Ibrance (Palbociclib)
Comments
-
MomATT, my onc does not give Neupogen or Neulasta with Ibrance. It's such a new drug, I think some oncs may be trying it, but it was not part of the trials protocol or recommended.
And the white puff can happen if the pill gets stuck and starts to dissolve in your esophagus. A couple of women had reported it in the FB Ibrance group, which is why I wasn't totally freaked out when it happened to me..
0 -
I would have freaked out. Only the puff and no other symptoms of it stuck in your throat? Thanks for the heads up.
My MO says the nuestala shot is only for iv chemo. No blood transfusions either. Time and a rainbow diet. I read walking/exercise boosts your counts. I've also been doing Jin shin Jytsu. Can't remember if I posted it here or not.
I've had a lot of swelling on right side. Was sent for an ultrasound but no clot. Guess lymphedema but it's not budging much.
Have a huge appetite this week so guess my taste buds change more than I realized. Still prefer sour and never been a sour fan before. Can only taste the carbonation in soda. No flavors or sugar.
Kaption. Sorry about your news. It's hard to focus on the positive. Keep us posted.
I think there was someone else that needed sympathy with a unfavorable response but can't remember who. Sorry!
I go in for blood tests, xgeva and hopefully the OK to continue. I'm at 100. Been spring cleaning so it sorta works for me. Still have days that I'm done before my kids bedtime.
0 -
I inew I was forgetting something. I had no mouth sores with ac. I drank lemon water and used baking soda toothpaste. Got the magic mouthwash but didn't care for it.
Have had a couple tiny sores that disappear in a day or two. Using a special dry mouth toothpaste from the dentist. It was pricy. Still drinking lemon water.
Can't decide if weight gain is from fluid or actual weight gain. I know I've eaten more this week but your pants don't usually get tight overnight! I just ordered new pants. Hope I don't have to exchange them:)
0 -
Deanna, my onc also will not use Neupogen. Thank goodness my counts have not been low enough for it to be a concern yet.
0 -
lalady, thank you so much for the thoughtful offer, but I bought that book when you mentioned it a few days ago. It's on my iPad and will be my next book!!
Thank you all for the support and caring. DH and I have decided to focus on the very good news that there were no brain lesions! We'll see what next week's scans bring, but a change in treatment is not necessarily bad.
I swear this is the best board!❤️ I've read on the bone mets board and on the Faslodex board. I see some of you over there. But overall, this is the spot where I feel the most positive energy. Thank you.
Speaking of this board, I occasionally check on Romansma and see that she stopped posting in December. Think of her often. Is anyone in touch
0 -
ZIz, I have all fingers and toes crossed, hoping you get good results today from your scans in spite of rising TMs. Please stop in and let us know when you have time.
Deanna, That "smoke" thing is truly bizarre! Thanks for posting about it. I have trouble swallowing that big capsule sometimes.
Kaption, Sorry to hear about the skull met, it's so scary having anything by our brains, but I congratulate you and DH on your positive attitude. Hope you are able to shake that sinus infection and start feeling better. Good luck on next weeks scans. Woodylb has been updating us regarding Romansma/Hope on the Androgen Receptor Testing & Treatment thread.
I have a weird question for you gals. I find myself constantly clenching my hands into fists, both while awake and asleep. I took a month off Ibrance for a GI procedure and didn't notice myself doing it during that month off. Back to Ibrance now and clenching again. WTH? Anyone else? I lead a pretty low stress life, so I don't think that is the cause.
0 -
Good questions about Romansma - I'd love to hear from her. I hope she's well and enjoying what she started with this great thread. It's been very helpful to me.
Amy
0 -
You have a great positive attitude Kaption. I am sending more positive energy your way!
0 -
Ohmygosh, jobur... I realized I was clenching my fists -- elbows on desk and doing it with my hands -- as I read your comment! And I hadn't realized it until you said it, but I absolutely do it. I think it's the horribly achy finger joints -- especially in the a.m. -- which for me are much worse now that I am trying to take curcumin at a different time than I take my Ibrance, and in the process missing taking the curcumin. Do your fingers also hurt or ache?
0 -
Deanna, OMG, I'm not crazy after all?! I have arthritis in my thumbs, so they ache a lot, but my hands aren't painful otherwise except when I clench them! Sorry yours are so painful. I don't take much for supplements, but have been thinking of trying curcumin. Any advice on when to take it, what kind to get, etc?
What in the world would we do without this forum? I can't imagine dealing with mbc without my friends here!
0 -
jobur, I had actually asked my onc about taking curcumin w/Ibrance, and she said that while there is no known contradiction, if I didn't really need it, why take it? So with that advice in mind, I've tried not taking it -- or at least not taking it at the same time as my Ibrance -- but when I miss doses, as I have been lately, my joint pain really kicks in. But you also have to take it with food (or it can upset your stomach), so I've been forgetting to take it. Anyway, the two brands I prefer are Life Extension and Jarrow.
Speaking of contradictions, there was an interesting exchange in the FB Ibrance group yesterday. Someone posted that you shouldn't eat pomegranate while on Ibrance, and someone else suggested that blood oranges are a no-no. So, long story short, I found those sources and also called Pfizer to figure out what the heck was going on. According to Pfizer, the only food exclusion is grapefruit and grapefruit juice -- and this is per info' dated 2/2016. But for what it's worth, here are the other two links that mention the pomegranates and/or Seville oranges. The BCO one is especially good b'cuz it mentions meds that can be a problem. I have no idea where the pomegranate or Seville (not blood) orange info came from, but it's might be worth knowing so that you can decide for yourselves.
http://www.breastcancer.org/treatment/targeted_the...
http://www.webmd.com/drugs/2/drug-167704/ibrance-o...
Editing to add another interesting site re. possible drug interactions w/Ibrance: http://www.drugs.com/drug-interactions/palbociclib,ibrance.html
0 -
Good information, Deanna. Never would have thought about pomegranates! Thanks.
0 -
jobur - I haven't found myself clenching my fists but I am constantly finding myself clenching my teeth throughout the day. Doesn't necessarily seem to be related to stress (not like we are all not under a lot of stress, right?) But it seems to come and go for no apparent reason.
0 -
I continue to learn from this thread. I'm in the middle of cycle #5 and I'm having lots of joint and bone pain, especially at night. It seems like if I stay in one position too long (especially laying down), I'm in agony. I clench my fists at night too! And ooooh it hurts when I wake up and try to stretch them out. The fun of Ibrance!
0 -
Kaption and Amy, I just saw on FB that Hope (Romansma) was able to have chemo today. And here's a thread where one of her friends has been posting updates. https://community.breastcancer.org/forum/8/topics/...
steelrose, I posted a photo on the Bone Mets thread of a mattress topper my hubby picked up for me (@ Wal-Mart) that has been a huge help with sleeping more comfortably. I was just finding our thick foam mattress pad too hard these days, and improvised padding wasn't working nearly as well as this orthopedic pad does. Just an idea if it would help you or anyone else sleep more comfortably. I can repost the pix if anyone is interested.
0 -
Deanna, thanks for the info on Hope.
And, I'd love to be in the FB group. Is it a closed group?
I'd also love a link to the mattress pad you mentioned. I'm ok now in most positions, but I can see needing it some day.
0 -
Kaption, yes, closed group(s). I'll PM you the FB info. There are actually two groups. Really a great group of women, with some crossover between the groups and BCO.
And this is the inexpensive mattress pad that had made a huge difference in my sleep quality.
0 -
Thank you, Deanna! I've been thinking about getting a new mattress pad and will check this one out. Like the "Made in the USA" too:)
0 -
Thanks, Deanna. I think I turned on my PM accessibility.
0 -
Morning ladies!! Been a little worried and under the weather since Tuesday. The constipation has been a struggle for me on these meds. I have tried everything and nothing is working. I now have rectal bleeding. Along with that, I am having abdominal pain only on my right side, liver twinges and a burning pain on my back where my bra clasp is. I at first thought, I have gained weight so maybe bra is too small going around, but the sharp pains are there when I don't have it on. Nervous because my PET was clear with no progression in January... Waiting for MO's office to open. Oh and I supposed to fly to Chicago tomorrow. I really have been looking forward to this trip
Monika
0 -
So sorry Monika. I am glad you are contacting your MO. My docs always suggest Miralax. I use it sometimes, also eat raisins and other high fiber foods.
But, some of what you are describing sounds like more than constipation. Let us know what your MO says.
0 -
Monika - I'm so sorry to hear you are having these unexplained symptoms. I hope you can get in with your MO and that it doesn't interfere with your trip. Wishing you well!
0 -
Oh, Monika, I'm so sorry about your concerns, but I have had all of them at times as well, and I do think it might well be just Ibrance SEs, including constipation and bleeding from hemorrhoids (similar to nosebleeds due to low counts). This med can really do a number on our heads, and some cycles -- even later ones -- just come on rougher out of the blue. Of course you have to call your onc, but chances are if you had a clear scan in January, it's just this drug giving you a rough week, so try not to worry too much. (((Hugs))) and I hope you feel well enough to travel tomorrow. Deanna
PS ~ You said you've tried everything for the constipation, so I thought I would throw out what works the best for me... A big glass of water with lemon first thing in the a.m.; matcha green tea (2 big cups); and if needed, Activia yogurt. I'm always interested in what other natural things help.
0 -
there's a constipation thread.
https://community.breastcancer.org/forum/6/topics/781867?page=35#top
Couple prunes a day and magnesium every night helps me. But it's March and St Patrick's Day. Try some brown soda bread. Yummy! Full of fiber.
Enjoy your time and try not to worry. Ibrance can not play nicely. I am considering making an toilet kit with wipes and poo pourri for when I'm not home.I had bloody symptoms too that cleared up when I dropped down a dose.
Miralax was even recommended for some of my little ones when I was teaching preschool.
0 -
Miralax has been very effective for me, best thing is NO taste at all
0 -
Thanks ladies!! Got some Miralax and Preparation H!
0 -
Monika so sorry you are dealing with these unpleasant issues. Were you able to speak with MO? Feel better.
0 -
Someone was asking about sore mouths, mine only lasted about 2 cycles and if I put the ibrance in a small amount of marshmallow fluff or icing and then took the capsule my mouth didn't get sore at all. Salt and baking soda in warm water for a swish also helped.
Marilyn
0 -
Monika I'm sorry about your concerns, let's hope it is nothing major.
I have my CT result and and no progression the only concern is in my lungs has it took ver little uptake.
I'll probably be moving to some on from ibrance letrozole combo.
The thing is as I live in Costa Rica and my dr is in the USA I have to wait to hear from him or his assistant.
My MO here is good but doesn't know much about the ibrance.
Cheers
0 -
Theziz, that sounds like mostly good news. Let us know what your US doctor says. How long have you been on Ibrance
0
