Ibrance (Palbociclib)
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Snooky...that is what my doctor is having tested right now. I'm still waiting results. I was due to start Ibrance again and get my Faslodex and Xgeva injections this Monday but we are holding off until the results come in and see what will be next in line for me. He is doing Foundation One and another one (forget which, will find out when I talk to him directly).
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BevJen- I have applied for assistance for my Xgeva. I received a bill for over $1,000 for my part for my first Xgeva with Wash U. (Dec 2020 dose) That assistance is pending. I am going to find out about financial assistance for the Guardant test too.
I just do not understand what is next. I have appointment with MO April 19 to discuss next step. Liver tumor board recommendations and MO thoughts on the Guardant test results. I just wanted some guidance from the liquid biopsy. When I read "no mutations" I do not understand. I had BRCA mutation and recommendation of a PARP on my Foundation One study in 2017. Now that doesn't show up. Nothing. Nada. So why the meds not working as well now?? And I don't know if they can get a tissue biopsy--- too small?? So how do we decide next step? What meds to change and to what meds next?
I was just taken back by the Guardant saying essentially nothing.
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Candy,
The simple answer is, I think, that the liquid biopsies just do not deliver enough information for a lot of people -- me included. If that 2017 info is in your records, your doc will likely use that to help decide next medication, etc.
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With the new Ibrance formulation, I’ve developed eczema. It appeared about a month into starting the poll form, got much better when I was off it for 3 months, and it’s come back fast since restarting. It’s working on the cancer thank goodness but I’d do anything to go back on the capsules
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Here's my question. Onc finally decided to do some testing on tissue samples. But he's using samples from almost 4 years ago that had never been treated. Can't wrap my head around how that could work
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Snooky,
I think that when they preserve tissue samples, they put them into slides. My guess is that that process is the same as what is needed to send samples to genomic testing services. Presumably they are preserved?
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Snooky- I do not understand either. Can't mutations change? That is what a mutation is. So your cancer could seemingly have more mutations than 4 years ago.
I do not understand all this. My liquid biopsy came back as no mutations seen, but I have had small progression. Why?
This cancer is confusing. And all MO's treat it differently. I don't know what is "right" and what is "wrong".
And if liquid biopsies are notoriously inaccurate, then why use them?
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Candy,
Shetland described what happened to her using liquid biopsies -- when she was off treatment, the liquid biopsy worked better. I also don't think that docs know that much about use of liquid biopsies -- I was in a study at my center comparing liquid to tissue biopsies to see if they match up. As part of that, they also did a ctDNA test to see how many cancer cells were floating around in my blood. When the results of that one came back, they found 3 cancer cells that they could actually match up with active cancer and 5 that were in some state (I don't remember the description) that basically my oncologist said -- oh, these could be nothing or they could be in the process of turning into cancer cells. So we don't really know what this means.
Huh? That floored me. And she was the one leading the study. But I think this just proves that they are learning how to use all of these tools effectively. You seem to think that bc the liquid biopsy showed no mutations for you, that there are none there. I don't think that is what that test is telling you. From personal experience, having had two tissue biopsies and a liquid biopsy, the two tissue biopsies validated each other. The liquid biopsy picked up one of my mutations, but not all. It was sandwiched between the two tissue biopsies, so we know they were valid. I'd describe the liquid biopsy as incomplete.
BRCA 1, which showed up on your initial tissue biopsy, is a germline mutation, if I'm not mistaken (someone correct me if I'm wrong.) So that's still there. And the other mutation that showed up -- I don't recall fully what that was -- showed if I remember correctly that you could use parp inhibitors. So I think those are still legit findings for you.
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Every so often I drop back into this thread, even though I stopped taking Ibrance last September when I became increasingly ill with what turned out to be medication-induced pneumonitis.
I am happy to report that recent scans show my lungs to be much improved, and that Faslodex is holding down the fort on its own.
More good news as of last month: my hair is no longer thinning!
Tina
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This is on cancer.net regarding looking at older biopsies:
4. Biopsy samples are safely stored and secured to help manage future treatment.
Federal law requires laboratories to safely store specimens for a set amount of time. For example, cytology slides, like Pap tests, are usually stored for at least 5 years. Other types of stained tissue slides are typically kept for 10 years or more. Paraffin blocks (material where tissues are usually processed) are retained for at least 10 years. Some states may require even longer storage periods.
By saving biopsy tissue for a long time, the pathologist may review the primary tumor if a patient has that cancer come back or spread in the future. By looking at the sample again, we can find out if the original primary tumor has come back or if it is a new cancer. We also may review the samples again if new treatments based on a tumor's genetics become available. At other times and only if the patient gives permission, biopsy samples may be used in research to help discover new treatments and targeted therapies.
LINK: https://www.cancer.net/blog/2016-05/biopsy-5-things-every-patient-should-know
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BevJen- One good piece of news---- I called the billing dept of Guardant today. To ask about my responsibility after insurance and see about financial assistance. I was told I will not receive a bill for the test !!!! That as the test was "cooking" so to speak they looked at my insurance, co-pays, and "other factors" she said and said I do not have an outstanding bill. What "other factors". But, hey, not looking a gift horse in the mouth. Especially since the results really didn't seem to help me. I don't have to be out any money for the "worthless" results.
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Yay, Candy!!! That's great!
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Thank you for all of you trying to explain this to me. When I met my new ONC about three yrs ago I asked for a Fountain One test. He said oh it's way too early for that the cancer hasn't had a chance to mutate yet??? The only way this makes sense to me is, they take an old preserved cancer slide and somehow put some current cells on it to have them mingle? I'm sorry, I simply do not understand.
I have a ONc visit this coming tues. I will ask and ask until it sinks in. My one problem is understanding his thick accent. This is my issue alone, My son understands him.
Bye the way, i'm currently on my 5th day out from Havelen and if this is as bad as it gets than I am so greateful.
Thank you all my friends
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Tina, I skipped right over your good news. Congratulates!
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Has anyone taken a voice recorder to an appointment? Is tis an ok thing to do?
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We have all our appointments by teleconference now, and I record them all. I took a recorder with us when we saw the an oncologist at Mayo Clinic, but I asked his permission to use it. I explained that it was because I simply would be unable to take notes fast enough and doubted I could remember every word later. He reluctantly agreed.
I also asked our current Onc about doing a fresh biopsy for testing, and she explained that the original biopsy would contain all the mutations they could currently scan for. Not saying I believe her, but that's what she told us. Flies in the face of acquired mutations spurring growth or resistance to treatment.
By the way, my wife switched from Ibrance to Verzenio around 4 or 5 months ago. The verzenio has strongly reversed the trend of rising tumor markers and lowered them significantly. However, my wife suffers from much more fatigue using the verzenio.
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jensgotthis: I know quite a few women who went back on the capsules because of negative reaction to the tablets. Pfizer originally announced they were discontinuing the caps, but they haven't, because they received so many complaints.
First step is to call Pfizer and report your side effect, at 800-438-1985. Then tell your oncologist you reported it, and ask him/her to write your scripts "Capsules Only".
Good luck!
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I've posted this before but deleted because I didn't want to alarm anyone with my opinion. And this is my opinion only. I have nothing to back this up. But it seems that there have been quite a few of us that have progressed on Ibrance since the new tablets. I mean if it can cause different side effects, what else could it be causing?
Mods feel free to delete this if I have overstepped in my opinion.
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I think you may be right. In the almost 2 years I’ve been on ibrance my markers haven’t moved. Labs last week showed a small increase. MO poked around, agreed markers aren’t always reliable, ordered a PET. I asked if stress could cause this, as lab was drawn day before DH went to inpatient hospice. He said it could.
The timing just seems very strange to me. I also can’t tell DD I may be up for a 3rd go round, as DH passed Monday night.
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Sending you much love, Spookiesmom, I'm so sorry for your loss. Hugs from SF.
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Oh Spookies, I didn't realize your DH had passed. I am sorry to hear of your loss - that is a tough road to travel. Be kind to yourself!
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Spookies,
Thinking of you and wishing you some peace.
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Spookiesmom...I'm so sorry for your loss.
I wouldn't be shocked if a year from now the tablets are pulled.
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Spookiesmom-So sorry for your loss. May God comfort you.
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Spookiesmom - I am so sorry for your loss. My prayers to you and your family
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Spookiesmom, I'm so sorry to hear about your husband.
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Spookiesmon, I am so sorry for your loss. Sending you virtual hugs.
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Spookiesmom, I'm so sorry about your loss. I'm holding you close to my heart as you grieve.
Love from PatGMc
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Sppokiesmom, I am so sorry to hear about your husband. Sending my love to you and your daughter.
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Spookiesmom, I'm so sorry for the loss of your husband.
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