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  • [Deleted User]
    [Deleted User] Member Posts: 760

    imagine

    Yes I am on ARV 471 mono therapy . I travel to Sarah Cannon Research institute in Nashville. It is only a 2 hour drive there and totally manageable for me. If I need to stay overnight they get me a hotel. I will get mileage reimbursed sometime in the future. I go every week for a month then every other week. It requires a biopsy before and at 6 weeks.

    Like Nkb said the serca and ceran studies are also possibilities. I didn’t qualify for those. I agree with MargaritaMS that if you qualify for Keytruda you should really investigate that. Especially considering some of the studies that say it shows better results sooner rather than later.

    DEE

  • margaritams
    margaritams Member Posts: 183

    BevJen, I’m happy to elaborate on my Keytruda experience. I am on the 3 week cycle with no plans to switch to 6 weeks since I also get Herceptin every 3rd week anyway. The main side effects for me are fatigue, muscle ache & weakness as well as some allergy-like sinusy issues - fairly manageable stuff. I am pretty heavily pre-treated though so not so easy to know exact cause-effect. I’m gonna pm you.

  • cure-ious
    cure-ious Member Posts: 2,891

    So, an interesting study came out, looking at why a variety of cancers that had metastasized to liver had worse overall responses to immunotherapy. Responses to chemo or targeted drugs were not affected but immunotherapy worked worse- why? It seems that the liver mets were attracting, sequestering, or eliminating T cells (the write up does not make clear exactly what was going on), which led to a systemic reduction in overall immune activity that could not be easily overcome by immunotherapy. But then when they tried radiating individual liver mets, this reversed all of the problems and made immunotherapy work. So, I guess the conclusion is that if you are going to take immunotherapy, and you have liver mets, might be a good idea to get some of those liver mets zapped beforehand. And I guess it also suggests that getting liver mets zapped also improves your overall immune system function, even without immunotherapy drugs, so there is an added benefit beyond just getting rid of the individual mets.

    Of course others have suggested using NSAIDs or autophagy inhibitors to boost immunotherapy, its getting to be a long list of things that might enhance the response to immunotherapy drugs...

    https://www.sciencedaily.com/releases/2021/01/2101...


  • BevJen
    BevJen Member Posts: 2,341

    Cure-ious,

    Thanks for posting that. Of course, it freaks me out (with my liver mets) because I am set to start immunotherapy next Tuesday. Having recently had two bouts of microwave ablation (Oct. and December) I'm hoping that that's enough radiation to give me the needed boost. I do know that there have also been articles published that show that cryotherapy and immunotherapy play well together -- I've actually discussed that with my interventional radiologist.

  • moth
    moth Member Posts: 3,293

    BevJen - my liver mets have so far responded well to immuno and I've never had an local treatment to the liver. I AM hoping for abscopal effect from the lung rads in Dec but it seems pretty rare.

    & speaking of combining rads w/ immunotherapy: We had a longish discussion when planning my lung rads about whether to stay on immunotherapy or not during rads. There is some info suggesting it boosts effects of both but also, some data that it can increase risk of pneumonitis. In the end, the cautious recommendation was to drop the 1 dose that I would have had right in the middle of rads. I did have one about a week before, and I'll have another 2 weeks after finishing, My MO keeps saying that we have no clue how the immunotherapy really works *long term*. Do we need to keep giving it? Does it act like a vaccine in that once the immune system understands what to attack, it just does it? Do we need to keep retraining it? There's little data on this so we're all still sort of guinea pigs.


  • BevJen
    BevJen Member Posts: 2,341

    Moth,

    Thanks for that info.

    I shot off an email to a guy at UCSF who has published some on this issue. (liver mets and immunotherapy). I don't think he'll respond, but perhaps he will.

    And yes, sadly, we are sort of guinea pigs here, aren't we? I was almost put on atezo in Oct. 2018 when there was some thought that my bone mets were increasing and the I/F therefore wasn't doing its job. At the time, there was a trial going at Hopkins with that drug. But then we decided to stick with I/F a bit longer, and so I ended up getting 18 months out of that treatment. But -- and I know this sounds weird -- I feel like I've been given the chance once again to get on an immunotherapy (this time keytruda, as I've said) and I feel like I should do it to see if it could work for me.

  • [Deleted User]
    [Deleted User] Member Posts: 760

    Good discussions about immunotherapy. I wish I could go down that path but that door seems closed to me.

    reporting in- all my liver enzymes are normal for the first time in weeks!! I am hoping the spike in enzymes was tumor die off. 🤞🏻

    RBC & WBC are climbing back to normal. only thing I can’t seem to get normal is my magnesium. I now take 9 pills of slo-mag(only brand that doesn’t give me D) a day and have had several infusions over the last few months. Anyone have suggestions on how to increase mag?

    I asked Dr Hamilton about the new estradiol based PET. They don't offer it in Nashville. She didn’t seem too excited about it-wants to see more studies.

    Dee

    BevJen- I hope you get an answer back from UCSF. I had a doc from there answer me directly.




  • BevJen
    BevJen Member Posts: 2,341

    Dee,

    My MO at Hopkins said that the new estradiol based PET is not yet widely available. The closest to the DC/Baltimore area, to her knowledge, is at U Penn in Phllly. Also, I think that it's not yet FDA approved, except in extraordinary circumstances, so there's that tricky little issue of insurance coverage as well.


  • cure-ious
    cure-ious Member Posts: 2,891

    Well, I am in even a worse place in terms of scans, my MO says my "insurance" will only pay for CT scans. I used to get PET-CT on work insurance, and then switched to medicare with a similar work insurance (retiree) plan as secondary coverage. My latest bone scan indicates some minor spots of progression, tho not enough to switch meds or to bother radiating, and my CEA is drifting upwards and is now just outside of normal range. I told my MO I want a PET-CT, as its been nearly a year since the last one and these alarm bells are ringing, if even just a bit, and she said she'll try again for approval but is doubtful. It's insane to make decisions based on the absence of data, but maybe I should just switch up meds now? since I will not be able to get any definitive results from a CT scan? Apparently PET-CTs cost $5K, so I can't pay it out of pocket.. I don't want to short circuit a more-or-less working therapy, but I'd also like to stay in good enough shape to get into some clinical trial where they scan me up one side and down the other every couple of weeks. OTOH, with another drug combo I'd eventually get back to the same problem of not a definitive scan. It seems I am doomed really, unless I move over to Kaiser where they always do PET-CTs? Right now I'm refusing to do another CT...

  • BevJen
    BevJen Member Posts: 2,341

    Cure-ious,

    Did you ask your MO which insurance wouldn't pay? I think that Medicare is your primary in this instance, but perhaps I'm wrong. If I'm right, though, this seems to be the refrain of many MOs. I came up against this last year when I wanted a PET and was told "your insurance will never pay for it." However, before I was treated at my current center, I had had PETs on Medicare, and they were paid for. I believe I raised this on the bone mets thread, and there were several people there who told me that they regularly get PET scans on Medicare.

    I guess what I'm saying is that this may be the equivalent of an urban myth among MOs. I'm not sure. I haven't had a PET since I switched MOs, because then I started getting MRIs of my liver every three months. That, coupled with CTs and nuclear bone scans, plus a few other MRIs thrown in here and there, seemed to provide pretty good info.

    I would push back. Unfortunately, if you call Medicare and try to get an answer on this, you likely won't get a straight answer. But you could always try that as well. I haven't researched this for a while, but I think that the last time I researched Medicare guidance on PET scans, it did say that they were allowed for purposes of restaging. You could also try that, because the advisories are available online (although, again, not the easiest things to find.)

  • cure-ious
    cure-ious Member Posts: 2,891

    Hi BevJen, Yep my Medicare is my primary, and I will ask them which insurance is denying it. In your case, how long did you go just having CT scans, and are you now on the same medicare and supplement insurance, in which case how do they now approve MRIs, which are even more pricey? When you changed MOs, was it because of the scans, and is your new MO in the same medical system? It makes me crazy that the most dangerous part of the disease we are not even to get scanned for- do you think I should look for a supplemental insurance that would approve that or most of them won't? THANKS!!! I do not like wasting my precious life on stupid stuff like this!!

  • BevJen
    BevJen Member Posts: 2,341

    Cure-ious,

    I am on the exact same Medicare insurance (parts A & B) and supplemental insurance (United Healthcare/AARP) that I've been on since I turned 65 (I'm 68). It's the same combo I was using with my past MO. (Did not switch due to scans; switched for other reasons too elaborate to explain here.) Both MOs are in the same system, although one is what's known as a community physician (so all billing done through her office -- that's the original MO) and the current one is part of a large hospital system/cancer center where the hospital does the billing.

    So, I switched in May 2019. Just before that, I had had a PET, a CT, a nuclear bone scan, and an abdominal MRI. The new MO has only used CTs and later this week, I'll have my second nuclear bone scan. No issues with any of them and Medicare. My interventional radiologist orders liver MRIs to follow up on my ablation procedures. Basically, I have them every three months like clockwork. No issues with payment on Medicare. This past summer, I asked my "old" radiologist, from my original diagnosis in 2003, to go through all of my scans and to tell me what she was seeing (my MO doesn't really read my scans, but looks at the reports instead.) She did that, we met via video conferencing several times, no issues with Medicare. She also ordered full spine MRIs to try and sort out what was degenerative disease (I have a lot) and what was disease from cancer. Because one part of the full spine MRI was questionable, she then ordered a skull series MRI -- also no issues.

    So there you have it. Medicare pays 80% of the reasonable and customary charges (most providers who take Medicare just accept that even though it's not retail price). My supplemental plan pays the other 20% (again, based on reasonable and customary charges). I have gotten no bills for any of my scans.

    Also going to PM you.

  • [Deleted User]
    [Deleted User] Member Posts: 760

    Cure-ious

    I am sorry you are going through this tangled web of Medicare and insurance. I hope you get your PET approved. you don’t need this stress. We all need an Angel advocate who will navigate this jungle for us so we can get the best care possible. Our lives are at stake!

    FYI- my liver MRI found small diffuse tumors that the PET did not pick up because they were too small.

    On a side note- my 2 trials only use CT scans every eight weeks. They did want a recent bone scan and the arv-471 wanted an echo. The radiologist mostly comments on the reference tumor with measurements since they know it is for a trial. He did mention my y-90 tumors as necrotic(no measurements) and the diffuse small tumors in the liver were slightly larger (no measurements). if you are symptomatic the trial MO would order one sooner. When I asked about MRI for the liver being better, the PA just said they like the ct. I know every trial is different.

    If this trial fails, I will be getting an MRI and a PET on my private insurance. Before going onto the next line.

    You are a great resource and encouragement to us. I hope you get through this hiccup quickly.

    Dee

  • [Deleted User]
    [Deleted User] Member Posts: 760

    I just saw this trial matching trial. I don’t know anything about it but thought I would pass it along.

    SYNERGY-AI: Artificial Intelligence Based Precision Oncology Clinical Trial Matching and Registry

    De
  • cure-ious
    cure-ious Member Posts: 2,891

    Thanks, you guys are the best!! I'll wait and see if my MO can get a PET-CT approved but already decided that I will just keep on with the CT if that is the decision- at least I will have saved myself some radiation. It's very helpful to understand that these scans miss a lot, and also that Medicare will allow the scans if an IR orders it. I am going to get bloodwork Foundation One testing for the first time, so if they find some significant ESR1, for example, I know to go ahead and switch meds regardless of the other tests. If TMs creep up and up, will try Verzenio to see if that stops it, etc. Eventually I will get into a clinical trial and presumably some better scanning will be involved!

  • maaaki
    maaaki Member Posts: 105

    Hi Cure-ious, I am sorry about your problems with the insurance and the possible progression, you were doing so great on Ibrance. What about mri of specific part that seems to have activity on your bone scan? I go for MRI of my thoracic spine and abdomen every 3-4 months...but may be it is different in my country. The insurance here has a problem to pay for CDK4-6 inhibitors, but scans are ok.

    Regarding liquid biopsy, I did it last november when I had small progression into two vertebra close to my original met. It did not show nothing reasonable for the treatment. Mutation burden-undetermided, MS undetermined, and none of the mutations I had previously found in my liver tumor analysis three years ago. They caught only germline mutations (ovbiously if it is in every cell, I have VUS in BRCA2 and MSH6 and SUFU) and something DNMT mut-I found associated with blood cancer or older blood cells-so this is again something may be relevant to the CDK-4-6 treatment and stopping the blood cells mitosis. I payed for it 4000 Euros and did not get results I could use. So If you have small progression may be there is no enought ctDNA in the blood that tumor shed.

    I changed to verzenio from kisqali and TM are going slowly down (I am for 6 weeks on it), but I also had stereotaxy of these two new mets...so I dont know what is working but at least I think I could be stable for now. So Verzenio seems as reasonable choice.

    Good luck to all of you, I dont post much but learning so much of a great info from all of you...even though not much of the clinical trials that you have are avaible here

    Marketa

  • simone60
    simone60 Member Posts: 952

    I don't post much but I do follow this thread but appreciate all the information everyone shares. I am interested in clinical trials and will most likely join one at some time in the future.

    Cure-ious, sorry to hear of your progression. You had a long run on I\L, I hope to get that many years on the combo too.


  • sandibeach57
    sandibeach57 Member Posts: 1,387

    Cure-ious, I have had only one PETCT scan since Stage IV dx in 2016 and it was when progression was a concern (2020). Only the liver MRI showed an early concern along with rising Ca15.3. The PET scan didn't show anything, no abnormal uptake. But we were looking for liver mets, not bone.

    My MO told me from the beginning that PETCT scans can cause more questions than answers..maybe picking up inflammation. She does not routinely order them. She also felt the abdominal MRI was more sensitive than PETCT scans for those with liver mets.

    So these past 4 years, I get bone scans, CT scans and MRI. I do secretly wish I had PET to confirm if tumors are metabolically dead. But for now, I will use my labs, CA15.3, MRI and how I feel to find some peace.

    Sorry to use this trial thread..didn't know where else to respond to Cure's PET concerns.

    S

  • moth
    moth Member Posts: 3,293

    Marketa, hope your new treatment works very well. Bummer about the expensive but ultimately unactionable genomic test.

    Cure-ious, sorry about the progression. The headaches re insurance and scans are not what you need either. Hope it's sorted quickly.

    Greatful for this thread. Happy New Year everyone.


  • cure-ious
    cure-ious Member Posts: 2,891

    Thanks again, and Hi Marketa!! Well I am 5.5 years and still on firstline drugs, and so far at least my MO is not suggesting change. We are looking at Foundation One to say if there is any ESR1 mutation and she is appealing to insurance to do the PET-CT. An MRI would even be 30% more sensitive than the PET-CT, but it is even more expensive so insurance does not cover it. So far I am bone only, but if only able to do a CT scan, then I have to make decisions knowing that we are not getting any definitive information about potential liver or lung mets. So once we get the CT and Foundation One, then will decide what to do- maybe stay the course another cycle and test again, maybe try Verzenio with the Femara instead of Ibrance.. I am starting on the lowest dose of the statin Pitavastatin, because I want to kill off any mutant mTOR-dependent cancers that may be growing around, and am curious if it (or maybe moving to Verzenio) will do anything to the TMs..

  • chico
    chico Member Posts: 197

    Cure-ious I am so very sorry that you are going through the worry about possible progression and the hassle regarding getting the right scans. You mentioned perhaps trying V/I but what about pairing Verzenio with Fulvestrant? I had a blood biopsy a couple of years ago which didn’t show any mutations however my friend had exactly the same biopsy at the same time and it showed masses of things. Interestingly she has since had progression in line with the findings. Thinking of you and sending hugs.


  • phet7178
    phet7178 Member Posts: 57

    Cure-ious, I am sorry to hear about your progression. It sounds like your MO is on the ball though re what to do next, and staying the course or switching to Verzenio both sound good. I know other people who have progressed on Ibrance and then changed to Verzenio and it's worked well, so that seems a great option. When you say you're going to start on the statin - is that suggested by your MO or based on other research (I know statins are meant to be good for BC, though I'm only just starting to get into the literature on repurposing drugs). My MO is very loath to open the repurposed drugs conversation so I would like to look into metformin, and am trying to find a way to win her over :)

    My news is that I've finally acknowledged that getting the biopsy I need to get me on the Keylynk trial is going to take too long, given it's already been 8 weeks since I was diagnosed with lung mets and I've not been on treatment since. I saw a thoracic surgeon today who said he could do surgery to remove the smallest nodule to be biopsied on the 26th of Jan but I wouldn't be able to start the consent process to the trial until that point let alone treatment so it would all be too slow. So I've agreed to start chemo - gemzar/carboplatin - next week. The thoracic surgeon was very helpful and solution-oriented and is all set ready to help me get that biopsy asap so I can join a trial if gem/carbo doesn't work. But now I've committed to starting it I'm crossing my fingers it will work at least for a while, and that a great trial will be open when I need to change.

  • sondraf
    sondraf Member Posts: 1,683

    Phet- glad to see you were able to come to a resolution, even if it isn't quite what you were aiming for. All the same, if the trial was going to be run out of Barts, that Trust is under extreme pressure at the moment due to Covid (the Royal London has the largest ICU in the UK for instance, and sometimes shares imaging facilities) and Barts H itself had many floors of non-cancer, Covid-only patients in the first wave, transferred in from other areas. It could have been a risky situation for you (even though they do a ton of cleaning), so perhaps this all worked out for the best for the time being! Well done in finding that surgeon though, and good luck on your treatment.

  • cure-ious
    cure-ious Member Posts: 2,891

    Hi Chico!! Yes, of course Faslodex is an option as well. For sure I would move to Faslodex if the Foundation One indicates some significant ESR1, but if not I would make the change to Verzenio first to see if TMs move. If insurance considers me worthy of a PET-CT and there is progression to liver or lung, then of course its going to be Verzenio with Faslodex, or some kind of Verzenio-SERD trial. How are you doing?!!

    Phet- I have been on low-dose pravastatin for years, but dropped it when I developed a frozen shoulder, which I think was a cross-reaction of the statin with Ibrance. My cholesterol is not really high but close enough to borderline-hi that my PCP is willing to prescribe the lowest dose. But the main reason I want to be taking it is because statins are really good inhibitors of the Hippo pathway, and that can be up in some growth-factor dependent cancers. Not sure it'd do anything against estrogen-dependent ones, but if I have some mutant endocrine-resistant cells floating around, it might get them. Very unlikely on this low dose, but it makes me feel better.

  • cure-ious
    cure-ious Member Posts: 2,891

    OK, here is some promising news! Yesterday a report came out in a high-profile journal, Nature Medicine, from a team in Australia indicating a potential new treatment for ER-positive MBC, including endocrine-resistant cancers. The new study finds that androgens are in fact strong tumor suppressors for ER-positive breast cancers, and therefore androgen receptor activity is a good thing for fighting cancer. And drugs exist to increase androgen receptor signaling in cells. They find that drugs boosting androgen receptors are as strong or stronger than anti-estrogens, and can work in synergy with CDK4,6 inhibitors. They do not have the side effects anti-estrogens have and can improve muscle and bone health. They have seen success in phase 2 and phase 3 clinical trials will be starting in the second half of this year.

    https://www.eurekalert.org/pub_releases/2021-01/uo...

    Here is a YouTube video about their paper:

    And a summary of phase two results

    https://www.onclive.com/view/enobosarm-shows-clini...



  • susaninsf
    susaninsf Member Posts: 1,099

    Haven't visited for a while so trying to catch up.

    Cure-ious, I haven't had a PET in years. The SUVs were always moving up and down and Hope said you couldn't easily correlate SUV levels with progression/shrinkage because they were so changeable. Also, as you mentioned, it is more radiation. So sorry you are facing a possible treatment change. Always a hard place to be. I tried to get on Verzenio and my insurance rejected it saying I could only do Ribociclib (obviously not the same thing). I am now on a different health plan so we will see.

    Phet, Keytruda was a bust for me. Didn't do anything for my cancer and I developed terrible mucositis that I am still battling 14 months later. I do have relatively strong immunity after 16 cycles of Trodelvy so maybe the Keytruda helped in that arena. You may do just as well or better on conventional treatment so I hope you don't feel too dismayed about not getting into the trial. There are many treatments out there and it looks like you are just starting out with many options ahead of you.

    In reading my last scan in November there was this line, "Liver: 8mm hypodense lesion in hepatic segment 2 (5/28) is slightly more conspicuous compared to prior." I looked back and there was never any mention of a liver lesion. On further investigation, I was shocked to find out that I have had a liver lesion since May! I guess they don't know if it is cancer? I can't wait for these radiologists to be replaced by AI! They have made so many mistakes over the years and I can never trust what they say in the reports.

    Hugs, Susan


  • cure-ious
    cure-ious Member Posts: 2,891

    Susan, Thanks for that info, my insurance did approve the PET-CT scan and now my MO wants to do a videoconsult to go over what they found- I'm too scared to read the report but for sure this means progression and probably to liver, as she would not say we need to meet otherwise. So I'm lining up my options now, which at this point would be do a new biopsy, do the Foundation One blood test, and I will check out this ARV-471 clinical trial. Is the mention of your liver lesion coming from a CT scan? I've heard of others learning about liver mets this way as well, showing up gradually in successive scans, so maybe we often have micromets for a long time till they are big enough to show up definitively in a scan. You have been a big inspiration to everybody (!!!) and now almost at seven years metastatic with ER-positive cancer, its remarkable, helped along by this exceptional response to Trodelvy, does 16 doses mean you have been on this treatment for 16 months already?!

    I'd love to know what Hope thinks about the androgen booster, Enobosarm? I like the idea that some treatment could give good side effects on muscle and bone for a change.. Or the Immunotherapy booster Eganelisib- does the side effect you had from Keytruda mean you can't use it in combination therapies in the future, or was there a work-around? Thanks!

  • buttonsmachine
    buttonsmachine Member Posts: 339

    Regarding AR+ breast cancer treatments, here is the link to the drug page which should be starting phase 3 trials this year: https://verupharma.com/pipeline/enobosarm/

    Cure-ious, I was also excited about some of the "good" side effects of this drug, for a change!

  • BevJen
    BevJen Member Posts: 2,341

    SusaninSF,

    Thanks for posting, and happy that you are doing so well.

    What was the basis for you using keytruda? I ask because I am starting keytruda today. I have tumor mutation burden high, and that's the basis for trying it. I am just coming off I/F.

    And I'm with you on radiologist reports. It's a particular pet peeve for me.

  • susaninsf
    susaninsf Member Posts: 1,099

    BevJen,

    Adding Keytruda to my Abraxane regimen was my idea. I also added an NSAID, Celebrex, to the mix. I was not a good candidate for it as my TMB is only 5 and Abraxane was my sixth treatment, so heavily pretreated. Some women on this thread have had a fantastic response to Keytruda. For me, I experienced only the downside, and a downside I didn't know was possible, chronic mucositis. I think we are all hoping that immunotherapy will be the wonder drug and it has been for melanoma and kidney cancer, just not for breast cancer. The theory I heard is that breast cancer cells are too similar to normal cells so they don't elicit the same kind of response as, for example, melanoma.

    I have questions for you about microwave ablation to the liver. Looks like you have had it several times. I am for the first time looking into treating liver mets so would love to hear what you have to say about it. I friend of mine had Y90 and said it was the most painful thing she ever experienced. After a brief clearance of that half of her liver, she died. Liver surgery had previously been very successful and kept her NED and healthy for eight years during which she did some serious mountain climbing.

    Cure-ious,

    Happy you were able to get your PET approved! Thanks for your kind words. That's amazing that you have gone five years on a first-line treatment! The exceptional response you have had to Ibrance is likely to repeat itself through subsequent treatments. Progression and changing treatments are very scary but you have a long runway of treatments ahead of you.

    I have been on 16 3-week cycles so just under a year.

    All of us on this thread really appreciate your knowledge and responsiveness and we are here for you!

    Hugs, Susan

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