Ibrance (Palbociclib)
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Lynn Thanks for the chuckle. I had to grab the dictionary. "didiatic"? lol. But what you're sayin makes good sense. And I will follow your advice. and it's much appreciated.
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Whenever one of my oncology patients has a scan at an unaffiliated facility, said facility is asked to send images to us which normally takes up to a week. It probably is a good idea to get a copy for your own records, but the responsibility should be on the institution to obtain any needed information and not the patient.
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Ladies: My husband and I have been on the ketogenic diet for 3 weeks. We love the diet - weight loss, energy, etc. I was concerned about the effects of the diet to my MBC. I had called the oncologist last week and he said it was OK to stay on the program. I had my regular appointment today - my tumor marker (CA27-29) was down 20% from last month. (Will get my other lab numbers on Friday). I may be doing the Ibrance/Keto Dance (not sure if there is any such thing). Not sure if this combo is valuable long term but right now I'm thrilled. Also get Faslodex shots every 4 weeks and Xgeva every three months. Thanks for your support.
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Hi NettaGr, I haven't posted lately too, but i was reading often. Strange, the same happened to me this fall, i had bacterial infection and they gave me the same two medications and after that diarrhea for two months. i think eating yogurt helped me. I hope you'll get better soon.
Prayers and love Elena
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@Blueshine: good to hear that you are finally feeling better. I am currently taking Metronidazol against the Clostridia (hoping that they are what we think they are) and Probiotics, the latter with 2-3 h delay after the AB. It's getting difficult to fit in all the meds, I was just thinking today whether I should get myself an app for that. Hopefully, that will do the trick.
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Leigh68, I'm sorry that I wasn't clear. The scanning facility does send the results to my onc. The copy I request is for my own files rather than for my onc's office. He has his own files and copies, though I expect he is using digital rather than CD copies.
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Tanya - I have been on the 75 mg since July of 2015 - the reduction in dose will give you more energy and will be just as effective. Just recently came across this site and wanted to add my support. I wish everyone the best on their Ibrance journey - I know we are all trying to ride the wave for as long as we can - Thanks to all for allowing me to join your posts -
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Welcome here SouthJersey! We’re really glad to have you here with us. So you’ve been on Ibrance for 3.5 years?? That’s awesome! Tell us a bit more about yourself... where are your mets? Is this your first line treatment
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Actually started Ibrance in April 2015 at 125 mg, then dropped to the 100's and ended with the 75's in July of 2015. This March will be 4 years. Mets are from my head to my toes - a complete set. So far this has been my first line and only treatment, except for the radiation. Did Xgeva injections up until March of 2018. Thank you for the welcome.
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thanks for sharing! You are a huge inspiration for so many of us! I’m almost a year into this
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SouthJersey, good morning, and welcome! And wow...what a great run! I may have missed this: are your mets all in the bone? Has there ever been any sign of even minor progression in the bone over your [fabulous] four years? Thanks!
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Hi So Jersey
You are such an inspiration! I'm just now 3mos into Ful/Ib and we're doing scans to see if this is working for me. I'm sure you'll be a source of info to everyone on this board.
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Hi, South Jersey - you're a fellow Jersey girl! I'm in Edison, and I go to Sloan-Kettering in Basking Ridge (for my doc) and Middletown (for my treatment). I was diagnosed in April 2017, de novo, with one bone met, and started Ibrance 100mg that August.
Always glad to hear from someone who's been successful long-term!
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hi south jersey!
Could you please share the how and why you stopped the Xygeva? It would be awesome to be on less medications! Thanks!!
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Hi beautiful ladies! I’m 2 weeks in on ibrance so switching over to this group from doxil group. First off my wbc dropped to 1000 just from 14 days of ibrance. So they are already talking about lowering it. Is that normal? Lol as if that should even be a goal? Anyway I was hoping to get more mileage before having to decrease dosage because I can already tell it’s working! Secondly I have had swelling in my legs, more on right side. Anyone have swelling from ibrance? I’m also on faslodex and lupron. The swelling actually started during radiation to skull but radiation oncologist says it wouldn’t be from that. Oncologist doesn’t seem to have any answers for the swelling, he sent me to lymphedema specialist. I’m having a pump demo in my home today, hoping that works out, anybody used a pump and gotten relief?0 -
Chef, it is pretty common to have to lower the dose of Ibrance. I'd guess half the people here are on less than 125 mg. Not a problem. I've been on 75 mg since cycle two (of 33) and am doing fine. Some doctors start people on 100 mg.
There are so many things that could be causing your swelling. Surgery, chemo, radiation (all doctors say that what they are doing is not causing your side effect), Ibrance, etc. And lymphedema can show up years after any of them. The one thing my MO asks me every time I see her is, "do you have swelling in your legs?" MO's know nothing about lymphedema. I tried to ask a former MO about mine and he said, "I don't have anything to do with that." I've never used a pump. I wear a compression arm sleeve on my left arm (cancer side). That swelled up after a plane trip to my son's wedding which I had been talking about to them for months. No one said BOO about it. My lymphedema specialist said I should have been wearing a compression sleeve for that trip. Oh, but I digress. I was just afraid you wouldn't get any responses over the weekend. Sometimes, people get quiet on weekends. Now, they'll be here. Just wait.
Welcome.
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The dreaded progression news came today. My TMs have climbed the last two months after bouncing around. I am on cycle 19 of Palbo and Faslodex. It is still bone only per PET, recurrence of some old areas and a few new areas.
My MOs first choice was AA- which although I expected her to say that based on what many people here said- I just said no. I wondered why Aromasin an Aromatase Inhibitor would work in someone who Arimidex failed in. She said that it is different and sometimes getting away from an AI for awhile makes the cancer sensitive to it again. She said that Affinitor causes an average of 7 months PFS and not everyone has side effects to it.
She was in no way amenable to changing CDK4/6 inhibitors or changing to Tamoxifen with Palbo. She didn't think a decalcified bone Foundation 1 test was useful. A lot of the things we read about are not even close to prime time per her. (liquid biopsies, immunotherapy, etc) She didn't think a second opinion for a possible trial was going to be productive (although my choice to do it) due to no organ involvement and difficulty assessing response.
We left it with me trying to decide between 3 choices along with continuing the Zometa. Aromacin alone . Tamoxifen alone. or Xeloda alone. She said Xeloda works in about 30-40% of people with bone only disease. In any order that I wanted. Her slight bias was toward the Xeloda.
Any thoughts to help me with this. sad and worried and not wanting to tell the kids.
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I'm starting to be a breastcancer..org junkie. I feel so safe here. I've read this entire thread more than once. Anyway, Seaway, I was just reading your info on using medical cannabis. A couple of months ago, my Onc Nurse Prac. told me she wished they'd put Marijuana on a class two drug trier. She said they're been a couple of studies coming out of Europe which shows great promise. She says it's working, She said it doesn't work fast but it does work. I just wanted to put this out there.
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Hey Chef - welcokenover here! As Jaycee rightly said, it seems we are all split up evenly among the doses and some studies have shown lower levels to be as effective and in one study it was more effective. So most is us go with what we can tolerate. Unfortunately I don’t have any insights on leg swelling.
Hi Nkb - I’m so sad to read about your progression. Sounds like you and your onc don’t see eye to eye. Seems like your best path is a second opinion. A/A appears to be the most common next step for many of us here. But some go the Xeloda route, for sure. Good luck. I’ll be praying for you and especially your kids.
Love to all.
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Nkb....After three and half years on various hormonals and useless Afinitor i happen to really enjoy being on xeloda.
I've been on it for seven months with no progression and no hand and foot problems. Just fatigue at times.
I enjoy the week off and this past month my activities have greatly increased and I'm starting to feel like my old self again.
You know...that self we all have to give up when we start taking the hormonals....I truly hope to be one of those women that benefits for many years from this drug, and that you benefit from it as well if you opt to start talking it.
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Chef, I started at 125mg, then was reduced to 100 mg on 2nd cycle. Now on cycle 27, doing fine.
Nkb, my MO said Faslodex/Ibrance (not Fas/Verzenio would be next for me after a I/L progression, then AA.
But I want Xeloda after Faslodex. Just not sure if I can go on AA after Xeloda..need to ask MO. Maybe by then the Alpelisib will be a choice rather than Afinitor, especially if I have the PK3 mutation.
In any case, I hate the randomness of which drug to use..just hate the "trial and error" of our disease. Did I say hate twice..yes, I did.
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Nkb, Like for SandiBeach, my oncologist suggests moving to Ibrance-Faslodex and then AA, and she says she has had several patients do very well on AA. Afinitor is in the same general pathway as Alpelisib, tho I think the PFS numbers are better for Alpelisib but its not yet available except thru trial, and esp. I don't think you can get into the trial with bone-only mets.
But we also need a shot at immunotherapy, sooner rather than later, so when does that option ever come?!, A couple of women here are in immuno-combo trials that include ER-positive tumors, so it could be worth asking in second opinions about when to go in that direction.
Xeloda also has many afficionados here, tho obviously it is chemo.
It's an agonizing choice when the firstline is so clear, yet the secondline is so vague and arbitrary.
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I started out with 125 mg and then had it reduced to 100mg. I’ve been on ibrance faslodex for 19 months. It will be reduced to 75mg. I’m looking forward to more energy Jersey girl. PatMCG also was in 75 for a long while.
Jaycee thanks for sharing your 75mg for 33 months story.
I had to beg to have mine reduced for 3 months and was surprised when my Onc brought it up Tuesday and said let’s try it. Whew I sure can use a break from the fatigue and SEs at the end of the third week on. My blood count (wbc) was also low the last couple of reads and I had to have nupagen.
NKB sorry to hear about your progression. Lots of treatment choices on here over the past 20 months for sure. A lot of support, encouragement and wisdom too.
Tanya
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Chef, adding my voice in welcome. I lasted a year at 125mg Ibrance, reduced to 100mg about 6 months ago, and am considering going to 75mg, depending on a couple of SE issues I've got going on. Good luck with your treatment.
Nkb, I'm so sorry to hear about your progression and the tough decision you have to make on the next line. I like everyone's suggestions. But if you like and trust your MO, get her to answer your every question. Then develop a plan that both of you are comfortable with and move forward. There is no wrong answer.
Joyner, hoping you're getting the answers you need to get back onto treatment.
Pat, sending prayers to you and your family.
Miao, yours is a welcome post. So glad you're doing well on this treatment.
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Thank you for all your suggestions. It does feel like an agonizing decision that is rather random and cookbooky. My MO said that the immunotherapy is not even working well for TN breast cancer much less ER+. I tried bringing up a possible combo of any of the CDK 4/6 with Faslodex or Tamoxifen (didn't think of an AI if her contention that Aromasin is different) that maybe it wasn't the Palbo that failed- or maybe decreasing the Palbo to 75 mg and seeing if I wouldn't need a two week break most months,and it would work better. She was quite adamant- no more CDK drugs for me.
Miaomix- no hormonals does sound tantalizing.
SandiBeach57- I was already on Faslodex with the Ibrance since Arimidex alone failed after 4 years.
I like my MO and I think she is wanting to give me something that is approved and could possibly work for 6 months or more. I think you are right that the second line options are a crapshoot.
Am I wrong to refuse the Affinitor?
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nkb. I'm in my third week of AA. I wish I would have been adamant about not wanting to take. It's happening so fast, the onset of SE and no appetite which gives me no energy. It's worse than I thought. Progression is a bummer for sure. Sorry you're having to make these difficult decisions.
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Nkb,
Wow do I feel you about all of it....telling the kids is on my mind a lot... I have 4 grown and gone girls and want to tell them the same thing so one tells me... mom.. you never told me that! I decided to call everyone individually and then send a group email so they can reread, think about questions and everyone gets the same info and can think about questions if they want to talk more. It worked for me.. but was still difficult and so hard for me to be honest with them, I want to sugar coat everything to protect them, but that doesn't give them time to process either.
I wanted to share that I went from tamoxifen after I had lung mets, they put me on aromasin and it pushed everything into remission for 8 years. Basically, it is a crap shoot.... wishing for clarity for you and others here.
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My Onc told me that my next therapy after Ibrance/Letrozole fails will likely be Faslodex/Kisquali.
I’m hoping to save Xeloda for liver Mets, if that happens for me, as I’ve seen such good responses for so many.
NKB- I’m not sure how Tamoxifin factors in, but in the vain of resensitizing the impact of hormonals, that might be my preference over AA or Xeloda. That said, I believe this was the path Lynne (50sgirl) took and the Tamoxifan didn’t beat back her cancer so she loved on to Xeloda. Forgive me Lynne if I have that wrong. I’m hoping to delay chemo as long as possible
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French horn thanks for that story. Something for the back pocket. An 8 year run is amazing encouragement. I like the email to the kids. They all talk about what we say behind our backs. That’s a good solution to misunderstanding and miscommunication.
Have a good weekend
Tanya
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Chef, just wanted to join the chorus - I started out on 100mg Ibrance Aug 1, 2017, so am now on Cycle 20 (and have had no active disease since January 2018 scan!). My oncologist at Sloan-Kettering starts all of her patients on the 100mg dose, then raises or lowers it if needed.
I understand being prepared for progression, but my plan is very Scarler O'Hara-esque... I'll think about it tomorrow. Seriously, I read and soak up all the info on here, but I know myself, and when the time comes, I'll let my onc decide. At least I'll be prepared for what will happen on whatever drug she chooses, thanks to this group!
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