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Faslodex + Pablociclib(Ibrance) treatment combination -

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  • HLB
    HLB Member Posts: 740
    edited January 2018
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    Here is what it says; bilateral buttock subcutaneous fat stranding with mildly increased FDG avidity, injection granulomas.

  • jamiemarie
    jamiemarie Member Posts: 51
    edited January 2018
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    HLB, your comments on running made me giggle. Thanks for the smile this morning! :

  • azs40
    azs40 Member Posts: 45
    edited January 2018
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    Hi everyone.

    I'm on Ibrance/Faslodex combo. Does anyone get significant joint pain after Faslodex/Xgeva shots? Mine is mostly in my legs, and I feel a little "flu-ish" - but this has been the case for at least the last two cycles. It eventually goes away, but wanted to know if anyone shares this SE?

  • LisaL1005
    LisaL1005 Member Posts: 2
    edited January 2018
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    Hi all,

    I just started a clinical trial with faslodex, ibrance and immunotherapy. The faslodex shots (2) HURT for 2 days and I've taken ibrance before (extreme fatigue the worst side effect).

  • zarovka
    zarovka Member Posts: 2,959
    edited January 2018
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    Hi Lisa. What trial? Very interested in how you do.

    >Z<

  • Gumdoctor
    Gumdoctor Member Posts: 618
    edited February 2018
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    Hello All,

    I am pretty new here....

    Please allow me to thank everyone here for your generosity in sharing your time and experiences with all of us. I was terrified when I went for my first Fas injections. But I was as prepared as I could be from reading here...I knew exactly what to look for and ask for.

    Thank Heaven, the nurses knew exactly what they were supposed to do. I decided to have both sides done at the same time to just get it over with. It hurt, even tho they followed all the protocols (warmed, slow injections, as hi as possible, take pressure off the muscles by leaning into chair, etc.). I hurt for 3 days and felt like I had been kicked really hard or beaten up in the alley.

    Good News here --》2nd injection was 3 days ago. 2 different nurses injected at same time. It actually hurt more this time than the 1st time but I went home and took Tylenol right away. I napped and when I got up, I felt 1/10th of what I felt the first time. On day 2, I felt 1/10 pain and it has remained the same since. It feels more like I went to the gym and had a good glute workout. Don't we wish!!!

    WBC count was down but at the bottom limit. MO said I can finish first Ibrance cycle and start 2nd cycle on time.

    I am learning to appreciate what ever little successes I can find on this journey. I believe this is a little tiny success.

    Hoping for little tiny successes for each of us in the days and weeks to come.


    Warmly,

    V

  • zarovka
    zarovka Member Posts: 2,959
    edited February 2018
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    Welcome Gum Doctor. I am glad you have a good infusion center. Two nurses! The option to get the shots on separate days!I got my second shot last Friday and I had to beg them to find a place I could like down. I can't possibly take these shots standing up and they were like "Lie down? What does that mean?" In the end I got them to figure something out. I am not a retiring personality.

    >Z<

  • Liwi
    Liwi Member Posts: 249
    edited February 2018
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    Gumdoctor - the nurses where I get my injections also do both sides at same time. I like getting it over with but have noticed that the pain level can be different on either side because of technique of the nurses. So far hasn’t been too bad. I try to walk a bit after the injections.

    One strange side effect I’ve had twice is a huge drop in blood pressure almost immediately after the injection. The first time they gave me IV fluids, the second time I waited at the infusion center and drank water and a protein drink for about 45 minutes until it came back up. My blood pressure runs on the low side anyway but these drops scared me. Now I try to eat and get lots of fluid before the injection.


  • susaninsf
    susaninsf Member Posts: 1,099
    edited February 2018
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    I've been on Fas + Ibrance for 16 cycles now but each cycle, my neutrophils are never high enough to get back on after a week off (They need my neutrophils to be over 1). I'm supposed to be on a 3 weeks on, 1 week off cycle but I'm usually really 3 week on, 10 days off.

    Is anyone on a different schedule? When I was on Xeloda, I switched to a 1 week on/1 week off schedule and that worked very well for over two years. I wonder if that schedule would work for Fas+I as well.

    Hugs, Susan

  • Liwi
    Liwi Member Posts: 249
    edited February 2018
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    My schedule is 100mg Ibrance, 18 days on then 10 days off. My neutrophils were too low with 125mg. They were still too low when I did 21 days with 100 mg so munch MO changed me t 18 days.

  • Gumdoctor
    Gumdoctor Member Posts: 618
    edited February 2018
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    Zarovka,

    Thank you for the reply. Yes I am blessed to be getting all my tx at a great place, one of the 27 NCCN facilities in the country. They are not perfect, as I have posted in another thread (communication challenges), but I believe I am getting the best care available. There are multiple nurses in the lab doing blood draws and now the Fas injections. They all have been amazing and tuned into what I (and all patients) am going through.

    Did you recently change to a new facility or have the nurses changed out where you have been going for some time? It surprises me they would not understand your reasonabke request to lie down...


    Warmly,

    V

  • Gumdoctor
    Gumdoctor Member Posts: 618
    edited February 2018
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    Liwi,

    Thank you for the reply. Yes I totally understand your concern with significant BP drop. Very glad to hear they responded immediately to help you and you are figuring out how to make things better. Are there other situations where your BP drops like that? Just wondering what the cause might be.

    Warmly,

    V

  • MAW
    MAW Member Posts: 4
    edited February 2018
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    Hello everyone,

    Long time, no post... things are going well 2 years into this combination. Quick easy question, the shots leave medium size knots in my glutes. Any suggestions to lesson them. I have tried heating pad which makes them feel better, warm baths which helps too, recently CBD oil which also helps. But wondering if anyone does something right after the shots to prevent the shots from forming these lumps in the first place.

    Thanks!

  • Gumdoctor
    Gumdoctor Member Posts: 618
    edited February 2018
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    MAW,

    Nice to meet you. I a newbie. Just finished my 1st cycle. Congratulations on your amazing 2 yrs. WOW!!!

    I have so little experience, I cannot help with those knots...someone here will chime in.


    Warmly,

    V

  • 50sgirl
    50sgirl Member Posts: 2,071
    edited February 2018
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    MAW, I vigorously rub/massage the areas of the shots for several minutes after the injections. I sometimes laugh as I walk into the waiting room as I am rubbing my rear since I can imagine what people there are thinking. I have no idea if that will help you, but the massaging along with a brisk walk seems to help my body get the gloopy injections moving through my body. I, too, have found that heat helps. Good luck.

    Hugs and prayers from, Lynne


  • Liwi
    Liwi Member Posts: 249
    edited February 2018
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    Gumdoctor that’s a good question on other blood pressure drop instances. I have had similar symptoms but not in a place where I thought or had access to measure it. I think it may have been partly a reaction to stress. Also possibly dehydration. I need to start logging incidents to cover with my primary care physician at me next physical.
  • Gumdoctor
    Gumdoctor Member Posts: 618
    edited February 2018
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    Liwi - That sounds like a great plan.

    I am a dental specialist and have had patients with similar reactions to our routine injections and localized surgeries I do.


    Warmly, V

  • Gumdoctor
    Gumdoctor Member Posts: 618
    edited February 2018
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    Hi All,

    Just want to report I finished my FIRST cycle of Fas/Ibrance today. I am so very grateful to have the opportunity to take it and see what it will do.

    Since some have been talking about Ibrance price, you might find it interesting to know the charge on mine was $13,000+ for one month supply...another reason to be grateful...my insurance is covering the cost...


    Warmly, V

  • zarovka
    zarovka Member Posts: 2,959
    edited February 2018
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    MAW - pleasure to meet you indeed.

    GumDoc - I am in the process of changing facilities but still at my original local excuse for a cancer center for the moment. I figured they couldn't mess up a faslodex shot . They are a lot closer so I thought I would stick with them through the loading sequence. Honestly, they don't have anywhere for a patient to lie down to get a shot in the posterior. To me it seems important for the butt to be relaxed for this shot. I am light headed from a having a liver full of mets and radiation and everything that a cancer patient might have going on. I am not fond of foot long needles either. I couldn't believe they had nowhere for me to lie down.

    >Z<

  • Gumdoctor
    Gumdoctor Member Posts: 618
    edited February 2018
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    Z -I cannot even imagine your having to deal with this. I hope you will find a much better situation when you switch.

    Sending you all the care and concern you should be getting from your oncology support team.


    Warmly, V

  • Bluebird-DE
    Bluebird-DE Member Posts: 1,233
    edited February 2018
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    Z - some do lie down now. But the ongoing practice has been to relax the rump by holding that foot off the ground. Not ideal by any means. And muscles are still tensed. I leaned over a chair and stood on one foot. Also warmed the vials in my armpits before injections. Also rubbed spots afterwards, then heat in car seat on way home.

  • zarovka
    zarovka Member Posts: 2,959
    edited February 2018
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    I just can't do the stand on one leg thing because i am light headed these days. I also have a medical phobia, or perhaps a very reasonable fear, of foot long needles. I can't believe I am the only cancer patient in the population they serve with this issue.

    >Z<

  • susaninsf
    susaninsf Member Posts: 1,099
    edited February 2018
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    I always lie face down on a bed. I also warm up the medicine in my underarms. They need to be quite warm to be injected easily. Sometimes the nurse massages the spot after the injection. I'm sure it helps but I'm often so eager to get out of there I don't remember to do it myself.

    Depending on the nurse I get, the process can be easy or difficult. One nurse refused to give me the medicine to warm up myself. She said I wasn't allowed to touch it. Most are very kind and knowledgable.

    Liwi, Thanks for replying about your reduced dosing schedule. I will speak to my MO about it. I'm on a trial so may not have much flexibility.

    Hugs, Susan

  • JoynerL
    JoynerL Member Posts: 1,392
    edited February 2018
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    Z, I'm surprised that your needles are so long. I do warm mine under my armpits, and they appear to be generally of relatively normal length.

    I have felt light-headed after my last two sets of shots. I'm going to ask my nurse to check my blood pressure to see if it drops.

    Gumdoctor, congratulations on completing your first course of Ibrance/Fas! I'm headed in for my 14th month of Fas and start cycle 14 of Ibrance on Thursday.

    Hugs to all-


  • zarovka
    zarovka Member Posts: 2,959
    edited February 2018
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    They may actually not be foot long. That may be my perception. Scared of needles.

    >Z<

  • JoynerL
    JoynerL Member Posts: 1,392
    edited February 2018
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    WELL, Z.....just had my 14th cycle of Fas shots today (maybe 15th if you count the loading dose) and studied (sort of) those needles. They ARE long! My nurse told me that she had been hiding them from my view, even though I sometimes warm them under my arms. Not sure whether they're 12" or not, but they're long! I don't know why they didn't seem so before. I was remembering them as not as big as they are.

    In any case, the shots weren't bad today. I do the 'standing with weight off the "shot" side with the non-weight-bearing shot-side foot crossed behind the weigh-bearing foot' plan. Seems to work for me. I rub the shot spots vigorously after she's done and walk, also vigorously, as soon as possible.

  • Liwi
    Liwi Member Posts: 249
    edited February 2018
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    My nurses also hide them from me probably best as I also have problems with needles. I was a bit more sore on one side with my shots last week. I went walking after and that seems to help. I drank a couple of high protein Ensures in addition to water in the morning shortly before the shot and blood draw. I didn’t feel lightheaded this time and I didn’t have a problem with my veins.
  • zarovka
    zarovka Member Posts: 2,959
    edited February 2018
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    heheheh. we are tough.

    >Z<

  • JoynerL
    JoynerL Member Posts: 1,392
    edited March 2018
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    Is anyone else getting odd ridges in their nails? I haven't put polish on my nails in years, but they were in good, basic condition when I started Ibrance/Faslodex 14 months ago. Also, any suggestions for addressing this? Any sort off oil, etc? Thanks!

    image

  • susaninsf
    susaninsf Member Posts: 1,099
    edited March 2018
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    I have that too but never thought about it being linked to Ibrance/Faslodex!