Faslodex + Pablociclib(Ibrance) treatment combination -
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So, I start radiation in 2 weeks. I have a large lesion close to my sacroiliac joint where the overlying cortex has been broken thorugh from the cancer. 10 sessions start as early as next week. MRI this Friday I just hope it will help with the pain.
I stopped Ibracne a couple days early due to a scratchy dry throat, cough, and low fever. A couple days isn't going to make that much of a difference and I see my MO this Friday. My gums are bleeding when I brush my teeth and I had a bloody nose this past Friday, the day after my Fas shots. Oh to be a fly on the wall when that happened.... I was in my LazyBoy when I felt a 'runnyy nose'. My legs hurt so much from the shots I couldn't get up quick enough (stretching those muscles HURTS!) all whilst my finger up nose and the other hand holding my back! *big sigh* thankfully it didn't last very long. I imagine my cell counts are just ridiculously low. But It's my week off! YAAY!
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Shelby, iam not on Ibrance any more duw to elevated liver enzymes. But I still check in as I hope I can return to it later.Plus, I like to check in on a few ladies I got to "know" on the other thread. I had a lot of the same SE's with Ibrance but the pounding heart and shortness of breath really kicked my but. Good luck with the rads and enjoy your week of!
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I go in for WBC this afternoon then wait to hear from my oncol. to see if I can continue to third week of 2nd cycle. In the meantime, I have been having some SE's. About a month ago, my right wrist feels like it goes out of socket when I use it in various positions. The pain is really bad but I manage to place it back in socket. I've been wearing hand/wrist splits since then and it does seem to help, some. I told my oncol. about this and he thinks it's from the Faslodex. Anyone experiencing this? Also, I am having a terrible taste in mouth that started a few days ago. Last night while flossing, I had gum bleed. I'm thinking the WBC is really down but will have to wait till late this evening to find out.
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Naturegirl, I developed painful wrists at some point after starting Faslodex last year. Mine don't dislocate, just very painful when in certain positions. Some days they are really bad, other days I barely notice them. Not sure whether to blame Fas or a lifetime of working with my hands. If this persists for you, it might be worth a trip to an orthopedic doc. Good luck on your blood work & completing cycle 2.
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Hi jobur, sorry you are having pain issues with your wrists as well. Do you do anything special to relieve the pain in your wrists? My oncol. said he thought it was from Faslodex shots. I've now been on Faslodex for a little over one year now. The splints seem to help although I must be careful. I'm one that has used my hands in my career as well and have had carpel tunnel issues way back when but after I retired that settled down. And, my #1 hobby is gardening so I use my hands quite a bit at this time.
Got my WBC results yesterday evening, my WBC was 3.22 and my gran# was 1.4. So I can continue on my third week of Ibrance, second cycle.
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Naturegirl, I have wrist splints too, originally got them for my worn out thumbs, but so far neither has been bad enough to pull them out of the closet. I'm 59 and have enjoyed working with my hands all of my life, so figure some arthritis and pain just comes with the territory. I'm a gardener too! Are you suffering from spring fever yet? I ordered some plants online yesterday, but that little fix only fed my addiction, ha ha!
Your blood work sounds excellent going into week 3! Hope it continues and your se's get less with time.
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I've been on this combo since May 2015, with good results. Yay! Some SE I have noticed are: shortness of breath, occasional rapid heartbeat, muscle twitches. I think the worst is feeling like I have a space heater inside my body that I have no control over! I've also experienced extreme snotty nose in the mornings. Overall this has been pretty tolerable
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Northtexas, I am on Faslodex only, 4th set of shots coming up, and get the rapid heartbeat and breathlessness on occasion as well. I thought it was the Ibrance which I quit but it has persisted. I always feel way better if I get out and do some exercise. the other day I did some rather strenuous snowshoeing with the DH and I was gasping on some uphill stuff. Had to stop and rest every hundred yards or so, but I felt way better after. I also get muscle twitches in my calves and have to remember to pound water. I too am almost 59 and am a jewelry maker and stained glass artisan so my hands have been through the mill! I get very stiff fingers and wrists but so far manageable. jobur, I get how you think buying a few things (like plants or BEADS) will fill that urge and it just fuels the fire! Hahahaha!
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Thanks Deanna! I'm coastal south so been ready for spring and it is upon us! Having 77 degree weather today!
Northtexas-glad to read you have good results in taking this combo! Glad it's been tolerable for you. That shortness of breath has to be frightening though.
artistatheart-will you be going back on Ibrance sometime? Is Faslodex holding back progression and for how long if so? Nice hobby you have in beading! Love the anklet bracelets.
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hello everyone. I'm happy to have found this site as my treatment is with both faslodex and Ibrance.
When I was first diagnosed with stage four in August.2012, I was placed on faslodex monthly, one shot, and aromas in daily. This worked beautifully for over two years when it stopped. I was then placed on Xeloda for six months and the side effects made me feel miserable and then it stopped working. We were going to try Ibrance but the copayment was exorbitant and my onc felt there wasn't time to apply for help, fill out paper work etc. so he strongly urged me to try taxol chemotherapy which I took weekly. It worked, but my most serious side effect besides losing hair was neuropathy in both ankles and fingertips, which I still have. For awhile I was unable to walk without the use of walkers, canes etc. but with the help of pt I'm walking on my own.
I am now on Ibrance and monthly shots of fas. This time two shots. I'm on my third round, but it does effect my wbc so I've been three weeks on and wo weeks off which is fine with me, as the side effects of Ibrance follow me into my first week off. My biggest complaint is tiredness so my onc started me on a regime of b12 shots daily for one week, weekly for a month and then who knows what. After my second round of Ibrance my tumors were tested and had dropped by 100points. I am thrilled.
My only mistake in the first round was I popped a pill without eating first. Just know I suffered unbelievably all nigh t long. Lesson learned!
Im76 years old or will be by this coming Friday. So I guess I'm a tough nut. I hope this treatment keeps working!
Teresa
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PS. I no longer look like my photo as I have almost no hair
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Nice to see this topic in our stage IV. I am the next in line for this drug combo. Nice to learn the FDA just approved the two together. I Should be starting within the next few weeks. Thanks for all the tips. It always helps.
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Welcome Teresa! Hope this combo is effective and relatively easy for you. You are indeed a tough nut, and I am sure you are just as cute without hair!
Welcome to you too MAW, though sorry you have need to be on the stage IV forum. Your timing is excellent to be starting this combo just as the FDA approved it. Glad you have found this thread helpful and hope you will pop back in if you have questions or comments.
Hope all in Ibranceland are having a good day.
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Naturegirl, So far I will not be going back on Ibrance but if my liver enzymes stay stable on the Faslodex for a few cycles I am going to approach her about a lower dose of Ibrance to compliment the Fas. I have a lab for tumor markers on Monday so will find out if those have decreased but don't get a new scan until end of March, first one since starting Faslodex. So don't know yet if it's working......Yep, I love, love, love my hobby! Welcome Tree, You are one tough nut and with that beautiful smile, who needs hair?
Hang in there, the Ibrance SE's seem to lessen over time besides the WBC. Welcome MAW! Just as a side note, I no longer take the Ibrance but still check in to participate and see how it's going with all....0 -
Posted this on the Ibrance 2015 topic/thread and thought it may be welcome here too.
FDA Approves Ibrance Plus Faslodex for Hormone Receptor-Positive Breast Cancer
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thanks for welcoming me.. I hope to be here for awhile. I enjoy reading all of your comments. Helps me a lot. I hope to help you.
Teresa
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Welcome Tree and MAW - I have been using a halo fall (much lighter than a wig) to cover hair thinning from Ibrance - please ask your hairdresser to look into this - no one at my job is the wiser. http://halocouture.com/ I required one blood transfusion after round 2 of Ibrance/fas, but counts are very good now. I start round 3 soon - onc adding Xgeva too. I may ask about some B-12 shots for energy.
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tree, you look GREAT for 76! Wow! And welcome to you, MAW, longterm, lalady.
lalady, glad to hear your counts are back in balance. You and I sound like we started Ibrance around the same time. I will be on my 3rd cycle in a week if my lab is okay. I now have my first mouth sore
since on Ibrance. I called my oncol., and nurse said to use baking soda and water. Anyone know the increments? Also, I have 2 pills left for the third week/second cycle I'm on. Oncol. said to stop the Ibrance so I will have my week off + 2 days if all goes well. Last cycle I had to wait 2 weeks rather than one to re-start Ibrance, 2nd cycle. I go in for my Faslodex shots this Wed. I think I've got those Faslodex down to a science,
, luckily, I do well with this thus far. I see my oncol. one week from Wed. I'll have blood work too so we'll see if my cancer antigen has gone down any.0 -
For mouth sores (while on Afinitor), the ONLY thing that worked for me was triamcinolone dental paste. I had to really bug my MO for a prescription... But it works wonderfully. Just a tiny dab at night on the blossoming sore and in 3 days it's gone. I have a picture of the tube.
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so, I'm off Ibrance for a second week. I got sick on my week off while my cell count was really low (.9) I'm on Levaquin cuz of infection. I start radiation Thursday morning and have my Zoladex and Faslodex shots Thursday afternoon. Then start Ibrance, 2nd cycle, on Sunday. I'll be on Ibrance and XRT together for 5 days. Ibrance wasn't too bad first cycle, hopefully it'll stay that way!
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Tree! Good to "see" you, hair or no! I visit this thread every so often out of curiosity. I am happy to learn that the Ibrance and Faslodex combo is now officially approved and hope this will make it easier for insurance to cover.
Tina
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Tina! Great to see you too. I often go on the fas. Site to catch up on you, Pajam and "Susan". I was sorry to read that she was no longer Ned and is now on Xeloda after Ibrance failed.
I can't believe I tried chemo. Promised myself I wouldn't. I wish I had listened to myself. But today I'm feeling pretty good. I think the b12 shots are working. How are you, Tina
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Tina, Tree, how are you?
Tree, don't second guess yourself over chemo. If there's one thing I've learned over the last year it's that you make the best decision you can at any given moment and don't look back. Maybe Taxol would have been more kind. There's no way to know without giving it a try.
Ladies, I join you tomorrow (I think -- have to go to the pharmacy). The insurance company called to say they approved pabociclib so go with my letrozole and fulvestrant and Xgeva. Druggie here maybe?
I've been taking Faslodex for three years now. First two years NED. Last year a few spots popped up but they haven't grown. Scans last week say they're a little brighter but still haven't grown. However my tumor markers are rising. Fast. So today (after stalling for six months) we pulled the trigger.
I get that I need to take this with food, and maybe dinner is best in order to sleep through any GI distress? Keep antacids and anti-diarrheals around just in case? I'm supposed to go in for blood work in two weeks and to see my onc in four weeks.
Those of you having painful shots, at the top of the most recent Faslodex thread is a list of tips for pain-free shots.
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Pam, I did Ibrance for approx 3 full cycles and I never had any gastro distress. I did take with a full meal after dinner. I had other SE's such as fatigue and a sore mouth for awhile, but nothing too aggravating. I just had to quit because of elevated liver enzymes. will you be staying on both the fulvestrant and letrozole? I hope Ibrance knocks those TM's right back down.
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Naturegirl - we are on the same cycle - just got my first mouth sore, but it went away overnight. I am starting Xgeva next week with my 3rd cycle of Ibrance/fas. Best news this week when I called to reorder Ibrance the $10 Copay was waived because my insurance (UHC) now covers the entire cost due to FDA approval! Pajim - I'm taking Ibrance with dinner since it stays down better. Pain free night to all!
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alley, thanks for the info. and picture of triamcinolone dental paste. My mouth sore lasted one day thankfully. I used baking soda/water combination but will keep this info. handy for future reference.
good luck Shelby with your upcoming treatments. Hope your WBC goes up so you can take second cycle of Ibrance. Keep us posted.
Hi Tina, how is it going? Glad to see you here.
pajim, hoping you do well on Ibrance. Willing you continue to take Faslodex shots with Ibrance?
I take Ibrance usually at the same time each night after dinner. Two hours after that, I'm sleeping in my chair for a bit of a nap, then awake again. I usually do not have problems once I go to bed. Keep us posted pajim.
lalady, glad to read you didn't have to pay the co-pay due to FDA approval. Hopefully that will work for all of us as well.
Went in for my monthly Faslodex shot yesterday. Late yesterday evening, I began with stomach pain on and off. I used a heating pad on my stomach when I went to bed and worked good. Knock on wood, that has resolved itself thankfully. I see my oncol. next Wed. along with having lab work and cancer antigen level count. I won't learn the CA count then because it takes a few days for those results. I'm anxious to see if my CA level has gone down any. Last month it rose to 120; I had been on Ibrance one month at that time.
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Hi All,
Checking in to see how everyone is doing and give an update on progress with Faslodex & Ibrance. Almost two weeks ago I finished my first 21 days of 125 mg Ibrance. As expected my WBC tanked and my MO called to say I was neutropenic advising I stay out of crowds, be diligent with hand washing, take extra precautions to stay away from sick people, etc.
My MO has been monitoring my blood weekly and because the WBC is still low at .8 she said to hold off restarting Ibrance. Unfortunately Monday evening I ended up in the hospital with cellulitis of my right arm with lymphedema. Spent 3 days on IV antibiotics and discharged with oral antibiotics. Today I had another blood draw and finally my WBC improved to 2.1 so MO nurse calls and said MO wants me to restart Ibrance 125mg today.
I'm puzzled why on earth would she recommend that? At the very least why not at a lower dosage? How can she possibly expect a different outcome? I said I'm going to take the weekend to think about but that I am definitely NOT going to restart Ibrance at the same dosage.
So I'm looking for experiences from others - has this happened to you? What did you do? Did a lower dosage work better and was it still effective?
I feel lucky I ended up with only cellulitis. What about pneumonia or a blood infection? Potentially life-threatening illnesses. In this case the cure could kill. I'm not trying to be dramatic, but I am non-compliant right now and looking for others to weigh in on their experiences. Thanks so much for anything you are willing to share.
Amy
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Amy, that sounds awful. You should ask your onc her reasoning. Maybe she feels that your body will get used to the med and react better the second time? I'm grasping at straws, I have no real idea and no experience.
Yes, I'll continue with letrozole, denosumab and fulvestrant. They're mostly working. We're hoping the palbo will be synergistic and boost them. Who knows. The FDA approved the Fulvestrant/Palbo combination. Letrozole is cheap and easy so what the heck.
I took my second pill this evening, with dinner. Maybe after dinner is better? All I can tell so far is that I'm going to need an antacid. Pepcid here I come.
It's funny, my husband is more nervous about this than I am. It's our first "change of treatment". We got complacent. I keep telling him not to borrow trouble -- this drug may be easy. Or it may not.
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Amy, I am no longer on Ibrance but when I was on the 125 mg dose, my first cycle my WBC went to 1.8, took a week off and they rose to 2.1, did the second cycle and WBC stayed at 2.1, took the week off. End of third cycle my WBC was 2.4 and stayed there. I think your body adjusts to that SE as well as some of the others. Although each time by the end of the 3rd week I was EXHAUSTED.
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Thank you for your experience Artist. Maybe that's what I'll find.
Amy
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