Faslodex + Pablociclib(Ibrance) treatment combination -

AmyQ

Thank you Sarah. I'll make sure to follow the directions as your experience is not one I wish to repeat. I'm having a PET scan first so my onc has a baseline scan to refer to especially since tumor markers do not appear to be reliable for me. My latest TM's are all in the normal range even though I hve confirmed progression.

Happy New Years everyone!

Amy

naturegirl2

I took my first Ibrance pill last night. This is the first time I have been fearful to take a new med.for some reason. One of the side effects are pulmonary embolisms. I'm not sure how soon one would have that SE after taking Ibrance.(initially or down the road) I talked to the hospital's pharmacist about that particular side effect and she said according to the trial, 4 or 5 patients out of 100 would get that SE. I followed all instructions, i.e. take on a full stomach, preferably a night, hydrate, sit up to digest food for a number of hours before retiring. I did have insomnia but I really think that was due to a heavy amount of java chips(not by my choice) in my Java chip frappie from Starbucks yesterday. I treated myself since I had monthly Faslodex shots yesterday as well. I was so glad to see the chemo nurse who administered Xgeva shots to me a couple of years ago(she was great) and gave me my Faslodex shots yesterday. The chemo nurses are always different each time I go for shots. As of this writing, I'm feeling good! Now for my 2nd Ibrance pill tonight. artistalthea, how did you do with your first Ibrance pill last night?

Happy New Years everyone!

artistatheart

Naturegirl, Hate to say I didn't do it. I am a bit reluctant because I would like to give the Faslodex a few weeks to see if it screws with my liver enzymes. The only way to know for sure is to separate the two for now. My Onc did not suggest this and I wonder why. Just wanted me to start right back up. But on the other hand it seems the Ibrance/Letrozole worked for me as well. So I don't want to wait to long. I honestly don't know what to do here....

naturegirl2

artistatheart, that is a tough one. Sometimes no one knows our bodies more than ourselves, but we must trust in our oncologists. My oncol. got me this far so I continue to go along with him. Since we get Faslodex every 30 days, and it is in your system for two weeks, you might have something there but who knows, I certainly do not want to steer you in the wrong direction. Hope all goes well for you and you make the right decision. Keep us posted.

Godspeed

My wife was on Femara + Ibrance, but it wasn't working (more bone mets). We are still really hoping that the Ibrance (being the new drug) isgoing to be a big help.

We are really hoping that the Faslodex + Ibrance does work. She has not been on Faslodex before.

My wife started Faslodex yesterday, and this New Year's Day started with nausea and vomiting. I hope that is an indication that it is working. The other Faslodex thread said this is normal, but my wife has not had this reaction to any of the previous drugs. I will be extra vigilant knowing that her energy level will be low.

My job is changing Insurance from Anthem to Aetna, and I am hoping they will still cover it.

I hope you ladies do fantastic on this combination!!!

Sarah0915

Godspeed - I have nausea and vomiting but mostly because of liver mets. I do think the Faslodex and Ibrance exacerbated it a bit. I was on Faslodex for about a year before adding the Ibrance. It has gotten much better over time but I still have bouts with nausea. Be sure she is not using too much dairy. When I was really having problems I was relying on yogurt and Instant Breakfast a lot for nutrition, mostly for the protein. My doctor suggested I cut back on dairy product and try to use soups instead and that made a huge difference. I use orally disintegrating (ODT) Zofran for my nausea and it work like a charm immediately.

My tumor markers actually increased a little after my first cycle of Ibrance and I didn't feel too great. But, the second round made a huge difference. I feel very much better and my tumor marker on CA 27-29 dropped from 465 to 259. My doctor and I are both very pleased. Her first month or two may be kind of tough but I hope she has great success with the combination.

Just an aside and maybe TMI but - I don't know if you picked up in your reading that your urine has an awful chemical odor for a few days after faslodex injections. I didn't know that when I started and it freaked me out. Mine clears up in 3 - 4 days.

shelbymarie73

Hi - new here. I have been on Abraxane for 9 months with failure noted a couple weeks ago on pet/ct scan. MO wants to start Zoladex, Faslodex and Ibrance. I was on Tamoxifen after my breast CA DX and hated it. My QOL life was awful and even though I took 40 mgs. everyday it ultimately failed anyway. I had such terrible hot flashes, night sweats and significant weight gain. I have also watch my sister and mother who have had hysterectomies now in menopause and they are miserable too.

I'm terrified. I don't like shots and I struggle enough already with weight gain after my rib removal. I excercise when I can and eat right. I am also dealing with symptoms of left arm lymphedema and fearful that weight gain will only add to this uncomfortableness. I'm not usually like this, so scared... but I have had a good run with Xeloda and Abraxane. My QOL has been fabulous.

If anyone has words of encouragement, happy stories about dealing with SE's, maybe this line of treatment offered a better QOL please I need something good to look forward to.

naturegirl2 -once I start treatment I'll be more than happy to post about se's and experience.

Thank you - shelby

AmyQ

Hi Shelby,

Welcome but I'm sorry to meet you this way. I've had 3 months of Faslodex and barely feel the shot, in fact a couple times I never even knew the needles had gone in. I hope you have good luck like that. In the meantime, my SE's seem to be quite the opposite. I seem to loose my appetite for the first week or so after the shots. It slowly rebounds but then I have another shot. I'm down 21 pounds since October. I haven't had any hot flashes whatsoever so that's good. On Femara I had them for about a year then they slowly diminished. I haven't started Ibrance yet and am a little anxious to find out how my body reacts to it. But I keep telling myself, it's what I have to do to stay alive so a little sacrifice on my part will be worth it.

Good luck to you.

Amy

artistatheart

Thanks Naturegirl, You are very right that I should be trusting my Onc. I wish I felt more confidence in her, but have had a couple of incidents that I have just stuck in my head as question marks??? I can't quite put my finger on what is bothering me except to say she does not seem very invested in me as far as having an optimistic attitude..... Nor does she seem caught up on some of the current news and research. I hope things improve as is it not easy to keep on working full time while trying to deal with this full time job as well. I really do not want to shop around or travel during the winter for a new Dr. I think I have decided to go ahead and take the pill tonight and see how I feel. If I get any of the rapid heartbeat and shortness of breath I will stop again. Sarah, I have not had any nausea with this first loading shot of Faslodex, but yes, suddenly have the smelly urine thing even though I drink lots of water! Welcome Godspeed, hopefully your wife's N/V will clear up when her body adjusts to the drugs. Welcome Shelby, so far I have had very little SE's with Faslodex. Ibrance though, I have had a few such as sore gums and inside of mouth, a sore jaw bone for a few days, super dry mouth and cracking lips which there are remedies for, super sticky nose mucus (Ewwww TMI!) Watery eyes. And we are still unclear what caused my elevated liver enzymes and shortness of breath. I plan to restart this med so we will see how it goes.

naturegirl2

Godspeed, from what I have read, it may take a while before seeing good results on the Faslodex/Ibrance combo. Your wife needs to drink plenty of water before going in for her Faslodex shots as well as during and after for a while. What I do is eat a pack of peanut butter crackers before I have the shot as well. Also what helps is after she takes her Faslodex shots, it is helpful to walk for a while. Walking helps circulate the meds in the shots that may stop cramping etc. I find both tips have been helpful to me and hope for the same for your wife. Good luck and keep us updated.

Hi shelbymarie, hopefully what I said above will help you as well. The shots really aren't bad at all. I read that taking the weight off one leg at a time on each side when they give you the shots helps. I get a shot on each side of my buttocks, one at a time. Some people get both shots at the same time.

AmyQ, good luck with Ibrance ,hope you have no SEs and it works just fine. Let us know.

artist, wish you good luck with your first dosing of Ibrance. Hoping for no SE's this time for you. Let us know.

I have a development. I began Ibrance December 30th, taking my 3rd pill last night. When I took my first pill, I did have a little congestion and more than normal mucus in my throat. Yesterday it has gotten worse with some sneezing, plenty of blowing of nose and this a.m. a sore throat. I do not have a fever but thinking my poor white blood cells are having to work overtime and they may become compromised by Ibrance. Here we are on a Saturday and I'm not sure what I should or should not do. I increased my Vit Cs and drinking lots of fluids. I'm wondering if a Benadryl may help me. I surely do not want to take something that would give me negative results with regard to Ibrance. Urrrgghhh. Suggestions?

artistatheart

Hi Naturegirl, I started back on the Ibrance and have had 3 pills so far. The first go round with this med, I had all of the above. Increased throat mucus, sore throat, dry nagging cough, lots of sneezing! All of these leveled out about 3 weeks in except my nasal passages stayed "sticky" the whole time. So far so good this time, on Faslodex/Ibrance, no SE's so far, except sometimes a little indigestion which may be the Faslodex. My WBC's went down to 3.4 last time but never below that and I was on it for 4 months. My biggest problem on the Letrozole/Ibrance combo was the rapid heart beat and fatigue/breathless feeling and the high liver enzymes. Because I am feeling so well so far it may have been the Letrozole. I am anxious to get my next lab and see how the enzymes and WBC are doing. And TM's of course.

shelbymarie73

Thank you very much for the welcome! And thank you for the suggestions and words of encouragement. I See my MO on Thursday to talk about a plan.

naturegirl2

artistatheart, interesting that you had the same SEs the first go round as I now do. So glad you are not having them this time around. Bet that was scary in having rapid heart beat along with breathlessness. Hoping for no SE's this time around with your new combo. Thanks for the info you provided. I'm hoping my cold symptoms clear up before the 3 weeks that you mentioned you were having the first time around.

On my eighth day of Ibrance tonight I'm feeling a tad better but still having cold symptoms. I called my oncol. two days ago and he said I must have caught a head cold, that the symptoms I am having have nothing to do with Ibrance. Well, I did a little more research the following day and discovered in reading Accredo Speciality Pharmacy circular that came with my Ibrance prescription via Pfister, one of common side effects listed of Ibrance are -cold sysmtoms such as stuffy nose, sneezing, sore throat. I will bring this literature to my oncol next time I see him so he can give his next Ibrance patient the correct info if that does happen. I am having some pain/soreness in my upper right side of back area that started last night. A heating pad seems to help. One week under my belt. I will have WBC taken on the 13th of January.

AndysMom

Question about WBC levels. I've been reading in this thread and online that 2+ or even 3+ is normal. Can anyone confirm?

My mom was to start her second round of Ibrance on Tuesday but was told to hold off because her WBC was too low. The nurse told her that she was .7-.8 and they wanted her to be at least 1.0. Her baseline WBC before starting Ibrance was 1.3. She takes other immunosuppressant medicine (Imuran) because she had a kidney transplant decades ago, so that could contribute to why she is so low, but .7 seems REALLY low. Maybe they were measuring something else in her blood? I haven't spoken with her nurse or MO yet, so I'm not sure the specifics.

Thanks for any help!

dlb823

AndysMom, do you know for sure which lab test they're watching? My onc watches the granulocytes. Mine dip to .8 and must be at least 1.0 to restart Ibrance, which usually takes me another 4 or 5 days after the 7 days off to get to 1.1 range. This past month, I had a bad cold and held off until I had labs again when restarting Faslodex -- so about 16 days total off Ibrance --- and my grans has rebounded to 3.1! So a few days can make a big difference, although not sure about the immunosuppressant med. That's definitely a question for your Mom's onc. Deanna

artistatheart

Naturegirl, still so far so good except the breathless feeling has not completely disappeared with a intermittent annoying little cough. Mu Onc basically shrugged it off.....I have found that my Onc also doesn't know everything about what she is prescribing. She told me that Femara was still under patent and they don't have generics yet. Patent was over in 2008 and they have 11 generics! So I guess we have to be our own researchers and advocates. Kinda scary for me to have to be that responsible for this complicated disease. I will have my next lab and the 11th and hope to see liver enzymes and WBC numbers normal or close to. Good luck wit yours! And I hope the "head cold" disappears!

AndysMom

Thanks, Deanna! I don't know, but I will definitely ask! She said it was WBC, but I'm guessing there is a subtype in there somewhere.

naturegirl2

Thanks artistatheart, I'm starting to feel better. Hope you have good results on the 11th. I'm going on the 13th for WBC. New to the WBC thing so I'm not sure what numbers they will use, what the norm is, etc. etc. Can someone tell us here? Thanks

Barrelracer13

I have been off the Ibrance for 12 days now but will probably go back on for my 3rd round tomorrow.  I think we have gotten the diarrhea under control so that is good.  If it comes back I have some meds that seem to be effectively dealing with it.  I see my onc on Monday and think he will be taking me off the Faslodex.  So I will be on only Ibrance and Aromasin.  It will be interesting to see if this combo alone will keep me progressing with the regression of the skin nodules.  Do I need to find a forum for Ibrance and Aromasin since I won't be on the faslodex anymore?

naturegirl2

Barrelracer, glad you have the diarrhea issue under control. Let us know what your oncol. says Monday, and good luck. Feel free to stay with us here. There is a solitary thread for Ibrance. I wanted to fine tune information so that is why I started Ibrance/Faslodex thread. It got too cumbersome to read over 130 + pages. I'm not sure about a thread on Ibrance/Aromasin though.

Fitztwins

I had problems getting Ibrance approved with Falsodex.

Anyone else?

SonyaS

Yes, I was denied the first time around, but got some great advise and assistance from this discussion board. I sent my insurance co (BC/BS) a request for an appeal on the decision along with some articles about Faslodex and Ibrance trial. I had no problem getting it approved after that. Many times the first decision is made on what I the standard line at the time, with little of no really attention to what is going on in the field. My onc did not really know much about the appeal process. This is where it really helps to be your own advocate.

Sonya

SonyaS

Any one else having major problems with ANC recovery? My onc now has me taking 75mg every third day? Not sure how effective the Palbo is at this reduced dose..

artistatheart

I had to stop Palbo all together today as we suspect it is the cause of my elevated live enzymes again and rapid heartbeat. Anyone else have any of these symptoms on Ibrance? Sort of bummed because it seems to work but relieved too to feel more normal. Got my 2nd loading dose Of Faslodex and see what transpires. Onc thinks I may be able to return to Letrozole down the road as well which was good news!

JFL

Artist, I am sorry to hear that you had to stop Ibrance. I hope you get some answers and clarity as to what is causing your symptoms and get on some meds that don't raise your liver enzymes.

I haven't had those symptoms with Ibrance . . . . I did have elevated liver enzymes for a short time after I started mets treatment. They think it was my body breaking down the rapidly dying cancer cells. At that point, I was on Faslodex/Aromasin (before Ibrance was approved and added to the mix). Also, I had read at that time that Aromasin could raise the liver enzymes. It resolved itself after a month or two though.

artistatheart

Thanks JFL, I hope they resolve now without the Ibrance. It worries me a lot...That's an interesting point of view on your's raising because of breaking down cancer cells. Wish we knew a lot of things definitively!

jobur

Artist, Sorry to hear your liver enzymes are up again. I wondered too why your mo didn't start you on just Faslodex first. I hope Fas alone will prove to be a good, effective tx for you. I sometimes wonder about my mo's knowledge base too. It's good to have trust, but I think we really have to watch out for ourselves.

Fitz, Good luck with your appeal. Also check out the Pfizer site for help on copay once approved.

Shelbymarie, How are you doing? I think/hope you will find this an easy tx if you had good QOL on Xeloda and Abraxane. If the hot flashes/night sweats get too bad, you might try adding a low dose of Effexor or other antidepressant. It has been helpful to me.

Naturegirl, Hope your labs come back with good news for you tomorrow. My clinic shows normal low for WBC at 4.1. I believe it needs to be above 1 to continue Ibrance.

I noticed in December that my eyelashes have gotten very sparse. Yesterday I realized I have almost no hair on arms or legs anymore. Hair on my head is thinner, but only noticeable to me. I'm on my 6th cycle of Ibrance now and it seems to be working well and other se's subsiding a little each month. No rash or sore mouth last cycle. I am still on 125mg and have not had to reduce or wait to restart. WBC has been holding steady in the low 4's.

Best wishes to all for a good year in 2016 and a long run on this combo.

artistatheart

jobur and JBL. Already two days off of Ibrance and the heartbeat is much more normal. A girl on the Ibrance thread said she had the same problem with liver enzymes on the higher dose, lowered to the 75 dose and is doing fine now. So I may present that to my Onc down the road. We REALLY do have to watch out for ourselves jobur! I could recite a few other instances with both Onc and Gastro guy that make me think that they are prescribing medicine for me without really knowing a lot about it. I know it is impossible to know it ALL, especially with a new med, but the research I have dug up in my short time as the patient should already be on their radar I think......

shelbymarie73

hi! I'm doing well thank you for asking! I haven't started treatment yet as I have come down with a cold and sore throat. See my mo this week to set everything up. I have mentioned the Effexor to him and he agreed that could happen if necessary. How do I set my profile up to receive emails to follow thread? Ugh... lol

naturegirl2

jobur, it really sounds good for you in taking Ibrance some 6 months and seeing a good response and little SE's, as well as not having to get off of Ibrance during the 6 months, nor a reduction in dosage. It gives us lots of hope and encouragement; thanks for that and giving us the heads up on normal/low WBC s (4.1)

dlb823, thanks for your interpretation of WBCs. May I ask you did you have good response on your Cat scans due to taking Faslodex/Ibrance as well as how long have you been on this combination?

artistatheart, glad you are feeling better and your heartbeat is more normal for you. That must have been scary. Let us know how your next oncol. appt. goes.

shelbymarie, you would need to click on your profile, or settings, there is a window that pops up to highlight 'follow Favorite threads, or let me know when thread has response', something like that. You need to highlight that, or you could email Moderators here and they might be able to walk you through that someone better.

Okay, I had my first WBC lab work yesterday since beginning Ibrance two weeks ago. That evening I heard from my oncol.'s nurse. They measure WBC by granulocytes. She said WBC needs to be within a certain range (which is 1,000) in order to continue on Ibrance, as jobur & dlb823, said earlier. My WBC yesterday was 1.7 so my oncol. said I can continue taking Ibrance for the 3rd week. I began pill one on my 3rd week in cycle one yesterday, a novice for sure! So far so good. My next full lab is scheduled for January 22nd. Looking forward to my birthday this Monday and hope I feel good as I have an out of town trip for four days planned. At that point, I'll be on the end of my third week of Ibrance, first cycle.