Ibrance (Palbociclib)
Comments
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Karen, Ugh, 12 weeks sounds like a long time. We may have something similar in the end but I haven’t been given a length of time by anyone. I assume you were told this by your MO? Well, a lot of us will definitely be here checking in, so visit here often! Some in my area are expecting to be under “lockdown” soon because cases are growing, butter now it’s just a recommendation to stay home. I have 2 more rads treatments to go, scans next week, and MO visit the next week, so we’ll see if they all go on as planned.
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Karen- Didn't you have a scan last week? Any news, or did I miss it?
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Karen, I'm looking forward to seeing pictures of your well-tended garden! You folks know how to do that better than anyone. (The Secret Garden I always go to in my mind is Scottish and so lovely! I've visited often in recent weeks, especially during the Cyber Knife procedure.)
I kind of laugh about my friends who are panicked about isolating. I've pretty much been in this house for 3 years except for doctor visits and maybe one outing a month. I've made some fun art and read some good books while keeping in touch with friends online so it's all good.
If any of you are looking for good books that were written for Middle Graders but many adults have enjoyed, you might order Sway or Circa Now by Amber McRee Turner, published by Disney. You can buy them Used on Amazon for very little. She's my daughter and I'm biased but if you're looking for clean well-written entertainment, you'll like these. (Amber's not making money off these so please don't see this as solicitation. They're out of print.)
Love from PatGMcProud
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Great news husband!
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Karen - sorry, I asked this question in the Coronavirus thread, but did your MO or hospital or GP or someone have you lock down?
PatM - I've been stuck at home since November and was just starting to go out again! We are all supposed to be WFH for 12 weeks now apparently and people were already complaining by yesterday afternoon about the impact to their mental health. I went nuts WEEKS ago before realizing the key is to break up the day and get screen breaks. Even doing the dishes and sitting out in the sun helps!
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Great news, husband11!
Pat - so happy to hear the injection was less painful!
Curious - fantastic post, thanks for sharing this info!
Perky2020- welcome! I am also in the Seattle area.
Roseo - good tip on the peroxide solution, I will try this!
Karenfize- we are in lockdown and also canceled a trip to mexico at the end of March. I am supposed to visit my parents in Palm Springs in early April but that is up in the air.
It is great that airlines etc are flexible with cancellations. Stay home and stay healthy!
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I'm so confused. My wife and I saw her MO today. As I reported previously, her scan from February reported: "MULTIPLE, SOLID NODULES SUSPICIOUS FOR METASTATIC DISEASE ARE MILDLY LARGER......" The report then listed a dozen or so nodules that the radiologist said had all had increased in size. Her MO stated that no nodules had really increased more than 3mm so this could be scanning or measurement errors. Well, one nodule had gone from 7x4mm to 10x8mm. That seems like it's more than 3mm to me.
Regardless, her MO said they really consider that stable, but want to do another scan at the end of next month to verify that things truly are stable. I know 3mm is really "only" one tenth of an inch, but we're both numbers folks and it seems like growth is growth. It's just unclear to us whether her treatment is still working or not. I guess we just have to be patient for another month until another scan. Rant over.
Karen -- My wife and I had a bucket list trip to Charleston SC scheduled for next week that we cancelled due to the Coronavirus. Even with her immune system being at it's (relative) highest, we felt it just wasn't worth the risk.
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BLMike, they did a study where they has the same patient scanned twice in succession. They did this for a group of patients. Then without telling the radiologist, they had them give measurements of the size of the tumors. The range of measurement for the tumors varied on some 1-3 mm between two near simultaneous scans. So, clearly an apparent change within that range could simply be an error. I can understand your anxiety about the one that went from 7x4 to 10x8. Still within the margin for error? I guess we have to rely on the oncologist as to whether its clear enough to warrant a change in treatment. This uncertainty is really weighing on a person.
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Thanks Husband11. That does help. One one hand we have a radiologist report saying there's "mild" growth in multiple nodules, and on the other, we have an MO saying, well, I'm not convinced there actually is growth here; let's do nothing for another month until we do another scan to hopefully see what's REALLY going on. Yes, that's certaining weighing.
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cross posting:
Hi everyone! I am sharing something I posted on Facebook but can't figure out how to copy and paste it here, so sharing a photo of my share instead. Any input or recommendations Greatly appreciated!! Love Philly
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Sondra, no word from my team as yet, expecting that next week as they contact all of us individually re arrangements for our appointments, bloods etc. Following scottish gov guidelines which strongly state all in cancer patients in chemotherapy to lock down.
However, I agree with Pat... much of my life is already in isolation... I’ve been wary of big crowds and people with sneezes and coughs since my primary 12 years ago. We don’t eat out much or go to many events so no biggie there.
We are lucky in that we have SPACE here as not highly populated as London is, it’s easy to get out with the dog to walk and meet hardly anyone. Take a 10 min drive and you can be in the wilds.... amazing so close to Glasgow city!
I’ll now FaceTime/ Skype/phone my friends, make sure by dad is supplied with what he needs come hook or by crook - he chooses to isolate himself anyway so that will be fine.
We’ll manage, as long as I don’t actually get the thing!
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Philly: When my counts were low I was told to continue with the letrozole. So are you at least allowed to take it?
Did you ever think about receiving a 2nd opinion? You have so many excellent facilities or NCI near you. In previous posts you mentioned liking your medical team. Understandably its a pain obtaining a second opinion. At least in my situation the nurse navigator did all the work except me signing a ROI. Having the second opinion gave me reassurance but also a back up plan if something goes "sour" with my current facility. I'm surprised you don't have an appointment with the Radiation Oncologist for the bone met? You could be doing this now while you are waiting the MO in April. Take care and harness this mental energy in a fighting plan....
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tinkerbell thank you so much for your response! I just emailed my oncology departments social worker, who is super lovely. I hopefully will chat with her and get some feedback.
I DO love my team but wonder about my MO, who has been in practice for 30 years, being burnt out. He is so lovely and smart. But I don’t know, I feel like I am receiving “benign neglect” here.
I am going to make empowered decisions and moves!! 👊🏽👊🏽👊🏽
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Curious - Do you know anything about this:
ARID1A p.Q588* (26% mutant allele). This mutation is predicted to truncate and inactivate the ARID1A gene product. ARID1A is recruited to DNA double strand breaks via its interaction with the upstream DNA damage checkpoint kinase ATR. Loss of ARID1A sensitizes cancer cells to PARP inhibitors in vitro. In addition, pre-clinical studies have shown that loss of ARID1A correlates with sensitivity to EZH2 inhibitors.
or this one: PRKAR1A
I finally read my pathology report from last year where they looked for specific genes that had gone awry. Those were two of them.
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Holly- the report says your cancer does not express ARID1A, and therefore should be sensitive to PARP inhibitors like Olaparib. Normally you need to have a BRCA mutant cancer to be considered eligible for that drug, but ARID1A functions similarly to BRCA and so it creates the same kind of molecular defect.
For the other one, that is a subunit of Protein Kinase A, which is a tumor suppressor, so when it is mutant or missing, it predisposes cells to transform and undergo metastasis, particularly to the lung. Loss of PKA can cause over-activation of ERK kinases, which is a very active area for clinical trials and drug discovery. An ERK inhibitor would make Everolimus work better too. Anyway, so nothing immediately actionable about that mutation that I know of, but ask your doctor- Good Luck!
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Cross posting update:
Good morning dear friends and Ibrance dancers!
Thank you all so much for your thoughts and advice to my issue that I posted about a couple days ago.
I called and spoke with my MO's office social worker, who is a gem, and I let it out, the tears and frustration. She was so helpful and validating and told me that everything I was experiencing and feeling made perfect sense (which is always helpful to hear that I am not being crazy LOL!). She said she would speak with my MO and low and behold, he did call me later that day and of course I missed the call.
Anyway - he advised that I start back up on the Ibrance on Monday. Imagine if I hadn't been persistent, then I would just be floating in limbo not on any meds until April 1st. I know that these things are slow moving generally speaking (bone mets) but it still got me all worked up that no one was responding. I ALSO do understand that our medical systems are completely going bananas with COVID19. So many people in my area are getting their MO appointments canceled...not their infusions, but regular appointments. I am curious how my appointment will pan out.
I am sending love to everyone. I am going to make a little video soon and will share it on here, so that if anyone is interested can watch.
Love and hugs,
Philly
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Philly,
I am glad that you finally at least got an answer as to what to do in the short term. With all that's going on, waiting until April 1 seems like an eternity. And I'm glad that you found a social worker to convey it to -- that's great.
Weird times we are living in, that's for sure.
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philly, glad you got to talk to someone.
Curious, thank you. I took out the stuff I knew about. Those were the ones I didn't know.
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Hello all! Your fellow gaser, checking in!!
Congrats Husband11!! Great news!!
On cycle 5, 7th day. Saw MO, had blood draw. Tongue sores hung on a bit more the end of last cycle only just healing before start of this one. Wont know if TM's are up or down til Monday/Tuesday, I forgot to say at appt to not tell me if they went up or not again, had too much other stuff I needed to ask etc during my appt time. Zometa is being held for right now, I was due for my every 3 month infusion next month but will be skipping it for now until things calm down with MO's approval.
Philly, I'm glad you were persistent and have a plan now, so glad you had an ear to listen, that's sometimes just what we need, an ear, just to listen and validate.
Just a quick hello to you ladies/gents
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Hello, friends!
I remember when I took that first Ibrance capsule in October, 2016 and I danced with you for 3 years.
Then there was that 3 month break for Lynparza which didn't sit well with me. (That's all I'm saying about that.)
Then a month of nothing except the Cyber Knife as I detoxed.
Tonight I took the first of what I hope will be years of Ibrance. Loading dose of Faslodex Monday, XGeva Wednesday and pretty sure I hear tiny cancer cells screaming and running for their lives.....!
Love from PatGMcMedicalized in March to the tune of about $50,000
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Pat,
Many years of dancing for you and for all of us!
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Hi Pat, I can here those cancer cells screaming all the way up here in Illinois. I pray you continue the dance for years and years.
Love and prayers from,
Faith (in the future
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Thanks, BevJen and Faith!
Have a wonderful week-end and do some laughter yoga, friends. Google it. For all of you stuck inside, it really alters your mood.
Love from PatgMcHaHa
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hello to all. Just wondering has anyone started OTC slow release iron pills? As I watch my RBC, HG, etc drop every month, I was wondering if folks had success raising the same. I won't be seeing my MO until May. I can email on Monday but felt why wait if others have done the same. Appreciate some feedback.
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Hi, Tinkerbell. Are you sure it’s iron anemia? My iron levels are fine, and I’ve been anemic since October of 2018, before I was even diagnosed. Have your iron levels been tested? Extra iron wouldn’t help me.
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KBL: That is a good point. I just see my hemoglobin and especially my hematocrit becoming reallylow, it’s concerning. So I guess then I’ll wait to have my iron levels specifically tested. Thanks
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Basic Ibrance question—. Worried about low WBC while on Ibrance with Covid-19.
When during the 21 day cycle are WBC likely to be the highest?? During the off week or week 1?
Thanks for any info.
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Tinkerbell, my hematocrit has been as low as 29.7 and hovers in the low 30s and hemoglobin has been as low as 10.0 but hovers around 10.6. I believe it would have to be close to 7 for a transfusion. It stays right around there. Mine hasn’t gone lower than that. I hope they can figure it out for youwhich kind it is. I don’t even know which kind of anemia I have. It doesn’t make me feel terrible, so we just keep an eye.
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DodgerGirl -- My wife's WBC and neutrophil are lowest around Day 21/22 of her cycle. It then builds up during the off week and is highest around Day 1 of her next cycle plus or minus a day or so.
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BLMike— thank you!!!
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