Ibrance (Palbociclib)
Comments
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Micmel, adding my prayers to those others, we will be praying for you tomorrow as you scan. Plan something fun for the weekend to take your mind off the endless waiting.
Also happy dance for Dianarose and platelets holding and hooray for our U.K. friends.
Hello also to our new friends here, we're sorry you had to find us but glad you did. It's a good group of very smart, helpful ladies and our occasional man. :-)
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Lalady, I am sorry to hear of your progression. I hope the new tx plan gets you right back to a good place! And so glad you are continuing with your travels!! I think that is great and I am inspired by you!
Micmel- good luck on your scans!! Please let us know.
I only post once in awhile but I read the boards fairly consistently. You guys are all great and very knowledgeable. I find the boards very helpful when having feelings of isolation as no one in my circle can really understand what it is like to live with this disease. So big thank you to you all for being here!
Question for those with liver mets...........did you have any symptoms? I have had a bruise type feeling/pain in upper right corner of abdomen for a few days.There is no bruise but it feels like one and is very tender. No other symptoms. I went to PCP today as I was not thinking much of it but ultra sounds of liver, pancreas and spleen were ordered to " rule out malignancy". Has anyone had similiar symptoms?
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At some point liver mets get large enough that they push on other organs or you can feel them. Not usually painful or even noticeable until they are quite large, or so I believe.
>Z<
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Hello ladies,
So glad to see our friends in the UK getting some help from Pfizer!!!
Micmel - hoping your scans go well tomorrow and the results are great! I scan Monday and completely understand the concerns.
Welcome to the club Susan. Wonderful folks and valuable advice are all here for you. Take care of yourself!
Swollen ankle is something I have experienced on Ibrance. I'm on round 19 and at about 6 months noticed my right leg swelling below the knee. My doctor checked for clots, but there was nothing. Since then it has settled into two soft raised lumps on that leg. They ache occasionally, but are otherwise just annoying. No one else would see them, but I took a tape measure out and discovered an extra 1/4 in diameter in my right leg. The other leg is fine. The doctor doesn't seem concerned so I rub on some frankincence and try to ignore them.
Thinking of you all!
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That is good news for UK! hope they can negotiate a better price as we need these drugs in our arsenal! let's hope the woman who need this drug can avail of it in the meantime.
For those asking about swollen feet...I just got a weird 24hr rash on my feet that has cleared but only 7 days in! On the plus side I am sleeping so much better on this combo.
Sadieservant- enjoy the new car!!! onc can see good detail on my pluera effusion. I get mri and ct scans. Enough to see skin is thickening and he needed to changed tactics. I only have a small amount. Am hoping ibrance+faslodex will. Interesting to hear about people's experience with pluera effusion.
I failed on arimidex as first line after 3 months though have seen people do extremely well on hormone alone. I suppose it depends on our individual make up. My onc has a woman NED on arimidex and she's been on it 17years. He says they have no idea why her cancer has not come back and he is afraid to stop her on it. For Bright55 on letrozole hoping for 2 years I see another new member Susandes here on it alone for 4 yesrs before ibrance was added which is really good run! Hope ibrance works well for you susandes and Bright that you don't need it for a long time!
Lalady- cruise sounds amazing! I can highly Stockholm and Copenhagen, they both blew my mind! Beautiful cities. I'm only 7 days into ibrance and afraid to book a holiday if case I fail after 3 cycles and I have to cancel! I fancy an island hoping cruise of Greek Isles.
Best of luck with scans micmel. Prays, positives vibes for good results!
Welcome to new members too. I've already learned so much here one week into ibrance. Best of luck to all x
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Lalady, I loved Stockholm. Loved Copenhagen even more. It's been many years and I can't remember the name of the amusement park/gardens but it was all so lovely. (Tivoli?) I hope your trip is just perfect and that there is no time to even think about cancer.
I'm not planning a trip this summer but have something so exciting about to happen. We're surprising our 13 year old granddaughter with her dream piano next week and have a fun plan. I'll let you guys know after we do it.
Lilly, thank you for the longevity stories. I hang on every one of them because what is possible for one is possible for all of us!
Regarding rashes, I have one off and on that comes halfway up my calves. Itchy sensation but no real break-outs any more. The more I experience and the more I read here, it seems Ibrance likes to keep us guessing with her on-again/off-again side effects. And regarding swelling, my oncologist always squishes around on my ankles and asks about swelling so he must have other patients with that problem. So far, I have none.
Welcome to this week's new friends! May your bones and livers and lungs and pleura and lymph nodes and stomachs find themselves with fewer cancer cells clogging them next week. May we be the longest lasting thread ever on BCO! God bless us every one!
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Pat that's sounds like a wonderful surprise. I'm always in awe of musical people. It's such a gift. Lucky girl!
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Lilly, Iwrite,singlemom~ thank you for the prayers and kind thoughts. I'm getting ready to go soon and it's just a rainy yucky morning in the northeast. Just can't wait to get it Over with. Prayers for you as well on Monday, Iwrite! I will be thinking of you also!! It is so nice to have the support from you all! Prayers all around! ~M~
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Claire, hope your medication changes don't effect your coming trip. You deserve it, I'm really impressed by your enthusiasm for life while it is here. Pat(Sadie) hope that pleurx goes away soon. It's been almost a year since I had the last one of mine out, and believe or not I'm jogging most mornings dragging my blind doggy behind me. How's your exercise with Sadie coming?
On the spreadsheet thing, I have the replies that I got, but I think it's only about 7. I still don't know what my insurance company will pay since as of yet I've had samples from MOs office. On lots of things MO bills something and insurance company pays something less, that being their managed cost. I think that is tied into the ACA thing, but that discount will still apply with Trumpcare knot. I can give you an analysis of the 7, but it's pretty meaningless without more participation. All of the ones with the exception of Pat (Sadie) are on medicare with a part D.
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Good morning, Happy Friday. I am a lurker mostly to the boards but have recently started Ibrance with Arimidex after Faslodex failed me after 13 months. I promise I will go back and read this thread so I don't ask too many already answered questions - but just wanted to jump in and introduce myself and see if anyone else was new to this drug.
First off - a bit about my story - I was diagnosed metastatic in June of 2011 (almost 6 years ago!!) with mets to my abdomen (ovaries, omentum, small intestines). I did Xeloda out of the gate in 2011 for 4months and got to NED. Switched to Femara alone where I remained NED until April of 2015. At that time, we tried to go back to Xeloda but I couldn't tolerate it with the GI issues I was having with the cancer in my belly area. Tried Afinitor/Aromasin for a couple months but markers were continuing to rise and I ended up with a blockage in my intestines (cancer) which landed me in the hospital. Decided we needed to beat things back with IV chemo so did 6 months of Abraxane and was back to NED after 3 months of that treatment. At the conclusion of the Abraxane in early 2016, I switched to Faslodex alone until 4/6 when markers/scans revealed it was back in the intestines and now introduced to the liver (1 cm nodule and some other smaller areas of concern. Whew - that is a lot. Anyway - we started on Arimidex and Ibrance on 4/8 so I have only completed 1 cycle so far (this week is my off week). I had nausea, heart burn and diarrhea the first two weeks, but that seems to have been rectified with protonix and Zofran as needed. My neutrophils got down as low as 1.7 but rebound up to 2 in my off week so we are staying the course with the dose (125) and starting next cycle Monday. Overall, not a terrible side effects, except for the fact that I feel so tired all the time. 3pm comes at work and I swear I need toothpicks to keep my eyes open. Does this get better or worse as you continue on?
Second question - how long was it before you could tell if it was working? My onc told me he expected to see a Rise after month 1 in my TM's, to stabilize after month 2 and would hope to see a drop after month 3. Got my markes and damned if he is not right - they jumped significantly. I guess I just want to know if any of you experience the Rise, Stabilize, drop effect.
Thank you for reading this rambling post. Looking forward to getting to know you.
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Well, hello. I just wrote a long post to introduce myself and lost it when I tried to submit it. Dang it. I don't think I have the energy to repost the whole thing, so here is a synopsis --
Metastatic since June 2011 with mets to abdominal areas - ovaries, omentum, small intestines. did Xeloda out of the gate, got to NED, switched to Femara, stayed NED until 4/2015, progression to small intestines, non malignant ascites. Tried Xeloda again - couldn't tolerate, tried A/A, markers kept rising. Did 6 months of Abraxane - got to NED - switched to Faslodex, did 13 rounds and in April of this year, progression to small intestines and now liver involvement. Started Ibrance on 4/8 with Arimidex, will start next cycle on Monday. Whew - I think that covers it.
Anyway - I will go back and read more of this thread so I don't annoy you with too many repetitive questions, but really just wanted to ask a few quick things if you don't mind.
1) After initially having some nausea and diarrhea, side effects have seemed nominal with the exception of how tired I am. Does this get worse or even out as you get used to the drug.
2) How long before you were able to tell it was working for you. I am a bit of an inpatient sort, lol. My doc told me he expected to see the following pattern in my markers - Rise after cycle 1, stabilize after cycle 2, drop after round 3. Part 1 is correct as my markers jumped this week pretty significantly. Just curious if anyone experienced that - does it take awhile for it to work?
3) Has anyone been able to get back to NED on this drug?
Okay - I will stop rambling and read. I hope to get to know you all soon! Thank you in advance!
Sally
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Welcome mustang~ you will find knowledge and support here. Sounds like you've been kicking butt. I have had very stable blood work, and have more side effects from the hormonal therapy overall not too bad. Hot flashes aren't fun at all. I was reaching the crash point around 200, I have a pallative care doctor and she gave me a low dose of ritilan and I take it around 1100 am or earlier depending on what my day is like. There are some days I don't take them , if I don't feel well or want to rest. But it has been a Blessing to me. It really works well and I like to keep it in my back pocket ! Will be adding you to my prayer list. Gentle hugs ~M~
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Welcome mustang~ you will find knowledge and support here. Sounds like you've been kicking butt. I have had very stable blood work, and have more side effects from the hormonal therapy overall not too bad. Heat flashes aren't fun at all. I was reaching the crash point around 200, I have a pallative care doctor and she gave me a low dose of ritilan and I take it around 1100 am or earlier depending on what my day is like. There are some days I don't take them , if I don't feel well or want to rest. But it has been a Blessing to me. It really works well and I like to keep it in my back pocket ! I saw my markers start falling around month three. I scanned this morning. And on round six of ibrance, Waiting for results now!Will be adding you to my prayer list. Gentle hugs ~M~ Sorry for the crazy computer behavior. Kept getting an error message.
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Mustang - welcome to the Ibrance thread.
I've recently had problems with posts and I've seen duplications form others. It looks like your original was posted anyway. Thanks you for your info - it really helps us all to hear everyones story and what dx and tx they have been through and are currently on.
I'm on my third month of Ibrance and Arimidex. I had similar reaction the first month with indigestion - which I concluded was worse if I took Ibrance withy meal or just after. Now I wait an hour, and sometimes I've forgotten until I go to bed a few hours later - and take it with no side effects. I do try to keep near to having food.
I don't have any serious side effects, my wbc count went down to around 2.3, and my MO says she will worry if I go under 1. I have been tired, and this week really so. Im not sure if this was kicked off by us hosting our youth rugby club end of year party in our back garden(yard) last weekend. My two border collie dogs were exhausted on Monday too - they had spend Sunday afternoon playing basketball with all the kids form the club - dog heaven! Monday I could rest as they didnt bug me at all all day and spent a lot of it in their baskets! (unheard of!)
But I've continued to be tired and have had to retire for a nap some afternoons (Im not working)
Also - any tumour markers don't seem to be a good measure for me and have never been according to my MO. I go by my liver markers, which spiked last October when I was DX with MBC and now have returned to normal - how I love normal! I would say I have discomfort - which waxes and wanes. I am putting down any increase in pain there down to the Ibrance having a field day! I have a scan on Monday - so will be able to see whether Ibrance is working for me - x-fingers!
My joints are also sore, which I've been putting down to Arimidex and also my pre-existing Arthritis. Very sore this morning - and I didn't do anything unusual yesterday.
I wish you well - you will find a lot of information and bags of support on this thread.
Sarah
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Sally -
I saw a dramatic response in 3 months, but it can take up to a year or more to finish "working". I had a surprisingly good scan at 16 months last week. Could be Ibrance kicking in after a year or some changes to my complementary routine. In Ibrance, trial they did have people with responses 6, 9 and 12 months out. My cancer markers went up for 3 months on this program. After that they have been all over the map.
The hormone suppression is the primary cause of my side effects, like fatigue. But Ibrance causes rashes, mouth sores, burning scalp. I hung on at 125mg for a year, but recently dropped to 100mg because I got tired of my scalp being on fire. The SE's come and go, but they can be managed/reduced with regular moderate exercise.
Micmel - Get through the scan and have a great weekend. Whatever the results, we'll deal with it when they post.
CIVE - I haven't responded because I have a high deductible Aetna plan. They have never blinked at any cost. After I meet my deductible (~8K), I pay NOTHING for ANYTHING in network. No-copays. One scan, one Ibrance delivery and a visit to my onc and my deductible is met by February. I don't even see a bill for the remaining 11 months of the year.
I really cannot believe how wonderful they have been. They approved Ibrance in days. Technically the plan has a $250 co-pay for Ibrance, but the specialty pharmacy applied to pfizer for me for support and pfizer pays the $250. And even pfizer didn't have that program, I would not pay the $250 copay because of the max out of pocket limit in the plan.
I understand that high deductible plans seems scary, but with the healthcare savings plan and an absolute limit on what you pay out of pocket I like it better. In general, life is good if you are on private insurance in the US. I am worried about ever having to switch but my husband has a good job that he loves. We have at least 4 more years with this company ... hopefully we will be through this health care drama by then and pre-existing conditions will universally covered again.
>Z<
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Thank you! Sorry for the double post - I got an error message both times I tried to post!
McMel - Thanks for the mention on Ritalin, I have heard of that -will try to remember to bring that up to my onc if this continues. Praying for great results on that scan.
Scwilly - Youth rugby? A woman after my own heart. My youngest plays rugby - played high school and just finished his first year of college rugby at University of Northern Iowa. We love the sport and love what it has done for our son! He is a wing and plays both 7's and 15's - so we get to watch him play in both the fall and the spring. So fun to watch! I love that it is getting more popular each and every day! Thanks for the tip on waiting an hour after I eat - I have been taking it literally either just before or just after I eat my dinner. I will try your tip. The joint pain I am used to - being on hormonals for 10 years (Tamoxifen after early stage dx and all those since), yikes. Aleve is something I have become very friendly with! Good luck with your scan on Monday!
Zarovka - You have been on this for 16 months? Awesome - I am glad to hear that and thank you for the info on time to see results. I really am glad to meet you all!
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Welcome, Mustang-Sally, sorry you find yourself here but hopefully you will have great success with Ibrance. I also am on Ibrance and letrozole now for 16 months, currently the 17th cycle. It seems each time my scan also shows my lung tumor being reduced so it seems it continues to work for a long time.
I had lots of digestive issues and other side effects for a long time but I just realized a few weeks ago that the only thing now seems to be the ongoing fatigue. I just don't have any energy and lots of muscle aches which I think are from the letrozole. Sometimes, when I think about the meds we are on, it's no wonder I'm tired. Besides just having cancer and taking Ibrance and letrozole, I take HBP meds and allergy meds and I'm not young anymore LOL. So it's no wonder I'm tired and I'm sure that's true for most of us here.
Micmel, now that the scan has been done, hope you can just try to think of other things and enjoy the weekend. Sending good vibes for great results.
PatG, how wonderful to surprise your granddaughter with a piano. I've always wanted a piano but it never seemed to work out. I'm still involved in music and sing with our church choir for the last 35 years but The piano is my first love. I hope you will take a picture or short video and share it here of that special occasion. What fun that will be. Wish I could be a fly on the wall.
Faith (in the future)
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Had my first 2 week labs, and will continue on 125. WBC was 2.1 and absolute neutrophil was 1.2. Mostly diarrhea and fatigue but manageable. I wanted to share something with all of you. I had a few minutes to kill before my appt today and went downtown. An artist has strung these umbrellas across the street for no reason other than to bring smiles. It sure worked for me and I hope it all gives you a little smile as well. Wishing all a good weekend.
Edited to add.......anybody get blisters on their lips? I have mouth sores but they are manageable. Blisters just started this afternoon. I"m using baking soda rinse and vaseline. Any other ideas?
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Hi Sally,
To answer a couple of your questions, I am a newbie here. I started Arimidex at the end of March and Ibrance a couple of weeks later while we figured out if I was eligible and how much I needed to lay through my extended health (I am in Canada). Do, just two weeks into my first cycle.
I have been pretty much SE free. No nausea and no mouth sores so far. I take my Ibrance with my breakfast. The one thing I am experiencing is fatigue. I don't think it is the Arimidex as it really manifested itself this last week and I had been on this AI for more than two years as an adjuvant treatment with no issues. Of course, one possible contributing factor is the fact that I finally returned to full time at work two weeks ago. All I know is I am ready for bed each night!
Hope this treatment works wonders for you.
Cive, exercise with Sadie has been okay. She is having some issues with scratching and not wanting to walk at times. I'm having trouble unraveling the issue unfortunately. Collies are a puzzle.
Pat
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Lindalou, I have had problems with cold sores on my lips since starting Ibrance. To be honest, I've had problems with cold sores around my mouth since I was 11 and got mono, followed by some sort of GI virus that coated the inside of my mouth with blisters down my throat and into my stomach. I remember being fascinated by the doctor giving the diagnosis to my mom and asked him to repeat the word. I don't remember what it was, but it had 13 syllables! LOL! Anyway, when I get out in the sun, I will get a fever blister on my lips. I have taken L-Lysine off and on over the past 30 years so I don't have to take an antiretroviral. My MO approved me to use L-Lysine (it usually comes in 1000 mg pressed capsules that are horse sized). At the beginning of each cycle, I feel a dryness and tingling on my lower lip and bump up the dose of L-Lysine. I take 1000 mg every day, but when I am battling a fever blister, I may take up to 8000 mg a day without any problems. I don't get full-blown blisters that break open using this regimen. L-Lysine is consumed in food, but nobody gets a full dose unless you are on an aggressive veggie diet and it is something the body cannot manufacture on its own. It's relatively cheap, about $11 for a medium-sized bottle. Why not ask your MO if you can add this to see if it helps. Start bumping up the dose when you feel a blister starting to tingle your lip. Remember, cold sores/fever blisters are from herpes zoster, which is also what triggers shingles. You can't overdose on L-Lysine. If your body does not use it, it flushes out. I'd rather go this route than have to take a prescription med or risk getting a fully developed blister on my mouth. Best of luck and remember to talk to your MO about it.
Edited to add I use a lip cream several times every day. If I keep my lips moist, I have fewer problems. I use Aquaphor Lip Repair 0.35 ounce. It costs about $5 a tube (Wal-Mart, Walgreen, grocery stores, etc.)
Carol
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Lindalou, your balloons are wonderful! They gave me a lift, too! Gorgeous. I can't imagine how all of those were mounted!
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linda~ I use biotine mouthwash and I use it like three times a day and it helps wonders. I would use regular chapstick, or drop of neosporin, but you cant get it in your mouth. Chapstick always helped me alot.Just never stop using it. Keep the blisters moist. Always or they will crack. I hope you find relief. Prayers for everyone's as always! ~M~
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That's what I've noticed with Ibrance, fatigue. I'm due for Xgeva this month and my primary side effect with it has been energy. Hopefully I'll get some this month.
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Thanks Carol and Micmel for the tips. I will ask MO about L-Lysine and just bought some Aquaphor Lip repair. I use Biotine so will continue to do that as well.
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I've been reading previous post and thought I would introduce myself. I have completed 2 cycles of Ibrance/Amridex combination and am currently on week 2 of cycle 3. Some of the side effects during the first two cycles were fatigue, metallic taste in mouth, sores in my nose, low WBC, ANC and platelet counts, and high alkaline phosphatase, AST and ALT. Test were run to rule out bone and liver involvement - all negative so after a two week wait and new blood test results I was able to start on cycle 3. I had a follow up Ct scan for the thoracic surgeon which showed I have 2 blood clots in both my lungs. A Doppler test revealed I also have a blood clot in my lower right leg. So now I am on a blood thinner and have to give myself a shot daily in my stomach area, which now has turned in lovely black and blue splotches. I am hoping for no more problems as I continue this journey. Has anyone else had problems with blood clots while taking Ibrance?
I enjoy reading your posts and keep you all in my prayers. Thanks and wishing everyone a great weekend
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TerriJo, try to get on an oral blood thinner (Xarelto) as soon as possible. I was on enoxaparin shots twice a day for two months, which ended the middle of September 2016 and my stomach and both thighs are still darker from the black and blue bruising. They even show up on my Pet-CT scans, which I just had another one of on 5/3/17. My results came in on Thursday but I still have not had the guts to read them. I have found that when results come in faster than the normal turnaround time it is usually not good news and therefore have elected not to look at them until Sunday night or Monday. If I am not mistaken I believe one of the side effects of ibrance is blood clots so I urge you not to miss a shot but do try to get on an oral one. Xarelto offers copay assistance and I pay nothing for it. I am hopeful that they will always offer this $0 copay because I will be on blood thinners for life. It was due to a blood clot that they found that my breast cancer wasn't finished with me and came back for a repeat performance to my bones and lung. I feel your pain with those shots. They are brutal with the bruising.0
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After 6 wonderful months of TMs going down down down, they are starting to go up again. It's just by about 15 % but still wrecks havoc on my mind.
I just started swimming regularly again - can something like that cause a slight rise by chance? I'm always curious if inflammation and other things skew those tests or not.
I do notice my tongue is looking better. I've had a deep line down the middle of it for the last year and I'm trying to do some alt therapy stuff to make improvements in my body, which I hope to see in my tongue. (all of this feels very silly typed out....but I need something I can hold onto)
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Jen- death of cancer cells can make markers go up
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Jen - One of mine went up 25%, scans were clear. Many things make cancer markers go up, besides cancer. I see 20-30% variability in my TMs. IOW, I believe if I took 10 samples on the same day, the numbers would vary +/- 20%. Some doctors need to see them double before they mean anything. All of those that use them need to see a trend over a few months. Other doctors don't use them.
Keep swimming.
>Z<
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thanks friends, my brain and my nerves aren't in the same place but you help me get out of my nerves and back to a more rational place
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