Ibrance (Palbociclib)
Comments
-
Shetland- Good points. I am new to this cancer center and how they do things. I feel I have bothered them so much with the transition-- getting monthly injection organized so I can have it locally versus traveling to them, then the multiple CBC's due to the low ANC/Ibrance schedule change. I don't know if the verbal report of the CT results during my MO visit would have been just that, verbal. Would they have had a final, typed report available to release or print off at that time?? And, you would think, other patients use the portal too and they would know to release the report to the portal without me having to bug them. Next time I will say that my last CT took x days for me to see on portal and do they have it to print then and there.
0 -
What does anybody do for the constant low grade nausea? Not enough to vomit, just yucky, can’t eat, don’t want to look at food. OTC antacids don’t help. Thought if I dropped to 100 would help. Nope. Don’t know if 75 is my answer either. He said last month I could stop and just stay on letrozole. That’s pretty scary but I can’t deal with this constant nausea. Just called his nurse wanted your thoughts or suggestions too
0 -
Shetland- So I messaged MO nurse this morning after I posted. I thought what the heck. She messaged back. It is a hard stop in the system. All radiological tests-- CT's, etc.-- will not flow to patient portal for 7 days. This allows the patient and doctor time to discuss results before patient sees on Portal. She said they are strongly discouraged from printing out report, supposed to be all electronic. So I guess this is the way it will be from now on-- I will not SEE the results for at least 7 days.
Spookiesmom- Sorry you are having such a time with nausea. I have mild and comes and goes. Not enough to seek intervention. Maybe Zofran tablets. Prescription. Anti-nausea med. Can cause constipation though.
0 -
Spookiesmom - get some fresh ginger, peel a knob of it (1-2 inches worth), and slice into a few big chunks. Put in a mug and pour over hot water, let it steep for a few minutes and then sip it slowly. You can add a little honey to it but with that much ginger you should get some taste through.
That may help settle things enough that you will want to eat - I go through low grade nausea or upset stomach a few times per cycle and this usually does the trick for me (as does eating really slowly).
0 -
thanks, I’ll try that!!
0 -
Hi! I posted a few weeks ago in regards to the new Ibrance tablets and experiencing side effects (GERD, nausea, etc) I never did before with the Ibrance capsules (been on Ibrance 125 mg capsules for 30+ cycles). I've now seen a few more posts from other ladies (Jack5ie, Jen, Tanya) with similar issues. If you have been on Ibrance capsules with no issues and are now experiencing side effects with the new tablet, please call Pfizer and report the issues you are having. CALL 1-844-9-IBRANCE. I did call and let them know. Also, ask your pharmacy for the capsules.. I have received information that the capsules are still going to be available.
0 -
Mari1126...thanks for your suggestion. I will speak to my doctor about it when I see him next. Do you happen to know how long the capsules will be available?
0 -
Jack5ie - the information I received did not say exactly for how long, but said 'available for the foreseeable future'. They were supposed to have completed the transition to tablets in the US this year. I also talked to my doctor, as well as the specialty pharmacy about the side effects I experienced. I believe they have a way to report back. I know my specialty pharmacy did as I was not the only person they heard from in regards to unusual side effects after switching to the new tablets. I also wanted Pfizer to hear from directly from me. Best to you!
0 -
cure-our. Thanks I needed a good kick in the pants. I see a lot of strength And knowledge in the woman that post here so I'm going to tap into that as much as possible. My ophthalmologist has written to my onc asking him to consider an MRI as my eyesight in my left eye has deteriorated to 12/400 after a trabeculectomy/cataract surgery. I seem to have developed macular cysts from Latanoprost. I guess it's a waiting game but I feel that many of you are more on top of your treatment options. I wouldn’t really have thought about asking for an MRI but again Shetland pony mentioned about the contrast dye
She also explained that ibrance would possibly give me another 2 years before progression. I see a lot of woman have had chemo and survived it well and gone on to other treatments I hadn't thought that possible before. Lots to learn. I do try to live in harmony with the cancer, if that makes any sense.
0 -
Hello, Dancers! I was about to send my latest piece in a private message to one of you who recently had me do a commission but decided to share it with all of you instead. The assignment for this commission was to take a list of what these two lifetime friends had in common and tell a bit of their story. Being English teachers and saving the world from bad grammar was part of it.....all those commas and apostrophes! They love BLTs, books, hummingbirds, crows, bees, cows, cherries, Elvis, peonies, hydrangeas, butterflies, popsicles and the beach! Miss Bacon, Lettuce and Tomato on the tree swing is my favorite part....that and her mayonnaise!
It's called "He's Got a-You and Me, Sister, in His Hands" and I'm excited to deliver it next week. Sorry for the bad photo.
Love to all of you from PatGMcFourYears (Ibrance sort of anniversary today!)
0 -
PatGMcFourYears, I love your name and your latest work!! (And I love their idea of saving the world from apostrophes.). I was wondering what was written on the cow. My screen wouldn’t enlarge with any sharpness. Congrats on your Ibrance anniversary. It gives us all hope. 💪
0 -
PatGMcFourYears...yay!!!
0 -
Mari...thanks so much!
0 -
PatGMc: Your artwork is so whimsical! There's an amazing bluegrass musician named Billy Strings. Some of the artwork he uses reminds me of yours.
0 -
PatMcGee, Your art is never-ending interesting! How long have you been doing this, and what drew you into this unique style? Is it hard to take breaks or hard to finish, do you have lots of unfinished works hanging around, or just work on one at a time? It must be such a great place to get a break from cancer (and pretty much everything else going on in the world)..
0 -
PatMcGee, Your art is never-ending interesting! How long have you been doing this, and what drew you into this unique style? Is it hard to take breaks or hard to finish, do you have lots of unfinished works hanging around, or just work on one at a time? There is so much fun in each piece! Working on these must give you a real break from cancer, and pretty much everything else going on in the world...
0 -
Cyn, it often a takes six or seven months to see improvement in Ibrance. Also, the spots on your bones would be snowing up as healing (meaning they were always there but quite small and now are healing and getting picked up on imaging...CTs aren’t great for bone mets so hopefully your getting a nuclear medicine bone scan too. The biopsy question is a good one. And I can’t quite tell from your post but if you were first taking Ibrance on its own, that could be part of the problem as it needs to be taken with Faslodex or Letrozole, let us know what your doctor says.
Pat, it’s so good to see you and thank you for sharing your art
0 -
low grade nausea - a couple of you mentioned this. I've been on Ibrance for a year now, started at 125, last two rounds 100. For that last month or two occasional low grade almost not there nausea. Feels like too much coffee or sugar. Coffee intake has not changed over the last several years, and I tend not to consume a lot of sugar. Maybe the Ibrance?
0 -
BlueGirl - I've notice it can sometimes come on when I've had too many carbs from starchy vegetables/bread/pasta. A few meals of straight veggies and/or fruit and it seems to settle down.
0 -
I’m convinced it’s the ibrance. I dropped to 100 this month, couldn’t finish the 21 days. Stopped 3 days early. One cup of coffee in am. Am diabetic so watch the carbs. I have NO interest in food. I don’t know what I’m going to do. Felt too lousy to get the ginger, DH is stage 4 too, can’t send him to store
0 -
Just back from my second opinion doctor and it was ok. I liked her demeanor and approach - no talking down to me, a natural discussion, straightforward and approachable. I didn't like the hospital as much as my current one, however, but that doesn't really matter once you get into the discussion room. She agrees to the current approach (not surprised, totally expected), no surgery for now and the skin looks really good so other than aesthetics there is nothing to be concerned about with the retraction. I wanted to think over the switch for 24 hours, but:
Pluses -
1) I liked her and how she explained things. She showed me my scans! I felt none of the pressure I do when current doctors call and I feel like I need to get off the phone sharpish. I feel like I could bring her ideas or research and she would listen and consider and discuss. All of my scans, including the one from last week, were already to hand and she had my available paperwork.
2) Its a shorter commute
3) I can access the nurse assistant and the dept secretary more easily than now,
4) I can do my monthly injections at my local GP, which is in a modern building like an American-style clinic an eight minute walk from home
5) She does tumor marker tracking (not currently done) and suggested genetic analysis a little later down the road
6) Scanning would go back to 3 months vs 4 that I am currently on, and I would go to 3 monthly Xgeva after a few monthly injections.
Minuses-
1) The hospital itself its jammed into a 19th century building, and for private I have seen much nicer suites, although the examination room was very nice. There was a strange painting of Princess Diana above a baby grand piano down one hall.
2) I really do like my current hospital (its more modern in the new building) and I guess I feel some nostalgia for it, but most of the time after I leave I feel frustrated due to the inefficiency.
The whole point of making this change was to feel more informed and in control of the situation, which this would do. Hospital aesthetics really shouldn't matter that much, but the current one only feels good because its only operating at 65%. I should remember the days when I was waiting over an hour for bloodwork!
On the plus side my scans from last week show further bone healing and the breast tumor shrank a bit more. And the cancer is concentrated in L3, L4, L5, S1 only - not in the ribs or anywhere else. She said it had probably been there at least a year so even if I had gone in March 19 to be evaluated it would have been the same story. The tumor also grew straight under the nipple like I thought. Essentially, had I had a mammogram at 40 (which isn't recommended here) it may have been enough to have caught it early. But I also know that the lumbar MRI I had in February '17 was showing degeneration in L5, L4 and slight in L3. I would be curious to see that scan up against the Februrary '20 MRI.
It was a good meeting and I am glad I did it, unfortunately it dredged up a lot of emotions and I am not sure why - if anyone has insight into that I would be open to it.
0 -
Spookies - ah, I hear you about the getting to the store. Any change to Amazon Prime some in? Or other grocery delivery? Alternatively - I started taking my letrozole in the morning and then Ibrance at lunch and that seems to have helped the gastro issues as well. It sucks to not want to eat, its almost worse than direct pain in some ways. I hope you can get it sorted out soon
0 -
Sondra- Sounds like a good visit overall. Woohoo on the further bone healing and breast tumor shrinkage. The aesthetics should not matter, but I can see the thought if the facility looks old/ not updated one thinks the care is not up to date. But sounds like the doctor is got some good thinking-- had scans ready, showed you the scans, willing to listen, suggestion of genetic testing and tumor marker testing, scanning more frequent. And good you have shorter commute.
RK2020- Didn't you have PET last week?
I have MRI this Saturday to follow up the "something" they saw on the CT of the liver. Should know more beginning of next week.
0 -
Sondra I am happy for you, seems like you had a productive meeting with the new MO. Congratulations on good news too, healing bones and tumor shrinkage, meaning the medications have been working well, So your first onc team chose the right protocol for you and this is hard decision to be made between 2 goods. You wanted to be more involved with the process and new MO gives you this opportunity. and in new clinic (old building!) administration is more easy-access. I would go for that. As we both experience in crowded clinics ahhh long waiting for blood test and injections, I hate it, I would go for less headache if I had a choice.
I understand your feelings, I had and still have the same feeling as you do for old MO, and I couldn’t help myself to not thinking about that. I was told that I get used to my old MO method so change would add more stress on me. So after days of thinking I decided to continue with my old MO but try to get him in much TALK with me! I am going to sort things out today, many phone calls should I make.... I hope no more stress for this today. Now I have to be more patient with my old MO new misbehaved nurse, she all the time picking at me for no reason, and I don’t know how to fix it?? should I report her?Candy good luck with your mri, I hope you get a good result.
0 -
I-beat-it----Nurse is picking on you??!!! What does she say? Not cool.
0 -
Strange story: On Friday, met with a practitioner who told me that on a spiritual level my cancer was cured, and my body would 'catch up'. (I'll accept that, but I'm not quitting my standard medical care.) Then read the news about the president and CV-19. And my former SIL texted to say she has DCIS. Then I get a call from "Minimally Invasive" (That's their name! Does that sound reassuring?) to schedule a biopsy on the new growth in my armpit lymph nodes. A few hours after that they call back and say the radiologist denied my biopsy after looking at my last scan because the node is too small.
Saw my oncologist on Monday. "I'm going to take this as good news." I said.
He said, "It's a 'good disappointment.' Let's just stay on your current regimen."
So I continue on Ibrance, at the lowest dose, and a 50% Faslodex dosage (one buttshot, instead of two). I've had 35 cycles of Ibrance, despite being on it for 50 months, because my WBC get so low and take a while to rebound.
Is the entire month of October going to be one long Advent Calendar of Weirdness? I think so. I've got my TJ Hooker avatar, for protection.
0 -
NineTwelve- Love your avatar. Grew up on TJ Hooker. Had a crush on him and his partner- what was his name?
I got my every 2 week CBC today. Still on the 5/2 schedule of Ibrance. ANC 900 today, mid cycle. Woohoo. Next check in 2 weeks at beginning of next cycle. Hoping we found the answer to the low ANC issue--5/2 dosing schedule.
MRI this Saturday to look at the possible 7mm new met in the liver---get a better view of things. Hoping can stay on Ibrance for now.
0 -
Sondra - sounds like a good change! Changing docs is hard but we have to really make sure we get the care and the communication we need and DESERVE.
I-beat-it- nurse is a bully?? Not okay, it is so frustrating when people that are "gate keepers" are also power trippers.
NineTwelve, love your avatar! Sounds like good news overall. 35 cycles on Ibrance, good for you!
My quarterly petscan is this Friday, meet with onc on monday and will start cycle 11 or 12 of Ibrance.
0 -
Hi All, as usual, I 'm checking in to share stable scan result after 19 months which I think 21 cycles. I'm starting cycle 22 tonight at 75mg
Thanks all for the support from this board.
Hugs to All
0 -
Nine twelve... made me laugh!
Candy sounding positive which is great to see.
42... good for you!
0
