Ibrance (Palbociclib)
Comments
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There are mixed emotions here feeling sad and burdened for those with progression and joy with all of the good news. It is the nature of the beast!
For all of the newbies, here is something to add to the pot... I had been feeling Ibrance fatigued and was going to discuss lowering my dose with my onc next month (I have been on 125 since the beginning), but the last few days I have felt good. There is still fatigue when I do extra work, but I feel better than I had in a long time. So I am going to hold off and let the Ibrance continue to do its work. Maybe for me it just took patience...a lot of it! Saturday I will travel and attend a remembrance ceremony for my best friend who passed last month from cancer, Sunday I head off to New Orleans for a few days of R & R with my DH, and my kids all arrive for a week-long visit on the 17th so I am hoping this feeling continues and is not a fluke. The timing is good. What a roller coaster ride!
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My wife has terrible sleep disturbance / insomnia on ibrance. We haven't figured out the pattern, if there is one. She usually has a few days or more where she sleeps well, but then returns to a pattern of very poor sleep. She takes sleeping pills, has tried and has on hand several varieties of them. She takes melatonin, but low dose, high dose, medium dosages, slow release, normal release etc. She's tried medical marijuana, Indica, in liquid and edibles, and all it does is gets her high. No improvement in sleep. She does accupuncture, osteopath, massage, just about everything we can think of. If she could sleep properly she would feel so much better. She is currently on 75 mg Ibrance.
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Husband11, has your wife tried Benedryl? If I struggle to get to sleep it usually helps. I was told it was safe. I am on 125mg. I have trouble getting to sleep probably because I take my Ibrance with dinner, but it is the most consistent meal for me.
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Husband11......I had the same problem with sleep...would wake up about 2AM and could not go back to sleep. Tried Melatonin but did not work for me. I had a scheduled appointment in Dec with my primary dr (Internist) and mentioned to her the no sleep. Did not want to go on any major sleep aids that would be addictive. She gave me a prescription for Trazodone 50 mg. I usually take half a pill and it seems to work. No grogginess in the mornings. I had been taking Aleve PM and it caused a lot of fatigue. My Onc says that it builds up in your system meaning the Aleve pm. After taking for four weeks I was able to not take every night. Now just when I feel I am not going to be able to sleep. After looking up the info on the drug it is used for anxiety, but the dr recommends to a lot of her patients for sleep problems. My Onc has approved for use. Hope this info is helpful.0
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Husband11-What helped me get over the sleep difficulties brought on by Ibrance was cutting out caffeine and alcohol. I was a long-term coffee/diet coke drinker and enjoyed almost daily drinks so this was a huge lifestyle switch but it stopped the disturbances to my sleep. For some reason, either the Ibrance or the Letrozole made me very sensitive to caffeine. On very rare occasions I'll have a little regular coffee or diet coke but no alcohol at all now. I think undisrupted sleep is very important for our healing so it was worth the major lifestyle change. Hope your wife finds the key that will help her sleep better.
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I'm pretty sure that the sleep problems are caused by letrozole (or whatever AI) and not Ibrance. I was prescribed 1 mg of ativan about 20 years ago (way pre-cancer) by a very good PCP who had since left my town. (The good ones always leave.) She said to take it only when I couldn't fall asleep. Works in about 30 minutes. I didn't have sleep problems for a while but when I did again with letrozole/Ibrance. My therapist prescribed .5 mg of ativan to take every night. The 1 mg made a a little groggy/wobbly in the AM but the .5 does not. Just another option, of which you now have several.
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I also believe that it is the Letrozole causing the sleeping problems. During my last 2 weeks off Ibrance, I could literally not sleep at all any more. After I restarted Ibrance and the fatigue kicked back in, my sleep became somewhat better again, however, still not good. Additionally, my sleep becomes worse, when my mind is still full of thoughts, which may be worries about mbc as well as minor todos for the next day or an evening at friend with much noise, talking and other input. I have not really found a way around that, but I do take Zolpidem (5 mg), if I had too many bad nights in a row just to get some rest. I do not want to take them daily, because I a afraid of getting addicted to them.
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Re: Sleep Problems
Forty years ago I found an incredible cure for insomnia, taught to me by a psychologist. He made a recording for me to use with this technique (a good, old-fashioned cassette tape!). There probably are pre-made recordings available now. This book is a new, improved version of the one I read and found so helpful back then:
https://www.amazon.com/Beyond-Relaxation-Response-...=sr_1_2?ie=UTF8&qid=1517612327&sr=8-2&keywords=relaxation+response+by+herbert+benson
Yes, it takes some practice but, once you've done it for a while, you can relax any time.
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From my limited experience so far with medical imaging, the chest CT with contrast shows my tumour the best. I had an ultrasound which showed nothing, 2 weeks later an MRI which showed enhanced tissue, 5 days later a chest CT with contrast showed the lump then core biopsy. I have had one chest CT since August which did not show much if any change and will have the next one mid March.
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Oh Amarantha, I'm careening from despair to joy to furious reading your post. Furious of the time wasted on Ibrance. But joy that you've partnered with a sensible new MO and that your instincts were proven true. Now you're armed with more complete information to make better decisions. Prayers that the Halaven does the trick. Happy weekend, friend.
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Amarantha, after seeing Jaylea's post I scrolled back and wow, your instincts are so in tune with your body and so glad it is so for what is next.
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Armantha I am also very happy that you have a good new oncologist. Your story reinforces how important it is to follow our own instincts and that they are often correct.
I’ve also had sleep problems. One person in my local support group said Ativan with benedryl works well. I was concerned about mixing them but have tried a half Ativan and one benedryl, which is a half dose of each and it does work for me. My counselor just recommended a new breathing technique that I am going to try.0 -
Amarantha! Oh, wow.....thank goodness you have a new oncologist. And thank goodness you listened to your instincts. I can't believe your previous oncologist didn't investigate that when the skin mets were spreading so rapidly. I'm so glad you asserted yourself and I really, REALLY hope you have wonderful success on Halaven.
PatGMc...thanks for the link to the book. I'm going to check it out because sleep is becoming an issue for me. Actually, more of an issue. I've been a bad sleeper for a lot of years now and lately it's worse. I hadn't considered that it could be the Letrozole but that makes sense.
Jaycee...I've also made a note of Ativan. I've been taking a sleeping tablet every night lately but after a while they tend not to work so well, as is well known.
I don't know whether it was on this thread or not that we were discussing privacy but I googled my screen name and breast cancer.org and some of my posts came up. I wouldn't mind because I know our posts can be followed but I had my own photo on there so I've changed it to something more suitable, as you'll see hahaha!
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Hello Ladies,
Seems I have a lot to catch up. Though I still have a lot to read, I was so happy reading that for so many of you Ibrance is doing the job !
Amarantha, it's so great you changed doctor and are now in good hands.
Pat thanks so much for the wonderful story about your friend. This is really the kind of story which reboost me and give me hope again. The last weeks were somewhat harder due to flu and bronchitis. But as the fever finally dropped, your lines gave me courage.
I'm thinking and praying for you all ! Hoping to see more good news soon.
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Yaelle, I'm so glad you're feeling better. The symptoms from the flu stacked on top of Ibrance fatigue can really get you down. When you add side effects from antibiotics and cough medicines, you feel like you've been yanked down a deep, dark hole. I've found Laughter Yoga/Laughter Therapy to be so helpful in rising above all that. Just google that and you'll find videos to teach you simple techniques. I'm sending you a big hug and will be including you in my prayers tonight.
Love from PatG
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Excellent New York Times article about living with advanced cancer:
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Wonderfully written, thanks Pat. The "tyranny of prescriptive joy" really resonated with me - I get that from more remote family members. At times I too feel like I am starring in a reality program about a woman who gets cancer and is very cheerful about it
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PatgMc---
Thank you, thank you !!! For the article. The author hit the nail on the head. So many of the same feelings I am having.
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Thanks PatgMc for sharing the article...very interesting. Although one day I wish I can have the confidence of living a normal life and not have the fear of living in 90 day intervals. Perhaps that's wishful thinking....but if the success of every scan can give us the joy of doing a happy dance to celebrate life, that could be a blessing in disguise!
I am on my last pill of the first cycle. The side effects have been manageable, however, got the news from MO of my low white blood cell count at 0.8. I am rather surprised as I thought I was doing well at 125 mg with little fatique or any other reactions worth mentioning. I guess I have to wait for the count to go up.
Any recommendations to help boost the count? Or any other concerns I should have beside infection? I do have a mild sore throat and hope that it doesn't get worse.
What are your white blood cell count as you go through the later cycle? I am concerned as my count had dropped significantly from a very healthy level at the start. How would I be able to carry on going forward? Would the body adjust? At what point do you think I should reduce the dosage?
Thanks for the info sharing...much appreciate your wisdom and experience!
Thereishope4us
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thereishope, I'm a big proponent of going with 100mg as soon as you can. As I've said here before, my oncologist starts everyone on 100mg and they've all done well. This is easy for me to shout from the rooftops because I've had such a remarkable response to 100mg. Now I'm on 75mg because the doc and I agree that my quality of life hasn't been what I'm willing to tolerate. Bless his heart, he's an art collector who has bought my work and he knows how passionate I am about making it. I told him that I've had long stretches this past year on Ibrance where my creativity came to a stop. Now here I sit in the middle of paints and paper and canvas and brushes, working on a painting/collage! All that to say, tell your oncologist you're willing to go ahead and switch to 100mg and see what happens. Mine says he'd rather have someone who could consistently take the medicine rather than have long breaks for counts to come up. Take that advice for what it's worth, my friend!
Re: the article....I've chosen to have scans every 6 months and not every 3 months! If I do well on the 75mg I might stretch it out even further. Because we've been stunned by bad news from scans in the past, it's hard not to have at least a little scanxiety so anything we can do to avoid spending much time in that black hole can only be a good thing, right? But I agree that the celebration dance is nice!
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That article is amazing PatgMc.... not ashamed to say it made me tear up... the lady at the party.. I guess you're not going to die! Sometimes I feel guilty for the days I'm doing well and feeling good... Well meaning friends or friends of my children send me articles and cookbooks for cancer and pamphlets on places and meds to get in Mexico... I could relate to the article....it's so true.. at times it feels like limbo land.
I also agree with the 100 mg of Ibrance, my onc started me there and i was doing well but TM's were creeping up so went to 125 mg and ugh... mouth sores, fatigue and sadness... scan on Wed and haven't had one since May... we shall see what we shall see, but if all is stable, I'm going to ask to go back to 100 mg. If not.. I'm going to follow your lead Aramantha and see if this cancer is still estrogen sensitive because it's never been biopsied since it came back in May.
So happy I found this group!
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Wow, Pat, thank you so much for sharing this article. It's so accurate
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Great article Pat. So far I have told very few friends about my diagnosis in part to avoid the things identified by the author. I'm curious has anyone shared this article with friends or family and if yes, was it helpful?
You can add me to the fans of the 100 mg dose of Ibrance. I had to go down to that after my first cycle because the blood counts. I'd actually prefer to go to 75mg but my doctor prefers to keep me at 100 mg with an 18 day on and 10 day off cycle. Hopefully with more testing we will know if the 75 mg can be effective.
Pat I am interested in your decision on six months scans. One of the men in my on-site support crew is now having to have kidney dialysis because contrast fluid, among other health issues, has impacted his kidneys. My second scan is due late February/ early March and I decided to delay it until late March because I want to do it after we go to Hawaii for vacation. It got me thinking about whether it would be reasonable to scan every four months instead of every three on an ongoing basis unless my blood test would show the reason for doing it .0 -
Like an echo, I concur with the 100mgm dose, thereishope. I'm now on my twelfth cycle and, after ten cycles of very low neutrophil counts, the eleventh has bumped me up into the right place, meaning I now only need one week's break from Ibrance after the three weeks instead of the two weeks I needed when I was on 125mgm. And, even better, my neutrophil count was HIGHER after the eleventh cycle and a one week break than it ever was when I was having two weeks' break.
Thanks for the article, PatGMc. I'd love to shout that out from the rooftops, or at least some paragraphs. I wish everyone knew that all we want to hear is, "you've had a tough time and I care". We don't want lay people's advice or to hear how someone they know didn't make it because, in fact, they want us to promise that we will get well. We don't want praise for being brave. Yes, perhaps we are brave but only because we have to be ~ the alternative is a life of complaining. And I, personally, do get tired of having to explain to people that it isn't curable, that no matter how hard I "fight" it's not going to disappear. I guess it is a good idea not to tell people but I had no alternative. I disappeared from my network of friends and was gone for so long they were asking.
Good luck Frenchhorn xx
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Whenever people start talking about friends' reactions to their BC diagnosis it takes me back 24 years to the beginning of all this for me. My dear old 80+ year old friend, Miss Ruth and I often saw each other in the restroom at church, both of us having weak bladders and all. She saw me after surgery and said something very close to this:
"Pat, you are such a brave victim, stricken at such a young age....such a courageous AMPUTEE!"
It was so inappropriate but I've had a million laughs over it through the years. When I did the Laughter Workshops for survivors I made up little kits with Velcro dots they applied to their foreheads and the backs of their hands. I inducted them into the Stricken Victims of America in a little ceremony! The secret "handshake" was to slap the back of their hands onto their foreheads and groan just like a stricken victim would do. I still run into people who do that when they see me!
So tonight I'm inducting all of you. Hello, new Stricken Victims of the World!!
Love from PatG, S.V.W.
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Hand and forehead outstretched....awaiting Velcro application......:)
-New Member, S.V.W.
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That article really resonated with me, too. I have one friend whose calls I avoid because the first ten minutes are all about other people she knows with cancer who are dying or have recently died. Then she spends 10 minutes going over all the things I should be doing, like eating kale and meditating. Then it's 5 minutes of "But how are you really?" because clearly, I must be lying when I say I'm feeling fine. It's exhausting, but she's 20 years older than I am, and I feel disrespectful if I try to cut her off. I know she means well...
My sister-in-law, on the other hand, has finally stopped asking me about what day I'm on, on the Ibrance, and if I'm having side effects. I know she was trying to show that she cares, by keeping track, but I asked my husband to talk to her about it, because it was, frankly, driving me insane. We talk every week, and I don't want to spend every single phone call talking about my diagnosis. I'm more than just a cancer patient!
My oncologist also starts everyone on the 100mg, that way she can adjust up or down as needed; and she does scans every six months. Works for me!
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Livi, I've had scans every 4 months from the start with extensive liver mets. The one extra month makes a huge difference especially since my scanxiety starts about a month before the scan!
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How long did you think it would take me to start complaining about my new MO? Not long, right? Well, she does scans every three months. Not such a big deal but I'm having one tomorrow, (Wed, like Frenchhorn) and it seem so soon after my last one. Halloween, remember? I did also complain about my old MO doing them at such varying intervals. 4 months, 6 months, 5 months...that was a little nerve wracking. Once I asked him why we weren't doing one after four months he said because I didn't have any symptoms. Then I never call to get results. My next MO appointment is not for three weeks. I've never gone more than two because that's just how the appointments fell. I can wait two weeks. Not sure about three. How do you guys get results? Maybe my new MO will handle it differently but my old one did nothing until I saw him again. Calling seems like bad luck to me. (But I wear the same clothes to each scan so...) Then when I got ready for bed last night, my lymphedema arm was all pink. Not sore, not itchy, just blotchy pink. It was a little lighter pink this AM. I washed both my sleeves and didn't wear one today. Give my skin a break. That's all. No more complaining from me. Until next time.
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My MO follows the Paloma trial protocol closely, scans every three months, blood work every two weeks until I have had 4 consecutive reading of neutrophils at 1.0 or greater. She calls me as soon as she gets the scan results. I saw her yesterday and after 7 months on Ibrance I finally had 4 reading of 1.0 or greater, so I can go to draws every 28 days. I have bone scan on Thursday and a CT scan next week. My orthopaedic surgeon reads the bone scans too and call me if he is concerned.
I pray that this months scans are good. The last one showed no activity in bone and a shrinking liver met.
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