Ibrance (Palbociclib)
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I had my monthly checkup today. The MO wants me to delay starting my ibrance cycle for a couple of weeks because I need a root canal. She didn't get any arguments out of me. I'm in celebration mode, two more weeks off. I never thought I would be looking forward to a root canal.
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Ah, Simone, the things that we look forward to now! Sad but true!
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Simone, two weeks off Ibrance and stoned out of your gourd for surgery.....Life is good!
May you heal quickly and have big energy!
Love from PatGMc
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Radagast - Im one of those people that laughs hysterically at anything gas related and loved your post!
Be careful of those computer kittens - we had two small kittens at one time who loved to sit on partners arms when he was on the computer and look at the internet as well. Tons of photos of those days. Well,then they grew up and they still love to do it and now he can barely use the computer due to too much cat butt in the way. They do tend to get set in their ways. Have you tried Kitty YouTubes yet?
I start the cocktail in two weeks and am currently acclimating to the fatigue of goserelin and managing some wicked back pain. Im hoping I/L, even with some side effects, will help me start to get on top of everything and feel better (or at least moderately back to 'the new normal'). Radagast - any early signs or hope you can toss my way?
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Jaycee, my Lovely MO has also moved away (no chance to follow as she’s gone to Malaysia!) and we don’t have an option here to choose unless you go private - which I could do, as I have insurance, but currently being treated under NHS.
My new person is the boss and doesn’t mess about it seems. My thinking now is the nurse team are my everyday sounding board and the MO is the clinical expert. Unless I have a specific issue with a person, I’ve accepted now that the team will change over time, and more time is good right?
I also keep my pills in an organiser.... made me laugh as I also use it to check I’ve actually taken them... I look for the empty day! Palbo brain fade
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Pat - LOL. Oh I'm ditching the pills, but it's only because I'm doing the "twist" like you after the ditch. Don't tempt me to give colorful phrases for that :P I feel like at this stage of the game no such thing as tmi. Just call me the good ship lolli-POP
Bev - Today is exciting, only an Aromasin to chug today, I'm going to really enjoy this week off! Tiny mouth sores are just about gone, woo hoo!
Sondra - LOL, yes that was becoming a problem, so i gently tried to tell Violet that i can't do anything with her right there. I put on an aquarium live cam with fishes swimming to distract on the TV nearby, nope, my computer typing is more interesting. BUT she has changed locations, I like to lay across my bed on my stomach when I use the laptop, so she has decided she is going to be my parrot now. Curls up on my back and rests her little chin on my shoulder. Now...if I could just get her to not want to follow me into the shower.....or race into the bathroom to watch daddy make golden arches...well...she might start resembling a "normal" cat.
Candy - Violet is a handful, I grew up with 5 cats, and even tho I had one that liked to serenade at night and make geometric designs with string he made perfectly straight, I've never had one like her. I'm a cat person too!
Have a great morning/afternoon/evening ladies
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Sondra - I've found Ibrance to be pretty tolerable tho I'm only 1 cycle in now, I am taking it with Aromasin. I had tried taking combo mid day and I think that affected my already sketchy sleeping at night. I switched to mornings for both pills and last night was better sleeping wise. I haven't really noticed any side effects other than the gas and the teeny tongue sores. First week had neither, 2nd week had both into 3rd week, now going into my week off, gas is gone and teeny tongue sores are just about gone. Overall this feels SO much better than what I've gone through previously with that powerful chemo regimen I had in the beginning. If I have a big day and do alot of things, it does exhaust me, BUT I can do them. Honestly, thus far I feel great on Ibrance so far. Taking the AI with it has been okay too. I started the AI about 2 weeks before I was allowed to add in the Ibrance as I was healing from oopherectomy surgery. So far so good with both!
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Radagas I think insomnia is a side effect. I’ve tried taking ibrance at night and early. It seems early is better for me. I do have insomnia and hot flashes at night so I try to do everything to get comfy heating pad for back fan for flashes MM for a few laughs and relief from pain then ambien or melatonin whichever way I think will work. I rarely nap during the day but will sleep late at times.
One week into Cycle 31.
Tanya
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Cross post:
Update: Well my MO called me this afternoon. She said PET showed no uptake in liver or bones. To continue Ibrance/Letrozole. Appointment already with her Nov 25 and she said she would see me then. Processing and seeing what questions I have for her for the 25th.
So the symptoms I have---fatigue, pain in spine, etc is side effects of meds. ?? Not the cancer worsening. ??
Thankful that the Ibrance/Letrozole is keeping things stable. But, boy howdy, I feel so crappy so much of the time. Right now as I am posting, I feel slightly nauseous. Fatigue so much. The blasted hot flashes.
Thankful but confused, frustrated, etc that cancer is stable and I feel cruddy.
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Candy, I often feel pretty crap... too tired... too sore...too many trips to the loo...too pissed off to do anything. But I've found just getting outside for a walk in the park, beach, hills makes a MASSIVE difference. Might only be 1 mile (or just 10 mins round the block with the dog) on a really crap day, might be 8 miles on a fab day (which I do pay for the next day, must be said). I always also take just a few minutes in the best spot to stop and just breathe. Simple things DO help.
Hardest bit is getting over the door, and wrapping up warm in Scotland!
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Candy-Glad to hear you are stable. I do think all those symptoms you named can be the se's of our medication. What seems to be helping me with the fatigue is greater Vitamin D supplementation. Have you had your Vitamin D level checked? I had to ask my MO to test for it-it was about 30 which is a little low. Now that it is higher I feel like I have a lot more energy. The other things that works for me (although it is very counter-intuitive) is getting more exercise. I am very fortunate to be able to exercise in a pool and play this new sport pickleball-both activities are basically free. I also do yoga daily which really helps with back and joint pain. It's funny b/c I find walking quite tiring now. I do it to stay in shape but don't enjoy it like I used to.
I didn't think I'd be able to play pickleball but I gave it a try. It's very invigorating for me and a mood elevator. I wonder if there are any types of fun, free (or low-cost) exercise classes you can find in your area?
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Yip agree with Chicagoan, Yoga is great, I am going to a class tomorrow ...even if you can’t actually hold the positions, which I can’t... just have a go...swim if your bloods are ok and no snotty kids in the pool. I love a sauna, 10 mins of proper heat are great for the joints (for those of us who live in the frozen North). Basically MOVE if you can and get sunlight/ heat and fresh air if you can. This from a PE teacher of 32 years
Would never go near a steam room though... way too many bugs!
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Well if you are going to start sobbing, or laugh uncontrollably, Grand Central Station is your go to place. No one pays any attention. That where I've been catching up on all of your posts as I wait for my train in the evenings.
News of progressions (Nicole, Pat and I think I'm forgetting someone else?) what a stab to the heart! But then I read on about how you are coping, next options, saw the support, bravery and humor. What an extraordinary community we have here!
Anyway just popping in and saying hello for now. I'll give you my own crazy update in a day or two.Love you all!
Penny
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P.S. Candy thrilled to see your good news —but so sorry you are feeling so miserable
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Candy,
So glad to hear your good news!
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Candy, that's very good news! Very happy for you!
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So happy for you Candy! And at the same time I'm also really sorry that you don't have a more concrete explanation for your symptoms. I echo what Karen and Chicagoan have said - I'm amazed every single time that a little exercise can have such a big effect. If you're already active, maybe try to switch it up? Sometimes our body gets too comfortable and we have to surprise it. Sending you so many positive thoughts!
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Thank you ladies for the support and advise. I am not an exercise person, never have been. I do walk on a treadmill in my house. I have rheumatoid arthritis so I have chronic pain. And I have severe degeneration in lumbar spine from years of lifting (my job duties). So I cannot do a lot of activities.
I think the symptoms I have is the side effects of the meds. Just the other day I was doing housework and the fatigue hit- BAM. Overwhelming fatigue. Had to stop what I was doing and lie down for 30 minutes or so. Felt like every cell in my body was fatigued. Like if I didn't stop and rest I was going to collapse. And the hot flashes are every hour some days. Pouring sweat while house cool. Recent spine pain--- who knows. Feels like someone wacked me across the back. Heating pad helps.
Chicagoan- My Vit D level has been low in the past---20, I think. The PCP wanted to prescribe Vit D, but I have a history of kidney stones so the doc was concerned if I took Vit D/ Calcium it would cause more stones. Sure don't want that !!! Those stones are painful !!!!!!
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So, folks, it looks like I am not leaving you all just yet. Very long story (too long for here) but I met today with my MO (versus the NP who I met with last week who basically said I had progression and should switch drugs) and the MO said to stay on Ibrance and Faslodex for the time being. I had a very equivocal CT scan on Oct. 30th, and when I discussed it in detail with the MO today, she agreed that it was kinda screwy the way that it was written and she's not sure if I have bone mets or I don't. She is going to press the radiologist about it to get a more definitive read. Additionally, my TMs (CA27-29) are coming down some -- I'm still at 200, so obviously not a normal reading, but that's better. I seem to be dropping by maybe about 50 points a month or so right now. So we are going to stay the course at least for now -- not switching to piqray nor to immunotherapy for at least the next month or two. We'll just see what happens with this current combo.
Guess I'll keep on dancin' a little bit longer.
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hi candy - you can get vitamin d without calcium very easily.
If I were you, I would def start taking 2000ius/day of vitamin d. I actually take 5000ius 5 days a week.
The vitamin d can really help boost your immune system, so it has an added benefit!
I’m sorry you’re in so much pain and so tired. I know you live in a not so populated area. There are PTs who specialize in oncology PT. Perhaps you could ask you MO for an Rx for PT so that way it would be covered by insurance and you can work with a professional who will know what types of exercises would be best for you and your medical conditions? Just a thought! Remember, you do the best you can! No one can push you too far except yourself. It helps to have an open mind but also know your limitations.
I am wondering how people are doing with the memory aspect of these medications? I swear my memory is worse than ever! Today I couldn’t even remember that I meant to add some green veggies to my late lunch meal I made. I kept Thinking I was missing something but couldn’t remember what it was 😭😭🤪🤪🥴🥴🥴
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Does everyone know about the webinair tomorrow night sponsored by Living Beyond Breast Cancer? It's at 6 p.m. EST -- if you go to their website you can still sign up. It's about metastatic cancer treatment choices and side effects, and there is some kind of a participatory Q & A session.
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So glad to hear your good news BevJen! Thanks for the info on the webinar. Not sure if I can make the entire webinar but I signed up anyway.
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Candy, yay for good news. Vita D is essential and I agree to find it without Calcium.
LoveFrom...yes, my memory has taken a hit. I try real hard to keep it active like doing crossword puzzles and learning new crochet stitches, etc. But sometimes I can't remember how many stitches I just did. I take out a lot of work and continually reread posts because I can't remember what I wanted to say.
BevJen, I agree that the treatment plans are the most confusing things of all. I have a scan on Friday and I am a bit nervous. It is a new place, and today my onc emailed me today that my levels are too low to start a new cycle and she wants me to repeat labs because this is the first time in 3 1/2 years and she is concerned. We both hope it is just because I got labs done too soon and only waited one day after the end of the cycle. I also hope it is because I was so sick this past month. Do I sound grouchy? Yes, I didn't sleep at all last night. I went back to bed at 9:00 this morning for a couple of hours but felt like cr** all day. Some days are like that. So glad to be part of a community that gets it.
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Into the light good luck on your scan Friday. Hopefully your blood is just tired like the rest of the organs muscles bones. Are you at 100?
Love philly my memory takes a walk at times. MAinly short term memory I think.
Nice to hear you’re still dancing with us BevJen.
Tany
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I had my bloodwork today..day 3 Ibrance. Think I went too soon, usually go around day 10, as my ANC was .8.
My MO was not concerned as she said I am on still on the upswing of week off recovery.
But we are watching the CA15.3 trend as they reflect my cancer. If they continue to rise, I will have brain and liver MRI. But if they are stable, we will continue onward with I/L.
I hate this wait and see, wait and see, and wait and see cycle. Over and over. It seems like everyday I wait for news that treatment no longer works. How do you put one foot in front of the other? How?
My MO is such a good cheerleader. I expressed that I was greatful to be alive, but know my future. She said she wanted to keep me in treatment until the cure. Not sure who the delusional one was at the appt.. ha.
So I went to the mall and walked around to just get out. Then the holiday music started to play and to be honest, I wanted to sit on the floor at Belk and cry. Instead, I left, went to my car and cried.
For those who post uplifting posts, especially when facing their own major health crisis, thank you. You keep me going. You can do it, so can I.
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Jensgotthis, I wonder if your onc has said anything about Piqray or ESR1 testing? Also, what supplements do you take, if any?
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Sandibeach I am here holding your hand. I am feeling the blues today. I look at my supplements that I take and think, what the heck is the point??? Is this going to keep me alive for an extra couple weeks? A month? It is very hard sometimes to keep going in the face of this diagnosis. Sometimes I just get worn down.
Maybe you do need to collapse and have a good cry? I feel like one has been building up in me for a while. However, my antidepressant, Lexapro, somehow keeps the tears from falling so regularly. Its like i know they are there but there's some sort of "off switch" to allowing them to flow. Not that I am complaining. I was so depressed before I went on Lexapro that it is a relief to NOT be crying all the time. However, I LOVE a good, cleansing, wring out the mind/body cry.
I am in the same boat as your right now with following the TM numbers. It is not a fun place to be. What a roller coaster
I find that distractions are key and being with others to get me out of my own head helps incredibly. That being said, I feel like what I share on these boards are much more personal than what I can share emotionally with my loved ones. I don't want to worry them or stress them out. They are already worried enough about me and their own issues. Sending you (and anyone who would like one) a big bear hug.
XOXO
Philly
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Thankyou Lovefromphiily.
Your kind words made me cry. You are right that for some of us, BCO is our support system.
My DH has already said he wants to be in denial on purpose. He does not want to mourn me while I still live. He was honest, so I let him be. I do the research and go alone to my appts.
So many of my Ibrance friends have moved on to other treatments, so I occasionally look on those threads to keep in touch. Those early contacts are still very important to me.
S
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Tanya, I am one of the few who has stayed on 125mg the whole time. We have never even discussed a reduction although that discussion may come up next week at my appt. I think I was one of my onc's first Ibrance users.
Sandi and Philly, seems like a good day for across-the-net support. My DH has now retired and drives me to all my appts and goes in with the Drs. He even sits in the car during my scans, but I don't share all my emotions. It would be hard on him. I go on a walk to be alone. Chris
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I love you ladies here. As I sit and read your posts. We are our support system. Sometimes I think I am going crazy. Positive that I had progression after Oct CT. Psyching myself up to moving on from Ibrance to who knows what with who knows what side effects. Then PET shows all stable and keeping on with Ibrance. Now mentally on the upswing. I have more time. Looking at taking on a new project at church. Wait. Things can change at a moments notice and I could get sicker. Up, down, up, down. Some days I think I am going nuts.
BevJen- Continue dancing the Ibrance Dance.
Philly- Oncology PT--will have to look that one up. See where in my neck of the woods that would be offered. Several miles away, I am afraid.
Sandi- You can do it. You can do it. Hugging you right now.
Philly- Hugging you right now, too. Sorry you are having the blues.
XOXOXO to all on here. My life line in this cancer journey/nightmare/ whatever you want to call this ride.
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