How are people with liver mets doing?
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OMGOSH MOTH!!!! WHOOOO HOOOOOO!!!!!! ***Happy Dance***.
GOSH I WANT TO HEAR THOSE WORDS TOO!!!!!
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SeeQ- Glad you liked you new MO. Sorry about the TM jump. Hoping it is nothing.
MOTH- Fantastic news! I hope to get that report one day.
BTW- I just saw my new MO and I REALLY LIKE HIM. he was all over the research I presented!! Told me to pursue the CDK 2/4/6 trial and that he thinks since the y-90 is shrinking my liver tumor, I should look into the similar treatment for my Neuroendocrine features. 🙌🏻
But he found a lump in my neck. 😳. He is hoping it is nothing. I have a special dotatate PET scan next week for the Neuroendocrine. If the lump does not light up he may get a neck CT to see what it is.
I had bleeding gums for the first time last night and this morning It freaked me out Thinking my platelets were too low (they weren’t) the new MO assured me it happens on my drugs sometimes and to stay on my prophylactic blood thinners for the port. (has a blood clot in my first port)
Going to Sarah Cannon next Wednesday. It is a little scary to be considering a phase 1 trial. But I Have more chemos in my bucket and the Neuroendocrine meds may be approved off label.
Dee
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SeeQ- Glad you liked you new MO. Sorry about the TM jump. Hoping it is nothing.
MOTH- Fantastic news! I hope to get that report one day.
BTW- I just saw my new MO and I REALLY LIKE HIM. he was all over the research I presented!! Told me to pursue the CDK 2/4/6 trial and that he thinks since the y-90 is shrinking my liver tumor, I should look into the similar treatment for my Neuroendocrine features. 🙌🏻
But he found a lump in my neck. 😳. He is hoping it is nothing. I have a special dotatate PET scan next week for the Neuroendocrine. If the lump does not light up he may get a neck CT to see what it is.
I had bleeding gums for the first time last night and this morning It freaked me out Thinking my platelets were too low (they weren’t) the new MO assured me it happens on my drugs sometimes and to stay on my prophylactic blood thinners for the port. (has a blood clot in my first port)
Going to Sarah Cannon next Wednesday. It is a little scary to be considering a phase 1 trial. But I Have more chemos in my bucket and the Neuroendocrine meds may be approved off label.
Dee
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Dee good luck at Sarah Cannon and I am soooo happy you love your new MO I know I love mine and its just great to feel that way!!!
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Moth -- congrats.
I also got good news today from my MRI skull protocol -- the RO called me shortly after I got home -- nothing showed up in my C1 or the space to the right of it (as was suggested on my MRI of my skeleton a few weeks ago). Hope this good news streak continues for all.
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BevJen, yes!!! Lets keep the good news coming!!! Love to hear it.
Dee- sounds so great and so promising. Thrilled you like your new MO. Makes such a huge difference! Good luck at Sarah Cannon.
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AWESOME news moth and BevJen! Answered prayers no doubt! 🎉🎉. I would be so grateful to follow in your steps.
My mind is already compartmentalizing the different things I need to visit with my MO if we see progression and how much. I’ve read so many different ways to address progression. It’s very hard for me to look at the scans and see the results without losing it....THANK YOU for all the prayers and positive thoughts....I will take them all right with me into the appointment Tomorrow ❤️ I’m praying for cancer regression or stability to be revealed on ALL the scans/test this month in our group.0 -
Anewbreath,
keep those prayers coming! Sometimes I think that my prayers have hit a roadblock or something, but appreciate prayers from others.
Make a list of things to talk with your MO about -- it may quiet your mind somewhat. I find that when I go into my appointments with my MO on kind of a more transactional level, I can keep it together a lot better during our meetings. And putting things down on paper, at least for me, lets them move from the front of my mind onto the paper.
Hope that your appointment goes well tomorrow.
Bev
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Moth and Bev, I'm very glad to hear you got good scan results!
Dee, you are amazing. Very happy you have a great new MO. Rooting for you to find the best treatment.
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BevJen – Great news on the skull MRI! I hope that Friday's liver MRI will also be excellent news. I will ask my IR about following my liver mets with liver MRI. Right now, I have CTs and brain MRIs every 6 weeks as part of the DESTINY04 trial, so maybe they don't want to add another scan.
NicoleRod – I'm so glad that your liver MRIs are showing that the cryoablation worked! I hope that you find an equally effective systemic treatment soon!
Moth – Congrats on the excellent CT scan results!!!
Grannax – I'm thrilled that Faslodex has been working for you! You have been a pioneer on the Y90 front! I so appreciate you sharing your experiences.
SeeQ – Welcome. I'm glad that you like your new oncologist and hope that the tumor marker rise is "tumor flair" from dying cancer.
Dee – I had breast cancer spread to lymph nodes in my neck when I was diagnosed Stage 4. I had surgical removal and proton radiation therapy to the area. They have not come back. It's great that the Y90 continues to shrink your liver tumors. I hope that the CDK 2/4/6 trial turns out to be a good option. Sarah Canon has an excellent reputation.
Best wishes to everyone getting scans! I have scans this week too.
Theresa
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pausing in the midst of beginning online learning gir my 4 kids and and teaching. Thinking of everyone and hoping for great scans.
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Dear Bev, Moth, news re fantastic! I felt it... now waiting for more good news from others!:) Saulius
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bevjen. I hadn't thought of it like that. Maybe they will be normal abnormalities, that's what I used to call anything odd that came up. Or the issues will be non issues in October. Yes, a continuation of low CA15-3 would indicate stable disease and I'm sure it would calm me.
Dee I'm just amazed that you got into that trial! Where is this place you're going? Obviously, I haven't read up on trials at all. And a new MO that listens and respects you. Hallelujah
LFF Hi! Hang in there. Good job teaching, WOW.
Hi, Shetland.😍
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grannax- I’m not actually in the trial Yet but it looks like I can be accepted. I have to see the doctor on Wednesday first, then start the process of singing papers, flushing out my meds will take only two weeks, then scans and a liver biopsy and a punch skin biopsy in the butt. I will keep a diary. The hardest part to me is the fasting. 2 hours before the pill and one hour after, twice a day, 12 hours apart. That means I have to get up at 5:30 am to take the morning pill so I can eat supper with my hubby at 6:30 pm.They said I will most likely have nausea.
Sarah Cannon Tennessee Oncology is in Nashville. 2 hour drive away. I will have weekly appointments for about 10 weeks. Then monthly. Scans and biopsy again at 8 weeks. Some appointments are 12 hours long because they draw blood regularly over that time. I never knew how much was required for a trial.
Thanks Theresa for sharing your experience. I will remember that if there is anything to the neck lump. If so, I may have to have it treated before I go on the trial. Evidently the spots are competitive. So it is all in the air right now. Trusting my Lord for the next step in this process. 🙏🏻
So glad for the good reports here. Hoping for more!
Dee
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Prayer definitely carried me through my scan review today with the PA. Much appreciated support. My rise in TM was a sure indication of progression unfortunately. Scan results showed a new 2cm liver lesion. All other sites were stable or reduced by I/F. Since the lesion is very close to one of my healing original Liver lesions, My MO suggested using a piece of my OG biopsy (from - 1/18.). For PIc3 testing. Does that sound right? What if I didn’t have it back than and do now? Has anyone heard of this? I thought this was a liquid test?
If I don’t have the PIc3 mutation he would be recommending flasodex Alone or Affintor and Exemestane. I don’t understand why he doesn’t think A CDK’swould work anymore at this point.
I asked about targeted radiation treatments options and the PA said that the MO thinks this is the best option for now and that I can discuss those options with him when emy PIc3 results come in. 7-10 days.
Grateful to have been on my treatment plan for 28 months, sad to move on to something new and feeling disappointed and defeated by progression even though it could be worse😞
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Anewbreath- Sorry to hear of your progression.
I cannot answer your questions, I would have those questions too. Hope more chime in with advise. Hugs.0 -
Anewbreath, I’m sorry to hear your news of progression. I hope you and your team come up with a good plan to knock back any new mets. 28 months On I/L sounds like a lot, but I’d be like you and want more also. Sending a virtual hug.
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Anewbreath,
I am so sorry to hear of your progression.
I would not want them to base any treatment from a biopsy that was that old -- if I am reading your dates correctly. Was that in 2018? Tons could have happened by now. You could have a new liver biopsy (tissue) or a liquid biopsy, but I wouldn't rely on old tissue because it seems like something has mutated. And sticking with only the PIK3 test forecloses other potential treatment options.
Also someone recently posted an article about using Verzenio as a mono therapy after progression on other CDK 4/6 inhibitors. PM me if you didn't see it and I'll send you the link -- I saved the article.
Also, as to local treatment -- most MOs don't like or don't understand those. I had a 2 cm liver lesion that I had removed by microwave ablation in July 2019. Was not a bad procedure, it was pretty quick, and recovery was fairly easy. You can stay on faslodex while you go through that procedure and recovery.
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Anewbreath - you had a good run on I/L and I can imagine your disappointment. I wish for you it could have been much longer. I am on Verzenio at 16 months and worry about not making it much further (ew pesky and persistent pains).My MO doesn't do TMs so I just worry scan to scan.
Since you have a new liver lesion and the others are not progressing, I would want to know what's going on with this new liver lesion. I would push for a biopsy of this new one. Would like to hear from others....
Sending you a big hug and many prayers.
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Anewbreath, sorry to hear about the progression. I think I'd want a fresh biopsy just in case something new pops up. Some people's cancers seem to really change over time.
I hope you soon get a clear picture and roadmap for your treatment in the future0 -
anewbreath
I am sorry about your progression. You got a good ride out if I/L. I wonder why they are not suggesting local therapy if only 1 tumor grew and all others were stable/reduced. It seams a good option to really knock that stubborn tumor down. I would ask for an IR consult just so you have all your options covered.
Not sure about using the original tumor. Others may know more.
Prayers for wisdom!
Dee
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Anewbreath- Study of Verzenio alone as monotherapy after I/F indicated that about 1/3 of patients retain full sensitivity to this CDK4,6 inhibitor for at least a year, another third responded but progressed at six months, and the other third were resistant from the start. These are for patients who did show an initial response to I/F (ie, excluded people who never responded to I/F), so if you did respond a year or more to the I/F there is every reason to hope the CDK4,6 part can continue to work for you.
We also have some indications from others on this site that one can go off of a CDK4,6 inhibitor and potentially regain sensitivity a few months later (backing up a published report that CDK4,6 inhibiton is reversible pre-clinically), so altho we don't have any hard numbers about that issue, these drugs are so powerful that it seems short-sighted to assume that they won't work, no?!
ie, why wouldn't Verzenio-Faslodex be an OK option?
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Anewbreath- Study of Verzenio alone as monotherapy after I/F indicated that about 1/3 of patients retain full sensitivity to this CDK4,6 inhibitor for at least a year, another third responded but progressed at six months, and the other third were resistant from the start. These are for patients who did show an initial response to I/F (ie, excluded people who never responded to I/F), so if you did respond a year or more to the I/F there is every reason to hope the CDK4,6 part can continue to work for you.
We also have some indications from others on this site that one can go off of a CDK4,6 inhibitor and potentially regain sensitivity a few months later (backing up a published report that CDK4,6 inhibiton is reversible pre-clinically), so altho we don't have any hard numbers about that issue, these drugs are so powerful that it seems short-sighted to assume that they won't work, no?!
ie, why wouldn't Verzenio-Faslodex be an OK option?
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Anewbreath...so sorry for your progression...I certainly know how that feels... I do envy you though for even having something work... and to have it work for that long is such a blessing. I am sure you will have success on the next treatment!
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Thank you all for understanding, something that’s hard to come by in my metastatic life. It’s been a difficult day..,,I feel like I'm in a twilight zone.
The PA discussed the Pi3k test with my biopsy from 1/2018 and it took me by surprise, than that we wouldn’t revisit a CDK and I don’t think I heard much after that. I just wasn’t prepared and even if I had been it probably won’t matter with progression news. I’m planning on asking to have a blood biopsy when I visit with my MO after test results come back. I’m wondering if they don’t do them at my small somewhat rural CC. Really, I wish I could have went over this result with my MO....
Bev/Jen - I would love that article on Verenizo. I will share with my MO. Also, is microwave ablation the same as SBRT? Do you need to have a IR for local radiation? We do have a Radiation oncology department but, I’m not sure if that’s just RO doctors?
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Anewbreath - I totally agree with you. There are some excellent PAs but test results, potential diagnostic procedures, and treatment options should all be discussed thoroughly with your MO. I recommend you follow up very quickly with your MO to get all your questions answered. This is a sensitive time for you and news that will take some time for you to absorb. This is about YOU and that is your MO's job to provide clarity and options.If you aren't happy, maybe a second opinion is warranted?
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I need a good backgrounder in when to use tumor testing and when to use blood tests because I'm confused. Maybe it's explained in another thread somewhere?
Anewbreath : I read this when looking at articles on mutations and testing "Patients who are negative by the therascreen test using the liquid biopsy should undergo tumor biopsy for PIK3CA mutation testing." So a negative blood test isn't a negative until it's confirmed my tumor biopsy testing? I think that's what it's saying.. https://www.fda.gov/news-events/press-announcements/fda-approves-first-pi3k-inhibitor-breast-cancer
My clincial trial apparently did foundation 1 testing on me when I enrolled but they do not share the result with me. Is foundation 1 only liquid biopsies? The trial will retest my tumor and give me the results if I leave the trial due to progression ..but I don't know if I should also plan for a separate private pay liquid biopsy as well..0 -
Anewbreath,
How far away are you from an NCI/NCCN cancer center? It may be worth your while to get a second opinion. Some docs will even consult via Telehealth visits right now. I got a consulting opinion from Dr. Massimo Cristofanilli at Northwestern - his nurse/scheduler arranged to get my medical records before our visit so he could see what was going on, and I also formulated some questions for him upon which to focus when we "met." To inquire about a consultation with him via a Telehealth visit, you can contact him through Northwestern University Hospital in Chicago.
The article about Verzenio as a single therapy (which someone else posted -- maybe Cure-ious?) can be found at https://www.biorxiv.org/content/10.1101/857839v1.f...
Look at note 10 especially for using Verzenio as a mono therapy.
Microwave ablation is NOT the same as SBRT. SBRT is a series of targeted radiation treatments, done by a radiation oncologist. I'm not sure if they would use it on a 2 cm liver lesion, but that would be easy to check out. Ask to talk to a radiation oncologist where you are seen and see what they say. Microwave ablation, Y90, and other local liver treatments are done by interventional radiologists -- they are a different type of doctor.
A good article to find out about what interventional radiologists can do for liver metastases can be found here:
https://pubs.rsna.org/doi/full/10.1148/radiol.1211...
A good overview of liver metastases and treatments for them that's pretty easy to understand can be found at Memorial Sloan Kettering website at:
https://www.mskcc.org/cancer-care/types/liver-meta...
Hope some of this is helpful to you. Good luck.
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BevJen- great info. Thanks for sharing
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hi all,
Checking back in since I haven’t been here since November 2019. I’m heartened to hear of good scans and sending prayers for those that have shown progression.
The good news is that my sister had about 6 months of minimal treatment. Not NEAD but her liver was basically resolved of lesions and her spots on lung and bone were minimal as well. The less good news is that cancer markers were up and her scan last week showed major progression to bone, 25 lesions in lung (largest is 4cm) and 2 3mm spots in her brain that will be rechecked in 4 weeks because no one knows what they are for sure. And another small met to the liver seems to have appeared.
She started on adriamycin yesterday and and will be getting Xgeva as well. The upside of an aggressive cancer seems to be that it should respond to this chemo. Doctor is most concerned about liver and possible brain but feels like the bone and lung can be beaten back...doctor also said since my sister has had every kind of cancer from triple negative to triple positive to ER-, they aren’t going to waste time with a biopsy and go just go for the chemo. And so now we are in another sprint!
I like my sister’s MO but she was crying when she called my sister last week about her scan. This sent us all into terror mode but she explained this week that even though she is not supposed to get attached to her patients, she really loves my sister and was upset about how rough this upcoming period would be. That’s good...I guess? Wish I could see her but she’s in CA and I’m in nyc and I can’t risk her health.
Im going to check out the appropriate threads but I wanted to tell you all that I think of you, pray for you, and celebrate your lives every day.0
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