Ibrance (Palbociclib)
Comments
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Cure-ious
The info about "closing the throat" is interesting, but I agree that swallowing with your head forward would be very difficult - I think impossible for me.
I only know that my gimmick works for me. Before I found it, I dreaded the time each day when I had to take Kisqali. There were several times that a pill would stick somewhere along the way. Now they go down without a problem ☺️
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This whole swallowing thing is interesting. I'm a retired speech-language pathologist and used to do swallow evals on nursing home patients. I agree that tilting one's head forward to swallow is "safer" but it still seems counter-intuitive.
elanora, what changed? I do need to contact my GI doc and get another stretching session scheduled. Yay! (not!) I'll check and see if he wants me to have the motility study first.
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Thanks all for insights, I am reading along and learning about next line after Ibrance+Letrozole
following discussion around teaching hospital Vs. regular clinic, in my county a super deluxe hospital came in about 6 years ago and started hiring the best oncologists/ RO/ surgeons etc. from local clinics and the teaching hospital where I get treated. there are still few good doctors in the teaching hospital but work in limited time and their waiting list is too long, those MOs who still working in the teaching hospital are too old and desperate to run a clinical trial. My first MO tried to convince me for a phase one trial when I was just diagnosed as do novo, and a year later put me on a trial without my knowledge, change xgeva to something else… long story. I had to switch to the current MO, she is the head of oncology dept, and would be awkward to choose an oncologist-who most probably works in her lab- over her. she suggested a clinical trial as she believes there are other medications better than Ibrance- her opinion! I searched and found the drugs are not new but the combo is under study which are exemestane and everolimus (afinitor). I am not comfortable with afinitor not just now, so my only option is to look for a second opinion.
Sondra, I hope xloda works better for you, are you taking any hormonal therapy as well?
Sushine, don't worry about taking off of Ibrance and focus to get better physically.
Katyblu, thanks for your service, I am sorry about bone progression, I hope next line of treatment works the magic.
April, thanks for your energy and sharing hope here, enjoy your trip and your fav band, I remember you listen to foofighters in scanner machine :)))
take care all
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Sunshine99
I think what changed for me was the volume of water that I got from the bottle with my head tilted back. I also make sure the water is cold so that it numbs my throat a little when it goes down.
Hope the specialists are able to find the cause of your swallowing issues soon.
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@snow-drop - you are sweet to remember my fav pet-scan music! I looked back to your last post in July and it you had some progression. Has your oncologist ordered a new biopsy ? Can you ask about a biopsy ? I would want to know why Ibrance and Letrozole stopped working. I have read a lot of posts on here about Xeloda and it seems like it works well for many people. Is that an option? Let us know what you find out.
@Sunshine99 - I sure hope you can get the swallowing issue resolved soon. My son has autism and we worked with some amazing SLP's. Like snow-drop said, don't worry about the Ibrance right now, just work on getting better.
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Regarding pill swallowing - mom was just talking about how you should use a straw because it creates some sort of vacuum… i dunno. I swallow ok but if anyone wants to maybe try that (or perhaps look it up further!).
@snow-drop Xeloda itself is fine its just everything going on around it! :) No hormone therapy at the moment although I am still HR+. I have scans on Monday to see what is going on and if they need/want to radiate my pelvic met.
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Sondraf
In your pocket for Monday's scans. Hope they find a way to alleviate that hip pain.
I had my planning session yesterday for palliative radiation to rib mets that have been causing pain. The actual sessions won't occur until the end of the month, as the RO wants to do them during my off week of Kisqali. Really hoping for relief.
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@sondraf hope your scans are positive.
Yesterday I had my appointment with my palative care doctor. I feel likebl a ton of weight has been lifted from my shoulders, I have finally understood and moving in a direction that will help relieve some of the tension of the last 7 months. The Dr. feels my sleep issue is anxiety or depression or a combination of both. She will be addressing that afer a full reveiw of medications for safety and meeting with the oncologist. Unfortunately my knee situation remains supportive care. I go for my first scan when I get back from vacation and hopefully to start counseling to learn how to deal with my husband's denial. My daughter shared thing at the meeting that she never shared with me personally. She definitely iunderstands everything going on, but admits she has a tough time initiating conversations and I on the other hand don't want to dump on her. My conclusion is if things are not going well seek palitive care. Your oncologist and PCP cannot do everything.
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hi:
It’s been a while. Hope you are all well.
My quandary @ present is that I need BKR surgery & wondering after 70+ cycles I/F should I do this surgery/recovery as I worry about my next scan in October—scan-dirty—>could be the one that changes course of Mets/Tx…
having Brain scann1st; August Bone & Ch/abdomen ct scans were negative!I think I’m going for it though! I’ll let you know. Please share any experiences: w”Bilateral same day outpatient Nano-knee surgery”
Hope your all enjoying wonderful summer days!
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I finally got to speak to my MO on Monday. He was a little tired after just returning from vacation the night before, so maybe not the sharpest tack. But he's great so far. Anywho, I asked for a biopsy or something to check for mutations and the hormone status. Because I am starting palliative radiation next week for my left hip, he was concerned we couldn't do a biopsy and began contemplating the blood biopsy. We talked about the likelihood of that producing results before he remembered I have 3 other spots, with 2 being large enough to biopsy. So long story short, interventional radiation is going to do a biopsy the week after radiation. Plus we are going to scan in a bout 4 weeks. He wants to keep me on ibrance and arimidex for now. But if there is more progression on the next scans, we will talk new treatment. Hopefully this biopsy and the testing from it will come up with something better than chemo.
Quick question: I have ILC, so would it be better to get an MRI vs PET/CT? I've heard that lobular (which is strange and weird) can be better detected using an MRI. IS that true? Any thoughts?
Brutersmom - Palliative care has been one of the bright spots in this journey. My palliative doc works wonders with helping my pain. And she's been great at getting referrals for other issues like therapy, physical therapy, and palliative yoga. I'm glad you've started down that line.
Speaking of which, apparently I am a medical oddity as my body doesn't respond normally to medication. We've had to tweak my pain meds so many times in 2 years. I am basically on the lowest dose for most things because my body cannot tolerate higher doses. And here's a TMI (sorry!) opioids make it difficult for me to urinate. If I have too much, then I have to bear down or push to urinate. It's like my body forgets how to go. So I stay on the lowest dose in order to keep that in check. But it makes treating my pain difficult. The ER morphine I take holds back most of the spinal pain, but it doesn't touch my joint pain or neuropathy. Gabapentin works on neuropathy. I was taking marinol to deal with the joint pain, but found it caused the big D. I can't take NSAIDs because my kidneys aren't great. So…. it sucks. I take my breakthrough meds and tylenol to try to hit all my other pains. I just feel like I'm on too many pain killers but not getting enough relief!
Okay rant/vent/questions/whatnot over….. Thank you ladies for always listening. I hope y'all have a wonderful evening. I hope your upcoming vacations are terrific, your scans are NED, and your other issues alleviated!
Katy❤️
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@SondraF - in your pocket for Monday scans! Hope they are stable / clear
@Bailey - I don't know anyone who has had knee surgery on Ibrance. Chicagoan had leg surgery on Ibrance and had to be off Ibrance for a couple of weeks but did fine and is still stable/nead. Send her a PM :)
@Katyblu - my cancer is not lobular but I remember KBL on this site knows a lot about hormone positive lobular cancer. I remember that ILC grows in sheets so a newer type of PETscan called FES Pet was best to pick it up. I don't know about MRI's. Send her a PM? I am so sorry about all pain you have been in and how youve tried so many pain meds yet still don't get relief. Hang in there!
@Brutersmom- sounds like you have a great palliative doctor and a really productive meeting with your daughter. I am sorry about the knee.
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Bailey-I did have emergency surgery on a broken leg. I was off of Ibrance 4-6 weeks, can't remember exactly. There was no flare up in my cancer. If your knees are causing you a lot of pain, I would probably go for it as well. It is a QOL issue. How long would you have to be off Ibrance? What does your MO think?
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I have had low pelvic sore and pain since past Tuesday. That happened after my travel trip. Along the pain I have low fever every day in late of day from 99-100.2F. I am not sure the pain is caused by bone Mets or bone injuries? Why there is low fever every day? Is there anyone had similar experience? I have MBC with bone Mets for two years and have taken Ibrance plus AI. The lasting pain and low fever has not happened in past two year. Welcome any comments!
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Bluesea, I'm sorry about your pain and low fever. I haven't had this experience on Ibrance and fulvestrant . But recently my 24 year old son had really sore legs and a low fever . It ended up to be Covid - which I didn't expect . Achy legs was his biggest complaint (he never lost his sense of taste or smell ). He has been vaccinated and overall it was a light case (had never had it prior).
As you've had this for almost a week, send a message or call your oncologist and see if they have any suggestions or will have you come in for a scans . Recently I had persistent right hip pain that would not go away with advil. Oncologist brought me in for an X-ray which was clear and didn't show Mets or arthritis . It ended up to be bursitis and Pt plus a cortisone shot has eliminated the pain.
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aprilgirl I was very interested to read your comments about your son. Several weeks ago I had very achy legs but otherwise felt well. I am fully vaxed and in fact a couple of days after my legs starting aching I had my 6th jab. Before the jab they were discussing possible s/e’s and I was thinking I have all these. I also had persistent right hip pain and a couple of odd memory blank moments so requested an immediate full body and brain mri. Brain was fine but I have 2 areas which showed possibly slight progression of my extensive bone mets but nothing that would cause leg pain which felt like I had cycled up Everest. Onc ordered another mri in October. 7 years in and still on Ibrance and Letrozole and I would like to stay that way. I didn’t do a Covid test.
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@ Chico - Covid did not occur to me but my daughter was visiting from out of state and said that her brother should take a Covid test . He was also very irritable and when he was younger that was a sign that he was sick (haha - how easily a mother forgets !). I was shocked he tested positive .
It's good your onc ordered the brain mri body mri . Hope the possible slight progression is benign or can be radiated and I hope the pain goes away. My hip pain is much better/ almost gone with p/t and the steroid shot. As we are stage IV we need to rule out Mets or progression for sure .0 -
aprilgirl this has been an interesting exchange for me. I have a lot of pain as I also have extensive arthritis and I just get on with life and eat, drink and do whatever I want. Walking is important to me as I have lots of animals and land. Therefore to find it difficult to move and that climbing steps and stairs was tough was worrying.
Like you my right hip was very sore and still is and as lying on that side hurts I too have bursitis. This however was a separate issue.1 -
@aprilgirl1 - the low back pain is so bad with low fever so I went to ER. They did extensive check. My CoVID test is negative and CT scan shows the bone Mets are stable and no Mets in the area of pain. They said the pain is muscle related. They asked me to take pain meds. I still didn’t understand where my low fever came from. I will keep monitor at this point. It seems extra physical activities are not good for us with bone mets.
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@bluesea, I'm so sorry you are in such terrible pain. Hope the pain meds work and whatever muscle is inflamed starts to heal.
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@aprilgirl1. Thanks. My pain seems better with pain meds. It looks like muscles inflamed. Never know muscles inflammation can cause terrible pain! Still not sure where low fever comes from. Will keep monitor.
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Bluesea20. I am glad the pain med is working. Last year right before Thanksgiving I developed a spasm in my back. Pain med would have been wonderful. It felt like a back spasm but muscle relaxers didn't work. Neither did Tylenol or advil. I can't take Aleve or any strong NAIDs. Saw a chiropractor and just couldn't get relief. I couldn't even lift a bread pan from the oven or put dishes in the dishwasher wash. Eventually the pain lessened but never went away. Fast forward to April. I still found myself limited by my back at different workouts. I was at a back and bicept workout and the coach asked me to try something different. He thought it would allow me to do the movement. I tried it and never made it past trying. My back sent a shooting pain through my body. I thought I was screwed again. Went home and iced it. By evening I never knew I had had back pain. It turns out the my sacroiliac joint went back into place. The chiropractor thought it was that joint but wasn't sure. I was going to see a specialist in January but cancer got in the way. I have had no pain since. I hope your issue resolves itself soon.
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@brutersmom. we have to deal with all kinds pain having this decease. My pain gets better with meds and I stopped meds today. It is okay so far, however I feel tingling in both of arm. I guess it is probably related to Ibrance.
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Bleusea20. My pain wass actually the result on a knee injury. Fortunately I have not had any pain from my cancer.
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Logged on to say hello - it's been quiet on this thread and I hope that means that we are all enjoying the end of summer 2023 .
I am leaving on a 3 week vacation with my husband and some friends , centered around World Cup Rugby games in Southern France. We will visit Portugal and Spain as well . I've never been to these countries (except I have been to Paris when I was 12).
When we bought these World Cup tickets 2 years ago my oncologist told me to get trip insurance but didn't discourage me from making plans. Honestly , I didn't want to plan this far ahead and had concerns it would "jinx " me .
I am happy and relieved that it's 9/1/23 and our trip is here . Furiously living is the state I feel we are in , if we have the energy and stamina .
I am in anyone's pockets who has upcoming scans . Typically I only schedule vacations within scans (3-4 months out) so this was a big leap in my MBC world. We have to keep on keeping on if possible .
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Sounds like a great trip. Enjoy your travels. Share some pictures with us.
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Have a great time, Aprilgirl! I understand "furiously living." That's me too!
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Has anyone ever had a cat scan that shows tree-in-bud nodularity? How did they determine what the actual cause can be. It seems like it can be anything from a virus bacteria, cancer or other types of things that cause inflammation in the lung, according to google?
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brutersmom, how strange that you would ask that. I just had that note in my most recent CT scan. Never heard of it before. I did make an appointment with the pulmonologist because this cough is not getting any better. Do you have symptoms? I had to look it up, too. The tree-in-bud is a "new" finding along with the groundglass opacity.
So far, no one can attach a cause to my cough. "Unknown etiology" is the best they can come up with. I'll be curious to hear what your doctor has to say. Is it Ibrance related? I've been off Ibrance since July. Two times I ended up in Urgent Care because I had such severe spasms after taking the pill.
There was some question as to whether I was silently aspirating, and maybe that was causing the lung issues. A barium swallow test did not show any aspiration, so it's still "unknown cause."
PM me if you'd like.
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Sunshine99 I have no idea. I see the oncologist Wednesday. I am sorta clueless. I feel like my ctscan is incomplete. All the cancer was in my right lung. The hospital pulmonogist stopped in on my 2nd visit and went over some things with me. On of the thing he told me was because of the size of my pleural effusion I had scar tissue in my right lung and when I am able to return to my active lifestyle I might always have some shortness of breath on strenuous exercise and I have found this to be true. I did find that breathing Canadian smok in June bothered me when I was outside. But I also have asthma. In July and August I found that I seemed to find myself short of breath on humid and rainy days. But again that has happen precancer when I would take a walk or whatever. I want the Rehobeth beach Delaware for vacation . Most days were ocean winds or humidity. I did notice my chest felt tight. I only have a small cough which I attribute to post nasal drip. I don't feel like the radiologist did a thorough review of my scan. He only compared it to the scan to rule out a pulmonary embolism. He did not compare it to the 2nd one that was done to determine the extent of the cancer. I was wondering if they will do a biopsy. Not that I necessarily like the idea but I would like to know that it is not cancer which is a possibility because the second ctscan was suggestive that the cancer cells had entered the lymphatic system of my lungs which means it could have traveled. The scan says no evidence of lymphatic disease. But in 2015 I had no cancer cells in my lymphnodes but obviously the cancer traveled some how without being detected.
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This is so crazy. I'm mean, we know something isn't right, but nothing definitive shows up on our scans.
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