Ibrance (Palbociclib)
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ladies please help me to understand everything about pet scan. If there are different types, what pet shows that mri or scan don't, how long it takes, apparently it is with FDG injection. I was told that I should eat high protein food a day before test, I don’t know why. Dr google doesn’t know either!
My MO finally ordered a pet scan, after 2 different progressions... It covers skull to thigh... well good for him! What about some other things that might be in other part of body, I mean lower than thigh? It makes me worry, he is careless and simply ignores any symptoms...
seems process of second opinion is longer than what I expected.....Please share your experience xxx
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I-beat-it- I was thinking about you earlier today and what was going on with your second opinion thing. I have only had 2 PET's- one at diagnosis, and one last Sept 2019. My insurance will only do them if they see progression on the routine CT's I do. Your office/ facility where you will have PET should give you info about PET's and the prep for them (high protein and no sugar/carbs 24 hours before test). They can give you a menu guide on what to eat/ what not to eat. Also you cannot eat/drink after midnight the night before the test. They check your blood sugar right before giving the contrast. You have to sit quietly for 1 hour to let the contrast circulate thru the body. Then they put you in a CT machine. Easy, peasy.
A CT shows size. PET shows uptake of the contrast given to show areas of "activity". But this can also be inflammation, not just cancer. So, to me, that is confusing. They rate the uptake by an SUV number. I am not too sure how that is read= what number is considered cancer activity.
I was told that the only thing below thighs is the bones of the legs and a bone scan would cover that area. And brain not covered by PET, so brain MRI would cover that.
Hope others can chime in and give more info.
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I've had 10-15 Pet/CT's. They have all been skull to mid thigh. I eat whatever I want. Just not anything six hours pre test. It is a very easy test. Radioactive stuff injected using my port. Your MO should have given you prep instructions.
MO#2 told me that SUV stands for Silly Useless Values (in her opinion).
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Ladies thank you so much for your quick responses. Jacee49, I like the phrase, how SUV means, good laugh, I really needed it 😂👍🏻
Candy thanks for thinking of me. A round thing- size of a ping pong ball- has been right below my collarbone since May, and recently, I feel pain when I lift up my arm, if I really can lift up my arm. dunno if it is related to that round thing, or cancer related. MO said it is not showing on scan then it is nothing to worry about! I should add, the chest scan I’ve done so far not included collarbone or neck. pet scan Scheduled in 2 weeks but I started stressing now.
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Anyone have an inspiring story about a rise in tumor markers that turned out to be nothing? My wife has had minor elevations over the years, like 10-20% rises, that came and went. Today we got back her latest scan results. No sign of progression, but tumour markers have tripled since the last test 4 months ago. Of course we are worried sick about this mixed message.
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Husband11, I've been wondering how you guys are doing. I don't have a personal story of tumor markers to tell you, just one about why I haven't had them done in decades. When I directed the Flying Colors Network for many years, one of the consistently upsetting situations was people getting tumor marker results. Basically, for most people they were up, down and all around and for the most part, didn't do much but cause upsets.
Yes, for some people they gave good reason to search further for a problem but for most, they just ruined a perfectly good day or week or month.
I pray that you're able to put the numbers aside and get some peace.
Love from PatGMc
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Thank you for the wise words Pat.
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Husband11, there are a lot about TMs, I spent a good time reading about them, I found 2 interesting things: first, cancer cells when start their nasty travel through blood, fortunately, many of them will die before they find a place to grow, but still it shows in TM. second, targeted therapy medications such as ibrance stop certain cancer cells to grow in the tumor, some of those cells enter to blood while they already died but still show in TM. and TMs are not reliable sources alone but along with scans and other stuff can give you some hints sometimes not most of the time. A wise once told me, if those numbers were correct you should have felt it.
Few months back my TMs suddenly jumped up 3ple and more, scans did not show something new, and mri of my spine (big area of Mets) show no more new tumors.
However, My pcp pushed the MO for pet scan though, it is following week..
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I-beat-it,
very interesting info about TMs measuring things in your blood even though they may be dead. Do you by any chance have any references to articles that you've read? I'd also like to take a look at them.
Husband11, I have no words of wisdom here -- I, too, have had some wild fluctuations in my TM numbers, as I've posted here. But I feel fine, except for the effects of Ibrance. As with most of us, it tires me out a lot, and so it's frustrating because sometimes I'm even too tired to take much of a walk (and I feel that exercise is very important in MBC).
Please give our best to your wife, and let us know if you find out anything further.
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Bevjen, I posted one or 2 on denovo thread few weeks ago, I'll look up later see if I saved them somewhere, good reading for you, as like reading.
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I haven't been on here much lately because I have been suffering from what I can only call health concern burnout. Concerns and conflicts relating to Covid 19 have weighed heavily on my wife and I. No conflict between us, but with others, definitely. Its been a very isolating and conflict generating year.
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Today I got to see my actual PET/CT report and it was even better than I thought. That always makes for a good day!
I was so pumped I came home and made headway on my art piece with the Queen doing the splits. I'll give you a sneak peak with some thoughts about it:
"Takin' the Queen's Houseplants Out for a Sunday Spin -
Dummies.....Gotta' Love 'Em"
[Available.]18" x 18" Mixed Media on Gallery Wrapped Canvas
There's something spiritual about crash test dummies…..so much giving with little asked in return……always ready for a ride!
I haven't been entertained by their kind since a collector took the Fair Food on the First Ferris Wheel bunch off to his beach house and I've missed them.
One of these guys was missing his hand when I took the photograph and he's now had reconstructive surgery (a theme around here)!
The Queen and her Corgi have teapots that pour themselves, a McRee invention destined to make me rich. Investors? Anyone?
It's just looking for a name! (Did you miss that the Corgi is also doing the splits?)My favorite parts are the four-leaf clover (as the Queen has been way short on luck lately). I like the very British bunny bathing in a cup-a-tea and his cactus cousins. Oh, and those wild dandelions hanging from the curlicue sky.
And the clown wig.
And the Queen's shoes.
Not to mention her black toenail polish.I'm in serious danger of liking all of it which makes my face hurt.
I hope it make you smile too, my friends!
Happy Thursday![Find Mickey Mouse and win a pony.]
Love from PatGMc
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Saw this on Facebook this morning.
https://l.facebook.com/l.php?u=https%3A%2F%2Fir.at...
Thoughts.....
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Pat,
Congrats on the super good PET report!
And I just love your whimsical art. I wish I had half of your imagination -- wow.
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Pat,
Congrats on your good scan! I love your paintings also. Do you have a website that post paintings for sale?
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Candy I stopped reading when I saw Taxel. I had a severe allergic reaction to that chemo. It looks like they're making it into a tablet.
The painting is intense. So much to gaze upon.
Tanya
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Candy,
If I have to have chemo, I'd rather have it in a pill than an infusion so it seems like a good development. Thanks for sharing.
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Husband, I/we feel for you. It can be exhausting.
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Pat...wonderful news about your PET scan. Also, another beautiful painting!
ibeait...interesting info on the TM's. I never heard that before.
husband11...I understand. Everything can be so mentally exhausting.
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Has anyone noticed different or more severe side effects since starting the new tablets. I've noticed my hair thinning a little more, more diarrhea and a little more fatigue. I also feel like I get chills a little more often. Anyone else?
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I haven’t noticed a change in side effects. I have major hot flashes and have since way before starting meds, so no chills for me. I have the opposite problem of constipation, but that’s also something I had before medication.
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Re: New Ibrance pills
After comments from folks complaining of new side effects from the pills and the difficulty opening them, I asked my specialty pharmacist to keep getting the capsules for me as long as he can. So far, so good!
Love from PatGMc
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Jackie, big fat yes to answer your question. I merely run my fingers through my hair and I'm losing mini clumps of hair. I had eyelash loss and regrowth on the capsules but no hair loss, now I have both on the tablets. Big increase in constipation and dehydration. Also the fatigue has been unbelievable. Debilitating. I've requested a dose reduction to 100mg as the side effects are much stronger on these tablets to me. I thought maybe the pandemic was bringing me down and I'm sure it is, but I didn't have these problems with the hair loss on my head or being stopped up or being dehydrated.
I'm sad but also glad to see someone else is seeing a difference in the tablets SE. Was wondering if anyone else was having them. After 3 cycles on the tablets I feel awful, hoping dose reduction helps me. Finishing cycle 10 at 125mg then moving down to 100mg for cycle 11.
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I’m still on the capsule, hadn’t seen constipation mentioned here. My mind had been going dark places about that. Will see MO next week, will mention it. Good to know. Along with it, I have low grade nausea. Not hungry, the thought of food can be disgusting. Does that sound like se? And tired. The smallest activity can wipe me out. Not sleepy. Tired. Maybe time to drop to 100
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It's entirely possible that the new tablets are going to be better absorbed by some, thus increasing their effective dosage.
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Spookiesmom, yep, you're taking the same Ibrance I'm taking! Fatigue, nausea and constipation have been my companions throughout all these years and I've never taken Ibrance above 100 mg! I've had to learn to be content doing sit-down things since exercising, housecleaning, cooking are no longer in my wheel house. The constipation is handled with Raisin Bran, prunes and pistachio nuts. Nausea is an almost daily thing but if I take Phenergen before bedtime I have much less nausea the next day. If I head out to the doctor I take an under-the-tongue Zofran so I don't throw up on the car ride.
I'm still happy to be here and there's no one I'd trade places with. I pray that you tell the doctor you'll be changing to the lower dose as the quality of your life matters!
Love from PatGMc
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Thanks Pat!!
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Hi Ladies.
Yes to the fatigue- tired not sleepy that hits out of nowhere, constipation- prune juice is my best friend, hair thinning, and nausea (at times, not all the time). And I am on 75mg. Haven't noticed a difference in the tablets versus the capsules though.
I was thinking this morning about something and wanted to get your thoughts....
I am on ovarian suppression with the Lupron. And I am on aromatase inhibitor of Letrozole. So NO hormones traveling in this girl. The hot flashes are horrid. Sweating all over- head to toe. Hair wet. Rolling down back, back of legs, face. Also the "dread" feeling beforehand that we discussed on this Thread (I think it was this Thread) a few pages ago. And even get a little tearful right before a flash. So.... If I wouldn't have gotten cancer and would have just went thru menopause normally in a couple of years (I am turning 50 next month) would I have this feeling with normal menopause????? I do not see 60, 70, 80 year old women with sweaty faces and wet hair. They don't have episodes of tearing up every little bit. And the joint stiffness and aches with the Letrozole. I know you see older women with stiffness, but is that the lack of hormones in them too???
Why do I feel so awful from lack of hormones to stop the cancer, but if I had lack of hormones from nature I wouldn't feel this way??????????
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Candy, I can’t tell what it’s like to go through regular menopause, as I had a partial hysterectomy in 2012, kept my ovaries, and have had horrid hot flashes since. I didn’t have any suppression at that time. I have had horrid hot flashes ever since that haven’t gotten better or worse onIbrance and Letrozole. I have them all day and night and do get that dread feeling before that we talked about. My mother and sister went through menopause the normal route and never had hot flashes.
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Thanks KBL for your quick response to me. Maybe if I had went thru normal menopause I would be one of those with horrid hot flashes. I do not think my mom had them too bad. But I didn't think about asking her when she went thru it and now she has passed and I cannot ask her.
I know the cancer meds are strong, and have side effects. But just wondering about suppressing hormones, whether for cancer benefit or normal lack of hormones due to age. Just thinking if I had lack of hormones due to age would I feel this crappy--- hot flashes, emotional, joint aches.
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