Ibrance (Palbociclib)
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Miss Rabbit...in these worrying times you managed to make me laugh. This is for you.
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Chloroquine phosphate may also fight the pneumonia brought on by coronavirus.
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Lmao, Jackie! If only tooting was that pretty
Thank you for the giggle 0 -
Jen, great news!
Pat, welcome back! I love your art. One of my personal goals in 2019 was to buy original art from local artists. Buying art used to stress me out but now it makes me really happy and yours is just full of joy.
Dodgersgirl, good for you that your TM's are down and you are able to start cycle 2!
Thank you all for your support, good news from my petscan...compared to my petscan of 11/17/2019 all areas are measuring 1/2 or less of the previous size and taking up much less of the FDG (no significant FDG uptake) or have completely resolved.
I am really relieved and really, really beyond happy that the fulvestrant and ibrance are working. 2 out of 3 (I am on cycle 4) of Ibrance I have needed a second week off for my white count to come up so we will assess at the end of this cycle and my onc may lower my dose.
Sending you all love on this Friday the 13th!
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Aprilgirl, great news! It is good to receive good news in the midst of all this madness.
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Aprilgirl, what a wonderful result, long may it continue to go well for you.
Here in England covid19 madness/panic buying has started. I went to do my weekly shop today, wearing gloves: no toilet rolls , pasta or aspirin [for my husband] amongst many other things missing from the shelves!!
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AprilGirl1-woot woot on your petsxan results!!! May you have many, many more such results. 👏👏
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Aprilgirl,
Great news! Congrats!
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Aprilgirl, that's just wonderful! I expect it will be down by half again next time. We can't wait to hear that!
Thank you for the lovely compliment. Can you show us the art you bought?
Love from PatGMc
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Congrats Aprilgirl!
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Well I'm very happy to share more good news — six month scan results, in the words of my MO, were "good!"
it wasn't quite like my September results when she said the scans were “beautiful" and enthusiastically proclaimed that I was NEAD but this time used the word “stable" and read from the report about my many “bony sclerotic lesions."
I gather that, after 40 cycles, Ive had no progression, and I'll take it!
The hospital was a crazy madhouse with the Coronavirus panic so I won't fault her if she wasn't jumping for joy.
Thanks to all for you love and support through this crazy journey ❤️
Hugs,
Penny
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congrats penny and Aprilgir
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The oncology nurse practitioner did not read the bone scan correctly. The radiologist did not read the CT scan correctly. I was given a round of chemo, lost my hair. I was scheduled for more chemo, Taxol, a double mastectomy, and radiation.
Oops. Your breast cancer has metastisized and it it is in your bones in six areas: your skull, spine, rib, pelvic. more chemo, New treatment plan - NO Taxol, NO double mastectomy, NO radiation. Instead, Ibrance and Letrozole.I am in shock. I have been given 10 good years. The Letrozole is making the areas where I have arthritis hurt.
Help me make sense of this. Feeling abandoned by the oncologist. No surgery?0 -
pat, jen, april, husband - hooray for all the good news!
Pat - key to those shots is to warm them up. Make sure you put them in your “pits” or roll them in your hands. I would shake them like morracas! And relax the leg when injecting. I told my nurse that we had to ick a topic to talk about while she slooooowly pushed the fulvestrant in. The next fews days, your pee will smell like castor oil! Ha! Glad that it is no chemo for you. Love your picture! Makes me smile at the art you do.
Someone was talking about COVID-19. I still work and in an open concept office. I emailed my doctor to find out if I should be worried and work from home. He said yes since I am still undergoing treatment. He considers me high risk. So, now I get to work from home until this goes away.
Woodland - oh my! That is a huge “misread”. Not sure what your BC background is, but I believe if you are de novo, doctors don’t necessarily do chemo anymore. They start with targeted therapy. There is a lot of good info on this thread and many helpful women who will help you sort things out on this journey. Welcome.
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Congrats Penny! 40 cycles, that's awesome.
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Penny- 40 cycles with no progression is fantatic!
Pat - I will take some photos and post some pics of some of art I have purchased!
Denny, Covid madness is STILL happening here in Seattle. My son works at our local grocery store p/t while in college and said today was like xmas eve. They are out of most items you mentioned including pasta. He is in the shower, hoping he stays healthy.
Woodlands, I am so sorry that the scans were misread. I had a heck of a time getting any doctor (primary care, ENT and Oncology nurse practicioner) to listen to my concerns - all told me I had a virus and refused to scan me from August-October. Once scanned, I got in with a new oncologist. The Fulvertrant/Ibrance combo gave me almost immediate relief of the pressure on my windpipe. My onc also said we start with hormone blocking and ibrance first. I just started cycle 4.
I am sorry you are here BUT you are will find a lot of comfort, friendship and reassurance here. You are not alone.
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Woodlands, we are so sorry to hear that, what a shock that must have been. We know this is hard to come to terms with, but we hope this community can help support you and offer encouragement and advice. We're all here for you!
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Hi woodlands,
I know its a shock - when they told me I had to keep the damn primary and they wouldn't take it out/take it off I must have sat there with a confused look on my face for a good two minutes. The drugs ARE working on it, though I still hate seeing Frankenboob. But that is the standard of care for de novo right now. I too felt abandoned, like well, she's a goner, NEXT! However, after a few months of processing this, and seeing how I/L has taken care of business, I'm doing ok mentally. I mean, you can't reason with lesions, so you can only do what you can to keep them at bay. Plenty of us out living life and enjoying the time the drugs have given us.
Give it some time to come to terms, but do hang/lurk with us ladies here - lots of good advice and support.
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Woodlands, I was diagnosed Stage 4 de novo (bone met on spine). I had my primary tumor removed during the surgical biopsy (surgeon and I agreed ahead of time that if he could get clear margins, he would take it out), but that's not standard of care anymore for Stage 4. I have had it explained to me, but I still don't understand why...
I never got any chemo or radiation, was told it wouldn't help. Instead, started on Ibrance & letrozole. Within six months, which is when I got my first follow-up scan, the spinal tumor had "resolved". Two years since that scan, and still NED. I was exhausted for two years, and had pain in both legs constantly for a while, but lately I've been feeling great - knock on wood. I don't even nap in the afternoons anymore!
Just started Cycle 35 (31+ months). Hopefully, I'll be on Ibrance until they finally find a cure.
Sorry you have to be here, but it's an amazing resource. Everything you could possibly be feeling (physically or mentally) has been experienced before, and everyone here is so helpful and understanding, I can't imagine what it would have been like to try to navigate this experience without them.
Sending all good thoughts!
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Woodlands, I'm sorry you're going through this. My understanding, and someone can correct me if I'm wrong, once it spreads, there is no reason for a mastectomy. That would be done so it doesn't spread. I was diagnosed de novo, no primary. I was also confused why no mastectomy, but this is how I understood it.
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I was diagnosed with Breast Cancer Stage III after a bi-lateral mastectomy back in July. I completed ACT treatment and during a recent CT Scan they found bone mets. I am awaiting confirmation from the biopsies but my oncologists are confident of my Stage IV diagnosis. Therefore I will be starting Palbociclib soon and I am concerned that my hair, eyelashes and eyebrows will never grow back. Wondering if anyone knows if my hair will grow back?
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Has anyone been in a situation where lung Mets disappear on I/L but there are new sclerotic bone lesions (old ones are healed or sclerotic) and the doctor is thrilled by this? I'm so confused. She was like...see ya in a couple months this is a great thing.... how the heck are new lesions good??
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kirbygirl...your hair and eyelashes will grow back. Mine did
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Becksbeatingit: The new lesions could be a sign of healing of areas that were previously undetected metastasis. Here is an article that discusses it.
https://www.ncbi.nlm.nih.gov/pubmed/10741794
PURPOSE:
According to the World Health Organization (WHO) criteria for response of bone metastases to therapy, new lesions indicate progressive disease. We intended to prove that a new sclerotic lesion on conventional radiography may also be a sign of a positive therapeutic response in a previously undetectable lytic metastasis.
MATERIAL AND METHODS:
In a previous placebo-controlled clinical trial of clodronate (Ostac) therapy, 139 breast cancer patients with bone metastases underwent both conventional radiography and bone scan every 6 months for 2 years with 99mTc before and during clodronate treatment. WHO criteria were applied for therapy response evaluation.
RESULTS:
In 24 patients, 52 new sclerotic lesions observed during therapy were selected for re-evaluation of conventional radiographs and bone scans. In 8 of the 24 patients, 17 of 52 new sclerotic lesions (33%) had showed positive uptake on previous bone scans. These lesions were possibly misinterpreted as new when applying WHO criteria.
CONCLUSION:
For better assessment of new sclerotic lesions during treatment, more sensitive techniques, e.g. bone scan, are needed as a complement to conventional radiography.
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Thanks husband. I guess maybe the fact they are sclerotic is the good sign? My original ones weren't . My last scan was a year ago so I guess it's possible.
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Congrats to all with good scan results!
Kirbygirl...I had ACT (my MO called it TAC) and my hair grew back very sparse and thin. When I started Ibrance/Faslodex, I lost more. Hopefully you'll have a different outcome though.
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Woodlands, good advice here from de novo ladies and Husband. You must be angry and scared and confused. Trusting your team will also likely be a thing too. Bear in mind sometimes when a mistake that bad has been made they’ll probably bend over backwards to look after you....or you request a new team?
If any consolation at all, you’re in the right place. You’ll find people here who are on the same meds, sensible, realistic, enquiring and funny! We are also from all over the world, so we share. I’ve found this to be hugely reassuring and informative. Wouldn’t be the first time I’ve queried with my MO team info from here with positive results... I don’t disclose my sources through as ‘forums’ online are dismissed as places to be distrusted and unreliable. Little do they know together we are stronger....and I don’t care if that sounds like the worst cliche!
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In Atlanta most schools and colleges are closed or online only. Sporting events postponed or cancelled. I expect this will start to expand to the whole country. Social distancing is supposed to be happening, although here, people are still going to bars and restaurants as they are not yet closed. I keep asking my doctor if I should postpone Ibrance or just skip it for a month until (hopefully) some of the COVID-19 outbreak starts to slow down. He tells me to keep taking it. I have a critically low WBC. I am so confused and feel like I have to choose whether to die of coronavirus or die of cancer. Even though I am staying in the house, my son still goes to swim practice, my college daughters are coming home, my husband goes to the grocery store. I am frustrated that there is no information on Pfizer's website about Ibrance and Coronavirus. I was on hold for an hour with them and finally spoke to someone who just said, "we don't know." Is anyone else worried about this? If we have no immune system should we be completely quarantined somehow? In a separate room in our houses? Pause the Ibrance? What are you all hearing from your doctors? I haven't heard one single person being told to stop the Ibrance. I don't understand. This virus could kill us immediately. There is no cure and there won't be enough hospital beds or ventilators if everyone gets sick at once. Cancer takes time and there are treatment options. Maybe I'm completely paranoid but it seems like these doctors just want to push this medicine no matter what. I don't feel confident that anyone knows whether we should be taking immunosuppressants right now. None of you seem to be worried. Is it just me? Maybe I just need more ativan?
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hi Maureenb
First of all I think your concerns are absolutely valid. What are your numbers like? Mine have not typically been low but for two weeks of labs now, I am quite low.
WBCs are 1.9 and ANCs are 0.8 which is low low for me. I am also getting over influenza b, so that caused a hit I am sure.
I am supposed to start next round of Ibrance tomorrow...but I am also probably changing treatments soon due to a bone progression and active mets in my spine (after 3 year of being “stable-ish.”) so I don’t even know if being on Ibrance will actually make a difference or not at this point.
I will talk with my team at my MOs office tomorrow and see what they say/think. Last week they seemed kinda laid back about everything BUT did recommend that I come in for my next infusion at a later date, push it back a bit until I have recovered from the flu.
Love,
Philly
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maureenb - It's not just you. I'm still taking Ibrance, and my blood counts are way below normal. They seem to get lower with each cycle. Our immune system isn't decimated as it was during chemo. However, I don't want to risk getting sick to test it. While I stay home, my husband and kids take public transit. They're more careful now, but we have 24 confirmed cases and counting.
It helps me to have a plan. Wash often and try not to touch things. If I get sick, I'll email my MO and follow his instructions. Also look into how your hospital and local health services are handling possible infections. I also have Ativan just in case.
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