Ibrance (Palbociclib)
Comments
-
Candy, I had some unpleasantness with the first Neulasta shot so I decided to take Zyrtec the day before , day of and day after the next shots. Never had another problem!
You're going to do fine with it because whatever happens, it won't last long.
You're a Warrior Woman!
Love from PatGMc
0 -
Candy, I did not think neulasta was even recommended for low anc on CDK4,6 inhibitors, is there a way to get a quick second opinion on that- mine have been much lower than yours and nobody ever did anything but give it a week off
0 -
So, progression on I/L can come from developing resistance either to Ibrance or to Femara (or both, but either one is sufficient to do it)
There is a new mechanism reported for resistance to Femara or other AIs or Faslodex to develop, or someone might have it to begin with and therefore be endocrine-resistant from the start.
The new finding is that loss of the NF1 gene is one reason for endocrine-sensitivity. It was never known before that NF1 naturally suppresses the activity of the estrogen receptor; so when NF1 is lost then ER activity jumps up too high and cannot be efficiently blocked by Femara or Faslodex. This probably explains why people born with mutations in the NF1 (neurofibromatosis) gene are also pre-disposed to higher levels of breast cancer. The fix for this problem is to move to Faslodex together with a MEK inhibitor...
https://medicalxpress.com/news/2020-03-neurofibrom...
0 -
Thanks for this info Cure-ious it’s a whole new ball game.
0 -
Spookiesmom- I have seen commercials for Neulasta and the woman wearing the thing on her arm.
PatgMc- I do not have Zyrtec in my house. Script or over the counter? Did you use Neulasta with Ibrance?
Cure-ious- Thanks for chiming in. I know you are smart and always posting stuff wwwaaayy above my head. You seem scientific. I wondered about Neulasta use with CDK 4/6 inhibitors. I have read about holding next cycle for an additional week, but not about using Neulasta. I wonder if there are any harmful issues with using them together. My MO treats various cancer not just breast cancer, so she has experience with using Nuelasta with IV chemo use. So I think she sees the low counts and that is her go to treatment. I don't have anyone to get a second opinion since she is my only MO.
0 -
I never really took the Ibrance capsule with food. My stomach wasn't empty, but I didn't take it with a meal or anything. The only reason I thought food was preferable was for nausea. So does this mean I wasn't getting the full strength of the medicine?
0 -
Candy I did have neulasta twice while on ibrance. Ive been on faslodex zometa ibrance for 3 years.
I had the dose reduced to 100, but my Dr. said if I had the low counts 3 months in a row then I would need it. I also have taken off a week here and there for low numbers. I don’t remember which number went below the required amount (WBC ANC RBC) which required me to get it. But I just got the shot of neulasta and came back the next day and my counts went up enough so I didn’t get another shot. Both of the times it was one little vial of neulasta no patch thing. It has some bone discomfort but I think I took Tylenol. Pat suggested something on the page before. Maybe your dr. Can call it in to a local pharmacy. I did feel “better” within a day or so. Hope that’s helpful.Tanya
0 -
Candy- Neulasta is used for chemo, which kills off the immune cells, and it takes them weeks to be remade and mature to the forms that are useful, so neulasta is used to pound more out of the bone marrow so you are not immunosuppressed- with IBrance et al., the cells are all there, they just are arrested and not growing or maturing- when you stop the drug they quickly recover and you are not immunosuppressed. For all the trials they have done on CDK4,6 inhibitors, being prone to new infections was not a frequent side effect. So neulasta could be needed, but 800 just did not strike me as much of a reason to reach for it..
PS I am a just-retired professor, molecular genetics of cancer and HIV gene expression networks, so I can read the literature quickly about the genetics and pathways inhibited by drugs for cancer, but know nothing about the medical world, scans, tests, etc..
0 -
Candy, my onc told me from the start we wouldn't be using Neulasta with Ibrance as we had with Taxol/Carboplatin. I only had low white counts once during my first three years and we just delayed starting the cycle an extra week. He said there wasn't the danger of infection when white counts were lowered by Ibrance and I've heard others were told that as well. Most people just delay the cycle.
I would sure ask for an explanation on this.
Zyrtec is just an over-the-counter antihistamine and any other should do. I don't know why it works but my nurses started recommending it to everyone on Neulasta.
Wishing you the best!
ETA: Cure-ious was writing while I was and her explanation makes perfect sense.....as usual!
Love from PatGMc
0 -
Candy, great news on your report! So happy for you!
I am an oncology RN. I do not work with breast cancer patients, but do arrange for my IV chemo patients to get Neulasta or neupogen if their ANC takes a nosedive. We do not do this with our oral chemo patients - they just hold their med a few more days.
I would be sure that your onc gets a prior authorization before administering the shot (the on body device would not be indicated in your case) or you may end up footing the bill if your insurance denied the claim. The retail price of one Neulasta injection is about 7k.
Also, we recommend taking 10 mg Claritin prior to the injection to prevent any potential bone pain.
0 -
Candy, congrats on your good scan results! I also had my neutrophils go down to .8 last cycle so they had me take a second week off.
Cure-ious - I love to read your posts! You are so scientific, I am taking notes of many of your posts to ask my oncologist some questions! Thank you.
0 -
Has anyone experienced a rash on face with I/L? I have a rash getting worse all over my face. Little pumps just on face. Having hard time getting appt with dermatologist in a timely manner. Never had any problems before and getting very concerned. Mentioned to my Onc and because I did not get to see her in person this last time no help there.0
-
I love you guys. Such good explanations for the Ibrance/Neulasta question.
Tanya- Good to know that you have had Neulasta while on Ibrance. At least it was not harmful since you took it and did ok.
Cure-ious- You are smart !!!! You are such an asset to have here. Your posts are so interesting and I read your links you supply. But, some of the time, it is way above me. But I file them for future info. Keep it up !!!!
Leigh- Yeah I need that auth from the insurance. I cannot foot THAT bill.
My thoughts are, like Cure-ious said, the week off should allow the cells to rebound. Mine only rebound to 900-1000 each month (low end of normal is 1600). My "normal" is 900-1000. So now 800. My body is not rebounding very well. Should I take 2 weeks off each month? Maybe the doc is thinking give Neulasta this time to jump start the marrow to produce more cells. Give me a boost. What do you think Cure-ious? Am I making sense?
So..... My "week" of Ibrance starts on a Wednesday. Crazy I know. But that way I can get labs Mon or Tues, hear from onc, and start cycle on a Wednesday morning. I take my Ibrance with breakfast. So, Tuesday I had the lab. Didn't hear from onc on Tues, so Wednesday started cycle. Then Wednesday afternoon heard from onc. Had already started cycle. And this morning I took Ibrance because the plan, for now, is to continue Ibrance and give Neulasta. So I have had 2 doses of Ibrance with the ANC of 800. I say continue the Ibrance cycle, Neulasta shot or not. Thoughts?????
0 -
Hi Candy, mine were as low as 600 once I think, but always hovering in the 800-1000 range, my onc finally got tired of telling me to take a week off, sometimes two weeks, and re-scan so just last month finally did a dose reduction to the 100 mg level, and they are much higher and I have more energy, hoping this level is high enough
0 -
Hi Candi, is it possible to change your cycle to 2 weeks on\ 2 weeks off. Doesn't Micmel have that schedule, Karen also. I think they are both doing fine. I have also had to delay my cycle a couple of times due to low wbcs. I've read that papaya helps increase counts so I'm trying to drink papaya tea daily. Just had one test and it did help with the last test, one more coming up next week so we'll see.
Cure-ious, I also enjoy your posts. I read your links all the time and am learning so much. Cancer is so complicated.
0 -
Quick one to Candy about Zyrtec -- CVS, Walmart, Walgreens all have generic Zyrtec that is cheaper than regular and seems to work just as well -- I actually take it for environmental allergies. It's OTC -- no need for prescription.
0 -
Good morning!
Airlinegal - I use Metronidazole .75% for the face rash that arrives just as the Ibrance cycle ends. I asked my dermatologist about it and this is what she recommended. It works for me.
I also take Claritin around the time I'm getting the Xgeva and have less discomfort. (Innumerable bone mets at Dx.)
Simone - I've been on a 2 week on/2 week off cycle at 75 mg for a couple of years now. My counts don't recover to pre-treatment levels, but have been good enough to continue uninterrupted for a long time. The fatigue creeps up, but is less debilitating on this schedule, plus the skin rash and mouth sores are much better. I just finished cycle 54. (SOOO grateful for this medication.)
Candi - wonderful news about your scans!
Curious - Thank you! As always you share great information we can use.
0 -
Update on the Ibrance/ Neulasta saga.....
Got a call from MO nurse. Awaiting insurance approval. Yes, they will wait for insurance before giving so I am not stuck with bill. But... looking at Neupogen instead of Neulasta and would be given 2 shots 24 hours apart. So maybe Friday and Saturday (Saturday at hospital infusion center since office closed). And, more good news (not), my MO is off duty today and tomorrow. Back in office Monday. So I ask nurse to put note on MO's desk that I want to ask her why Neupogen this time versus holding Ibrance a week. What are we going to do in the future? Off 2 weeks versus 1 week, on 2/off 2, cannot lower dose as I am on 75mg now. Why Neupogen now??
I did ask nurse if another provider was available covering for my MO. Yes. But they will not override my MO's order without a REALLY good reason. So Cure-ious the second opinion thing is not happening. This is my MO and this is what she ordered for reasons I don't know yet.
And I got the "Don't question your doctor" attitude when I questioned the use of the Neupogen with Ibrance.
I want to have the knowledge, but don't like how I am treated when I show that I have some knowledge.
0 -
Candy, so sorry you have to face this. I too am not very assertive and have not yet questioned my MO. But it is your body. When do you see your MO next? Be honest and tell her your concerns. I am learning to just be honest, and yes, I have to write down the wording of my questions because I can't think straight when in the office. My first appt since word of my progression is this Wednesday and this will be the first time (in four years) that I will be with my MO without my DH who is not allowed in the hospital with me this time. I plan on being prepared! I will pray that God will make your paths straight and open up the communication line for you. I am thankful I can email my MO through the portal whenever needed. It sometimes takes a couple of day for a response but I like it as I can work on the wording. She doesn't seem to mind and a nurse reads it first and responds faster if she can. We pay a premium for healthcare and deserve communication for our care.
0 -
IntoLight- I just had MO virtual appt on Tuesday morning. Then Tuesday afternoon I had labs. MO saw lab results Wednesday and told nurse to call me with Neupogen order Wednesday afternoon. So I didn't have chance to discuss Neupogen plan with her. I plan on telling her I am not questioning her plans, just that I want to know the "why" behind her decisions. I am a "why" person. And that I am very active in my care and want to know the plan.
Into Light- I will pray for your appt next Wednesday. Please post, or PM me, about how it goes. Progression appt is VERY important. I have not had progression yet. I worry how my MO will be at that time--approachable or not.
0 -
Candy, my MO just called me unexpectedly and discussed the fact that the radiologist was not optimistic that he could reach a biopsy of my liver safely. Apparently, the tumors are not in a good place. However, he did say it was possible to try and they could always stop if they felt it was unsafe. The decision is mine. She said it would not change her immediate decision to switch to Xeloda based on my other markers and I could always try a biopsy at the next progression. or whenever she decides it is necessary. I was also given the option to see her in person next Wednesday if I choose or go virtual. So, I would love any input from anyone here on the biopsy for my decision on Wednesday, but I told her I do want to go in for an in-person meeting on Wednesday. I will prepare ahead questions like the possibility of a liquid biopsy, etc. Anything else? Thanks everyone. You are a treasure! Chris
0 -
IntoLight,
I was just going to say -- liquid biopsy -- but I see that you have that on your list already. The one that was recently suggested to me is Guardant -- but I don't know if it will be covered by insurance, so that's something important to check. It's pretty expensive if now. If your tumors cannot be reached by traditional biopsy, though, that may be a reason that insurance might approve? I don't know.
0 -
BevJen, good question. My original biopsy was done on my lymph node under my arm so we had that data, but my onc did not do a liver biopsy at that time. Since Ibrance took care of the liver issues for four years also, we never had one done. I have never had insurance issues since it is an HMO and everything is done in house, but if liquid biopsy is not in their treatments, I have no idea what would happen if I request it. My onc is very in-tune to the latest options so we shall see...
0 -
Good evening ladies
Someone had posted a few months back about problems with their jaw related to SEs of treatment. Similar to necrosis of the bone. I started having pain in the hinge of my left jaw only. I called and spoke with nurse and she’ll tell the dr and get back to me. I was just wondering what the treatment is for this?
Tanya
0 -
Hi Tanya, from what I understand, the jaw necrosis can happen if you have an invasive type oral surgery - like a tooth removal. My oncologist said that cleanings and root canals were OK. Hopefully you'll hear back soon from your doctor. It's supposed to be rare, but they have to list it in the possible side effects.
0 -
IntoLight- I am thinking liquid biopsy too. I have read about them here though I don't know much about them. If the radiologist thinks they cannot get to the liver met safely, and the treatment plan would be the same, I don't know if I would consent to the regular biopsy due to safety concerns. I did have a regular liver biopsy on mine but it was easy to get to.
0 -
Hi Tanya,
That was probably me. I have medically induced necrosis of the jaw. They stage it and if caught early they prescribe a mouth wash to use twice a day to kill germs. They'll do surgery if it's a late stage. The dead bone will eventually work it's way out with new skin underneath. it's a wait and see what happens approach. Mine does not hurt right now but some people have quite a bit of pain with it.
I stopped xgeva. I get cleanings every 3 months, instead of 6. No major dental work.
0 -
intothelight- I recently had a bone biopsy at kaiser. ( not a bone marrow biopsy) they did it with flouoscopy on a progressed bone- they have a “new” way of decalcifying the bone that is more accurate. I was in twilight and it was done in an OR. They checked this sample for mutations before I started the Xeloda.
0 -
Thanks NkB. I too am with Kaiser so I will ask if this is an option. My onc discussed the fact my new bone progressions are in dangerous places for a biopsy--the sternum and spine, or she would have done those.
0 -
intothelight- the first radiologist who described the procedure told me L4, but the one who did it chose the front of my hip- easier to get to. He told me “there were lots of options”! Thanks. I had very little problems - just a small bruise. I hope that they can find a good place to biopsy.
0
