Are you currently (or have you been) in a Clinical Trial?

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  • bsandra
    bsandra Member Posts: 1,031

    Shetland, on previous topic of oligo - I notice slowly scientists' understanding of oligo is shifting. Some even talk about any number of mets to one organ because usually number does not matter - heterogeneity does. So if all mets, however numerous they are, are homogeneous, you need just one treatment that is working and they can be killed. The idea behind this is that "probably not all heterogeneity escaped from the main tumor", i.e. just "one cell" and that cell made whole growth in the liver, so liver can be full of homogeneous cells. That is also some "strange" state, not directly "oligo" which means "few" but many with exact same features, and cure could be possible if "correct" drugs are applied. This is why early disease and small tumors usually have better response to treatment = less heterogeneity. This is just hypothesis but I think it might be pretty plausible if we consider that disease was caught early enough and only few cells escaped primary tumor. Further mutations can happen later in that organ, of course, but there might be a window of time when cells are homogeneous and one treatment is a magic bullet. Ehh... hope I expressed myself well:/ Saulius

  • chico
    chico Member Posts: 197

    Saulius this is an interesting topic. Would you consider extensive bone mets to be in one organ?

  • nicolerod
    nicolerod Member Posts: 2,877

    Chico...I don't think so because thats not contained in 1 area they are all over your bones/body

  • chico
    chico Member Posts: 197

    Thanks Nicole I’m on my way to see my Onc for MRI results so quite tense and looking for straws to cling to

  • nicolerod
    nicolerod Member Posts: 2,877

    Chico I hear ya! Good Luck keep us posted (((((hugs)))))

  • simone60
    simone60 Member Posts: 952

    I asked my MO about "Oligo" because I had 5 tumors, all very small. My MO told me I wasn't considered "Oligo" because the tumors were in different parts of my body. The second opinion said the same thing.


  • illimae
    illimae Member Posts: 5,739

    simone80, it’s my understanding that oligo is generally less than 5 mets in 2 locations max. I had a single bone met and later 5 brain mets, I’m still oligo but just barely.

  • chico
    chico Member Posts: 197

    Nicole thank you and I am thankful to report that remain stable - now nearly 5 years. I think Illimae is correct it’s the number of mets in the organ that defines ologo status

  • simone60
    simone60 Member Posts: 952

    It makes sense that the tumors need to be in the same organ. I was just hoping at the time that I fell into the oglio group.

    Chico, Congrats on the good news. 5 years is quite a milestone. Have you been on I\L the entire time?

  • moth
    moth Member Posts: 3,293

    This is definitel a new hot topic and as far as I see, an internationally agreed upon definition of oligometastatic is still being hammered out. When trying to compare studies you have to see what each researcher defined as oligomets. I've seen defs 1-3 in 2 or fewer organs or fewer than 5 mets; the lastest round of SABR COMET trials expands to 10 mets or fewer and iirc does not count organs.

    Btw, there was a poster session at ASCO just a few days ago looking at favourable factors in oligematastatic presentation but it didn't do a definition.

    There's also a brand new article on Oligematastasis as a Spectrum of Disease (May 2021). Still waiting to get access to it as it's paywalled. https://cancerres.aacrjournals.org/content/81/10/2...

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  • sondraf
    sondraf Member Posts: 1,690

    This is something I've wondered about as well, especially bone only. I have three vertebrae with mets and the sacrum was radiated. Under some definitions that seems to be oligo, but my vertebrae are definitely not like a little dot of mets,they resemble what you would see in prostate cancer patient mets to vertebrae. Still, I get a sense that at least in the UK this is not something that oncologists want to consider widely at this point and while they know of the research, there is no way it will become standard of care and therefore paid by the NHS or private insurance.

    Saulius -- I get what you are saying about homo vs heterogeneity factoring in. How many ladies do we see with mutations starting and one set of drugs works for one part of the cancer but another area is growing because its a different hormone profile? So why not hit it hard at first (within reason) when its all the same and not give it a chance to seed differently or mutate slowly against targeted drugs? Then again, I don't think enough is known yet about how and why mutations start or occur. There is so much that just isn't known.

    Chico - well done on that MRI scan - congrats!

  • buttonsmachine
    buttonsmachine Member Posts: 339

    This discussion about ogliometastasis is interesting to me. After my local recurrences I was getting regular PET scans because I was high risk for MBC. My MO said we would catch any MBC recurrences at the ogliometastatic phase. Time went by and one spot lit up in my bone. Then I mentioned that I'd been having headaches and I got a brain MRI, which showed one area of dural mets which were probably introduced through the skull bones. I started Ibrance, and in the next 6-8 weeks the cancer just exploded throughout my spine and bones and dura.

    My window of being ogliometastatic was never really there, I think. I think even though I was NED before that, I think the cancer had seeded itself all around previously, and then woke up and became active all at once. But I don't know that. The other possibility is that it spread from those two visible bone spots in a very short interval of time. Maybe we will never really know, but somehow I think it's the first scenario.

  • susaninsf
    susaninsf Member Posts: 1,099

    Cure-ious,

    I was on Alpelisib (aka Piqray), not Alisertib. When I asked about Alisertib a couple of years ago, my MO said nothing was going with it. Has that changed? What is the current status of Alisertib?

    NicoleRod,

    I had over a dozen brain mets from my initial Stage IV diagnosis and I'm ER+/HER2-. I agree that they are most often found in HER2+ people but there are many of us with brain mets who are HER2-.

    I asked my MO if it was possible to become HER2+ and she said, "No". Bummer.

    Hugs, Susan

  • nicolerod
    nicolerod Member Posts: 2,877

    Chico great what meds are you what type of BC do you have


  • olma61
    olma61 Member Posts: 1,026

    About HER2-low - I was browsing oncology Twitter the other night and there seems to be quite a bit of buzz about treating HER2-low with Enhertu and possibly other treatments as well. I know the mods posted something and I also found this article- The *EXCITING* New Field of HER2-Low Breast Cancer Treatment.

    I hope the excitement means something good will be happening very soon so more people get access to Enhertu and any other beneficial treatment. Here is the article

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7957750/ (hopefully this hasn't been posted before.)


    edit - forgot to add there is a list of trials at the bottom of that articl

  • Deamo1
    Deamo1 Member Posts: 25

    Great info, thank you!

  • cure-ious
    cure-ious Member Posts: 2,897

    Congratulations, Chico!!!

    Five years on I-F is phenomenal!!!

    What a great start to the summer...

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  • karpc
    karpc Member Posts: 192

    The topic of oligometastatic has been of great interest to me. A little over 3 years ago when I was diagnosed with one 9mm liver met and one 7mm tumor in my lymph node (armpit), I pushed to be treated as oligometastatic. I was turned down at first by 2 oncologists, but then got approval from the tumor board for both to be ablated/removed because I was considered oligometastatic. My liver has remained clear since then. However, my lungs now have 4 small tumors (nodules) which have been slowly growing. They were there all along because once they became clearly visible on scans they looked back at the first scans and could tell they were about 2-3mm when my liver met was diagnosed.

    Two weeks ago, I got approval for SBRT for the largest lung nodule that is not responding to treatment like the others. I was surprised to see that the radiation onc wrote 'treatment for oglioprogression'. I think some onc's are old school and not supportive of the oligometastatic theory, but that may change as more studies come out supporting the theory. The definition is still murky tho. I am finishing up my SBRT. Days after I got the approval for the SBRT, I found out the nodule being radiated turned from ER+ to TNBC.

    BSandra, I think your comment about the heterogeneity versus homogeneity makes sense. I really don't consider myself oligometastatic, especially since my cells are mutating, yet I am happy that my doctors are becoming more open to treatment beyond only systemic. Whether we are oligometastatic or not, I think the trend towards receiving local treatment along with our systemic treatment is a step in the right direction. We need to remember that oncologists may be more wary of localized treatment, yet the radiation department is more open to the advancements in their field, so we often need to be pushy to get localized treatment in addition to our systemic treaments.

  • susaninsf
    susaninsf Member Posts: 1,099

    In my MBC support group of 61 women 45 or younger at first diagnosis, we have had two cases of Oligometastatic women being treated with a curative intent who are now early stage. I don't think there's much clarity about what defines Oligometastatic. Originally, I thought it was for de novo patients with just one metastatic site. Now it seems as though you do not have to be de novo and can have more than one mets site.

    I agree with you, KarPC, that perhaps we shouldn't keep switching treatments because we have a new tumor or a single tumor is progressing. We can use radiation or another local treatment for that area/tumor if systemic treatments are working everywhere else. I am experimenting with this now. I have progressed in the liver but stable elsewhere (brain, eye, breast, lung, bone). Staying on Verzenio+Exemestane and looking to do SBRT or some other local treatment for the two new liver tumors. Trying to stay on each treatment as long as possible since I'm running out of options.

    Hugs, Susan

  • bsandra
    bsandra Member Posts: 1,031

    Dear all, "oligo" comes from Greek and means "few" but numbers here ("less than 5 and not necessarily in one organ") are hypothetical, as researchers observe that people with <=5 metastases have better outcomes. But some other analyses show that it is not the number that defines good outcomes because... what if it is 6 visible small tumors? So with 5 you go for curative intent and with 6 not? Does not seem logical because data shows that these who were treated with >5 also had good outcomes, so, of course, response here has nothing to do with number. There's a study "Prognosis for Patients With Metastatic Breast Cancer Who Achieve a No-Evidence-of-Disease Status After Systemic or Local Therapy" that observed the following:

    "Similar questions pertain to our observation that 1 site of disease was associated with a higher likelihood of NED and improved survival, regardless of the number of tumor deposits within the visceral organ or bone. A recent study of more than 700 patients noted the same association between survival and the number of organs containing metastases; in that study, for each additional site of disease, the risk of death increased by 18%.20 Although this approach to categorizing tumor burden may be simplistic because of the heterogeneity among MBC patients, there is no standard classification system. Furthermore, although the prognostic benefit of single-organ involvement is not included in the classic definition of oligometastatic disease, perhaps the number of organs involved is a surrogate of tumor plasticity. Because acquiring the capacity for organ-specific colonization has a temporal component, multivisceral involvement may indicate that micrometastatic disease has been present for longer periods, and this leads to a poorer outcome. Also, genetic diversity is required to colonize dissimilar organ microenvironments; this diversification may promote the emergence of a clonogenic population resistant to therapy and lead to poorer outcomes when multiple sites are involved. Despite some uncertainty about the explanation, our observation that single-organ involvement portends better outcomes suggests that clinicians may need to expand their definition of oligometastatic disease for MBC."

    My main point is that when you 1) are young or feel strong, 2) are willing to hit it hard, 3) have de novo stage IV disease or have just recently progressed to stage IV from early stage, YOU HAVE TO BE GIVEN TREATMENT WITH CURATIVE INTENT! How the hell are we going to cure stage IV if not with this attitude, I am referring to both patients and oncologists... Just look, stage IIIC can be cured (people do not relapse) but who could 100 % claim that some of IIICs were not stage IV on micro level?

    So, dear Chico, if you ask me, I do not care if you fit into "oligo" category or not but if you are "stable" for 5 (my gosh, 5!!!!!!!) years in bones only, there's certainly something specific about your disease, and if I were your MO, I'd definitely silently try to CURE YOU! I know many of you would say "oh, we have to be realistic" but please... not one battle was won or biggest inventions were made by people who were "realistic". I am sure everyone of you have already had done something in your life that was considered unrealistic by others, so why not this too? I am not okay with my Sandra being "stable", I want her to be cured - our MOs here always roll eyes when I tell them this. I am not saying we will achieve this but at least we will never stop trying and give everything we have/can.

    Your Saulius :)

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

    Saulius 👌🏻

    I asked my trial doctor if I could get SBRT or y-90 to the stable mets but she of course said no because they are the RECIST tumors. I am glad fr stable disease, but I want a cure too.

    Dee

  • meja
    meja Member Posts: 85

    Saulius, - thank you for a very inspirational sum up.

  • simone60
    simone60 Member Posts: 952

    Olma, interesting article, thanks for posting that.

    It has been an interesting discussion about oligo. I remembered Curious posting she had rads after a slight progression after 2 1/2 years on I\F (I think) which gave her more time on I\F. My current MO told me she would do the same so I think more MOs are open to treating slight progression s that way.

  • BevJen
    BevJen Member Posts: 2,341

    Very interesting discussion. Saulius, as always, you are right on point in bringing out attention to that publication.

    So I am at a crossroads on local treatment. I've had 3 microwave liver ablations, so geared at local treatment. However, when I went through my latest bout with cancer (detailed elsewhere on other threads) I actually had an explosion of mets in my bones, not my liver. So, emerging from that, my MO believes we should work with systemic treatments to see if we can calm the cancer down. After that, she is not opposed to trying local liver treatments again. I tend to agree with her at this point in time because the bone mets explosion has resulted in me having to have surgery on both my right and left hips, and we didn't even see it coming. Her other reason for not pursuing local liver treatment at this time is because the last two microwave took a lot out of me and left me in not great shape, and since I've just had surgeries from bone mets, she doesn't want me to be put in that situation again.

    So I think the local treatment versus systemic treatment has to take into account not just the oligo aspect, but the particular health of the individual at any given point in time.

  • nicolerod
    nicolerod Member Posts: 2,877

    so when i was first diagnosed Stage 4...they did not see and know that I had mets to sacrum they ONLY saw 3 tumors in liver..they said I was oligo...then a few weeks later when I insisted for different scan MRI for lower back..they found the sacrum mets and said I was no longer "oglio"....The was the head of the BC center at Columbia Univ. in NY....

  • cure-ious
    cure-ious Member Posts: 2,897

    BevJen, Your MO is right on, you have been through enough lately, more than enough!!! What systemic treatment are you on or considering? Time for some immunotherapy-cytokine approach to break through for us. And they could move way faster on getting us multiple options for treating Her2-low, the drugs are all there and we all know they work with not bad SEs- the basic science moves so much faster than the clinical...


  • nicolerod
    nicolerod Member Posts: 2,877

    Cure-ious...with regards to your post:

    "Nicole, I was just reading that ER-positive, PR-negative cancers are more likely than the ER/PR-positive cancers to mutate to express higher levels of HER2 protein and/or increased HER2 kinase activity leading to progression on endocrine therapy. These HER2-low cancers can then be treated with endocrine therapy plus neratinib or Enhertu, etc."

    What if the persons FISH showed literally 0% HER2low HER2+ cells....Mine back in 2019 showed literally 0%.... you still think the HER2 low drugs would work?

  • simone60
    simone60 Member Posts: 952

    Wow BevJen. You've been through a lot lately. I hope systemic treatment takes care of those mets.

  • olma61
    olma61 Member Posts: 1,026

    Nicole - from what I understand, HER2-low is a HER +1 or +2 on the IHC and then a negative on the FISH test. Did they do the IHC on your sample before doing FISH? Zero on IHC would NOT be HER2-low

    Here is a quote from that report I posted -

    “...positive outcomes being reached for formerly known HER2-negative BC that yet express HER2 to some degree (HER2 immunohistochemistry 1+ or 2+, but FISH negative) and are currently being classified as HER2-low BC for the purpose of trial enrollment.“

    Hopefully Cure-ious will weigh in and confirm if I've got that right

  • nicolerod
    nicolerod Member Posts: 2,877

    olma...here is what it says...

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