Ibrance (Palbociclib)
Comments
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I just heard back from MO- He thinks that the last 8 days of waves of stomach cramps and loose ugly yellow stools are from the Ibrance. I had no SE the first cycle. This started 5 days after I started the second cycle.
Did anyone else have this type of SE? No nausea
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Hi Fellow Ibrancelanders,
I too have been reading, but not posting much lately. I'm encouraged by the many good results reported here.
For the past month I have been dealing with a severe new pain in my left hip. (All my mets are in the bone.). After 2 nights in the hospital and getting the pain somewhat under control, I started the 12 radiation treatments. I had number 7 today. Next Monday I get a PET scan to see if this is new progression or old mets getting angry. I then have a follow up MRI on the 21st. Then we'll see if I move to a new treatment or continent on Ibrance.
I'm on my break after round 7 and my TMs dropped the first few months and have been steady (slightly higher) the past 2 months. We'll see.
Hope everyone is having some holiday fun in their lives.
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LOvesMaltese,
I haven't had stomach cramps but I have great discomfort that makes lying down difficult, have to sleep sitting up. My doc thinks it is GERD, that has irritated my esophogus (I also have a hiatal hernia which it may be interacting with). I have started taking Pepcid AC (one of the few antacids that don't interfere with Ibrance's effectiveness). I have loose stools, but I wouldn't describe them as "ugly". All stomach issues stopped during my second week off. I am going to a lower dose on the next, my 5th, cycle to see if that helps, but with only one week off.
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Hawksfansara - Have you been having the vomiting since you started Ibrance, or did it just begin on this cycle?
Artist - Have they talked about possibly lowering you to lower or lowest dose and see how that goes?
Hi Shetland - Glad so see you here!
Kaption - Hi! Sorry to hear that you've been in the hospital. Good luck on the rads and wishing you well on your PET.
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Moissy, I think she is going to put me on Fazlodex and Ibrance. She thinks it is the Letrozole that is causing the problem because the enzymes did not really go down on an Ibrance break. I just read about someone who changed to the brand name Femara and quite having her particular problem so wonder if fillers could be mine? Anyway, the enzymes AST and ALT went down about 150 points each this week, not nearly as fast as they went up. She wants to wait one more week to test again. So no TX for me right now which has me VERY anxious. Nice to hear from you Shetland and Kaption! Hope the hip pain is just the old Kaption....Loves, I had some loose stool issues, OK let's just be honest, I had a couple of bouts of major diarrhea on the Ibrance! But it was usually when I over did dinner or ate a lot of meat or something out of the ordinary. Wasn't a huge issue. On that note, Ha[ppy Holidays all, get out and have some fun!
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Loves, I have not had any diarrhea but it must be a common side effect. My onc asks me about this every single visit and is very surprised when I say no
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Wow, Artist, I understand your nervousness at being without treatment. All I can think of is to be diligent about exercising, since that is supposed to lower harmful estrogen. And eat your broccoli etc etc. You know all that.
LovesMaltese and Nina, I have noticed my tummy can be a little touchy on Ibrance. Sometimes I go on the BRAT diet, especially the fist few days of s cycle, and that helps. But yours sounds more severe.
Kaption, is it possible your hip pain is from mets dying? Is that what you mean by them getting angry?
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Hi everyone, I am here because my mom was just dx in Oct with stage 4 BC with bone mets all over. She started Ibrance Oct 31st. She has lost a lot of weight in a very short period. Its hard for her to eat anything at all. She says nothing tastes right and she has no appetite. Battling nausea and diarrhea but not vomiting. She had a lot of pain in her pelvis and could barely walk because of it, just finished 10 radiation treatments. Her pain seems to have decreased a little so far. We go to the doctor tomorrow,
Does anyone else have this taste problem? I think if she could taste things she would eat. But she cant keep going at this rate.
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Welcome,Chap - I'm sorry your mom is having to deal with this. There are a lot of good resources on this site. When I was initially diagnosed with Stage 4, I did lose my appetite and feel nauseous for a few weeks. I simply did not feel like eating. In my case it was primarily due to shock and worry. I started to lose weight, but started drinking some protein drinks -- Boost Breeze, Ensure, etc. They come in milk and fruit flavors and your mom can at least keep some calorie intake that way. I prefered the fruit drinks---watered some of them down due to sweetness. It will depend on her preferences, but I found a box of peach flavored fruit Breeze watered down a little over some ice to be a great way to keep myself going until I got my bearings with treatment, etc. It takes a while to get used to the idea of Stage 4, but if you look around on the board, there are several topics that can help you and your mom as you navigate your path. It definitely gets easier. I hope you have a good appt with your doc tomorrow and that the rads help alleviate her pain. Let us know how things go.
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Shetland, the docs aren't sure until the scans are done if this is old or new cancer. There has always been lesions in that area, but never pain.
As far as intestinal issues. After 7 rounds it's pretty consistent that I'm constipated during the weeks on Ibrance and have very loose stools on the week off. I can usually help the constipation with stool softener or just eating extra fiber- like raisins.
Chap2, I'm sorry to hear about your mom. I don't have appetite problems on Ibrance, but I do on pain med and/or radiation. Maybe it will improve after rads are done. Hoping for you both!!
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The stomach cramps are hardly noticeable today so I hope I am on the mend! Thanks for all the help, I hope everyone has a great day.
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Chap, I agree with Moissy that initial diagnoses made me lose a ton of weight, probably 15 to 20 pounds. The anxiety and fear just shut my stomach DOWN for awhile. All of my clothes are too big. Then as I "got used to" my situation I went on a total "clean up my diet" campaign. Although I ate fairly well before, I cut out all sugar, most meat, salt and bad fats. So lost some weight because of that too. I have stabilized a lot but still have to conscientiously decide to eat enough. We need it to keep up the energy!
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One of my doctors or nurses reminded me to get enough protein to heal.
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Chap2,
Initially on the first several rounds of ibrance I had SE's until my dosage was dropped to 75mg. For me, Greek yogurt was easy to digest and helped with diarrhea.
Hugs,
My tumors came back lower again, they have been consistently dropping on this protocol and I am very happy with this combination as I experience very little SE's. I do have strong energy drops at times but little else. My only concern is the blood clots, hopefully they are dissolving and I will not have to do the Lovenox injections forever. I have a technicolor tummy with tiny spots, very attractive.0 -
Saw my MO today, plus had my latest CBC. My neutrophil count was 1,750 after 14 days on the 75 mg dose. This is a HUGE improvment. Count was 880 on the 100 mg dose. So I am very grateful.
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I also am taking Pablo and Faslodex. My ANC drops below 1 even at the 75 dose. My onc at Sloan has been playing with the dose. I am currently taking 100mg, two days off in between doses. Anyone else trying to creative dosing? I also get Nupigen when my anc drops below 1
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Hi ladies,
So I just came back from my monthly appt with my MO. Bloodwork came back pretty good. I am now getting blood work every two weeks since I tanked on the 125mg. Just finished cycle 6 and I have only had to deal with nagging joint pain and menopausal symptoms. I am scheduled for a PET/CT on January 4th. From the results of the scan, the will discuss moving forward with breast surgery. I honestly thought surgery was off the table and pointless since I was metastatic to the liver... Am I off base with my line of thinking? I also gained 7 pounds since last month... So I am going to pray that was due to my overindulging during Thanksgiving. Hope all of you all are well and in great spirits.
Monika
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Monika, That is interesting to me since I was also told that surgery is off the table since I have mets to liver.....But I am also ILC. I always wonder isn't it better to iradicate any tumors you can so they don't continue to spill more bad cells into your bloodstream? I hope you will Let us know when you know more info. Best wishes with the scans! To me keeping weight on is a good thing!
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Monika and Artist, I asked about breast surgery for about four visits in a row when I was first diagnosed stage iv. Finally, my doctor told me that she has seen it too many times where someone is doing well until they have some kind of surgery. She said surgery seems to trigger metastasis-promoting changes in the body. Of course this was her answer to me in my particular situation. I think this is one of those areas where there is no definitive answer that applies to everyone, and the art of medicine comes in. As it turned out, the breast tumor could not be detected any more after taxol had done its job. My onc thinks the breast tumor was mets and not a new primary.
I would like to report that I have been on Ibrance + letrozole for over eight months now, and this week's scan shows that the gains made by taxol have held and I continue NEAD. So ending this year on a glad note.
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such great news Shetlandpony!! The success stories are good for us all. You are just a month ahead of me.
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I just wanted to say thank you for starting this thread. I'm a newbie and don't have the battle scars many of you have but I was diagnosed with stage IV (liver mets) from the get go so this will be my first course of treatment. I just got off the phone with the pharmacy and my Ibrance/Letrozole will be here Tuesday. I'm hoping the side effects aren't too difficult as we are coming up on the holidays and my four children will be out of school. The younger two don't understand and the older two know enough to be scared. Thank you for all the great information. Prayers to all of you!
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Welcome Auburngirl. It is a great place to come for support and questions...and hope! I hope your holidays are lovely.0
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Auburngirl, So sorry about your recent dx, I'm sure your head is still spinning. There is a lot to learn and for most of us, a kind of grieving period after learning we have mbc. This is a great place for both information and support, so please pop in with questions or/and emotions whenever you need to. More and more, this is being treated as a chronic illness, so don't believe the statistics you may read. They go back 20 years before many of the current tx's were available. Hope you have great results and minimal se's on this 1st tx.
Shetland, Two thumbs up for your great results!
Monika and Artist, The subject of whether or not to remove the primary after mets are found seems to come up over and over. Wish we had a definitive answer. I was po'd after undergoing lumpectomy and snb to find out I had bone mets all along and could have skipped the surgery, but that's just me.
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I knew I had bone mets and still had the surgery. After chemo, the bone met was sclerotic, but the primary, although much smaller, was still there. So, out it went...and I am happy for that. I was totally NED for 3 1/2 years after that.Totally worth it for me.
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Stefajoy, you raise a question I have had. I also have only bones mets (all over). Can bone mets people be NED? Can there be no lesions present
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- kaption, at the time of my original Dx, only one bone met was found on my ascitabulum... but was enuf to make me stage 4. That one bone met disappeared after chemo, and I had surgery to romove the remaining breast and lymph cancer cells. My follow up PET showed no uptake at all, thus rendering me completely NED. Three years later I did have two more bone mets pop up, which are currently stable. So, I guess ifthe mets are oligo, it's possible to be NED.
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thanks, Stephajoy.
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Thanks for clarifying Shetland, that does make sense. Welcome Auburngirl, this is a great place for support and info. And jobur is right, give yourself time to process and grieve as needed. It does get easier in time. Also very true jobur, if it not going to help me a lot why go through it?
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Gee, after I made my first post, I lost you all. I have a couple of questions. Is there a way to find my posts, like click on my sign in name? and how do you add your picture? I have been reading posts and researching IBRANCE.
Tonight I take my last capsule of the first cycle, Monday, labs and Tuesday Faslodex last 2 loading doses, Xgeva in tummy and MO visit
This last week San Antonio hosted breast cancer symposium from all over the world, anxious to see if he found anything new. Do any of you have mutations? I do, but MO didn't tell me which ones I have.
I read in some info from this symposium on line this week that many EP+ patients have either D538G, Y537S, either 1 or both mutations. Those that have D538G respond to anti estrogen meds better. More research needed, I feel like the next 2 years are going to bring us many new options!
Now back to IBRANCE , I have felt extremely well, had brief spells of mild nausea, no diarrhea, decreased appetite ( yea) labs weekly, all lower, however not low enough to act on. Suspect Monday's to be the lowest as tonight I take # 21.
The only thing that is a problem for me is..my allergies were bothering me for months and Zyrtec had almost become a routine med. My eyes have itched so much, more the last 2 weeks, I admit I have rubbed them, last Mon. I was outside and something blew into my left eye. I washed the eye a few times with eye wash but Tuesday morning it was tearing a lot, the upper eyelid was red and swollen and pus was there. Saw my Opthamologist. She checked me all out and prescribed an antibiotic ointment 2 x a day, this is Sunday and it still is not well. Not pink eye, it is just the eyelid. Anyone else with this? Just want to be sure it's not IBRANCE related.
Have a great day,
Donna in Missouri
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Donna, to find your previous posts, click on Search (to the left), then type your screen i.d. in "Search by member name" to bring up your recent posts.
As far as mutations... one of my mbc friends who was at the San Antonio conference shared this a few days ago... "Sat through a very good session on CDK inhibitors today in San Antonio. Key takeaway for me was that of you have a MYC mutation, CDK 4/6 inhibitors may fail you. Which explains a lot about why I progressed on Ibrance." This is really important information for those of us on Ibrance!
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