Ibrance (Palbociclib)
Comments
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Karen, screwy was Divine's term. She thought what her doctor said was screwy. I did, too. Hope she is doing ok. I need to do a quick stalk.
Finally called MO (again) to get results of Keystone Pet. Still very small growth of one lung nodule and no tx change. My cancer seems to be sorta like me: lazy.
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Hi all.
Holly- Woohoo on the NED scan !!!!!!!!!!
mshar- Praying for a good result for you. As Pat said, with it being Friday that may be the reason you didn't see results yet. Gotta love the weekends, right. Hoping your weekend goes good and fast so you can get results Monday.
Busy day for me. Ready for bedtime. Had Xgeva and Lupron injections today. Xgeva hurt--nurse said she didn't let it warm like she normally would, just got it out of frig. But woohoo my Port let us draw blood, sometimes it is stubborn and we cannot get blood. The infusion center was very busy today. Then I went to a funeral--lady from church and was 92 years old. Then errands. Tomorrow resting. Hopefully not too yucky feeling--sometimes after the Xgeva I feel cruddy, but sometimes not.
Hugs to all.
Edited to say-- Sorry Jaycee clicked submit before I said glad the growing is slllooowww. Wish no growth, but good that it is slow and no change in treatment.
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Candy, I'm so glad your port worked which gives me high hopes for mine to behave on Monday.
I hear you on the XGeva! I have about 3 days of sofa time after it, nothing dramatic, just don't feel like myself. I'm fortunate to have had TRAMflap reconstruction which left my belly numb so no discomfort from the shot.
Have a good and restful week-end, Ibrance-and-other-stuff Dancers! Extra hugs to all who lurk!
Love from PatGMc
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happy beautiful Saturday everyone! (At least it is a beautiful day here in Philly!)
I had an “interesting” convo with someone yesterday and would love to hear your thoughts on this:
I was talking with someone about BC, who doesn’t know I have MBC. They shared these ideas:
1. That cancer somehow can be thought of as “can’t sir.” They explained something behind the psychology of this and cancer, but I started spacing out as soon as they started in on this. I think it had something to do with people who have cancer needing to realize that they they need to be able to start saying yes to the things they can do, and not pushing things away and saying no???
2. Then they said that women with BC have issues around over nurturing or being under nurtured - from a psychological perspective.
Thoughts? I felt like no surge of any emotion except slight annoyance and the feeling toward them of, “would you say this if you had cancer yourself?”
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Philly,
I would have had MORE than slight annoyance. I call BS here.
Presumably, this line of reasoning could apply to any serious illness. Again, I call BS.
What is amazing to me is that you managed not to just lose it in talking with this person. WTF.
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Love- typical victim blaming. Especially where women are concerned. We must stop this abuse in its inception. My surgeon kept saying it’s not your fault. I realized that I felt ashamed to have gotten cancer. I had no risk factors - except 5 out of 6 women in my family have had breast cancer. The only one who hasn’t is the non nurturing one. Have your “friend” read “illness as a metaphor “
On another note- are you still listening to the breast cancer podcast with Dr Neil Love
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Love from Philly I hate the accusation that can’t sir is not a disease but a magical occurrence in the over nurturer. Ugh. I also hate the ones where I’m accused of not eating right or something along those lines. One lady tells me that I feel fatigue bc I do too much socializing as if the side effect on the label is for everyone but me. I have refrained from telling people off but I do get salty and abrupt and refuse to let them continue. Does your momma have can’t sir oh no of course not bc she didn’t nurture you.
Jaycee glad to hear your cancer is lazy.
PatgMC thanks for shrugs and hugs. My onc delivers bad news by blowing his cheeks out like a blowfish and slowly letting the air out.
Tanya
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Philly,
That was total BS.
it's disgusting when people blame the person who got cancer.
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i am in total agreement with everyone’s response. It is a form of victim blaming! Ugh!
I swear that one of the benefits or maybe curses of my being on Lexapro is that is has me not get as insanely angry and worked up over things...takes the edge off...so the blessing is I didn’t go apeshit crazy on her and the curse is that I let it slide. However, I should’ve mentioned that this person is a patient that I treat and just sometimes have to let them ramble because I don’t want to get into it.
I guess I’m also getting kinda numb to hearing people make suggestions such as these ones. I work in the field of medicine where people come in with some really kooky ideas.
I’ve had a few friends make similar statements which of course is always mind boggling. I DO NOT allow my friends to get away with such statements.
I think that, unfortunately, in the training I received in Chinese medicine, there’s a ton of major prejudice against conventional medicine. It is almost like a brain washing. Getting dx’ed de novo with MBC after seeing TONS of holistic practitioners who never once suggested I get checked by conventional medicine (with all my complaints and symptoms) really ticks me off.
I have had to find so much balance in my practice and life around all this. What a mental journey!!
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Philly, I totally agree also. And I was someone who got regular conventional checkups and was dxd with MBC de novo with no lumps in breast. The technician saw a shadow under my arm. I guess what I am saying is there is no standard anything with MBC. People ask me what my pre-diagnosis symptoms were and how it was discovered usually because they are scared for themselves. I have no room in my brain for ignorant people who have no empathy. I don't mean to sound harsh or uncaring and know that someday they may need support too. I know I have had to grow in my knowledge of what this dx includes. In the meantime I choose to spend my energy on friends and acquaintances who are sincere, and pray for those of us who are fighting this disease with our every ounce of energy. I also send up extra prayers for those who are struggling through the latest storms and also fighting MBC. I hope you all are safe.
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LovefromPhilly, I thought I had heard it all before your "can't sir" and "nurturing" conversations! People obviously have too much thinking time on their hands! Since you're online I'm guessing you're not in jail for tackling that person to the floor! Good self-control, friend.
This made me think of where the term, "hysterectomy" came from. Women with female problems were thought to be crazy and were diagnosed with "female hysteria". Sometimes they had surgery (which came to be called hysterectomies....get it?) and other times they were placed in institutions.
I'm going to just take a break and try to decide whether my BRCA1 mutation is an over-nurturing one or an under-nurturing one. I'll get back to you.
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Love from PatGMcFurious
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Candy, Jaycee, Philly... good news ladies, if I've picked everyone up properly.
Divine, Pat and Bev Jen and anyone else I've missed ....we so far have saying things are screwy, shrugs and blowing cheeks out when MOs give us news, usually unexpected or bad. Must be hard for them.....but would be interesting to read what every one picks up from their MO body language or just language wise?
Biggest one for me is sitting alone in a waiting room and consultant appears and immediately asked if I had anyone with me...,this has happened twice.... might as well have said the cancer is back right then and there and I did say so at the time... poor guys were just trying to do the right thing but sometimes I think they think we are daft!
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OMGOSH...I THINK my sores are getting better!!!!!! I see the new MO Tuesday...so nervous...worried she's not going to be good.
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Nicole, I love answered prayers! I'm so happy about your mouth sores and will pray the new MO is compassionate and really smart!
Love from PatGMc
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interesting question, Karen.
When the PA walked into the room on Friday she looked like she was upset or very sad. Feelings left from previous patient. She pulled herself together quick enough.
When my bone met was first discovered with an mri to shoulder I went to see 2 oncologists. They didnt know any thing about the extent of the mets. So far just found the one in arm at 7 cm. They each had a look on their face that I interpreted as ' how do I tell this woman to go home and plan her funeral?' Yikes. After tests, at the next visit I chewed them both out for that. They each said I have another 20 years.
Gailmary
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interesting question, Karen.
When the PA walked into the room on Friday she looked like she was upset or very sad. Feelings left from previous patient. She pulled herself together quick enough.
When my bone met was first discovered with an mri to shoulder I went to see 2 oncologists. They didnt know any thing about the extent of the mets. So far just found the one in arm at 7 cm. They each had a look on their face that I interpreted as ' how do I tell this woman to go home and plan her funeral?' Yikes. After tests, at the next visit I chewed them both out for that. They each said I have another 20 years.
Gailmary
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Pat- i would say probably both under and over - that leaves no wiggle room!
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Thanks Pat!!! I am so happy and grateful to you and to everyone for all their input on what to do to help with them and also for all the prayers!!!
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Nicole, I think we all now know everything that could possibly be done for mouth sores. You might want to prepare a list we can post for anyone who suffers with them in the future. You can be our go-to mouth sore girl! What a claim to fame!
Love from PatGMc
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NKB - I had forgotten about Neil Loves BC podcasts there for a while! Thanks for the reminder about them. I fell asleep listening to the latest last night :-)
I had a funny thought about all the can’t sir and over/under-nurturing last night and of course I completely forget it now 😂
But I will sign off as:
Love from your over/under can’t sir anti-not-anti conventional medicine Chinese medicine practitioner,
Philly
(Oh yes! That was the funny thought! My sign-off!)
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Philly,
Thanks for the laugh. I needed that today!
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simone -my pleasure 😃
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PAT I am cracking up at your post!!!
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Take your honors where you can get 'em, Nicole!
Put that on a t-shirt, Love from Philly!
"your over/under can't sir anti-not-anti conventional medicine Chinese medicine practitioner"0 -
Ladies...just FYI I started a new thread called "the do not take list if.." (or something close to that) lol please take a glance at it if you all can. If we can all add on to the list it would be great. It's primarily for Ibrance/Letrozole users.
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HI EVERYONE...Does anyone here have side effects from XGEVA?...Had a shot 2 days ago,and today for awhile pain in jaw..
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Ruthie there is an Xgeva thread you might find a lot of info there actually I think there may be 2 I know I started one. A big side effect of that is hives or allergies/itchy and a lot of people recommend taking Claritan 1 hour before the shot and then for the next 2 days. I broke out in hives bad and now can't take it anymore.
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Ruthie, XGeva causes pain along my rib cage. I know it's the X because I took a month off and the pain went away. Came back after next injection. I used to blame all side effects on Ibrance but I believe the itchy rash is an XGeva thing and lots of the fatigue is from the AI.
Such an adventure, isn't it?
Love from PatGMc
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THANK U...Found the thread.
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THANKS PAT...I AM A 10 YEAR SURVIVOR .with mbc...
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