Ibrance (Palbociclib)
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Threetree I am glad you read her notes. Sometimes Dr's communicate better in notes than verbally. I am fortunate this time. Every time I mention who I have, I am told that I am so fortunate. I still advocate for myself and ask questions. He is probably the nicest and the smartest oncologist in the clinic. That is according to the staff and other oncologist. I almost changed hospitals this time around when they wanted to send me back to the last oncologist is saw. After talking to me and a little research, they discovered that he had changed did an addendum to his last note saying I never followed up with ongoing care but Had written the day before, I was discharged. Keep advocating for yourself.
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aprilgirl1 Yes our husband sound like they are both in denial.
Last week when I saw my oncologist, I asked for a referral to palliative care. My oncologist was 100% in agreement with this idea. I will see them next Tuesday. Hopefully they can help with some of my side effects and other issues I need to address. I was to have a knee replacement surgery but it was cancelled and maybe they can help me figure what/if I can eventually do it. I am also hoping to get a referral to therapy. I am having a tough time dealing with my husband. I don't expect him to ever change but maybe they can help me deal with the stress of his denial. My daughter is going with me on the first visit. I made her my medical power of attorney because my husband says things from time to time and even to my daughter that concerned me that he could make good decisions for end of life when that time comes or might try to interfere with my decisions.
My goal is to get help with the non cancer issues so he is free to direct his energies to cancer and my focus with him will be on treatment not everything else.
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@threetree its so disappointing when you get medical doctors with that attitude. For all their 'fancy' medical degree, and think they know so much, then why are they just following the herd with whatever they are prescribing? Sure there is a standard of care schema but like with the drugs and cancer itself, its not one size fits all. If they aren't going to engage their brain and curiosity then what is the difference between them and an AI program? Or a Google search? (note: we get a LOT of this attitude in the UK, the trick is to get under someone who has a research interest or reports to someone who has a research lab or whatever). Are you at an NCI center or able to pursue a second opinion at one?
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Hi SondraF - I agree with you wholeheartedly. I've been telling a friend how this current medical system seems so much like nothing but a computerized "algorithmic" thing these days. They use a cookbook and they all cook up exactly the same recipe. It really bothers me. I used to think of medicine as a combination of science and art, and they have dropped the "art" all together, and now even the science part of it is getting narrower and narrower all the time, but like you said "one size does not fit all".
I am at an NCI center and am actually wondering about leaving it for one of another couple of "regular" local hospitals that do a lot of cancer work. I think some of the places that get the NCI designation get it for their research and teaching activities and not necessarily for direct patient care. I'm wondering if a place that doesn't do all the teaching and research, but focuses primarily on patient care might not be better.
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Three-reel it is interesting how each hospital. In 2015 I started at a local hospital. I felt my oncologist only seemed to cared about the money. I went for a second opinion at a research/teaching hospital about a 2 hour drive away. All they treat is cancer. My insurance didn't cover them and I payed for the visit out of pocket. The time and information was the best money spent. They sent me back to my local hospital but they gave me courage to switch to a different oncologist.
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Brutersmom - Thanks for this. I do think I should look into a 2nd opinion. Just can't decide where as of yet. So you say it gave you courage? Well that's good and I think I could use a dose of that too.
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Threetree. The second opinion was so different then my Dr. The Dr. reviewed all the test results and retested the tumor. He explained everything in detail. He told me how chemo would and wouldn't benifit me verses the damage it could do. He spent about 2 hours explaining things, answering questions, and helping me make decisions. Back then I was stage on no node involvement but grade 3. Personally when my cancer progresses I will most likely get a second opinion before moving on.
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Oh, that experience you had with your new doctor sounds so nice. I want to have an experience like that too. I just heard from the center I go to and they don't allow 2nd opinions within their system. They say they use a "team approach" which means most all of the dr's would treat someone the same, so I will need to look outside my current facility. I figured that would probably be best anyway.
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I would go to a different facility. I wouldn't feel confident with a Dr from the same clinic. I would feel like they would have to agree with that Dr no matter what.
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That's kind of been my feeling too. There are places around the country that due remote/virtual second opinions and I'm going to look into that too. I tried with Mayo last spring, but they had stopped doing the virtual visits and will only address anything if you go there in person. Way too far away for me! I think I saw where MSK will do virtual second opinions, maybe I'll look there.
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Threetree What city and state do you live in?
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I'm in Seattle.
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Threetree. That area should have some other choices for you. Hopefully you can find someone good to choose from.
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Yes, we do have many options here and while this onc will be out on maternity leave I'm going to explore both the virtual 2nd opinion options and the possibility of switching to another local hospital. I just have a fear that with all of this "standard of care" business they're all going to be pretty much the same, although sometimes just another person explaining the same thing to you in a better way can help.
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Hi Ibrance dancers - I'm popping in with good news , my pet/Ct scans were all clear . I'd say it's my quarterly scan but it's been 5 months since my last scan . I wanted this one later as we are taking a big trip to Europe on 9/1 and I want to make sure everything looked good before we go away for 3 weeks . Celebrating with my husband by flying to Spokane (from Seattle ) to see my favorite band, Foo Fighters . They skipped Seattle and Portland on this tour.
This is my 3 year anniversary of clear scans - I know this can change at any time but I am relieved.Threetree - I support you switching MO's. There are many options . I don't go to the most convenient cancer ctr to me but go to what I believe is the best . I know it's a pain to switch but it's worth it to be "heard " and feel confident with your treatment .
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Aprilgirl1 - I messaged Fred Hutch about getting 2nd opinions and/or switching to new drs within the system and they say you can't get a 2nd opinion from another dr there, because they have "team approach" that pretty much has everybody getting the same treatment no matter the dr they see. Additionally, they said that a switch has to be formally requested and they review it before it's allowed or not. That pretty much does it for the idea of me checking with your dr for a 2nd opinion or switching altogether. I'm thinking about investigating some of the remote/virtual 2nd opinions that might be possible from other big centers. Also thinking about maybe checking at Swedish for a possible 2nd opinion.
Wow, a big trip to Europe in September. Sounds wonderful!
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threetree, I'm sorry you weren't able to get the answers you wanted.
Has anyone here stopped Ibrance for more than a couple of weeks? Any issues? I took a 16-day break from July 10 (severe vomiting and dehydration on the 9th) until the 26th. Took one pill on the 26th and ended up back in Urgent Care with vomiting and dehydration. Haven't taken it since then. My routine scans are at the end of August.
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@sunshine99 I haven't had to break from Ibrance except when dealing with UTI for about 7 days. I didn't notice any additional problems. It seems like Ibrance is really giving you a lot of trouble. Are you thinking it's time to change tx? Does zofran help you at all? I'm so sorry and hope that you can get back to treatment and the scans are stable.
Wonder if Ibrance is still working as they found a 2 c.m. tumor in occipital bone with inner table involvement (whatever that means?), no extracalvarial extension or epidural extension identified. Now I do not recall scanning above chin since being diagnosed. Edited: Did do a ct scan and nothing showed until this MRI last week. SO was this tumor there all along and did or did not shrink on Ibrance? Wonder why that is? Are they waiting on symptoms first? Isn't that like letting the horse out of the barn and then closing the door? I have pet scan next week to identify areas to radiate. I hope this is numero uno on the list as this one scares the daylights out of me. Can anyone comment on this new finding?
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Irishlove
I think I remember you posting about the head lesion earlier and you said "occipital bone", is that right? If it is, then I can tell you that the "inner table" is simply the inner surface of the bone, the side closer to the brain. Please remember that I have no medical training, but did a lot of reading when I had a lesion in the clivus bone of my skull radiated last year.
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Sunshine99
My experience with Kisqali isn't exactly on point, but might be helpful.
I was Dxd Stage IV in mid May of 2022, with 2 mets - one in the clivus and one in the right pelvis. MO wanted to start Kisqali and Faslodex immediately, but the clivus met scared the heck out of me and after some reading, I was pushing for radiation. Took two weeks to get an appointment at the tumor board, where every radiologist voted for SBRT. Took several more weeks for planning sessions and then 5 rounds of radiation. Took another month of recovery and steroids before I was allowed to take Kisqali. From DX in May to the first week of August, I was on Faslodex alone. At the first post radiation scans on 10/02, several small sclerotic bone mets appeared. No way of knowing if it's Kisqali or Faslodex that has controlled them. Scans have been stable since then and I'm now on a 6 month scan schedule.
I saw my RO a few days ago to set up palliative radiation for a few of the sclerotic bone mets on the posterior surface of my ribs which seem to be irritating nerves and causing back pain. I asked if he thought delaying Kisqali to have radiation allowed these mets to spread and he said absolutely not. He believes they existed at the time o MBC DX in May, but were just too small to see.
Sorry for the long post, but the point is that if you're still on the estrogen inhibitor, maybe that's enough for a short time.
Fingers crossed for good scan results.
Hugs
Eleanora
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Sunshine-I had to take a six or seven week break from Ibrance when I was recuperating from surgery to repair a broken leg. Then I took a few weeks off when I had Covid. I was nervous to be off for such a long time for the leg but remained on Letrozole and had no problem on my next scan.
Aprilgirl-Congrats on your good scans. Hope that you and hubby enjoy that trip!
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Irishlove
All of our brains are unfocused at times. With everything you're going through, you seem very lucid to me. ☺️
From how you describe it, this seems to be a skull met which an RO should be able to radiate. Don't know if MS causes this type of lesion.
If they recommend radiation, you want steroids and anti-nausea meds upfront. I only needed Zofran during the days of radiation, but had steroids for a full month with a taper at the end. Skull radiation causes inflammation and swelling. I could feel pressure in my skull, had vertigo and a two week span of double vision, but no pain. I did have the mask that bolts to the table, but it was tolerable. I found that counting "one, one thousand, two..." really helpful as it gave me a sense of control over time. I never got to 300 (so less than 5 minutes) before they were unscrewing the bolts.
You can do it.
Hugs
Eleanora
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Thank you for the input on the break from Ibrance. I know something is going on with the cough, but still think it's related to the swallowing issues. Am looking forward to my next labs/scans to see if anything has changed.
Are the alternatives to Ibrance any easier to swallow? Is the pill the same size? I don't even know what the alternatives to Ibrance are. I really never had issues with swallowing until around May of this year. At least that's how I remember it. The two crises happened on July 9 and July 26. I NEVER want to go through that again.
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Sunshine
Ibrance, Kisqali and Verzenio are all CDK4/6 inhibitors. I take Kisqali, which comes in 11.1 mm round tablets. Don't know what dosage you are on, but found one Ibrance measurement given as 16.2x8.6 mm.
I have discovered a gimmick that helps me to swallow this and other meds with no problem. I use a disposable plastic water bottle. Think about your body mechanics - when you take liquid from a glass, you don't tilt your head back for fear of spilling it and it can be difficult to get a good gulp. With your mouth surrounding the opening of the water bottle you can tilt back, get a good gulp and the pills go down much easier.
I was thinking some more about your spasms and wondering if you could be allergic to one of the excipients in Ibrance. It might be worth asking your Dr.
Take care
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@eleanora Ah, thank you so much for sharing and supporting all of us. I guess I didn't think they'd have to do a mask if it's the back of the skull, but then again I shake like a James Bond martini. Do they allow major antianxiety meds??? I'm seriously worried about a massive heart attack. Even an oxygen mask throws me into a panic attack and I've never had anxiety before. I know I gotta get thru this.
Applesauce and pineapple juice are my go to with swallowing difficulties from MS.
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Irishlove
Posted a long reply to you on Mel's living room.
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Stupid site cut off most of my message again.
I think most meds would be acceptable
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Thank you for the ideas re swallowing the Ibrance. I will talk to my MO at my next appointment in early September. Will also probably schedule another "stretching session" with the GI doc.
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actually I was reading that tilting your head back closes the throat and so to take pills we should slightly tilt the head forward, opening up the throat- its counterintuitive to swallow that way tho…
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