Ibrance (Palbociclib)
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chicaogoan, what fun!
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Chicagoan what an adventure! I live in NW Minnesota and we see Northern Lights regularly here along with the moon shining so brightly on the snow that it sometimes looks like dim daylight. It goes without saying there are frozen toes, fingers and noses. It is definitely icy and beautiful, however.
aprilgirl1 my blood is bouncing back, so here we go again. I have been waiting to leave for our Florida place until I got things going on a regular basis with meds and labs. I read somewhere it is a good indication if the ANC drops during the first two cycles. I hope that is true. Florida soon! Yay
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Thanks for the input, ladies! It looks like Il just carry on as long as I’m NEAD. No sense messing with success.
I’m on a two week on two week off cycle so my guess is there isn’t a problem if your break is longer than a week…
Chicagoan- Iceland sounds amazing. Hope you get to see the northern lights! It’s on my bucket list.
So happy to hear about positive scans. Who knew how much joy a test result can provide!
Have a great week
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I'm supposed to start my next cycle of Ibrance tomorrow, but the prescription is held up in never-never land. New insurance can be a pain. I've taken longer breaks when my counts were down so maybe a longer break will be OK this time, too. Not much I can do about it. I've called and messaged both my MO and the specialty pharmacy. Still waiting...
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I will be on Ibrance and Faslodex for 3 years in February and XGEVA I hit the three year mark in October. I recently noticed that after sex I am bleeding just a little bit. I just got over a UTI and they said that there was no blood in that urine sample so I know the 2 things are unrelated. I think it may be a side effect from Ibrance or one of these other drugs causing maybe a thinning of my skin in there and I realize as we age and the medication we are on, it can also make it pretty dry. I had a hysterectomy in 2011 from side effects of Tamoxifen the first time I went through breast cancer so a lot of my "equipment" is not there any longer. I see my MO next week for my routine appointment so I will mention it to him then but I just wondered if anyone else experienced this?
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One of my oncologist said for lubricant use coconut oil. Maybe try that next time to see if you are still bleeding after sex?
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cowgal,
If you think the bleeding is due to abrasion of thin, dry tissues I'd recommend following the vaginal renewal program available from the Women's Touch Sexuality Resource Center in Madison, WI. https://sexualityresources.com/
With the help of GYN doctors they developed a vaginal renewal program that is promoted by GYN and Primary Care physicians in the area. You'll see the link to the program brochure on the first page of their website or here is the direct link: https://sexualityresources.com/wp-content/uploads/...
They sell their recommended products on their site, but you can find the same products elsewhere. I liked Oasis Silk for lubrication and bought it off Amazon. I followed their Vaginal Renewal program after menopause and it worked for me. I have no financial interest in this business.
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Thank you luvdbyhim and weninwi for the responses! I do think it is probably abrasion. All of my skin seems to be dried out from one or more of these medications so it would make sense that it could be something like that and I am 58 and forced into immediate menopause at 47 with the hysterectomy.
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Question about ibrance: I just got my blood work back after my third cycle of 125 mg ibrance. My neutrophils have returned to the normal range. Can this mean it’s not working? I will ask my MO about it too. Thanks.
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believe60 - I did find this study: https://www.nature.com/articles/s41416-020-0967-7
But I had very low ANC on Ibrance. I couldn't tolerate more than 14 days on 125 mg or 100 mg. It took 75 mg before I could finally complete a 21/7 cycle and yet I didn't last long on Ibrance. 🤷And this study included only 196 patients. I'd like to see a larger cohort
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rk2020,
I apologize if I've asked you before (but now forgotten), are you still on Xeloda? If not, how long were you on? What was your experience with side effects? I've been posting on the "All About Xeloda" thread if you prefer to respond there.
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Cowgal - 3 years on Ibrance/fulvestrant is good to hear. Your situation is not, however I agree with the others that it's probably abrasion. Hopefully WeninWi's links can help! I think many of us share with this unpleasant side effect.
WeninWi - great links, thanks for the info!
Believe60 - my blood worked bounced all around so I don't know that it is an indication that it's not working. I think you have an appt tomorrow to review scans and blood tests, I am "in your pocket" for the appt and hope you get good information from your oncologist.
RK2020- how is the clinical trial going? Hope it's going well, appreciate all who join these trials as they help us discover new treatments
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weninwi - I found Xeloda to be the easiest drug I’ve taken. I took good care of my feet slathering them with either Bag Balm, Gold Bond lotion or a 40% urea cream at least twice a day. I also watched my diet for any potential folic acid triggers. This is a controversial topic but I found that certain foods made my feet burn. I wore cushy shoes even indoors. I had a mild case of hand foot syndrome in my feet only. After about 5 cycles or so (14/7) my feet could tolerate more pool time but in Wisconsin that may not be a concern of yours. Lol.
Aprilgirl - Has anyone told you that you are amazing? You are one to keep track of us all and respond. Me, on the other hand, finds it difficult to remember who I wanted to respond to and what I wanted to say. My mind is a sieve these days
I’m still dealing with a lot of nausea and diarrhea on the CDK2 inhibitor but my body seems to be adjusting a bit. And I’m learning how much med to take to control the side effects. I’m on a 4 day getaway to the east coast of Florida right now. Of course, my tummy picked yesterday to really flare up…for no particular reason. No change in diet so ?? My left leg where my femur rod was inserted back in early 2020 has been paining me so I am less and less active these days which has put me in a downward spiral. I have lots of met damage to that left hip/sacrum/femur so I’m just trying to deal with it the best I can.
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rk2020- Sorry to hear about your leg pain and decreased mobility- can someone help with that? ortho or ?
do you have any idea of how well the cdk2 is working? scans soon? how are your labs doing on this drug? does it target the ANC like the ibrance did? I have great hope for this trial and really hope it works for you!
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nkb - My tumor markers are down and my blood labs look the best they have since this MBC ride started in early 2020. I get scanned this Monday and see my MO on Thursday but I’m expecting good results. My track record is that my first scan after starting a new drug goes well. The wheels don’t start to fall off the tracks until the second scan. According to my Guardant test, I have a CCNE amplification which hyperactivates CDK2. Abnormal CCNE is known to promote resistance to CDK4/6 inhibitors and other therapies. This may explain why I do good initially, then quickly progress. I’ll be more impressed if I’m still doing good on this drug6 months from now. 🤞🏻If the cancer stabilizes on this drug I plan to see my orthopedic oncologist about my left hip area. Until then, I’m just going to live with it. I miss walking and dancing. A few weeks back I danced 2 songs at a party. Just 2 songs! And that dang hip is still aggravated. I have the rod screwed in there, lots of damage in the general area from mets and considerable inflammation so it’s difficult to know what is causing the pain.
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RK- this is very encouraging news! thinking about you with your upcoming scan. I forget if you are taking an anti-estrogen of some sort with it?
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nkb - It’s a phase 1 trial and one of the arms includes Fulvestrant. I am taking it as mono therapy. There are a few arms but I honestly don’t know how the other arms are doing. Are they having success or have they been discontinued? I don’t know. You do not have to have a CCNE amplification to qualify for the trial. This amplification just makes me more interesting to the scientists. My oncologist thinks they are close to defining the highest dose(s) tolerable in a human. Now to see if the doses tolerated are effective…
I’m a curious person, a researcher by nature. I read all day about everything you could imagine so I’m finding the clinical trial process intriguing. The drug is a bit rough, especially when they had me on a dose that was double what I’m taking now and one that they have proven to be too strong for humans (yikes).
My apologies to all the Ibrance dancers if I have highjacked your thread. This was my first “home” on BCO and the thread that I feel most comfortable on even after many of my “Ibrance buddies” have moved on. Maybe it’s the introvert in me.Wishing everyone here numerous cycles on Ibrance and few side effects.
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Rk2020 I’m glad the trial is working right now and I’m hopeful 6 months from now you’ll still be benefiting from the treatment
Tanya
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RK2020-Once a dancer, always a dancer. I really like hearing about your trial and am glad you still post here.
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hi all, I'm trying g to catch up here a little and there is too much to reply to all.. 5 weeks ago gigil asked about mouth sores. I took Ibrance for year and had 1 tiny mouthsore for a day or 2 each cycle. I hope you all don't have any.more than that.
More later.
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hi again dancers. I just read back about 6 pages. I'd been a dancer for a year inches beginning. Musta been 2017 or 18. MO only wanted me on it a year. I didnt need more. He said we could add it back later. I think the time has come. I've been on faslodex this whole time. But recently found the lungs with mets that have died off. He says faslodex is controlling it fine. Dont need ibrance. Um I think I'd like it again. He is not the easiest to talk to. But I see PA monthly and she is.
He wanted to wait till tumor markers go up. They haven't. Then I see that he put in my chart that I had some reaction to it. Oh really?!? Like what?
Lanne, I did have pancreatis on ibrance kinda. I'd stopped ibrance to have gallbladder out. Released after procedure and back at hospital 5 hours later with pancreatic. Maybe that's it.
I had few SE while on Ibrance. Hair loss in beginning. No nausea. Low neutrophils once on 125. Will see what PA says on the 10th.
It was good to see some of you still here. Others of you I've seen Round. I hope to get to know you better soon.
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RK2020
Like everyone else, I'm very glad to hear of your success on the trial so far and hope it continues.
I sympathize with your hip pain. I developed debilitating pain in my right hip from an old injury combined with severe arthritis. Had a hip replacement in 2019. Before the replacement I had quite a bit of pain relief from Celebrex. It works by reducing the production of prostaglandins which cause pain. I recently requested a prescription from my MO because of random bone and muscle pain. I am on Kisqali/Fulvestrant/Xgeva and one or more of them are exacerbating the arthritis in my 72 year old bones. Have never had any SEs with Celebrex. The best news is that it is finally off patent and the generic costs a little over $4 a month
Wishing you great results from this trial.
Eleanora
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Hi Ibrancers and former dancers:)
Chicagoan is right, once a dancer (MBC person on Ibrance) always a dancer!
@RK2020 - you are sweet to call me amazing. In general, I have a really good memory. My 86 year old mom does as well, which is frightening and amazing at the same time! I heard or read somewhere on the boards that your recent scan had good results re your trial meds so you are doing well which makes me SO HAPPY!
@Gailmary, thanks for posting and it's great to see that you are also doing well.
I just had my fulvestrant shots and blood work, will wait for blood test results but expect to start cycle 39 or 40 of Ibrance today.
For the past few weeks I have had hip pain in my right hip, mainly when I am lying down to go to sleep. I reached out to Cowgal (who also has hip pain on one side) and my onc who ordered an xray of my hip. Xray showed no abnormalities so it's just the fulvestrant shot or joint pain that many of us are dealing with as a side effect. I am going to ask for celebrex as I also have a lot of joint pain in my wrists/hands/fingers that has come on in the past 3 years. I was relieved that my oncologist ordered the xray fast as I didnt want to wait until my March petscan to have this checked out.
Anyone on Celebrex or arthritis meds? Another med I get to add is a blood pressure med as my bp has crept up to consistently to around 140/90 and sometimes higher. I bought a bp monitor for home so it's not just at the cancer center when my bp is elevated.
@Chicagoan, I will send you a PM about my visit to Chicago next weekend! Can't wait (bought a new, warmer coat!).
@SF-Cakes, haven't seen you post in a while and hope you are doing as well as can be.
Sending love and greetings to all !
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Aprilgirl-Looking forward to seeing you next week!
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I am wondering around Breastcancer.org trying to figure out where I belong. I learned January 3 after 7 years my breast cancer had spread to the pleura of of my right lung. My oncologist don't stage my CA right now but I am assuming it is now considered stage IV. I am still trying to take this all in. I just finished my first cycle of Ibrance and letrozole. I have notice a marked improvement. My cancer has stopped producing fluid in my pleura. I had a bunch of tests and scans and so far it does not appear to have spread anywhere else. I am trying to be optimistic. I was supposed to have knee surgery on January 25 2023 and of course that is on hold now. The meniscus detached from my knee in late July. Hurts to walk more then short distances. I have also been very involved at the gym for the last 6 years working out and lifting. Modified for my knee. Not sure where I am heading from here. Hoping to have the all clear to go back to the gym after I see my internist next week. Sorry if I am all over the place but that is how I feel right now.
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Breutersmom ~
It sounds like you are actually doing a great job of holding it all together for someone diagnosed so recently! Hopefully you get knee arthroscopy (if needed) but because these drugs can give quite a bit of joint pain, I just wanted to point out there is an angiopoeitin booster in clinical trials that stimulates growth of new cartilage when injected into the knee! New drugs are coming along all the time, and not just for MBC...
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curr-ious. Unfortunately with my minicus detached. Knee replacement is my only option. My knee is not very stable. My muscles are strong which is what is getting me through. I am not holding it together all that well. Melt downs are frequent. I do find exercise helps mentaly and keeps me feeling strong. So far my worst side effect is nausea when I eat anything with tomato sauce.
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Brutersmom, I was diagnosed after a pleural effusion cut my breathing in half. The met is at a rib joint and I'm taking the same combo. I just had scans at the 9 month point and it seems to be working. No new mets or problems and the original one seems to be held in check. I hope you'll be able to get your knee fixed before very long. I had a pleural drain for a while, but it worked well enough that it was removed.
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brutersmom- You have found your tribe! The beginning is the hardest but as time goes on, you will adjust. If your emotions start to spiral or you find that you can’t get “out if the sink hole” please say something to your doctor. Many take a pill for depression or anxiety and/or seek counseling. There is no shame in that. I’m glad you are staying as active as your body will allow. It’s really so important both physically and mentally. In the event that your doctor has you stop Ibrance for awhile while you have your knee repaired, don’t let that freak you out. Many of us have had to do that and came out fine. I myself didn’t even start Ibrance until after I had my surgery. I had issues with low ANC so I couldn’t complete a cycle until #5 and my first scan at 3 months still showed improvement. Remember that Letrozole does the heavy lifting. We are here for you. Hugs.
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rk2020 -- thanks for the encouragement. The last 5-6 weeks have been a journey. I feel like I am moving forward and things are getting better. I have a new oncologist this time around and he seems much more knowledgeable, caring, and concerned then the past two I have had. Yes two. I fired the first one. I had no confidence in his ability to treat me. Second one was a little better. He did talk about possibly needing an anti depressant if my mind starts racing again like I did when I took Arimidex the first time around. I have decided that since I probably won't be ready to have the surgery until late spring I will wait until the end of August. When I was in the hospital they told me to postpone it until at least June. I am a summer person. My daughter has a pool and I love being in the water. Won't be as much fun with an aching knee but better then not being able to go in the water at all. i figure that by then they will know how my body and cancer is responding to the meds and whether it is safe to have the surgery.
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