Ibrance (Palbociclib)
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Hang in there Metster Mom, I wish I could answer your question to allay your worries. I think it does take a while to work, more so for some people. You've been on it two more months than me, I thought it was clearly working at first, now notice the mets on my skin have certainly not stopped spreading. Many others here had wonderful improvement after four months. When do you do a new PET scan ? How do your doctors determine if the new drug is working or not ?
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I went on line at MDA website...it is the big cancer hospital in Houston medical center.It took about 3 weeks to get in and lots of collecting scan cd , reports etc but worth it. No charge cuz I had maxed out my insurance copay, deductible, etc.
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Thanks Ladies! I don’t have any scheduled scans coming up and my MO does it based on symptoms, bloodwork, etc. maybe a scan would help settle my anxiety. I also want to be sure to give Ibrance time, as I heard it can even take up to 6 months to start working
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Thank you PatgMc for your hopeful and positive post. I'm a newbie here myself and look for inspiring stories along with support and info. A great community.
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Claudia, so glad you got great news! It's always welcome but especially this time of year.
PatgMc, so sorry you were so sick. I had a bad bout of flu in 2000 and felt like you, too sick to go to the hospital. I can't imagine going through it now, older and immune-compromised. Glad to have you back in the land of the living.
SGB, welcome to 'no-rules' posting. As you can probably tell, this wonderful group offers a completely open forum to air any and all experiences. If you want to enter your diagnosis to tag on to your posts, go to My Profile to the left of the Log In in the upper right. From there, there are 4 tabs. The 2nd is My Diagnoses, the 3rd is My Treatment.
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Dear Ashlyn....I welcome you to our support group on this thread with great love but I wish I didn't have to. I'm so sorry about your progression and your plans for a family going astray when you're so young. We will all be here for you to help you as much as we can so reach out your hand and we will too.
Jaylea...are you saying that your MO says research shows that on the lower, 100mgm dose and several stable scans, better results are shown? I know I'm repeating your words back to you but this is important to me. I'm on my tenth cycle and have had two stable scans and was dropped to the 100mgm dose three cycles ago due to the highest grade (can't remember the number) of neutropenia. I know my MO told me that results are just as good on the lower dose and we're hoping that it will eventually translate into the three weeks on, one week off regime which I haven't so far been able to achieve, always needing two weeks off.
MetsterMom....I think it's different for all of us as to how long it takes for Ibrance to start working. I'm in my tenth cycle and so far have had two scans (as mentioned above already) which are stable, but no regression. I do have a huge amount of mets though. Perhaps it depends on that but I try to just take my tablets and follow instructions and, in between, not worry too much.
I've accepted that this is my life now and I'm as happy as it's possible to be. By that I mean I accept whatever the future is going to bring but in the meantime I'm doing whatever my limitations allow me to do. Tired all the time but I'm used to it now and just go with it and when it gets too much I have a little nap. I only sleep about 6 hours at night but I wake up looking forward to what each day will bring because there's always something good I can find in amongst the hard stuff.
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I am just starting the 100 mg ibrance with 4 pills left in cycle one. For those who have been taking it for a while a few questions....I also had my first thoracic bone radiation in Friday with 9 more to go.
1. Slight chest bone discomfort last couple of days? Radiation caused or musculoskeletal pain already from meds?
2. Hair loss thinning...how common is it?
3. Fatigue...does it get better or just expected all the time and increases with time or levels off.
As I look at symptoms etc on website over time it looks overwhelming. Right now just tir ed with appetite and eating issues due to liver also I guess.
Thanks for the info
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Ashlyn-I am sorry about the derailment of having a family. I was diagnosed the first time at 34 and now 38 and my fiance and I were planning to have a baby and this derailed ours. I am hoping to look into adoption eventually but I am afraid too because I don't know if agencies or what not look into medical.
Pat-OMG I am sorry you had the flu and it sounds terrible. I have my flu shot but I may go ahead and buy face masks asap before I meet with my Onc wed. I gotta go get a pneumonia shot too.
SGB-Welcome! If you need help we are always here!
Meestermom- It depends. I know some of the ladies were talking about how they get constipated and some get the opposite and it depends on you and your body. I am kind of in between sometimes I may need help with a stool softener. Hair thinning I don't know I feel like mine is but I don't know. I am only on 2nd round (will be done today) but I am still tired but if I need a nap I will take one when I can.
If you ladies get pain that feels abnormal just ask. It's better to ask than it to progress into something worse or it may be nothing. I am on 100 mg my onc wanted to start me there because she was afraid the 150 would be too much and the 75 too less. I am going to mention the study on the other new one coming out so I hope it does in case I fail over here. I have been helping a friend of mine who found a lump get into her ob. I swear they need over here in the US get breast health as a more important topic than being just an october thing.
I will report back later this week after my visit! Let's hope for a good report!
Chani
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Schoolmom, I'm on my 11th round of Ibrance/Faslodex with Xgeva. I think that I've had some hair thinning (hair is acting a little weird for some reason), but it is not at all obvious. On a side note, I complimented a woman at church about how pretty her hair looked, and she laughed and said that it was a wig and that she'd worn them for years. Not cancer-related but just bad/thin hair. She promised to help me study wig selections and choices if it came to that. Made me feel BETTER for the future, should it come to that.
I see that your onc started you on the 100 mg dose rather than the 125 mg, which was used in the trials. Did he/she say why?
I have few side effects other than being more tired than I used to be. I've never had pain from the meds, but rather relief from the initial rib pain (extensive mets there). I would stop reading about the side effects. Most of that is legally covering their fannies. Many of us blessedly have few SE.
I was stable at 3 mo scans and showed improvement at 7 mos. Going for #3 scans on Jan 2nd. For me, it definitely took at least 6 mo for improvement to be obvious.
PatgMc, so glad you're back among the living again! Especially at Christmas!
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joynart. Dr put me on 100mg to start to see how my WBC etc reacts to th his l level. Will follow suggestion of chilling on SE. Thank you
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Hi everyone!
Wanted to weigh in with my experience on SEs and Results for our new Ibrance club members. I'm bone only with perhaps a small, ill defined brain "thing". I had NO pain prior to diagnosis and beginning this treatment, but the first six months I felt a lot of joint and bone pain as the extensive mets were healing.
The scans showed less "uptake" or activity each time.
After that first six months I had more energy and got more active.
Now I'm taking 75 mg for two weeks and then two weeks off...due to low WBC numbers. I'm between cycles 27 and 28. The SEs are neutropenia in my fingers during the weeks off. My brain gets a bit fuzzy at the end of the Ibrance cycle but improves quickly and stays good until the last few days of this med. I take a tramadolnat night n
Began lifting weights again recently. Running is out but I still walk and do as much hiking outside as I can.
The hair has thinned. Under the dye it has gone from 25% to 75% gray in two years. (Stress anyone?). I've also had two skin cancer events so watch that.
I do work at eating better now and feel much better. The Anti-cancer Diet has been my go to book for this. While a healthy diet may not cure cancer, it can't hurt. If It provides strength and energy to do these treatments and enjoy life, I'm all in. There is a Stage V Fitness thread where we encourage one another.
One story that inspired me from that book was about a man who wore a skull ring to remind himself why he was eating healthy and exercising. He hated having to eat right and exercise all the time. Once a year he would have a steak and a glass of wine. I did look for a skull ring as it seemed like a good reminder. Not a good grandma "look" for me, so instead I bought a diamond with a flaw and had it set in my grandmother's antique setting. The pressure marked the stone, but it still sparkles. We are all like that...
Sending hope that this treatment works for all of us!
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Iwrite, thank you for the great idea. I give in to not eating well because it makes me feel better some days, so I could use a gentle reminder.
Gracie, I wanted to welcome you. We are all different but put together because of a common infirmity. God loves us all the same. Before I was dxd I used to wonder "why does God love me so much?" After my dx I still ask that question. His love for me did not change just because my disease was discovered. Seek His love in all places.
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About being tired ... I have been so sluggish the last couple of weeks that I thought I was going to die in my bed, but today, first day of my week off - I feel like a million dollars, ready to run, and write, and call my mother (can't call her when I'm feeling tired, scared she'll worry !) - so that makes no sense, right ? I guess it does fluctuate. Also - had an interesting meeting today with a practician of "functional medicine". I contacted my new oncologist to be about maybe getting into at trial for the Abemaciclib that we're all excited about. I got a pretty firm rebuff via the oral therapy nurse, basically, no go away, its too early to tell.. come back for your regularly scheduled apt in a month. I sent an email with horrifying pictures of me and my little problem (spreading skin mets), hoping for a reaction, but most likely it will just be another no, go away ... as usual. Nevertheless I'm all hyped up. Looking forward to Christmas maybe ? Happy happy everybody
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I just love those days, when you wake up ready to conquer the world! I think I am starting cycle 27, or 28, I lost count, but my Pet scan last week, showed not only no progression, but even more shrinkage. I think its awesome! My last scan, 5 months ago, just showed stable. So this is great news! I only take 75mg a month, so obviously that is working for me! We are all unique and so all treatments affect each of us differently.
Pat, welcome back to the land of the living! So sorry that you had to go through that.
Hugs and prayers,
Claudia
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schoolmom.... this is my tenth cycle. I've found every time that the fatigue hits me four to five days before the last tablet for the cycle and continues for at least one week.
Until the last few cycles I experienced sternum pain which felt similar to a bruise and I couldn't bear to touch that area.
My hair has thinned slightly all over but not in patches as is mentioned on the website and certainly not male pattern baldness. It's very dry and fluffy but my oncologist said that Letrozole/Femara also causes both of those.
The fatigue is something you just get used to; at least that's what I've found.
I experience a loss of appetite and some nausea at the same time as the fatigue hits.
I think the website exaggerates the side effects so don't be too freaked out by them.
I also bought a wig at the beginning just in case of male pattern baldness. I haven't needed it yet but my health insurance paid for it so I thought it was a good idea as who knows what will happen down the road. If I happen to be going somewhere and my hair is playing up more than usual, I can wear it. I've got over it now but at first the change in my hair was a bit sad as I had pretty hair. I can say that now that I don't because it's not bragging now haha.
On the plus side I began to feel healthier after just a few cycles of Ibrance and I've had two stable bone scans since starting it. My oncologist started me on 125mgm but because neutropenia reached the highest grade he has dropped me to 100mgm the last three cycles.
You'll be fine. You will get used to it. You might not love it but it's your friend.
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This is a general question. Does anyone find they have blurry vision on Ibrance, especially in the morning? I'm trying to eliminate causes. It doesn't seem to be a usual vision problem because it improves in the afternoon.
Oh Claudia, how happy I am for you! How wonderful after persevering for so long. It also gives me enormous hope and faith to know that as I'm on my tenth and had only stable scans with no progression. I've been happy with that but longing to see some regression. You've given me back my optimism which went AWOL for a few days. Thank you xx
Iwrite ...thanks for the reminder about eating. I always ate a healthy diet but on my fatigue days I lose appetite and have some nausea and I've been letting myself get away with not eating properly this cycle. I'll pick up on my game now.
cchilders...I always wear a mask when I go to the Cancer Centre. It's in a large public hospital for one thing and lots of visitors wander the common mall and aren't careful where they cough. The waiting room in the blood lab is always crowded so I wait outside. The staff don't mind. I tell them I'll be just outside and they come and call me for my turn. I was told when I went on the trial of Ibrance and Letrozole not to have a flu shot. I don't know why and I always have in the past but I'm following their instructions to the letter. I want to stay on that trial.
One tip I was told recently about avoiding colds and flu is to smear a little Bactroban (antibiotic ointment) around and just inside your nostrils (not too far or it makes your nose run), just on the outside mainly and it kills germs before you breathe them in. A friend visited a large number of countries in Europe and, although his wife and daughter became very ill with that nasty flu, he didn't.
PatGMc .....I'm glad you're getting back to us, and to yourself. We've missed you.
Hugs everyone xx
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Leapfrog, yes, I get blurry vision occasionally. My onc said it is a se and not worry about it unless it affects my driving, etc., which it doesn't. I went and saw my opthomologist, and he said my eyes are healthy. He recommended eye drops because my eyes also get very dry, and they help a lot. He said to use them as often as needed. He recommended the more expensive brands and gave me some options. I can look it up if you want me to post them, but I found they were easily available--just expensive.
Schoolmom, yes, fatigue is my constant companion. I have learned when to push through it and when to just sit down and rest. You will find your balance. My hair has thinned a lot, but not in patches and most of the time I can work with it. I do wear a wig for special occasions or when I just want to feel pretty again. I know it makes me look at least 10 years younger.
I get nausea the last couple of days of each cycle, which happens to be today. I am on 125mg and getting ready to start cycle 20. I guess I am a little different than what most people post in that I am hungry all the time and can always eat; therefore, I have to be careful because of weight gain. I think it is because I have some slight stomach irritation which makes me feel hungry. I have had it since my first scan but my radiologist insists it is just irritation.
I haven't gotten sick often but I am careful. I only wear a mask when my 2 year-old granddaughter is sick (she lives with me) Otherwise, I wash my hands often and sanitize frequently. I try not to shake hands, and I do avoid crowds. Fortunately for me, my hospital where I get my treatments is not very busy and I am able to avoid the crowds. They just built a new facility not too far away from the old one so it has attracted most of the patients, but I still go to the old one as that is where my onc is. I also believe in lots of fresh air and sunshine. Fortunately I live in San Diego and can open my windows most every day.
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My onc said it was ok to get the flu shot so I just got it last week. I start Ibrance at the first of the year
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ladies thanks for fatigue and side effect updates. I work in education, turn 65 in January and have decided this school year I will retire. Fortunately I had more than 100 sick days accumulated so I am resting at home rather than at a pk center with 800 four year olds.
My last day was 10/26 then gall bladder surgery on 11/1 and now all this. I plan to use days till spring break, mid March...I may still have some left by then cuz they only count work days.....long term disability checks will start end of January which will give additional financial help in case I get docked end of year when days run out.
I am blessed and can't complain. Tired but chilling at home
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Thanks IntoLight. I keep forgetting to ask my oncologist about the blurry vision. I use drops for dry eyes but I should do it more often. Thanks for the reminder!
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This is an interesting and informative article published yesterday in Forbes. At first, I didn't think it was relevant to me, but upon reading further (and it's rather long), I think that it's applicable to and encouraging for all of us.
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Iwrite...you mentioned neutropenia in your fingers. What are the symptoms? In the last couple months my fingers especially at night go numb. I thought I had carpal tunnel.0
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Airlinegal- my fingertips feel swollen and if I press on my thumb pads the indentations stay. It feels like I have bandaids over all my fingertips.
Sometimes my fingers get bright red. Weird, but not interfering with life :
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Thank you all for your warm welcomes and prayers!!! It's been 5 years since I visited these boards regularly and I am reminded now at how helpful and caring everyone is. It is truly so comforting to know that others are doing well despite some SE, seeing disease regression and that we are not alone. Grateful - thank you.
Thank you also for the compassion and kind words around my family plans being abruptly derailed... My dream has been to be a mother and to see my hubby a Dad. We've been waiting 6 years since cancer came into our lives... and now MBC
I keep thinking that it may still happen... We did have two close friends offer to be our gestational surrogates (we have embyros!) - however one friend's partner wasn't on board and the other friend ended up going MIA because she ended up with an 'oops' pregnancy and she didn't know how to tell me. I have had a really difficult time accepting that both offers fell through, at the time they felt like miracles to me. Even without knowing if Ibrance is doing it's job, we have looked into surrogate agencies and so far there are no local surrogates available. We also don't have $50,000 - $65,000 (though everyone keeps telling us that 'the money will just come') Still, we have babies waiting for us, it's a matter of getting me stable and finding someone who will help us bring one of them into the world. I never thought I would still pursue this after a stage 4 diagnosis, but we just feel so strongly that at least one of our babies is supposed to be here. @PatgMc - I'm sorry to hear you've had the flu! I hope you are feeling stronger each day. Also thank you for sharing about your friend LS who had MBC and adopted. Stories like this give me so much hope. She is NED 16 years later? And on zero treatment!? Curious where her recurrence site was... ?
@cchilders79 - It doesn't hurt to research adoption! I think that part of what is helping my emotions is the fact that I am not giving up on the dream for our baby. I hope you can find some useful adoption information and resources. Perhaps Pat (above) might know the route her friend LS took. Holding onto baby hope with you. XO
@singlemom1 - Thank you for sharing this! It's comforting to know that it's been 2 years since you've had a similar recurrence as myself. Stable and NED is what I like to hear! I'm so happy for you. My medialstinal nodes are Subcarinal (biggest cluster that through bronchoscopy determined it was causing compression on my right airway) Scary! Which is why I ended up having radiation. A smaller hilar node was also radiated, probably since we were going in there anyway. I was told radiation would kill 90% of the cancer. I fricking hope Ibrance is doing the rest.
@Txgatata - Sounds like our mets are in similar location too. I wish you all the best with radiation. If your esophagus happens to be in the line of fire, I recommend getting a lidocaine numbing agent (Pink Lady) for when you eat / drink.
All of the new drugs / studies are so promising - But I do worry about getting access to them in Canada. The process for drug approvals and coverage seems to take much longer here. Ibrance is still not covered (because $) and women who don't have extended benefits are in the dark as to how long it will be before it's accessible. I do hope that Abemaciclib (Verzenio) and these new PARPis are available to us all when we need them. Through the BC Cancer Agency POG (personalized oncogenomics) program I found out I have an acquired BRCA mutation (not germline/hereditary). I was stunned! I read that it is believed that 20% of women without hereditary BRCA may actually have a somatic BRCA mutation... So PARPs are actionable.
@JoynerL - Thank you for posting about the above. Hopeful PARPs will be helpful to many more.
Curious if anyone else has had their tumours sequenced - and if anyone else found out they had a somatic (acquired) BRCA mutation?
I'm so happy so many of you saw improvements as early as 3-6 months. I ended up cancelling my CT today and will scan at the end of January. By now we thought I'd have 3 cycles in me, but alas, one month break after cycle 1 delayed. My neutrophils MUST cooperate! Last labwork my neutrophils were at 1.0 and I was only on DAY 10 of cycle 2 (100mcg) My oncologist said that my bone marrow is overly sensitive to Ibrance. I just had my first G-CSF injection (Grastofil cousin of Neupogen) yesterday. Hoping it will rescue so I can sail into the new year on cycle 3. I am anxious to see what the cancer has done since September.
Anyone else had G-CSF / Neupogen injections WHILE they are still on a cycle? Or has it been in your OFF-week? My MO said she has never done it before - I am her first. I am told I will have flu-like symptoms and mild fever from Grastofil as it's different than Neupogen. Just in time for the holidays
Is anyone else worried / sad / accepting that they might miss out on holiday gatherings? If my counts are too low and I feel like crap I will have to make the call to miss out on three family events.
Sorry for the lengthy read. I somehow end up doing these marathon posts...
Before I sign off I will report the SEs I've noticed so far >>>
- mild to severe neutropenia (no fever thank goodness)
- wicked mouth sores (because neutrophils may have been at 0.0)
- fatigue / exhaustion usually around Day 15 and on... (worse when counts were under 1.0)
- hair thinning / shedding a ton
- eyes and head feel "off" when my counts are lower. Like slight vertigo almost, but no nausea. And my eyes aren't blurry, but vision and head feels like after I've just come off a roller coaster (Space Mountain at Disneyland) - like my equilibrium is off.
- headaches on and off
- I totally burped smoke twice last night!!! (As others have reported!) HA - so weird and gross!
Thankfully, I too have had "World-Conquering" days where I feel good and can do things. If my bone marrow would just produce and not get knocked down so hard, for me Ibrance is doable and NOT like chemo!
Much love all. XO
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My wife just finished her fourth cycle of ibrance. Her tumor markers dropped once again. CA-15 had stalled out the last two times, but they and CEA both fell by over 10% this time. She takes ibrance with letrozole, but also supplements with medicinal mushrooms, primarily maitake D extract, and this cycle she also started taking 250mg of bovine lactoferrin. It's an inexpensive immune stimulator, a component of milk, that has shown some efficacy against breast cancer in animal studies, and efficacy against metastatic intestinal cancer in a human trial and preserves bone mass. Hard to say if its making a difference, but it was worth a try in my opinion.
https://bmccancer.biomedcentral.com/articles/10.11...
https://www.hindawi.com/journals/isrn/2014/184278/
https://www.ncbi.nlm.nih.gov/pubmed/28165293
https://www.ncbi.nlm.nih.gov/pubmed/23462173
https://clinicaltrials.gov/ct2/show/NCT01941810
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC29158...
https://www.ncbi.nlm.nih.gov/pubmed/15222486
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Amarantha the radiation was done at the same time and I had to stop my Ibrance treatment bc the WBC went too low. I did have lesions in my stomach cavity that were not targeted by the radiation and they all disappeared. I often wonder if the Ibrance or radiation did the most or was it a combination of everything. I did not have confidence I had anxiety and also I had a hysterectomy in June so I really was still healing from that surgery. I don't know what was aching. I do have pains now in my left hip and sometimes my joints.
Take care and I hope for the best results for all of us.
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Hi Joyner,
Thanks for posting that article on PARP inhibitors! Yes, the trial just found a 3 month extension of PFS, however they note that it may well do much better in combination with other drugs. The PARP inhibitors are mostly for cancers with BRCA1 mutations, so not of use to many of us. However, as we discussed before, expression of BRCA1 protein depends on the kinase CDK12, so when CDK12 inhibitors move into clinical trials, then everyone taking them will lose BRCA expression and will be sensitizes to PARP inhibitors. There is much hope for a PARP inhibitor- CDK12 inhibitor combination, but pharma just has to move it along - CDK12 inhibitors just went into phase 1 for some other kind of cancer, and PARP inhibitors look promising but need something to make them more broadly useful- so maybe this will be the next major breakthrough! We have to keep our eyes on all these different pipeline drugs and drug combos..
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Leapfrog, so glad you're settling in to your new nest. I'll try to clarify my discussion with my MO regarding reducing the Ibrance from 125mg to 100mg. Initially I had trouble with SE's (mouth sores, fatigue, heartburn, headaches, etc) but they settled down by the 3rd cycle. Now at 5th cycle, they have mostly subsided but I do have neuropathy and a few lingering issues, so I thought it wouldn't hurt to talk to MO about reducing my dosage. My labs have also evened out and, while on the low side, are within tolerances. My MO said if SE's were really untolerable and dramatically affecting my QOL, we can talk. Otherwise, she recommended staying on the higher dose, stating that the longer I'm on the higher dose, the more effective the lower dose will be when and if I go that route. Sort of like hitting the gas pedal hard at the starting line to get up to speed, then going into cruise control.
I love the image of the diamond with the tiny flaw. I'm praying we all shine through this holiday season!
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Hello everyone and happy holidays. I just started round 31 of ibrance/letrozole and remain NED! I had scans and bloodwork yesterday and everything looks good. wishing everyone the same success. Lets hope that 2018 brings wonderful news for everyone!
Kitty
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what wonderful news. Continued good improvement for us all
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