Ibrance (Palbociclib)
Comments
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Jen, I got my port in July 2014. Still have it. It is used for monthly blood draws and all IV things like contrast and Pet scan radioactive stuff. It is a power port. My veins are really bad. I will never have it taken out unless forced. My first MO said five years. The IR who put it in said at least ten, unless it stops working. He is the best. He did several thoracentises and my lung biopsy. We got close. He burned out and now just reads scans in Santa Fe. Probably read one of Z's.
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No port here as I was DXd de novo and haven't had chemo yet. Not looking forward to the next set of scans/bloodwork all in one day with just one decent vein...oh well.
I still miss Z and think of her often. Hiking Sandia Peak and sitting on the rocks along the trail, discussing "life" with her, has been one of the highlights of my cancer experience. The friendships we find here are more valuable that I would have guessed at the start.
Hope you all have a pain free day!
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I still have my Port--Power Port. We thought I was Stage 2 at first and had it placed to start IV chemo. We gave chemo thru it for 2 treatments and then we found the MBC. Since then, I get it flushed monthly when I am scheduled for my Lupron injection. I get blood draws in arm--my veins are good. I asked MO about getting it removed, but she said No. Said we may need the IV chemo again and then it will already be there and ready. I am 2 1/2 years in, so I have some time yet before "expiration" of Port.
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Had my port since 2012. No intention taking it out. MO agrees, may need again.
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No port as I also was dx stage IV de novo. Going in for scans today...a little anxious.
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Best of luck IntoLight...
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Ibrance Farts and Chemo Port. Anyone else notice an increase in farts from Ibrance and found a relief, foods to avoid or maybe to add/increase (probiotics) ? About Cycle 4, farts increased slightly. Cycle 5, they have increased, and once, messy. My diet is basically the same since before Ibrance, but just eating less, trying to control eating and lose weight (15 pounds since June), mostly eliminating alcohol, and watching added sugar, but still have desert at night, small. I did not use a chemo port in 2016, fearing an increase infection risk. Maybe that was a mistake. January CT, 3 people with 3-4 pokes each, could not get an IV for the dye contrast. Finally an ultrasound guided IV used, which went very smoothly. Lymphadema in R-arm where tumor is. They refused to use left arm where nodes removed but has no swelling. I asked them to call my oncologist for an opionion on whether to use left arm instead, but they would not. Good news on the CT though, tumor seemed to have shrunk from 2.3 PET 5 months prior to 1.1
2009 ER+ left breast. 52 yrs. Lumpectomy, Sentinel node removal, negative. Radiation 6 weeks, tamoxifen 5 years. Dense lumpy left breast, normal right. Acupuncture offered at facility as part of integrative medicine. It really helped with anxiety/stress during radiation treatment.
2016 ER+ left breast. Probably a new cancer, but unknown. 4 rounds TC Aug-Oct 2016, Bi-lateral (my choice) Nov 2016, no reconstruction. 2 sentinel nodes remove, negative. Cold Capping using Chemo Cold Caps (DIGNICAP not available). Anastrozole 1 mg starting May 2017. Joint issues noticed immediately. Stopped Anastrozole after 3-4 months due to joint stiffness in. After several months of no AIs, fingers were feeling better. Started tamoxifen March 2018
10/2018 noticed stiffness and some trigger finger again. Was eating meat a lot more (daily) than normal. Usually 1-2 /wk. Have cut way back on the meat, seems to help, but one finger still very prone to trigger finger. Trigger finger seemed to be getting better, but now 4/2019 seems worse, is it the break from added turmeric to meals?
6/18/2019. Swelling in R-arm, opposite side from where lymph nodes removed. Could have been swelling earlier but wearing long sleeves. Trip to urgent care. They did ultrasound, concerned that there might be a clot, there was not. Started seeing lymphatic therapist Stopped seeing lymphatic therapist early October. She did not think it would help until tumor removed/chemo'd/radiated into oblivion.
8/2019 CT, Breast/chest , neck/thyroid ultra sound. 9/2019 DR ordered biopsy, said it could be lymphoma, cancer, benign lymphatic. Biopsy R-axilla. Cancer. Genetic test showed no known markers (20+ looked for)
9/29/2019 PET scan, no indication of spread. Arimidex and Ibrance prescribed to shrink tumor prior to surgery.
10/2019 – Stopped Tamoxifen. Started Arimidex and Ibrance. Brand name Arimidex so far does not seem to have the SEs that generics did, but stiff/trigger finger on left middle finger returned.
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Intolight, the longer we go, the harder it gets. But I just had a good scan and I'll be four years in March. I said after that one (very high anxiety) that it can't keep getting worse because I am already maxed out. Now, I'm going to let it go back down. And ask more questions. That helped last time. When do you get results?
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IntoLight- Scans tomorrow for me too -- CT and bone scan. Kinda nervous. CT in Oct showed slight increase in size of liver met, but PET in Nov showed no uptake. "The longer we go the harder it gets"-- Jaycee says. Yes I can understand that. When is my time for progression? When will the Ibrance fail? Starting cycle 27 tomorrow.
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BlueGirl... Yes, farts indeed increase with Ibrance. GasX helps when they are uncomfortable or I need to be discreet. They have actually improved for me with time.
Had my scan with no challenges. Usually I hear in about four days and receive a link so I can see them, but my MO appt is not until the 20th. That is an unusual gap but couldn't be helped. She is good to call so hopefully not a long wait.
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I still have my port from 2010. It's used for labs every 3 weeks and scans every three months. Hanging onto it figuring one day it will be used for chemo. Everyone has a hard time finding my veins so, for me, it saves a lot of painful sticks!
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Wow to the port stories! I had a portocath for a year 2007/2008 - it was a very new thing in the UK then and had really only been used on children with Cistic Fibrosis. It was fitted over my rib cage on the left ( my surgery was all on the right ) and my plastic surgeon made a big thing about it not being fitted in my chest as she’d just spent 8 hours reconstructing my breast and cleavage and she was “damned if a 2 inch scar was put in over all that work”. I loved her to bits!
I did feel a bit like the princessand the pea in bed though. I’ll be pushing to have another fitted if need be as my veins are also noted as being pretty crap!
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This whole port issue is one I’ve struggled with. My port was removed when I had my mastectomy April 2019 by my choice, I just wanted the chemo memories to be gone and I thought removing the port would help with that, then I learned I metastatized a month later and thought uh no, did I make a mistake. My port once healed was comfortable and the IR who put it in put it down enough it wasn’t sticking out too much. It was more a mental thing for reasoning for why I had it removed,I hated what it represented. I use my veins now for Zometa and blood. I hate the smell of saline so bad I don’t think I could handle port flushes again, but then I worry since I only have left arm available to me if I’ll ruin my good vein and then have to get a port again. Sometimes I wish I kept it, other times I’m happy to not have it, kept getting stuck. I’m enjoying reading others port stories.
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good evening friends!
Intolight so glad your scans went without a hitch. Now the waiting...here by your side, please feel free to come share anything you need to. We all understand the anxiety.
Thank you all for your good thoughts and prayers! They worked! I turned a corner today and finally was able to stomach some food. First food since Friday night. Whew! What a relief! I have an appointment with a GI specialist on Monday to follow up. No more naproxen for me! Gastritis is the pits!!
With so much love and gratitude,
Philly
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philly - happy you turned the corner and are doing better now.
Into- happy the scans went well. Hoping for a good report!
I took my port out after treatment in 2012. Sometimes I wish I still had it. Debating if I should get one put back in since my veins are poop. But waiting until it is absolutely necessary. Wish it wasn’t so high on the chest where everyone can see it.
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Woo hoo on turning a corner philly!
Intolight - glad scans went well, hoping for good reports!
Waiting is hard, hoping days fly by for you so you can get your answers quickly. 0 -
Intolight, I'm linking arms with you and others awaiting scan reports! I had my PET yesterday and get results on Monday, a bit longer than I usually have to wait.
I've been on Lynparza for 3 months, first on the highest dose, then reduced due to daily vomiting and something beyond fatigue, then with a break for a deadly sinus infection with round-the-clock coughing! (Thank Heavens for Tessalon Perles or I would just as soon have given up the ghost.) Such misery! But it's gone and I celebrate not coughing each day. God is good!
Even if my scans are improved I don't think Lynparza will be the drug for me, which is disappointing since it had such potential with this BRCA mutation. Maybe I'll rejoin the Ibrance Dance! Woohoo!
Whatever my results, I've decided all by myself to take February off any treatment. I'm going to make art and be sure I get to see my granddaughter perform a solo in her school's Spring Concert. We were in a joint art show last week and I had to miss the reception which bummed me out. I've decided to have a Quality of Life Month where nothing gets in the way. (I could re-name it a Non-Upchuck Month since I haven't had one of those in three years!) Whatever!
I continue to pray for all of you (LovefromPhilly, so happy for your recovery) and celebrate that we're still here and that the world of MBC inches closer to a cure everyday! I keep seeing articles about the potential for some amazing new meds that only kill cancer cells while leaving the good ones alone. (I was around when the cure for polio turned out to be a simple thing that only took minutes. I'm a believer!)
Much love from PatGMcFebruary!!
From the annual Incognito Art Show which raised funds for educational programs at the Memphis Botanic Garden:
Fifteen year old Lainey's lovely "I Dreamed There Was No War"
and my crazy "The Rodeo Queen + Pet in a Parade on a Tuesday / Roadie Done for the Day" from the "Home, Home on the Strange Series"
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BlueGirlRedState, as for the increased gas, also think about your Letrozole. Different brands of the generic contain different fillers and colors, maybe you're reacting to that. My pharmacy switched me to Breckenridge one month, and I had awful gas and pounding headaches. The next month, I requested a switch back to Accord, and I've been fine since then. I am now in their system as requiring the Accord, and they special order it for me.
I had a port installed when my former, incompetent, oncologist first saw me, before he got any scan results back. First PET scan showed the met to spine, so I was Stage 4 de novo; therefore, no chemo. I asked my amazing, current, oncologist if I needed to keep the port, and she said no. I had it removed immediately - I hated it. I felt every inch of it, and it stuck out so far on my neck, I couldn't hep staring at it every time I looked in the mirror. The fact that it was installed by the idiot that told me there was nothing they could do for me, helped make up my mind. And the idea of a monthly flush, just in case I "might" need it some day, didn't appeal to me. If I do ever need one, I'll get one then.
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Need pocket duty today. I go for my CT and bone scans. Just not wanting to do it today. Nervous. No one understands like you all. Feeling alone.
Philly- Woohoo for feeling better. Take care.
Into- Thinking of you as you wait.
Pat- You are soooo talented !!! Beautiful. My doc mentioned a PARP would be next for me due to BRCA mutation. We will see. I kinda want to try Ibrance with Faslodex next. Sounds like Lynparza was rough for you. Praying for good PET results for you.
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Candy,
Good luck today. We all hate scan days, but we're all here to support you.
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Pat,
So good to see you here. Sorry that Lynparza has been such a rough drug for you, and hoping that your scans are all good. And you are a wise woman! Wanting to feel good for a month and taking a med break seems quite sensible, given your medication and other issues of late. The art is amazing!
Philly,
Glad that you are back home and feeling better. Wow. That was something else. I'm ready to throw out my naproxen!
Into the Light,
Good luck on your scan results. We are thinking of you.
And everyone else -- this is such a supportive place. Thanks to all of you for worrying about all of us.
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Pat,
So good to hear from you. I always enjoy reading your positive posts. Love your art!
Candy, Count me in your pockets today. Hoping for the best.
Good luck to those waiting one scan results.
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Philly...so happy you're starting to feel better!
Candy...thoughts and prayers for you today.
Pat...beautiful artwork!
IntoLight...thoughts and prayers for you as well.
To all the Ibrance users...hail to the 'muffins' (farts)!
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Pat, so good to hear from you, and amazing art as always. I love Lainey's "dream" piece and your crazy art. Miss you here! So sorry you are struggling but applaud your decision.
Candy, carrying you in my prayers today.
Philly, so glad you are improving--what an ordeal!
Never had a port but keep waiting for my over-used veins to fail. They keep using the same ones!
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Candy I am in your pocket!! I am at MO myself for blood/zometa in a couple hours
Tonight, its margarita/sangira night
Tomorrow morning, muffins will be cut....
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Philly, I have gastritis. I've had it for years. I never had a severe attack like you had, though. I just had this pretty bad gnawing pain in my upper abdomen and finally went to my GI doctor. He did a upper endoscopy. Lots of inflammation in upper and lower stomach. I was coming out of sedation and he said Prilosec. That's all I remember. I resisted for a few years but finally tried it. It works for me. The problem is the dosage they sell OTC is 20 mg. That was too much for me after the first little while. GI doctor gave me a script for 10 mg. Prilosec (generic). I took one of those every morning for several years. Then, when I thought I might survive, I tried not taking it. I do mostly ok without it but it flares up at times, mostly depending on what eat. Tomato products are bad for me. The generic can be bought on Amazon but only at the 20 mg. dose. They are solid so maybe they can be cut in half. I haven't tried that. My last flare took several weeks of 20 mg. (bought at Amazon) to get under control. I keep both doses on hand at all times. Some people like other products besides Prilosec (there are several) but omeprazole (that's the generic, finally looked it up) works for me.
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Philly, I also take prilosec 10 mg (omeprazole) everyday at my MO's prescription. It is the only thing that works for me and I can't miss even 2 days in a row. She monitors me, but says to keep taking it as it is better than the alternative. We tried Pepcid, but it works differently and doesn't work for me.
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Thanks to all for the pocket duty.
The scans are done and now the wait. I don't know why, but I seemed more nervous with todays scans. Dreaded them more. Usually we do the CT only. This time my MO ordered the bone scan too. So started the day with the bone scan nuclear med dye being injected. Then off to drink the CT contrast. Then after 1 hour did the CT. Then back to do the bone scan. Long day. By the time was done had a dull headache from not eating since 5 pm last night and by now it was 1pm. Got home and felt exhausted from the nerves.
Appointment with MO is Feb 17, but I hope to hear results before that.
Thanks again to all here. We understand where others in our lives just don't get it.
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Candy, glad you’re done and back home. I hope your report comes soon, with all still good!! I agree it’s a big help to have everyone here who understands how we feel at scan time.
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I just started Ibrance on Monday. I have a short trip planned for this weekend and a 3 week cruise booked starting at the end of this month. If you had noticeable side effects, when did they start? Want to be prepared and bring whatever meds may be needed! Thanks...Linda
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