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Faslodex + Pablociclib(Ibrance) treatment combination -

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Comments

  • keetmom
    keetmom Member Posts: 299
    edited January 2016

    I have my first set of scans since diagnosis of stage 4 today, results in 1 week. For most part am feeling pretty good, much better then when diagnosed. And I've gained weight (on low end and lost way to much) in the next 2 weeks, along with my results (on 2-5) my dd who is 13 and on her 6th protocol for brain tumors also scans and gets a port (on 2-3)--on top of it all we close on a new house on 2-10 and are moving in the days after...

    I've been on Faslodex for 5 cycles, just finishing my 4th ibrance. ..my counts have stayed normal. ..I am getting a few mouth sores and tired but otherwise feeling ok,

  • jobur
    jobur Member Posts: 494
    edited January 2016

    Keetsmom, So glad to hear you are feeling pretty well on this combo and have put some much need weight back on. You are dealing with so much, I am at a loss for words. Just want to send you some positive energy and cyber hugs from another Wisco gal. Hope your scan today shows you are getting excellent results from this tx.

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

    Oh my gosh keetmom, I have no words to express the compassion I feel for you. No just one but two patients in your family. How in heavens name do some families get double whammied.....I am so sorry to hear that. I hope your new house brings some much needed peace and happiness to all of you and I'll be praying for you that the protocols work for you both.

  • masonsmawmaw
    masonsmawmaw Member Posts: 119
    edited January 2016

    After 4 cycles of Ibrance/Faslodex, I rec'd my PET scan results today. Not only are there "NO new or progressive hypermetabolic tumor identified, there is almost complete resolution of previous skeletal metastasis within my spine, pelvis and femur. Woohoo....I am one happy and blessed woman and I serve a mighty awesome and loving God!!

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

    Fantastic news, masonsmawmaw! So happy for you!

  • jobur
    jobur Member Posts: 494
    edited January 2016

    Masonsmaw, Yea!!! So good to hear your happy news!

  • sonyarizzo
    sonyarizzo Member Posts: 69
    edited January 2016

    Hello, I have been stage four for about 3 years. I am hormone positive so we removed my ovaries and at the time the cancer was only in my bones. I started off on Arimidex...moved to faslodex..then the cancer moved to my liver and I switched to afinitor and aromiasin..after only 4 months on A/A my PET scan was clear but my tumor markers continue to rise to very scary levels. So now I am switching to Ibrance and faslodex. Anyone here make the switch from A/A to Ibrance/faslodex? I have done faslodex before and besides the fact that it hurts to get the shots, I tolerated it well. I am concerned about the side effects of Ibrance in comparison to afinitor. The only side effects I got from afinitor were tummy ach and tiredness. Is it pretty much the same with Ibrance? Thank yo

  • shelbymarie73
    shelbymarie73 Member Posts: 35
    edited February 2016

    Hiiii, so I am 5 days into Ibrance. I've had really bad heartburn even though I take Nexium daily. My tummy is bloated too. What can I do about that? Very uncomfortable. Ummm, I'm not very hungry but not sure if that's the Ibrance or Faslodex. Speaking of that, worst shots I've ever experienced in my life! Was given in thighs due to new protocol and I was Soooo not prepared for that. I cried and had anxiety. I have an anti-anxiety which did not work. Very painful shots and yaay 2 more in 2weeks! (Insert sarcasm). I had intense nausea Thursday night and sublingual zofran helped that subside. To prevent now I'm taking a compazine before dinner then my Ibrance after. I've slept a lot since Thursday (shot day) but actually feel pretty good today. My thighs aren't as sore too! I see my MO on Wednesday for CBC so we'll see what happens.

    Shelby

  • ninaca
    ninaca Member Posts: 232
    edited February 2016

    Shelby, I think nexium is not recommended with Ibrance. Other antacids are okay but you should check with your pharmacist or oncologist. My stomach issues got resolved when I got put on a lower does, 100 mg. now I'm waiting to see if it is just as effective since I don't have to wait 2 weeks for ANC count to go up, it's less medicine but I take more of it over time.

  • shelbymarie73
    shelbymarie73 Member Posts: 35
    edited February 2016

    yeah Ninaca they told me I could take my Nexium 10 hrs before the Ibrance. The pharmacist did say there was a contraindication but he and my MO said it was ok. I take Celebrex for the bone inflammation which really helps with my hip and low back pain. Nexium is the only thing that has worked with heartburn I'd like to stay on it. It's on my list to talk with my doc about. I'm glad thrower dose is working for you!

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

    shelbymarie, I've found taking my Ibrance earlier in the day -- right after lunch -- has helped with both bloating and sleep issues. I take most of my supplements then at bedtime, to avoid any Ibrance interaction. I also got a tip in the Ibrance FB group about a product called "No Bloat." It's more natural than Gas-X, which is what I had been using, and seems to work pretty well. Not sure if it's in stores, but you can Google it and buy it on-line. You also have to be careful about what you eat, which may vary for different people. I had a rich restaurant meal on Saturday that did me in for 24+ hours with the worst gas and bloating I have ever experienced. I have no idea what ingredient(s) or preservative(s) was in it, but I was so miserable, and it was obviously a reaction to that meal.

    And I've never heard of getting Faslodex shots in the thighs. What "new protocol" are you talking about? Deanna


  • 208sandy
    208sandy Member Posts: 582
    edited February 2016

    I monitor this thread even though Ibrance isn't available in Canada (yet) - I've been on Faslodex for over a year and so far very good results - what "new protocol"????! Not here, not yet, and for me, NOT EVER! Seeing my MO on Wednesday and will ask.....

  • allyannea
    allyannea Member Posts: 5
    edited February 2016

    I too would love to hear about the Faslodex shots to the thighs... I have been on this for 4 years! My rear has some permanent lumps in it. Happy

    Looks like my MO want to add Ibrance to my treatment, as well. He was trying to get me on a clinical trial, but my neutrophils are too low.

  • shelbymarie73
    shelbymarie73 Member Posts: 35
    edited February 2016

    It was explained to me that as of last Monday, recommendations for administering Faslodex shots into the thighs was because it was a bigger muscle with less access to big veins/ arteries and to nerves (I.e. sciatic nerve being an important one) Therefore it is safer. It made sense to me but something I was not prepared for. My nurse said there have been reported cases of the sciatic nerve being hit thus causing the patient to be temporarily paralyzed from that point down. Sorry for the news! If you're use to the shots in your rear end, maybe you can still get em that way!

    I'll look into the No Bloat. Thanks for the tip!

  • jobur
    jobur Member Posts: 494
    edited February 2016

    Shelbymarie,

    I am sorry your shots were so painful and in a surprise locationl. Also sorry if we steered you wrong on taking compazine before your Ibrance. I've definitely had the bad heartburn but not the nausea. I take omeprazole daily, about 6 hours before the Ibrance. When I asked the specialty pharmacist about taking both they said the effect of omeprazole had been studied during one of the clinical trials and it was shown to slow down the absorption of Ibrance in the short term but after a period of hours, the absorption rate was the same. I believe that information came from Pfizer. Others here have been told otherwise and the subject comes up repeatedly.

    I know you are new here, but a new protocol for Fas shots is BIG NEWS! I have had my sciatic nerve hit during shots as have other Fas gals. That's what make this forum so great, we are able to share this stuff with each other so we can ask better questions of our mo's and be more a part of our tx. Thank you so much for sharing this info!

    Hope things go better for you in 2 weeks. Hopefully no new surprises for you. Also hoping some of the Ibrance se's are less next cycle. It seems to go that way for most.

  • naturegirl2
    naturegirl2 Member Posts: 219
    edited February 2016

    Okay, here I am through week two off of Ibrance. This is making me quite nervous as I still get Faslodex shots and they alone are failing. So I took Ibrance for two weeks, had my WBC tested, gran # was 1.7 so I got the okay from my oncol to take third week, which I did. After the 3rd week, I was re-tested and my white blood counts were too low to take Ibrance. Now two weeks today without taking second cycle, I go tomorrow for another WBC test. This is nerve wracking. :(

  • AmyQ
    AmyQ Member Posts: 821
    edited February 2016

    I'm sorry you are having such a difficult time with Ibrance. I don't have any suggestions which might help, just offering hugs and comfort that you improve to the point you can get back on Ibrance.

    Good luck to you Naturegirl -


    Amy

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

    naturegirl, your experience sounds very common and not concerning at this point. You were able to take Ibrance the full 3 weeks, right? My counts are always too low to restart on Day 28, but they pop right back up in the next few days so consistently that I don't even get retested anymore -- just wait another 4 or 5 days and restart. Hoping that will be your situation too! Deanna

  • naturegirl2
    naturegirl2 Member Posts: 219
    edited February 2016

    Thanks AmyQ

    Deanna, yes, I was able to take Ibrance for three weeks. Then I had the fourth week off then had WBC tested, and it was too low. Had to stay of Ibrance at that point. The fifth week has passed and today I am having WBC to see if I can get back on Ibrance. So, I was on Ibrance for three weeks, off for two weeks and will see today after I have lab if I can return on Ibrance.

  • naturegirl2
    naturegirl2 Member Posts: 219
    edited February 2016

    Okay, had my lab work done today to see if I could resume Ibrance for my second month. My lab work showed WBC-3.92 and my gran# is 1.6. I can now start my second month of Ibrance tonight. Yeah! So tonight, I will be on day 1, first week, of a three week cycle, but after two weeks I once again will have WBC tested. I feel relieved that I can now have my combination hopefully doing what needs to do. Thanks for everyone's help!

  • lalady1
    lalady1 Member Posts: 530
    edited February 2016

    Congrats Naturegirl! I'm headed to onc tomorrow for fas shots and round 2 of Ibrance. My SE of daily bloody noses, fatigue and hair loss are too much - will ask onc about lowering dose to 100mg. I feel like a nasal blood bank of O+. ugh

  • 208sandy
    208sandy Member Posts: 582
    edited February 2016

    Had my Fas shots today and no they aren't given in the thigh - news to my cancer clinic here in Canada - also not on Faslodex site - sorry but I wouldn't want them on the thigh - so far no one has hit my sciatic nerve - nurses are very careful and well-trained but I did have one who was a little heavy handed - she gave the shot too fast.

  • shelbymarie73
    shelbymarie73 Member Posts: 35
    edited February 2016

    208Sandy-glad to hear your shots today did not have to change body parts! I learned from MO today he read that several outpatient infusion centers in CA (while I live in Northen NV. We have 4 outpatient infusion centers affiliated with hospitals in a 50 mile radius) were changing to IM thigh administration. However, some were not including the local competitor of my infusion center. In fact, my friend who has been getting Fas shots for several months was very surprised to hear of my experience but even more surprised when she went in for hers then being told about the recommend thigh change. Maybe it's just my infusion centers protocol? IDK the answer but not looking forward to next week. Hoping I'll "get used to it" over time.

    Anyway, CBC check today after 6 days and WBC was 4.5, ANC 3.2 and platelets 193. Don't mind those #'s at all! CBC check again, same day and time. Gums are feeling sensitive though and I'm sleeping a lot. Trying to eat smaller, more frequent meals which seems to have helped with the tummy bloating. Because I'm sleeping so much, can't take my Nexium 10 before, so I've switch to 150mgs of Zantac an hour before.so far so good!

    On another note, I've been experiencing some significant low back and right rib pain. Went for xrays to determine if I have fractures. I'm looking at radiation. First time ever for pain. Hopefully this new combo will start working asap cuz I HATE radiation. :(

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

    shelby, I wonder if your pain could be from tumor flares from the Faslodex + Ibrance? Are you doing any pain meds? Also, as you may know, x-rays may not pick up everything going on with bone mets. You may need an MRI if you truly suspect a possible fracture or other significant change.

  • AmyQ
    AmyQ Member Posts: 821
    edited February 2016

    I think I read somewhere that blood clots could be a rare SE of Fas/Ibr - if so, how is it diagnosed and treated? Is it urgent? I have a dull ache in my calf and feel a lump the size of Hot Tamales which came on this morning. Just checking with your vast wealth of knowledge. I'll of course, check with my onc in the morning.

    Thanks!

    Amy

  • lalady1
    lalady1 Member Posts: 530
    edited February 2016

    Back from onc - RBC crashed so will get blood transfusion tomorrow. ugh Onc is not lowering dose of Ibrance (the culprit) but adding Xgeva with next Fas shot in 4 weeks. Have any of you ladies needed a transfusion? Nervous.


  • shelbymarie73
    shelbymarie73 Member Posts: 35
    edited February 2016

    dlb823- yes, I'm on pain meds and have had the low back pain since Dec. Didn't start Faslodex/Ibrance until last week. Seeing radiation oncologist next week to discuss radiation for pain. She may do an mri. Still waiting to find out if frx. I didn't want to go to hospital to pick up report and my onc hasn't called yet. We'll see!

  • keetmom
    keetmom Member Posts: 299
    edited February 2016

    Staying the course..no progression.... The mets aren't any smaller..but we will take it..

    Dd's tumors were stable, her shunt us failing again.we are hoping we can be moved before we fix it. We move in 1 week..

    I will never again schedule both scans same week...

  • shelbymarie73
    shelbymarie73 Member Posts: 35
    edited February 2016

    hi! CBC check today after 14 days on Ibrance. Cell count drop low in 5 days since last CBC. ANC 1.2, whites 1.5, platelets 143. All good to continue with 3Adweek. Getting 2nd loading dose of Faslodex shots on Thursday. Ugh... :(

    My gums started bleeding the other night while brushing. Know it's an SE. I use the Doterra toothpaste in the morning and a water pick which feels really good. Feels like a massage for my gums! Lol Ive started the dry cough too. Realy more annoying and makes my left rib removal scar tissue sore more than anything. Also, I've been sleeping more but no other SE's to report.

    No frx of rib or low back compression frx. But seeing rad onc later this week to discuss radiation.

    Naturegirl- hope this information is what you were looking for!

    Thanx! Shelby

  • naturegirl2
    naturegirl2 Member Posts: 219
    edited February 2016

    hi Shelby, thanks for your info. Good that you can continue on your third week of taking Ibrance. I think it's good that you told us your SE's. Sorry you have them though. We can be on the lookout for similar/same SE's if that does happen. Good luck. Let us know how you do on your next CBC scheduled in two weeks right?

    I'm holding my own at this time. I'm beginning my second week of Ibrance on my second cycle/month. Next week I go in for my CBC to see if I can continue on my third week.

    keetmom, good you are having no progression at this time. Well done.


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