Ibrance (Palbociclib)
Comments
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Maureen, It is important to keep in mind that you aren't really functionally immunosuppressed by taking Ibrance. Ibrance causes neutrophils to arrest their growth and not mature, so your counts of mature cells are low, but the cells all right are there and will start replicating and maturing right away when you stop Ibrance. By contrast, chemo kills these cells, and it takes weeks for them to be replaced, so in that situation you are truly immunosuppressed. For that reason, they don't find many people are more susceptible to infections when on Ibrance, altho the docs play close attention. If your counts are low you can skip a week and re-test, don't need to skip a whole dose. Actually I would just make sure to get those refills in to the specialty pharmacy early, so that you don't end up in a situation where the delivery or refill renewals are delayed.
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Thank you Love and Serenity! Glad to know I'm not the only one thinking about this. My husband just got home from the grocery store and I am worried about touching the packages. My WBC is 1.45 which says "critical". Everything else is just regular "low". Love, I agree, they all seem laid back about this. My onc said everyone is getting hysterical, but that was a week ago, before they closed everything. I don't know what he thinks now. He said if I get sick, they'll treat me but this seems very over simplified. Are they going to magically treat me or ventilate me when hundreds of others are waiting for hospital beds? It's not like we have first dibs on hospital beds because we're cancer patients.
Please everyone share what you know about Ibrance/Covid-19 and what you are hearing from your docs.
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If anyone is interested, I have posted about some potentially helpful supplements wrt to Covid 19 on the complementary medicine forum.
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MaureenB, Philly and all:
My oncologists opinion on covid19 and my immune system on Ibrance:
I am in Seattle. Right now, my WBC are 3.1, neutrophils 1.5. Onc visit on 3/12 said I am fine, I am not immunocompromised like many who are on chemo, etc. I have had my neutrophils go below 1.0 on day 24 ish on Ibrance, which will be in 2 1/2 weeks. During that week off and twice when i have needed an additional week off for my neutrophils to get above 1 I need to be careful and avoid crowds. She seems not concerned at all. Her affect is always very factual and "scientific" and not super animated so I am not great at reading her. Basically, "if people at work are coughing or sick, they should stay home and you should not be around them." Blink. I asked specifically if I am compromised and she said no, not right now. My father is very sick and fractured his hip. I am flying with my family to see him on 3/27. She said that is fine (2.5 hour flight).
I can self isolate BUT my 20 year old son works at a large grocery store (seems very exposed to the masses- they are now as busy as the day before Thanksgiving, every day. He lives with us so we are having him remove his work clothes in the laundry room and immediately wash them and he is taking a shower right after that once he gets off his shift. His college classes are online now so he is no longer commuting on public transportation.
I sell real estate which has hit a lull here. I completely support social isolation for all. I don't want a recession by any means but I work a lot and this has given me some time to catch my breath, stay home and study for an upcoming license test. I also don't want this to spread, for any of us to get this and have our treatment interrupted. Having stage 4 cancer while looking pretty normal (although not emotionally feeling normal!) has given me a perspective that there are a LOT of people like us, living our lives and walking around with serious medical conditions. Social isolation/distancing now so we can limit the spread, right?
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If you Dancers are not excited about going into a crowded grocery store I recommend that you sign up for Shipt or Instacart.
You choose a time and your groceries are delivered to your door.
The small monthly fee is barely more than you'd spend for gas on multiple trips. If you do Shipt there's a two weeks free and $50 coupon available online. Just Google.
You can even have the shopper ring the doorbell and leave the groceries without any personal contact.
Love from PatGMc
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I remember seeing a discussion on the varying brands of letrozole. I've been getting mine by the maker Teva and for the first time I was given the Breckenridge version. I'll be starting the new one soon. I'm used to Teva but do have foot pain when I get up and thinning hair. Can anyone who has used more than one manufacturer tell me what you noticed?
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Maureen, listen to Curious... she’s knowledge and sensible. Yes we are more at risk... but we already do all the things as cancer patients and that’s oursuperpower, so just keep doing them!
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Thanks to everyone who has welcomed me. It does feel great to hear about others taking Ibrance and Letrozole. Hopefully being de novo with just one round of chemo will help me.
I trust the oncologist. They just screwed up and will take much better care of me from now on.. I noticed the sunset yesterday and cooked a few meals. I think I am coming around.
Thank you again.
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Thanks Curious for that great explanation. Welcome newbies. Pat I am glad you are with us. Husband will definitely ck out that info..thx. Scan Fri will let you know next wk how it turns out. Sometimes I am just numb with all this. Don’t mean negative just scaniety. Everyone take care of yourselves.0
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Got the shots today! I asked to lie on my side for each one and they didn't hurt so thank you very much for the good advice. My bootie is well-massaged now and I'm sitting on a heating pad. I even walked to the end of the block and back!
Yes, I'm dancing the Faslodex Fandango which may become the Faslodex Foxtrot by tomorrow, but it's all good. My hopes are high for my new combo. I pick up the Ibrance 75mg tomorrow and get an XGeva shot on Wednesday. Why all on different days? Because my cancer policy will only pay for one a day! Insane, huh?
My cancer center was taking temps and asking questions at the entrance. (1.) Have you been out of the country in the past 14 days? No. (2.) Have you spent time with anyone who has been out of the country in the past 14 days? Yes. The worker looked like she was going to faint. "You have?" "Yes." Big pause. "Well, okay. Thanks. You may check in now."
Anyway, I'm thankful my granddaughter is back from the UK. She got home Friday night so she missed the big Dallas airport panic a few days later. I pray that all your loved ones are safe and well and that all scans go well this week, my friends. God is good and will see us through it all.
Love from PatGMc
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Pat,
Glad that the lying on your side worked better for the shots. I stand for mine, with the weight off of the leg getting the shot. I also use ice packs, not heat, after my shots -- they give them to me at the center.
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BevJen, we do get some mixed advice, don't we? My nurse instructed me not to use ice. (She told me why but I don't remember.) Someone else said she was told to massage the area in advance of the shots but my nurse said not to as that would make it more likely to bleed excessively.
Go figure!
Love from PatGMcWhatever!
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Hi Ladies, I am a long time lurker. Always appreciate your support, humour and vast knowledge! I have had great success with Ibrance/fasoldex, just finishing 39 months! But unfortunately the last few months my markers have been climbing...fast forward and a PET scan reveals 3 small new lytic lesions. Onc's initial thought is to stay with the plan and add a bone strengthener. What do you guys think? I was reading Curious' post about adding to the Ibrance/AI combo but didn't fully understand.
Thank you for any suggestions!
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perky, Congratulations on your nice long dance with Ibrance.
Personally, I would show up tomorrow for XGeva!
Then what if you had blood taken for the Guardant testing (or one of the others) to see if you are still hormone positive? (This used to require a new biopsy.) A report will come back with a list of recommended treatments. I took Ibrance with an AI for 3 years, then had a 3 month rough experience with a PARP-inhibitor. The Guardant test says I'm still hormone positive and recommends Ibrance/Faslodex. I got the first shots today and all went well!
I'll be praying for you and look forward to hearing of your next step toward getting well. Remember that the researchers are getting closer and closer to cures for many of us! We just have to do what we need to do until that day!
Love from PatGMcHopeful
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Hey y'all- we got an important new cancer advance to discuss!!!
This is a CELL paper from a well-known and very talented scientist, Fiona Simpson (BTW, isn't Fiona a GREAT name?!)
What her group discovered is that high levels of an old anti-nausea drug (called prochlorperazine or PCZ) can block a process called endocytosis, which is where a cell can suck surface proteins (antigens) from the surface back inside the cell and protect them from the external environment. This process can be used by cancer cells to hide surface molecules that are attracting monoclonal antibodies, and allow them to escape drugs meant to kill the cancer cell. For example, a HER2-positive cancer cell might be able to hide some of the HER2 by endocytosis, and thereby escape death from Herceptin antibody.
So, they reasoned that this drug might improve the activity of cancer drugs that are aimed at proteins on the outside of cells. And it works amazingly well!!! They studied the response of cells that express EGFR protein to the drug cetuximab, a monoclonal antibody that binds to cell-surface EGFR antibodies to kill them. Treating mice with PCZ prevented the cells from sucking the EGRF to the interior of the cell and hide from the drug, which is one big way for how resistance develops. The combination of PCZ and cetuximab was way better than either drug alone, and the effect was HUGE. Moreover, the PCZ caused the EGFR on the surface of the cell to cluster into big EGFR "islands" and make a large target to attract the cetuximab. They are now starting phase 1 trials on several cancers, including TNBC, to see if PCZ and cetuximab work in combination in humans
Similarly, they showed that PCZ greatly increased the anti-cancer activity of the immunotherapy drug Avelumab. In principle, this PCZ drug would make herceptin work better, and would improve the activity of any other treatment that targets cell surface proteins on cancer cells.
So this is a drug that might make it so that we all respond to immunotherapy, and to any future CAR-T treatments, very hopeful!
There is a great video is in this first link where she discusses how this was a decade-long project
https://www.uq.edu.au/news/article/2020/03/new-dru...
https://www.sciencedaily.com/releases/2020/03/2003...
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Cureious, your post made me feel giddy and gave me goosebumps. I needed that, thank you
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Cure-ious, I love Fiona and YOU! This is really exciting news and I can't wait to hear your future updates.
Jensgotthis, I caught your goosebumps! It's the middle of the night here.....Shall we dance?!
I know finding the way to make immunotherapy work well for breast cancer is a big goal of researchers. I pray this is the key!
Love and excitement from PatGMc
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Cure-ious, your post is very exciting. I'm hoping this is also the key to making immunotherapy work for us.
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I wanted to thank some of you for the warm welcome a few pages back. I have been too busy to get on here lately and quite honestly pretty worn out and am trying to get caught up on the threads on here. That being said, I truly appreciate the information that gets exchanged here and although we are all in the "sorority no one wanted to pledge", I find that sometimes besides valuable information a laugh or two is shared.
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Cure-ious - wow, truly hopefull! Thank you for posting!!!
Loved the quote in the article: "Amazingly, their cancer was rapidly eliminated - as if the new combination, in addition to being more effective, was also able to teach the immune system how to better recognise cancer cells," Dr Simpson said.
PatGMc - thank you for your reply! Agreeing to the bone strengthener seemed like a no brainer to me too! Just sent my onc a note asking when I can come in for the bone strengthener (today?) and requested the blood test. We have not been able to get a biopsy because of where the tumors have been in the spine or too small (I am grateful!)
Thanks again!
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Great news today. My wife just got back the results of her MRI and CT scans and the tumors in her liver remain stable. No new lesions spotted. Come June I believe she will have been in Ibrance / letrozole for 3 years now.
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Excellent news!
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Husband11- Woohoo on the stable scan results!!!!!
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aprilgirl1 My doctor suggested soaking clothes in a 0.5% peroxide solution, which has been shown to neutralize coronavirus in 1 minute and doesn't fade colors.
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Husband11, please tell Wife11 that we're grabbing her hands for the Stable Dance! Hooray for 3 years!
Love from PatGMc
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Great news on stability Husband11! Thanks for sharing.
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Husband11...Yeah!!
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Great news Husband11!
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Husband 11,
Great news about your wife. My interventional radiologist told me that stable is like hitting the lottery in all of this stuff -- and to all of us, I guess that it is. Wonderful news.
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Hi All,
Perky welcome along with others. Great news Husband, Curious and Pat I am always in awe!
We are now officially in lockdown here in the UK. I had to cancel my much anticipated short trip to Barra as told I need to be isolated for 12 weeks....yikes ... my garden will look lovely as will be spending plenty of time in it. Amazingly we are seeing the best of people.. the local wee airline and car hire saying 'Don't worry, re book when you can & we'll hold your original booking without charge' and the worst of people, scaremongering and panic buying. It'll be a long haul and I will need you People to help keep me sane.
Anyone else?
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