Ibrance (Palbociclib)
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I see I've missed a lot of posts. Husband...I too have had the red rash but only on the tops of my feet and on a couple of occasions a red area on my cheek. The facial one was only for two cycles, the feet one lasted a bit longer than a year and seems to have gone now. I also used to itch. I would wake up at night scratching my legs and arms till they were red raw and then they'd need extra moisturiser to soothe them. My rash isn't itchy, just the skin generally but that seems to be settling now I'm on my 19th cycle.
Pat, I also thought you were a bundle of energy till I got to know you on Facebook. I also have a little nausea but Zofran does a good job, fortunately.
I don't know whether this link will be of any use but I'll post it anyway. It's a newsletter from Breast Cancer Trials. If you turn the pages there's one on Immunotherapy but it needs to be clicked on and enlarged.
https://www.breastcancertrials.org.au/webforms/impact-program/newsletter/impact32
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Hello,
When I had my primary when I was 38 yrs old 20 years ago I had my ovaries removed to suppress estrogen. I went into full blown menopause and the hot sweats were unbearable. My doctor said an anti depressant drug named Effexor ( venlafaxine) for some reason had also shown in side effects to stop hot flashes by 65%. I started on a tablet a day 75mg and it worked like a miracle.
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Product Plug! Ibrance/Faslodex cause severe drying of skin, mouth and everything else. I use Biotene regularly and it helps temporarily but my dentist gave me a sample of these Xyli-melts and they seem to work pretty well. I ordered more on amazon. They are tablets that you put in your mouth when you go to sleep and they dissolve over night. Just wanted to share in case others were interested!
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Hello all! I have been off the boards for a few months but wanted to share some very good news with you all. Since May — all three of my boys graduated from their respective programs including my youngest who is now a cadet at the US Air Force Academy. My oldest graduated college, has a great job and is engaged, and his fiancee is expecting our first grand chilld (grand daughter) any day. Our middle son who has had severe developmental disabilities since birth has moved out of our home - and into a supported living situation that is working out extremely well.. And my husband and I both have retired and moved to our dream retirement destination - something we have worked very hard and saved for a lifetime to do. But most notably - my scan this week showed NO sign of metabolic disease. When I think how bad things seemed last year, I can’t believe I have such hope and optimism. I feel very conflicted posting such good feelings because I know that there may be some of you who are having a rough time of it. If that’s the case - I am praying for you and feel your pain. For those of you going through tough times - hang in there! It’s possible to see brighter times ahead of you. But I also hope that posting some happy news can lift the spirits of many. You ladies mean so much to me even though I don’t post. I read your stories and cry, smile, laugh, and pray right along with you. I do know that I will also have dark days ahead of me. But at the moment I feel very blessed and happy where things stand.0
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LA894, I'm so very happy for you, your boys and your husband! May you have many more healthy, happy days!
Having a granddaughter is the best thing in the world! Buy stock in American Girl!
Love from PatGMc
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LA894, we LOVE good news, so thanks for posting. Congratulations on your new grandbaby and the success of your sons. I know how important this is. And, congratulations on your NEAD results. You deserve this, and provide us with hope and a smile.
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LA894 - thanks for lifting my spirits and sharing your fantastic news! I have an 11 year old in 6th grade and I hope to someday post about his life achievements too!
Soooo happy for you and share your joy!
Love to all,
Laure
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LA894, WHOOPEE!! You give us all hope for future successes!
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LA894, wow, that's amazing. So much good stuff happening.
I got my Pet scan results from my MO yesterday and all was good, mostly. One of the lung met FDG uptakes went from 1.0 to 1.7. She said that was tiny and nothing will be done treatment-wise. My ANC was 860 so not quite high enough to start my next cycle of Ibrance. That has never happened to me before so a little disconcerting. Retest next Thurs. and off we go.
My first cataract surgery was Monday (rant about that in the steam room, another disagreement about my port) and things are ok. Second on the 22nd. I wanted my vision to be instantly perfect but ... well, no. It will be a month after the second surgery before I can get a new glasses rx. In the meantime, DH is having to drive me everywhere. It seems like a very long process but the payoff should be worth it, right?
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Jaycee, I'm glad your doctor reassured you about the small change in FDG. Mine says he would never change anything based on that. I'm happy you're getting the cataract surgeries behind you. How great it will be to see perfectly again!
Love from PatG
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LA894...never feel bad about giving us good news. That gives us hope and I'm thrilled for you!
I went for an ultrasound on Thursday because of the very slight postmenopausal bleeding I've been having off and on. Mainly off. The results showed a slightly thickened endometrial lining of 6mm and that my ovaries are tiny (thank you God) and not enlarged and that 99% of cases like mine are NOT a sign of cancer. There is an old calcification, which isn't a problem but Letrozole may be causing it to shed. I have to wait until my oncologist returns from leave for him to tell me when is the best part of the Ibrance cycle to have a hysteroscopy. I'll probably have to add an extra week's break to my two week's break at the end of a cycle. There's no hurry but my husband being a gynae is going to do it and everything needs to be done yesterday with him! Just the same I'd rather have him do it because I know he'll be careful. I have lichen sclerosis and oh boy the ultrasound probe hurt! I need to be heavily sedated to have anything larger inserted! I hope this isn't TMI but it apparently can happen with Letrozole as it dries out the uterine lining and shrinks the uterus.
Jaycee...I've only heard good things about cataract surgery but that it apparently takes quite a few weeks to adjust.
Lauren....XyliMelts sound good. I have a cup of water next to my bed and I must wake up at least 6 times each night to sip water because of my dry mouth. Not having to do that would be a bonus. Thanks!
My son and I have done a lot of research and I know we're not qualified to make a diagnosis but it jumps out a mile that my husband is a narcissist and, I'd go so far as to say, has Narcissist Borderline Personality. Being with him again on Thursday reminded me why I came to live on my own. It's sad because he's a nice guy but with age he's getting worse at wanting his own way all the time and resorting to bullying when he doesn't get it. I believe my son and I escaped at a good time and we need to set up boundaries. Not easy after placating him for 40 years but, with right on my side, I feel strong. He's still lying about his female companion. He has simply asked her to go to another city to holiday for a while (on OUR money) until my son and I cool down. Then he mistakenly thinks that it will be back into the status quo. It's sad to look at someone I know so well and see a stranger.
But.....life is much better now that I only have to spend time with him when it's absolutely necessary.
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Leapfrog - I hope they carry xyli-melts down under and that they help you!
I think you are dead-on with your diagnosis about your husband, based on what you have described. I’m so proud of your son for his support and in awe of you for your strength. It’s amazing how a little distance can help us see things so much more clearly as you have experienced with your recent encounter with him. I hope he is gentle with you for your procedure and that you get the ‘all-clear’ as a result.
Jaycee - hang in there with your surgery.... I have a feeling your vision will be much improved in time!
Love to all,
Lauren
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Sooooo ladies I am having a huge dilemma......before I was diagnosed stage IV in August I was living an average life, felt pretty good most days and never would have thought in a MILLION years that I had cancer growing in my body. Now I am on a regimen of medications, have monthly Oncologist visits like the rest of you lovely ladies but I absolutely HATE it and I just want to go back to my life before all of this!! I don't want to take all these medications and do all this. I know it sounds selfish because I have a family to think about but I'm just soooo lost right now!!! I have stress daily enough without all of this added to it and I just have had it. And I realize I've only just begun this whole journey and a lot of you have been fighting a lot longer than I have and probably think I'm crazy for not wanting to try. Did any of you feel this way?? Did you feel fine and then just get your whole word rocked? What do I do??
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Hi all. Catching up on posts. Good to see everyone posting and that this thread is so active. Congrats LA894 on the good scans. Jaycee- good luck on the upcoming cataract surgery and you will be glad you had it done. About the rashes/ itchy I cannot help. Sorry. No itching here.
So an update on what is going on in my neck of the woods. My CT was "stable". I met with my MO and PCP yesterday- MO monthly appt and PCP 3 month appt. I asked the MO about the fluctuations in the measurements of the liver mets--fluctuation up and down of 4-5 mm when you look at the trend of the 3 month scans. She said that the measurements are not electronically calculated by the machine but measured by the radiologist reading that scan so they can be off some each time. I then asked how we would then determine if there is progression and need to change treatment plan. She said it would have to be a larger measurement change--she did not say by how much. Then we talked about monitoring the bone mets. The insurance denied a PET scan ( last one done over a year ago ). So she wants to do a bone scan and maybe a MRI. The PET last showed an osteolytic lesion on C2 spine and the CT doesn't go up that high to see how that is doing. I have pain in my neck a lot. Also I am having some discomfort in the rib area on the right side and she said there had been no evidence of mets to the ribs before. Of course, we will have to get approval from the insurance company for the bone scan and MRI so who knows if I will really get the tests. I once again asked about a yearly mammogram on the remaining breast and she said we would just have to see if insurance would cover it for a Stage 4 patient. Then we discussed my labs. The TM's are still fluctuating some---higher now than last month by a few points. And my platelets are trending down- still within normal range but lower on the scale each month. We are going to watch that. She said Ibrance can do that. She then told me to start wearing a mask when out and about because we are seeing the first influenza cases of the season in our area. Last WBC 1.8 and ANC 900 ( and these are after the 7 days off Ibrance ).
Then went to see the PCP. Good guy. Been my PCP for 20 years or more. But, good grief, conflicting information. He asked if I had been to see my GYN for the yearly stuff. I told him about the mammogram issues and really if -God forbid- they find something on the mammogram would they really do everything ( lumpectomy or mastectomy, chemo, etc ). He said " of course" and that I am 48 years old and stable on the latest scans so why wouldn't we be aggressive with the findings. WHAT. This is not what I have heard, been told before, or read. Sometimes I go away from the doc visits more confused than ever. We discussed the shortness of breath with exertion issue. He said the pulmonary function test done since last visit with him was ok and he doesn't know what is causing the issue. I told him about how some of you have shortness of breath with exertion also and we think it is a side effect of Ibrance. He just shrugged that off. He did say he has patients that use turmeric for arthritic pain and it wouldn't hurt to try it for the pain I have ( A/I related or bone mets related ). I need to get some and try it.
Sorry for the long post. It is nice to bounce things off you all and see what recommendations you have. And hear how your docs feel about things and how you are being treated for various issues.
Have a good weekend.
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Crazeejane-
This is just what I mean about this wonderful site. We understand like no one else can. I totally get how you feel. I was Stage 4 de novo. Not only cancer growing in my breast, but a baseball size tumor growing in my liver and mets in the bone. I had no idea this was going on in my body. I want my old life back too. I try to talk with my sister and she just tells me to "forget it for a while" and doesn't like me to discuss things with her.
Can you voice your true feelings to your hubby? How about a counselor that your MO can recommend? Maybe some anxiety meds for now---nothing wrong with that. I don't remember where your cancer is- and not on your profile. Is your cancer doing well on the current treatment plan? You can have several more good years from what we see on this site. I am 1 year into this. I am sure others will chime in with advise. Remember, we are here for you. You can PM me anytime.
Hugs.
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Crazeejane, I felt like you too. Dx stage IV de novo with no idea this was happening and just didn't want to go through all of this. I loved my job and my life. But I began to realize that taking oral meds and an occasional infusion was not as tough as multiple surgeries, so I kept at it. I am now 28 months in and feel pretty good most days. Yes my world has changed, but I can still travel, shop, walk, go out to lunch and dinner with friends, sing in the choir, and love on my family. My ses have improved from the first few months and are very tolerable. I have met new friends (especially here on this site) and strengthened friendships and even relationships with family because of this terrible disease, so I guess there is some positive to it all. So I am saying to give it a try and see where it takes you.
I agree with Candy that it helps to find someone to talk to. Many cancer facilities have counselors and docs will gladly help with anxiety meds at the beginning. You matter to us and we want to see you flourish. Feel free to pm any one of us. I don't know where you live, but you might even live close enough to one of us we would be happy to connect. Hugs!
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I am from Pipestone, MN which is a small town in the SW corner of the state. I have bone Mets in my pelvis, hip, spine, clavicle, and sternum. I was initially diagnosed with ILC to the left breast and the bone Mets were found about 10 days later when I had my first PET Scan. I appreciate the responses to my rant of just wanting to throw in the towel. I guess stress will do that to a person at times and lord knows I have a massive amount of that on a daily basis without the cancer too. I’m pretty much the sole caretaker of everyone in my household including my husband so I haven’t always had the time to look out for me. Now that I need to do that I a lot of times get made to feel guilty by my kids because I have told them that I can’t always handle all the stress anymore. I have teenagers that constantly fight and it just gets to be too much at times. To say I am seriously overwhelmed is an understatement!!!
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LA894 thanks for the great news.
Crazeejane its an emotional dilemma that we have to figure out. I like to see my husband happy etc. and so I don’t want to confide in him “all the time”. I often get the feeling of dread in my stomach and do some deep breathing counting aromatherapy or something to get past it for the moment. I try to stay busy and that’s what works best and for the longest duration. TV commercials this month for BC are over loading my psyche so I’m limiting watching. It was already a cancer medicine commercial every hour before October.
When I first got BC back in 2003 my husband realized how much stuff I did. He cried and apologized for not helping all those years. He does more now. That’s all I can say really dear heart. Take it easy. Use whatever you can use as a stress buster. CBD oil Cocktail. Antidepressants. Whatever works.
Hope you have a good weekend
Tanya
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Crazeejane: So glad you found this site, especially since you live in a small town, as I do. There is a cancer support group in Helena, about 50 miles from me. I attend meetings when I can but don't find anyone there that has MCB like me. Besides this group, you may find support locally. When I was first diagnosed, I had the same feelings. Could this be happening to me? Did I just have the flu? Did my oncologist misdiagnose me? Anyway that was 5 years ago. I will be involved with this the rest of my life. Your kids will grow up (and hopefully quit fighting). You need to find your quiet, peaceful place, keep the faith and everything will work out for you. Keep in touch with this group - everyone is supportive which is important.
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Crazeejane: PS There is a cancer support group in Sioux Falls (about 48 miles from you). You might want to look into the group to see if it's something you want to participate in and see if their experiences can benefit you. I Googled them on the internet.
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SanJF, gagging cough was symptom that got me on the Stage IV train, after a couple of false stops (asthma, COPD) along the way. After a couple months on I/F it resolved. I can't remember how long you've been on this tx, but hoping it gets better for you too. Unfortunately for me, the cough has returned, even though my scans are stable. I'm in the process of hunting down the cause, but in the meantime I'm using a rescue inhaler, which seems to help a little. Also at bedtime I take prescription Robitussin with codeine, which quiets the cough enough to get some sleep.
Jaycee, can you get by with readers while you await your next surgery? Get a cheap pair and pop out one lens. If you already use prescription glasses for reading, you might have to pop out the prescription lens and layer the two glasses. Yep, I did it.
LA894, woo-freaking-hoo for fabulous news!
Crazeejane, when we get the news that lands us on these boards, it's like being handed a big bag of crap, with no instructions and no tools. "What the hell am I supposed to do with this??" The early days are especially stressful. Allow yourself the space and time to grieve. Get a medical team in place that you trust. And come to us with any questions, and unconditional support.
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Jaylea, I hope your doc can call in Tessalon Perls at the highest dose for you...miracle workers for a cough without the hangover from codeine.
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Crazeejane / I totally understand where you are coming from. I was 15 year out from my original dx and after all those years of 'no progression' I was completely shocked when my bone met showed up on a scan. i had no pain... felt completely fine and struggled to believe it was true. I have no time in my busy life for the 5000 new appointments I have to now squeeze in but yet I find a way. I am now about 10 months into this and like Jaylea said, it does get a bit less daunting over time. But there are days when I wonder how long I can keep this pace.
Candy - for sure some conflicting info among your docs.... just FYI my onc did tell me we will be doing a mammo and breast MRI this year, we always have. I was not expecting this and he responded to my shocked look and said - we plan to have you around a long time, so we have to check for new breast cancers too. It was comforting. I hope your insurance covers your bone scan. It seems to me that is minimally required.
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Oh and PS - my little goalie took it upon himself to support mom by wrapping his stick in pink tape for today's games. 💗
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Wow, Lauren, you raised that kid right!!!
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Hi All,
I logged on to post a clip of Hope Rugo talking about the new PI3K inhibitor drug that is petitioning for FDA approval because it met the primary endpoint of the clinical trial. However, Novartis has not released the numbers from the trial as yet, so we don't get to know how long it improved progression-free-survival. We probably should not expect a big result, based on the long line of failures of similar compounds, but they might do something miraculous in combinations, and apparently at least one patient is four years out on that drug, so it can do great. The numbers will be coming out at ESMO2018 on Oct 20....
https://www.onclive.com/onclive-tv/dr-rugo-on-path...
PS Updated, to add that anybody going onto this drug should know that it will work waay better if you steer clear of sugar and/or do a regular prolonged night-time schedule (such as move to a water-only diet after 6:30pm); this may also allow you to avoid having to be put onto metformin
https://www.nature.com/articles/s41586-018-0343-4
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Hello ladies!! After a week from emotional turmoil I must say that I am feeling a bit better about things thanks to many of you. I’m on the last 6 hour stretch of my 36 hours of work for the weekend and am looking forward to tomorrow as I am heading to my Aunts place and she is going to do my oldest daughter’s Senior Pics on Tuesday. Also today is my oldest son Spencer’s 19th Birthday!! It’s always been an extra special day to me because that is when I became a mom for the first time. Lots of positive things which is nice as it take some my mind off of the not so positive things. I send my love and we’ll wishes to all of you for the upcoming week!
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Hi all,
Been a long time since I've been on the boards, hate seeing so many new ones here.
I was on the Ibrance/Femera trial for 30 cycles before it failed me & let in a liver lesion. So I'm off on a new trial, Alpelisib & Fulvestrant.
It was a fairly easy drug for me to tolerate other than my first cycle of 125mg which put me in febrile neutropenia so the rest of the cycles were 100mg.
all the best, cheers, dee
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Hi, I’m on my off week right now and I’m thinking of switching the time I take my 100 Ibrance. I have been taking it at dinner but I’ve been finding it hard because I’m never really hungry and food sounds yuck to me. So, I was thinking starting month 21 taking it at breakfast because I always have oatmeal at breakfast. I haven’t updated my stats lately. I am also on monthly Faslodex shots. Any thoughts or suggestions on making the change?
Thanks in advance.
Suzy
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Stllivin, someone can correct me if I'm wrong but I thought you were supposed to take it with some fat. If I just made that up, somebody stop me!
Love from PatG
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