Ibrance (Palbociclib)
Comments
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About ignorant doctors: My mother is a retired physician. A month after I told her of my scan and lab results, she called me and asked, "Are you all better?". I was stunned into silence. I had told her I would be starting Ibrance and Xgeva. I assumed she would take the time to read about them, but I forgot that she used to send articles such as what I should be eating to prevent cancer. She did listen when I told her to stop sending any articles ever again. Anyway, medicine is a huge field of study. Doctors should stay in their lanes.
On unwanted comments about our medical stuff: My boss called my glove my Michael Jackson look knowing that I wear a sleeve and glove for lymphedema. I usually work from home, so it only happened a few times. Hope it was my glare that stopped him. Now I'm on leave and don't care about work. If people don't know about my cancer and ask about the sleeve, I just say I had surgery that damaged my lymph nodes. If I needed to explain crutches, I would probably say I had nerve damage from a slipped disc. But if some rude stranger was asking, I would say I had flesh-eating bacteria and hope the treatments got it all.
lwrite - So nice to see you're in your 51st cycle! Do you think the neuropathy is from Ibrance? I had it briefly with Taxol.
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I actually tell them I had a bizarre water aerobics misshap (which is true!) and then lay on the guilt that it was helped along due to weak muscles from sitting on my ass for 60+ hours a week last spring for some dumb work project (it was high profile internally so everyone knows which one it is. They have four people covering my role on it this year). That extra layer of guilt trip does help I've found
Last night I had the opposite happen. I stopped at the store after Hospital and when I was perusing the cheese the lady next to me mumbled something about 'watch your sticks please'. I was leaning forward so I thought perhaps one had slipped behind me - so I straightened up and said 'oh, sorry'. Turns out she was talking to her young daughter in the stroller who looked up rather innocently holding a very long twig in each hand. The lady was mortified thinking I had thought she meant my sticks - 'oh my, can you even imagine?! Who would ever say such a thing!' We had quite the laugh over the misunderstanding - it was like a comedy sketch.
Aprilgirl - I like how you got mansplained / medsplained by the dentist of all people. What does he know about breast cancer that would prompt commentary like that? I suppose its people wanting to say something to be helpful and want you to be alright.
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Sondra, your twig stick story is hilarious! Really does sound like a comedy sketch, hahahaha!
Serenity, my gosh. For your own mom as a retired physician to misunderstand your diagnosis...well, perhaps she has a hard time facing her daughter's reality.
I've had my own pcp look at me with sadness in his eyes when he saw that, after chemo, lumpectomy and radiation, “all" I was on was the a/i pill, Arimidex. That one med kept me stable for seven years! Obviously he didn't have much experience with mbc patients.
Speaking of unwanted articles, my sister-in-law has sent me several over the years. I know she means well but I find it a superficial way for the sender to feel like they're showing they care. The latest wasn't even medical, it was a religious music video: A beautiful woman wearing a flowing white gown meandering through rocky terrain above crashing ocean waves, singing to God to rescue her. SIL totally misses the point. I'm not living a life that I feel I need “rescued" from. The video came across as some Cinderella hoping a white knight prince will come save her. A very passive view of women, waiting for someone else to solve their troubles. When I see SIL in person I'llshare my differing views.
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Candy, wishing you good results in next scan
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Husband11 - both WBC and RBC dropped with Ibrance (also taking Arimidex). Just started Cycle 5 this week. DR says both are low, but not alarmingly low, and within range of someone taking Ibrance. But talk to your DR.
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I called Pfizer regarding the low RBC count and anemia, and they asked for our oncologists name so they could speak to her, but I have my doubts that she will take the time to communicate with them.
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Quick question and comment.
Question first, unless any surprises pop up I’ll be starting cycle 4 On feb 5th, that night after my appt friends are taking my husband and I out to a Mexican restaurant. I’ve never had a margarita or sangria before, I’d like to try one. Should I be okay to start cycle 4 that night or should I start the following morning so there is longer space between alcohol and Ibrance? What would you ladies do?
Quick comment on stupid things people say regarding this disease. I raise my hand high to say I’ve said a lot of stupid things in my ignorance prior to my own diagnosis. I still say stupid things even in my illumination to this day sometimes even with a stage 4 dx. It’s a balance of wanting to be comforting but not knowing what to say. Doesn’t make the stupid things easier to hear tho. I know when I’ve known I’ve said something stupid I can’t get the “ugh God, why did I say that?!” out of my head. For sanity’s sake I try to apologize or really promise myself to be more mindful and thoughtful with my words. But that doesn’t stop the stupidity leaks from trickling out to my dismay. I’ve had a lot of heartless things said to me in regards to this disease. But I think the more we educate even if it’s through winces, perhaps the less stupid comments ( aka stupidity leaks) we have to contend with.
Love to you ladies and thank you in advance!
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oh gosh how i enjoy these stories of misunderstandings and medical professionals stepping outside of their "scope of practice" to give medical advice. UGH!
I have had quite a few myself. A hygienist looked like a deer in the headlights when she found out I had MBC. She stood frozen, staring at me like a museum exhibit. I had to tell her not to worry or be sad for me. She seriously didn't budge and stayed frozen for like 5 straight minutes! AWKWARD!
Another one: I recently met with a new PCP. She was doing my intake. When I told her my health history she said "oh my god" over and over again. LOL. OH BOY! She told me that she could tell by my energy and great spirit that those things will keep me alive and stronger for longer. I think she meant well, but truly people write us off as death sentences as soon as they find out.
I think that I "look" so good and healthy and normal that other times when I have met oncologists or the nurses in the hospital, they actually do not realize I am the patient. They are always shocked to find out that I have MBC.
Things that make you go hmmmmmmmmmmmm
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SondraF, your story reminded me of the first season of Modern Family's similar incident (misunderstanding something someone meant). I laugh every time...
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During my annual gyno appt last June I was getting my vitials taken. I was a month fresh into my Stage 4 diagnosis. I was in tears because my gyno is the one who discovered my initial cancer with me when I showed her the lump. I hadn't seen her since that visit or the phone call I heard a couple days after my biopsy from her that I had cancer. It was a hard visit on many levels. I wore a maxi dress to the appt because doing a breast exam now would be kinda pointless.
The nurse kept asking me to change into a gown because the doctor will want to examine top half of me. All throughout the vitals being taken I was crying and said I had just been diagnosed with metastatic breast cancer. But she was really insisting I change into the gown instead of simply allowing me to drop my drawers. I kept saying over and over I have metastatic breast cancer that doesn't matter now. Didn't register. When she came back with my gynecologist, my gynecologist said she'd be skipping that exam, couldn't help look over at the nurse after she said that. Gyno says “well, you look good considering, at least we found it!". Went over med history for last yr and overall history. Had to correct a very large mistake as my file was went over(they had listed my 2 miscarriages as abortions, boy did that piss me off) Dr. shook my hand and said good luck and nurse was on her heels out the door. The wall down the corridor felt even longer that visit, left feeling like shit, someway somehow I picked myself up afterwards.
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Radagasrabbit, I just recently had a margarita to celebrate my DH's birthday. (Delicious by the way..).
I take Ibrance in the morning, but I have never heard no alcohol when taking this drug. Is this documented somewhere? I will just pretend I didn't hear it. Ha.
Please take time to enjoy the fun moments. It is the memories that will sustain us during the bad days.
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I will totally admit that I have taken my Ibrance with an alcoholic beverage a few times.
I’m still here and the meds still work!
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Woo hoo! I’m diving in head first! What about Zometa? I’m getting Zometa that night too. Will be 6th Zometa. Thank you ladies! Trying very hard to enjoy the good moments. I have lots of them tho tend to write about my bad moments. Maybe I should flip that around a bit! Salted or sugar rims here I come!!! I don’t intend to get sloshed, but I will leave the restaurant “comfy”
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My MO just told me to limit alcohol to two drinks a month on my off week. I cheat all the time. I'm going to have a few 🍻 watching the Superbowl this weekend for sure.
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Rabbit,
It only takes a couple of drinks for me to feel it. I always tell my husband I'm a cheap drunk now.
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I just have mature beverages on my week off, and make sure to stick to a light pour on a cocktail or start with a half pint of beer/cider and have a (very large) water between half pints. Last weekend I was really thirsty after looking at a new place, so I had two half pints of cider one after the other and I got quite the buzz on! I used to do 5 to 6 pints on a Thursday night work drinks no problem a few years ago.
Have to say, I've kinda gone off alcohol really. I meant to have a gin and tonic last night but just....forgot.
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Hi all, I am enjoying the mutual understanding we share with this crazy diagnosis. For the record, my hygienist, who has been cleaning my teeth for 5 plus years was also a frozen deer,blinking back tears. I had to console her and tell her I feel fine and am expecting to do well on this treatment. GEEZ. Also, the oncologist insists on breast exams every appt although my breasts have remained beautifully clear of cancer since 2008 and have been heavily mammogramed and mri'd. The cancer completely skipped the breast and went to the superclavical lymph nodes and mediastinal lymph nodes. WHY DO I NEED A BREAST EXAM???? Whatever.
Alcohol: My oncologist told me 3 glasses/week of wine or alcohol. I did exceed this in Hawaii and it was my week off. Rabbit, I would go ahead and have a margarita to celebrate! YOLO! Good question about alcohol and ibrance, I don't know if its the interaction with the drugs specifically or just that alcohol isn't good for your liver and we are on some serious meds. I will ask next appt.
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Quick question - does everyone have breast-specific MOs or do they do a range? My guy his main focus is clinical research into primary brain tumors, so I don't know if he just does the breast clinic for funding purposes or how this all relates to the Head Honcho who is a big deal in breast research and sees a slate of patients too. I like to think I'm an 'easy' and early treatment case that doesn't need a lot of intervention or unique thinking on this right now, so got allocated to this guy.
I did ask at my appt what his plan was for keeping tabs on things because the breast has had changes and he just wants to go with CTs, no hands on exams unless the CT warrants it.
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Sondra- I live in a rural area so my MO is an all around oncologist. She treats lung cancer, liver cancer, breast cancer, etc. We have a lot of lung cancer in our area. ?? Agricultural area so the chemicals used on the crops and also coal mining in the area. And I know of only1 other MBCer in the area, so I don't think many of us in her practice. My first MO (moved from the area) made comments making me think he was not versed in Ibrance use.
I will see how things go as I progress on whether I need to go to a higher level of care facility farther from home.
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Well, I might be leaving you all at some point in the relatively near future. In December, I had an abdominal MRI. Showed that liver mets were calming down some -- less in number and also less in how they showed up. Also the remaining ones had begun to shrink. Interventional radiologist was ecstatic -- told me I was "kicking butt" with the cancer. Later in December, had a bad throw up virus (TMI) that ran through my entire family around Christmas. Next blood pull early Jan. showed a 14 point increase in my CA27-29. Onc not worried. Had blood pulled last week (wrote about this before). Had had another virus of some sort in my upper respiratory system that cleared out for the most part about 2 days before the blood pull. CA27-29 up again, though, and now CEA (which my onc tells me relates to the liver) up a slight bit as well. CA27-29 had been down when I saw the IR to 170 -- now back up to 200.
I'm so discouraged. Was hoping to have a long run on Ibrance, given my 16 year run on letrozole by itself. Praying against hope that these tumor marker blips are simply a reflection of these stinky viruses that I've had over the past two months. My TMs are sensitive to any kind of illness or fever.
Please send good vibes my way. Onc is setting up scan(s) before I see her next near the end of February, but unfortunately, since I have lobular, my scans haven't given us the clearest picture. Big sigh.
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Oh BevJen, sorry to hear that. I pray your TMs go back down and your scans are clear.
Sending virtual Hugs!
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BevJen, my wife has had several episodes of rising tumor markers while she was ill with flu or cold. Really hoping that is the case for you once again.
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BevJen - Sending good vibes your way. I'm sure all the Ibrance patients are hoping for a long run (I know my wife is). It would be tough to go to Plan B but there are other treatments out there with more coming. Know we're thing of you and hoping for the best!
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I have a question. How many of you have tumor makers drawn and how often do you see your onc?
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BevJen- sending you good karma and energy that the tumor market rise is due to a virus and your scans are clear.
SondraF - I go to a large cancer center so see a breast oncologist. My previous oncologist was also breast only (at the same cancer center) but she retired in 2015.
Dutchiris - like you I am fairly new to MBC, I was dx in November 2019. For now I see my MO once a month and they do blood work with tumor markers monthly. In my case my tumor markers have never been out of "normal" range , ever.
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I see my MO monthly with labs, CA15.3 and port flush.
My MO does not make tx changes based on TM, only scans.
I have scans every 3 months alternating between CT/bone and abdominal MRI. Had first PET/CT scan to verify possible changes in MRI. PET/CT showed nothing definitive, will repeat MRI in 3 months and PETCT in 6 months. Sad that I know all scan techs and ROs by name..it has been 3 1/2 years.
Some MOs don't even monitor TMs as not reliable indicator for a population of patients.
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My wife sees her MO (or PA) monthly with monthly blood work including TMs. Her MO watches the TMs but really is focused on scans (which are now every 6 months, which makes me nervous but my wife is rolling with it).
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BevJen, hoping the scans show no progression. Viruses do affect the blood in different ways. My TMs are not reliable and my MO does not use them except for long-term trends. Even slight progression on scans is not indicative of a change for me as I seem to fluctuate a bit and my cancer is slow growing. I get PET/CT scanned every three months and my next one is next week. I see my MO every 3 months about a week after the scans.
Sondra, my MO is an oncologist/hematologist and she specializes in both breast and liver cancer. I was sent to her because I was Stage IV de novo with mets to both bones and liver. But I live in San Diego so there are a lot of cancer specialists here. My insurance is an HMO so I go with their doctors, but I have been happy with my care so far.
I never drank alcohol so that question has never specifically come up for me.
I am 3 1/2 years past my initial Stage IV dx and have been stable after nine months on 125 mg the whole time. People now tell me I look "good" and i wonder what they expect me to look like. Only my family who live with me knows how I really feel. I do have good days where I feel pretty good as long as I don't do anything strenuous, and bad days where I just sit a lot. But I feel that everyday I am alive is a good day.
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BevJen I pray that it’s nothing too. Congratulations on that letrozole run. That’s amazing. Sending you a big hug I know how these “new” developments make our knees shake. Deep cleansing breaths in jasmine fragranced winds.
Tany
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BevJen— joining everyone in hoping TM increase is due to viruses
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