Ibrance (Palbociclib)
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A daily dose of Sovereign Silver will combat colds and flus. My wife is on I/L, first month and we have prevented colds for over 2 years using Sovereign Silver. 30 drops 5 times a day for her and 2 for me.You can get it on Amazon, just make certain you purchase the right one. 0.8nm particle size 10% solution. It is small enough to enter the cells and not be toxic. It really does work. We have proven it over and over taking group cruises where everyone gets sick but us. We have turned MANY of our friends on to it and they also are now believers. This is very important IMO since Ibrance is known to reduce White blood cell count making you more prone to illness.
I am not allowed to post links for some reason so go to amazon and look up Sovereign Silver. It comes in a brown glass bottle and has a blue and white label. Sorry for not being able to post the link.0 -
Thanks Philt. I will order some and start taking it before our cruise in Dec. It is too late this time.
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What do sclerotic lesions indicate? Is there some ambiguity as to the cause?
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Ciaci, makes sense to stick to “home time”. I think I’ll do that too.
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Husband11 I have a metabolic bone disorder called Paget's Disease that can cause sclerotic bone lesions. In my particular case, the radiologist is unsure whether the current sclerotic lesions that popped up on my three month scans are malignant and responding to treatment OR the Paget's Disease. So definitely for me, there is uncertainty.
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philt, welcome to our community, and thanks for sharing your wife's experience. New members cannot post links, as part of our spam-reducing efforts, so our apologies.
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I will cross post in Livermets and Ibrance threads for those that do not frequent this thread
Ok alll I didn't get the results...yup if you can believe it..they didn't read it yet...but I have some news. The oncologist said she did look at the PET and she looked at it next to my last PET Aug 2019 she said she didn't see any new spots but was quick to follow with "I am NOT a radiologist"...hopefully she will call tomorrow with the results.
She did mention that the 3 tumors in liver that were seen back in May on MRI were not too much different now to this MRI, cannot compare Aug 2019 PET to OCT 2019 MRI you have to compare PET to PET and MRI to MRI. However we still have a new very tiny tumor .6cm so either this grew after May...or was not seen on MRI in May. In addition the MRI had picked up the met that on the PET in AUG was "almost completely resolved" in the sacrum..I KNEW this one was back because I have been for the last 3 weeks having pain there again.
We talked about Ibrance/Let/Faslodex not working...unfortunately there is no test to see which one of those failed. She wasn't too familiar with doing like Chemo or something and then going back to those kinds (I/L/Faslodex) of drugs again *Cure-ious* I even read your words to her verbatim but she said she has not had a patient yet that went from those, to chemo then back to those. ??? Again to me, she is young..been an MO for like 7 or 8 years I think...so maybe she doesn't know> that worries me.
We discussed Verenzio>spelling sorry... *cure-ious she did agree that is a mono therapy but stressed that she didn't see a point in going to that right now since I/L/Faslodex failed. She said if I would have been on Ibrance/Letrozole...then she might suggest Verenzio/Faslodex now but...since I did Faslodex already didn't see the point. anyway moving on..
1) I asked if we could do a blood test to check for the P13K gene..she has heard of that but never ordered one so she is looking into it and will let me know where/how we do that.
2) The 2 treatment plan we discussed were: Aromasin/Afinitor or doing Xoleda. She said the thing about A/A would be that it would take a few months or more to know if it is working. I said "If I had bone mets only I wouldn't mind as much waiting to see if it can work...but since there is liver involvement and since there was already a new lesion formed while on the I/L/Faslodex...I don't think that I want to do that one". She understood completely about that. We talked about the Xoleda...and my concerns..she told me her biggest SE she hears on that is hand and foot syndrome> blisters, redness, raw...etc.. I told her that either way I do not want to make a decision on a treatment until I have the consult with the Interventional Radiologist at John Hopkins..and that I am wanting Cryoblation. (I just found out that appointment is next week Thursday late afternoon). She said ok to wait but doesn't want to wait longer than 2 weeks (if possible).
I am wondering if the radiologist can take a biopsy if he goes in to do the cryoblation? Definitely something I am going to ask. She is also having me see a radiologist about the met in the sacrum.
So I should have the PET results hopefully tomorrow. I welcome any and all input you all might have.....especially about the treatments etc.
PS: I also had, had a consult set up also happens to be next thursday with a new MO...I really really like the one I have but ...it's a little far and I feel like this other one has more experience..not much..but more.
I felt you all in my pocket literally!
Nicole
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Thank you Nicole for the update. Hopefully you will know more tomorrow with PET results and then more information with new MO consult.
Kind of along same lines....
I just saw a commercial for Piqray (spelling?). This is the first commercial I have seen for this med. I know we have discussed it on BCO. The commercial stated "If you have had progression on hormone therapy and have the PIC3CA mutation, Piqray may work for you". ----------- So, how do you know this med may be a good 2nd line therapy??????? ---------- I have had F1 testing at diagnosis 2017, 2 years ago now. Would that mutation be shown there or would a person get new testing at progression???? Nicole--- Would this med work for you now????
So do we do retesting at progression to see the mutations then and can then choose the next therapy based on the results???
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Nicole...I'm glad that you are starting to get some of your questions answered. Hang in there, we're all rooting for you.
I was just wondering, did you already have radiation in your sacrum? If so, is it normal for a tumor to grow back in a radiated area?
Candy...I just saw the same commercial.
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Jackie I never had that area radiated...I never had any mets radiated..I was only diagnosed in April and started Ibrance in May.
Candy... My MO as I mentioned is looking into the blood test for the P13K gene..so if I now have it...we will pick something that will hit that. I did have foundation one in April when I was diagnosed and it was suppose to be sensitive to Ibrance. They did (AT THAT TIME) check for the P13K and it was not found in my tumor then.
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Nicole and others- I had F1 studies and P13K not listed. But I intend on asking MO when progression happens to retest then. If Piqray would be an option, I don't want to miss the opportunity. I need to reread posts about this and do some research. Cure-ious --- please chime in if you read this. Do we retest at progression to see what mutations show up and what meds to try next??
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Bestbird told me that a blood test can show the P13K...I do know we looked at my F1 today with the MO they tested for like over 100 genes..there was soooo many..and P13K was one she showed me. I am glad that she is willing (even though she's never done it yet) to find out how/where we get/send that blood test.
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Elizabeth Gassaway from Tennessee.....remember that name. I was just sent her story on Facebook. I don't know where her cancer started or which treatment she got but they pretty much called her a goner.
Read this and know that her God is still in the healing business and your God is still in the healing business. Walk in the bathroom and say that into your mirror. It's the truth! If it happened for Elizabeth, it can happen for you!
"Update.......I started this journey April 1st with a very shocking diagnosis of Stage 4 cancer. It was in my esophagus, pancreas, adrenal gland, lymph nodes, and 50% of my liver was eaten up with cancer. I was told to go home and get my affairs in order. From the time I found out I have had this peace that only comes when you give it all to GOD and surrender. Through this journey I have found that my FAITH is so strong I can do anything with GOD beside me. He's had to carry me some but he loves us unconditionally and wants to be there for us we just have to believe. I have met some of the best people have found out just how truly loved I am by so many. Words will never be able to describe how thankful I am for this journey. GOD has big plans for me and I plan on making him proud and sharing his word.
Today is Oct 7th and my Dr. just informed me that my tumor markers are 5.1 down from 6,000 in April. Dr. Brandes says I'm in REMISSION my tumor markers are normal.
Let me tell ya'll I'm a walking miracle. I will begin maintenance chemo in 2 weeks.
I ask everyone to please share this post. I know there are people out there that are struggling and need to read this."Love from PatGMc and Elizabeth, both expecting to be well for a long time in Tennessee!
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Nicole- Hang in there, you are doing an outstanding job!! It feels like everything is super-urgent to hurry when there is progression, but you are actually saving time and angst by selecting the best of the available options!
When the FDA approved Piqray (Alpelisib), they included a blood test that has to be used to determine if the cancer has a PI3K mutation, because otherwise it won't respond to the drug. I haven't had any testing done yet, so I don't know if PI3K mutations can be detected at the beginning and then appear (at a higher frequency) upon progression, but in the literature it is usually described that the mutations show up upon progression.
AA seems risky because there are no biomarkers we can test to see if the cancer will respond. But then again, several people are responding right now, as you can see from that thread. Xeloda is probably more likely to work?, but what about clinical trials?
Something has changed, because the drug combo was working before and now its not. Is there an ESR1 mutation, or an activating mutation of PI3K, or increased CDK2 expression? Why can this not be determined? And I guess I still don't understand her reasoning about why Verzenio monotherapy is out - monotherapy means that it can work on its own, without an estrogen inhibitor. And your progression does not mean that the cancer is necessarily CDK4,6 resistant, we know from trials that at least 1/3 of cancers remain sensitive to a CDK4,6 inhibitor after failure on I-F. I'm not arguing that you SHOULD take it, only that it MIGHT work. There are newer-gen CDK4,6 inhibitors are even way stronger than Verzenio, plus CDK2 and CDK7 and CDK12 inhibitors making their way to clinical trials, so maybe go for a combo-CDK inhibitor at some point in the future.
It will be interesting to see what the second opinion doc says about all of this!! Hopefully, someone with more experience and familiar with clinical trials.
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Thanks Cure-ious...yes I just wish I could have "talked" to her like you. I tried..I printed out my stuff to say...lol Interventional Radiologist is next Thursday at 3pm and the new MO is at 1045am same day...
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Ok...so the MO just called. There is nothing new..THANK YOU LORD JESUS...however the uptake on the 3 tumors that showed in the liver went up. She said she wasn't really concerned about the uptake but it that it definitely looks like progression based on that there is a new lesion and the fact that my hip and sacrum are hurting again like before I started the Ibrance/Let/Faslodex....
I forgot to mention...that not only did my skin condition come back 3 weeks ago and pain in sacrum and hip but back in August when I had the PET it said that the met in sacrum "had almost completely resolved"..well now not only is my pain back there but the met there grew as well...they saw that on the MRI...so there wasn't just growth in the liver tumors there was growth in the bone mets as well.
I am taking that as progression. I feel like I am very in tune with my body...and this pain is as bad if not worse as it was before I was diagnosed with Stage 4....and it was completely gone 1 month in on Ibrance/Let/Faslodex...to me ...that is progression mild yes...but progressing. I mentioned in the other thread if I would have been feeling the same all along and just the liver numbers changed I might not see it as progression and ask to stay on the drugs..but I have a Grade 3 cancer...and I want to be proactive now...I do not want to just guess at a treatment (though that is what they basically do) that's why I am insisting on the Blood Test for P13K...so maybe that will help.
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So many new options it seems.. That alone is encouraging to me! I have a question. What is usually done when your platelets drop to 98? Transfusions? Take a break? Lower the dose? Or are will I need to start a new treatment.....doubt that the ladder .?
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My platelets average in the 70,000 range and I am on 100 mg. I was reduced from 125 to 100 Ibrance early due to low ANC and platelets. I start cycle 37 in a few days.
I bruise a little more than normal, but feel okay!
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Sandibeach, Thank you, thank you! Guess I can make future plans !! 😁
100mg sounds nice !
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Hi GinnyO2. My first cycle on Ibrance 125 mg, my ANC went from 3 to 1.0. For cycle 2 the dose was reduced to 100mg. At the end of that cycle ANC was 1.7 and it has stayed at that level since (on cycle 5 now). Hope that works for you too!
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Thank you, Movingsoccermom.
ANC was 1.5 which was good but not sure if still there. The rest of RBC’s have been Dropping.
Given what you and others are saying ....that the trial was only done with 125mg and now it seems that you and others are doing fine with 100mg.Thanks for reinforcing the probability that a decrease may be all that’s needed. I’ll have monthly blood draw next Tues and I’ll get back to you all regarding the results.
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hi! Back from my trip!
Hugs and love to everyone.
PatGMc I love you and your outlook. Always calms my heart.
Doing pretty well here - recovering from the trip which was fantastic. Nothing else to report.
Love,
Philly
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Ginny02, I hope I didn't confuse you.
I have been on 100mg Ibrance for a total of 35 cycles. The first 2 cycles I was on 125 mg and my platelets were too low.
My platelets now average 72,000 on the 100mg dose...my ANC as always hovered between 0.9 to 1.2, whether I was on 125 or 100 mg dose. It was my platelet level that caused the dose reduction.
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wouldn’t this be wonderful!
https://www.folio.ca/u-of-a-researchers-move-closer-to-magic-cancer-treatment/
Cathy
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Nicole:
I have reached out to MOFFIT in Tampa regarding a new FDA approved trial for CAR T therapy approved for MBC Stage IV.
CAR T historically was used very successfully on blood cancers like Leukemia but has just been approved for tumors and solid tumors.
What CAR T involves is extracting your blood, separating the white blood cells and then cloning them with Stem Cells and adding MCU1 protein to make them super killers. This is a custom serum takes about 2 weeks to get back from the Stem cell lab.This serum is then injected back into your body and the tens of millions of white blood cells are "trained" to go after the cancer, regardless of where it is in the body.
I would reach out to your Oncologist about this. It's fairly new, approved in June of this year by the FDA. Ours did not even know it existed for MBC.0 -
Ibrance users - is anyone else using arimidex (brand name) with ibrance? I just started this combination yesterday, I had been taking Tamoxifen. I feel really discouraged. This is round three for BC, and I'm feeling that the standard of care does not work for me. The oncologist thinks that each episode is a new cancer rather than a recurrence, but there is no way to tell (time span between 1as and second occurrence, 3rd occurrence and different side). She said cancer tends to mutate, so even if tested, your donot really know. A PET scan showed no mestatis, and a genetic test did not show any of the 20+ known markers 2009 Dx left breast BC (dense/lumpy, normal right). Lumpectomy, 2 nodes removed negative, Radiation, Tamoxifen 5 yrs. 2016 Dx L breast. Chemotherapy, Bi-lateral(my choice, no reconstruction), 2 nodes removed negative, tissue from R-side negative, started generic anastrozole, switched to Tamoxifen due to joint stiffness and trigger finger. July 2019 Dx R- axilla. Even with mastectomy, some breast tissue remains. Ultrasounds, CT scans, biopsy, PET scans. Taking Ibrance/arimidex to shrink tumor prior to surgery. Have not seen surgeon yet.
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Philt-
Do you have a link to your trial?The only one I find is this:
https://clinicaltrials.gov/ct2/show/NCT04020575
Contact: Jennifer Specht, MD 206-606-4668 immunotherapy@seattlecca.org
It is a phase 1 CAR-T trial directed specifically at a cleaved fragment of MUC1, which is found on the surface of most (90+%) MBC cells. It's open to all MBC subtypes, but because it is experimental, they want patients who have already progressed following multiple treatments. However, the cancers can still be bone-only, ie, liver mets are not required. The trial just started last month (Sept 2019) and is offered at Fred Hutch Cancer Center in Seattle, which is a major hub of CAR-T research and trials. Exciting!!PS CAR-T means that its just a one-time injection, is that right? thanks!
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Well I'm saying bye bye to Ibrance and Letrozole after six cycles. I had a lot of stability on my scans this week but my bone scan showed clear uptake on several new areas. So I'm moving over to Aromasin/Afinitor for three months. MO gave me the run-down on the next few lines of treatment we will try. I'm so super disappointed and scared to try a new drug treatment after I've gotten so accustomed to I/L and have tolerated it so well at 125. Bummer. But I need something that works. I/L is working, sort of, but it's clearly not doing what it's supposed to do. I never got to stable on this drug so I'm also really nervous that A/A will have a similar result but I'll give it a try before moving over the next thing.
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Cure-ious & philt this looks very interesting. Thanks for posting
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