Ibrance (Palbociclib)
Comments
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Gumdoctor, I'm glad you're looking out for yourself!
Do you think she is still with him? Because I obviously have too much time on my hands I found her on Facebook....Shauna (unless I've already forgotten!) There are pictures with the children and references to having been in jail so I'm guessing this is not a new significant other. I'll never understand why women stay especially when they've been close to dead as she was. My mother never let my father back in the house after the knife episode though he certainly tried. She got a divorce and then he died within 3 or 4 years, the great relief of our lives.
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Pat - I just have no idea. I read through her Facebk posts today and there are many fewer than there were months ago. I was under the impression they were broken up and he had custody since she went to prison and was on parole.
I am very sorry you had this kind of thing in your past. Part of what made you so strong, no doubt.
Gumdoctor
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I get excited about these things whichever type MBC they're focused on:
https://www.bloomberg.com/news/articles/2019-06-11...
Love from PatGMc
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Gumdoctor, I had a warrior woman of a mother and never doubted she would take care of us and protect us. We laughed and sang show tunes to get through. I only had to protect her that one time and that's what made her decide enough was enough! Life was and is good. I made up my mind to marry a really good man and after fifty years, I think I'm going to keep him. (He laughs but no show tunes. Just rock 'n' roll.)
Love from PatGMc
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Has anyone been tested for NTRK? Japan also just approved a similar drug.
https://www.nbc12.com/2018/11/28/fda-approves-grou...
The Japanese info:
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Hi everyone
I am pretty sure I already asked this but cant seem to find it in my posts. Do any of your docs use the primary breast mass to determine whether treatment is working or not? My wife gets a breast sonogram every three months. Yesterday we went in for her check up and the mass is exactly of the same size as it was at diagnosis 1 year and 3 months ago, the only thing thats changed is her armpit lymph nodes are now clear whereas they were swollen back then. Has this happened to any of you, to have the mass staying the exact same for that long? I know that stable disease is all in all a positive result considering the alternative but I am wondering if this is an indicator of Ibrance not doing much
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Hi Daniel,
My MO does use my primary tumor from my breast (and the two lymph nodes that were swollen in my armpits) as the "canary in the coal mine" for the rest of my disease. This makes me feel a little worried sometimes as it seems to me that the cancer could show up anywhere in my body, as I see this happening to multiple different people on these boards.
For me, my primary tumor and nodes have shrunk (primary tumor is gone) and on the last CT scan, showed armpit nodes were finally much decreased in size (this is 2 years and 2 months post starting treatment).
I guess there is some wisdom that the MO's have that the primary tumor may become active again, in their experience?
It sounds like you are concerned that your wife's tumor hasn't shrunk at all, it is just stable? And it would be much nicer news to know that it has shrunk rather than is still sitting there, albeit quiet. I would feel anxiety around this too.
Have you spoken to your MO about this and if so, what do they say?
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Thank you for your reply Philly! Maybe my wife is the other way around and while her lymp nodes have responded, the primary is taking longer!? It doesnt help that the radiologist performing the exam is not always the same. Anyway, we emailed her oncologist, so we are waiting for her answer.
Ps. Seems like you enjoyed your trip.to Italy eh? So was the driving better or worse than NY here?
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Hi Daniel - maybe so! Reading those dang radiology reports can really do a number on one's psyche! I have the same predicament with different radiologists writing my different scan reports.
After my last CT and Bone Scans, my MO told me: all is still quiet. No changes except my lymph nodes have shrunk a bit. He told me all good news!
Then I got the written results which stated that, "There are multiple areas of increased activity, including the cervicothoracolumbar spine and the pelvis including the left anterior iliac crests and the left acetabulum. There is no significant change compared with prior. No new bony lesions. This finding is compatible with multiple bony metastasis."
Welp - that just threw me into a spiral! How much more confusing can it get?
I did email my MO and he wrote this back: "I interpret the findings on the bone scan to be consistent with good control of the cancer. I would be more concerned if there were new areas that were abnormal in comparison to the prior scans."
So what can a person do?? I am going to just roll with it and let it be.
And Italy was AMAZING! I absolutely loved the area I was in. And Milan is a very wonderful, livable city. I could see myself easily living there! Fortunately, we did not drive in Milan at all. But we did drive from the airport to Alta Villa and all around. It was super easy and not stressful. The worst part was when the driver's want to pass you and come up RIGHT on your tail. Very aggressive but not the worst. I think the scariest driving I have experienced thus far in my travels is in Jamaica honestly.
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Hi Daniel and Philly,
I still have my primary tumor and my MO seems to watch that closely. Initially it shrunk a great deal on Ibrance but now it has been the same size for over 2 years which I guess is good. I was, of course, hoping it would disappear. My other sites in the sternum and nodes did seem to disappears. I agree that the radiology reports are very confusing-I have numerous bone mets but I guess they are mainly healed. What I really dislike is the uncertainty of whether something is arthritis or cancer!!! I'm with Philly-I just roll with things and stay with the Ibrance dance. I feel blessed to have no pain which makes me think I don't have any active bone mets.
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Daniel, since I was diagnosed with BC 25 years ago and ran a cancer support center for most of that time, I've seen treatment strategies change. There was a time when immediately upon finding a tumor the whole breast was removed. They didn't even do full body scans until that was complete. Then the trend went toward lumpectomy/radiation sometimes with chemo in between.
For some years now I've had friends who did chemotherapy before surgery and radiation. They were often given a choice between that and immediate surgery.
Only since I've been on this thread have I heard of people leaving breast tumors in place when they have metastatic disease and watching treatment do its work. I wonder if that has only been with the advent of Ibrance. I don't know.
All this to say, some of the friends who had chemo followed by breast surgery found that their tumors, though still present, seemed to have lost their steam, so to speak. The masses still showed up but contained far fewer cancer cells. (Sorry for the poor explanation but that's the way they told it.) I wonder if your wife's breast tumor might be "losing steam" in that same way with Ibrance. Is she in a position to ask for surgery to remove the tumor? I just remember how much better I felt both times when my tumors were out of there. Peace of mind is a really valuable thing.
Love from PatGMc
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Pat, in the article you linked I found this interesting bit: "Drugs like Herceptin only target high levels of HER2, and women with lower levels must rely on hormone therapy or chemotherapy. That's where DS-8201 has the potential to serve far more patients, treating those with both higher and lower levels of HER2." Of course I wonder how low! Anyway, as you say it's exciting to see new things on the horizon. The cynic in me notes that this is getting a push just when herceptin is losing its patent status but whatever motivates them, right?
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Muddling: how are you doing?
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Monitoring the size of breast cancer tumors has been around for awhile and isn't a recent development because of Ibrance. There is a very good book about Herceptin, which made its debut in the 1990's, and one of the more well-known women who was in on the first clinical trial, Barbara Bradfield, had mbc and was able to feel the tumors shrinking. She had one tumor in her neck and when she met with other women in the clinical trial, they would all line up to feel how her neck tumor was diminishing thanks to Herceptin. (She survived over 20 years, not sure what's happened to her recently, but she was someone with an exceptional response to treatment). Since the time I joined this forum in 2011, I've known of many women here who've monitored their breast tumor size to indicate effectiveness of treatment. Myself, I had surgery to remove it and am glad I did.
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I hadn’t been posting much at all for the last couple of months, and in fact went through a long stretch without even looking. My teenage daughter has been having a really rough time, and I’m about as stressed and exhausted as I could imagine is possible.
I just got caught up in my reading and must say again how fully and completely I admire you brave, funny, and generous souls.
I learn, I laugh, and I cry along with you even if you do t hear from me much.
I just needed to say that :-)
Bless you all!
Love, Penny
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MuddlingThrough, I too liked the sound of that about the HER2. I imagine they'll find better ways to measure very low levels of it, huh? I remember when I had my second occurrence in 2002 (I think), they gave me a second test (FISH) before they declared it HER-2+.
It's been interesting to watch all the new drugs that have come out or are in trials to compete with Herceptin just as the patent runs out. I remember when the AIs came along as Tamoxifen went generic, how much more expensive they were. The system can make one feel a little jaded but, you're right, whatever motivates them!
I recently learned that my next drug, Lynparza (we think), will be high dollar like Ibrance. My oncologist expects that the ones in pill form will continue to be outrageously expensive. Fortunately, he told me he's dedicated to finding ways to keep his patients from going broke on these medicines. I hope everyone has a doctor like that!
Love from PatGMc
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The 1990’s brought about another important contribution to treating breast cancer. Dr. Angela Brodie developed the first aromatase inhibitor and got it into a clinical trial to treat bc, and the rest, as they say, is history. The aromatase inhibitor was seen as a significant improvement over tamoxifen. It’s sucky to get mbc, but there have been some major improvements in treatments we have access to that weren’t available 25 years ago. And the internet helps connect us in a way never known before and disperses information so rapidly across the entire globe.0
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Hi Philly,
I'm doing so-so. I've had a bad cold for about week and a half. TM's up and MO wants to check again next month but not sure how accurate they'll be with me being sick and starting antibiotic for cough/bronchitis.
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Hi Muddling,
thanks for updating us. Bleh about the bronchitis, no fun! I hate being sick. I get so down. I hope you are finding some good binge-worthy shows to watch? One I absolutely loved loved loved on Netflix is called Offspring. If you happen to check it out, just promise to allow yourself to get through the first two episodes...it gets better and better and better. I didn't want it to end. Hugs my friend! Hope you feel better quickly on the antibiotic and that you will be able to get out of the "limbo zone" - such a funky place to hang out!!!
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I am about to cry. I am thinking I may be allergic to the Ibrance!!!!
I don't know if it's that or the letrozole or the Xgeva...but I have some hives...not all over...but a little patch of them on my hip... I did get some after my first Xgeva shot 3 weeks ago but I took some hydroxyzine and they got better. But periodically since them I get some then they go away.
I do have a skin condition that I had for a year and half that I get itchy bumps (that look more like bites) that they cannot figure out what I am allergic too. but these are definitely different ..like hives. they are not all over and I do not have shortness of breath or anything like that.
I am terrified she will say stop the Ibrance..
I have nothing going for me without that..I mean lets be real here..that is like the best stuff right now. I did send the Dr. an email and her nurse.
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Nicole - I had weird itchy bumps too in the beginning. Some of them formed white heads or pustules (gross!) and were insanely itchy. I had three bumps on my arms that looked like huge giant swollen scary things. It was freaky and right during a grand opening I was having of my new clinic it was embarrassing! Right on my arms in plain sight. I went to my MOs and they all seemed baffled. I had about 10 practitioners look at them and they took my blood. Everything was normal.
I took Claritin and put Benadryl cream on them too, which helped with the itching. They ran their course. Knock on wood I haven’t had any since the first few months on Ibrance.
Another thing that can help with hives is an antidepressant (and bonus it helps with all the anxiety AND hot flashes!!). I fought it for a long time. But there is a neuro-immunological connection and when we are highly stressed, we have more skin reactions as well. They are often prescribed for people with hives, to help.
I think you and your MO will have to decide what you can handle and what you are comfortable having your QOL like with the medications you are on.
I can’t make any promises, but this may be a phase you are going through as your body adjusts to the medication regimen. I am encouraged by the fact that you aren’t going into anaphylaxis.
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Nicole, I'll be surprised if this keeps you off Ibrance. Itchy rashes are common with my oncologist's patients. For a very long time I had wild itching from knees to ankles and on the tops of my feet. It has mostly calmed down in the past year or so. One red, itchy bump held on for dear life to the top of my foot until I took a one month break from monthly XGeva. I got an XGeva shot early this month and that bump is flaring again so now I too wonder if it's XGeva that caused the itching in the first place. Poor old Ibrance gets blamed for everything! (I've been on Ibrance/Arimidex/XGea for about 32 months.)
I pray the itching stops and all is well.
Love from PatGMc
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My Oncologist wrote back and said she thinks it is more likely from the Xgeva and lets wait and see. I am really happy about that!!!! I guess the Xgeva is kind of time released or something to that effect I mean since I get it once every 3 months.
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yes - I believe it was the Xgeva that caused my itchy bumps too. I am on the quarterly injection regime.
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i am now doubting that it is the xgeva. (which I am on the quarterly regime as well)... I take the ibrance with dinner...about 5pm - 5:30pm Wednesday night I started itching with hives about 9pm. Last night I took it at 530pm I started itching about 945pm -10pm...same hives same spot started itching
I am now just praying it will go away the longer I am on it but I don't know how good of a chance I have at that since this is my 2nd cycle and the first cycle I seemed good. I would have surely thought it was from the Xgeva or even the Letrozole, since I have been on the Let. the longest.
I took 20mg of hydroxyzine (prescription antihistamine) I do have them in 25 mg maybe I will take that each night instead?
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Nicole-Are you drinking lots of water-like 72 oz per day? If not, try that. I never got hives but my skin became very sensitive under Ibrance/Letrozole. I no longer wear any jewelry b/c it itches too much. Moisturizing and lots of water helps me. Good luck.
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Is it possible there is an ingredient in the generic letrozole that you are allergic to? Can your pharmacy provide you with another manufacturer brand? Will your insurance pay for Femara, the nongeneric, in case it is your generic antihormone causing you symptoms?
I guess you would start with contacting the pharmacy/pharmacist providing the drug?
You can also contact Pfizer pharmacy department and ask if they have seen allergies to Ibrance ingredients.
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For what it's worth.....when I was on Ibrance, their pharmacist told me to expect a rash. That's how common it is. (I never got one) But, hives and a rash, in my mind, are two different things.
Hives are almost always an allergic reaction.
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Thanks all. I do not have the generic of Letrozole I have the brand. Don't know if that makes a difference.
If it is an allergic reaction then wouldn't I by now like have shortness of breath etc? Also, I wonder why it comes and then goes...??? By that I mean.. like it will itch like crazy I take the Hydroxyzine and it helps and even the next day when the Hdyroxizine wears off it doesn't necessarily itch maybe here and there but nothing big.
I just wonder if eventually my body will just get use to all these meds? I had a feeling from day 1 ..I was worried about the mycoplasma and Lyme disease I had in past being bothered by all this.? My lyme has been in remission for years but my body is funny it doesn't always react well even with healthy things.
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Nicole, Take a look at the Femara thread. There are some people there talking about skin reactions to femara.
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