycle 9.
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Monika, I'm not on Ibrance (yet), but I am on the other two drugs you are on. I started on Meriva-SR (Thorne brand) curcumin two capsules a day about two weeks after starting letrozole. When I first started letrozole, I swear the joint pain hit me overnight and got worse daily, to the point it was utterly distracting. Once I started the curcumin, it gradually abated to a tolerable level. It's not competely gone, but it's noticeably better. I'm not entirely sure it's all due to the curcumin and know that drug side effects can build over time and it may not always be helpful to me, but it's worth a shot. You might ask your oncologist if they approve of your adding it first.
I hope you start feeling better soon. This whole thing is so hard, I know. Hugs.
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Monika, I'm also a big fan of curcumin. What I've found is that the benefit sneaks up on you subtly after a week or two or three, so that you may not even realize it at first. But then if I stop taking it, the arthritis pain is immediately noticeable -- like within a day or two I have a harder time just getting out of bed in the a.m. I've told quite a few people about it -- like my hair stylist who was having a lot of trouble standing all day and using his hands -- and he says the difference is like night & day. I think it's worth a try. I haven't tried the brand Lovelife noted (although I know Thorne is a superior one), but I have had equally good results with Life Extension and Jarrow.
Also, my DH uses peppermint oil, which helps his muscle aches. Not sure if it's as good for joint pain, but maybe worth a try.
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Happy to report that my CA 27-29 was 44.2 today, started at 203 in April
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Lynnwood, Fantastic
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Yes, that is fantastic Lynnwood!
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Lynnwood
Great news. I've been watching the info on this drug. If I can get my mets under control (bones liver and kidneys) my onc wants to move me to this drug. Currently on gemzar which is working but need to get TM down more. I'm glad for you you are responding so well. I hope I can join you.
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Linwood, that is excellent
Marilyn
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Lynnwood - Love hearing your continuing great news!!!
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Lynnwood, very good news about the TMs!
Dlb mentioned mint oil. Here is a source that suggests mint may not be the best thing for hormone receptor-positive bc, and another one that does not mention that as being a problem. I don't know, but I would do some research.
http://foodforbreastcancer.com/foods/mint
https://www.mskcc.org/cancer-care/integrative-medi...
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Such an impressive decline in TMs, Lynnwood! Love hearing that kind of news! Good for you!
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great news Lynwood!!!! Happy dance time!!!!
Babs
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Anyone with liver mets experience liver pain while on Ibrance/Femara that gets worse until the week off?
I have only been on for two cycles and my liver enzymes are going up, too. When I am off the Ibrance, I feel fine, but on the Ibrance, I am in pain. Care to weigh in?
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