Ibrance (Palbociclib)

dutchiris

I found out I had metastatasis from my scan results on the patient portal, also. I found out on a Sunday morning. Cancer center is not open. I was terrible but at least I didn't have to be a blubbering mess in front of a lot of people, I guess.

LoveFromPhilly

I always ask my MO to call me ASAP with the results. He’s really great about doing so.

The scan reports don’t get loaded to my portal for a couple weeks for some weird reason.

Right now I am awaiting my CA 15.3 result. I have my monthly MO appt tomorrow with the xygeva and Lupron injections.

For some reason my CBC and metabolic panels are always available within 24 hours but right now the TM panel hasn’t posted. Makes me nervous!

dutchiris

My CBC is done in house. My tumor markers have to be sent out and take longer.

LoveFromPhilly

thanks dutchiris. I was figuring that it may take longer. I have to have my labs down out of house due to insurance. I use LabCorp. I wasn’t sure if the TM results take longer or nkt

jaycee49

I found out I was MBC on the portal. My hospital posts all lab type results, like a biopsy. Scan results, they don't. I would like it to be a choice. It bothers me that they withhold my scan results because they think I need a doctor to explain the report. I've read many. I know what they mean. I'd like to be able to read the report BEFORE seeing MO so I have time to formulate my questions. That is not something I can do on the fly. Plus, I learn all kinds of new things about myself. This last one said I had two broken ribs in the past. Nope. About a year ago, it said I had had a hysterectomy. Nope again.

Nkb

the scan results are ready within 2 hours of being done where I go. I make the appointment with my MO firstand then schedule the scan for the day before. All blood work except the TMs go to my portal. My MO emails me the TM result about 2-3 days later. Sometimes she forgets and I let it go- decide I don’t want to know, sometimes I email her and ask for the results.

Karenfizedbo15

We don’t have the option of a portal in Scotland/UK. I think that’s a good thing for new patients...as long as their team are on it information wise.

Once you’re a fair bit down the line I do think the portal would be good, but only for those who understand the whole situation/ picture. It should be possibly filtered?

LaurenInPHX

jaycee - I agree 10000000%. I'm a big girl, I can read a report. They're my records - ridiculous that I am denied access. I want to have time to process and research so I know the questions I want to ask the doctor. The waiting is atrocious enough - don't make me wait longer for some stupid policy. It should absolutely be a choice. (Can you tell I'm getting results tomorrow that I should have known by now? Arrggggh.)

movingsoccermom

I also found out I had MBC from a portal, but I had looked at the PET scan as I left and knew in my heart something was terribly wrong, so the portal just confirmed it. It did allow time to gather myself and get questions together, as like Jaycee, I am not good on the fly. Agreed Lauren!! I have the option of not opening the portal, but it is my body and my results and they should be posted as quickly as possible. I have gotten more results faster from portals than from any of my physicians. Not sure what that says, but I almost prefer it that way.

Hollyli1202

I love having the portal! I did find out through the portal that Ibrance/Faslodex didn't work. I asked for the results not to be released (due to daughter’s birthday). They got released after thank goodness. But at least I could have a good cry and formulate some questions at the appointment the following day. I don’t like that I can’t get the pictures of my scan. I only get the text version.

Pat - when do you go in for your scan

Hollyli1202

movingsoccermom -yay for good results

BLMike - glad you found the prescription

LoveFromPhilly

Jaycee you crack me up!!!! Did you bring these up to your MO and if so, what did they say about it

airlinegal

I had a dry cough and after seeing two different dr's over a period of 2mo the 2nd dr took an X-ray and there was fluid in my lung. When removing the fluid it had cancer cells. That is when I found out MBC. As far as receiving scan results. The scan is on a Fri and I see the Onc on Tues for results. It is nerve racking to wait but I want to be right there with her when she gives me the results. I trust her completely and know she is going to do the best for me no matter what. Labs I can get on a portal and scan results after I see Onc

candy-678

I want to see my results BEFORE I see the doc. I too don't do well on the fly and I want to formulate my questions BEFORE I meet with my MO. If enough time between, I can even post here to get your advise so I can have a knowledgeable discussion with my MO. I too agree that it is OUR bodies and we should definitely have the right to see the results on the portal. All my results flow to the portal except the TM's - they go to an outside lab for analysis. So I have someone in the hospital medical records dept push them over to the portal. My old MO used to get kind of irritated that I saw the results before we talked. He would say " I guess you have already seen ____." And I would say " Of course". And he would just roll his eyes. He moved and handed his practice to my current MO. I guess he told her how I am because she doesn't make a big deal about it. She knows she cannot change me.

I found out about the MBC when I went to the hospital for something else and had a CT done. My previous MO (the one mentioned above) gave me the results. He was great. Sat at the bedside and held my hand and talked with me for an hour. I haven't had progression YET. But I don't think this MO will be that way. I hope I find out before appointment when it happens because I don't think I will have anymore time but the allotted 15 minutes for the appointment.

Moomala

The differences are interesting - I find that with my weekly support group too. Some people want to see their results in the portal as soon as they're released, and some don't like too. I don't mind looking at my labs but the scan results I wait for the doctor. I feel a little less upset if that information comes from a person. I'd love to read it if it were ever to say stable but I haven't been stable yet so I haven't gotten to know what that feels like. MyChart doesn't give me a choice anyway. The imaging center is very clear - the results will be to your doc in four business days and the results will be on your portal in ten business days. So I've certainly seen my MO during that ten days.

jaycee49

Philly, no, I never mentioned the mistakes in my pet report to my MO. I just figure they are like typos, easy to make when overwhelmed by a huge electronic stack of scans to read.

As far as getting results from MO's, I picture Walter White in Breaking Bad sitting in his MO's office surrounded by 3-4 family members, all hanging on the doctor's every word. The doctor perched behind his desk taking his time. The anticipation of the people waiting for his words is so thick, you can see it hanging in the air. I can't give a doctor that kind of power. They may want it (I really think some do) but I'm not giving it.

I can also picture Pat saddling up her high horse as I type. Her MO is a sweetheart.

LoveFromPhilly

gosh if my doc rolled their eyes at me I'd give a good piece of my Philly mind!! That is SO unbelievably inappropriate and horrible bedside manner.

I am at my MO right now for monthly appointment and injections of Lupron and xygeva. I asked about the scans taking a while to upload to the portal. The NP said that they've gotten this question from another patient today already. She didn't know the answer but her theory is that the MO receives the results within 24-48 hours from the person who reads the scans (which is done off-site, btw). Then once the MO signs off and releases the results, they probably take 10 business days (like someone wrote above) to load up to the portal, based on some type of mandatory practice management rule. She said that maybe the MO can override this? More info to Ben revealed!

Pat! Giddyup!!

candy-678

Philly- I did not take offense with the eye roll from my previous MO. He was a sweetheart. He was sooo nice when I had the MBC diagnosis when we thought I was Stage 2. And he always seemed to care and was always talking about researching my situation with his colleagues at other cancer facilities. I hated when he left our area (rural) to go to a big city facility. I just meant he was like "Oh my, this patient is going to be on top of her situation". I am sure most of his clientele in our rural area would probably just say " You are the doctor. I trust you." The last visit I had with him he hugged me and said he didn't have another patient like me. I am a little OCD about stuff. Constant researching. Come to appointments with a sticky note with my questions. Never leave a stone unturned.

Nkb

My MO gives me the scan results in person next day, but, she usually comes in and right away says good news - no small talk and questions first. Then we proceed with the appointment. ( or not so good news) I think the reasoning behind my doc not putting it in the portal is that they want to support you in person. My lab goes to the portal within an hour or two of being drawn. I don’t understand how something could take 10 business days.

LoveFromPhilly

ooooh okay gotcha candy! Sorry for my misinterpretation and thanks for clarifying!

I’m the same way, tons of notes and questions on my iPhone notepad! 😃

Husband11

My wife and I hate any small talk before the test results are revealed.

Chicagoan

I'm in the camp which wants to see the test results prior to my appointment. I have to remind them each time to release them. I don't want to waste a doctor's visit hearing good or bad results for the first time. I need time to process the results on my own and then to formulate my questions.

Jaycee-Funny you mentioned Walter White. I was just thinking about him this morning as I went to get my monthly labs and Xgeva shot-partly because I was finishing up Season 4 of Better Call Saul last night. I really relate to Walter. I don't think I could ever kill anyone but his behavior made sense to me as a stage 4 person. Once Better Call Saul is over, I'd like to watch that series and then Breaking Bad in their entirety again.

jaycee49

Chicago, we've never watched Better Call Saul, although my son tries to talk me into it constantly. We didn't watch Breaking Bad until years after it aired. It was especially fun for me because I lived in Albuquerque for 10+ years where Breaking Bad was shot. I even recognized the house and street where they lived. The problem with the cancer part of the story is that it reinforces common misconceptions about cancer and cancer treatments. Walter would routinely puke his guts out and then just move on to his meth cooking activities like he was fine. So wrong.

LoveFromPhilly

I LOVED Breaking bad! I need to rewatch it, it’s been many many years since I’ve seen it. Funny how cancer changes one’s perspective on these kinds of scenarios seen in film!

I had my monthly MO appointment and Lupron/xygeva shots yesterday and started my 31st? Cycle of Ibrance last night...gosh I can't calculate how many cycles. Jaycee I need your help!! If I started Ibrance in May on 2017, then what cycle am I on?

I am feeling a bit nauseous and foggy post shots. Does anyone else get this way? I vaped a little medical marijuana and it’s helping a teeny bit

NicoleRod

I have another sore in my mouth beginning. This one is weird though...its not outside on the lip it's like just one the edge on the inside of the lip and looks like a white head??? It doesn't itch the way cold sores itch when they are starting...its kind of hurts if my teeth touch it. So I am not sure if it's a canker sore (doesn't really look like that either) or a fever sore or something else??? Am I the only one getting mouth sores on Ibrance??

I am wondering if it is from the sauna?? The thing is the last fever sore I had, I had went to the infrared sauna 3 days in a row straight..and I read on line that sauna can trigger those?? I use to always use the dry sauna at the gym (before Ibrance) and never got a fever sore. So the other day I went in the dry sauna at the gym...and then a few days later...I have this thing now? I know canker sores can come from too much acidic acid...I have been drinking a cup or 2 a day of hot water with lemon...

I just don't know what to think anymore..I mean I am on the lowest dose now of Ibrance...there is no where else to go dose down from here....

Rosie24

Nicole, I'm sorry you keep getting those awful mouth sores. I had the little white dot thing inside my lip that you described a couple days ago but it never really developed then went away. I feel like I've had some mouth sores start to show up but they disappear without real trouble, I'm wondering if they'll get tougher. One thought I had for you is to try calling the Ibrance/Pfizer nurse line. Maybe there is something they know that isn't really out there. I too tried to analyze what I was eating and drinking but never figured anything out. Did you get the magic mouthwash others have mentioned?

JACK5IE

I was getting mouth sores and mucositis after being on Ibrance for 15 months or so. My doctor switched me from 125 mg to 100 mg of Ibrance and it seems to be much better. The magic mouthwash worked for me a little but rinsing with baking soda often seemed to help much more.

jaycee49

Philly, if you started on May 1, 2017, that would be 877 days until today. (There's an app for that: https://www.timeanddate.com/date/duration.html ) Divide that by 28 and you get 31.32 so 31 cycles completed or you didn't start on the first or you took extra time off, etc. That is a cool app and did I mention, I love numbers.

LoveFromPhilly

I have a few friends who are dentists who are against the drinking lemon wjth water because of the acidity factor and the damage to enamel. Nicolerod perhaps giving that and any other acidic foods a break for a while isn't such a bad idea. Ibrance does cause mouthsores (I've had some real awful ones) and it's a known side effect. Our GI tracts include our mouths (and anuses if anyone cares 😂) and the mucosal tissue is simply more sensitive and easily irritated on ibrance.

Also the whole lemon water being good for making a person more “alkaline” is a myth. Just in case you were doing it for the purposes of trying to follow an alkaline cancer diet.

NicoleRod

ladies thank you so much for the replies. Philly I didnt know that was a myth I'm stopping it today. Here o was thinking it was better to have that than 1 cup if decaf coffee.... I cant get the magic mouthwash bc it was 600.00 but I will try the baking soda. My husband wants to pop it!! I'm like heck NO!!!!