admittedly have little knowledge of testing for mutations....but wanting to learn more. have picked up a bit on this site and doing some research. very interesting.
anyways, found this article (link below)that shows correlation between amounts of the Pik3CA ctDna (circulating tumor cells in DNA) in blood and whether Ibrance is an effective treatment for your specific mbc. maybe this is old news (the article is 2018) and maybe you already know this info. but posting just in case it is helpful. and not sure if this can be done in 'real life' if ordered by the oncologist or if just done as part of the study? but my guess is that it can be ordered. wish i could say for sure!
i like this idea of testing to see if a treatment will be effective for you. as far as ibrance, at present, i believe most of you wait until your first scans after starting Ibrance treatment before determining whether it is working or whether you need to switch meds.....usually taking 2 to 3 months to know. yet with these two blood tests...two weeks apart....you would know in two weeks! that's a lot less time than waiting for scans, especially when having anxiety over the outcome. and also, it would help make decisions easier when deciding benefits vs. risks, since all of our mbc meds come with both. but personally, i would be more inclined to try a specific treatment if i knew that it was a good match for 'killing the cancer'.
i have also heard that many insurance companies don't like to approve 'testing' due to high expense. as mentioned by someone else on this site, that makes no sense as the insurance costs are so high for a lot of the meds, especially the CDK4/6 inhibitors. wouldn't it be more cost effective for insurance companies to pay for the testing? or am i missing something?
sending hugs to all and best wishes for a nice weekend....
I scanned the article (best I could do, long travel day!) but nonetheless (!) have a couple of comments...
I have a question, in general: Do they mean, like, completely ineffective, or just *probably* less effective?
I relate this to the genomic testing/liquid (blood?) biopsies that identify mutations, and predict (sort of...) responsiveness to various treatments,
My genomic testing showed a PIK3 mutation, but had a low % next to that...3%? I know of another patient whose % was much higher....maybe 9%. So I asked my doc "Does my low % mean that it won't work or will it work, just less well (on average), or what?". She said: These tests are all new, we need a lot more experience to understand their significance" (or similar...).
I got that and absorbed it....
...In part because, e.g. *I* am not a great candidate for the hormonal treatments, i.e. my hormone receptivity at mets dx was something like 45% ER, 0% PR, down from 95% and 75% when dx'd earlier stage. If we follow that trend line, I'm like triple negative (like my sis) at this point (not that I'm assuming the trend has held). Whatever that measure of aggressiveness is (I forget) showed that mine was 2 out of like 3. My luminal type was bad but I forget the specifics. Yet....yet...the treatments for ER/PR+ have kept me going strong for 7+ years....
So my concern is that the medical community will give too much weight to these tests and projections. In my unscientific view? Try it. Every treatment that holds out even the slightest hope of helping.
I happen to believe that it's mostly about your body vs. the disease (aka "luck") and the meds...and other things we might do...."just" provide assistance, sometimes. We don't know 'til we try.
If some treatment might provide a little help, I'll take it and not ignore it in favor of taking only the big help, as determined by tests?
That's very much "just me"....So take it for what it's worth, which is admittedly not a lot...
But I'd hate for anyone to forgo a treatment that might help, even a bit. Okay, so you wait three months for a scan...and maybe even carry on to see a second scan at 6 months...? The goal is longevity x quality of life...
My two cents! Again, thank you *so much* for sharing, so valuable!
welcome home! hope your visit to Duke was productive and full of info....will be awaiting your update!
hmmmmm......so i had to read the article again and had to read your reply twice...lol. lots of info to absorb. gray for sure. but so much of this journey is....not much black and white.
i'm thinking probably 'less effective vs not effective at all'. i get your point. but there are scenario's where i can see it being very helpful.
i think of it as another 'tool' in the toolbox. and if it helps avoid some risks for a med that has little benefit....then use that info to help in your decision.....i.e...informed decisions. but if there isn't another better choice....than go for it. i just think this 'testing' concept is very interesting and will continue to progress (fingers crossed) and become more main stream in the future. well, once the insurance companies come on board since they run a big part of the show.
honestly, i too have a worry. if some mbc'ers have tumor markers that are meaningless (like me...whose are normal), how accurate is the amount of shedding of PIK3CA mutation into the ctDNA in the blood?
'testing' gives us something more to think about😉
thanks for the 'thoughtful' reply! food for thought.
rest up!
carole xo
ps. you are a 'grade' 2 in aggressiveness. and yes, ranges from 1 to 3. i was a 3. and i do not know about my % of ER/PR. haven't been tested in 4.5 years. you would need a biopsy...correct?
Thank *you* for your thoughtful reply! I had written then struck something within my response about "I totally don't mean to be pushing back!", and I mean it! Just pondering, publicly! And typing quickly...*love* the info...folding it into the mix!
And, yes, I *think* those %'s come mostly from a biopsy (like, physical sample) but I seem to recall some notation on my more recent genomic testing? Not sure...but the %'s that I reference re: myself were from physical sample (?) biopsies...
I was dx MBC in November of 2019 and my oncologist did test me for the PIK3CA mutation before I started Ibrance . I had the biopsy results from my tumor and they were highly er/pr+ and her2- . She started me on fulvestrant while we waited for the PIK3CA results . I think she said if I had it Ibrance probably wouldn't work well or for as long ....I have been doing well on Ibrance and fulvestrant which is a blessing (29 months on this tx).
hi Aprilfoolz1. great to hear you are well doing well on ibrance/fulvestrant for 29 months and still going! yay! curious on the results of your PIK3CA mutation test? i don't think you mentioned.....
I'm fairly new to this site and don't know if I can edit posts ? I wanted to add that on fulvestrant and Ibrance I achieved NEAD within 6 months of starting and so far have continued to be NEAD on scans . I was 55 when dx Stage IV and just celebrated my 58th bday. Fingers crossed we all do well on the meds we take !
I was diagnosed around Jan, 2017 and put on Ibrance/letrozole and quarterly Xgeva shots for bone mets. Saw improvement on scans after 3 months. Mets are gone and tumor activity has decreased/remained stable over almost 4 years. Ibrance stopped working when I had scans 12/2021. They did genetic testing which Medicare did not pay for, but my supplemental insurance did - it wasn't that expensive, maybe several hundred dollars. I have like 38% of the mutation. Dr. wanted me to go on Piqray, but I declined. I'm not going spend the rest of my life (I'm 75) with diarrhea, mouth sores, elevated blood sugar, etc. So she put me in tamoxifen which has caused tumor to decrease. We'll do scans in June, and if I'm still stable, we will discuss surgery to remove the tumor.
I tolerated the Ibrance pretty well except for losing my sense of taste. - water even tasted weird. I can now taste food for the first time in 3 years. I forgot how wonderful a strawberry or a honey crisp apple can taste.
I don't know why Medicare doesn't pay for genetic testing; seems pretty important to determine course of treatment.
Interesting about your % being 38....mine was low single digits! I'm now feeling even *less* optimistic about how effective Piqray might be for me when I try it!
Like you, I really don't want to switch to Piqray (when the time comes...) because of the side-effects I've read about, especially the high incidence of diabetes. But my doc told me that many people do fine on it, and I realized that *every* drug comes with a long list of *potential* side effects...Most of which I've never experienced.
So I concluded that - again, when the time comes - I'll try it. Why not? It's the only way to know if I'll have issues and if the side-effects aren't bad, then this med will add quality time to my life!
...And that's my thinking at a low %....with 38% (if I understand what these %'s indicate), I think you have an even more compelling case for just trying it to *see* if you have any issues...you can always move onto something else?
Yeah, I thought of trying it to see if I can tolerate it. Then you're taking imodium all the time for the diarrhea, or something to lower your blood sugar, and on and on. I don't know if there is any treatment for mouth sores or rash. I have HBP, congestive heart disease, 2 artificial heart valves and take a handfull of pills every day. I'm tired of pills and feeling crappy all the time; I don't need another treatment that'll just make me feel worse.
hi Southside25. i imagine quality of life is extremely subjective. based on many factors that influence...i.e...other co-morbitities, lifestyle, uncontrolled pain, support team, loneliness, finances or lack of, ability to perform ADL's, general overall health, fatigue, acceptable vs unacceptable side effects, age, mobility and on and on and on. can truly only be determined by the individual.
out of curiosity, did your oncologist mention putting you on Faslodex(fulvestrant) vs tamoxifen? i was on letrozole only(for the past 4.5 years) and just this week made the switch to monthly Faslodex injections because of new mets to several lymph nodes in neck area. Faslodex is also an estrogen blocker and recently i have learned a lot of info stating that it is a 'superior' estrogen blocker with very little side effects and many mbc'ers have good outcomes. i was a bit nervous of the injections as i had heard stories, but i personally found the injections very tolerable! we are all different. and i have no noticeable side effects. just throwing it out there.
interesting that your supplemental insurance plan covers the genetic testing and yet medicare does not. like you said, it is an important diagnostic tool that can aid in deterring course of treatment! although i am pleasantly surprised that it was not that expensive. good to know.
wishing you the best on tamoxifen and fingers crossed for 'good' scans in June!
Yes, she wanted to put me on Piqray and fulvestrant. I said no to both. I'm close to being done with all of this. 75 is a decent life span. If surgery is not an option, I'll continue on tamoxifin until it stops working. Then I'm done...I think.
hope i am not being a bother to you and overstepping. i totally understand not agreeing to taking any "harsh" meds with bad side effects. i too opted out of certain meds for unwanted side effects. so i am taking fulvestrant alone. and i have to tell you....it is the best med i have taken thus far. zero side effects for me. and the injection was not painful....just a bit uncomfortable for a few seconds. that was my experience. in my gut, i just feel that it would be a more effective estrogen blocker than tamoxifen.....especially if you have 'almost' decided that you are done with meds after this last one. but of course this is your decision/choice. i wish you well.sending a BIG hug...
Oh, gosh, it does sound like it might be awful, you're right! Especially given the other issues you're dealing with. Even dealing "only" with the MBC, I hate being in this highly medicalized place (which I'll occupy forever, and increasingly, I suppose...). We each need to make our own decisions about what we're willing to try and determine what balance of pros-cons works for us...
Intermittent Diarrhea with piqray is manageable with Imodium, but not pleasant, for sure. Interesting that tamoxifen is working well alone! I had 5 years of tamoxifen starting in 1995. It never occurred to me as a possible line of treatment for MBC. Best wishes for continued success!
They did a mutation test on my liver biopsy when first diagnosed with stage 4. Said I am low mutation burden of 3. I was on Verzenio and letrezole for 10 months. Achieved Ned after 6 months but got small progression after 4 months. Now on piqray and fluvesterant and have Ned after 6 months. Bones, l7ng and liver.
hi Kaylab. that is great news that you are once again NED👍. congrats to you!!!
so like i already mentioned.....i am in the midst of learning about 'testing'....so i am a beginner. but excited to know more as it makes so much sense to me. so when you say you had low mutation burden of 3, which mutation test did they perform? was if for PIK3CA mutation or a more 'general' test if one exists? please forgive my ignorance.
Thanks for the article! It’s exciting that there are advances in diagnostics! I was on Ibrance for 3.5 years. Now on Piqray for 1.5, a genomic match. But in between, I was on exemestane and evorolimus for 5 months and they caused more harm (to my lungs) than good. At least there are scans pending better genomic diagnostics!
I am on Piqray. It has a bad rap in my opinion. I am in remission for the MBC in the lining of my stomach and the numbers are stable in my rectal cancer. I am on one 150 mg at dinner. Yes diarrhea, no mouth sores, had hand and foot issues at the start, but cleared up quickly. Have a Libre to keep my sugar in check.
Sloan Kettering’s lab isolated the PIK3 mutation which is under Dr Chandarlapaty. He is one of my oncologists and I live 350 miles away. For an endocrinologist, Dr Foley at Sloan checks for sugar issues. He is looking for more people on Piqray, as he specializes in diabetes induced from medication. These doctors work with many hospitals. And my local oncologist checks with him when I changed treatment.
I had a heart attack so certain medications don’t work for me.
you have a top notch team....i'm sure that is very reassuring! and also must be a relief to know you are a great candidate for your PIQRAY treatment.
congratulations on being in remission for the stomach mbc and being stable with your rectal cancer! great to hear!
am i correct that you have lobular mbc? or a combo of lobular and ductal? my primary BC was diagnosed as both....although i think more ductal than lobular. not sure?
wishing you continued success with your treatment....
first...thanks for coming up with the word 'diagnostics'... the brain fog was thick and i 'wanted' that 'word' but couldn't come up with it...lol. 😉
so yes, i agree that these advances in diagnostics are exciting. but yes, we are very lucky to have routine scans for diagnostics as well. and great for you that you got 3.5 years on ibrance. and now on Piqray for 1.5 years, being a genomic match👍....great news! (sorry to hear about the harm to your lungs on E & E)
Hi Carole,Like you, I'm struggling to figure out the biology behind these targeted drugs, and possible testing for mutations. I'm reviewing some of the early studies, but finding it slow-going. I'll get back to you privately when I've figured out the best references.
Anyway, I just wanted to let you know, for this thread, that my oncologist explained to me that PIK3CA testing was done when he sent my liver sample for a biopsy a year ago. My understanding is that my liver tumour indicated "40% PIK3CA mutation" (similiar to Southside25's results below). My oncologist was pleased for two reasons: (a) to him, this meant he would be allowed, given Saskatchewan formulary rules, to put me on another targeted drug instead of chemo, and (b) he wants to run a clinical trial on Piqray.
Fortunately, my last CT scan indicated that ribociclib is having a positive effect so I don't have to make a decision about Piqray which does seem to have extreme side effects in many people. I'm intending to ask my oncologist whether the testing for PIK3CA mutations could also have told him whether or not other targeted drugs might work.
that would be great if you share your research references when you get to that point. thanks so much!
very interesting for you to know that you have 40% PIK3CA mutation. perhaps not a big deal at present...as you are doing so well on ribociclib....which is great news! but who knows what the future may bring and 'knowledge is power'!
i will be curious what your oncologist has to say regarding the connection between testing for the PIK3CA mutation and if it can also tell him whether other targeted meds may work. per the article, there was a connection between comparing how much ctDNA is circulating before you start ibrance vs how much that number decreases two weeks after starting ibrance. per the article, the more that ctDNA decreases during that two week time period, the better the chance for ibrance being effective against your mbc. i think i got that right? (i know you are not on ibrance, just using that as example as that is what the article had studied). and very curious if this same testing effects the outcome of Kisqali and Verzenio as well? i also realize the article is from 2018 and maybe they know much more in 2022. lots to think about😉.
curious if you have already been on ibrance? and if so, how long?
thanks for your reply and best wishes for continued success with ribociclib!
I refused Ibrance when it was prescribed by the first oncologist assigned to me in 2019. I am a socialist, and I didn't like the cost of Ibrance to our health plan. Also, I had tolerated tamoxifen well as adjuvant treatment between 2006 and 2011 so I wanted to try it first. I asked for a second opinion which shocked everyone at the cancer center (Canadian patients are very compliant).
The second oncologist was willing to prescribe tamoxifen but was unhappy when I told him I was taking 40 mg. not 20 mg. (there was a study in Europe which suggested that many MBC patients likely needed a heavier dose). Even though my cancer marker was at its lowest level at the end of a year, and my CT scans indicated no progression, he indicated that I wasn't allowed to take a double dose, after the first year.
Since I had no way of knowing for sure that I needed a double dose, and my emails to his supervisors had no impact, I took a single dose of tamoxifen for the next year, and this led to progression. When he then refused to represcribe tamoxifen, I took a three-month treatment break before getting my GP to check my bloodwork which showed my cancer marker at its highest level ever, so I reconnected with my oncologist who then prescribed ribociclib and letrozole.
Saskatchewan has two universities but neither receive high ratings. Our oncologists receive ridiculously high salaries after having had their medical training subsidized, and being cross-appointed to the university. My oncologist is a charming fellow originally from Egypt but, he simply doesn't read any research, have any ideas beyond his practice guidelines, and simply prescribes within the limits of the Saskatchewan formulary.
My treatment costs me nothing (except the $300 I lost trying to import a supply of tamoxifen from another country - customs confiscated it) so I'm grateful for socialized medicine but I wish more was required of our medical practitioners. However, this forum has taught me that the limitations of Canadian medical practitioners are shared by the medical practitioners in most other countries.
It seems to me that medicine as a discipline really has not progressed that far since the days of blood-letting in barbershops. We seem to be totally dependent on the biologists working in labs for big pharmacare for any future advances. I don't think the concerns and well-being of patients are in the forefront in most places.
In my old age, after a lifetime of caring for others, I'm becoming quite the cynic!
thanks for sharing your history and views. ultimately, we want to hold doctors to a higher standard. and we want to believe that they have all the answers. but like all professions, they vary greatly. having worked so closely with so many docs over the years, i'm acutely aware that 'they' are not all created equally. some are top notch and think outside the box, some are good enough, some practice cookie-cutter medicine, and some are just plain incompetent. my deceased Dad, bless his soul, was a very intelligent man....and yet he judged doctors by their bed side manner and not their medical competence. but he was from the era where he believed doctors to be 'God-like'.
i'm sorry to hear that your oncologist would not entertain letting you stay on the double dose of tamoxifen for more than just the one year. i love that you at least tried to import tamoxifen, although disappointing to have it confiscated by customs. but i would have tried to do the same! made me smile.
i respect your convictions as a socialist. and yet, for me, even being in the US, it is hard for me to wrap my head around a med like ibrance that costs more per year than my yearly disability income. how would/could you afford that and still be able to pay rent? honestly, even back when money was not an issue for me, i felt the same. i have issues with Big Pharma getting wealthy off of our collective pain and suffering....but will not go there today. (my opinion, my thoughts). i'm feeling very exhausted today and pain levels are high.
I wondered if you read this article on the National Cancer Institute website:
FDA Approves Blood Tests That Can Help Guide Cancer Treatment, October 15, 2020, by NCI Staff
Basically it discusses two liquid biopsies ( Guardant360 CDx, FoundationOne Liquid CDx) recently approved for diagnosis of lung and pancreas cancers. It states,
"Doctors have traditionally based treatment decisions on features like the organ in which the cancer started growing, whether the cancer has spread, and whether the patient has other health conditions. Now they often use another feature to guide treatment: genetic changes in the tumor.
Certain therapies, called targeted therapies and immunotherapies, work best against tumors that have specific genetic changes. The newly approved tests identify genetic changes, including mutations, by scanning DNA that tumors have shed into the blood. Doctors can then use that information to determine if there is a targeted therapy or immunotherapy that is likely to work for the patient. Analyzing genetic changes in a patient’s cancer is called tumor profiling, genomic profiling, or tumor sequencing."
Unless there is some other announcement I've missed, it doesn't seem likely that Guardant360 CDx is currently helpful in diagnosing whether or not a targeted drug is needed in MBC. However, I'll keep looking, and will email you via private message. I probably should have shared my history that way too!
P.S. I looked at the link to the interesting article you discussed at the beginning of this thread. I noted the following:
"Investigators found that the degree of decrease of PIK3CA in ctDNA correlated with progression-free survival (PFS), which is the length of time a patient lives without their disease worsening. Women with a smaller PIK3CA decrease had a median PFS of only 4.1 months, compared with 11.2 months in those with large reductions."
I concluded from this that one would need to have a liquid biopsy done before and two weeks after starting Ibrance. Online, the cost of a private Guardant360 CDx biopsy (which does test for PIK3CA mutation) is about $6000 American!
$6,000 (American) for just one test i assume? but two tests are needed (the one before starting Ibrance and then test two weeks after starting Ibrance) so $12,000 total? for US patients, hopefully insurance pays for some of it? either way.....ouch! that's a lot of $$'s.
although just a drop in the bucket, so to speak, as Ibrance costs $15,000/per month...before insurance? i don't know how much people actually end up paying per month for Ibrance in US?
but i suppose the 'testing cost' would be money well spent to determine if Ibrance will most likely be a match against your mutated mbc. thinking out loud. ('publicly pondering' as Lynnfish would say😉)
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