Ibrance (Palbociclib)
Comments
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Cure-ious - I’m with you. I see no value in progression with an anti-hormonal alone before Ibrance and I’m annoyed that someone is wasting precious research dollars to prove or disprove that. And I would be suspect of the results, given they are aiming for overall survival equivocation and that takes years and a large pool of participants to prove out. Sounds like wasting money just to show insurance companies can save money with less time on ibrance. Like Grannax said - Boo
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Hi Josalo - I have been prescribed medical marijuana and here is my experience with it so far:
First a little background from my understanding and research:
CBD oil: It is either made from the female marijuana plant OR ot from the male hemp plant - both are marijuana - one is male and one is female...female plants contain higher amounts of the medicinal properties of CBD and THC. The male hemp marijuana does contain some amount of CBD, but not close to the amount that the female marijuana plant does. The female marijuana plant is the one that is considered "illegal" still in many countries (and US states). If medical marijuana is illegal where you live, then you are most likely only going to be able to get the male plant CBD oil which is available all over the place. Coca-Cola is working on creating a soft drink with CBD oil in it! BUT that is because it really doesn't do a whole lot! I would think of this more as eating an industrial oil such as corn oil.
SO...there are different advantages to taking CBD vs THC when it is from the female plant, which is much more biochemically active than the male hemp plant. CBD in general will be much more "awakening" and for me it causes some anxiety and definitely is not something I would use to sleep. CBD alone is not psychoactive - so you do not get the "buzz" from it - although some people claim that it helps them feel relaxed. THC is psychoactive.
Typically, you want a balance of THC and CBD because they work synergistically together.
What I use:
1) At nighttime (for insomnia and pain): 8:1 THC to CBD sleep tincture - very small dose.
2) Daytime (as needed for pain and fatigue): 2:1 CBD to THC vape cartridge. VERY SMALL DOSE.
I honestly do not like the feeling of being "high" because I tend to have paranoia and anxiety when high. I do notice that the 2:1 CBD to THC makes me feel very energized but also a little anxious so I honestly have not been using it. Even with the smallest inhalation, I can feel it immediately. I am very sensitive.
Hope this helps!
Brenda
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Ladies,
has anyone experienced the sensation of some parts of your body going numb? I am not completely sure I have seen any association between Ibrance and neuropathy. My wife has had a few random episodes throughout the past weeks: face, tongue, fingers. They last for just a few seconds. Onc yesterday didn't seem to care much for it.
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Daniel I have occasional numbing of finger tips.
Anyone have any problems with hypersensitive teeth..I had it before chemo but this hurts enough to take a few advil..mostly hurts when upper teeth touch lower teeth..Not all just a couple..TY
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Lakewoman, yes, I get hypersensitive teeth on rare occasions. Usually it is associated with a cold or UNI, but sometimes it is just random. The first two times I was ready to call a dentist, but I am a dental procrastinator, and it went away by itself. Now I just wait and it usually goes away.
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thanks for the discussion about that clinical trial proposing to delay Ibrance to secondline therapy or later- actually it seems unlikely the oncologists would let that happen, because they would be the ones who have to explain to all newly-diagnosed freaking out patients why they can't have this drug that would work so well upfront! The horse IS out of the barn, as it were, and its probably some insurance company trying to save some $$$- so, indeed BOOOOOO. to them......
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But now let's move on to Part Two, which is a happier trial! I was surprised to see this one pop up, because some of the strongest supporting data comes a paper that was published in Cell not very long ago (June 2018)! Either the drug companies knew of these results from their own studies earlier, or it really shows how fast they can set up a clinical trial when they really want to do it.
The paper showed that a small number of metastatic prostate cancer patients have a subtype of cancer that carries a CDK12 mutation. CDK12 mutations have been found to happen with some regularity in metastatic breast, ovarian and prostate cancers, and indeed the data suggest that mutating CDK12 may play a role in how these cells became metastatic. The Cell paper (link below) reported that CDK12 mutations make the cancer 'hot' to immunotherapy pre-clinically (in mice) and then they even went into the data from clinical trials and found that 2 of the only 3 metastatic prostate patients who had a big response to immunotherapy happened to be the ones who had the CDK12 mutation. Because the CDK12 mutations only happen in a small number of metastatic prostate cancers, the correlation is way larger than you would expect by chance, and indicates that loss of CDK12 kinase activity can make tumors become immunologically "hot" and responsive to immunotherapy.
https://www.ncbi.nlm.nih.gov/pubmed/29906450
https://www.genengnews.com/topics/omics/new-prosta...
https://www.pcf.org/news/new-study-identifies-anot...
Below is a link to the trial- it is open to prostate as well as ANY type of cancer that is found by genetic sequencing to have a mutation in CDK12. In this trial they are treating with a combination of two checkpoint immunotherapy drugs (Nivolumab and Yervoy) targeting PD1 and CTLA4. Patients have to have the CDK12 mutation and measurable disease (ie liver or lung mets, etc). For reasons I don't understand the trial is only being done at Univ of Michigan, but says the sponsors are UCSF and Memorial Sloan Kettering. This may be a case where the academics decided to fund it themselves? Interesting the doctor in charge of the trial (Alva) is listed as one of the co-authors of the Cell paper! And it includes work done by the national stand up 2 cancer prostate team...
https://clinicaltrials.gov/ct2/show/NCT03570619
CDK12 mutations occur in a ( relatively small) number of MBC patients, both triple-negative and HR-positive- in addition, the gene encoding CDK12 kinase lies right next to the HER2 gene, so patients who have gene-ampified HER2 (most of the patients expressing high levels of HER2) often have high levels of CDK12. High levels of CDK12 could be just as bad as no levels of CDK12, but it hasn't been studied yet.
And all of this is of strong interest to the larger majority of us who do not have a CDK12 mutation, because CDK12 inhibitor drugs are making their way into trials, and they will block CDK12 activity in cancer cells. If the drugs are tolerated and effective, it potentially means that we could all be benefitting from immunotherapy, either those who have a CDK12 mutation in their cancer or others taking a trgeted CDK12 inhibitor drug. The immune response they observed with the prostate cancer patients was quite strong, because the cancer cells deprived of CDK12 were found to express proteins on their cell surface that attracted the immune system to come in and kill them.
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TY IntoLight and guess what? I have had a pretty bad cold this week..Nasal congestion.. some coughing.. .chills & low grade temp. Saw onc yesterday, regular monthly checkup. didnt have tooth pain then..She was concerned about two bad bouts of diarrhea I had...To describe..depends weren't dependable..Never made it to bathroom once..I will not get into more details.But I do recognize my nature keeps me from telling anyone how bad something is .eg pain , and this cold and the diarrhea. I learned that I have to tell her how it is... .She wants me to keep track of days and number of times I go..And recommended I switch to Immodium tablets..she even wrote how to take them..yep and I am an old nurse.She's got this!!! and so have I!!! Never told her this YET!! but I am watching what I eat now. I tend to lean..pun intended.. towards fat to taste something ..chips, pepperoni etc.... I am on 125mg Ibrance and because so much of lung mets were gone on last PET..in Sept..she says she does not want to reduce dosage nor do I.Thanks for being there friends.
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Cure-ious - we are so lucky to have you... reading and interpreting these studies for us.... and best of all providing hope!! You are an angel among us!
Mountain lady - I don't mention the amount of diarrhea that i get from Ibrance to my MO and perhaps I should. It comes and goes but I don't think it's as bad as what you are experiencing.
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Is there any program or organization that would provide the ability to donate an an unused, unopened comtof Ibrance? If you know one, please pm me as I don’t regularly follow this thread anymore.
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Thank you LovefromPhilly for your long and well written answer. It's not possible for me get cbd with thc, that's totally forbidden in my country. I think I read that it's only 30 people in the whole country that gets a legal prescription.
I started my 3 round on Ibrance this wednesday. Yesterday and today it felt like I was needing less pain killer. I cross my finger that the feeling is correct. I do not have much pain just little to disturb my sleep and dull all the time, just enough to disturb my ordinary life. I'm only using Ibuprofen.
Needing less painkiller, I can stretch the time between the pills a bit. I hopes that means some of the tumors reacting on the medicin. The biggest trouble now is my hips. Cross my fingers again that they not find anything on the MR so I can get some help with simple massage and exercises. I booked a trip to Chamonix with friends and family skiing the first week in Jan so I really hoping to be able to do that. Our family's has done this types of ski trips together for many year.
It feels like I complain about trivial things when I reading other people's story, sorry :-(0 -
Thank you, Cure-ious!
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Cure-ious,
Thanks for parsing these! This CDK12 downregulation one is especially cool
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Cure-ious;
Thank you so much for these articles and explanations. I will have to read and re-read many times in order to get a real handle on these lol.
Cathy
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thank you cure-ious
Josalo I had radiation to my hip as well as the ibrance. The combination shrunk the tumor. Have you had radiation?
Complain away on this thread. Everyone’s going through something and you’re important. No one gets minimized.
Have a good evening all
Tanya
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Josalo: I second what Tanya wrote. This is where we can vent, cry, whine, complain!! We can also be angry, pissed annoyed, frustrated, grieve. And a lot of the time we are funny and full of love and hope.
All of you is welcome here!!!
Hugs!!!
Brenda
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Thinking of you, Josalo! I hope your sensation of having less pain indeed means that your scan will show improvements!
I am curious in which small country you are living?
Love to all,
Lauren
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Me too Josalo.
I got the call yesterday. I get to be a model in NYC. Suzanne Lindley from Say Yes to Hope asked me. It's February 16. Several of my friends and family are coming to be my fan club. It will be so fun. And I get another designer gown and jewelry. Somebody pinch me.💞
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Wow Grannax! You’re becoming a regular fashion supermodel! So happy and excited for you! Can’t waiy to hear how this comes together for February
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Ummm Have you seen those skinny tall models. I'd have to grow at least 8" taller and lose sixty pounds. Hahaha But thank you. I'm not as scared of doing it as I was last time. My family gets so excited, even my son wants to go. I said I thought it was a kind of a girl thing since its fashion week. He said Mom it's about you, not fashion week. Awww it pulled all my mom strings. Good tears.
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Grannax; Imagine being a model during fashion week. Wow! Your last experience was very impressive and I'm looking forward to the video of this one. Congratulations.
I am so sorry to hear of those suffering pain. I hope this is a better week for you all.
Cyberhugs
Cathy
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Might they put you up on the NYC billboards, etc?? Cool! And good work, Grannax!
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Grannax, your fame keeps growing! When you go on tour your Memphis Fan Club awaits you!
Happy Thanksgiving to all you dear friends. You are high on my thankfulness list for this year.
Much love from PatGMc
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yay Grannax!!! Please post any videos/photos that you receive for the upcoming fashion exposè!
Hugs to all!
I am having one of those days where I did not get a whole lot done except made it to and from the grocery store (about 1 mile walk each way).
I just wanna lay in bed all day today! Which feels strange being that I am “stable” but I guess some days the medications just make ya have to chill out and relax (hard for me to do!)
Brenda
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Grannax, yay! I join with all the others in celebrating this opportunity. Enjoy!
Brenda, yes, some days are like that. I have had to learn to allow myself down days.
I am extra exhausted from a fun day at Disneyland yesterday. I think it is getting harder for me to bounce back. Thankfully I have a DD and DIL here who can make the birthday dinner for my son tonight, and help with cooking the bird and trimmings for Thanksgiving.
Here is a peek at the joy at my house this week...Grandkids are the best!
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IntoLight, your grandkids are so cute! A lot of this experience is so fraught and intense thatI love the occasional grandkid pictures we get here.
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Intolight, they are beautiful children. Disneyland had to be great fun with them!
PatGMc
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Intolight your grandkids are gorgeous.
Grannax you are the next top model!!!!
NY fashion week. ENJOY!!!!!
Tanya
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Ohmy gosh, IntoLight!!! That is the cutest collection of kiddos ever!! 🤗 🤗🤗. I love 💕 them!
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I have a few days worth of catching up to do, but wanted to respond to Cure-ious' first question about holding Ibrance as 2nd line. Someone posted recently (Cure-ious?) that studies are showing when I/F fails it is often the AI, not Ibrance that fails. So I'm in the consensus "Boo" group.
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