Ibrance (Palbociclib)
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Hi Nicolered, so sorry to hear you are suffering with odd mouth sores again. I get them about day 14 each month (I am on 75). I use a mouthwash every time I eat and use a mouth gel which contains a painkiller. 4 days off Ibrance and they disappear.
I live a wild life and have 3 decaffs each day,( not drinking coffee makes no difference to my mouth) sometimes after a medical appointment with a doughnut!!!
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Nicole,
Also remember that some folks had said a few months ago that Biotene rinse is good, and also make sure you are using not a very harsh toothpaste (I bought one for sensitive teeth) and not a very harsh toothbrush (I bought a soft bristle one). Also, CVS sells a generic brand (I think it's theirs) of peroxide sore mouth wash. I think you can do that up to like 3 times a day. I've been doing it when I start to feel something sore inside my mouth.
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Hi Nicole,
I also get a lot of mouth sores. My doc prescribed dexamethasone. I swish it in my mouth daily and so far so good. I will be coming up on my 3rd week in my cycle which is when they usually show up. We'll see if it stops the mouth sores this month.
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denny, you are my kind of rebel!
Nicole, I'm bummed about your mouth sores. I'm still a believer in the yogurt as these sores seem bound to begin in the stomach. I pray you get better soon.
Love from PatGMc
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Bev..and Simone I have the biotene and I think I also have the dexamethasone (I think that was what they gave me like the day before my last ones were gone)
Denny, I didn't know to use it after eating...I am going to start doing that. Denny I loved "I live a wild life and have 3 decaf a day" ha ha ha I have been trying to cut wayyyy down on dairy so in my raisin bran which I am eating now for the bowl movements (didn't want the gluten but have to be able to poop)...I use Macadamia nut milk...*nothing like the taste of real milk though
* but I do put a teaspoon of half and half in my coffee I wont have coffee without it . 
Thats my wild side...and the popcorn from target I had last week end lolI am definitely going to try the rinses more frequently especially now in the beginning. Thank you all so much for replying to me. I don't feel alone in this.
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I really appreciate all the posts you write. My immune system recently dropped so low that I got one of my childhood illnesses again. This time with a strong reaction with fever and large open wounds to the face, ear, mouth and throat. The virus has settled on two brain nerves and causes unbearable pain. Fortunately in recovery! There is a lot we are going through. I bet the oncologist is reducing the drug dose now ... from 100 to 75mg. My children are so small that it is impossible not to be lost in these common viral diseases. Are there more of you who are under 35? My biggest "symptom" is that I'm so sad and scared ... Thanks for keg being in this group.0
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Anna so sorry for what you are going through with that virus I can't even imagine how awful that is. I am so sad to see you have breast cancer so young. Are you still Stage III or are you Stage 4? I hope you have not gotten to Stage 4 but if you have where are your mets?
How long has Ibrance been working for you? Im on my 5th month now *I think* lol
I hope you get some relief and soon!!! ((((hugs))))
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Hi Anna,
I'm sorry to hear you are having so many problems but glad to hear you are on the mend. I can't imagine how difficult it is going through this while taking care of 2 small children. Cancer is very scary and we are all here to support each other. This thread is a mixed age group of MBC women. There is another thread for young women but I don't recall the name of it. You could search for that group if you wish to reach out to other young women.
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For you folks who are also living on the edge, get this:
I have a bag of Hershey's Miniatures for which I make no apologies.
Power to the Dancers!
Love from PatGMc
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Pat,
You are too funny. I don't eat chocolate to often, but we had Smores last weekend and they were delicious😊
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Nicole, so sorry the mouth sores are back. That's poopy. <-- oh wait, you can poop now! If you need a little flavor with your water, have you tried cucumber infused water? So yummy if you like cucumbers. I don't think cucumbers are acidic.
Anna, having BC under the age of 35... ugh! I had Stage 3c at the age of 35. At the time my two girls were 1 and 3. They're now 9 and 11. I still have lots of hope that I'll be around for a lot longer. There are new treatments out that weren't out when I first had BC. ((HUGS))
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Sorry to say that I just read that Lita has passed per her daughter Mica. For some reason I can’t post directly to her family but there is a web site that her daughter has established and she will be posting more soon.
I’m thankful for her great testimony regarding her faith, which she clung to until the end.
Wish I knew her better.
Ginny
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Nicole, I definitely get mouth sores when I’ve over done lemon and lime. Such a pain, literally. Sometimes my whole tongue becomes sore too
My NP told me of another product to help with mouth sores. It’s called Ulcer Ease. It’s over the counter and even available on Amazon.
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Thanks Holli..and Thanks Jen...I will look for that.
Jen I was just praying for you last night and checking if you got your results.
((((hugs)))) while you wait.
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I got my flu shot and my pneumonia shot yesterday at my regular MD and boy did I get a reaction! I couldn't sleep at all last night. I had chills and I was flush and felt like I had a fever (I didn't though). Plus my arm hurts so bad. Never had this kind of reaction before. Thankfully so far today I'm feeling better.
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JACK5IE I was just this last few minutes reading that the CDC found a study that getting the flu shot alongside the pneumonia vaccine increases risk of reaction, especially fever, however this doesn't include the Prevnar 13. Is this your second pneumonia shot? It's the one that has 23 at the end of it....the name of the vaccine has slipped my mind. Or did you get Prevnar 13? I got flu shot this morning and asked how soon I could space out to get Prevnar 13 ( I have not had a pneumonia vaccine before) and the pharmacist said four weeks. WHAT???? I was really surprised but she amended that to say that if I'm in a hurry I could wait two weeks. I didn't get both at once becuase I can't get a vaccine in one of my arms and she didn't want to give me both vaccines at one arm.
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I find that taking Tylenol for the first 24 hours after a flu shot or pneumonia shot helps quite a bit with the reaction and injection site soreness.
I had no issues with the flu shot but the 2nd part of the pneumonia shot really left me achy and sore for like a week! Ouch
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Moomla I did have both shots last year and didn't have this reaction. I wish I just waited and got them at my MO but they didn't have them yet there when I went on Monday for all my other injections. The MD didn't tell me what kind of injection or that I needed a 2nd dose. Last year I just got one dose too. Is there one that requires only one dose?
LoveFromPhilly, I did take Tylenol and still felt awful.
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JACK5IE, Prevnar 13 is a one-time vaccination. You should have a follow-up vaccine pneumovax 23 or something (still slipping my mind) a year later so that's probably what you had. This combo (flu shot and pneumonia 23) is showing at CDC to cause reaction risk not the Prevnar 13 which is probably what you had with your flu shot last year. So the important thing is you're better this morning. Hurray!
Shingrix is also known to cause a reaction with the second shot. I've got to get that one too. Part of me wants to go in and get them all done at once and just get it done!
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Thanks Moomala!
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Jack5ie dang! so sorry!
Our immune systems are so wacky!
On one hand, the fact that you had such a strong response perhaps means that your immune system is doing its job?
When we get sick, it is because all the fabulous cytokines (illness hormones) become activated and release information that tells our bodies to feel achy, feverish, fatigued, etc...so just trying to put a good spin on it all.
sucks to feel crappy though, no doubt about it.
Hope you are on the up-n-up soon!
Hugs,
Philly
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Thank you LoveFromPhilly! I do have a message sent to my MO asking if it's ok that I got a 2nd pneumonia vaccine within a year and also just to let him know I received those vaccines yesterday. Moomala's post prompted me to check, so thank you too Moomala!
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Hi, I have been reading this topic for a while and very thankful for the great information, it has helped me a lot throughout these months. I have a question and hope that somebody could answer. In my last bone scan it appear that I have a very small progression on the bone mets. Luckily my liver mets are stable. My oncologist prefers to continue for now with the same treatment, Ibrance + Femara , trying to squeeze a few more months out of this treatment. I wonder if some of you, who had some progression while on Ibrance, continued on the same treatment, and did the progression stopped or did it get worse?
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Hi Vilma.
I had slight progression (2 places on bone) at 31/2 years, which was not enough to change treatment. We radiated those particular spots so they would not be a problem going forward, and added Celebrex to the mix, (it boosts immune system activity and inhibits PI3K mutant cells, which is one route to progression)- as an NSAID, it also helps with osteoarthritis pain and reduces inflammation throughout the body.
Three clean scans later, that seems to have been well worth it.
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Cure-ious...im sorry I can't remember...just wondering what Grade is your cancer again?
Vilma sorry you had some progression maybe your doctor can try what curious mentioned? Btw what grade is your cancer?
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NicoleRod, did you get a grade with biopsy of MBC? I got a grade in 1995 but I do not see that on my MBC biopsy from April of this year. I was grade 1 in 1995 and every indication is that my current MBC is also not very aggressive. Yet I progressed after just three months on Ibrance.
Vilma I can only say that I have not yet gotten a stable scan but I am still on I/L. I will have scan in two weeks and at that point my MO and I will decide what's happening next. I will have been on Ibrance a total of 6 cycles. If I'm still not stable we are definitely changing the drug. I'm not too happy about this idea but visited with my support group today and was able to talk to several women there who have been on several treatments, including Ibrance and letrozole, and are doing well currently on other medications. I hope you don't have to change after the next scan. I have fought this idea in my head because I'm tolerating Ibrance and letrozole so well, but I've now got myself back on track. I want whatever drug is going to work.
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Moomala,
I'll be curious to see what Nicole says about grade with her MBC biopsy, but I also did not get a grade or a Ki67 score, or whatever that's called. My MO said that they don't usually provide that info on metastatic samples, but only on the original biopsies.
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Moomala...yes I believe they did...I am looking at the surgical pathology report from the liver biopsy right now and it says this:
"Interpertation: By immunohistochemistry, the live metastatic adenocarcinoma is positive for GATA3 and ER, consistent with the known breast primary."
I am taking that to mean yes...it is grade 3 as was the known breast primary. Is that wrong?? lol I pray it is..lol
They also did Ki-67 on that liver biopsy I am high 70%.....
Mouthsore ladies.ok it is now officially a canker sore not a fever sore..I do have the dexamethasone...the problem is the sore is JUST below the inside lip so when is swish it doesn't hit it until I spit out...ughhh lol so I tried soaking a cotton swab and leaving it on it. Question..does the dexamethasone heal it?? Like what exactly is the purpose of that?
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Ok, I'm a little worried. I spoke to the nurse triage at my MO. She told me I received the PPSV23 vaccine just 10 months ago in the MO office. I totally forgot that I had one given to me. Yesterday at my MD office, I received the PPSV23 again (they never asked if I had one before). This is not supposed to be given again for 5 years (the MO triage nurse said 1 year). She told me to call the MD office, which I did. I told them the side effects I had, etc. They told me they would call back, which they did. They checked with a PA and said it should be ok but they are going to double check with the doctor that prescribed it because she wasn't in the office today. They said my symptoms are a normal reaction too but to let them know if they get bad again. I feel like I am getting some symptoms again now...chills, flush. Should I be worried that I have had two vaccines of the same PPSV23? Will it hurt my liver or anything?
ETA...just got a call from the MD office from a doctor. She said it shouldn't harm me at all even though it's not ideal. She said to keep track of my temp and if it doesn't seem to be getting better to call them back right away but that the symptoms are normal and should dissipate in a few days.
Here I am trying to do the right thing for myself and this happens. I guess you have to be your own doctor.
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Well what's done is done JACK5IE - you can't change it now. I am guessing that since your doc didn't say there was any danger then you are okay. I'm glad they called you back and set your mind at ease. For now, just let the symptoms do what they're going to do and from now on you are officially QUITE vaccinated for Pneumonia!
NicoleRod - I too am GATA3. I don't think that correlates to the tumor grade we receive at initial diagnosis. It tends to indicate the HR status but I believe that the prognostic usefulness of GATA3 is not clear. So I'm not sure it's all that important when considering how well one will do on any given treatment. I am not aware that we get a biopsy grade with MBC. I asked my MO once if my MBC was aggressive. She said the biggest factor pointing to that was that it took 24 years to come back. She called that pretty lazy cancer. Yet I progressed at three monhts on ibrance darn it. So to me, if Ibrance is not working on my cancer it isn't that my cancer is aggressive. It's that it's resistant to Ibrance.
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