Ibrance (Palbociclib)
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Wandering- I get the UPS tracking number a day after I order the meds so I have a track number all the time. They put a no signature required on the package and the tracking number states it was delivered to my address but 15 mins after it was delivered, I went to get the package and there was no package. I called UPS that night and now it is now under investigation to locate package. The next time I order meds, I am having them shipped to my pharmacy from now on. I am going to call the ONC on Tuesday and see what they can do. The only sorta good thing about this lost meds is I have to wait at least another week b4 I can start the next cycle. Blood counts bottomed out once again. The last time I had to wait 4 weeks before I could start the next cycle. MY ONC says " your body asks very vigorously on this med and it may take awhile to get the right adjustment" And I am on the 75mg.
Jaycee and Sandibeach- I have been so worried about this missing meds and hope they can send me a new package. You both give me hope with your post and I thank you so much. I just don't have the money to replace it.
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Grannax, I'm bummed that this has happened but I know Ibrance is not the only thing working for people. It just wasn't the one for you right now. I'll keep you in my prayers, my friend.
Joyner, I'm so glad your trip is going well. I almost got seasick from your pictures! I've been seasick in the Chicago River, in Pearl Harbor and on a couple of "this ship is so big you couldn't possibly get sick" cruises. Keep having fun!
**For you new-to-Ibrance folks, my cancer was first metastatic in 2012 and I became NED with Taxol/Carboplatin. This time 2 years ago I "sprouted" widespread bone mets and started Arimidex/Ibrance/XGeva. In 3 months I had a remarkable response, then after 6 more months had only healed tissue where the bone mets once were. In June of 2018, I had one lymph node lighting up with a small amount of FDG on the PET/CT scan. The radiologist wonders whether it's actually cancer or just inflammation. I hope this story helps give you the hope I received from others here 2 Septembers ago! (I started on 100mg Ibrance and reduced to 75mg back in the winter. Nausea, indigestion and fatigue are my most consistent side effects. They vary in intensity in the random way only Ibrance can produce!) I will celebrate 25 years as a breast cancer survivor in February of 2019!
I'm down South praying for all of you....for your health, for your families and for you to find joy in the little things.
Love from PatG
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Has anyone used acupuncture for hot flashes? My oncologist has recommended I try it, as my hot flashes are really becoming unbearable. At least 5 or 6 times a day, I get bright red and sweat profusely, and it comes on instantly. All of a sudden, I just feel my face get very hot and wet. It never lasts more than ten minutes, but in those ten minutes I want to rip off all my clothes and/or jump in the pool, and I know I look awful! Once the weather gets cooler, I have a feeling it's going to be so much worse, because I'll be stuck in long sleeves and warmer clothes.
Anyway, my onc. says they've had great success, and everything I've read online says it helps - but I hate needles. You would think I'd be used to them after all these blood draws, and I know the acupuncture needles are even finer than that, but the thought of those needles just sticking in there freaks me out.
If you've used acupuncture for other things, I'd like to hear abut it, too, so it feels more like a normal thing to do, LOL!
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I would like to hear more about acupuncture for hot flashes. I know where you are coming from Ciaci. My face turns red and I sweat EVERYWHERE. Rolls down my back in rivers. Even sweating on the back of my knees. I love fall and winter, always have. But the thought of long sleeves and thick clothes is daunting.
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neogirl I had a problem with my delivery one and my onc gave me a full months supply sample
Tanya
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pat Mgc 25 years is phenomenal survivorship.
Ciaci and candy I use acupuncture and I rarely have any day time flashes still get a few at night but not with the intensity that I had before.
Some of the needles may hurt but some I don’t feel. My doctor also does cupping and moxa for the nausea.
If you’re first trying it ask for a gentle treatment/hot flash treatment only.
I asked what each needle was for, (how annoying lol) but she explained and most importantly I felt better after a couple of treatments.
She also gives me b-12 shots. I share my blood work results with her as well
Tanya
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PatGMc:: I'll pass the 5 year mark on Friday, September 7th. I thought that was pretty good but you certainly give me hope for the future. If I make it to 25 years, I'll be 93. That would certainly be something to look forward to and celebrate. Thanks for the encouragement.
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Ciaci and Candy, I get acupuncture for my hot flashes. I think it helps. When I first started Ibrance, Femara, & Zoladex in February, my hot flashes were out of control - about 30 a day and 5 at night. My face also turns bright red and sweat pours down my face & everywhere! It was so awkward when it happened in public and at work. I started acupuncture treatments in April and I've been regularly having them done a few times a month. I think it really helps. I still have a few mild hot flashes here and there but nothing like before. During treatment she plays light, relaxing spa music. After she places the needles, I usually relax and even take a nap. The needles are only slightly pokey at first but after a few seconds I don't notice them. I also have her place needles to help with fatigue and occasionally for neuropathy, anxiety and tummy issues. It seems to help for those issues but helping with my hot flashes has been the most obvious benefit.
~Kar
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Well Ladies, The case of the Ibrance has been solved. A nice lady that lives about 2 miles down the road from me noticed a white bag in her wooded backyard. She went to see what it was and it was my Ibrance package. She brought it back to me and said I have a package for you but it looks like " Billy the bear" decided he want to check it out first. Yup, a great big muddy bear footprint on the package and teeth marks tried to rip open the package. I guess when he didn't find food in the package, the bear left the package. Looks like this stuff will be shipped to my pharmacy from now on.
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neogirl, good one....I can't take my Ibrance because the bear ate it!
PatG
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WANDERING, Congrats on that 5 year anniversary! When I was first told I had it my only experience with cancer was my mother getting diagnosed and dying in 2 months as they said she would. That's how long I thought I might have. There was no Internet to show hopeful stories and hardly any books, only a few magazine articles. I knew right away that there was something for me to learn that I couldn't learn any other way and I found myself in an ever-growing circle of friends that has extended to this day with all of you. I have been blessed beyond measure and I wouldn't change anything.
I look forward to celebrating with you when you hit the 25 year mark, WANDERING. I'll be pushing 89 years old then so, in case I'm in "the home" and have no Internet access, here's a big Congratulations!!
Much love and wishes for a great cancerversary week!
PatG
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Thanks Pat. My significant other died of bladder cancer in 1984. It was my first specific experience with cancer and a very painful one (still makes me weep to think about it). When I was diagnosed all I could think about was the pain and suffering he went through and still died. I realize I have a different cancer and many improvements have been made since that time. Still the images remain. If we make it to the "home" - my mother's experience was pretty good internet so there is hope for us. Love and prayers. Jackie
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neogirl That's best story I've ever heard about missing Ibranc package. I bet your MO will get a kick out of that one. LOL
Where do you live? Kinda scary to randomly have bears on your front porch stealing your packages!!!! YIKES
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grannax - I am in the white mountains in new Hampshire. Lots of bears and moose hanging around in the mountains.
Im sure my onc will love the missing package story.
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Neogirl.....my husband and I love to watch North Woods Law. You should have called the Fish & Game to catch that bear lol.0
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Neo, truly amazing! Could you still use them?
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The bear ate the ibrance is the best story ever!!!
Tanya
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Joyner- The pills are still usable. Seal was still on. Just the shipping bag was ripped by teeth and stepped on.
Airlinegal- I should have called them. LOL
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this bear story is the BEST!!! Thanks for making me crack up today!!!
I am an acupuncturist and I fully stand behind it to help minimize the side effects of cancer treatments (especially hot flashes, pain and nausea).
It works!! Try it! Just make sure you find someone that you feel comfortable with. I always offer a free 15 minute consultation to any possible patient to make sure it sounds like a good fit.
To be sure to find someone who is licensed and accredited, you can go to the NCCAOM.org website and find a provider near you.
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Seaway thank you so much for the kind words and support! Hope your weekend has gone well!
IntoLinght thank you for the happy dance! I am a terrible dancer so having a proxy is a very good thing for me!
LaurenH seemed like a big drop to me...the onc even had the nurse call to make sure that I checked out the results on my online chart!
JoynerL thank you so much for the kind words!
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Grannax2 I am so sorry to hear about the progression. I pray your new meds will be fiercely effective. I hope you will enjoy your vacation though. Take care of yourself.
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PatG - As a new to Ibrance person thank you so much for sharing you success story! It will be a source of hope for all of us as we face another day and challenge.
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Oh how funny neogirl!
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itdoesntfeelreal, I hope more of your friends here will repeat their stories for you and others who are new. We've done that periodically so, hey, everybody, sing your survival song right here, right now! Hope is a healing thing and you have it to give!
Love from PatG
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Good idea, PatMc.
Mine is not so long but is encouraging. I was diagnosed at age 72 (a frisky, active 72) with MBC after 27 years in remission in Feb 2017. An unrelated CT scan at that time picked up extensive bone mets throughout my skeleton. I had no pain. I was devastated to have the cancer return, when I thought I was "safe", and I was started on Ibrance, Faslodex, and Xgeva right away.
My first scans after 3 mo showed a stable situation with no changes, and I was disappointed. I was on this site shortly after diagnosis, and I was reading that it could take Ibrance 6-8 mo for evidence of improvement to become evident. My second scan (6-7 mo of treatment) showed improvement! Since then, no progression and always either stable or a bit of improvement. Note that it is hard to detect improvement in bone mets, as my mets were sclerotic (healing patches) but definitely there where they had not been before.
I had my first PET scan this May (2018), and my doctor said, "If a doctor reading this scan wasn't already aware of your diagnosis, he wouldn't be able to tell that you had BC in your bones!". He pronounced me NEAD and said that I was one of his "star" patients! We skipped my usual 3-4 mo scans this summer, and my next scans are next month. Fingers crossed
My only side effects are fatigue, and that's bearable. I'll take it for a normal life (so far). Austin and I are off on this boat trip of a lifetime because we want to smell the roses!!
Hugs to all (still no shorts, Pat...:)...
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I'm a newbie to stage 4 but just last year at this time is when the radiologists called from the hospital to tell me that I had nodules in my lungs that they had been watching for a year and that I had even more now and that he suggested that I go see my MO. Horror struck through me. I thought this is it my time on this earth is done. I felt this way until February ( my oncologist was convinced that it wasn't cancer and ordered nothing but finally got into a lung specialist in November who ordered PET) one MO wanted to start me immediately on taxol but my new MO said faslodex and ibrance. I am getting ready to start my 8th cycle and I feel really good. I still work full time as a preschool director and am able to still enjoy doing things I love. Not saying I don't have SE but I am grateful to be able to spend quality time with my family.
I go for my first PET scan since being on ibrance tomorrow and I am feeling quite positive about it. Of course there is always that what if that taunts you but that is why it is nice to have a place like this and wonderful women like you to talk to.
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By the way, I'm finishing by 20th cycle of Ibrance tomorrow, living essentially as a "normal" person! I thought initially that I might well be dead by now! Ibrance has given me a new lease on life, length on this treatment to be determined. Hang in there, newbies!
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I’ve been on Ibrance and letrozole for a year now with few side effects. I’m still quite active - did a 14mile mtn bike ride yesterday. I have a zometa infusion every 3 months and I’m starting to hate those! They cause fatigue, anxiety and now I’m getting tooth pain! I see others are on xgeva - is that easier to take?
Holmes13- sounds like you’re doing great! It’s interesting to read others experiences as they are all different. I have lung Mets as well and when “something”showed up on an X-ray they right away did a biopsy indicating cancer. You didn’t mention that, did you have a chest biopsy? Also I had a PET scan when I was initially diagnosed but now insurance refuses to pay for it and I get CT and bone scans. I think it’s ok though as the MO explained the differences in imaging. And yes bone scans can be hard to read and not great at tracking progression. Sounds like you get good care, just interesting to read differences.
Well off in our camping van today for a fun trip to the OR coast.
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Damnation. I think that I dropped the ball. We're halfway through the Wisconsin to VA trip, and we blasted down the entire length of the Oswego Canal yesterday in one day. I think that I was supposed to wave to someone's friend along the way!!! Seaway or Grannax, was it your friend who lives nearby?
It's SO NICE to be taking a break from cancer....
Hugs to all-
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That was my friend, Joyner. She has been really busy lately. After years with MS. she is finally well enough to work again. She also sings in a big-time choir that went to Florence this summer to perform the Requiem. Then she had throat surgery and they didn't tell her how difficult the recovery would be. Big surprise. We all deal with these medical people. So she might have been too busy to wave but my two friends were geographically close (maybe psychically close) for a short while and that's good enough for me.
Enjoy your break from cancer.
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