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Faslodex + Pablociclib(Ibrance) treatment combination -

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naturegirl2
naturegirl2 Member Posts: 219

I know there is a Faslodex thread but thought I would start 'Faslodex +Pablociclib(Ibrance) thread since the Faslodex thread is extremely broad and contains many pages. This way, the people who are taking this combo can respond here as it would be a whole lot easier for people who do not have the time or energy to comb this the general Faslodex thread.

I began taking Faslodex in Feb. 2015 and have been doing well until October. Month before last, my cancer antigen rose some 21 points; up from 41 to 62. This past month, the cancer antigen level rose once again from 62 to 76.6.(14 more points) As a result, my oncol. has scheduled a cat scan for this Thursday. He said he will add Ibrance to the Faslodex shots. He told me that since I started with Faslodex, a trial was completed with the Ibrance/Faslodex combo. I told him I would like to wait until the beginning of 2016 before I add another chemo drug to the mix, so I can get through the holidays without fear or sickness.

What I would like to know is how many of you are on this combo, for how long, and what side effects, if any, are you experiencing? I read the list of side effects and not happy with that. Have any of you lost or have experienced hair thinning? Please respond. thanks

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  • Cafelovr
    Cafelovr Member Posts: 75
    edited December 2015
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    I will be following your post! My mom, who is also Stage IV to bone, lungs, and liver will be starting Faslodex and Ibrance soon. Good luck with everything!!

  • pajim
    pajim Member Posts: 930
    edited December 2015
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    NatureGirl, I'll be in your boat soon too. We've been stalling close to a year to adding Ibrance to my Faslodex (been taking that 3 years). So, no experience yet, but in a few months. . .

  • naturegirl2
    naturegirl2 Member Posts: 219
    edited December 2015
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    Cafelovr, good, hope your mom will do well with her upcoming Fas/Ibrance combo. Please keep us informed here.

    pajim, what has changed with you that docs want to add Ibrance to the mix? That is great that Faslodex has warded off progression for three years!

    Waiting to hear from others who are currently taking this combo please.

  • AndysMom
    AndysMom Member Posts: 4
    edited December 2015
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    My mom took her first dose of Ibrance last night. We found out last week that she has two or three 3 cm tumors in her liver, so we are hoping this will help shrink or at least stall progression. She's been on Faslodex since August.

    I spoke with her this morning and she said that she is very tired already. Her onc didn't think that she would lose her hair - said that is a rare side effect. More common are low blood counts, fatigue, nausea.

    Hope you get good results from your scan!

  • pajim
    pajim Member Posts: 930
    edited December 2015
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    I was two years NED on Faslodex. Last winter spots started showing up on the scans, but they weren't bad enough for my onc or husband to think we needed to do anything. Three scans later we're still not doing anything but my tumor markers are rising. Sooner or later we'll have to add.

  • AndysMom
    AndysMom Member Posts: 4
    edited December 2015
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    Almost 2 weeks in for my mom and minimal side effects so far. She was very tired the first few days but seems to have rebounded since. She will get blood drawn on Tuesday. Fingers crossed.

  • Barrelracer13
    Barrelracer13 Member Posts: 6
    edited December 2015
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    As of Nov.11,2015 I have been on Faslodex, Ibrance and Aromasin.  We changed out Afinitor for Ibrance.  The Afinitor stopped working after approx. 2 years. I have quite a few skin nodules on my right breast.  I hate to be to hopeful but I think I am seeing that some of the nodules are calming down just a little. I'm in the middle of my 2nd treatment with Ibrance now.  I've also been seeing a naturopathic oncologist and she has me mixing a solution of turmeric, frankincense and cannabis oil that I paint on the spots at night.

    Two days after I went off the first round of Ibrance I started having diarrhea.  That was Dec. 3rd and I haven't been able to control it yet.  As for hair loss I haven't noticed any.  I have felt very fatigued at times.

    It would be interesting to know how many others have had the diarrhea issue with Ibrance.

  • moderators
    moderators Posts: 8,287
    edited December 2015
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    Barrelracer13-

    We want to welcome you to our community here at BCO! Thank you for sharing your experience. We hope you find this community to be a source of support and information as you continue on your treatment!

    Diarrhea seems to be a fairly common side effect of Ibrance. There are some things you can do to try and manage it until it subsides. We hope you start to see some improvement soon!

    The Mods

  • dlb823
    dlb823 Member Posts: 2,701
    edited December 2015
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    I've been on Faslodex + Ibrance since the first part of August, and so far, so good. For me, Faslodex has been quite easy. Be sure to read the Faslodex thread for some really important tips on how the shots need to be administered. Unfortunately, not all nurses or lab techs know how to do it properly. Ibrance is a bit tougher, but you're only on it for 21 days, then off it for at least 7 days. I and most women end up staying off it a few days more to give our white counts -- which Ibrance tanks -- a chance to rebound sufficiently to restart it. As far as SEs -- in addition to the low counts, which zap my energy -- my worst SE has been bloating and gastro discomfort. But my CA 27-29, CEA and pain level have all dropped significantly since I've been on the combo. Deanna

  • friends1
    friends1 Member Posts: 6
    edited December 2015
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    I'v been on faslodex since February but started on Ibrance in May.

    I noticed that I get very moody and irritable and since I had an oopherectomy in August the first few weeks after I get my faslodex are very emotional and I cry a lot.

    My hair has gotten a lot thinner too.

  • friends1
    friends1 Member Posts: 6
    edited December 2015
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    I'v been on faslodex since February but started on Ibrance in May.

    I noticed that I get very moody and irritable and since I had an oopherectomy in August the first few weeks after I get my faslodex are very emotional and I cry a lot.

    My hair has gotten a lot thinner too.

  • JTilCT
    JTilCT Member Posts: 5
    edited December 2015
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    I was on this combo this past summer and I had a great summer! I volunteered almost every day creating sets at a community theater. I was tired but was able to this. I hiked, did yoga twice a week. I had hair, I even had to go to the hairdresser for the first time in almost a year. I didn't have the diarrhea but I did go a little more than usual. It is definitely worth a try. As all therapies eventually do, it stopped working so I had to switch. I do wish it had lasted a little longer because I felt good.

  • naturegirl2
    naturegirl2 Member Posts: 219
    edited December 2015
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    Hi all,

    Since I hadn't gotten much activity on my thread, until now, I had decided to go back to the Ibrance thread started by Romansma from page 1. Whew, I got thru page 29 devoting 1 & 1/2 hrs a day but still couldn't catch up. This morning I decided to go the Ibrance thread's last 3 or 4 current pages, and that did no good. I had noticed those who were contributing to the first 28 pages were not on the last and current four. Soooo, I'm back on my thread I began in hopes people who take the Ibrance/Faslodex combination will contribute to this thread.

    I have more developments - My recent cat scan results showed a tad more progression on a lymph node, and possibly one of the spots in my lungs has gotten larger; the rest stabilized (in my lungs), sternum stabilized. But, my oncol. had new findings to share with me, a single spot on my liver, and 1 spot on my 3rd lumbar vertebrae. Needless to say I'm bummed. I see my oncol. this Wed. I had previously asked him if I could start the Ibrance with my Faslodex(I have been on Faslodex since Feb 2015) on the 30th and he said he saw no problem with that. But, since I have these latest developments and the Faslodex is failing me, I'm now wondering if he will want to add Ibrance to my monthly Faslodex shots or will he drop the Faslodex and add something else. When I was first diagnosed with Stage IV BC back in November of 2012, he prescribed Femara. It worked for some 15 months but has long since failed me. So we will see just what he wants to do here. Urrrrggh. I see him on Wednesday. Any comments are welcomed.

  • jobur
    jobur Member Posts: 493
    edited December 2015
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    I have been on Faslodex since 4/15 and added Ibrance 8/15. The combo has been good to me so far. I had slight progression last April, but more recent PETs in July and November show my bone only mets almost gone. Highest SUV on November PET was 3, down from 9 in April.

    I think I can sort the se's pretty fairly as I was on Fas for several months before adding Ibrance. The main se's I have noted with Faslodex are increased and extremely sweaty hot flashes and increased joint pain, mainly in hips and wrists. The shots themselves are not fun, but it's only a few minutes every 4 weeks. I also experience what I believe to be nerve pain after one of the shots this summer. It has never gone away and nothing shows up on PET. Not bad, but noticeable.

    Lots more se's after adding Ibrance. but nothing too severe. Very itchy arms, hive like rash and occasional red itchy bumps. This has decreased but still noticeable during week 1 or 2 of cycle. Purple bruises that appear without trauma on extremities, I believe this is due to low red counts. Headaches. Dry cough toward end of cycle that goes away during week off. Both WBC and RBC low, but not low enough to change dosage, I have stayed at 125mg through all 5 cycles. Sore mouth or/and cold sores toward end of cycle. Fatigue. The fatigue has been the only se that I have found really affects my QOL. And yes, thinning hair. Noticed recently my eyelashes are almost nonexistent.

    Please note that as I have never had chemo, I am probably a bit of baby when it comes to ses. I tend to notice every little thing.

    Hope this will be helpful to someone.

    Edited to add one more se of Ibrance. Very bad heartburn/GERD! I eat TUMs to get my calcium supplement and had previously used Zantak 150 OTC as needed but neither helped after starting Ibrance. My mo gave me an rx for 20mg omeprazole and that has taken care of the problem to the extent I forgot to even mention it.

  • artistatheart
    artistatheart Member Posts: 1,437
    edited December 2015
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    Well, I will be joining the rest of you here starting next Monday. My liver enzymes are still elevated theoretically from the Letrozole or Ibrance. If they don't come into normal range by next week I will have to have another liver biopsy. Now we are going to try this combo. She does not think it should bother my liver as much. Let us hope.....

  • dfendsu2
    dfendsu2 Member Posts: 1
    edited December 2015
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    Howdi! I have been on faslodex and ibrance for one month. Just had the 2nd loading faslodex shots. I had horrible SE on affinitor, so, hoping faslodex/ibrance better. The entire body aches of affinitor /exemestane are gone, but I do seem to have very achy hips and lower back. Alost like I'm a bit spasmy, anyone feel this? My hair has actually grown back quite a bit from the Femara /sorafenib days, and no noticeable thinning now. Will check back here frequently. Cheers!

  • naturegirl2
    naturegirl2 Member Posts: 219
    edited December 2015
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    Looks like we are picking up steam on this thread! Yay, as it is so helpful to read what we may be in store for in taking Faslodex/Ibrance combo along with helpful tips you share as issues may arise now or down the line.

    jobur, thanks for your input! It sounds like this combo is helping you. It's good to know you have gone thru 5 cycles and were not taken off for low white cell counts except for the usual week off nor did your oncol reduce your mg. I know I won't be looking forward to headaches , mouth sores or possible hair thinning. I went thru the mouth sore thing while I was on Afinitor last year. I ended up having a bone in the roof of my mouth decay.. Keep us posted jobur and thanks again.

    artista, good luck to you. Let us know how it turns out for you.

    dfend, thanks for your input. Hope all goes well for your second loading. Are you taking Ibrance at the beginning cycle when you first get your Faslodex shots? I think that is the plan for me as I will get my 11th round of Faslodex shots( I started Faslodex shots in Feb. 2015) on Dec. 30th and take my first Ibrance pill that night after dinner.

  • naturegirl2
    naturegirl2 Member Posts: 219
    edited December 2015
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    I would also like to add during the soon to be eleven months I have been on Faslodex exclusively, I have had NO SE's. The only problem I had was one of the injections in the way the nurse gave me the shots, i.e. lifting the skin in my buttocks. Other than that, it was smooth sailing for me and for that I am most grateful. The treatment with Faslodex was sooo easy! If my oncologist adds Ibrance to the mix, I too, like jobur will know the SE's if any from Ibrance/Faslodex combo is from the Ibrance. I'm still not sure he wants to keep me on Faslodex with Ibrance since Faslodex began to fail. I'll find out tomorrow. I have Faslodex shots scheduled for Dec. 30th so at that time I would be adding the Ibrance if that is what my doc recommends.

    We'' see.

  • Barrelracer13
    Barrelracer13 Member Posts: 6
    edited December 2015
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    Thank-you for the welcome mods!  It was nice to know that someone is reading and listening.  Sometimes I feel so alone. Sad to say that even when I have great family support, friends and a great doc and support system from that community as well.  The fatigue is really getting to me.  Hard at this time of year when there is so much I'd like to be doing and I have that "just don't give a darn" attitude.

  • artistatheart
    artistatheart Member Posts: 1,437
    edited December 2015
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    Thanks naturegirl, I will check back after the first shots Monday! Merry Christmas to everyone!

  • naturegirl2
    naturegirl2 Member Posts: 219
    edited December 2015
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    Saw my oncol. yesterday. He told me he could either put me on Femara (I was Femara for 15 months(Nov. of 2012 and continuing thru 2013 until Femara began to fail) with Ibrance or keep me on Faslodex and add Ibrance. He decided he would keep me on Faslodex and add Ibrance to the mix since I did well with SE's and, for the most part, Faslodex kept the nodules in my lungs in check as well as my sternum. One lymph node is larger though, as well as a single spot in my liver showing up for the first time, and something, but he was not sure what, lit up on my 3rd lumbar vertebrae from recent cat scan results. Sooo, as of December 30th, when my next set of Faslodex shots are scheduled,(started Faslodex shots in Feb. 2015) that night I will take my first Ibrance pill after dinner. A white blood cell count is scheduled for two weeks from December 30th. The protocol is taking Ibrance for 21 days, off one week, and returning on next cycle if all is okay. My oncol. said he just came back from a breast cancer convention and said that there is very good response to Faslodex/Ibranco combo, the latest and the greatest and everyone is wanting to get on that combo.

  • masonsmawmaw
    masonsmawmaw Member Posts: 119
    edited December 2015
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    Hi Ladies! Hope everyone had a wonderful and blessed Christmas day! Just wanted to join this thread since it appears to be more specific to the Ibrance/Faslodex combo. I began Faslodex in late July and Ibrance sometime around September. Just started my fourth cycle tonight. So far...just minimal SE's for me and I am on the 125mg dose. No loss of hair or anything major. Just some minor cracking/sores in the corners of my mouth and my eyes seem to water all of the time. Blood counts have remained stable enough to remain on the higher dose and my CA 27-29 has dropped over 100 points since beginning this regimen. My mets are to spine, pelvis and femur so I am hopeful to see less "glowing" following my next scan. I truly hope that this regimen works for me for a long, long time!!

  • masonsmawmaw
    masonsmawmaw Member Posts: 119
    edited December 2015
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    Oh...by the way...those weird pressure headaches do tend to disappear after the 2nd cycle or so....

  • artistatheart
    artistatheart Member Posts: 1,437
    edited December 2015
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    So, I had my first shots yesterday and my nurse was very up on all of the recommendations for administering the injections. Aside from the initial poke it was painless and I feel fine today. Just a VERY slight soreness at the injection sites. I am supposed to start back up on the Ibrance tonight as well which I am not thrilled about. Just afraid the liver enzymes will elevate again and we weren't sure what is causing that, Letrozole or Ibrance. Plus I did get some weird SE's from Ibrance. But if it works that is what counts so......here we go! Hope everyone is doing OK and new meds appear in the New Year!

  • naturegirl2
    naturegirl2 Member Posts: 219
    edited December 2015
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    masonsmamaw, really great that you were able to stay on the highest dosage, after your 4th cycle, super news your CA has dropped 100 points, wow! Minor SE's, that's great. This is very encouraging news for the rest of us! May I ask you what your weight is? I noticed on the info my oncol. gave to me stated increments/dosages were given according to weight and height and the highest being 125 mg. When I approached my oncol. with this written info(for which HE gave to me), he said they always like to start with the highest dosage and work down if necessary.

    artistalthea, so it looks like they are adding Faslodex to your Ibrance that you began in August. What were the weird SE's while on Ibrance? I sure do hope all goes well for you. Let us know.

    I go tomorrow for my Faslodex shots(11th month) and tomorrow night after dinner I will take my first Ibrance pill. I am a bit nervous to say the least.

  • artistatheart
    artistatheart Member Posts: 1,437
    edited December 2015
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    Naturegirl, The first week I had pain in my jaw and then a KILLER toothache one morning where I had had some dental work done months before. It was very weird and went away after a day but had to take a major painpill. My nose was at a constant run but thick and "sticky". DRY MOUTH! Hydrate well. Low grade pressure headaches, nothing to cry about but annoying. By the end of the 3rd week I was definitely feeling MAJOR fatigue but seemed to get better on the week off. I have to start again tonight too so a bit apprehensive but will just deal. Some people get very little SE's....

  • AmyQ
    AmyQ Member Posts: 821
    edited December 2015
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    I start Ibrance soon and have been receiving Faslodex since October. The SE's sound awful, however if it keeps us NED then it's worth it.

    Amy

  • Sarah0915
    Sarah0915 Member Posts: 81
    edited December 2015
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    My experience with the two medications has been almost identical to jobur's except I was on Faslodex 11 months before starting Ibrance. I did have some diarrhea problems which pretty much have resolved, possibly from decreasing the amount of dairy products I was using.

    artistatheart, I started using Biotene toothpaste several months ago for dry mouth and sensitive gums. It has been very helpful. They also have just a dry mouth rinse.

  • Sarah0915
    Sarah0915 Member Posts: 81
    edited December 2015
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    My experience with the two medications has been almost identical to jobur's except I was on Faslodex 11 months before starting Ibrance. I did have some diarrhea problems which pretty much have resolved, possibly from decreasing the amount of dairy products I was using.

    artistatheart, I started using Biotene toothpaste several months ago for dry mouth and sensitive gums. It has been very helpful. They also have just a dry mouth rinse.

    Amy, the side effects are very tolerable for me especially since I feel much better overall and my tumor markers have dropped by 50%. They were worse over the first cycle of Ibrance and have improved since then. I hope you have success with few side effects. Just be sure to follow the instructions on taking it after you have eaten instead of on an empty stomach. I did that once and it was followed by pretty violent vomiting. Not sure if others have had that problem or not.

  • artistatheart
    artistatheart Member Posts: 1,437
    edited December 2015
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    yes thanks Sarah, I did get both of those items and it did help both the dry mouth and sore inner mouth. I also make sure to drink lots of water!