Ibrance (Palbociclib)
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I just left my monthly ONC appt. Last week of cycle 4, she told me I cannot get my scans this month cause all the routine scans are shut down because of coronavirus. Not sure when I can get scans to see if Ibrance is working...She said if things open up next month they will order the Pet Scan. Got my Falsodex shots and blood work. They are only letting a few people in at a time. Weird Times
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Tina2 - SEs were worse for me during the first couple of cycles. Just finished cycle 7 today and start the 7 days off tomorrow. Fatigue, mouth sores, very irritated nasal (sometimes blood), farts, hair loss, blood work. Low blood counts seem to have leveled off, but are still low. Hair loss continues, maybe I am just getting used to it. Fatigue is not as bad, do not get as many mouth sores. Do not fart as much. Nasal still irritated, but not as much. Get my blood checked next week and am supposed to schedule a CT. I do not know if anything really helps with SEs. Did salt water gargles if mouth sores cropped up, maybe I should do the rinses daily as a preventative? Try to stay hydrated and eat healthy. Biotin might help with nails, not sure it does much for hair.
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Has anyone had there scans postponed because of the coronavirus? This would of been my 1st scan after treatments started so I am concerned if Meds are doing anything or if there is any change or progression..
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Imagine -- My wife showed some small increases in the size of her tumors in a scan in February. Her MO isn't convinced there's progression though. She was scheduled to have another scan this month, but that's now being delayed as a result of COVID-19. I'm nervous about the delay, but my wife is comfortable with it so what do I know, she's the patient. Good luck.
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Imagine,
I had requested a nuclear bone scan because my last one was May 2019. I was supposed to have it earlier in March, and I pulled the plug on it myself pretty quickly once all hell broke loose. But I had just had, within the month before, a CT and an MRI scan, so I felt comfortable putting it off.
I think you should find out more about the precautions at your imaging center. If it's in a hospital that's open to coronavirus patients, I might see if you can do it elsewhere that is a bit more secure and smaller. That was one of the reasons that I postponed by bone scan -- it would have required me to go outside of the cancer center building at Hopkins and go into the main hospital. Plus, I would have had to stick around for three house between the nuclear injection and the actual scan, and there was NO way I was up for that.
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I’m getting a ct scan done tomorrow. I’m a little nervous about it but it too is my first scan since I started on the clinical trial and my need to know the medication is working is greater then my concern for covid-19
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I was scheduled for scans 4/13, the ONC nurse called and said my doc. said if I'd rather cancel them till later, that was fine with him. I chose to go.
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Im thinking about switching my I/L from taking it in the mornings to the evenings, so that I dont have to necessarily eat breakfast in the morning. I've never been a huge breakfast eater and eating that early tends to mean I start snacking early too. Ive put on a little bit of weight, and this would help get that under control.
When is the best day to switch - I figured it was just before starting the new cycle as the letrozole isn't going to stop working for the extra 8 hours while I switch over.
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SondraF- I take my I/L with dinner as it was the most stable meal to take my meds with. I don’t think I suffer any SE due to time of day for dosing.
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Does the letrozole need to be taken with food? Once the Ibrance switches over from being capsules, which is supposed to be soon, you won't have to take the Ibrance with food anymore.
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I don't think Ibrance necessarily needs to be taken WITH Letrozole. I do take both at the same time (breakfast for me). And Sondra, I think changing with the new cycle would be a good idea.
Snooky- You mentioned your scan on the 13th. Any results yet?? Praying they are good. I have my next scan due in May (pending insurance approval so not scheduled yet). I wonder if it will be cancelled as my local rural hospital has had COVID patients in house. I hope not. If given the choice to scan or not, I will choose to scan. Sounds like this virus issue is going to be around for over a year while we wait on a vaccine or a treatment to be found. I want to continue my cancer surveillance every 3 months and not let the cancer take a foothold.
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Imagine, I finally looked back at my Pet scan dates. I knew I went more than three months on the first one but couldn't remember how much. I actually went six months before my first Pet scan after starting Ibrance. I think that three months is not long enough to really see Ibrance working. Going longer is not a bad thing, at least to me. If they see something inconclusive at three months, you'd just worry more. I take the attitude, no news is good news. I asked my nurse when I was there on April 8 if the hospital was doing Pet scans. She said yes but no one mentioned that I am due for one. My last one was Jan. 3. I usually go four months between Pets. I am supposed to see MO next on May 6. I'm going to wait and see if he mentions it. If not, I'll go merrily along not having one. They did move the Pet scan mobile trailer away from the hospital building and close to the office building where my MO is. (Basically across the rather large parking lot.) The front door of the hospital is actually all closed off. You can only enter through the ER. All out-patient services are not operating.
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the ONC told me they are canceling all Pet CT scans unless it is an emergency. They only have one mobile Pet Ct Scanning unit in this area that travels to hospitals and private offices. I just hope they can schedule in May as it was be 5th month on Ibrance and I really want to know how it is going, She did say that it usually takes longer than the normal 3-4 months on TX to see how you are responding
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Hello,
My Mother in Law has been diagnosed with metastatic breast cancer. She has been prescribed Ibrance and anastrozole .Iam her sole caregiver .I need the help of you ladies .Ive seen Ibrance is a chemo drug .Can y'all please guide me what precautions I have to take as a care giver .Thanks
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Rubyla, first, I applaud you as the caregiver for reaching out. Your care and concern for your Mother in Law is special. I will not give you everything you need to know here, but will suggest you go back and read through some of the postings in this thread, then ask questions as they come up. Someone will answer you and no question is silly. You will probably find this drug is not as caustic as you fear, and I will say do not fear the drug as a caregiver. I have found its side effects to be minimal but its effectiveness better than I expected. Your MOL can probably look forward to some minor gut problems, increased fatigue, perhaps mouth sores, thinning hair, and either diarrhea or constipation. It affects everyone differently and changes a bit as she progresses which is why we here call it the "Ibrance dance." Please know we are here to help you and your MOL with as much support as we can provide. I will pray the drug works well for her. I have been on it for almost four years and am still doing well so a good result is very possible.
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Thanks dear for reaching out and sending good wishes.It really means a lot.
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Hi Rubyia,
I will add on to IntoLight's comments; neither the Anastrazole nor the Ibrance are considered to be chemo, they are "targeted drugs" that act on specific proteins and so do not have the ability to kill cells indiscriminately, or be of any danger to you as a caregiver. These drugs inhibit estrogen and CDK4,6 kinases, respectively, and in my case I had fatigue at the beginning but by month two or three my body got used to the drugs and the fatigue lessened a lot. Other than that, my hair got thinner and that's about it. It will probably take at least three months to see if the drugs are working, but if they are working, then she may well respond for at least 2-3 years, and actually half of the patients go longer than that before the cancer starts growing again, with minimal or even no discernable side effects. Once the shock wears off and you are comfortable that its working, hopefully you both can quickly get back your normal life!
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Rubyla, welcome to Breastcancer.org! We're sorry for your mother in law diagnosis, but glad that you found us and reached out to our members! This forum is for Stage IV members only, but there are a number of forums where you may want to post too, see here:
Stage IV/Metastatic Breast Cancer, Open to All To Contribute
For Family & Caregivers of Loved Ones With a STAGE IV Diagnosis
- For Arimidex (Anastrozole) users, new, past, and ongoing
- We hope this helps! Sending you and your Mother in Law best wishes.
- The Mods
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Rubyla, Hi there! I also wanted to add that the "Search" feature is super helpful! Know that anything your mother-in-law experiences - physically, emotionally, mentally, whatever - has all been experienced before, and everyone here is super helpful with recommendations and support. I'm 33 months in (Ibrance and Letrozole), and doing great. I've been very fortunate on this drug; NED after six months, and no symptoms to speak of right now! I wish the same for your mother-in-law.
PS - At the beginning, my Ibrance came in a yellow "CHEMOTHERAPY" bag, with all kinds of warnings on it, wrapped in bubble wrap in a box, delivered with signature required. Now it comes in an envelope (no padding), and the UPS driver tosses it at my door, LOL. What changed? I think they've learned it's not quite as toxic as they had feared!!
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Rubyla, please disregard the above post by the moderators. They obviously didn't read your post carefully. You said your MIL is metastatic (stage IV) so you have every right to post here. Welcome to our thread. I/L has been a great combo for me and I hope it will be for her, too.
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Rubyla -- Just echoing what jacee49 said about you posting in the Ibrance thread. My wife has MBC in her lungs and these women have welcomed me here (thankfully, because I'd be a REAL nervous wreck without them). There are several other husbands and caregivers of other MBC patients who participate here, too. Welcome and good luck as you and your MIL traverse this journey!
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Mike, I don't think the mods were referring to Rubyla being a caregiver. Whoever posted that was really confused because the list of alternative threads she could post to included this very thread. I may PM the mods so they can correct their error.
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Rubyla - welcome and what a blessing you are for your MIL. I am only on the last week of my 3rd cycle of Ibrance so I am just in the early stages of use. I have been confused by whether Ibrance is or isn't a chemotherapy drug. My MO considers it a chemo drug and when I go to medical sites, they refer to it as a non conventional chemotherapy...whatever that means. I am on Faslodex instead of an aromatase inhibitor since I went through all of those back when I went through breast cancer with my first occurance as a stage IIB. I noticed like Ciaci that at first my Ibrance bottle was bubble wrapped and in a in a thick zip lock bag inside the mailer and now it is just the bottle in the mailer. One of the things that I remember reading in the paperwork that came with it was that you need to wash your hands before and after handling the Ibrance capsule. I think that would probably be a good idea.
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Thanks Ladies for all the advice.I know Iam at a safe place now .I have two kids and I read that Ibrance being an oral chemotherapy med I have to keep a separate toilet and take care about herbody fluids .Do I need to follow all this while my mother in law is on IBrance? Or I have to treat IBrance as a regular medicine and let her live her normal life as she was before this medicine..Thanks again ladies.You all are so helful
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Rubyla- Welcome. I have been on Ibrance/Letrozole for 2 1/2 years. Mine too came in a chemo bag at first, now it does not. But my MO still calls it my "chemo". "When is your chemo pill due to be restarted" she will say. As the caregiver, I would think wash hands after touching the pills. Otherwise not much to be concerned about as the caregiver. I live alone, so I am the only one around my meds. Any questions you have from your MIL, just post them. Any of us on here can help you.
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Rubyla - I was never told that I needed to keep a separate toilet or anything about watching for body fluids and I just looked in my Ibrance literature that Pfizer sent me and I can't find it there either. My advice is to call Pfizer and ask them directly at their Ibrance assistance number of 1-844-9-IBRANCE . I take my pill in the morning with breakfast and like I said before, I wash my hands before and after handling the Ibrance. I also make sure to brush my teeth before I kiss my husband goodbye on his way to work just to make sure I don't have any residue that could harm him but that may not be necessary.
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We received further good news today about my wife's hemoglobin levels. They had fallen into the low 60's in January, and that's dangerously low. She received two blood transfusions back then after it rose a little from the transfusion, then fell again. They started to climb in March and they are now up to 114. She takes an iron supplement daily and we eat liver twice a week. We will never know what caused it to fall so hard in November, perhaps an internal bleed. But her hemoglobin and iron stores were extremely low, and she is now on the mend. Near normal hemoglobin makes a big difference in her energy levels.
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Great news Husband11
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Dear Husband, I'm here in Memphis celebrating your wife's hemoglobin levels bringing her renewed energy and I always celebrate your love for her!
Rubyla, how blessed your MIL is to have you looking out for her. As for Ibrance being called chemo, my cancer policy has it, the aromatase inhibitors, Faslodex and XGeva all classified as that. As long as they pay me they can call it anything they like! The advice I would add for your MIL is to eat natural yogurt to help prevent the mouth sores that sometimes show up, especially in the early months.
Today I had the follow-up brain MRI to make sure the "French Foreign Lesion" was obliterated. I'm expecting good things from that CyberKnife adventure!
I start the second cycle of my second phase of Ibrance tonight. Since I had 3 years on the first go round I expect to get that much or more on this one! Call me Pollyanna but I'm a believer in giving this magic drug a second chance.
God bless all of you as the pandemic rolls on. May you and your people stay well.
Love from PatGMc
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I just call it chemo, no matter what the correct term is. Makes it easier for others to understand why I may not be feeling great.
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