Faslodex + Pablociclib(Ibrance) treatment combination -

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  • shelbymarie73
    shelbymarie73 Member Posts: 35
    edited May 2016

    interesting thing today with my CMP. Had my first treatment of Gemzar/Carbo today. And although I'm not on Faslodex or Ibrance anymore I wanted you to know my ALT and AST liver enymes had quadrupled since last tested a month ago! 135 and 115 respectively. Since that time, I'd had my 5th and final Faslodex shots and completed my 3rd cycle of Ibrance 10 days ago. Pharmacist and MO said it was definitely due to Faslodex.

    Just wanted you to know to make sure your MO checks your CMP's before your monthly shots!

    Good luck ladies!

  • AmyQ
    AmyQ Member Posts: 821
    edited May 2016

    Thank you for the tip Shelby.

    I never quite understood the need for loading doses f Faslodex, until now. Due to travel and a variety of other reasons, I haven't had a Fas shot since March. I got one yesterday and can honestly say it feels like I was hit by a slow moving train. High speed would put me out of my misery...this feels awful from the bottom of my toes to my eyeballs, aches and pains galore. Plus the nurse who did the injection got the second one done in 17 seconds, I counted. That site is also killing and bruised.

    Why can't these people learn? This is the second time I've had an impatient nurse.

    Well, enough complaints, I'm going to focus on a meeting I have today. I've always wanted an in ground swimming pool and after years of asking, my DH finally agreed to at least explore the idea. We only have 4 to 5 months of pool use here in Minnesota but I'll take it. Floating free form feels so great on my achy bones and sore muscles so I consider a pool to be therapeutic. I wonder if the IRS does? Kidding!

    Amy

  • HLB
    HLB Member Posts: 740
    edited May 2016

    Hi Ladies, I will be starting this combo on Friday. I have read about 6 pages and got a lot of good info, thanks to you all, so hopefully I am prepared. I saw 20 and 17 seconds mentioned and got the impression it was not slow enough for the injections. How many seconds is a good amount? I don't like when they give the XGEVA too fast and I don't mind complaining. You guys probably know this but just in case: if you have commercial insurance (meaning not medicare ot medicaid) you can get a $10 copay card from Pfizer website. My copay would have been $200 and I have pretty good insurance. Hope everyone is feeling good. Thanks, Heidi

  • pajim
    pajim Member Posts: 930
    edited May 2016

    HLB, minimum 30 seconds for each shot. The label says 1-2 minutes per shot. Tell the nurse to GO SLOW. That you don't mind the needle is in that long. Often they go faster because they think the patient wants to get it over with fast.

    When the Faslodex is cold, it's harder to push. You want it easy to push (warm!!) but they should take it easy.

    Good luck!

  • HLB
    HLB Member Posts: 740
    edited May 2016

    Thank you Pajim. I was assured they're very good at it so I'm not too worried but I do get an impatient one every once in awhile. I'm a big baby and I insist on everything being as painless as possible.

  • funthing42
    funthing42 Member Posts: 236
    edited May 2016

    CMP just sent shivers down my spine. Hard to believe along with cancer I would get a doctorate in wtf.

    I was told I couldnt metabolize tamoxifen. One would think this would be standardized care to run necessary BW.

    Sorry about spelling errors no spell check lol.

  • auroaya
    auroaya Member Posts: 784
    edited May 2016

    Hello everyone I joined this thread a few months ago but I haven't posted mainly because I'm doing alright I do read every post and if I have something worthwhile to contribute I jump in. Today is a good day I had my first appointment with my oncologist since I started Ibrance+faslodex and the good news is my tumor markers have drop! Yay! It's working! And with relatively few side effects mostly nausea. Hope all of you get good news and those of you struggling prayers and hugs.


    Aurora


  • funthing42
    funthing42 Member Posts: 236
    edited May 2016

    Thank you for words of hope. Im so far Happy inregards to side effects. Waiting for markers.

  • Wendy3
    Wendy3 Member Posts: 872
    edited May 2016

    Thats great news Aurora I will know next week have my CT scan Friday crossing my fingers too..

    Wendy

  • ninaca
    ninaca Member Posts: 232
    edited May 2016

    Good news to report but sorry I'm only just getting back on this thread. The Ibrance/Faslodex combo has been very successful in reducing the size of my liver met (I only have one) and my tumor markers go down by at least 5 each month. They finally stopped going up when I started the combination at 181 and now 51 (they even stopped and starting going down on the Faslodex before I got to start the Ibrance). The Femara had stopped working (it worked for 14 years). I've had about 11 cycles now of the combo and I'm ready to have the tumor blasted with radio frequency ablation (RFA), or now it's microwaves, not sure which. Just now sure if I should have laparoscopic surgery or less invasive RFA. No data available to help decision.

    I had a sore throat, and stuffy nose as one of my side effects. The GERD was the hardest to deal with. I ended up on a reduced dose of 100 mg which was better than the original dose for me. Great, sunny, warm day today. Need to go outside now.

  • funthing42
    funthing42 Member Posts: 236
    edited May 2016

    Best wishes with your radiofrequency ablation. I hope all goes well for you. :)

  • ninaca
    ninaca Member Posts: 232
    edited May 2016

    First off- what's a CMP? Hard to read posts when I don't know the acronyms.

    Now about an unscientific Faslodex experiment I did- last month I decided not to do anything hot or cold to help the area that receives the injection. I was hurting a bit afterwards so this time I decided to sit with a heating pad on each site for a few minutes before the injection and used my own electric heating pads when I came home (while watching TV). It was MUCH BETTER for the rest of the month when I used heating pads on the injection site the first and second day! I had done ice a different time but this was the best. I'll repeat it the next time I go and see if I get the same results.

  • kayrnic
    kayrnic Member Posts: 111
    edited May 2016

    Hi ladies.

    I am about finished with round 2 of Ibrance and get my 4th faslo shots on Monday. My "question of the day" is...... at what point did your docs scan you to see if the protocol was working? I want to ask my oncologist what she thinks on Monday, but like to know if what she says is in line with the experience of others.

    Besides fatigue, side effects have been really minimal. My blood counts (white cells) drop, but I haven't caught anything yet, so it's been uneventful so far.....knock on wood.

    Nina.....I can't believe Femara worked for 14 years!!!!! That's incredible!

  • dlb823
    dlb823 Member Posts: 2,701
    edited May 2016

    Kay, my onc waited 6 mos -- mostly b'cuz my TMs and pain level were dropping significantly and she knows I'm adverse to too much scanning, so we were both comfortable holding off. It wasn't a pre-set time frame. Had things looked different, we would have done it sooner. We agreed it was time at 6 mos. because it had been long enough that change should be fairly evident.

    CMP isn't an an abbreviation we commonly see here, but possibly Complete Metabolic Profile -- although I'm not sure from the way it was used above. But there's a list of abbreviations here. https://community.breastcancer.org/forum/131/topic...

    Deanna

  • shelbymarie73
    shelbymarie73 Member Posts: 35
    edited May 2016

    Nina- a CMP is a complete metabolic panel. It checks electrolyte balance such as sodium and potassium. It also checks your liver enzymes, blood glucose, calcium, creatinine and several other body levels. It is a broad screening tool and can help decide if other more specific blood tests are needed. In my case I get a CMP monthly. Please do not confuse this with a CBC.

    A CBC, complete blood count, checks your cell counts such as white, red, platelets and neutrophils(which is a white cell technically but one specific to our immune systems). I get a CBC weekly and did so while on Faslodex/Ibrance.

    I hope this helps and thank you for the question. I'll make sure I'm better at explaining next time I post since neither of these acronyms are on the list in the thread mentioned above.

    Good luck and I hope Ibrance/Faslodex work for you!

    Kayrnic, I get a pet/ct every 3 months. My TM's have never showed up (until recently) and the only way to see if a treatment is working on my bone mets is via a scan.

    Best wishes ladies!

  • funthing42
    funthing42 Member Posts: 236
    edited May 2016

    Hi

    I just asked for tumor markers im at 3 mos. Since my last. Pet scan I will ask for when I figure out the markers.

    I really just completed one cycle of Ibrance and Faslodex Im starting my once a month shot. Finished the double doses.

    I did do the Caris biomarket testing. It was very informative.

    Nina how were the side effects for Femara?


  • funthing42
    funthing42 Member Posts: 236
    edited May 2016

    Hi,

    Feb. 60's-82-83now tumor marker trek.

  • funthing42
    funthing42 Member Posts: 236
    edited May 2016

    hi

  • jobur
    jobur Member Posts: 494
    edited May 2016

    Aurora, so nice to "see" you here and wonderful to hear your TMs are down. Hope the nausea has decreased or gone away and you are enjoying life.

    Kay, I would want a scan after 3 or 4 months after starting a new treatment. I am going 6 months this time after a couple good scans, but wouldn't want to wait that long otherwise.  Do your TMs tell you anything?

    ShelbyMarie, How is your new tx treating you? Hope you are doing well!

    I just realized I have now been on Faslodex a full year . It's been good to me so far, hoping the same for everyone here!

  • pajim
    pajim Member Posts: 930
    edited May 2016

    Went in today for shot set #42 (I think), and to begin Ibrance #4. Had a nurse I hadn't seen in a while. Turned out she's been on maternity leave and has a very cute 6 month old son.

    She did a nice job and my neutrophils are hanging on by a thread.

    Last scan was in February when we decided to start Ibrance. I imagine the next set will be some time late summer or fall. He'll say "but you feel fine, don't you?" and I'll admit that yes, I feel fine. [mostly]

    Hope you all are doing well . . .

  • artistatheart
    artistatheart Member Posts: 1,437
    edited May 2016

    #42 is awesome Pam! Glad you Neutro's are hanging in and you are feeling well. Aurora, when I first started ibrance the first time, I got sort of nauseous for a few weeks. Then it went away....

  • HLB
    HLB Member Posts: 740
    edited May 2016

    Well I got my first butt shots today, not bad at all. I just ate a bunch of pizza and took my first Ibrance pill. Very nervous. They sent it to me with a plastic ziplock bag to keep it in labeled chemotherapy drug transport bag. Should I be wearing gloves to take this pill? I'm not liking the idea of it. I read a post that said you have to eat A LOT of food, like a big meal. I don't usually eat big meals so this is going to be inconvenient I think. Well I hope it works! Thank you all for informative posts.

  • artistatheart
    artistatheart Member Posts: 1,437
    edited May 2016

    HLB, It does say not to handle the pill for long. But overall when I was on this drug it was pretty do-able. I had a few disconcerted SE's at first but most of it settled down after about two weeks. Fatigue was the big one for me. I am about ready to start on a lower dose soon...And yes, eat a normal meal.

  • HLB
    HLB Member Posts: 740
    edited May 2016

    Thanks artist, I got a little scared and ate almost a whole pizza lol. I noticed with the shots that the left hurt more than the right. They were very high, almost on my back. Definitely above the butt crack. I'm already tired but if fatige is the worst of it I will take it!

  • AmyQ
    AmyQ Member Posts: 821
    edited May 2016

    HLB I eat very little these days because of Ibrance - it has tanked my appetite but what I do eat is sufficient to not hamper my ability to digest the pill. I also don't worry about touching the pill since we ingest it I cannot imagine that holding the pill in our hands could be harmful. Good luck - I hope Ibrance is good to you.

    Amy

  • HLB
    HLB Member Posts: 740
    edited May 2016

    Thank you Amy. I don't tend to get bad SES (so far) so maybe I can get away with my normal way of eating. I hope you are feeling good.

  • dlb823
    dlb823 Member Posts: 2,701
    edited May 2016

    HLB, whatever SEs you might get, don't panic and think it will be long lasting. One strange thing I found w/Ibrance is that SEs come and go, and as a whole mine have diminished greatly over the 10 mos. I've been on it. But I remember during the first month or two having everything from indigestion to the big D to nausea to just a bit of bleeding from various places, to really bad bloating and gas. And, as I said, most of them never stayed around or have become pretty much a non-issue. You may also need to experiment with when you take your pill. I started out at night, but some of the gastro issues interfered with sleep, so I switched to midday, and the gastro issues also were much improved.

    I think the chemo warning on the bottle has more to do with being very careful about disposing of any unused meds. You don't have to be afraid of handling Ibrance. They just don't want you to leave them around or dispose of them where someone else might inadvertently get ahold of them.

    Good luck! As long as your counts don't tank (the worst potential SE), you should be fine. Deanna


  • HLB
    HLB Member Posts: 740
    edited May 2016

    Hello Deanna, and thank you for the info! It's been 2 hrs and I'm still feeling normal so I guess I'm not nervous anymore. The onc and his nurse told me about the low counts, and they said that so far it hasn't been a problem for anyone. She said it's the strangest thing, the counts go low but no one has gotten an infection so we just let them continue. That was reassuring but I'm sure there are many here who have been affected by the low counts. Maybe they only have 3 patients on it lol.

  • zarovka
    zarovka Member Posts: 2,959
    edited May 2016

    I try to take Ibrance with lunch, just a normal small lunch, but sometimes it doesn't happen and I take it between meals. I don't feel any different.

    I am off Ibrance for 3 days after completing my fourth cycle. In the last week of my fourth cycle, my skin felt thin like paper and my fingers were stinging. My skin was breaking with the slightest scrape. The scrapes got inflamed and pussy, all very disconcerting. The hand stinging was bad on Sunday, the last day of the cycle. I am thinking it was peripheral neuropathy, although I don't know what that is exactly. In any case, 3 days into my week off the hand/finger stinging is gone. Skin is still thin. Taking care with what I do with my hands.

    I have fatigue. It's still there on my week off. I suspect the letrozol and not the Ibrance. I had to move my family of four into a 3 story walk up on the last week of the cycle and it was really hard. This protocol has slowed me down and I have to adjust what I can expect of myself.

    So that is my side effect summary for the end of cycle four. So far it has been livable. I had headaches and I very bad sleep the first two months. Those are gone. I agree that side effects can diminished with time. The hand stinging, however, is new.

    Side effects vary from person to person. Many people, including myself, have tolerable side effects. The "peripheral neuropathy" is the only side effect I have had that is almost certainly the Ibrance. Having non-detectable levels of estrogen can explain everything else I have experienced on this protocol.

    On a lighter note, I found out today that my cat might have a cavity and needs anesthesia, xrays and possible removal of the tooth. $700. This more than I pay to treat a cavity for my child. I sat him down for a talk about flossing and brushing, but he never does what he is told.

    >Z<

  • AmyQ
    AmyQ Member Posts: 821
    edited May 2016

    Z those darn cats NEVER do as they're told...well serves him right he should lose a tooth. Maybe next time he'll listen