Faslodex + Pablociclib(Ibrance) treatment combination -
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Welcome Science girl - my worst times were round 1 and start of 2, I am now stable and working full time on round 3, starting 4 on Thursday. I drive an hour+ each way on the lovely 405 freeway (nicknamed the "4 or 5" for how many hours it takes to go anywhere in LA). Everyone is different, but most ladies seem to stabilize soon if ibrance/fas is working, or alternatively if not. I'll know more after my PET in April. I want to reduce to #100 since I am working full time, but onc wants me at #125 since my WBC is not low, despite RBC transfusion. Go figure. Please see what your CBC says and go from there. Rpoole - you rock, glad you are doing well on letrozole + fas+ ibrance. I am on a 4 pack combo here. My darling twin naturegirl - we started nearly the same time with similar issues, I have left lung and entire sternum glowing on PET - which is why I have lung drains every 3 weeks or so. Fas should kill pleural effusions by round 4 or 5, that is my plan. I was diagnosed stage 4 at Xmas after going to Urgent Care coughing non-stop, thinking it was the worst flu ever, and then sent to ER where left lung was drained and surprise(!) ER+/PR+/HER- BC cells seen in 15% of pleural fluid. Then saw UCLA onc first of Jan who started me on fas+ibrance and added Xgeva as bonus for round 2. I have lost hair, nails and 5 pounds on Ibrance. But not my sense of humor or love for you ladies.
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lalady, my darling twin,:) wow, hope Faslodex does the job in dealing with pleural fluid soon for you. My oncol. has lowered my dosage of Ibrance from 125 mg to 75 mg. I was surprised as I thought he would step it down to 100. My cat scans are scheduled for April 4th. I'm on my week off of Ibrance and will see if I can resume Ibrance at his lower dosage recommendation on April 7th. Hoping this combo has helped in stopping progression. I'll soon find out. Hope your PET results are great lalady!
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An added note - my oncol. mentioned he would lower my dosage of Ibrance when I saw him a month ago, but didn't do it then as I already had the third month Ibrance prescription in hand. His thinking is, it would be better to have more consistency of Ibrance, i.e., staying off one week versus the two weeks I have stayed off after 1st and 2nd cycle. I'm suspecting I will have to stay off Ibrance for two weeks on 3rd cycle I ended and will find that out when I see my oncol. on April 6th. At that time, he will also go over results of cat scans (chest, abdomen and pelvis) that I will be taking on April 4th. Has anyone had a reduction to 75 mg of Ibrance? If so, what have your results been thus far? I just want to tell everyone I'm so thankful for everyone here.
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naturegrl, I asked my UCLA onc that question a couple of months ago because it had come up on the Ibrance thread, and she was involved with the trials, so has had some patients on Ibrance now for 6 years. In fact, Dr. Slamon @ UCLA was one of the researchers who developed Palbocciclib, as well as Herceptin. So, for what it's worth, she said it's better to stay on the higher dose. Of course, only your onc knows you -- she doesn't and I don't. Plus, since Ibrance is so new, new info' may be evolving as more women are using it, and it does seem like some are doing very well on lower doses. But I just wanted to add this information here because what your onc is suggesting for you is contrary to what I was told, and may not be right for everyone.
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Dear twin Naturegirl, my onc Dr. John Glasby serves as co-chair of UCLA's division with Dr. Dennis Slamon. These guys rock. My onc prefers patients on the highest dose they can tolerate, unless WBC crash, etc. He only doses #125 or #100. I'm not aware of studies for ladies on #75, but your onc know you best. I want you as my "partner" for round 4 at what ever dose is best.
Are you coughing or having any sternum pain? Deanna - not sure if you are referring to Slamon as a she - or is your onc someone else there? Pam are you feeling better this week - when do you restart Ibrance?0 -
Thanks Deanna for your input. I would think it is better too, to stay on the higher dose as well, as it would make good sense to me. But, from what my oncol. mentioned last month, he would want me on the Ibrance dosage regularly, protocol, which is three weeks on and one week off (for the newbies) rather than what is happening to me, and that is, three weeks on, TWO weeks off because of low white blood cell counts. Probably having the consistency he thinks is better. But what gets me is why the reduction from 125 mg to 75 mg rather than 125 mg to 100? And of course I won't see him again until April 6th to go over this burning question. I would love to hear input from others concerning being lowered to 75 mg of Ibrance along with taking Faslodex and what their results have been.
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hi lalady, we must have been typing at the same time so I missed your post. Interesting that your oncol. writes scripts for 100 & 125 mg. of Ibrance only. And you know I will stay as your 'partner' for round four! LOL I'll be a little behind you though. I'm always clearing my throat, some coughing but nothing that would let me know something is wrong there. No sternum pain, thankfully either. Boy, do I know what that sternum pain feels like, yikes.
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For what it's worth, my counts aren't rebounding much and I've been off Ibrance for close to two weeks so my Onc has ordered a reduction to 100 mg. She will not start me on this dosage until my counts improve significantly. My DH is a physician and it's his opinion Ibrance may not be worth the risks for me. He said thinning hair and Diminished appetite are minor compared to my bone marrow's inability to fight off bacteria or viruses. So it looks like this may be my last chance.
I wonder what my next options are.
Amy
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lalady, I see (and adore!) Sara Hurvitz, who also works closely with Dr. Slamon, which is why I mentioned him. We are both so fortunate to be treated at UCLA!
naturegrl, here are a couple of charts that advise when to reduce the dose. I also have to wait a few days extra each month for my granulocytes to rebound, but Sara has always reassured me it's fine (for me and my numbers).
https://www.pfizerpro.com/product/ibrance/hcp/dosi...
http://reference.medscape.com/drug/ibrance-palboci...
There's also a really good chart somewhere that goes into the various grades of neutropenia. I'm not finding it quickly, but it was once linked on the Ibrance thread, so you or someone else might be able to find it there. Otherwise, I'll look for it later if I have time.
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Amy, we were posting at the same time. So sorry you're struggling w/Ibrance. As someone said earlier today either here or on another thread, it just seems like women either do well with it right away, or they don't. And bone marrow failure or damage is very scary! But if your TMs and scans are good, perhaps you can just stay on Faslodex without the addition of Ibrance. From what I understand, women have done well on it by itself for many years, way before the introduction of Ibrance.
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Thank you all for posting your experiences, it's very helpful!
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I am more of a lurker, but I just wanted to share the Ibrance/Faslodex has gotten my mom stable. She is doing pretty good on the full dosage...WBC and RBC counts are rebounding. Thank you for this thread. Like ScienceGirl said, this is very helpful!
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ScienceGirl, I just wanted to say how sorry I am about your re-dx. I saw a post from you on another thread yesterday... recognized your screen i.d. and avatar from 2010... and my heart sank when I saw that you'd recurred -- which I hadn't seen until yesterday -- especially after an original Stage I dx. I'm so sorry, but hopefully you're doing well. We are very fortunate to have a new drug like Ibrance available to us! I hope it's good to you if you are or will be on it soon.
And great news about your Mom, cafelovr! How long has she been on Faslodex+Ibrance?
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After reading what Deanna and lalady said, I put in a call to my oncol. this afternoon to go over why he is reducing my Ibrance to 75 mg. rather than 100 mg. He said he wants me to have Ibrance more consistently, 3 weeks Ibrance and off one week, rather than what has been happening with me; 3 weeks Ibrance and off for two weeks due to low white blood cell counts. He said the jury is still out as to whether or not 100mg would raise the WBC to where he wants to see it so he's going with the 75 mg. He said he can always up it to 100 mg if he sees I'm doing fine on the 75 mg. He said he is sticking to that. So I must go with what he says as he is my oncol. and hopefully knows what is best for me.
Oh, one more thing. At the end of Dec. 2015, my oncol. gave me a handout of Palbociclib for me to read to get prepared before going on it Jan. 2016. It said and I quote' the amount of palbociclib that you will receive depends on many factors, including your height and weight, your general health or other health problems, and the type of cancer or condition being treated. Your doctor will determine your exact dosage and schedule'. This is taken from a handout from my oncol. from Chemocare.com - Palbociclib.
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hi all, I have finally licked my cold. Normal chest xray, negative flu test. Just a nasty cold I couldn't fight because I had no neutrophils.
Blood draw last night showed neutrophils in the "almost normal" range, so I'm starting cycle 2, full dose, tonight.
I was sailing through [well -- needed Zantac] until the cold hit. That flattened me so I have no idea if I really had fatigue, etc. One mouth sore for three days this week. Definite appetite suppressant. Today I'm hungry for the first time in weeks.
I've got antiseptic wipes for the upcoming airplane rides and Purell for the rest. I've never been someone who obsessed about germs but this time I'll pay attention.
Naturegirl, I know zilch about dose reductions -- I hope it works out. No reason you couldn't increase the dose if the lower one works.
Linda, I remember your Mom. I'm glad she's doing well -- hope you are too.
What do you guys do when the Faslodex and Ibrance get out of phase?
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naturegirl, it's so important to trust our oncs, and as I said above, no one here really knows your complete hx and situation as well as he does.
pajim, I get a little out of sync each month due to waiting a few days beyond Day 28. Then when I got really sick in December, I waited something like 16 days to restart Ibrance. So I'm often out of sync, and all I do is write Day 1, Day 21 and Day 28 on my calendar, and I trust my previous experience w/counts rebounding 4 or 5 days after Day 28, as I was taught to do. I suppose if I was really off -- like ended up getting labs early in my Ibrance cycle -- or if I suspected my counts were really low, I might ask that month to have them done again on Day 28 -- just to be sure my pattern hasn't changed significantly.
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I posted this question awhile back but am wondering if there are any newbies that have had the situation of elevated liver enzymes on Ibrance? And if so did your Onc lower the dose and the enzymes lowered? I am hoping to still have Ibrance to return to some day at perhaps a lowered dose. My Onc seems very black and white about Tx and don't know if she will consider that. But she did say I could return to Femara one day so hope to couple it up with Ibrance again because it did help my scans and TM's.
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I have been NED since May 2010. Thank God for Herceptin.
My mom however has been on a roller coaster. After she failed Arimidex and Aromasin, she went on this treatment plan. It's got her as close to stable as she's ever been. It looks like the tumor on her liver is healing and one of the tumors on her lung is healing, and one is stable, as well as her bones. She's on her 3rd Rx of it. Her counts are leveling off, but her alkaline phosphatase is still high.
I don't know about you ladies, but I'm ready for a cure!
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Cafelovr, ME TOO!
All in all the news about your mother is good. Let's hope it stays that way for a long time.
Artistatheart, I don't think my liver enzymes have registered a change whatsoever. I'll go back and double-check but I think Ibrance has affected my WBC and ANC most severely. When I was admitted to the hospital last month I had to swallow liquid potassium. YUK...I could hardly gag it down. I think that was worse than PET/CT contrast. It was like drinking thick salt water. Later I found out they could have given it to my by IV, and if I'm ever in that state again, IV it is.
Deanna, my poor onc cannot stay on top of my Fas & Ibrance schedule. I imagine having them out of sync affects their effectiveness, I just don't know for certain. She's trying to get this resolved but every time she seems to get it working, something else pops up and we're off again.
Pajim, so happy you've finally licked that cold. I let my onc try to reset my Fas/Ibrance schedule but as I mentioned to Deanna, it's not working out so well. I have another scan sometime in May or June so will see how helpful or harmful it's been since my January MRI.
Moving closer to another weekend - yay!
Amy
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Amy, I don't see why having them out of sync is a problem. In fact, it seems to me like it could be a benefit if they're at their maximum strength and effectiveness on different days, possibly giving you stronger coverage throughout the month. The only issue, I would think, arises if your counts don't rebound well, so that you have to get retested on Day 28 and/or possibly again a week later, to be sure they've come back up. But if you have a problem with your counts staying low, you would probably need to be retested (beyond Day 28) to be sure they rebound anyway. Otherwise, I'm not sure what difference it makes when you take Ibrance, since you're never totally without Faslodex in your system. Am I missing something???
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Cafelovr, that is pretty good news about you and your Mom! A cure happening would be the sound of praise heard around the globe! Thanks AmyQ for the feedback. Yes, I have yet to hear of anyone with this particular problem and still wonder if it was a fluke that has corrected itself or something else? I would like to keep these meds in the arsenal. I have huge problems drinking YUK as well. It was extremely difficult when I had a colonoscopy!
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You make good points Deanna. Throughout my Ibrance treatment which really just started early January, 2016 I've been having CBC's drawn every week even in off weeks. I don't start back again until I've rebounded enough. Tomorrow I get my new delivery of 100 mg Ibrance and will wait for one more week before starting per onc. She's very diligent in taking my blood...sometimes I think she's a vampire.
Btw, next Friday I take the train to Seattle and I'm so looking forward to it. I reserved a private room with private bath and plan on doing some sanitizing before settling in, just to be safe. I'd hate to pick up germs and arrive to my elderly parents with an infection that I spread to them. Especially since mom is going in for surgery a couple days after I arrive.
The only other train trip I've taken was to Chicago, over Thanksgiving. I felt pretty proud of myself for booking the train because that Sunday there was a blizzard that hit Chicago. Both airports were closed and the freeways were at a standstill, however my train kept on chugging all the way back and by the time it arrived home, it looked like the Polar Express. It really was a beautiful site.
As I said earlier, Deanna you always make good points. Thanks for sharing.
Amy
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Naturegirl - please stay my "partner" for round 4.
I went to UCLA today for #4 fas/xgeva shots. Bloodwork was good, so here comes a yummy pill with dinner. My sternum feels fine, just this dry cough to remind me micro-cancer critters are squatters in my pleura. Peppered my onc with questions about studies on this combo - even what meds might lay ahead. Answer for me was - stay on this quartet as long as I can. I am approved to finish my boob work on left side, meaning later this summer I can have another fat injection from my thighs to balance size. I'll plan this after my Spain cruise. Pam - missed you! Glad you are over your cold and can enjoy round 2 tonight. I'm not alone with this dinner pill. Did I mention I had a glass of white wine too. Well, not on pain meds so cheers ladies! Amy enjoy that train.
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Pam, So glad to hear you are feeling better. A bad cold can turn worse so quickly. Have e good trip!
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Hello Ladies! I have lurked for a few weeks and would like to join your conversations. I have a rare form of breast cancer (Triple Negative Pleomorphic Invasive Lobular) and have run out of chemo options. I am joining a clinical trial that combines three drugs, Ibrance, Faslodex, and a drug called AZD2014. It starts next week. Your combo of drugs is the closest I can come to understanding what some of the side effects will be on this trial. Although it is a trial meant for hormone positive bc, I am 5% progestrone positive so it was enough to squeak me into it. I couldn't qualify for other trials due to only having bone mets anddue to no solid tumor to measure progress. Apparently, bone lesions don't count. This is a phase 1 level so it is about dosing levels and what can be handled with side effects. My first dose is next Tuesday. Is this something I should start a different thread for or/and stay a lurker on this thread?
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Hi SoutherMoth, you are more than welcome to join in on our discussions here. I would start a new thread though, if I were you, as you may get much better response, and can zero in on your upcomng trial of Ibrance/Faslodex + AZD2014. Good luck with your first dose next Tuesday.
lalady, your Spain cruise sounds wonderful!
AmyQ, enjoy your Seattle train trip!
Yes, Deanna is such a great bc buddy to have here to help us all! You do make good sense. Thanks again Deanna!
Cafelovr, good news to read about your mom! Such good response to her meds and even after just having three cycles of this combo.
I received my next bottle of Ibrance, this time the 75 mg dosage. Will have to have WBC next Wed. before I can begin again, (upcoming 4th cycle) I go in for my Cat Scans this Monday and will have results on Wed. Please keep me in your prayers everyone for a good scan.
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Thanks for the welcome! My mom is on the full 150 mg of Ibrance, but she gets labs every Wednesday. Is that unique? How often during the 21 days on do you all have labs?
Thanks!
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Three pills into the second cycle and I haven't had to take a Zantac! Just shows that the digestive system can get used to anything, I guess. Chicago is windy but lovely as always. teachers are on strike. March down the river roads at rush hour on Friday. Sigh. I start working at the convention tomorrow -- hope the fatigue is a myth in the first week. Comfortable shoes!!
Southermother, you are welcome here. There are probably few women in the world on the meds you are on. I don't know what AZD2014 does, but hopefully your main side-effects will be the same as ours.
I'm having fun trying to schedule all the necessary appointments for the next month. Three blood draws and shots. I can't combine blood draws as I'm out of phase. How on earth do those of you who drive to the cancer center do it???!!!?? (I can walk from my office)
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Good morning ladies,
I just started a trial yesterday with Faslodex and Ribociclib (a sister drug to Ibrance) I'm in Canada so we like to give things special names lol. Have to say after reading the side effects I'm a bit nervous. The Ribociclib is the placebo drug so there is a 1/3 chance that I'm not actually getting it. So someone mentioned this is a chemo drug. That's not true is it? I was also told not to eat any star fruit or grapefruit or Seville oranges very specific. Happy to have found you ladies.
Wendy
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Welcome Wendy! Ibrance labeling warns to refrain from grapefruit, but I also had an odd experience with pineapple, so both are off my list. Hope are are receiving the real drug and do well. Pam - Enjoy Chicago and welcome to flats. I'm on a business trip to New Mexico on Friday, back on Saturday. Awesome you can walk to your cancer center! I drive an hour to UCLA, but then in LA I drive an hour to get anywhere. Yesterday I was in Hollywood on the Universal lot visiting Amblin (Spielberg productions). They are located in a gated cottage with roses and a pond. Nice! Cafelovr glad mom is well, but note full strength Ibrance is #125. Naturegirl, come join me on round 4, even if you are on #75. Sunny weather in CA today, so I am in my rose garden.
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