Ibrance (Palbociclib)
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@brutersmom I think it's a man thing. Mine falls asleep and claims he's listening. I am sorry that he isn't as supportive as he should be, but it's a new challenge for him also. Don't you feel like someone flicked a switch the day we were diagnosed and we've gone from the everyday living our best life to the darker side of the unknown. It seems like everyone that's not in our shoes are oblivious to our physical and mental challenges. Tell him how you feel. These drugs are brutal as is the cancer in our bodies.
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Irishlove,
I got mouthsores from Ibrance in the beginning. What worked best for me was eating Greek yogurt. I still try to have several servings of plain, non-fat greek yogurt each week and have no problems.
UTI's-I've had a couple of them on Ibrance
Haven't had a rash or trunkal lymphema. Hope your side effects clear up soon.
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Irishlove. My dentist recommended to things to help reduce moth sore, dry mouth, irritated throat and they helped alot. First was stop using any toothpaste that has sodium laurel sulfate. Second she has me use xclear sinus rinse 2×s a day during the last 2 weeks of ibrance. I mix 1 pack in 8 ounces of water. When I want to use it I pour it in a cup and swish. It really helps. If your mouth is dry you can do it more often.
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Irishlove sounds about right. He also does the old I'm listening, just resting my eyes. I think they are wired very different. I was hoping that his scare with sepsis two weeks ago might have changed his thinking a bit. Sometimes he says things that are so off the wall I just shake my head.
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Hi everyone. I have a question. I am on Faslodex and Ibrance. I have noticed a couple of days after I get my Faslodex shots, I get a visual migraine in one eye. It seems to get better until I start my cycle of Ibrance.. then I get another visual migraine. Does anyone else experience this? I got them when I was young around my menstrual cycle and off and on since then. Now they seem to be following a pattern. They always throw me for a loop. They come on one side, last about half an hour and then go away. I have never been able to stop being frightened of them. Anyone else?
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Gigil- is your visual aura followed by a headache? do you take any Advil or other drug during the aura to try to mitigate the headache?
I had infrequent migraines with aura since my 30s, and took naproxen during the aura which made the headache mild. during each change of cancer drugs I got an increase in auras. especially changes in estrogen treatment. I got so many at the start of Xeloda that I stopped taking meds to prevent a headache, they also got to be more complex auras (grids instead of fortification) many per day- they didn't turn into headaches though. now they are back to once every few years. during this frequent complex time I eventually had a brain MRI although my MO said it wasn't a sign of brain mets- the MRI was normal. I am no longer frightened of them, but, would let your MO know.
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Irishlove and brutersmom
My husband is a pro at multitasking - he can ignore what I say and forget it at the same time.
Thank goodness for everyone here and the support and information they provide.
Hugs,
Eleanora
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Eleonora my husband can't multitask. He never could but boy does he have selective hearing loss. There are times I just have to.shake my head at the things he says. I agree if it weren't for these groups I would be lost.
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Irishlove and brutersmom
Couldn't resist sharing.
Eleanora
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Hello everyone, question for those who've been on ibrance for a while: my doctor's office said I could now move to every three months for labs, after being monitored monthly for over two years. Is anyone else doing their labs less frequently than monthly? Not that I would mind being poked less often, just feel a bit concerned about ANC levels.
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I stopped having monthly labs sometime during my first year of Ibrance. I get Xgeva quarterly and have labs done at that time. We are not overly worried about my ANC. It is often below 1.0 but doesn't seem to be a real problem. My MO explains that neutropenia from Ibrance is difference that neutropenia from IV chemo. My white blood cells can jump up when they need to=they are being suppressed, not destroyed.
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I am on my 20th cycle and get ANC done every 3 months
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As I am on fulvestrant (injections ) I go in monthly for the shots and do a blood test at that time. My onc said I can go 6 months between scans but im more comfortable with scans every 3-4 months . Have pt/ctscans tomorrow !
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Aprilgirl-Best wishes for your scans tomorrow.
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aprilgirl, my MO also offered me 6-month scans, but I prefer to stick with the 3-month schedule.
In your pocket for your scans tomorrow.
My MO is letting me take a 2-week break from the Ibrance. I had such bad esophageal spasms yesterday after taking my Ibrance. I ended up vomiting all day, producing huge amount of mucus that I couldn't swallow. I lost 4 pounds in 24 hours and ended up in Urgent Care getting IV fluids and Zofran. Blood work, scans, x-rays, EKG - the whole nine yards. Nice medical team, at least…
Some new stuff showed up in my lungs on the CT scan. I'm better today, but man, yesterday was rough. Poor DH felt so bad for me.
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Chicagoan, thank you for your response, I think I was a little taken aback at the idea of doing labs less frequently because I didn't know that was an option.
Aprilgirl, definitely in your pocket for your scans tomorrow! Hope you get to treat yourself to something lovely, and dare I say perhaps something delicious, afterwards.
Sunshine, yesterday sounds like it was truly awful for you! Glad today is better, keep us posted on whatever might be going on in your lungs. Hugs to you.
I said this recently on another thread, but damn, we go through a lot with this diagnosis. Grateful for you all here, hoping we can keep on keeping on for some time yet
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Sf-cakes. I hope the reduced blood work works for you. I would love doing that. I am such a hard stick but right now my labs are on a slow decline each month so I am stuck for a while.
Sunshine I hope you are feeling better.
Aprilgirl good luck with your scans. It's been 6 months. I have not had any scans yet. He prefers to wait at least 6 months in the beginning unless there are symptoms. Don't know what will happen ongoing. I haven't asked.
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@aprilgirl1 Good luck with your scans tomorrow.
I get a lot of blood tests, seems every two weeks. Wouldn't mind going two months. Had 3 scans in 4 months. One more pet August 8th to go over areas to start radiation on. I just had a ct scan two days ago while in the hospital for an MS attack. The hospitalist only would say no brain mets a very small pleural effusion and rest stable from last scan in June. Didn't receive a report in my portal yet. Solumedrol was a good remedy for me but it did shoot up ANC. I declined insulin. Never had ANC problems in past and it doesn't run in my family. It dropped pretty quickly after last dose.
Back on Ibrance after missing 2 doses. Just a reminder that UPS (if I recall correctly) is the one going on strike and they ship my Ibrance. Gotta call them for next supply and see what they plan on doing.
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I'm feeling better and my MO ok'd a two break from the Ibrance. I really think it was the most recent trigger for the esophageal spasms. I have a video visit with her in two weeks to discuss my meds.
Hope everyone is doing well today. Irish, you've really been through it and I'm so sorry! I hope UPS can prioritize your order or that your specialty pharmacy can use another carrier. I'm mean, it's not like you ordered something like yarn! (My most recent purchase.)
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I recently started developing burning in my toes. I thought I might have gotten fungal infection so I treated the area but it did not improve. Other then the burning there is no rash or anything so I believe I am developing neuropathy which ibrance can cause. Can B 12 also be an issue. My red count keeps dropping, I tire easily and even though I am on effexor I am still moody. I did ask my oncologist a couple of months ago. He felt some of what I was experiencing was my reaction to Letrozle. I see my PCP week and I am going to ask him. Just want to sort thing out.
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Thanks for the scan support! As I was about to leave to drive to the cancer center early this am (6:30am!) I got a call from "nuclear medicine" that my scan was canceled due to "a third party contractor not able to deliver a necessary component on time" - I think it was the contrast dye. Although I am disappointed/frustrated as I took the day off from work, had my special pet scan clothes on (no metal, no bra, etc), am wearing my lucky socks and of course had been fasting. Since I don't have specific concerns (this was a routine scan to confirm treatment is still working ) I am just thankful that they were able to reach me before I drove on to the ferry. I am waiting to get rescheduled. Like all of us, it's a lot to juggle treatment appts along with work and life. I am taking next week off to visit my sister and my very elderly parents who are both having medical issues.
Irishlove, I am sorry you have MS complications on top of stage 4 BC. Geez louise.
Sunshine99 - I am so sorry you have been sick and have the esophagus issues - relieve that you were hospitalized and stopped getting sick but it's alot to deal with!
Brutersmom - also sorry to know you are having issues.
Sending love and support to all of y'all while we wade through choppy waters! Hoping we cross to the calm waters and can share a refreshing "virtual" drink!
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Aprilgirl-What a bummer about it being canceled last minute. It is tough to juggle everything.
Brutersmom-My feet sometimes burned and got red the first year I was on Ibrance. Then it just stopped. It would happen if I walked more than usual, especially if the weather was hot. I did wind up having to buy shoes in a larger size-I've gone up now almost a full size these 7 years. I don't know if it is Ibrance, letrozole or aging.
Sunshine and Irishlove-hope things calm down now-you've both been through a lot this past week.
Malebc-Good to see you.
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aprilgirl, I'm sorry your scan got cancelled. I have my "scan-day outfit" too. No zippers, buttons, snaps, etc. I'll have to look into getting some lucky socks.
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Chicagoan, your post got me to thinking about the pain. I love berkenstock sandals. They seem to have stopped making the styles I like so last year I bought the traditional style. It only got hot here at the end of June and between rain and smoke I did not wear them much. I kept thinking about what you said and this morning I put on my old berkenstocks. I am thinking it is the sandals. No pain today. I will confirm by wearing the old ones again tomorrow. I am trying to figure out if the new sandal is putting pressure on a different spot that is causing the pain or if there is something on the foot bed. Thanks for your response.
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Brutersmom- I got new Birkenstocks about a year ago (Boston style- so closed toe) and I love them- so comfortable. they do tell you to break them in over several wearings. I got Birkenstock sandals recently with back strap and due to cold weather haven't worn them as much- are slowly getting more broken in tho.
The Boston style got so popular that they were hard to find - but, I think that is resolved and new colors have been added. I rarely take mine off!
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I’d love to hear more about the Berkenstocks. I never owned a pair but would consider buying them. What would be a good style choice?
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Devinemrsm. It depends what you like. I started waring them years ago when I injured my heal pads. I like they styles that do not go over my arch because my instep is high.
Nkb. They are broken in. I think the problem is the one causing the issue goes over my instep and puts pressure on something that is causing the sensation. Don't have that issue with any of my other ones.
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I am looking for suggestions again. I have sever mood swings , night sweats, and sleeplessness for Letrozole. They all went away when I took a break from Letrozole. I was prescribed effexor which as really helped with the mood swings and night sweats. Unfortunately I still having trouble with falling asleep. Melatonin and Claritin did not help. I saw my pcp today he ordered labs for b vitamins and iron just to make sure nothing else is going on. They came back in the middle of the range. So they are good. I tried hydroxyzine and it made my hand shake so I had to stop. I tried ambien and it helps but the last 2 nights it didn't help me fall a sleep. I am wondering if anyone on Effexr has sleep issues and what works for them?
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Hi all,
SFCake, I was thinking about 3 month blood test instead of monthly too.
My MO is messy and extremely unorganized, she usually forgets to place an order for my scans so I have to call call and call until her nurse bothers to let her know, at the end they would cover up their mistake by a cheap comment like you are worry too much! she never follows up on any scans…. my last scan was taken in 6months, 2-3 months late. it showed a low density in liver too small to characterize close imaging follow up is recommended, stable lung nodules and increase in size of breast nodule. my team disagreed breast surgery when I diagnosed so primary tumor is in my breast. MO wants to change my treatment- she is totally against target therapy- or scan in 3 month, I chose scan in 3 month. so now I need to search for next line, new treatments, surgery/ radiation, because I don't trust her judgment, I should prepare and know my options. any words of wisdom? what is next line after ibrance? Thanks
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nkb no pain with the auras they are starting to follow a pattern. I have actually had them off and on since peri-menopause. Thanks for sharing you experience. They definitely seem to be related to estrogen suppression.
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