Ibrance (Palbociclib)
Comments
-
Re: My oncologist
He is a lovely man who has become a lifelong friend to my family. His nurse says he saves me to the end so we can chat longer. (I don't know if that's true but it makes me feel good!) He's a big collector and has bought my art from the gallery which is just so incredibly sweet. He never fails to ask me what I'm working on.
When my daughter was diagnosed with TNBC 10+ years ago I saw a trial using standard chemo + a new drug, Avastin and left a note on his desk about it. After her appointment she told me her regimen and the new drug (not approved for BC) was on her list. It turns out he was a big believer in the promise of the drug and decided to make sure she didn't miss out by getting randomized in the trial. He told his insurance people to try to get it covered but they weren't able to make it happen. I found out from the insurance person after my girl finished treatment that he had paid for it out of his own pocket. It still makes me tearful. (Avastin didn't get approved but, fortunately my daughter has not recurred after 10 years. I thank God and who knows whether He used the Avastin?)
During my appointments he always goes through the list of things they're required to ask....What is your pain level? What are your side effects? Other stuff but I forget what. He leaves the room and gets my lab reports. He always speaks of the hope of new treatments coming down the pike. He grins as we celebrate what a genius move Ibrance/Arimidex/XGeva was for me. (I like telling him he's a genius! Oncologists don't hear that enough.)
About the side effects, I only mention them to him in passing as he has two nurses dedicated to that. I'm instructed to text or email mine with any side effects. I don't use up my time with him on those.
At an appointment a couple of months ago he sent his nurse out to the waiting room to ask about my BRCA1 status. He remembered I was positive but wanted the details before he saw me that day. Lynparza, the PARP Inhibitor had been approved for MBC that week and he wanted me to know it was in his back pocket for me should I dramatically progress on Ibrance. I had been asking about it for years so he got to enjoy that moment.
Even though I usually get my scan results through the patient portal before I see him, I don't tell him that. Most of my results have been good news and I like for him to have the joy of telling me. When I had a little progression I wanted him to be able to tell me that too, then again when it backed up. I have been known to tell him something my Internet friends (that would be you!) have suggested and he finds that amusing but he listens and responds. I emailed his nurse about this week's desire for Celebrex so he and I wouldn't have to use our time on that.
I tell you all this not because I think this is a perfectly likely situation for everyone but so you will look until you find a compassionate person to protect this one and only life of yours. If the doctor would not be nice enough to be the doctor of a child you love, he's not good enough for you. May I add that I'm ZsaZsa Gabor when it comes to oncologists.....He's my third! (I take my own advice.)
Love from longwinded PatGMc
0 -
Love your Onc, Pat. I also compliment mine and I do think they are human and need to hear it directly from us, once in a while. And I agree that if Candy’s Onc is not a fit because you don’t feel he gives you the attention you need to leave the appointment satisfied, then by all means find someone new.
Love to all,
Lauren
0 -
WOW Pat - I love this story and how you have written it. I cannot evwn imagine a doctor paying out of pocket. He is a very special person and so are you for him to do this for you and your daughter...amazing...
Gumdoctor
0 -
You know who I miss? Airlinegal. I did my regular stalk and the last time she posted was May 12 of this year. That's almost three months. So if you are hanging around, airlinegal, pop in and say hi. I hope you are just off living your life with no thought of C ever.
0 -
Drawing on the collective wisdom here: I am on my first bottle of Ibrance -- today is day 13. Several times during the past week, I have noticed a weird sensation when, for example, I am in my car and getting out to go into the grocery or something. It's not dizziness and it's not quite shortness of breath -- it's just this kind of weak feeling like I might not make it into the store. If I stop for a minute, then it goes away. It doesn't happen consistently -- I just do not know when it will happen.
Trying to be my own detective, I've noticed that if I eat something small shortly after this happens, then it seems to go away. That made me think it's related to low blood sugar (which I don't usually have.) However, I don't see anything in the Ibrance literature that says that it can lower blood sugar -- but it's kind of that sensation.
Has anyone else experienced this? I am having my blood pulled on Monday, so I guess I'll know if it's something that shows up there.
Thanks for any advice.
0 -
BevJen, I have something like that too, usually in the a.m. shortly after breakfast and taking my meds. I try to ignore it but sometimes end up having a little snack and it helps. I tried to explain it to my MO at my first visit after starting treatment and it came out like a lightheadedness like my head is wrapped in cotton along with some mild nausea. Well, next I had stat orders for a brain mri because of the way I explained it. Mri was fine but I guess I’m glad the doc wanted to find out. I’m on cycle 7 and the lightheadedness is pretty much gone, just some queasiness mid morning for me. I hope it improves for you
0 -
Thank you Lauren and Pat for the good advise and wisdom. I do appreciate it.
Lauren- I do try to stay away from the "what ifs" because we don't know what progression will look like in me-- when, where, and how. I did ask my MO once what she thought my next treatment may be and she said Ibrance/ Faslodex. But who really knows yet. I did ask her the other day about the autoimmune issue and future cancer treatments--interactions or concerns. But she didn't answer that since she was so upset about the autoimmune issue already. I do mention that I read about clinical trials and new treatments ( posts on BCO ) so she will know I am active in my care. And I did bring up the subject of my TM's and their accuracy at this last appt. I don't know how we are watching for progression other than every 3 month scans since TM's may be inaccurate and I had no symptoms even when the liver met was 8 CM's !!!!!
Pat- You are lucky to have an onc that is also a family friend. You should feel confident he will care for you as he would his own family. Aaaa the "required list" of questions. Pain level--- I have Rheumatoid Arthritis, AI use, and Bone Mets. Yes I have pain. Where. Generalized. What do you take for it. Tylenol Arthritis. Does it help. No not really. End of discussion. Depression question--- Are you depressed. Yes I have MBC I have depression. How many days a week. Several. But I get up, shower, go to church, manage my household. End of discussion. Why ask these questions if you don't recommend anything--- pain interventions, counciling, etc. I have mentioned my side effects at previous appts- constipation, pain, fatigue. No recommendations. I had F1 study that showed BRCA mutation with recommendation of PARP's. Onc has never mentioned that option or discussed the F1 results. ( I have copy of report )
I am sorry to be long winded also. But I want you all to know I don't hound my onc at each visit. In May I had the TIA and then the autoimmune issue was diagnosed. I felt these were important to discuss at onc visit. We don't rehash my concerns--future treatments, side effects, etc EVERY visit. I have a post it note with me with items I want to cover when I go to appt and I don't call the office between visits. Well once I called for a med refill and once I called to check on approval of upcoming scan.
I understand my MO is busy. But I don't want to be just a number, a 15 minute appt in her busy day. And, God forbid, I don't want to be thought of as Stage 4, no hope, what does it matter what we do for her. I think the true test will be when I have progression. Will I be allotted more than 15 minutes. Will I be included in the discussion of options for treatment. But my sister made a good point. If I wait to see how she acts at progression, will it be hard to change then when time is of the essence.
Jaycee-- Hope Airlinegal is ok too.
BevJen- I too have had "weak" spells. But usually linked to a hot flash. Flash, rapid heartbeat, dizzy, and weak. I would suggest telling onc, but hahahaha maybe not. (This post subject)
0 -
BevJen and Rosie, I've always thought it was better to take it later in the day, with more food in your system. If food helps, that may be a clue that later in the day might help. I take it with dinner. I think some others do, too. Bev, I would mention it when you have your blood work on Monday. It may not be something that would show up as abnormal in blood numbers. If you are both on 125 mg, don't forget the option at some point of going to a lower dose.
0 -
BevJen- I had what you describe randomly also and also concluded it was low blood sugar- I took bars with me everywhere and found a bite or two fixed it. I wasn't scientific about it- I started to eat half a bar before yoga to prevent it also. Occurred on walks a lot for me. I stopped needing to do that eventually. I don't have it on the Afinitor.
0 -
BevJen, I have had those "Ibrance Moments" throughout my almost 3 years on the drug. They feel a bit like a blood sugar issue and I do have fewer of them when I eat regularly. The other time I can count on one is if I bend over which gives a sensation like my heart is racing and I'm lightheaded.
candy, I'm sad to say that the reason oncology offices ask "the questions" is because they are required to. It's on the list of things necessary for their accreditation. The depression question was laid on the techs in my cancer center's lab until patients complained about being asked in a public place.
For those of you unhappy with your treatment, those accreditations also require that patients get a survey to fill out concerning visits and general care. Say what's on your mind there. If you don't get a survey, write to the head of your hospital and give constructive ideas about how things could improve. You don't have to sign your name if that worries you. Your goal is to make things better for yourself and others. Go for it!
Love from PatGMc
0 -
Pat- My cancer center asks the depression question in front of the other patients also. When I get my injections and port flush in the infusion side of the building with others sitting there getting their infusions. They also ask- in public- if I am having constipation/diarrhea and when my last BM was. One big happy cancer family. We all know each others situations. I have never received a survey.
0 -
yep, the hippa law apparently doesnt apply to cancer patients. Thats a privacy law in america. I noticed it here right away.
0 -
Thanks to everyone who responded to my "weakness" issue. I am taking Ibrance after dinner -- so it's not related to timing, I don't think. But I will be sure to mention it to my MO because it's worrisome.
0 -
I am on Olaparib for the last 2 and a half weeks. The side effects are bad. I am managing nausea with zofran, but I have fatigue and tiredness too. I feel sick and always want to lie down. I am hardly able to do 50% of my chores. What kind of immunotherapy id your doctor suggesting?
0 -
Bev...are you on 125mg? If so you may need it lowered. Mine was lowered after 1st bottle. Remember sometimes getting lightheaded and other things. I am grateful for the ladies here they always replied to all my SE concerns.
Hopefully if they go to 100mg that will subside.
0 -
Nicole,
Yes, I am on 125. So that's the first question I'm going to ask -- can it be lowered? Not sure I understand why everyone starts at the highest dose, but as some have discussed, that seems to be the failsafe because of the clinical trials. This is really the only SE that I've had so far, so we'll see what happens with my blood tests on Monday.
0 -
sorry you are having this problem. I was started at 100 mg. No longer on it tho...
Gumdoctor
0 -
Bev I go Monday too and I think she will be ordering my first 3 month scan....so hopefully I will have the scan in the next week or two.
0 -
Hi all - I saw this on an MBC Facebook group and thought you all might be interested, given this is a common topic of conversation here. I’m going to check it out.
Hey ladies, happy Friday! I see a lot of women on Facebook trying to navigate their treatment options, asking questions like: "What are the treatment options for my metastatic breast cancer?", "Should I join a clinical trial or do a standard treatment?", and "What side effects do I need to plan for?" I work in breast oncology, and I wish everyone could have access to the answers to these questions.
The free "Outcomes4Me" app can give you access to this information. After downloading the app, you answer a few quick questions about your cancer, and the app personalizes to your details. Approved treatments are shown based on the 2019 NCCN (National Comprehensive Cancer Network) treatment guidelines, and recruiting clinical trials (in your area, for MBC) are shown from ClinicalTrials.gov. This can be helpful whether you want to learn more about your current treatment, get a head start looking at future options, or if you are just curious.
In addition, you can track symptoms, record notes, and submit symptom management tips to help other patients. The app is just a few months old, and we are always looking to improve it, so please let me know if you have any feedback or suggestions!
Apple: https://apps.apple.com/us/app/outcomes4me/id140438...
Android: https://play.google.com/store/apps/details?id=com....
Love to all,
Lauren
0 -
thanks LaurenH! What an awesome resource you’ve created!
I downloaded the app and it is easy to navigate and very user-friendly
So far looks like I’m right on track with what the app recommends and the treatments I am receiving.
Hugs!
Philly
0 -
Thanks Lauren as I do not have facebook so I appreciate the post
0 -
I don't know how many of you remember a while back I posted about having had these itchy bumps that looked like bites on and off for the past almost 2 years...well they are gone now...and I wanted to share this post with you that I had put in the Fenben thread maybe some of you have some thoughts maybe not.
So about almost a year and half ago now I had started having these itchy bumps...on my elbows, arms, knees and thighs...they almost looked like flea bites (I mentioned about this in the Ibrance thread a while ago) anyway at the same time (about a year and half ago) my left lower back and left hip were bothering me really bad that I went to an orthopedic surgeon. They did a CT scan found nothing thought it was bursitis. I went to 4 Dermatologists for the itchy bites (bumps) at one point they went away, but they would come back. They tested me FOR EVERYTHING. Every single food allergy environmental everything came back negative. They took 6 biopsies couldn't figure out what it was. I thought it was this Gluten Sensitivity called Dermatitis Heproformis..(which only affects the skin not the gut) .but I tested negative for that too and then I knew it couldn't be that because when the bumps would go a way for a few weeks I still was having gluten.
Finally now...after being diagnosed with Stage IV they came back again..this time.I went to Dermatologist here in Long Island at Stony Brook Med. University. He takes 1 look at me and says this:
"Generally when I have patients present with these same things its either some medication or supplement they take daily or I sent them for a full scan because it usually means they have cancer somewhere in the body"
My husband and I looked at him I like wanted to cry!!! This was the first guy after 4 different dermatologist that said that. He then asked what do I take on a daily basis (not including cancer meds bc I had this long before I was taking the cancer meds) I told him Claritan D, Vitamin D3 and Magnesium. He told me to try stopping 1 of them at a time. I did. I now know it wasn't the Clairitan D., or the Magnesium. It may be the Vit D3 I just started re-taking it a week ago...but still nothing itchy. If it turns out its NOT the VitD3 then it is the cancer and maybe the Ibrance/Letrozole, Faslodex are working. If you remember above when I said I had that pain in my left lower back and left hip almost a year and half ago that was when the itchy things started. Come to find out 3 months ago I have a met in Sacrum and 1 met in left hip. So...is it a coincidence that the mets started to bother me at the same time I got those itchy things??? That leads me to believe it was the cancer.. and now the cancer meds I am on are working??
When I posted this in the fenben thread it was a little different because it was about anti fungals ridding the body of cancer...and I was thinking maybe my cancer as fungus related and that maybe the Ibrance/Let/Faslodex etc were working and thats why now I do not have these itchy things anymore.
0 -
Ginny. I too am just finishing my second cycle of Ibrance, so cannot speak to how long it will last. My consulting oncologist felt that I should have a good long run, so my fingers are crossed!
BevJen. I was so lightheaded walking into my second set of Faslodex shots that I was given an IV!!! I worked on this two ways. I always carry water and try to make sure I have at least 64 oz per day. Also, I read from someone else somewhere on the boards about keeping potato chips with her to help with that. For me, it wasn't blood sugar as I'm pretty good about regular eating, and take Ibrance at night. I have started carrying around salted peanuts, and when I have that woozy wierd sensation, I have a couple handfuls and it settles right down. I have to admit, though, potato chips taste better.
0 -
as far as the woozy dizzy head in a vice sensation, I find that if I chug a couple glasses of water, that helps a lot.
When I think about my “new normal” a large part of that is being acutely aware of my body’s signals that it needs something. Usually water first and then very likely food or a snack.
I have become incredibly sensitive to being dehydrated even in the slightest bit.
My advice is to drink a LOT of water. Hope it helps
0 -
Nichole - the body’s immune system is going a bit haywire as there is a ton of metabolic activity happening with the cancer and the medications, add that onto a high anxiety and stress and grief and all the emotions that having a MBC diagnosis brings with it, can cause strange manifestations, like itchy bumps on the skin that could be some type of hives.
Also, Xygeva does cause some itchy bumps. I had a couple zingers during my first year of treatment that scared me a lot. I put an anti-itch cream on them and took a Benadryl before bed (extra sleep benefit bonus!) and they would eventually calm down and clear up.
How are you doing with stress and anxiety management? Do you feel that there is a possible connection here at all?
0 -
Lovefromphilly... my itchy bumps were there a year and a half before I even knew my breast cancer was back and so was the pain in my left lower back. So the stress of knowing I have MBC wasn't the cause because I didn't even know I had cancer. The meds weren't the cause either because I wasn't on any cancer meds. That was my point. I had cancer brewing in my body a year and half before I actually was told it was there. My met in my sacrum is so small even now that the CT bone scan didn't even pick it up in March...it wasn't until 2 months ago when I had an MRI it was caught.
I am just stunned that that dermatologist said usually when patients present with what I presented with there is usually cancer somewhere in the body. Meaning their body has a reaction to it. Now that I have been on my cancer meds for 3 months the itchy bites when away.
I did get hives from Xgeva my MO wanted to do the other one that you have to infuse..Zolmenta?? I asked her to give me another try with Xgeva since I only had it once and only get it every 3 months. She said ok. So next month I will take a benadryl right before or right after. I do take Claritan D everyday already.
Stress wise I am ok right now. I definitely do not feel there was a connection because I had those bumps when I had no stress in my life at all before i was even re-diagnosed. I have my moments or days where I get down and think I only have a year or 2 to live...but other wise I think I am in denial because I really forget or don't believe this is happening to me. Thank you for asking though.
0 -
hi nichole! Oh my apologies! I thought you wrote that you are currently having the itchy bumps and that they are reoccurring from pre-diagnosis?
I’m confused! Sorry brain’s been mushy lately and I feel like I am having a tough time remembering things.
I guess what I was trying to say in the beginning was that it sounds like your body and your immune system were signaling to you before your diagnosis that something was amiss. I had a similar experience of noticing some changes such as I felt like my body odor smelled differently for a few years prior to my diagnosis. I also had an incredibly itchy area right on my back kinda between my shoulder blades. It was always itching! And I have always had achy shoulders and shoulder blades. I also had a weird thing happen during one a Qi Gong retreat where my back started making this popping sound every time I shifted my body weight. I now wonder if that wasn’t possibly the bone metastasis in my spine?
Nichole what do YOU think is happening? Do you have any insight or intuition as to what the itchy bumps are about?
0 -
Philly... yes I now totally think the cancer was causing the itchy things. So that gives me hope that the Ibrance/Let etc. is working to subdue the cancer. I will find out though soon when I go for my 1st 3month scan this month. My appointment to see MO is tomorrow so she will probably tell me to schedule the scan.
Thats really amazing how you also felt something wasn't right in your body. Ya know my dog knew. The first time I had the cancer he was all weird..like he started only sleeping with me and on me, where normally he would sleep like spoons with my husband. After I had the radiation and lumpectomy he stopped sleeping with me and being on me all the time. Then about a year before I got re-diagnosed he started doing it again!!! Sleeping on me and constantly had to be on me...even my husband had said..." I wonder if you are sick again if your cancer is back???" !!!!!! Sure enough I got re-diagnosed. We don't have him now but I swear he knew.
I just hope those itchy things stay away they were horrible!!!!
0 -
Nicole, I'm thinking we should save the money we're spending on scans and come see your dog!! (Oh, I see you don't have him any more. Never mind. Back to the machines.)
Love from PatGMc
0 -
aw man!! I’d much rather a doggy find my cancer!!
I’ve actually seen some specials (maybe in NOvA) about cancer-smelling dogs. This is not such a rare occurrence apparently! Doggies have such incredibly sensitive noses. They know!
Here’s a story about it that was on the BBC
0
