Ibrance (Palbociclib)
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my doctor said not to stop Letrozole. Save travels
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Thanks animalcracker and Ella. That is what I thought. I will still put in a call in the a.m.to my oncol. though just to be on the save side.
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Naturegirl - Yes, you continue taking letrozole daily. Here's a link that explains it from the Ibrance website in case you can't reach your onc before you leave.
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Naturegirl - Yes, please take letrozale daily (same regime as Arimidex for some of us). It's the Ibrance that is 21 days on, 7 days off. I thought you were moving to another medication? So glad to see your post tonight. Thinking kind thoughts for you on the loss of your mother. Enjoy your 4 day travels. Please stay in touch here.
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Naturegirl, the Letrazole is taken every day, no break. Have a nice trip!
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Yes you continue the Letrozole.
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Thanks y'all! I'll definitely take my Letrozole bottle with me. No need to call my oncol. then.
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Hi Romansma,
I just began Ibrance treatment 2 weeks ago. So far, energy is right up there. A little bit of soft stools came and went, then one night about 5am I awoke with aching in my legs and hips, a little numbing in my left arm. Once I walked around, the problem was not noticeable. Today, day 16, I woke with a wee cankor sore developed in the wall of my mouth, a bit of dryness in the back of mouth. Now, that I'm up and about, I'm fine. (after brushing teeth I've routinely used Listerine Total Care (purple) which seems to keep problems like this at bay).
I'm Stage IV with mets to Sternum. Using Letrozole along with Ibrance to hit Estrogen. I have a shot of Xgeva every 6 weeks to help heal bone tissue. I have not had previous chemo for BC, nor rads. 28 years ago I had a head tumor which was treated with Proton Beam treatment and this squashed any return. However, it was a radical treatment and no other rads can be delivered to the area above my neck.
I am praying this Ibrance & Letrozole cocktail will do the trick to rid cancer in left breast and I can get radiation to kill cancer in sternum. One never knows HOW LONG your treatment will need to go on. I am hoping it won't take a 1/2 year, though it could go over a year....
Think positive, laugh as much as you can, understand your body, the illness, keep dear friends and family near, hug your pet, build a garden, dance, travel (when you can).
Best,
Lauren
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Hi Faith,
Yes, that's right...the drugs need to do their thing. We are all here together to give support and hope and creative ideas on how to deal with side effects. I am on Ibrance/Letrozle (1st cycle, going on week 3). My energy is still good. A few awakenings at 5am, but once I'm up and about, I'm fine.
Mouth is starting to give grief with dryness, cankor sore, but using purple Listerine after brushing helps. Also, I have small children's toothbrushes that I can throw out often enough to keep nasties out of mouth. Also, rinse brushes with peroxide. I have bacteria wipes with me everywhere. Especially when visiting hospital or grocery store or restaurants, etc. I like that someone mentioned taking Ibrance with whipped cream to help it go down her dry throat! In evenings, I like Twinning's Lemon Ginger tea. Tastes lovely, Ginger for the tummy, too. Could help with mouth probs.
Best,
Lauren
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Dear Zarovka,
You are a fighter. I just began 1st cycle of Ibrance/Letrozole a little over 2 weeks ago. Keeping sharp on SE though a few have come by slightly, not terribly. Energy is fine, so far, though I hear lots of issues with fatigue may lurk ahead. I've not had chemo or rads for BC in the past. My tumor has mets to sternum and that is the focus of future rads. Hoping results of a few months of this cocktail with hightail the cancer in breast and in blood (sternum, too).
I am concerned with ways to sidetrack fatigue or know when white platelets are getting too low. I am not close to the hospital where all my doctors are. Has anyone set up an emergency doctor close by their home in case of real threats?
Thanks,
Lauren
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Dear cml-brower,
You are amazing! Having been through all of that rough stuff and now going forward with the Ibrance cocktail! This treatment has just come out of trials and has found a progression rate of over 2x the other meds being used for BC HR+ (post menopausal only). I hope this will be your torch.
Keep us updated on progress and SEs you discover. We are all in a discovery process like no other. Strength and blessings to you!
Lauren
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Hi Lauren -
My primary oncologist is 2 hours away and hard to reach. I have a local doctor that will write me orders for a CBC panel if I am worried. I have permission to make my own call on how long to stay on Palbo and how long to stay off it based on side effects and other health issues that come up. You have to be strong enough to fight off a cold or you can get pneumonia. My oncologist wants me off it if my neutrophils or wbc are even mildly low and I am sick. However, when I was recently sick during my third week, my immune system tested with flying colors.
The palbo was not interfering with the fight against the cold. I stayed on palbo and beat the cold in about the same time everyone else around me did. That said it was awful to deal with the side effects on top of serious cold systems. Once I am settled in this protocol (I've only completed 3 cycles), I don't think I will be a hero again. My onc feels that (brief) breaks from palbo to manage your overall health are just fine.
The current thinking is that Palbociclib is something that you take until it stops working, which could be years and years.. I've heard of people who were in the first trials who have been on it for 6 years. Except for the part about being around for 6 years, I'm not thrilled with this plan. I discussed possibly going off it in the future, assuming all goes as well as I hope, with my oncologist just this week.
She said there is no evidence that palbociclib stops being necessary after a certain point. The recommendation is to stay on it as long as you are stable or improving. However, it's a new drug. If it gets a lot of us to long term stability or NED after a few years, as we hope, I'm sure a lot of people will try to go off it. There should be more information in the future as to whether you can go off it at some point.
But I suspect that most of my side effects are not from Palbo. I think they come from the letrozol, or more specifically trying to live with non-detectable levels of estrogen. Unfortunately, even my maverick, convention bucking complementary oncologist wants my estrogen levels suppressed for a long time. I've heard of many stage I breast cancer folks declining letrozol and effectively controlling any residual cancer with healthy lifestyle and maybe some cannabis oil. I want that to be me some day, but none of my experts are blessing that vision.
I have biopsy proven metastasis to my liver, but my last PET scan showed possible mets to sternum. Neither my primary oncologist or my second opinion want to do anything about it but monitor it with imaging. Not even a biopsy. There is a significant possibility that it is false positive. Secondary Onc said that you don't do radiation unless you are trying to manage pain. She also said that the medications for bone mets are starting to show problems in long term survivors. I am very curious why you are being treated more aggressively. Is the metastasis to your sternum extensive? painful?
If you fill out the diagnosis and treatment information AND make it public (the later is not automatic), it avoids having to repeat basic information about our experience.
>Z<
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Z,
Your information and perspective are interesting. Would you expand on your comment about long term treatment problems for bone mets? I have bone mets only (many of them). Ibrance/letrozole are my first treatments after being reclassified from HER2+ to HER2-
Thanks
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Hi Ladies - I don't post much but I look on this board every day. Such a great place for advice and support. Had my bone scan and CT scan this week and results are stable. I have been on Femara/Ibrance for almost a year. Tumor marker CA 15-3 is down to 33, at the highest it was 44. I have mets to my bones and lungs. Overall I've been very pleased with my results on this drug combo and the side effects for me have been minimal and tolerable. I'm 39 and work full time and do most everything that I did before being diagnosed with mets. Continued prayers for all of you! "We conquer by continuing!"
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Started round 5 today. Onc won't drop me due to fatigue. Crossing fingers it gets better.
Anyone have jaw pain? Had my regular cleaning. No issues. Not sure if I've been clenching jaw but it is very sore. Pain killers not helping. Had a cold last week. Any ideas
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Zimmerwoman,
Wonderful to hear you are doing so well on this protocol (Femara/Ibrance) and it's been almost a year! So many of us are still in the early cycles so it is great to hear from the ladies with a year under their belt. I'm in my 5th cycle and doing well in terms of SEs. I have my first scans since being on this protocol on 5/17 so I'm hoping to see stable results. I will report back. Fingers crossed.
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Zimmer - So glad to hear your good news!
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I am two weeks into cycle 7and my ANC tanked.. so I have to take a week off. I did great on 125 until cycle 5, and made it on 100mg through cycle 6- MO said radiation late last year is probably the reason why bone marrow is struggling. Ibrance/letrozole has been working for me, bones are healing... I hope I am going to be able to stay on it. Maybe will lower to the next dose. Blood work again next week. I feel ok, maybe a tab bit tired today. Just so disappointed.
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LovesM don't be discouraged. Why would they change the dosage so fast. Maybe you could try a few more weeks at the same strength. I know Dani's #s are always fluctuating. Could you tell me what "tanked" means to you? Below 0.5? What about Neupogen to help you keep going. I don't hear much of ladies here, getting the Neupogen when the count is low? Why is that? Onco does not wanna give it often, but it's an option. Hope to hear better news from you soon!! Special thanks for all your support.
AnimCr - fingers crossed!
ZimmerW so happy for you. It makes everyone here be hopeful too.
Zills my daughter just had jaw pain and earache and partial face numbness, it's getting better...Doc gave also low dose Decadron.
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LM I know you're disappointed. It's worse when you don't feel good. Hope they come up quickly.
Mom how long did Dani's pain last? Did they think it was the Ibrance?
My mo won't give nuepogen shot for oral chemo, only iv. My old mo never talked about my counts in oral chemo so guess it wasn't a problem. Maybe I'll ask the nurse about the difference.
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Zills Since the 18th was the worst, the first week was not good, by the 2nd week it got a bit better and slowly it has gotten better. She had just gone to the dentist and he had done some type of Xray all around the Mandibular, so he double checked it when she called with this problem, but he did not see a cause for the pain in that imaging. She also did an MRI to check the facial muscles, but it did not show there either. I looked up SE of Ibrance but you know, they just say you could have this and that, to cover themselves, but I don't think they have sufficient evidence that it could actually BE Ibrance. So...hope you feel better soon.
Laureng Onco and Rad also don't like to radiate unless it's extremely painful. They say it weaken the bones. And, the Sternum, you really have to be careful not to burn that area, it could be quite uncomfortable after. So I would say, a watchful eye at this point may be a reasonable approach for you.(just my humble opinion) Dani also has in the sternum they did not wanna do anything, waiting for the meds to take effect!
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zarovka,
Thanks for your informative spin on these crazy drugs. A lot of what you say will be helpful to what I can expect.
Hey, I figured out how to put my stats on my profile... The aggressiveness toward my tumor is that it is a BC IDC that went unnoticed for several years after a bilateral mastectomy. A year later I went for inserts. However, from the get-go, there was a little sunken, wrinkled area at the end of my scar (at 9'oclock) on my left breast. I was a borderline Stage 2 and it was not required I have rads or Chemo. I was told I could take Tamoxifen, but it did not feel right to me when I took it.
For breast inserts I had to go through the inflation first, then surgery again for the final inserts. The idiot plastic surgeon said he would cut out the wrinkly part of my scar when he put in inserts. It never went away and there was no mention of "gee, let's do a biopsy." It was assumed, since I had a bilateral mastectomy (my right breast was fine, I just wanted balance and NOT to have to return in a year....LOL) there were no problems and this was likely the result of a stitch left behind during the mastectomy. After an attempt on the part of the PS to rid my chest of this weird little scar wrinkle, it returned again. My PS moved out of state and I moved to another state. I got worried when the scar began to harden, then discolor.
Best part of this is I moved to the Bay Area of SF this February and contacted a PS at Stanford Hospital who DID say "first let's get a biopsy on this..." which is how I found out I was Stage IV with a 3-4 cm invasive tumor, which has now mets to my sternum. Not sure about nodes behind it. A lot to take in in one month's time. Not only that, but a tumor showed in my head (turned out NOT to be related to BC but a result of a mass amount of radiation I had at Harvard in 1988 for a skull base tumor. The tumor is not aggressive, benign and nothing I have to worry about for a long time.
The plan is to use this Ibrance/Letrozole/Xgeva cocktail to suffer the BC tumor (monitor its size, shrinking and softening it) then surgery will become imminent to remove my breast insert and tumor. A few weeks later they will treat me with 5 week chest radiation therapy for the sternum. I may assume the cocktail post rads.
Since I am just beginning this systemic treatment, there is a lot that is floating about by way of monitoring and how my body will react. I am a fit 58 year old, who follows a healthy diet, strong positive mental state (backed by friends and family--having gone through a rare head cancer when I was 21 and again when I was 30 and I have many tools I used in my past, to rid myself of cancer, are useful to me presently).
No, there is no pain in my sternum and I don't believe it is massive. I have complete trust in my oncologist and all doctors discussing my case. I had no idea that I could be on these meds for years, but did know that it might take a while to get effects. Chemo is the last resort.
Question: Was your sternum mets caused by the closeness to your original BC?
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Momatt- I have to have blood tested in a week. She said this is common from Ibrance because of the radiation I had at the end of last year- Bone marrow takes a big hit. I knew I was in trouble when I was only one week into it and I was already at 2.0- last week- neutro's were still good, but I don't know what ANC was today- I had the blood work done locally and faxed to her. I know white cell was 1.5- My Primary doctor freaked out and called me and said call your doctor asap- I just faxed her your blood work and it is not very good. Actually, I am a not feeling that bad, a bit tired, that I can handle. How is Dani doing? Did she start added drugs?
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Hi Joellen,
You are right, not too many ER+/PR-/Her2- (Luminal
subtypes post here. However, the Ibrance/Femara combo is working well for me, with no side effects, since last August...0 -
LM, what was your count for Neutrophil, ABS or ANC ? My wife's was 0.5 two Thursdays back and Onc told her to hold off after only two weeks on Ibrance. This Thursday it dropped further to 0.36 while being off Ibrance for 1 week. Onc told her to hold off further. She had some good amount of radiation to her pelvis and I guess it is taking a long time to recover. According to Onc, ANC is what matters and not WBC so much.
I am getting nervous.
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Kaption -
I am not an expert in bone mets nor am I working on becoming one. I have chosen to be in denial about the (mildly!) hypermetabolic activity in my sternum in my last pet scan that may or may not be cancer. I can't process more than I have on my plate already (breast, lymph and liver!).
However, both oncs said that their patients who are on Zometa for over a year have been presenting with jaw and teeth issues. One of them said that can be managed by not staying on it for a long time. Neither was specific about issues with Xgeva.
My onc are probably just being appropriately conservative in prescribing any new drug for me. I am responding to the regime I am on. They both believe that Pablo/letrozol could treat the bone met I may or may not have, so why not try it until it doesn't work. Why add a new drug when they all have some kind of side effect.
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@ LaurenG -
I had a clean bone scan in January and the CT scan in January saw nothing in the sternum. If I have bone mets to my sternum, they are small. I am hoping that the "sternum met" is a pet scan artifact. IOW I am hoping my "met" was "caused" by the pet scan.
If it is a met, it is probably breast cancer. But it is not super close to the primary tumor. Nobody seems in hurry to biopsy it, and I'm not arguing with that.
I am sorry you are going through so much in such a short time. The first three months were overwhelming for me and I have a pretty plain vanilla case of stage IV ER+PR HER2-. I am through the worst, but I do feel like I can't take even one more thing.
Your experience and support shows in your clear and pragmatic posts. You know how to deal with this. Keep it up, keep going and you're going to do great. Let us know how it goes.
>Z<
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Thanks, Z. I am on Xgeva- have been for 2 years. I started with shots every 6 weeks, then once a month this past year. Now will be every 3 months. Yes, I've heard of the jaw issues. Just hope to stay away from major dental work!
Thanks.
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Let- She said ANC was low and I was so upset I think she said 0.6. Ibrance continues to work week off. Bone marrow suppression takes a beating from radiation. I was able to tolerate 125 for 5 cycles. 100 for 1 cycle and then the next cycle on 100 I only got 2 weeks. I bet I have to be lowered again. I will keep you posted.0
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LovesMaltese -
I've been able to tolerate 125mg for 3 cycles, starting my fourth. But my oncologist keeps prepping me for a drop in dosage. This drug is not like other chemo drugs. It is a marathon, and a very long one, we hope. Not a chemo sprint where you push your body to the absolute limit for a short time. In her opinion, you can go off it for two weeks instead of one. Stay on for two weeks instead of three. She adjusts dosing before lowering dosage. From reading the thread seems like it is more typical to lower the dosage and many people are doing well on the lower dosages.
She is also very big on exercise to manage the side effects and to keep your overall health up (including WBC counts and neutrophils). Tired - keep active! Joints hurt - keep active! WBC down - keep active! She would rather that I be active than stay on the higher dose.
In general, I am a firm believer in functional medicine. You have to stay healthy to support the work of these drugs. It's taking longer than a week for your bone marrow to bounce back given what you've been through. I am wondering if your onc would consider staying off for two weeks and seeing where CBC panel is.
>Z<
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