Ibrance (Palbociclib)
Comments
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Finally was able to start cycle 2 after about a 3 week break. I also struggled with the neutrophil count which went from 0.8 (at the end of first 3 week on the meds), 0.4 (the week after), then 0.9 (as of mid last week). I think MO assumes about by now, I should be back up to 1+.
During the last week, I have been taking herbal medicine to help with the count. I know many western doctors are against taking alternative medicine. But, personally, I find that I feel much better when taking it on the week off. My herbal doctor used to work in the hospital in China and says all the patients there would get a combination of western and Chinese medicine. And when it comes to blood count, all the patients typically do very well. Not sure if any of you have tried alternatives medicine while taking Ibrance? Any oncologist supporting it?
I guess for us newbies, we have to figure out a dosage that works for our bodies. I am thankful to hear all the success stories of people taking the meds for years, maintaining a stable disease, shrinking tumors and living normal lives. Your messages are like beams of sunshine that peak through a cloudy sky! With all these uncertainties, we can only hang on to hope....hoping that tomorrow will be better than today!
Prayers and hugs to all!
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Just dropping by to say hello to all the old timers and welcome the newbies and give you all my good news. I was on 125 mg of Ibrance for about 21 cycles with a few days off on occasion. My counts were ok but the fatigue for me was awful and then one day back in August I had a second fainting spell and my DH insisted on my going to the ER. Nothing dramatic showed up but since we were getting ready to take our trip to Italy, my MO said to just stop the Ibrance for awhile and depend on only letrozole. I was expecting to resume Ibrance on our return but the MO said to just stay on letrozole for now. Well, here we are 7 months later and I'm still using only letrozole and my latest blood work shows below range tumor markers and best of all, the CT scan with contrast shows more shrinkage of the tumor in my lung and some nodes and others are stable.
So, I guess I'm telling you this so that those of you who need a break, the letrozole is still working to stop the cancer so don't worry too much. I realize that this may not be an option for a lot of you since my MO believes my cancer is very slow growing because it didn't come back as mets until 25 years after the first bout in early 1991. But, I hope this gives you something to hang onto. I fully expect my cancer will start growing again and will probably go back to Ibrance with Faslodex instead of the letrozole but I'm sure enjoying feeling halfway good again. The letrozole is still giving me lots of SE's like joint pain and dryness "everywhere". However, I think the worst SE is the brain thing. I can't remember "s--t"!!! You know, stuff!
If I didn't write down every pill I put in my mouth the minute I took it, I would take it again 5 min later. Wishing everyone the best of luck with this drug, hang in there, it does work!! Sending prayers for all and for a cure for this awful beast.
Faith (in the future).
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Faith, thank you for the good news and the update. I am considering a trip to Bali, Indonesia, in August. Of course much can happen between now and then, but you give me some hope. I will mention this to my onc when I see her on the 6th. I do not know whether she will feel it is too much of a risk as the flight is very long and medical help may be sketchy. I can dream!
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Fantastic news, Faith!!!!
Here's hoping your cancer is the stupidest, slowest thing in recorded science!!
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Faith, that is so wonderful to hear. The prayers we prayed for you were answered just the way we asked them! The bonus of that is that you give everyone hope that doing this in a way that has no clinical trial to back it up can still be the right plan for a person. I remember the joint pain from Femara and I can't remember if you said you take Turmeric. I take it with the Arimidex (also an AI like Femara) and don't have nearly the discomfort I did with F. I pray that your life is good and I thank you for the encouragement of your happy story.
I hope none of you feel like failures because Ibrance hasn't proven to be the right medicine for you at this time. Perhaps one of the new ones will work better for you. That is what I will hope and pray for.
Love from PatgMc
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I don't know what I would do without this forum - when I read about everyone's struggles, my heart just hurts for you all. Praying peace in the midst of the pain, worry, and loneliness.
Heat or ice for hip joint pain
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I don’t post much but come here to read everyone’s posts and admire those of you who are doing so well on Ibrance. I’m waiting to start cycle 13 of Ibrance/Aimirdex. Started at 125 level and now down to 75 due to low blood counts. I’ve been off Ibrance for almost a month due to surgery for a growth in my uterus which was benign. I fell last Thursday and fractured my left fibula below the knee currently in a splint and on crutches and can’t put any weight on that leg. I see my MO on Wednesday and was wondering if I’ll start back on Ibrance or wait to give it sometime to heal? Has anyone broken a bone while on Ibrance? Any problems or concerns?
Terrij
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I don't post much but come here to read everyone's posts and admire those of you who are doing so well on Ibrance. I'm waiting to start cycle 13 of Ibrance/Aimirdex. Started at 125 level and now down to 75 due to low blood counts. I've been off Ibrance for almost a month due to surgery for a growth in my uterus which was benign. I fell last Thursday and fractured my left fibula below the knee currently in a splint and on crutches and can't put any weight on that leg. I see my MO on Wednesday and was wondering if I'll start back on Ibrance or wait to give it sometime to heal. Has anyone broken a bone while on Ibrance? Any problems or concerns?
Terrijo
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candy678, it is not your fault that your white count drops too low. You have no control over that. You should not feel like a failure. Sometimes I think that MO's should start patients at 75 mg and work up instead of the other way around. (This is a theory of mine developed while awake in the middle of the night when most theories are born.) Maybe the 125 mg is too much of a shock to the system and it is hard to recover.
Faith, so happy for your news. Just an AI would be nice for some but my se comes from that side. I wish I could just take Ibrance. It seems to treat me well. But, of course, it doesn't work without the AI.
TerriJo, do you have osteoporosis? If so, do you take anything for it? Many of us get Xgeva shots monthly or every three months to combat the bone loss caused by the AI's like letrozole. It is supposed to lessen your risk of SRE (skeletal related events, my favorite acronym of all time) like fractures. I've never heard of Ibrance being linked to fractures. Wow, you've really been hit. Glad the growth was benign. Still, that was something else to get through. And now the fracture and loss of mobility. So difficult. I deem that should be enough for you for a while.
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jaycee49 - as far as I know I don't have osteoporosis (mom had it and now older sister does) - had a dexa scan last year and everything was normal. It wouldn't be so bad but the weather here has been in the low 50's, sunny and I'm want to be outside so bad, but for now my skill with crutches is not allowing that. I will be off work for awhile since I work partime and am on my feet the whole time - work in a school cafeteria. I know that Ibrance didn't cause this, just my natural grace did. I just was wondering about starting back up on the Ibrance or if I should wait another cycle. Any thoughts would be appreciated. I do see my MO tomorrow.
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Tomorrow I see my oncologist after beginning ibrance (125 mg) on the 21st of this month. I have been on exemestane since November 2016. Now that the breast cancer has metastasized to my bones, I have began ibrance and will also start Xgeva shots soon. It was recommended by someone in my breast cancer support group to drink a small cup of almond milk to coat my stomach before taking the exemestane and ibance which I take together with my breakfast. So far, I have not experienced any digestive issues. Also, my daughter had provided me with lots of ginger/ turmeric/ peppermint /chamomile teas They prevented nausea when I had my many chemo and radiation treatments in 2015 and 2016.
Also, I pray and seek the blessings of my Lord and Savior Jesus Christ over my meds as well as my food. My anxiety of the "what if's" are minimized through prayer. I have also decided to continue as must as possible my silver sneaker exercise classes three days a week.
I remember reading an article in Cure Magazine about the importance of exercising during chemo care to develop energy, mental focus, and increase circulation in the body. Like many of you, I didn't expect at the age of 69 to have a reoccurrence within 3 years; yet, I knew that I was in a high risk category.
Stay encouraged and I hope my sharing may provide you some tid-bits of ideas for our ibrance/aromatase inhibitor journey to treat metastatic breast cancer. My oncologist said there is no cure, but the disease is manageable. I consider my meds to be one, but not all of the manageable components.
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Thanks to those who chimed in having dizziness / vertigo / nausea in their off weeks etc. This week has been rough! Appreciate hearing that what I'm experiencing is "Ibrance normal". Sorry to hear there are others having such crappy SEs too. And so happy to hear of others sailing through without them too! It's amazing how different every body is.
I just completed my 1 week off after cycle 4 and my neutrophils are artificially high (5.3) thanks to a few Grastofil shots... But how I'm feeling physically is not in line with high counts at all. This cycle has kicked my ass so hard. The exhaustion is unreal. Napping 2-3 hours every day the last week plus 8-9 hours sleep at night. I'm 34. This is not acceptable to me.
As such, MO has recommended a second week off to recover. She feels we have been pushing too hard to get through the cycles with Grastofil. I kinda knew it couldn't keep going on that way (concern for dependency of the shots etc) but they sure helped to keep my counts up and wish that could just be the way we could do this without repercussions.
On that note... for those experiencing low neutrophils... Mine suffer greatly on Ibrance. You're not alone. First cycle I required nearly a 5 week break to recover and get over 1.0. It hits me hard. I'm on 100mg last three cycles and after 7 days on my counts dip under 1.0 every time and we've been getting me through with the Grastofil injections (not the norm). We're talking about doing 100mg 3 weeks on and 2 weeks off now. And after that going to 75mg if I still can't tolerate.
Night time theories here too: I am convinced that our dose should be done based on our weight. Like chemo.
Hugs to all.
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Ashlyn - I like the idea of two weeks off. I’ve also been really tired this cycle probably compounded because I have a sinus infection, my second one in past three months. I may just take two weeks instead of my scheduled 10 daydbefore restarting in March because I will be on vacation I really don’t want to be feeling bad while away.
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I received good news today from my onc. My PET scan results from yesterday show no cancer activity anywhere except in my original lymph node that continues to shrink and improve. I am overwhelmed with this news, and praise my God who is walking with me every step of the way. I will see my onc on the 6th to discuss it all.
In the meantime, I have a Zometa infusion tomorrow and an appointment to figure out why my hand hurts so bad. No one explained this emotional roller coaster to me when I started Ibrance 21 months ago. I have a deep respect for all of you who are battling this disease. With all of the highs and lows, you deserve a golden crown!
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IntoLight, I'm so glad I checked in here tonight to read your wonderful news. I pray for you every day and it thrills me to see our prayers answered in such an amazing way. I'm sorry about your hand. I had lots of difficulty with my right hand while on Femara....right hand, left leg and the bottoms of my feet. Within two months of stopping, the pain was gone from all of them. I was afraid I'd have the same problems taking Arimidex this time but I've taken Turmeric as well and so far, so good. I know there are some places on the Internet that warn against Turmeric and Ibrance but I've had great results with pretty much no cancer activity. We are truly blessed and I pray that everyone else gets the same kind of results.
Sleep tight,
PatgMc
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Well, so much for thinking my body had got itself on course for a 3 week on, 1 week off protocol of Ibrance. It has reverted to needing a two week break. However, although it MIGHT mean I'm not getting as much treatment on this protocol, I'm hoping it also means the side effects will be more manageable again. It's so great to feel well so this has given me another week to look forward to wellness.
Love and hugs to everyone experiencing difficulties. I'm a bit behind with posts.
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Candy, you are not a failure for not tolerating the drug. All of our bodies are different... you do what works for your body. It takes a bit of trial and error... I know what you mean though, sometimes I'll feel like I should be stronger or somehow "will" my body to do better .. be better.
Intothelight and Faith.. yeah!! Thanks for sharing your awesome news.. love to hear about it.
My onc reduced my ibrance from 125 to 100 and I tolerate it so much better.
I know I know.. i need to exercise... maybe with the warmer weather
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Hi IntoLight, so happy to hear your good news. May I ask after how many cycles did ibrance shrink your breast tumour, was it 3cm and palpable? I saw your past posts mentioning to be patient with ibrance, would really like to know how long I should wait. I also see that you didn’t have chemo or surgery..
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Intolight, what fantastic news !
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Great news, IntoLight. We are together with cycles on Ibrance (me 22, you 21, so almost) and on scan results. Let's keep it that way. I plan to.
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Hi everyone, just dropping in for a minutethank you for rejoicing in my good results from the CT scan. Seems I can't enjoy it too much as I'm dealing with a terrible stiff neck and the iPad and computer make it worse. PatG, I'm beginning to wonder if you're right and femara could be causing some of this. When I asked my MO about changing he just said they are all alike. I might have to really press the issue. He did tell me that he knew a women who was stage 4 for twenty years just with hormone suppression alone. Sounds good to me.
Cure-ious, I told him about your remark on slow stupid cancer. He agreed and enjoyed hearing it. Thanks for the laugh.
Ladies, I'm sorry I can't address more of you but I need to stop here as my neck is worse by the minute on this stupid iPad,
Praying for everyone,
Love, Faith.
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Intolight and faith840: so happy for your good news!!
Leapfrog: I'm joining you on the 2 weeks off. Was supposed to start cycle 5 on Tuesday but SEs and energy say no. Will likely be moving to 3 on, 2 off in the future.
Candy: I felt the same when my counts weren't recovering and were so low. Everyone is finding their own unique approach to this drug that is so hard on our marrow. I wonder if I am hit harder because of previous chemo also.
Also wanted to share that I previously remarked on my TMs never being elevated in the last 6+ years. But suddenly after starting Ibrance they went up a bit. I was shocked as they've never gone above 21. January 30 my CT showed disease regression and some areas resolved but my markers went from 21 to 37. And this week it's at 42. I'm not concerned because of what ladies have here about possible tumour flare and dead cancer cells. But funny how my MO wouldn't speak to that. She did say that it would be more concerning if they doubled or tripled.
Hugs all
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Faith, I'm amazed at how unaware some doctors are about aromatase inhibitors' side effects. At our Flying Colors support center I met hundreds on these drugs and heard everything from no side effects to women having to use walkers to get around. I saw people stop taking the drugs after their doctors told them their symptoms were not from the AI. Some just kept getting their prescriptions filled and didn't tell the doctor they quit. Others switched from one AI to another and did much better. Some went back to Tamoxifen and did well. I think it's important to remember that your quality of life is worth a little experimenting. I'm praying for better days and a less stiff neck for you, my friend. Love from patgMc
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Jaycee49 and Intolight: I am on cycle 16 Ibrance/Letrozole. Not too far behind you guys. Monitoring you!!
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Hopeful, A tumor was never detected in my breast--the mammogram just showed multiple nodes under my arm-- up to was 3.5 cm--with initial scans showing extensive mets consistent with BC including thyroid, liver, pancreas, stomach, spine, etc. It qualified as BC because of the ER+ PR+ and HER2-. So there was no surgery that would help me. Ibrance/Letrozole was my first treatment, and I have had no change from the 125 mg dosage. My 6-month scan showed my first good reduction in tumor activity.
Hope this helps.
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Hi Ladies, I haven't posted much here but I have followed all of your posts and feel very connected to this special group of incredible women. I wanted to share my good news with you as I know out of everyone - you will understand the incredible relief I feel. Hopefully this positive news will also make others new to iBrance/Fas/Xgeva feel hopeful as well. I have only been on the regimen since September. Last week I got the news that my PET Scan showed no new tumors anywhere, and stable or shrinking tumors for those that were there previously. Yahoo! It really is a miracle. I have to delay my next cycle due to a severe upper respiratory infection. But they aren't worried at all about a delay. I do continue to have back pain, fatigue, some dizziness and other SEs. But honestly I don't care if the medications are working. Hugs to you all.
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LA894, great news! It is good to hear that this is working for some of us and should provide hope for others. I agree that I will put up with the SEs when the meds are working.
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Hi everyone - wanted to share my happy news - made it through cycle 1 with 125Mg Ibrance - got my labs back today and white counts are 4.2 and ANC is 1.8. So thankful even though joint pain slows me down -hope to celebrate by spending time with my grandkids this weekend. Gods blessings on you all.
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That is awesome! I got my results today as well and my counts are soooo low I have to do a cbc next Thursday, then hopefully 2nd cycle of Ibrance next Friday
MO very upbeat, said it can take 3 or more cycles for my body to adjust, so I need to not fuss over the delay. He also said there is not much I can do to boost the neutrophil level, just wait till next bloodwork...oh well!0 -
Leapfrog, why they want to change you from 2 weeks off, if this is working for you? Have you tried every other day and 1 week off? This way you still have Ibrance in your body for 21 days and the blood count maybe not going to drop too much. I am just thinking and since the doctors are guessing, why we can not.
IntoLight and everybody with great results, Congratulations!
Prayers and hugs to all
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