Ibrance (Palbociclib)
Comments
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Snooky, I don't wear my wig often so my care of it is minimal. I do wear a band and it works great for me. Since I still have some hair I don't use any spray. I also comb mine gently and as little as possible.
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Snooky, if you want to DM me your address, I will send you a care kit with shampoo, conditioner, conditioning styling spray, wide tooth comb and whatever else Jon Renau sent me duplicates of when I ordered my items. I'm headed out of town on Friday for a couple of days but could drop it at the post office tomorrow if you DM today. I've been hoping to get this out of my closet and into a good home. It's all brand new.
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Bless you Jen, yes sending info right away!!
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snooky, I almost laughed out loud at that list of necessities! You don't need any of it, not even the Mason jar! Buy yourself some Daisies to put in that with the money you're about to save!
I put the wig in a mixing bowl with some regular old shampoo and just squeeze it for a bit. I rinse it a bunch and then kind of wring out the moisture. I run the brush through it and hang it over the shower nozzle overnight to dry, then brush it with the same old brush I used when I grew my own hair. I shake it and I'm good to go!
You don't need that band that squeezes your brain. If the wig feels too loose, tighten the Velcro at the base of it. It's not going to fly off and if it did, you'd just have a moment of levity! If it worries you, do get some of Wandering's Roll-On Body Adhesive, which I have to admit gave me a moment of levity just because of the name!
Forget that "head sock" thing. People without estrogen do not need hot head socks! Do they think we're crazy?!
The next thing you have to do is park that wig on your head and send us a picture of your beautiful self!
Love and money-saving from PatGMc
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Oh, God love you Pat!!! I knew you'd give me the straight low down. I'm all about saving money. You have a good day. You sure have me laughting. Snooky
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snooky, my husband just reminded me of a wig story from back when I first went through chemo.
I wore my wig for the first time to a business meeting in Chicago in 1996, back in the days when we used overhead projectors. I was operating one at the head of the boardroom table and all eyes were on little ole me.
One of our salesmen got up to go to the rest room and came around behind me where he tripped on the projector cord and reached out to steady himself. My head was all he had!!
I felt the wig slide to the side, leaving me with half my bangs over my ear.
He left the room and I don't remember if he ever came back.
No one said a word.
The meeting continued.
(If I'd only had Roll-On Body Adhesive.)
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laughing out loud Pat!!!!!! Thanks for that... Found out something very interesting about myself today. Apparently, I'm a real rule follower like Joyner! Dang, this is a new development. Anyway, the c ancer wig lady told me that I "needed" these things, (in addition to going to a wig salon to have it cut to my face. What???didn't believe that one) so...….I ordered 50 dollars worth of products which I apparently don't need just a half hour before you and Jen'sGotThis answered my question.
With Jen's very gracious offer and your "downhome" advice, I got the courage to call the company and asked ...ummmm can I cancel that order??? Didn't really expect them to say sure, it hasn't been sent out and your credit card has not been charged. God's been taking care of my finances for these couple of months of chemo and thank goodness he does....I'm not all that good at it!
So Jen's got this and Pat, I thank you... Lesson of the day is patience. Ask before you buy... Blessings on the two of you. Dang, I love this community. Snooky
And Pat, your job is to keep me laughing, which you do so well...lol
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snooky, I'm pretty excited to hear what you're going to buy with your savings! I'm glad you have a rule-follower like sweet Joyner to balance out your renegade Memphis friend!
Jensgotthis, your generosity makes me happy today!
I think God is honored every time one of you offers advice or a prayer or shampoo here on this board.
May I ask for your prayers as we finally start the new monthly MBC group I wrote about months ago? It's called "HopeUp! Together We Rise Above MBC". The flyers went to the cancer centers today so we're officially ready to go! I loved how the flyer came together....I mentioned it to my 15 year old granddaughter when she was here. A half hour later she showed me a logo she had drawn on a paper towel. Over the next week she polished it and re-drew it on the computer. My daughter created a flyer using it, Komen had it professionally printed and we're good to go. I'll see if I can post it here. I solicited ideas from you guys some time back and put together a year-long program and will post that for you when it's complete. Komen has decided to sponsor it in Memphis and in Jackson, MS so if you know anyone there with MBC, pass the word.
Love from PatGMc
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Hi Ladies,
You are all stars! From the science/ research, to the sharing of experiences, to the support for scared newbies, as we have all been and still are, and just the downright humour and normalness ( not even sure if that is a word). I very much appreciate you all
Made me laugh with the wig stuff... feel your frustrations and discomfort ... mine from 11 years ago is in a box... we called it Dougal ( from the Magic Roundabout... you need to be UK and of a certain age to get that I suppose.... Google?) I've no intention of wearing it again, especially as I sat opposite a fellow patient a few months ago in clinic wearing exactly the same one, which was a bit weird and she did not look great. 😬 Probably our choices are just pretty rubbish.
Have to say those of you wearing wigs I've seen look just fab!
Best story being my very good friend and neighbour thought I had a sister (which I don't ) who was coming and going from my house and when I wore it on a day he was giving me a lift to treatment and turned up at his door, genuinely thought I was her!🤭 He spoke to me as if I was total stranger, bless him and then freaked when he realised it was actually me! 😱We still laugh about it now. 😂😂
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that’s a hilarious wig story!
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Hi friends, checking in before my first paclitaxel/gemzar infusion tomorrow. I've been reading about good results, so am heading into treatment with high expectations.
Jaycee, sending you a roll call. Please check in when you get a moment.
Sending hugs to all ~
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Jaylea,
Tomorrow I'll be that little voice whispering over your shoulder, "You've got this, girl. You have a good doctor who researched what would give you the best results at this moment in time. Cancer cells, look out! There's a new dance in town!"
Remember that you are loved.
PatGMc
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Thanks for checking on me, Jaylea. I have never had any SEs from Ibrance but after three years, they started. I have most if not all the SEs anyone has ever mentioned here. They come and go in variable ways and it's pretty disconcerting. Last cycle, I quit early but this cycle, I just keep trudging on. (Pat saying how they dance in and out convinced me keep going.) Most days I can function and do all my regular stuff (read, watch TV, computer/phone stuff, tough life, huh?). Unfortunately, yesterday afternoon, my car was bumped in the parking lot of my library. A kid backed into me. Not a lot of damage and he said it was his fault. He told his insurance company that it as his fault. Then his parents got home and things started to change. I'm waiting for the other shoe to drop but I do have his insurance agent as a witness that he said it was his fault. That, at least, has distracted me from my Ibrance issues. All the stories here are good for distraction, too. I'll tell MO about new SEs when I see her April 2. I'm up for scans soon, too. Oh, goody.
I'll be thinking of you tomorrow and hoping for no SEs and great results. Check in as soon as you are up to it.
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Pat,
Can you get them to sponsor it in Nashville? I'd love to attend!!
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Jaylea - praying for you as you meet your miracle drug tomorrow. pat - lots of prayers for your new MBC group to help and support so many in your area.
Snooky - I wore a synthetic wig to work during early stage (I was bald for nearly 2 years) and after 1 bottle of the special shampoo, I started tossing it right in the washing machine. I’d set it back on the styrofoam head wet and it was good as new when it dried. I did have a stylist friend trim it a bit and it made it look much more natural so you might want to reconsider skipping that step. It felt a bit like a helmet prior to the thinning/trim. I gave it away afterward and i know at least 2 additional people we’re able to continue using it for several years so most of those synthetic ones are pretty hardy!
Pat - I was at a work event in Florida that included a fancy dinner on the beach on a breezy night. I remember having to hold onto that damn thing with both hands while trying to eat dinner with a bunch of stuffy execs at my company. I laughed so hard describing the whole thing to my husband!
Love to all, Lauren
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Hope, it's a different affiliate but I'll pass that on. You're a natural for the group! Are you a long time survivor? I spoke at a Komen Survivor Luncheon there many years ago at a cool barn-like event space/restaurant on the outskirts of town. Maybe we met!
Oh, Jaycee, I'm so sorry about the side effects. I know you can count on them passing but it sure gets frustrating at times. I recently had heartburn so bad for a couple of days that discouragement took me over. I think I figured out what happened though. I ran out of Ibrance a day too early this week so I must have forgotten I'd taken the meds one night and gone back for another serving! May I suggest that no one ever do that as it felt like I had swallowed a meteor! Keep your chin up, my friend, and know things will get better.
I love your beach story, Lauren! Don't you imagine the stuffy execs have told that story a time or too as well?! Not sure if it's still out there but I wrote a piece about the time I got "Wiglash" on www.cancer.net some years ago. The piece is called "Keep the Fun in Funeral". I'd love to see all of you sharing your stories out there to cheer up all those new folks wandering the Internet for a bit of hope that life can be fun and "normal" in the midst of this.
Jaycee, that Wiglash was caused by a punk kid driving a giant fancy truck and talking on his cell phone. Multi-car pileup on the busiest road in Memphis during rush hour! His father came to the scene, saw all those wrecked cars and I'm sure his assets flashed in front of his eyes. He went into a screaming fit.
On a side note, I got hit in a parking lot here and my insurance company had to pay for it even though it wasn't my fault. The police said it was a no-fault situation because it was private property. I hope that's not true where you are.
Lauren, I'm putting that wig in the washer tomorrow! No more mixing bowls & shampoo for me! Tide all the way! Thanks for the tip.
Snooky, I agree on the trim from a hairdresser. It does make a difference.
Love from PatGMc
(PS to everyone....I have used up my quota of words for today. Somebody else talk!)
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Hi again trying to add to my diagnosis on profile page..Cant see where I can add my triple negative diagnosis in April and mastectomy in May..help again..Onc appt..Tues.. elevated BP..? letrozole..had bp med upped once already .Same happened with arimidex when I was on that for 5 yrs..
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Geez I already did a lot of my form and nothing here but surgery. ...'crap'pie...oh that's what I'll soon be fishing for..when spring comes.😄.oh you say spring is here..not here in upstate NY..need to vent!!! Plans for family party..Sat. afternoon.2 hr drive south...check weather..I have 10#s of shrimp thawing.. ...😡..Cyper hugs and prayers for all of you ty for being there😄
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Well I deleted word surgery. that didn't even happen..Back to SU and Baylor!!!
oh it happened..!!!word gone
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Well giving u all something to do.Watch and see. Can Sharlene figure this out..??
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Hi, friends, here's the flyer for our new MBC group in Memphis. I'm excited and so proud of my girls for the design.
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Fantastic flyer, Pat and what a great logo your Grand daughter created! So you wrote a book too? How did I miss knowing that? Is there anything you can’t do? :-
Jaycee - I am thinking of you. Hopefully this is just an off month and you’ll be back to ‘better than tolerable’ soon (I remember you describing it that way once). And if it makes you feel any better, I backed into a pole in the parking garage at the hospital. Grrrrrrr. Can’t blame anyone but myself.... and BTW this kid’s dad isn’t going to be able to retract his son’s admission. I can’t stand it when parents try to undo their kid’s mistakes. Double Grrrrrrrr.
Love to all,
Lauren
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Pat, I bet you spoke at Chaffin's Barn and Dinner Theater. It's 15 mins from my house. I'm not a long time survivor, I'm a newbie. MBC dx from the start. Dx last month. Do you know anything about Gilda's Club? They have a MBC support group in town. Just wondered if you know anything about them.
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Hope, when I was looking to start a support center in Memphis, I spoke to the Gilda's Club people. I didn't have the endowment they required so I found a local oncologist who was looking to do the same thing. We started the Flying Colors Cancer Network in 1996 which was a similar program to Gilda's Club and the Wellness Community.
I spoke at several GCs around the country and was always impressed with their good work. The one in Nashville has a really great reputation and I would highly recommend you give it a try. I always tell people to visit a group and if it doesn't lift you up within about a half hour, just pick up your purse and go home. Gilda has lots of fun things going on which you can usually learn about on their website.
I know it must have been so scary to find out right out of the gate that you have MBC. I hope you're being patient with yourself as it takes some time to get your mind wrapped around this. Meeting others at Gilda will make it easier, I promise.
Love from PatGMc
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Oh, Lauren, there is so much I can't do! I can't swim so there will be no Joyner-style boating expeditions for me! I can't cook worth a flip but I do know how to order Chef Shuttle with the best of them! I can't draw on decent eyebrows to save my life! Sad, huh?
I didn't write books. I wrote Unbooks! One is for breast cancer survivors and the other for men and women with all kinds of cancer. They're boxes of cards with the stories of people I met along the way. Back when we had Flying Colors there weren't many hopeful books in our library so I collaborated with my daughter, who did the design and another survivor who had a printing company. It was one of the joys of my life.
Maybe one day I'll do another about all the Dancers who triumphed over MBC when statistics told us we wouldn't!! I might call it "Too Old to Die Young"...what do you think?!
Love from PatGMc
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Pat - Count me in!! That’s such a cool concept. And your title is absolutely perfect!!
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Lauren, then again "Too Tired to Die Young" might be more appropriate!
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Jaylea, good luck today!!
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Jaylea thinking about you today. Patg love the flyer and encouragement you give us.
Monday having MRI on back and hip to find out about this pain that's going on. I wonder if I need to blame it on Femara...will know soon...can't walk wth a cane.0 -
Jaylea Thinking and praying for you today. I just had my 5th taxol and am feeling better every week from side effects. I know that your treatment is different but I'm praying that side effects are similar for you. Be strong and go kill those little buggers! HUGS
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