Ibrance (Palbociclib)
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Glad to see some organizations are working on making donations possible. Especially with the packaging like the Ibrance tablets comes in, they would be able to tell if it was tampered with, so I think that's a great idea. I hope it does spread and become more widely available!
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Amanda – It sounds like you also have lost range-of motion. Make sure they know this and have a way of supporting that arm so that it out of the way. They had foam block and even taped my arm to it as support. Even then, it was very uncomfortable. Make sure they tell you how to care for your skin during and after. Verbally and in writing. They should do this more than once since things can easily become a blur. Calendula (from marigolds) was recommended vs Aloe. Lidocaine was recommended afterwards for pain, but a pharmacist showed me several products to avoid since they had alcohol or menthol/camphor, one pharmacist suspected that lidocaine without those ingredients would have to be specially made at a compounding pharmacy. Afterwards when I was on the phone, Domeboro was recommended to help draw out the seeping from the burns. Skin care was not addressed, except for use of Calendula, and only when I asked what to use.
Ciaci – I was not metastatic when I started Ibrance and I was not part of a trial when I started it. It was the 3rd recurrence. 2009 left dense breast lumpectomy, radiation, tamoxifen (even though I was already menopausal, oncologist said he had more confidence in tamoxifen); 2016 left again, chemo, bilateral (my choice), Anastrozole for a few months then tamoxifen; 2019 R- Axilla, Ibrance /Arimidex for about a year when it blew up and became metastatic. Stop Ibrance/Arimidex, start Exemestane/Afinitor. Stop Afinitor for 18 rounds radiation. Started Afinitor ½ dose, scalp sores came back, so stopped.
Donating unused and unopened drugs. I hope there can be a way. I have discarded unused portions and even one unopened box. Liability/risk of tampering makes donating very difficult.
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Bluegirl - thanks for that advice, I'm hoping radiation is an option for me. My range of motion is limited & my hand is not usable on that side. Getting to use my arm & hand again would be so fantastic, it's been " out of commission" for 3 months now - I have/had a blood clot in that arm too.
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Hey ladies, I got an update from Jackie. She's been experiencing double vision and was recently admitted to ER (admitted last Tuesday, released that friday ). Lots of tests were done, Something was found that's small in the nerves that's causing the double vision. They are not sure what it is but are also seeing something near C2 and C3. They have said they think there may be cancer in the spinal lining. Based on cancer history will be treated that way. Its been a very stressful time for her and alot of big terminology has been thrown at her, including gamma knife, whole brain radiation and a Ommaya reservoir. She currently is wearing a patch on her bad eye. Her case is being reviewed by the hospital board this Wednesday. Please keep her in prayer as she and her family try to process everything. BTW her Piqray was finally approved TODAY after being off meds 2 months. UNBELIEVABLE.
PS, she is having trouble typing so if you message her might take a bit to respond.
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Snow Drop - as far as the link you shared about how to take Ibrance, the link you shared was for capsules. I believe some of this information is different with the new tablets that came out last year
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Prayers for JACK5IE.
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Cycle # 4 done as of tonight. Have had nausea off and on for the past week. Wondering if I’ll feel better this week off of Ibrance. I’m sure I’ll get the call tomorrow from the pharmacy asking me when they can drop off the next round of pills. How about never? 😉
Keeping everybody in my prayers as we keep on dancing.
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Rabbit, thank you so much for the update on JACK5IE, she is in my heart and prayers for sure.
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Hugs and prayers for Jackie
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Thank you RhosgobelRabbit for the welcome and advice.
SF-CAKES , Rosie Red , Snow-Drop , your experience and suggestions and links I also appreciate.
Nice to have this input from those living this.
I hope & pray for all going thru the challenges life with stage IV MBC brings.
Bootsie
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Prayers for Jack5ie.
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Rabbit, thank you for the update on Jack5ie. Jack5ie - we are all here for you and surround you and your family with prayers!
XOXO
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Rabbit thanks for the update on Jackie. Please let her knows we all wish her for a speedy recovery. I just hate this insurance/ health care system, based on what fact they kept her out of medications for 2 months?? Do they know what does MBC mean??
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Snow-drop, your comment exactly! Do they not understand what MBC is? Having to wait for approval is ridiculous.
My scan showed some new small lung nodules that my doctor doesn't think are cancer (because of where they are, and also that there are two small ones which we've seen from the beginning that remain unchanged). She thinks it's possibly a response to the chest wall radiation I had at the end of last year, or possibly an inflammation response to allergies! Hmmm. I wish so badly for a scan result that says nothing new!
Curious if anyone's experienced lung nodules/inflammation as a result of radiation or (seriously?!) allergies.
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When my husband and I owned our pharmacy, my job as Insurance Manager was to get drug authorizations for customers. They would bring in a script, the insurance company would deny it, and off we'd go. Most of the time, the physicians couldn't be bothered, but even when I had one who was cooperative, it would be difficult to find out what information the insurance company wanted, because sometimes they didn't even know. I was very proud of the fact that our success rate was close to 100%. If there was any way humanly possible to get a drug authorized (and that included begging and pleading, sometimes with tears involved), I got it. I remember once, when a customer had been taking Gleevec (for cancer) for 8 months, his insurance company suddenly decided it was too expensive, and denied it. When I called, they explained the appeals process, which could take sixty days, and he could still be denied. Uhm, no. The patient needs it tomorrow. I spent three hours going back and forth, cajoling, threatening, begging, but guess what? He got his Gleevec the next morning, with a 12-month approval period. We, and our customers, were lucky that I could devote as much time as I needed to solve those types of problems.
In our case, here, we're usually dealing with specialty pharmacies, and they aren't going to go out of their way to do anything. So we become the "insurance manager" for ourselves. I've been lucky and blessed to have great insurance, and only had to call and demand coverage once, for my first PET scan. It's unacceptable, and disgusting, that Jack5ie had to wait for her Piqray.
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Simone, you posted about ringing in your ears. I too have it. When I went off Ibrance for a break, it disappeared. Now it’s back in full force
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To all, like Jack5ie said - it is UNACCEPTABLE that Jack5ie was off treatment for 2 months due to insurance not approving Piqray. My dx of stage IV was delayed for 3 months (3 months of me begging for ct scans) as both PCP and Cancer center refused due to "no real reason and insurance won't cover it". I offered to pay out of pocket - they still refused and patted me on the head as if I was paranoid. Not sure if it really made a difference (spread further) during that 3 months but it is infuriating.
Tinnitus: left ear tinnitus was one of my first symptoms when I started having issues leading up to my stage IV dx. It is still with me all the time, started 7/2019, only in my left ear. ENT and oncologist of course don't think it is necessarily related to the cancer recurring, in left side lymph nodes in my neck and superclavicular nodes but I do. The other left side symptoms resolved within weeks/months of Fulvestrant and Ibrance. If it is a side effect of Ibrance as well, maybe this is why I still have it...I am kind of used to it. It bothers me most when I am trying to sleep so I started sleeping with "ocean sounds" playing - which also helps me sleep with my husband's snoring
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Does anyone have swelling in feet ankles with Ibrance/Faslodex?
I have been having some irregular heart beats (maybe 4X) in past month and this swelling just started few days ago. NO high BP or anything.
Blood sugars under control with diet. No RX
Have appt. with PCP and cardiologist and gastro doctors. Time to make sure nothing else is going on.
Had blood-wk (CBC) Nurse at MO office today wasn't thinking it was meds.
I am anemic...hmmm looks like more tests in store for me.
Keeping everyone in my thoughts as I read the many challenges all are facing.
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Jackie and everyone else struggling are in my thoughts and prayers. I pray things get better for you. Cancer is a crappy disease, both mentally and physically.
Regarding ringing in the ears:. My MO has never heard of that being a SE of ibrance. I still think ibrance has something to do with that. It just happen to start right after starting Ibrance. Anywho, my ENT recommended hearing aids even if though my hearing is good. He said it has been proven to help 65% of people with ringing in the ears. I'm going to give it a try. I have a appointment next week to get fitted so I'll let you know how that works out.
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Bootsie7 - yes, I have swelling feet with Ibrance and Letrozole (both can cause swelling). I started eating 2 Brazil nuts per day and that has really helped. Brazil nuts contain selenium which helps. For a while, I tried to keep my feet propped up whenever I could, but now I don't do that much. And sleeping with my feet on a pillow was difficult and disruptive so I definitely gave that up. Increased water intake and cut back on salty foods are other things that the doctor will suggest. He also suggested compression socks, but the swelling went down before I had a chance to buy any (whew! because those things are not fun).
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Cakes - my lungs showed massive inflammation after AC-T chemo. My rads planning report May 17th 2019 showed my lungs filled with ground glass nodules ( I finished my last chemo March 14th 2019), MO has thought rads (she didn't know i hadn't started yet, she thought i was a few in) caused it and then she thought lung mets to go with the bone mets that were found. But ended up just being really irritated lungs which resolved completely on their own at Oct 2019 scans prior to starting treatments. I know rads can cause irritations. Ibrance itself can cause irritations of the lung. I've had things pop up and disappear on scans. Mostly I think they are just watching to see if things that pop up grow or not or resolve. Lots of watching and waiting sometimes.
Ciaci - God bless you. You probably helped so many people. I agree its truly disgusting what happened in Jackie's case.
Aprilgirl - i see so often people having to fight tooth and nail to be taken seriously. We become our own attorney's arguing our cases further and further up the chain. Thankfully we have each other now to give each other a "Go get 'em! give them hell girl!", but in the beginning it feels pretty darn lonely, its just plain exhausting too sometimes. I'm glad you fought for you. I was off meds besides Zometa from May 17th til end of October 2019 after being just dx. Because ovarian shutdown wouldn't work and I needed to get my ovaries out. That took time. Alot more than anticipated. My mets which were all 1cm and under tripled in size during that time. My MO gave me a big hug when i got through all that waiting and doctor hopping. 2 days after my ovaries came out I was in the chair for Zometa because we stopped that a month before to not possibly get in the way of surgery - 2 weeks after surgery and i was medically cleared I finally got to start Ibrance, but I got to start the AI shortly there after. Its amazing the hoops the majority of us must hop in the medical arena, too many imo.
Bootsie - I would let your MO know about the swollen ankles/feet, During my monthly visit my MO will sometimes run her hands down my calves and look at my ankles. I don't know what she's looking for with that or what it means but seems like its something she wants to know about since she checks. So I'd definitely let your MO know as soon as you can.
RosieRed - edited because i didn't want to forget to congratulate you on racking up completed cycles, you'll be a veteran in no time!. Welcome to the ibrance dance concerning SE, they can change from cycle to cycle and mild out as you go along. Hoping nausea gets better for you, remember you can always go down in dose if you need to, just as effective.
Wicked heat brought on wicked lightening/thunder storms past couple days but today the sun is out, the tempatures much more tolerable and the breezes are plentiful so I'm planning on upping my vitamin d today to a mixed oldies playlist and a bahama mama wine cooler.
Hugs ladies.
Thinking of Jackie, thinking of Jaycee - hating cancer.
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GoKale4320 and RhosglobelRabbit..thank you for responding.
My MO nurse who I saw today just told me to see PCP. (who I called this AM and will see him Monday) Didn't seem to think it was from RX. I see MO on 21st - 2nd Faslodex
and CBC. Appreciate your input.
Bootie7
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We talk about commericals about MBC being frustrating. But I saw this one the other day when I was watching TV. Then I Googled it. The mother died of MBC. This is a tribute to her. This is more "real" for us.
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Candy- I participated in 2 different surveys in the last few months related to this Verzenio commercial. The commercial I was rating was slightly different presumably because the makers took the survey feedback into account.
All - I got caught up today on everyone’s progress. Prayers for Jackie and all who are going through a rough patch. This disease is so incredibly unfair that I must admit I’m a bit teary eyed today.
I’m posting some of my flowers. I hope they put a smile on your faces.
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Thanks for the flowers RK
Tanya
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RK, thank you for the post. Your flowers are beautiful.
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RK, thank for those beautiful flower pics! Yes, I've been teary eyed alot lately too, spending lots of time in funkytown. i just don't know what else to say other than this disease isn't fair.
I have some succulent pictures to share from my kitchen window and newly purchased Hen and Chicks plants in my veggie hanging tower, $6 of happiness ain't bad.
On a lighter note. Have you ever had that moment where ibrance has decided to not hold back the locomotion anymore out of nowhere? Except its in a store you haven't mapped out yet in terms of bathroom location? After turkey trotting around the place and trying to hold in the precurser bowel announcement trumpets you ask an employee who says there aren't any public bathrooms and not in a nice way either.
In my mind, i did this....
Thankfully I did make it home, by pretending I was cemented up with Ibrance but boy, I think I better pre plan a little better next time.
Edited to add: MO appt/blood on friday the 18th. Scans will be scheduled during that appt. Candy, Aprilgirl and I will be scanning around the same time the end of this month. Fingers crossed.
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RhosgobelRabbit, I’m on my third cycle of Ibrance and I’ve been having some bathroom issues. I have diarrhea sometimes and I have had to all of a sudden rush to the bathroom with a sudden urge, once not quite making it. Is this a common side effect? Denise
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D37, Ibrance seems to either constipate the heck outta people, produce dirty Niagara Falls or a combination of both. What dosage are you at? If at 125mg you could ask to go down to 100mg, or even 75mg if you need to. Its still very effective at those doses. Letting myself go too long before going can cause that emergency need to go and that's because i get lazy on making sure i stay on top of constipation. I'd try a 2 prong approach, Try to keep bowels moving regularly and maybe add bulk to diet and drink alot of water (Ibrance can be dehydrating) - if your still struggling definitely ask to reduce dose, might take away that side effect for you.
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Gorgeous flowers in your yard, RK, and love the adirondacks - wish we could all hang out there together, it looks very peaceful. I'd bring snacks, of course.
Rabbit, thank you for sharing that you've had things appear and then disappear again on scans. My MO was really unconcerned about it, but how can I not worry? I'm sorry you've been in a funk, this whole process is so difficult. I find myself crying seemingly out of the blue at times. And I'm glad you made it home in time for the ibrance flow...no public bathroom, wth!
Candy, thank you for sharing that commercial. That felt respectful and real, watching it.
I haven't experienced swelling of my feet or ears ringing, yet. I am always grateful for everyone posting their experiences so I have some idea of what side effects are within the realm of possibility. Aprilgirl, I think I will get one of those ocean sounds machines for the bedroom because that sounds lovely!
I will definitely be in everyone's pocket for upcoming scans. These scans, it seems like they can both save my life and yet kill me (emotionally) with both the waiting and the results.
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