Faslodex + Pablociclib(Ibrance) treatment combination -

13233353738

Comments

  • Maire67
    Maire67 Member Posts: 418
    edited September 2017

    Hi. I am starting out on 75 mg of Ibrance tomorrow. I have had neutropenia problems on chemo prior to this. Bone marrow fibrous. I will have weekly blood tests. Hoping this is enough . Mo told me that at the end of the month I may have to take Neulasta.

    Tonight I am having a nice glass of red and a relaxing dinner with my DH. Maybe I'm nuts but I'm glad to get started. The MO told me to keep moving. I didn't want to laugh since yesterday the back pain was pretty bad. At this point I don't know if it's arthritis from Faslodex or cancer. I will have Faslodex Xgeva at the end of 21 day cycle.

    Wishing you all a peace filled day

    Maire

  • marianelizabeth
    marianelizabeth Member Posts: 1,156
    edited September 2017

    tarheel, I saw your comment on Faslodex. I had my third injection of Faslodex on Wednesday and it was a completely different experience from the first two times. Since we moved from Vancouver to Victoria in late June I have not yet got GP. I found a walk in Dr. Who did the first two injections. Both were terrible experiences and the second one was worse. He refused to read the instructions or listen to me about heating it. Nor had he asked me what was wrong with me. I know I should have reconsidered after the first experience but did need to find a doctor to do the injections. Anyway he injected the cold syringes in just a few seconds and it was extremely painful for several days. I did cancel future appointments and inquired at BCCA my cancer agency in Victoria and they found me a specialist pharmacy where a nurse comes in once a week. The nurse was knowledgeable, took his time warming up the syringes and administered the Faslodex slowly and painlessly. I am still looking for a GP but for $30 a month I will be using this pharmacy.

    I have had no side effects other than an itchy bum both times for a few days afterwards.

  • JFV
    JFV Member Posts: 341
    edited September 2017

    Tarheel, I also have a friend with bone and liver mets. She has taken 75 mg Ibrance for 3 or 4 months, one week on, one week off. Her cancer tumors are lessening.

  • tarheelmichelle
    tarheelmichelle Member Posts: 248
    edited October 2017

    I've been on Ibrance for two weeks and haven't had ANY terrible side effects yet. I had a bad itchy reaction on Day 2. (But not on Day 1, when I took the medicine after a margarita. I rarely drink, but since I didn't have the itchy outbreak then, I joked that maybe I should take a dose with a margarita every time. ;-)! I pre-dosed with Benadryl for about a week, then dropped down to one Benadryl and now no pre-dosing, no itching.

    The low-grade numb-tingly pain from the Faslodex shots continued for two weeks. I'm getting another one today and I dread it. But, after 2 years on Femara, when every bone ached, I'm happy to be less achy. Hoping I can resume some physical activity, even with all my bone mets.

    Wishing all of you on this treatment great success.

  • JFV
    JFV Member Posts: 341
    edited October 2017

    Tarheel good luck as you continue treatment. My reaction to faslodex is different each time. No problem last week. But had miserable pain month before. Hopefully, second shot will be easy

  • tarheelmichelle
    tarheelmichelle Member Posts: 248
    edited October 2017

    Thank you JFV.

    ouch, ouch. The same nurse shot me yesterday with Faslodex, 30 secs each side. I had Claritin in me. When I complained I was still hurting from last week, Nurse asked, "Did you walk around last time?" I said "I was in so much pain from my shots, I couldn't get off the couch, even while taking 200 mg/OxyContin a day." I walked a little more this time. Tried ice. Finally 2 ibuprofen made my backside more tolerable. (I didn't immediately think to take ibuprofen because of bone mets pain issues.)

    WBC below normal after 12 days on Ibrance. Doc pleased no other side effects.

  • JFV
    JFV Member Posts: 341
    edited October 2017

    Tarheel.Hope faslodex pain improves. I get the impression a lot of people have lowered WBC on Ibrance.

  • tarheelmichelle
    tarheelmichelle Member Posts: 248
    edited October 2017

    JFV. Yep, my doc says younger women recover faster from low WBC on Ibrance "And you're a young woman."

    After she left, I thought of all the really, really sick patients my MO has to see. My complaints about a sore rear end must seem so minor.

  • nkb
    nkb Member Posts: 1,561
    edited October 2017

    Tar Heel- it’s much better if they inject it over 1 1/2-2 minutes each side. Also room temperature. I have 7 sets and one nurse gives me painful, purple lumps- she has a faulty technique- not sure what she does. Let’s it drip to the surface? The other 5 nurses I’ve had- no lumps, no purple.

  • marianelizabeth
    marianelizabeth Member Posts: 1,156
    edited October 2017

    Tarheel, someone posted a monograph of large amounts for IM injections and how to give them. Warmed to room temp and 1 to 2 minutes injection time. Last time which was painless, he had me lift my foot while leaning over a large lazy boy chair to release the muscles and did do it over a minute each side. Painless and am not afraid for next time which is in a week.

  • tarheelmichelle
    tarheelmichelle Member Posts: 248
    edited October 2017

    My doses are warm (thank heavens for that) and I relax my leg by resting a knee on a chair. The 2 ibuprofen I took late last night helped, and I think I might "pre-dose" before next time with ibuprofen.

    My pain doctor said she thought she had heard of a new oral Faslodex coming out? Anybody heard of such a thing

  • nkb
    nkb Member Posts: 1,561
    edited October 2017

    Tarheel- animal crackers is in a study that is using an oral SERD not yet named. In the past SERDs have not worked as oral or IV drugs. I am so hoping her oral study drug pans out.

  • Lester2017
    Lester2017 Member Posts: 10
    edited October 2017

    Hi All,

    I'm relatively new here, dx in August 2017, stage IV in bones, mostly hips, and in lymph system. Almost finished with my second round of Ibrance @ 100 mg. (Had to stop the 150 dosage, esophagus issues.)

    I've had 3 doses of the Fasladex with minor se. They warm the shots and have me lie down, two nurses give me the injections slowly and at the same time. My next injection is scheduled at a different office, I'm hoping they will follow the same procedures. 😬

    Lester

  • JoynerL
    JoynerL Member Posts: 1,392
    edited October 2017

    Welcome, Lester...we have your back. I wish you a very long journey on Ibrance and Faslodex. I'm on the same regimen and am mid-way through my 9th round with completely stable results so far. Good luck to you and to us all!

  • amarantha
    amarantha Member Posts: 330
    edited October 2017

    Hello ladies. I am glad this thread exists. I will be joining you in the Ibrance and Faslodex treatment on October 30th. Was ten months on Aromasine and Afinitor.

  • HLB
    HLB Member Posts: 740
    edited October 2017

    Hi Lester, I hope you are doing well! I wonder if it's better to get both shots at once. Like maybe it confuses your brain as to which one should hurt and makes the pain not as noticable. When I get a shot at the dentist he grabs my cheek and shakes it really fast and I was amazed that I hardly even felt the shot. That is what he told me, that it confuses the brain about what to focus on.

  • tarheelmichelle
    tarheelmichelle Member Posts: 248
    edited November 2017

    Hey everybody. Want to say thanks for advice on lessening the pain from Faslodex shots. The pain was bad even 3 weeks afterward. Requested a different nurse, and told scheduler that the other nurse giving me shots was rushing, even after I told her to slow down. The scheduler was very nice and said she reported it to nursing supervisor. Today I explained to new nurse that the injection site was close to bone cancer and pain was awful. She made me show her where my bone cancer hurt. (Left hip.) She took her time and the injection was just a bit lower. I’m feeling NO PAIN on either side, 5 hours later.


  • zarovka
    zarovka Member Posts: 2,959
    edited November 2017

    Nice work Michelle.

    >Z<

  • iwillwinthisbattle
    iwillwinthisbattle Member Posts: 42
    edited November 2017

    Just finished with my first round of Ibrance and 3 doses of Faslodex. Tumor markers are already down, but I had to wait an extra 4 days for my white blood count to be high enough to resume the ibrance

  • nkb
    nkb Member Posts: 1,561
    edited November 2017

    I willwingood news! I have to wait an extra week every cycle. Just wanted to comment that my TMs went down the first month and then up again and then down. Scan showed marked improvement and they now are still going down. The up bump was thought to be cancer dying. Since i had heard of that i did not freak out. Just a heads up

  • Lillymillie
    Lillymillie Member Posts: 115
    edited November 2017

    hi, I've been on ibrance/faslodex on 8th cycle, last scan was stable after cycle 6. I had very little side effects so far. Just after my faslodex shot last Wednesday I have had real burny pain in my hip joints. One of my buttocks feels really stingy and tender to touch. Like it is bruised or swollen. Anyone else had these side effects. I did have a couple of glasses of wine over the weekend which probably hasn't helped matters. Just feels awful after very little side effects

  • susaninsf
    susaninsf Member Posts: 1,099
    edited November 2017

    Lillymillie,

    Make sure the medicine is warm before they inject it (I put them in my armpits to warm them up). I also tell them to inject as slowly as possible. Lastly, you have to find a nurse who knows exactly where it should be injected. If they hit a nerve you can have permanent nerve damage. If they hit a blood vessel you will have a bruise and the site my bleed a lot. They should be finding your hip bone and making some measurements before they inject you, not just walk over and stick it anywhere on you butt cheek.

    All advice for next time. This time, I agree that wine is probably best!

    Hugs, Susan

  • Lillymillie
    Lillymillie Member Posts: 115
    edited November 2017

    thanks Susan, the same nurses do my injections each time and do warm up the needle. Have never had any problems so this episode threw me. The burning reminded me of the pain i had in my hip when I was first diagnosed. Let's hope it's just from the injection

  • HLB
    HLB Member Posts: 740
    edited November 2017

    One time the nurse gave my shots way off to the side and I felt it going down the outside of my thighs. Those areas were sore for more than a month. It was the only time that happened and I don't think it even went to the right place. After that I always made them show me the spot they were using before they injected.

  • ninaca
    ninaca Member Posts: 232
    edited December 2017

    Thanks for the article on injection sites Shetland Pony. I used to have hot pads on the injection site before the injection, then tried ice packs instead, now I don't do anything special. Nothing seemed to make a difference. BUTT I do put ice on the site, and or a heating pad after I'm home. I find this can really help with the urge to scratch the whole area which can leave scratch marks, but it feels really good. I'm also slightly allergic to the adhesive on the band-aid so I try to take it off as soon as possible. I'm getting ready for another round Christmas Eve.

  • tarheelmichelle
    tarheelmichelle Member Posts: 248
    edited December 2017

    maybe it’s all luck? My last Faslodex shot was at a different hospital. The nurse warmed up the shots with the hot packs (that they put on my arm sometimes to help with blood draws). I told her I had suffered mightily and of course I had forgotten my Claritin but I was heavily dosed in Benadryl. Anyway, this time the shots didn’t hurt at ALL and I had forgotten about them by the next day. What a welcome change!

    My first 3-month scan after starting Ibrance-Faslodex was no progression. I’ll take it. So far, it’s been the best treatment in terms of side effects. Hope everyone else has good reports, too

  • Lillymillie
    Lillymillie Member Posts: 115
    edited December 2017

    I had a bad shot 2 cycles ago. It felt red raw on my hip, the pain travelled down my leg. Awful for first couple of weeks and lasted a month! My one said that sometimes people get a little bleed after the shot, Internally, which bruises and sits near a nerve. He says it happens 1 in every hundred shots so I was unlucky. I get my nurses to run my syringes under hot water to warm them before they give them to me. No problems any other cycle. Usually just a little uncomfortable after shot for a day or two but never need meds. Great treatment so far keeping me stable. 9 cycles in but due dreaded scans next week!!! Oh my hair has thinned and I have a bald spot at back of head now. I wear a real hair wig though mixed through my natural hair. Hair loss at 6 months unfortunately but I can't complain about anything else

  • cive
    cive Member Posts: 265
    edited January 2018

    My "fanny pack" showed up on my last CT scan!

    Winking

  • 50sgirl
    50sgirl Member Posts: 2,071
    edited January 2018

    Cive, That is interesting. How was it described in the report? Did they know what it was? I wonder what makes them show up on some people. I have scans tomorrow morning, and I am wondering if my fanny pack will show up. After I had my injections last week, I got into the car for a 2 hour ride. I usually rub the areas of the shots after I get them, and then I go for a short walk in hopes of getting that goop circulating throughout my body. I think I am suffering the consequences of those two hours of sitting. Right now I have 2 hard lumps, one on each side. The injections didn't hurt when I got them.I did have a different nurse, but she seemed to do things the right way. Now I can't wait to see the reports.

    Lynne

  • HLB
    HLB Member Posts: 740
    edited January 2018

    I also had the activity in the butt show up on PET. I think it was described as stranding. Now I'm curious and will look it up. Onc didn't even mention it and I assumed it was from the shots. I did have lumps but it wasn't very painful. I did notice one time that the areas hurt when I ran. Not that I run. I think it was raining.