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Ibrance (Palbociclib)

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Comments

  • jaycee49
    jaycee49 Member Posts: 1,264
    edited April 2018

    For me, vaginal dryness doesn't really feel like anything. BUT, I end up with UTI's, vaginal yeast and bacterial infections. Then, there is burning, itching, discharge and all the usual symptoms of those lovely afflictions. Sex for me has been a use or lose it situation and I've lost it right now. I'm experimenting with various vaginal moisturizers (no topical estrogen for us) and am having some success avoiding UTI's etc. I made a nice spreadsheet of the products I've tried but when I copy and paste a spreadsheet into the forum text box, it always gets all jumbled and unreadable. If anyone knows a solution to this issue, I'd love to hear it. If anyone wants the info I've collected, PM me an email address and I will send you the spreadsheet attached to an email. Even though you may not feel vaginal dryness, your sex partner will. It is quite obvious to them. And if you get as far as vaginal penetration, it will be quite obvious to you, too. The pain is excruciating. Aren't you guys glad I am here? I add such joy to the mix. Sorry about TMI.

    Chris, I love, love, LOVE the dolls.

    Pat, your house is so ... Memphis. I miss living in the Southeast so much.

  • jaycee49
    jaycee49 Member Posts: 1,264
    edited April 2018

    Philly, there are different levels of vaginal dryness. Mine is so far gone now, it is called vaginal atrophy. There is a very good thread called "I want my mo-jo back" and another on UTI's. I read those threads religiously and post whatever info I discover there.

  • ciaci
    ciaci Member Posts: 315
    edited April 2018

    When I was getting the Xgeva shot, I always got it on Day 15, the same day as my bloodwork and Onc appointments. At first, everything happened every month, then onc appointment was changed to every 3 months, now monthly Xgeva has been replaced with twice yearly Prolia - but everything still occurs on Day 15 of the Ibrance cycle.

    I have Blue Cross / Blue Shield private insurance (not through work or government), and never had an issue with them paying.

  • ciaci
    ciaci Member Posts: 315
    edited April 2018

    Oh, and I don't remember who said they led a dull life, but I wanted to point out that my most strenuous activity pre-cancer was hurrying from the couch to the fridge for a snack, to get back before the commercial break ended.

    See my profile picture? ATV-ing in the Nevada Desert, 10 months into this MBC diagnosis. Spent a total of four hours being bounced around at full-throttle, laughing my fool head off. I LOVED it!! Don't know what my next adventure will be, but now I can't wait!

  • intolight
    intolight Member Posts: 2,427
    edited April 2018

    Wow, seems like we have different timing with our meds although to be fair, I am on Zometa and not Xgeva. I get my labs done during my week off (any day during my off week) and I pick up my next meds that same day because I get it all done at the hospital. But I don't start my next cycle until my labs are read by my onc. If she doesn't call, I can start them at regular time. I get my Zometa infusion every 90 days and they make the appointment when I am in for the next infusion. I am sure it all works because so far I have not had any problems requiring time off. For now I appreciate the consistency.

  • Liwi
    Liwi Member Posts: 249
    edited April 2018
    Jaylea - that’s great news on your results! Mine are also good this scan which is after 7 cycles. So relieved, now I can plan trip to East coast to visit my father and sister.


    Jaycee - I have had issues with vaginal dryness causing real and imagined (symptoms but tests don’t reflect) uti’s and vaginal infections. My gynecologist last year told me i had vaginal atrophy which thought sounds like a horrible word for a condition. I’ll pm you to get your spreadsheet.

    I love the pictures of the plants and princesses. I’ve not been good at gardening in past but have been thinking of putting together some pots with herbs that I want to eat.


    I’ve been getting headaches odd and on the past two months. They aren’t particularly painful, just there, usually on my temple and similar to ones I’ve had in the past. My MO didn’t seem too concerned but to let her know if they continue.
  • PatgMc
    PatgMc Member Posts: 1,312
    edited April 2018

    About headaches: Before this last recurrence, one of the things that sent me in for a check-up was headaches which I rarely had throughout my life. A week before my appointment (give or take a few days) I ran out of the Magnesium tablets I had been taking for about 8 months. Guess what? The headaches stopped and it seems they had been caused by the Magnesium. Yep! And they never came back.

    The other thing that sent me to the doctor was new pain in my legs and hips. When the PET/CT showed widespread bone mets I figured that was causing the pain. Nope! I went in for an evaluation from a Physical Therapist who started something called Myofascial Release Therapy. Thirteen treatments and the only pain I had left was in the top of one leg. It has stayed the same even after the bone mets healed and my doctor says he feels sure it's arthritis.

    All this to say that I've learned not to assume each new thing is cancer though that is sometimes hard. I tried taking Zofran for nausea recently, had some headaches and realized Zofran did that to me back in 1994 so I'm back to taking Phenergan (sp?). I pray this will help those of you who worry over new things.

    Have a wonderful Thursday, my fellow Ibrance Dancers (and those of you who have moved on to other dances)!

    Pat G

  • marianelizabeth
    marianelizabeth Member Posts: 1,156
    edited April 2018

    I absolutely cannot keep up with this thread but I do try. MountainLady, NZ is indeed New Zealand and I was there for 4 weeks with family. My husband is a Kiwi and in a few days will be starting to sail home to Victoria, BC. He has done a bit of a cheat as our catamaran is on a ship from Auckland to Tahiti and he and crew of good friend in NZ, our oldest son and his Austrian girlfriend will sail home.

    I had a fall Monday AM and cut open my forehead (tripped into my grandmother's desk in our bedroom) and got 4 stitches plus purple getting worse shiners. I took Edie, the little one I look after often, to the library today and got a few stares. But I do know that we are a tough lot.

    I am going to try to answer some posts here tomorrow. Ashlyn, some interesting results!

    Marian

  • lakewoman
    lakewoman Member Posts: 221
    edited April 2018

    TY once again for personal posts..I so appreciated them all ..I have checked out abbreviations ..so helpful ..Onc I knew but MO had me stymied..old RN that I am.dah!! Still working..on my diagnosis etc ty so for that .And to NJ gal..ty so for sharing about crying and that you would have danced had you known..!! I cried, yes ,as my guy and I opened the package ..I kinda get over things like that fast ...but your post big help ..My folks taught dancing..not good at it..but I will think of something ha!! Speaking of my folks.. My mom is 101 in nursing home going to see her today..Dementia yes but even with bad eyes she still recognizes us.!!! aAcompassionate RN writer /singer...yes ,dancer makes her smile when he does a dance for her..My guy driving since I started Ibrance yesterday.chemo pharmacist said not to for few days..All enjoy your today's.Love flower photos..17 degrees here.still snow on front lawn and lake still frozen..But a creek to left.opening up..A good sign..my recliner 25 ft from our dock..

  • Ashlyn
    Ashlyn Member Posts: 93
    edited April 2018

    Thanks for all of the headache comments. Hoping Letrozole is the culprit. And yes it’s worse in my off week. I’ve had a head CT tacked on to my April 23 scan. (I don’t do well with MRIs)

    Marian, ouch with your fall! Hope you’re not in much discomfort from that.

    Love seeing how active everyone is here. All the trips planned, art-making, skiing etc. ! Hawaii sounds nice right about now!

  • piggy99
    piggy99 Member Posts: 183
    edited April 2018

    Marian, sorry to hear about your fall - wishing you a speedy recovery!

    Ashlyn, good luck with your April 23rd scan and CT. Hope the headaches are only Letrozole playing with your hormones.

    Love seeing all the flowers and dolls and garden pics.

  • lakewoman
    lakewoman Member Posts: 221
    edited April 2018

    Please I do not want to offend anyone.but this was written by a minister..and perhaps many of you are familiar with her and her book It's Not About The Hair..this excerpt ..Prince and the Gun Oil ..was in Cure magazine..I send it to you Jaycee and any interested others. I too experimented during my arimidex 5 yr stint..and discovered a product.Wondering.am I able to see my past posts from this era??I had a lot of comments on my experiment..One woman saying her husband cried when she responded!!!!lol..another said she thought her hubby was going to take the day off to watch for the UPS truck..!!! Yes the product worked for me and still does!! Now , as you know, WE will see how it works while I am on Letrozole!!!

    https://www.curetoday.com/publications/cure/2009/fall2009/prince-and-the-gun-oil

  • jaycee49
    jaycee49 Member Posts: 1,264
    edited April 2018

    Thanks, Lakewoman. I made the URL into a link so people can click it to go there. I read a little. Looks interesting. I have considered dilators. I'm just soooooooooooo lazy.

    https://www.curetoday.com/publications/cure/2009/fall2009/prince-and-the-gun-oil

  • jaycee49
    jaycee49 Member Posts: 1,264
    edited April 2018

    I read the whole article just now. It is worth a read, even if you don't have this ... problem. It is hilariously funny.

    Thanks again Lakewoman. This may inspire me. You can buy sets of dilators in various sizes to ... work your way up. Shopping in my future. Online.

  • tanya_djamila
    tanya_djamila Member Posts: 1,542
    edited April 2018

    Good afternoon all

    Thank you gum doctor for the beautiful pictures. The tip lips are gorgeous. Nice $20 investment t.

    Tanya

  • Leapfrog
    Leapfrog Member Posts: 406
    edited April 2018

    Well I have to say right here that I think we're all doing amazingly well! Skiing sounds such fun but we don't get snow here. PaGMc as usual you've filled. Us all with your positive energy. Ive beenn seeing some of your artwork on Facebook.. i love it.

    50sgirl good luck with your scan results..

    Blueshine thanks SO much for the encouragement for my wriing.. I have a lot more material to share yet but i fear writing a book would beyond my ability. If anyone has any feedback on the blog or has any thoughts you'd like to contribute feel free to PM. me. We've all had such different experiences and I'd like to reflect that. It's amazing how little the general public understands about MBC and the difference between this and other stages and how much, once they get it, they want to know more.

    Umm I think that's all. My phone won't let me scroll back to check I've said what I want to say to the right person, so I hope I have it right!

  • bigbhome
    bigbhome Member Posts: 721
    edited April 2018

    Thanks so much for the info lakewoman, cracked me up! Good to know tips

  • lakewoman
    lakewoman Member Posts: 221
    edited April 2018

    YW Laughter good for all of us..!!!

  • dorimak
    dorimak Member Posts: 89
    edited April 2018

    Anyone on IBRANCE for over two years? I have been on for just two years for a solitary met under my sternum. My most recent scan has shown something new in a node at the airway to my lung, yet area under sternum is stable. Don't know if this means the IBRANCE is failing, if it's a new met that's not hormone positive, or (please God) not cancer. Waiting to see a pulmonary doctor for evaluation. Blessings to all you ladies (and gents if applicable).

  • Maire67
    Maire67 Member Posts: 418
    edited April 2018

    Lakewoman, that was a laugh out loud article. At least I’m laughing at myself but out loud.

  • intolight
    intolight Member Posts: 2,427
    edited April 2018

    Lakewoman, your article made me laugh, and brought back memories. So...here it goes...this can be your laugh for today...!!!

    When I was engaged, I went to my OB/GYN for birth control and a smear and he noticed I was a little "small." So he brought me a paper sack with something in it. He recommended I use it for awhile. He said it would help me and I could bring it back for a larger size when appropriate. Now, I was raised in a very fundamental home and church, and my OB/GYN was a member of my denomination (but not my church.) I was also a college student living in a dorm. You guessed it...I had to figure out how and when to use it when my roommate was out, and actually use it! All kinds of things went through my mind like should I tell my fiance, and would he approve? (He was a religion major going into the pastorate.) Looking back, I am thankful for a doctor who cared about the whole person. He ended up delivering all 3 of my children, and did my hysterectomy when I needed it. What a life!

  • Kattysmith
    Kattysmith Member Posts: 688
    edited April 2018

    I've had a great run on Ibrance since February 2016, but with some new mets popping up in my liver, it's time to move on to a new protocol. I have nothing but good to say about the two years I've been on it...I've felt really well with no bad side effects. I've been so fortunate. I wish you all the best and hope it is successful for you for a long, long time!

  • georgiabirdgirl
    georgiabirdgirl Member Posts: 28
    edited April 2018

    Hi All,

    Kattysmith- I'm so sorry that Ibrance has stopped working for you. What treatment are they talking about for you next? How did they discover the liver mets? I'm just a few days into taking it, so I'm hoping that I get a couple of years of good results from it too. Good luck and please let us know what protocol they plan for you next!

    I've been enjoying reading everyone's updates. I laughed out loud at the gun oil article. HILARIOUS! Thanks for sharing. I'm really relieved to hear that so many of you don't have all the terrible side effects from Ibrance. I finally was approved and got my medicine on Tuesday. Whoever said they cried, but looking back would have done a happy dance, I thank you. Because instead of feeling dread, I imagined myself a couple of years from now happily taking my expensive pill, knowing how well it works for me. It's a good exercise to practice feeling hopeful. So far so good with these meds. I've had a little bit of stomach upset, but nothing drastic. Fingers crossed that it stays that way. They have started me on 125mg, so time will tell if I can stay with it. I've been busy being a normal harried working mom, and it's glorious. I'm thrilled not to be on the "chemo coaster" schedule. We did manage to go to a sunrise Easter service in the mountains of South Carolina to watch the sun come up, and it was beautiful. We got there in the pitch black, and listened to the choir and the preacher until the sun started to peek over the mountains. Then, as the sun rose, everyone sang "Amazing Grace" together. It was a very moving experience. Thank you for sharing your stories and your inspiring adventures. I've attached a couple of photos of the sunrise service, and one professional photo of the place known as "Pretty Place" so you can see what it looks like without a crowd and in the light of day. - MISSY

    image

    image

    image

  • lakewoman
    lakewoman Member Posts: 221
    edited April 2018

    Okay couple things today LEFT over breast biopsy √

    Small area in mouth under tongue back of lower front teeth that I cant stop touching with my tongue√

    Intolight..ty so very much for your sharing re dildo(As in Prince and the Gun Oil article).my guy said well maybe it was just a vibrator..He got me thinking!! After I stopped laughing ty.!!

    Leapfrog..so enjoyed hearing about your interest in writing..I wrote my first article ( Determined to Heal)for a real magazine Woman Hunter.in 2010...it folded..pun intended..Then I wrote articles for Huntress Life an Online magazine.Publisher wonderful.even sold t-shirts hats etc.Unfortunately he had to give it up..He even published my 2010 article..As you can see by preface to this article he used the wrong picture..I will post that BC article next week if you are not bored..Enjoy and leapfrog ..go for it..!! Best of luck..the creative mind heals ...begins on page 36..I think!!!

    https://issuu.com/ladyhuntermagazine/docs/huntress...

  • 50sgirl
    50sgirl Member Posts: 2,071
    edited April 2018

    I must admit that when I was diagnosed with MBC almost three years ago, I would never have predicted that I would get so many good laughs while reading posts here on these threads. It is so therapeutic. Thank you so much. Oh dear Lakewoman, I will never get that hilarious story out of my mind. There has been so much bad news lately, and I really needed this. IntoLight, It must have been a challenge to find a time to actually take that "something" out of the paper sack and use it in a dorm room.

    Missy, Welcome to our world of Ibrance. I hope you get many years of good results from those expensive pills. I have been taking Ibrance for 20 months and have had a really good response, and I am one of the lucky ones who feels great. Your pictures from the sunrise service are beautiful. What a serene setting to start a special day. Thank you for posting them.

    Kattysmith, Good luck with your new treatment protocol. I hope you get as good a response from you new treatment plan as you did from Ibrance and Femera (and for as long or longer). Please stay in touch with those of us on this thread.

    Dorimak, I hope that the new node in your airway is benign, but if it is not, there are many other treatments available. I know it can be frightening to face the possibility of progression. Our minds always seem to imagine the worst. Do you know how soon you will se a pulmonary specialist? I realize that the waiting is difficult. Once you find out what is going on, you will find out what is next. Let us know what happens.

    Hugs and prayers to everyone, Lynne



  • MountainLady
    MountainLady Member Posts: 51
    edited April 2018

    Such an amazing group of women! PatgMc, Thereishopr4us, Blueshine--thank you all for the words of encouragement. So glad to see that you all are traveling and skiing. I have a 16 year old daughter and she keeps me busy. After being in remission for 6 1/2 years, it was so hard to hear that Cancer had returned. This is my first cycle of Ibrance (100mg). I have been tired and white blood count was low after 2 weeks (2.5). I get my blood tested again Monday after the 3rd week to see if it's fallen more. I'm wondering if the Doc will lower the mg dose if the count is to low. Other side affects I've had are constipation and a painful mouth sore. I hope that I will adjust as time goes on. Do any of you ladies have suggestions for any of this?

    I'm happy to hear that many of you have done so well on Ibrance. It gives me hope!

  • georgiabirdgirl
    georgiabirdgirl Member Posts: 28
    edited April 2018

    mountainlady-

    I don’t have constipation as a side effect of Ibrance/Femara (so far)but I did with the Gemzar/Carboplatin chemo I was on. I started taking a Sennakot daily and it made all the difference. Also, there is a “magic mouth wash” they can prescribe you for the mouth sores. I hope your bloodwork comes back better on your next labs.

    Missy

  • MountainLady
    MountainLady Member Posts: 51
    edited April 2018

    jaycee49 -- A fellow New Mexican! I'm east of Albuquerque in the Mountains. So nice to "meet" you. I enjoyed your article about the Oil Gun. Quite funny. Thanks for posting.

  • MountainLady
    MountainLady Member Posts: 51
    edited April 2018

    Georgiabirdgirl-- thank you for the input! I'm on Ibrance/Faslodex and the nurse thought the Faslodex was actually causing the constipation. Going to try a few things she recommended. Hopefully I'll take care of it.

  • Leapfrog
    Leapfrog Member Posts: 406
    edited April 2018

    This thread is so busy and moves so fast that if I don't check in twice a day, which I don't, I get behind. This time I'm so far behind that I'm not even going to try to but those of you who know me know that I'm always thinking of you girls.

    PatMcG....I think it was you answering a query about headaches. Most of the "oldies" on here know I've been on it for over a year and that I have a lot of skull mets. For the last few months I've had stabbing pains occasionally around the area where I know there are mets, near the temple and in the orbital bone of my left eye. My husband and son assure me that it's stress and that I only get it at a certain part of the Ibrance cycle. Normally I make a note of these things but I haven't with this so I have no way of remembering whether they're right with my foggy memory. I'm sure I had it before my last bone scan at the end of January and I was told it was stable. Has anyone had this experience of stabbing pains? If I'm stressed I usually experience it as a tight band around the temples, not stabbing pains.


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