Ibrance (Palbociclib)
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Leapfrog, I can so relate to your conversation with your Mo! My Pn asked me if I liked being a martyr. Because that was what I was doing by not keeping on top of my pain. That made me very angry at first, but I eventually realized she had a point. Like you, my body hates pain meds, so it is difficult to find anything that doesn't make me vomit. I am not going through anything close to you but you have inspired me to get back to work on this problem. I am dealing with bone mets in neck, spine, hips, pelvis and 1 rib, but I also have horrible arthritis in one of my knees, bursitis in both hips and 2 discs with 0 space and 1 with pencil line width space.
Thank you for the reminder to get on top of this.
Hugs and prayers,
Claudia
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Leapfrog, PatgMc, Nanahope, Tanya, French horn 5, Nkb, Tina Marie, Lissalou, Jaycee, Bigbhome, Faith, - I've read up on the recent posts and am very moved by what people are sharing. What a journey.
I took my first Ibrance this evening. I'm at the stage of magically hoping it will make all the cancer disappear by tomorrow morning. I have skin mets all over the site of my ex-left-breast which are starting to look rather impressive and itch and even hurt, and remaining (right) breast is now quite swollen and pink. PET scan tomorrow morning. I would love to hear from others hear who have skin mets. (Starting to read-up on radiation recall as well)
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Thank you all for your answers.
Nonahope I'm starting to suspectpect the same might be happening to me. I haven't been able to eat anything today which makes me sicker and I'm dehydrated and having hipotension because even small amounts of water will make me feel full and bad. I will talk to my doctor today (if she ever picks up the phone). I was supposed to get blood taken on friday but might have it done earlier if the creatinine issue is dangerous or serious. Also not eating is gonna kill me before cancer does.
If no solution is found I might discontinue treatment, this is not quality of life and I can't be like this for a year. I thought of changing to Xgeva if at all possible (not sure the medication is available in my country), but it might give me the same side effects or worse. I'm very reluctant about trying zoledronic a second time.
I hope I won't react as badly to ibrance.
Also I was prescribed calcium suplements because my calcium was already a bit low and zoledronic can cause hipocalcemia. But the first dose made my appetite and stomach issues much worse (they were already getting slightly better).
I'm desperate at this point, this feels worse then the first time I got chemo 8 years ago (doxorubicin + ciclophosphamide whatever the right spelling for that it).
Thanks everyone for the support.
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Oh wow, thanks everyone. I couldn't possibly name you all but I'm very grateful that any words I have are of use to you. Since I'm stuck here unable to go anywhere I visit everyone I can, as Maire says, even reaching across oceans, to try to lift the spirits of anyone who needs it. I thank God for the internet every day. Just imagine how it must have been for those who went before us, when they had no one with any real understanding of what it's like, to talk to. And when cancer was referred to as "the C word" because people were so afraid of it they couldn't even say its name! We're so fortunate to have each other
Pat, thanks so much for the encouraging words...again. I'm always thanking you for that. It's great to know of anything we have to look forward to in the future. I know that a lot of treatments are coming on stream but I LOVE the sound of immunotherapy. It gives me such a feeling of relief to know there's more than just changing hormonal drugs and hoping.
I'm glad I could help you Maire. I had an awful week too last week; in fact the last several weeks have been horrible....not because of my cancer, I'm used to that, but because my son and his girlfriend broke up and she couldn't have been nastier to him if she'd tried (perhaps she did). It broke my heart to see my beautiful son treated that way. He's been my carer for three years and is devoted to bringing me back to health, well, enough health to give me a better quality of life. He works from home and he also works for my husband's business as well as taking complete charge of the house, remembering my meds when I forget. I could go on and on. He's a saint and she dragged him through mud. He lost weight and I was afraid he'd succumb to depression but, no! he's made of tougher stuff than that and he's making it through. My way of coping at times like that is to reach out to others and, hopefully, do some good so I'm really glad I could use the energy fuelled by anger at the way he was treated in a useful way.
Frenchhorn....I'm so glad to know you felt like smiling!
If anyone wants to connect on Facebook, PM me. Although, I really love these discussion boards and think we get more support here than anywhere and I find I'm spending more time here than on Facebook. I love all you girls to bits
I love the positivity and the support and love we have for each other. Every time I come on here I get a warm glow inside me.0 -
Pat- Many thanks from me too for the heads-up on combining immunotherapy with the vaccine trials- not sure what the vaccine is, but its clearly becoming something to keep on our radar...
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Hello everyone,
You are all inspiring! Wanted to weigh in on Ibrance for some of our newer members. I'm going into month 24 on Ibrance and Letrozole. Also take Xgeva every three months. De novo Dx with bone mets two years ago.
I've been stable. Down to a 75 mg dose for a year and switched to two weeks on and two weeks off due to low counts. At first, I had intense pain as mets healed. It got better. I did switch from ibuprofen to Tylenol as I was getting rebound headaches. Otherwise, SEs have been manageable and life has been decent. The anti anxiety meds help control the tears. Exercise helps. I do use supplements and eat healthy. Just wanted to encourage new users and let you know life can be good on this treatment. I'm 65 and feel fortunate to have this quality time.
Thinking of those who are younger and those who are going through struggles. Leapfrog, we all are learning from you. Take care of yourself! I'm so Thankful for those on this thread.
None of us want to be here.
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I am also grateful for everyone here. It's good to know we have a place to come and share and others understand what we feel. I heard a little from my MO today about my last Friday PET scan. He had comments posted on the test results page saying that there was some areas of activity in my lung again but it could be inflammation not the BC and once again I have something lighting up in my anal area which is also probably not cancer. We will discuss all this on Friday when I see him. I think at the least I will need a scope of my lung again and a visit to the gastroenterologist. It could be so much worse but I have to say I'm a little worried. I have to close here, my iPad is acting up and keeps deleting things. Does anyone else have that problem here
Faith
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oh Ceci. I feel for you. I find the pamidromate infusions much harder than Ibrance. I was thrilled when the MO I saw for a second opinion said that I only need it every three months.
Ibrance has been SO Much easier for me than capcitabine, or FEC and docataxol seven years ago. Fatigue is only symptom. No nausea, no vomiting, no hair loss, nothing. I get tired but I am 69 and work out at a gym 2x/wk and paddle 90 minutes 1x/wk with a breast cancer dragon boat team. We were all afraid to take our first Ibrance but then pleasantly surprised by the mild SEs.
I suspect that part of your depression is the perceived loss of your career. As a psychologist, it was very hard to be the patient. I know nothing of your career or skill sets. I think than it would be risky to work as a physician with very ill patients when your playlets are low, but there may other things that you can do: teaching, research, consulting, etc. That would use your skills but be safer. I worked for many years in a clinic for young handicapped children. If we got through a whole week without being exposed to body fluids, it was a good week. Then I had a private psychotherapy practice with middle class clients. I wouldn’t have worked at the kids clinic with low neutrophils but I would work at the private practice where the risks were lower. Professional identity is important.
Jo
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Faith, we've probably made this joke before about the scan activity in your anal area....It's just living proof that MBC is a pain in the behind!
Iwrite, congratulations on your 24 successful cycles! I love these stories and I especially love that you lowered your dosage and frequency and still did so well. I'm on Cycle 15 (I think) and my current plan is to scan at the end of November, then take a month off Ibrance in December. If the scan looks pretty good, I'm going to ask to reduce the dose to 75mg. I'm determined to up my quality of life somehow, some way in 2018. No, this isn't terrible and it's certainly better than toxic chemo but I want to have less fatigue. I want my sweet husband to get to spend less time as a caregiver. We shall see!
For those of you on Facebook, I'm Pat Godfrey McRee and would love to be friends there too.
Just a note on calcium. Because of the XGeva, mine was low so I took supplements. Then I learned that Tums were full of calcium so I dropped the supplements and have a few of the Tums twice a day. Calcium is much improved! Of course, they also help the indigestion that intensifies as I get further into the 21 day Ibrance cycle.
About those ears! I definitely have changes in my hearing since I started Ibrance. It is more concentrated in my left ear with a sort of hollow sound at times. When I mentioned it to my husband he said he noticed I wasn't hearing as well. It's not dramatic, just interesting that it has happened to so many of us. I've long forgotten my study of biology but will look up how the ear works. We all should probably tell our oncologists so they can note this in the literature.
Tonight I will say special prayers for all of you who are in pain. I have known so many friends who, even though their oncologists were excellent, found that pain clinics helped them tremendously. My oncologist saw an acupuncturist for his back pain.
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Bigbhome...you sound like you have a lot of pain to deal with, I probably just talk about it more haha! I can relate to the arthritis pain. I have it in my neck and it's awful. Funny you should mention what your MO said. When I went to mine ...for pain management issues, mind you...and he said he'd like to raise my dose of Fentanyl, I said, "I worry about being on too many drugs...." He turned to the trial nurse who was sitting in and laughingly said, "She thinks I give her medicine for fun". A very kind and clever way of sorting me out, I thought!
Iwrite....thanks for your encouraging words. You're a year ahead of me, de novo with bone mets. My disease is stable - no progression but no regression and it's really good to read those words, "as the mets healed". You can't imagine what that did for me! My dose has been lowered to the 100mgm one but I still need three weeks on and two weeks off. I had to see the registrar last time as my MO was on leave and he said it could take two to three cycles before I get to the stage of only having one week off. This is only my second cycle on 100mgm. I had eight on 125mgm.
Faith....praying for you and thinking of you.
Ceci sweetheart don't give up. Please! You haven't given Ibrance a chance yet and I'm sure you'll find it a lot easier than you're expecting it to be. My life is really quite good because I know that Ibrance is in there helping the Letrozole do its job. I trust it implicitly. It's all very slow acting so I have to be patient but I really believe it will kill,kill,kill, those cancer cells. Those little devils have no chance. I have Denosumab injections for bone strengthening. I can tell you that I feel a million times better than I did this time last year. It will be one year since my bilateral mastectomy on Friday, the day the surgeon got rid of the tumour that was killing me. Now it's time for the Letrozole and Ibrance to do their work. Don't give up, darling, hang in there. We're with you all the way but, equally, don't feel that you have to be a hero; in other words, don't feel you have to pretend to be ok if you're not. We all understand. We've all had our dark times.
Pat, I think it would be great to be Facebook friends. I'll look for you.
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This is my Facebook URL if anyone is interested. https://www.facebook.com/profile.php?id=100008682813392
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Faith-840 I have that deleting thing often but always on my iPad. It deletes from where I am keeps going. I hit keys until it ends then type carefully. Have never commented as there always seems something more important. Thanks and will be interested to hear if anyone else has had this happen
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That’s a frequent problem on my iPad Marian. Drives me nuts when I lose half of a carefully worded post. I have found that if I hit preview it stops and I can go back in with out the gremlins removing the words.
Pat (2)
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This is probably a ridiculously silly suggestion, and no doubt you iPad users have tried it, but have you re-booted to see if that might fix the problem? I have found that to be a sometimes magical solution to issues with all of my many devices.
PatgMc, thanks for the article on BriaVax! All is so encouraging! On it on Facebook!
Leapfrog, what is your name on Facebook so that I can find you?
Ceci, I have nothing to add except my agreement with all....and give Ibrance a chance to work. Hang in there, girl!
Hugs to all from VA....
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And Faith....good luck on Friday!!!
xoxox
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Hi Ladies... I feel like this place gives me one big, warm group hug of encouragement, persistence and humor. To those of you just starting Ibrance... I was where you were 1 month ago and today feel pleasantly suprised and grateful for the drug that we didn't have access to just 2 short years ago. I go to onc on Thurs. to see if my tumor marker has gone done, but have experienced better breathing, less coughing and otherwise fewer symptoms, curious to see if bloodwork matches how I am feeling.
My SE's .. fatigue, dry skin.. always thirsty (all very doable) and just ready to start 7 days off first cycle
Iwrite.. hope to do this well on cycle 24.. your post gives me lots of encouragement... I'm 60 and wondering if I should retire early to take time to visit kids, grandbabies etc. Onc says it's better to stay working... and thinking about what you said about job identity Hobbes. Kind of deep questions this morning... do I just live my life as status quo... or do I choose my priorities and make time for them - Thanks for listening to this stream of conciousness....
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Good morning...
PatG...Thanks for sharing the article. These articles are so encouraging and keep us going!!
Amarantha...I don't know anyone with skin mets. What does it look like? Will be with you for your scans today...wishing you the best outcome! Keep us posted.
Ceci...I hope the blood work is done sooner than later. If the creatinine level is elevated, you will be able to get fluids to rehydrate. I had daily fluids for a couple of weeks...the difference was unbelievable. I know how bad you feel because I've been there. In fact, the morning of my granddaughter's wedding, I was at the hospital getting fluids and praying that I would make it through the evening. They added something to my fluids to "guarantee" I wouldn't miss the wedding. I made it through and felt good, even though I still had no appetite and couldn't eat. So, hang in there -- don't give up. They were ready to put me in the hospital, but my oncologist said that was the last thing he wanted to do....so, it was daily trips for fluids. I was never a water drinker -- but, I do much better due to fear that this could happen again. I will find out Thursday, when I see him for my bone marrow biopsy, if he got approval for the X-Geva. He said he would not take a chance with the Zometa again. So, it's one step at a time.
Faith...Will be with you on Friday!
Hope
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aramantha:
I am newbie (just diagnosed 10/27)! Stage IV Mets & awaiting delivery of Ibrance & will begin cocktail soon. I do not have skin mets; but just wantied you to know I feel the same as you about this medication regime & big “shout out" to those you've named and I've read posts for about 3 days straight after about a 5-6 year break; which was extremely helpful in my gaze and processing this Dx.
I never posted back in 2010-2011 as I was bit shy; but now I'm too afraid to be shy; despite being positive that this is my best shot & huge thanks to all who post. The Dx is bad enough to hear coupled with “...there is no cure..." despite the truth in that; this regime (I'm hoping) is close behind in that I guess the goal is to at least make one feel “cured" & I'm now summizing that's called NED! All-my thoughts/prayers are with all who are active in this link and those “shy" ones as well.
I’m wondering also If anyone has Mets to Lymph, Mediastinum & Lungs & diffuse pleural nodes & has gone through or is going through this treatment regime—please either post here or PM me (I also have started my 1st thread asking for just that advice, stories from similar Dx or any other Dx are welcome to share whatever you think a “newbue" Stage IV should know either related to Ibrance Femara or day to day family affairs etc! Getting medical team in place! Also, anyone who got second opinion before starting this regime & thoughts on the need for it and what that means in terms of delaying treatment for even couple weeks or months? More scans this week for me; ugh!'
Thx very much for all your support and positive vibes for good week for everyone! My apologies for the long post
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Hi, everyone - I have a quick question... don't know if it's been addressed before (I started here in late July, and haven't read all the pages!), but has anyone else gained weight since being on Ibrance & Letrozole?
I'm exercising more than I ever have (3-4 times a week vs. never) and eating so much healthier (haven't had any alcohol, soda, or even CHOCOLATE since August!), walking every day, taking stairs instead of escalators, etc. And here I am, not just at the SAME weight, which would be discouraging enough, but having GAINED six pounds in the last three months!
The only side effects I'm experiencing are fatigue and dryness (skin, lips, hair); my appetite is fine. My cousin, who also has MBC, jokes that I'm the first cancer patient she's met that's gained weight on treatment...
I see my oncologist next week, and will ask her opinion, but I just figured I'd ask here, too, since so many in my day-to-day interactions have mentioned it ("Wow, you look good - we expected you to be so thin..."). Keep in mind, I'm overweight to begin with - 5'4" and 216 pounds - so I guess people expected me to start wasting away...
My husband says it's probably because I now eat breakfast every day, which I never did before, because I take my pills in the morning. He keeps telling me not to worry about it, because as long as I feel good, I shouldn't worry about losing weight, and I know DIETING isn't healthy, but eating sensibly just isn't doing it for me!
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Welcome, Bailey! You are among a lovely, warm and caring group of supportive people. We are with you emotionally, and you'll gain so very much good information and knowledge. Go back a few posts and open the link from PatgMc about BriaVax. So much going on in our favor! I hope that you'll find Ibrance as completely tolerable as I have (Ibrance, Faslodex [fulvestrant], and Xgeva). I'm on my next to last capsule of my 9th month. I feel almost normal, and I wish that all others did as well. My only SE to date is being more tired toward the end of the day. I hope that if and when that changes, there will be something else out there to take me safely on until a "cure" is found. We have your back....
Hugs to you and to all other newbies and to all others as well-
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I had to be off of ibrance/femara for a total of 3 weeks. When I started back on TX eleven days ago, I was surprised that I started having the same SE I had at the beginning of TX ten months ago! It feels like I'm starting over. Has anyone had that happen?
I'm having mouth/lip sores, nasal bleeding and cold like symptoms. From my own experience I know these will go away in about a month. I will start taking the antiviral med, more mucinex and ointment for lips.
I'm guessing the three weeks off got all the TX out f my system and my body is just acting like it's never seen these drugs before. The Ibrance dance? But, I know some of you have gone off TX for 3 weeks or more.
Bailey5. I do have mets to lung, pleural effusion and to areas in my chest. Also in my liver. TX is really working for me. At eight months my scan showed a good response. The mets showed about a third less uptake on PET. I'll have another scan in December. The SE are not too bad and/ or you get used to them. Some, seem to go away after the first month, fatigue stays but doable most days.
I wish I understood more about that immunotherapy trial. Is it for those of us w ER + HER-?.
Prayers for all of you.
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Ciaci I gained ten pounds on Ibrance and Faslodex even after I also had surgery in June. I attribute it to the fatigue which has really diminished my ability to be physically active. Before Stage IV I did go to the gym three times a week. All those muscles have since turned to mush. I'm hopeful to get on an exercise regimen again but honestly it all depends on how I feel. I try to eat healthy and also allow myself chocolate from time to time.
Tanya
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Leapfrog your messages are always warm.and comforting, thank you and who everyone else who's been that supportive.
My onco told me to go the emergency room to get saline solution IV and some calcium a potassium because both were low. They didn't examine my creatinine even though they said they would so I'm a bit frustrated about that. they also will give IM ranitidine to help with my stomach.
Nonahope since you had a similar experience I was wondering of they took you off zometa right away, if they changed to Xgeva or if they just left you alone. I can't imagine doing zoledronic acid again, it's been hell and much worse than I expected. Now I'm worried that I might have a bad reaction to ibrance when the time comes.
In general, what do they do if you can't tolerate a medication? Would this affect my outcome?
Thanks again everyone, you are amazing.
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Ciaci,
I'm in the same dilemma as you-I exercise a lot, have cut out alcohol, caffeine and sodas, eat lots of veggies but still I keep gaining weight! Very frustrating but I don't want to go on an actual diet. I mentioned the weight gain to my regular doctor-I could tell she was skeptical about my eating and did not attribute it to the letrozole. I lost a lot of weight at first when my cancer spread so once the Ibrance started working, I ate whatever I wanted and put on the pounds. Now I can't seem to get rid of them. Oh well-I'm not really thrilled with my big stomach and thighs but glad that I can be active. I'm at least holding steady now-I really don't want to buy new clothes!
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It's so good to read of your good results right now. I'm feeling a little more down as I got the results of my Dexa scan and I know I shouldn't be surprised as so many of you have bone loss but it's just one more thing. There is osteoporosis in my neck area and osteopenia in the lumbar region which I guess is good news. MO says he wants to treat with Prolia, anyone else here on that? I wonder if that's easier than some of these other bone building drugs so many of you are on. He says we will discuss on Friday. I need to make a bunch of notes with questions. Anything you all wished you had asked before starting these drugs?
Faith.
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Nonahope I got the creatinine and other tests done and will get the results this afternoon. My doctor wanted to make me stay at the hospital too but I prefered to go daily for fluids. I have to get calcium infusions twice a day until my levels are normal and/or the zoledronic acid stops making my levels drop (since oral calcium was making my stomach and appetite even worse). But it's still better to be able to go home at the end of the night. My doctor told me I would have to get Xgeva from the states and that it's super expensive but I'm willing to try as long as I never have to take zoledronic again; but my onc keeps insisting in trying to find ways to make it much manageable. I'm personally not interested, but she has the last word.
Thanks again for everything everyone.
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Faith, I take Prolia injections every 6 months for osteoporosis. I do not have any side effects from it. Will have Dexa scan next year.
In Oct 2016 diagnosed with widespread liver mets, T12 lesion and tumor cells in pulmonary arterioles. Currently on Ibrance 100/ Letrozole.
Last week I walked, jogged (okay ..very little jogging, but I am owning it) 10 miles. Took freaking 4 hours.
As of today, I am NEAD.
My gratitude and love to all who post on these boards. You have given me hope and compassion on my darkest days and support and joy when my results are stable and/or regressing.
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Faith, I was on Prolia for a few years before osteoporosis dx when I just had osteopenia. My MO told me it is just a lower dose of the same drug as Xgeva. You can't take them both at the same time because that would be too much.
I'll be over in the steam room describing the logistics of my Pet scan this morning. Let me just say the hospital, which already doesn't have enough handicapped parking spaces, had more than half of them blocked off for "painting." Needless to say, no one was painting.
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Ceci....I had only 1 infusion of Zometa. That's when my problems started. If they do a CMP, your creatinine level should have shown on that...I am waiting to see if I can go on X-Geva....very expensive. If my insurance doesn't cover it...I'm doomed. My onco will not take another chance with Zometa. Please let me know what your creatinine level shows. Mine zoomed up from the Zometa. My onco was concerned enough to send me to a nephrologist. He took me off of two blood pressure meds I was on...thought that might be adding to the problem. I've been monitoring my BP at home and it has been in a good range. I've come to the conclusion there will be ups and downs on this journey. We just have to deal with the downs, as they come.
Question for those of you who have had a bone marrow biopsy. My onco will do this in the office on Thursday. Do I need to have someone with me to drive home?? I just hate to burden people and like to do as much as I can on my own. I know there may come a day when I will have to depend on others for help, but I'd like to hope this is a long way off.
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HI everyone, PET scan somewhat of a horror show today, to get the IV catheter in, three different nurses had to try in at what seemed like a dozen places : three or four places in the usual place in the crook of the of the elbow and the side of the elbow, about two on the back of the hand, twice in painful places on my right foot, once in the inside of the wrist, and finally in the lower arm. If that had not worked I was ready to call it a day. They can only prick my right side because both my left arm and left leg are swollen. The veins kept popping or retracting. Catastrophe.
Bailey 5, thank you so much for responding to my post. I am so sorry that you have to be here, and for your diagnosis, but very grateful for your company. My mets are to my skin over the scar of the ex-left breast, as I wrote, into the skin and tissue of the right breast, and to the lymph nodes of the right side. So far nothing below the chest but just had that PET scan, we'll see. The skin mets look like colonies of red and pink or pinkish-brown bumps that form plaques, and then more bumps form on top of the plaques. It feels plasticky and rubbery to the touch. Biopsies at diagnosis last Dec showed it was 'indolent' but according to ME it was steadily growing before I was diagnosed and all during the time on Afinitor (10 months) - I have been yelling into a padded wall about it for months, and the more I insist the less I am audible. But at least now its been noticed and I am on Ibrance, somehow I have a good feeling about this. Had the first shot of Faslodex today, wow, that did not hurt at all because the nurse (a very very handsome and funny young man !) was so careful about it, but it took a long time to get all that fluid in, and that hurt his hand ! hahah. So anyway, this evening I feel awake and hopeful, after a long day of headache and slumber and famine for the TEP.
Sandy Beach does NEAD mean No Evidence of Active Disease ? (I'll look it up) If so, that's totally fantastic, and gives me hope.
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