Ibrance (Palbociclib)
Comments
-
Pearlady my daughter is only on Ibrance/Letrozole she was on Herc 5 mos ago w Perj and Abraxane did not work well for her at all As a matter of fact, I just started a thread
Topic: STAGE IV MBC W BONE METS/TRIPLE POS. TREATMENT WITH IBRANCE
because I also wanted to have ladies chime in and say if they had experience with Her2+. Check it out if we'll get ppl posting.
Pearladay what was the explanation of your Onco? Or were they just shooting in the dark? Also what made them think t add Herc to it? That could be interesting.
How is the situation with your blood counts? Do they still do BT often?Thank you so much
0 -
I was NED on herceptin and Letrozole for almost 5 years. When I progressed my onc said that I would still continue on herceptin. He said with other women in my situation when he stopped the herceptin the cancer had become very aggressive. So I have been taking herceptin along with other treatments since 2003. The only time I discontinued herceptin is when I was taking Kadcyla which did not work for me. I get my counts checked every 3 weeks when I get the herceptin. The white counts areally a bit low, but the others have been ok. I usually take one neopogen during each cycle. I know most oncs don't prescribe that but so far it has worked for me.
I will check out the thread that you started.
0 -
Pearlady - So great to hear from you. Glad you are doing ok. We all understand the need to take a break from the boards sometimes. Thanks for the info you continue to share!
0 -
Pearlady... I was just thinking of you yesterday! Glad to hear from. Totally understand the needed break!
Monika
0 -
Hi ladies. I am going to have to review the rthread as I know I have missed a lot. Sometimes it's all a bit overwhelming. Hope you are all doing well on Ibrance. I get my TMs checked very 3 weeks when I get my herceptin. Every time I go I am anticipating the worst. Very stressful as I am sure it is for all of us. Right now I am focused on the neuropathy issues and am starting PT today. Hoping the Ibrance continus to work. I have been on many different treatments as you can see and this is definitely one of the better ones for me.
0 -
Ladies, I suspect that on Wednesday my onc and I will decide to add Ibrance to my current regimen of Xgeva, Femara and Faslodex. It's not for sure and will depend on the tumor marker result.
Forgive me for not hunting this down, but with 110 pages in the thread it's a lot of reading. . .
Are there any tips and tricks for taking this med (with food, without food, morning, evening, etc.)? Is there a list of tips some page/date you can point me to?
I gather the main SE is fatigue, along with the [immune system] effects of the drop in neutrophils.
Should I expect the fatigue to get slowly worse through the 21 days? Then fine for 7 days? Or will I feel like dirt for one week out of the month? I have a pretty brutal [work] travel schedule this spring and want to time the cycles so that I feel the best when I need to.
Thanks in advance for your advice to an Ibrance newbie.
0 -
Pearlady got you there. Hope we get more ladies with the same status, it would be very helpful and less lonely. Thanks so much. I will ask about Herc the next time we see him. Herc for 6 mos did not help at all, there was much progression with it. We just kept hoping it will turn around.
pajim my daughter just started on it, so I would not be the best person to advise you. But some have said it may be easier to take during the day, so that's what she is doing. WBC down by the 11th day already, really low, she had to stop(like everyone else), for a few days then will restart, then BT again. best of luck!
0 -
pajim, you definitely have to take it with food. I started out taking it after dinner, but since we eat late and I was having some trouble sleeping, I've switched to lunch time. The only food you have to avoid is grapefruit and grapefruit juice because it somehow intensifies the drug. Not taking it on a full stomach can result in reflux, indigestion, heartburn, etc. -- things I've never had before, but have since Ibrance.
A drop in WBCs (see the charts a page or two back) is totally expected and has something to do with the way the drug works. So you may be more susceptible to catching a cold or other bug when your neutrophil count is low, especially during days 21-28 of the cycle, and possibly a few days beyond. Your neutrophil (granulocyte) count has to be at least at1000 to restart Ibrance each cycle. I and many of us have to wait a few days beyond that off week for them to rebound.
We all complain about the SEs, but in truth, I think it's a very tolerable drug, especially now that I have a few cycles under my belt and know what to anticipate. Some people do get tired. For me, it's more a general malaise than a fatigue. You may get mouth sores. You may be gassy or bloated, which I'm now starting to believe might be caused by the Faslodex I'm on as much as the Ibrance, because I had it really badly the few days after my Faslodex shots and it was my off week for Ibrance. It might also have a lot to do with certain foods, so you may want to be careful about eating anything that gives you the least bit of gas because chances are it will be worse with Ibrance.
As far as traveling, my local onc had given me an RX for a really strong antibiotic (forget the name, but I looked it up and it was for pneumonia) before a planned trip, and I was so glad he did because thankfully I had it on hand when I got sick in LV. Talk to your onc, but I would definitely recommend having an antibiotic on-hand if your travel entails flying, hotel rooms and that kind of exposure to crowded environments.
Hope this helps. I'm sure others can add their experiences and tips.
0 -
Pajim,
You definitely need to take Ibrance with food because the digestives "juices" in your stomach help it work. If you take Prilosec or something similar, you need to wait 2 hours later to take it, so it doesn't interact with Ibrance. I take mine at breakfast because that's my most consistently timed meal.
As others have said, the main SE is fatigue and the blood count issues. I've really only had one cold this winter, and I recovered quickly. The fatigue has not really gotten worse over time. I've been on Ibrance and Femara since last June
Best wishes to you.
0 -
Hi Pajim - We have a wide range of side effect experience here - some more so, but many less. I have personally found it to be pretty easy to tolerate. Due to low neutrophil counts, my dosage was dropped to 75 mg, and I did notice a definite decrease in side effects when I was dropped down, so that may impact my experience. I get an occasional random mouth ulcer that lasts for a day. On the highest dosage, I had an occasional bit of blood when I blew my nose, but not on lower dose. I had a lot of leg cramps at night at first -- not sure what that was due to or even if Ibrance-related--but they have stopped.
As for fatigue, I don't really notice it too much myself. It is certainly nothing like my experience was with early stage chemo & just feeling completely wiped out for a couple of days. I can't say that I really notice too much of a difference from my days on and days off, so that part is an individual thing, I guess. I'm ready to go to bed earlier -- that's the main thing. I have not experienced any digestive issues. My hair has thinned, but could be due to the lowered estrogen/letrozole. Overall, for me it has been well tolerated. Wishing you well.
0 -
Pajim, regarding the Ibrance cycle and fatigue "schedule"-- Most energy the second half of the week off (week four) and into the first half of week one. Most fatigue during the last week on (week three). This is what I experience, and I remember some others on this thread saying something similar.
0 -
I was taking Ibrance and letrozole at dinner time. 5:30-6 time range. I have slowly been moving it up a half hour and today it was at 3pm. I want to get to a breakfast cycle. I am afraid to just jump to breakfast time. Hopefully I get there in 12 days. I feel great during the day and have a hard time with sleeping.0
-
I also take breakfast which has worked well for me. Fatigue is the hardest SE. I find the Last week on it to the first few days of the break the hardest. I am on 75 mg. Had a pretty hard time on the 100mg with fatigue. Could not work during the day and take care of daughter and house at night when I was on 100 mg.
0 -
tomorrow is my last day of 125. I am worthless tonight. Didn't make dinner or do much homework. I hope to be better by the weekend. Just in time for basketball games. Im tired but can't really sleep yet. Just can't be bothered. Is that what your fatigue is like?
I've also had some blood nose and bottom the last few days. Not a true bleed. I'm assuming this is all part of it?
0 -
The bloody nose could be from low platelets. Ashwaghanda (sp) works well for that. One pill twice daily before meals.
0 -
I have been on Ibrance since June 2015. I dropped down to the 100mg in October as the 125mg wiped me out completely. Joint pain has been a bear for me and got worse after right after Thanksgiving, seemed like out of nowhere. It also the time I has my rapid weight gain as well. I am medically induced into menopause, so I am sure that is part of the problem. I still work full time, so I usually take mine at dinner time. I have to take a sleep aid to sleep because I was not getting any, especially when my reflux was bad. My week off is starting to be my worst week, it used to be my best. I get my counts checked every two weeks since I tanked in October. Counts have been pretty good. I can definitely see hair thinning, but not enough to make a noticable difference. I do wake up blowing my nose with blood in the tissue and had one nose bleed. It's my first line of treatment so I have noting to compare it too, but I have learned to work through it. I work in a school, so I was very anxious and nervous to even think about going to work because of the demands and germs. I haven't gotten sick yet (knock on wood). I used to workout alot prior to diagnosis, but the fatigue is sometimes a bear and I just don't feel like it
0 -
Hello All,
Well it appears the weight gain has been fluid retention. Gained 14 lbs, lost 8 over the weekend, then another 4 since yesterday. Ankles and legs still a bit swollen. I don't know if this retention is related to the Ibrance, but talk to the MO on Feb. 4th.
My energy level is down like many have said as well. I need to exercise, but my back, shoulders and hips really complain normally, so can't imagine what they'd do with exercise. I fell off the wagon yesterday and had a large coke. Had been doing so well before. It had been a couple months since I last had one. Oh well, today is another day.
Have a good day all.
0 -
JazzyJ how long have you been on Ibrance? Not on a bone strengthener?
0 -
Zills - Did 2 weeks of the 125mg, then 2 weeks of the 100 mg. Now I've just started my 3rd round of the 75 mg. Also, I get Xgeva every 3 months.
0 -
Just back from a trip to Utah. Felt very fatigued at altitude plus had slight bloody nose for a few days. Mdillard04 I am with you, left nostril is bleeding. Managed to walk in the snow provided I sat frequently. Hope it's normal SE? My 2nd round of Ibrance arrived via mail to start after my 7 day 'holiday' starting tomorrow. I've been getting blood tested each time I visit the onc. Mine said he does not go below 100mg - I'm on 125mg. Jazzy - enjoy your coke! I gave up mine in 2013 during taxotere. Does anyone know how long you wait between PET scans?
0 -
Hi All,
Just checking in. I'm in my 6th cycle and just love the reduced dosage to 100 mg (along with my Faslodex). I was encouraged to hear how it helped others so I jumped at the chance when my Onc offered it. The lower dosage and daily Pepcid as a preventative, has reduced the reflux issues that interrupted my sleep. Still bits and pieces of SE, mouth sores, stuffy nose (with some blood), anal irritation (use "Butt Paste", great stuff), low WBC, and low energy walking up a hill (huff and puff), BUT I'm not really fatigued. I am sleeping for at least 7+ hours and am having some vivid dreams. I feel "different" when I wake up in the morning and wave away the "chemo taste" in mouth with tooth paste. Right now I am able to take only one week off. Has anyone had two weeks off on the reduced dosage? Every time I start a new cycle my starting ANC is lower and lower. I don't think I'll get high enough after just one week off this time. My Onc likes to wait a whole week if things aren't right- easier to keep track of? Tumor markers down 2 points, below 70; not much but in the right direction.
Hope you easterners aren't too cold with all that snow. Looks quiet and beautiful when new. We're getting lots of needed rain here in California; finally a sunny warm day today.
0 -
lalady, my PET scans are generally every 3 months now.
0 -
I got my Ibrance for $10 copay with the program. I asked them to apply the assistance program and they did.
0 -
Just to understand this better - in the blood test I did not see the word ANC but it did show Neutr % so that should be it? It showed .5 - so doc took Dani off Ibr,for 1 wk. So Neeutr% count will show on the results? (besides all the others % is enough?)
And regarding the lower dosage, I still don't get it, so shw has now 125mg, Onco woul dhave to order 100 or 75? And then it could take awhile to get it no? Im a bit confused. She will go for BT on Monday, so let's see how it goes...
Thanks for your input
0 -
MomATT, % is something different -- at least on my report. What you're looking for is "Grans", or sometimes it's referred to as "Complete ANC." Granulocytes are one type of neutrophil -- the ones that fight infection. https://en.wikipedia.org/wiki/Neutrophil_granulocy...
The two charts that someone posted a few pages back clearly explain what constitutes the different grades of neutropenia and what is needed to stay on Ibrance.
It seems like you are trying to decipher something Dani's onc should be able to explain to you both. It's really quite simple if it's explained just the way it's outlined in those charts.
If her onc decides to lower her dose, she would get the new RX the same way she got her current one. I had asked that question once -- because it is so outrageously expensive -- What if my onc reduces the dose at some point? -- and I was told that they simply send you the new RX -- that it happens with oncology meds all the time.
0 -
Just to confirm what Deanna said, my dose was dropped twice, and the pharmacy had already shipped out the higher dosage to me for the month. The doctor's office just called the pharmacy with the new dosage, and the lower dosage was then shipped to me right away in addition to the one I had already received.
0 -
Ladies, thank you all for the advice. My tumor markers went up another 20% so my onc has called for scans. If the scans come back the same, add Ibrance. If much worse, I think we move on.
So I may be back, or maybe not, I certainly hope so.
0 -
Momallthetime--Here is a pic of my bloodwork. You can see Neutrophils (%) units but that is different than the further down Neut Absolute (K/mcL) units that Deanna has been explaining--the granulocytes. You can see what they consider the normal range in the brackets.
I hope this helps and as a retired teacher the urge to explain with a visual is just ingrained to resist.
0 -
Hi all,
First scan since diagnosis and starting Ibrance- stable on all except for small decrease on one!! Very happy! Doc originally said we would look for stability at first scan as medicine is slow to build up. I M on 75 mg. talked about increasing but numbers too low. Will need to stay on 75 mg for now. Feeling very grateful
0 -
That's wonderful, singlemom
0
