Ibrance (Palbociclib)
Comments
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Arbo- They check magnesium especially if you are getting bone strengthening (zometa xgeva) which depletes your magnesium levels.
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So, we're supposed to stay away from iron or not use iron supplements? I am not currently taking any iron supplements, however, foods considered high in iron are:
Foods rich in iron include:
- Red meat.
- Pork.
- Poultry.
- Seafood.
- Beans.
- Dark green leafy vegetables, such as spinach.
- Dried fruit, such as raisins and apricots.
- Iron-fortified cereals, breads and pastas.
I imagine this is a case where the benefits of dark leafy veggies and beans outweigh the iron aspect?? I sure hope so since I've been eating a TON of dark leafy veggies
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I've also had lightheadness and some nausea. My onc thinks it's because of my lower sodium levels. I have always been one who drinks a lot of water and now I'm drinking even more as is recommended to flush the drugs out of our bodies. However, he also told me to drink either some V8 juice or tomato juice which is what I do now and it seems to help. BTW, the letrozole also causes dizziness. So, take a look at your test results and if your levels are getting into the 130 range or below, try some tomato juice and see of you feel a little better. Just a thought.0
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Thanks Ladies!
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Thanks Deanna and hugs to you too. I did get an appointment for a second opinion on Thursday, way sooner than I expected! It's not that I don't like or trust my Onc ...just sometimes I feel she is a bit disconnected or something. Can't quite put my finger on it. I will admit that part of it is my fault as I have been soooo busy with work and life that I didn't go armed with a list of many questions this time. Plus I was thrown by her wanting to change my meds already. I too think it is a good idea to forge a relationship with a second Onc in a major center that may have a lot of experience. So am formulating a list of questions for her on Thursday.
Aurora, they often pair Ibrance with AI's. I just wasn't sure if Arimidex was one. Zill's is on this combo and GG27 just answered my question as well by doing the smart thing, reading the literature! LOL!
( I'm so glad work is ending for the summer....getting wonky) Zill's I can't believe they would make you wait a WEEK! I would be a basket case. The weekend was bad enough....Thanks Hummingbird, I already feel more confident with all the comments here, but seeing the 2nd Doc will too. I need to step up my involvement...
HLB, I went off only due to liver enzymes elevated. The scans came out improved. Enzymes have since returned to normal but still not sure which drug was causing that (and other SE's). I think she said I could return to Femara without the Ibrance down the road. My TM's this time were going up on Faslodex and my existing tumors (2) showed a slight growth and increased uptake.
Momallthetime, I am not sure why no radiation. I think they try all the AI's and targeted stuff first? Or if there is more than one lesion they think it doesn't do any good? One more question for my list!
Thank you Z and now that I will have some time off I want to look into supplementary avenues for SE's as well. Plus get my lazy butt moving.
Welcome arbojenn!
Robin, I have had lightheadedness on the 125 mg dose. Will try some of the supplements Kathryn suggested. No iron though!
OMG Deanna, How do you stand that kind of heat? I would be in the pool with ice tea all day. Soup would be tough!
Take care all!
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Hi Artist,
I wonder who you will see at which center. I've been to UCSF for surgery and consults many times since 1998. They're good at what they do. But so is UCD in Sacramento.
Glad you're breaking into Summer holidays soon. You so deserve a short break from work...and a very long one too.
Healing light for you, Artist,
Stephanie
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Artist I'm glad you got an appt that quick and will be very eager to hear what they say. I can't help thinking you are being taken off the best treatments way to quickly. Before Ibrance was approved we got letrozole alone as a first treatment and It worked for years in many cases. It's too bad she doesn't want to know what caused the liver problem.
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artist, so glad you were able to get an appointment for a second opinion so soon!! Great! And as you said, you will be better prepared now with a list of questions to help you understand and sort out what's going on and the reason for a certain treatment plan. I will be thinking of you - Good Luck!
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Stephanie, I will see Helen Chew at UCD. I've met her once and liked her no nonsense but compassionate manner. Haha Yes, a long break could be in the works for sure! Healing light to you always dear lady! HLB, I guess if my enzymes start to go back up now that I am on this reduced 100 mg dose we will at least have an idea. Hummingbird, that quick appt. when I called was very unexpected. I thought it would be weeks. I'll let you all know how it goes. Take care all!
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My head is spinning. Some ppl might call it shock. Onco called there is no need to come in, he will talk on the phone. Fine.
He tells me, first, that he was discussing the facts of the lastest PET/CT (that a lot of the bone lesions are stable but there are new 2 spots on the liver, and particularly larger lesion in the skul.) with colleague Onco, and they reread the Guardant360 blood biopsy DONE in January, Dani has a mutation in the tumor that is BRCA2 0.2%cfDNA. So I'm like what?? He says she is not BRACA1/2 (she had this test done yrs ago) but the tumor HAS a mutation BRCA2. I would love to understand this in English. I have the report, I don't see amp for this particular genomic alteration on the report. I really don't understand? Could that make sense? He wants to put her on Lynparza(an ovarian cancer drug) with immunotherapy and maybe change to faslodex from letrozole? and stay on Ibrance still. Why change the Letrozole? When I asked he said, he might just leave it.
Did anyone ever hear of such a thing about the Tumor having that mutation.
Still waiting to hear back from the other docs when we have an appointment, but definitely working on 2nd 3rd opinions.Artist you sure got this thing by the horn, good for you.
Thanks in advance,
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momallthetime - sending you peace. i googled a bit. it's not common for the tumor develop a BRCA2 mutation when the person is not. it's not surprising that your oncologist is thinking on his feet a bit. but it is also time to get yourselves to a major cancer center.
it is fortunate that Dani got the Guardant360 biopsy done. even though the results are late in surfacing, it is fortunate that you are getting them now, just as you look for 2nd and 3rd opinions. the genetic analysis allows you to borrow treatments from other types of cancer when there is a common genetic mutation. in general they use this method to find treatments for orphan cancer that don't have as many options as breast cancer. i am guessing they have an ovarian cancer medicine that is effective with the BRCA2 mutation and it could be an effective option for Dani.
the immunotherapy trials for breast cancer are still in phase II i believe but they are having good results. i am very interested in what they propose for Dani as it may be what I will be looking at in 3 years.
as frightening as it this process is, you may be getting to the bottom of what is going on and moving in the right direction.
i am interested in what onc2 and onc3 say. you might want to look for an oncologist who has wrestled with that BRCA2 mutation a few times.
it's good that you are aware that you are in shock. remember to breathe, sleep and eat. and keep going. you are in my thoughts.
>Z<
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Z you've been such a good friend, it will be a pleasure to keep you posted.
I am upset that Onco had this info back in January and he only now got to look into it. It's not a complicated report he should have made the connection. I am still bewildered. As a matter of fact I don't see it on the F1 biopsy done Jan. 2015. So this mutation was not there then? What gives? Good old friend Google says it's for BRCA genes, but here he says it's not the genes, but tumor mutation? How is that different, would you know.
Regarding immunotherapy, yes I heard great things about it, but someone I know working for big Pharma, told me he thinks it did not catch up to breast cancer or prostate (hormonal he said), so….
I am breathing.
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MomAtt- I had to redo my genetic testing in April. ( last one was 2007?) My daughters as well had to retake because there is new testing that gives more on Braca mutations then it did 24 months ago. Not only did I get the testing, but daughters did too and then they sat all 4 of us down in a meeting to discuss. With that being said, the benefit of going to Dana Farber in my situation has dotted every "i" yadda yadda. I don't like when things are missed.
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I am on my 3rd week of first cycle of Ibrance and I have absolutely have no energy this morning. I could hardly make it to driveway to get the paper. Three more days and I am off for a week. I feel like starting today. Anyone else feel fatigue at third week. I had CBC last Friday and white count was 3.4. Thanks!
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Barb call your MO and ask what your neutrophils count was. That is what makes the decision of when to lower the drug. That's a great white cell count going into last week on drug.
Fatigue is SE but it does get better as you adjust.
Carol
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Regarding immunotherapy.... it's my understanding that for a time people did not believe it could work for breast cancer - something about breast cancer not being immunogenic. However, they've discovered this isn't true. I understand there are many trials going on now for immunotherapy with breast cancer, both hormone negative AND positive. I know of one at Stanford for my particular kind of cancer (ER+/PR+/HER2-/Luminal
and the results so far have been very good! My oncologist (also Bay Area) says she believes they are figuring things out with immunotherapy for BC and it *could* be the answer to keeping people in remission for much longer or even a cure! I also have many friends who work at Genentech and they are doing things right now to work on this. So, I wouldn't count out immunotherapy. It's done wonders for other, more dangerous, cancers. And they are discovering it can work for BC too. Keep the faith.0 -
momatt, just want you to know I'm praying for you and Dani that you will finally find some answers and the right treatment. What a roller coaster you have been on. I Pray you find some peace and remember to take care of yourself too. Please keep us all posted, there are many here who care about you and Dani.
Z- thanks for all you do to keep up to date on this, you help us all. I consider you one of our resident authority researchers.
Barb, fatigue is pretty normal the third week, especially in the first cycles. It does get a little better for most of us. I had lots of side effects the first couple of rounds that are somewhat better as my body adjusts to the meds. I also believe, lots of water helps rid your body of the drugs and the toxins and also feel a little better except for the frequent trips to the bathroom.
Faith (in the future)
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Hi ladies, just wanted to check in. I just got back from the onco and went over the results from the latest PET. Everything is mostly stable after 10 cycles of Ibrance 125mg. The only thing we were concerned about is some uptake in the esophagus, which could easily be something benign, but I want it checked out, so referrral to a G.I. I also have the 3 liver mets, 2 went up in SUV and 1 went down. The radiologist labeled them "stable" but we are going to watch them just a bit closer just in case, another PET in 2 months rather than waiting the 4 months we have been doing. I will take stable!! Hope everyone is doing well, going to take the 1st pill on cycle 11, that feels like an accomplishment to me!! Love and hugs to you ladies!
Alissa
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Thank you for the many encouraging words I've already received as my husband and I help my MIL during these first months of diagnosis and treatment.
I have a question and hope to receive some suggestions and advice.
My MIL's docs have asked her to have a brain scan (baseline for diagnosis, mets to lungs and bones already). She absolutely doesn't want to have it. I can't imagine her fear. She's backed out twice and finally went this week and stopped the technicians bc she felt claustrophobic. Any suggestions or experience with such difficulties? She's also convinced herself that she doesn't need the scan, but I was in the doc office of the third opinion oncologist who agreed with the other docs and said she needs the scan. My husband and I want her to have it bc she's been forgetful (could certainly be stress), but she lives alone and four hours away. I want assurance she's safe to drive and live alone. I never want to take away her independence, but we have to advocate for her safety and well being- always top priorities.
Thank you in advance for any tips.
Gracie
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Good news, the docs agreed to a CT scan, which will be faster! And she got approval for Ibrance today. Making approval!
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graciegirl, that's good news about the CT brain scan but in the future if she does need an MRI, there are drugs they can give her, even just a couple of zanax would help a lot, possibly even complete sedation. I understand her fear as I had similar fears with the first one but I was so relieved to get the results that there were no mets to the brain or evidence of dementia that it was worth it. I was especially worried about possible Alzheimer's as my mother died from that. Two zanax and a lot of prayers got me through.
Faith (in the future)0 -
I've had a few brain MRIs (had to undergo brain surgery when I was 27) and most recently had one to make sure my BC hadn't spread. I am claustrophobic so I understand the difficulty in just enduring the scan! What helped me:
1. Have someone in there with you.... my husband sat by my side and held my hand the entire time
2. Request an open air one, if possible (still doesn't feel very open, but it helps)
3. Close your eyes BEFORE they move you into the scanner.... and keep them closed!
4. Take a sedative and request music
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momallthetime, I don't feel like I have a good grip yet, but moving in the right direction. I start 8 weeks of summer vacation today so can catch up on some research and posts on these threads. That is pretty crummy that you are just now getting that info. If the docs could be the patients for a week....Alissa, Stable is great! I too have another scan in just two months. yuch. Gracie, I'm so glad MIL gets a CT. MRI machines are not very fun but eelder has some good advice. Barb, I had such bad fatigue my first three weeks and even into the week off. Mine never really got better in 5 months. I have been lowered to 100mg. WBC of 3.4 is pretty good for this drug....
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Barb - I am in the middle of my 3rd week of my 5th cycle today and I do get pooped. Neutrophils are an issue with palbo (check with your onc) but not for me. My neutrophil count is lovely and I am still pooped. I just have to sit down and stare at a wall for 5 minutes occasionally.
You do have to make sure everything is optimized to keep your energy up when you are on this drug. B vitamins? Adrenals? Whatever you know or can learn about fatigue, make sure you are on top of it.
For me, exercise is the only thing that consistently reduces the fatigue. I have to exercise especially when I have that fatigue. Last thing on earth I want to do, but it works. My theory is that it moves the crud (palbo and its metabolites) through the system and out. I try to do something aerobic, even if only briefly. But simply walking with my daughter to school makes a huge difference. Visualize the crud clearing from your system ...
>Z<
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I second the exercise even when you feel like you can barely move. 10 minutes is huge and lasts into the day. I found if I walked at 2 then I was able to function past dinner time. Usually I am burned out by 5 pm.
Your body will let you know if it's pooped. I would get slower and slower that last week. I felt better when I started back on the next round.
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Thank you everyone for answering my questions regarding Ibrance and fatigue . I have two doses left and then I am on the one pill plan. I was on Faslodex for 18 months and I guess I got used to no SE.'s. I am retired and get to rest whenever I want which isI truly a blessing some days. I live in a retirement community in Florida and try to water walk four times a week. I will be leaving soon to visit my family for 6 weeks. I love reading all your post. Wishing you all a good summer. Barb
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Barb - walking 4 times a week is fantastic for managing the side effects of this treatment, as is visiting your family. Have a great summer.
>Z<
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Guys, for the first time since Dani started Ibrance her PTS is like 375 for her it's high. If anything it was low for the past 5 cycles, sometimes as low as 20. How could it have changed so much. She is on Herceptin since Apr and Tykerb and Letrozole, it's that weird or what.
Still waiting for answers when to come in for new consultation. Meanwhile I asked this Onco to show the scans to a Rad Onco to see what he says about Rads to the budding lesion in the skull, and to the liver.
eelder thx for the info on immuno. She got approval for it already! Current onco is surprised, it took about 5 wks. The thing is I am not sure if we should start now that we wanna hear other opinions. And so far we did not tell him that we are looking elsewhere for opinion, so it's prob gonna b ackward. How do I tell him?
The truth is what he is suggesting is making sense, a lot of the info I found here in this site. There is much too think about.
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momallthetime - can you post the trial she was accepted to? i am very interested in looking at it. congratulations.
i am not sure there is any reason not to go forward with the trial. you can pull out any time if the other oncs tell you it is not a good idea. this, in fact, happened to me. I started enrolling in the ribociclib trial at the suggestion of one onc. I was also getting second and third opinions. i decided to pull out of that trial and go on ibrance after talking to the other oncs.
there is NOTHING awkward about getting second and third opinions. dani's current onc is good, it's just getting so complicated that you need a couple more perspectives.
>Z<
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Yes, please post the trial she got into. And if anyone hears of any other kinds of trials, PLEASE let us all know. I'm hoping ibrance works for me for a long time, but I still want to know these trials exist. I want to be able to follow them. I believe in my heart immunotherapy could be the ticket!!! My onc does too! Sending love.
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