How are people with liver mets doing?
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One rad done. Nine to go. It was easy but we'll see Bab
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So good to hear from you mom. Continuing to pray for Dani 's strength and am so sorry she has to wade through all of this. Just one immunotherapy...pembro with eribulin. Scans are done...now the wait.
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Z, thank you for the info on immuno. Kaayborg, I'm glad you got sprung from the hospital! Hoping to hear of good scan results for you. Kaylynne, loved the photos. Very cool that nobody is too old for Harry Potter World. Our family would like to go there some time, too. Lalady, nice ocean and sky photo! Babs, so far so good then. Rooting for you! Hello and welcome, Jeenee. Hugs to everyone here on the thread!
Good to hear Dani got through the Y90 and is able to continue with rad treatment. Dani strikes me as a person who, like you Momall, will do anything for her kids. Sending love.
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Kay Lynne
I have been on carbo/gem for 3 cycles. Have done well on it. Side effects: constipation, back muscle pain/tenderness and some fatigue. So far so good. It is bringing my TMs down so thinking it is working well. MRI is Nov 10th so should really find out what it is doing.
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Robin so glad you got a kick out of the video, good. How is the Olaparib being chosen among the other immunos? I'm just curious how are these decisions done? You seem to be very comfortable with your team, that's gr8.
Lalady are you feeing stronger? Thanks so much for such a gorgeous view, I have such a backdrop for my phone.
Liwi so glad about the video – I enjoyed it too.
Artist yes, MO also last year started the convo, hmm you had the hard talk with her (my DD), im like don't even go there…on the first visit, when she had 2 liver mets, maybe it's important the talk, but she could have first gotten to know us etc.. and then…whatever, it turns out THIS doc let her wait over 2 weeks to know what the next tx will be, so yeah.
Kaay thanks for the answer
Shetland you are good for my ego, Lulubee as Shetland commented, we all wanna be a phoenix. Good for you.
JFL thanks for the site.
LindaE how are you managing? Kaption, Grannax2,Babyruth,Animalcrackers oh my gosh i'm for sure leaving s/o out, so sorry but i know you deeply care so do I. You all are in mind all the time. Literally
Bluebird what is water with high alkaline? Do you a name or brand name I could look into.
Lynne you wrote so beautiful in response to Wendy, you should be a writer.
No news - Dani is feeling better aka not vomiting, so another rads day as planned. That's a good day, I'm learning the new normal, happy when rads are being done on time,
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Does anyone know anything about Sarah Cannon Research Institute in Denver? They are conducting a trial that I'm interested in. I am posting the link so if any triple negative's know about this trial please fill me in. I follow another group on FB and one of the members is partcipating in this trial and has great success. https://clinicaltrials.gov/ct2/show/study/NCT02981...
Kaayborg, I hope you have as much fun as I did in NYC. It's so exciting that you will see all the Christmas decorations and ice skating rink. Take lots of pictures.
Momallthetime, I am trying to find a trial and I have also heard great things about immunotherapy. Keeping my fingers crossed. I am reading your posts and all the responses. You are one helluva mom! Dani is lucky to have you.
hartrish, thanks for letting me know about carbo/gem. I'd rather get on a trial but knowing that you and kaayborg have both had success with it makes me feel better.
artistatheart, My girls are my everything. I divorced their dad in 1996 and we've always been so close. I can't stand the thought of not being around until I am old, really old.
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Momall,
Oliparib is not an immuno, but a PARP inhibitor. It has been very effective with triple negative and BRCA related cancers. Although I am not BRCA or triple neg, I have a genetic mutation...BARD1..that is closely related to BRCA1. If you are BRCA or have one of the genetic mutations closely related such as..BARD1, CHEK2, PTEN, PALB2, ATM, BRIP1, RAD50, MRE11..then you qualify for a clinical trial with a PARP. There are plenty of these trials for triple negative as well. There is a clinical trial at Stanford called Talazoparib Beyond BRCA (TBB) Trial. Also if you are BRCA or have one of the mutations, and had a response to a platinum agent, then they believe you will do well on a PARP. I had complete response on Carbo, but had to stop due to myelosuppression. The Carbo was kicking some "c" butt and was also killing my bone marrow. But I felt so good while on Carbo and hardly any side effects, but I was doing weekly Carbo X3 with one week off. MY MO says side effects are less on a weekly regime.
I will start my clinical trial at Sarah Cannon in Nashville on Monday and they are pairing the Oliparib with a study drug from Astra Zeneca AZD1775 a Wee1 inhibitor. I am hoping it works as good as Carbo with less bone marrow suppression.
My plan is to stay on the clinical trial as long as possible, then move on to Y90.
I know how rough it must be for Dani doing Y90 and then rads. I had Proton Therapy to my chest back in 2015 and by the end of it, I could not even walk up a flight of stairs without almost passing out. I admire Dani's strength and courage.
Robin
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Kaylynne, I also did Carbo and Gemzar but only lasted one round with the Gemzar added to the Carbo. I only weigh 108 and my MO thought it was too much for me to handle. So we dropped the Gemzar and did Carbo alone. I had a complete response to Carbo, but after 3 months, I had to stop bc it was too hard on my bone marrow. MY blood counts would drop and I would have to wait a few weeks until they rebounded. There were not rebounding fast enough to get consistent treatment. My MO was afraid it was doing too much damage to my bone marrow, so we stopped it for now. I am moving on to a clinical trial at Sarah Cannon in Nashville.
One thing for you to consider....If Carbo works for you, then a PARP inhibitor should work for you as well.
Good luck with your treatments!!
Robin
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Yay Mom! She got through both and no vomiting today is huge!I am praying so hard that Dani finally gets big break soon and can forget about all of this for even awhile to spend time with the kids. And you too!
Robin, How do you keep up on all the mutations you might have, the treatments that may help, the trials. I feel like I am barely getting through just regular stuff and feel exhausted. You must spend a LOT of time on research like Z???? I am humbled.
kaylynne, I also have 2 daughters in their 20's and my oldest is a son 28. That is the hardest part for me too although leaving my husband to fend for himself alone also breaks my heart....I always imagined I would be similar to my Mom an Grandma and be a round into my late 70's.......I keep trying to remain hopeful but some days are just ....... sad
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Hi Kaylynne, I have never heard of Sarah Cannon in Denver. University of Colorado is also running the trial. I have heard good things about Dr. Borges at CU. One advantage is if you have to travel back and forth to OK by plane CU Med Center is very close to the airport.
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Robin - I bow at the waist in respect for your incredible research. Grab that cancer by the BARD mutation and tell it who's in charge.
>Z<
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Artist, I have been doing my own research since being diagnosed stage iv. I unfortunately put all my faith and trust into my early stage bc oncologist, and he failed me miserably! That is when I learned to be my own advocate!! I got interested in the PARP treatment based on my Foundation One report. I don't have very many mutations to target, and the Bard1 was one of the mutations being studied. So the PARP has always been on my radar, I was just waiting for the right time. I like to always have a plan B & C to ease some of the worry and stress when a treatment stops working. My MO knows that she can just make suggestions to me, but she works for me and I make the final call. She is dead set against Y90, but doesn't say why. And at the moment, Y90 is plan B after the Parp. Researching can get exhausting but I don't work and only have a fur child so I do have plenty of spare time!
Z, My research pales in comparison to yours!!! And yes that BARD1 mutation has no idea what's about to hit it!!!!!
Robin
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Soar lovely Robin - very proud of you. Wishing you the BEST in kicking some cancer butt on Monday. Seems Oliparib is a powerful PARP inhibitor. I wish my Foundation 360 had come up with some mutations to follow, but it's vanilla MBC for me. I had my PET yesterday, get results and meet with onc next Tuesday, then back in the big chair on Wednesday for another ride on the A-train. I went to work today feeling better as this cough/flu is finally going away. Momatt - thinking of you and Dani - you both deserve only good things. Z- when do you add a med?
(()) Claire
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Thanks Robin, I am pulling out all of my file and charging up. You, Z, Heidihill, babs, Shetland and many more always impress me with your handle on understanding all this stuff.
lalady, My Onc put me off of treatment again this week as my TM's went up (after treatment ironically when they went down on my weeks off, something to consider) Plus he wants the neuropathy to clear up. Tomorrow is my scan. If it's good we continue on the big A, if it's bad news we move on to Xeloda......
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HI Claire, Praying for awesome PET results!!!
Robin
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Artistatheart - for your feedback!
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momallthetime -
I actually brought up the ESSR mutation because I am starting a clinical trial that does not include any hormonal manipulation. I was taken off my last clinical trial which involved exemestane (aromatase inhibitor). It began to fail, most likely because of the mutation. Re: faslodex, I was thinking out loud - wondering if I had my hormonal bases covered.
Pembro is an immunotherapy that i would hopefully receive in addition to the eribulin, as part of the trial and don't know of any difference/benefit relative the ESSR. Side affects sound rough but I want to hit this with everything.
I experienced progression towards the end of the last trial and over the past few months, this next step looks like the best hope. I start next week. Will let you know if I'm selected for the Pembro and how it goes.
Wishing Dani all the best with her rads. NOT easy. Peace and prayers.
-JeeNee
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momall - thanks so much for your update. You and Dani are my heroes! I can't believe you take time to enquire about me with so much going on at your end. I'm ok, new chemo is sort of kind in terms of SEs other than the very occasional nausea/vomiting. Seeing MO next week and we'll see how TMs are behaving. Lots of love to you and Dani!
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Last Friday I had my second dose of the weekly taxol. After the first dose I had some quite alarming tingling especially in my lymphedema arm - but not much in feet. I asked the nurse about it, and she told me to watch it. It might be that I cannot have the taxol because it could be an early sign of neuropathy.
I cannot have cold packs/gloves/socks. I asked at the hospital - they don't do it. They say there is no evidence that this is helping in any way and therefore the hospital will not invest in these things. This makes me doubt too. I have searched to and fro to buy myself - but have given up. They are so difficult to get hold of and the shipping time is so long. Besides I'll not be able to keep them cold until I reach the hospital. It's a long drive and the hospital cannot provide refreezing of the stuff.
I did not have many SE after the second dose - but today on the 5th day I had tremendous tingling in my feet. It's been all day and very very alarming. When I stood up after working on my computer, I couldn't feel my feet. When I tried to walk it was like I was floating on air - no feeling in my feet at all. I tried to walk but was so afraid of tipping over. Now a couple of hours later it has diminished a bit, but I'm really scarred.
Did anyone on taxol experience this? After how many doses? Did it go away after stopping taxol? Should I say stop already now - the nurse (and before the doctor) have said that I'm the one to say stop? I'm so afraid it might already be time to move on.0 -
Hi Lisbet,
I would think that they may be able to lower the dose. I was on a higher dose regime (every three weeks). My MO indicated we could go to weekly if I developed issues with neuropathy - I would say this is definitely what you are experiencing and would let the hospital know right away. Fortunately, I did not experience neuropathy but the Taxol failed - we moved on after three rounds.
If they can't lower the dose then perhaps you should switch. Is Xeloda an option? It's an oral chemo so might fit better with your lifestyle (if I recall you had concerns about travelling to the hospital).
Pat
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Lisbet, that was my thought, too, to ask about lowering the dose as Sadiesservant suggests. Even if the hospital is not providing cold gloves and socks, what's to stop you from holding a couple cold drinks for a while? At least don't wear socks or put your hands and feet under a blanket during the infusion. I have no study on hand to back this up, but (anecdotally) I first noticed tingling the day I accepted the warm blanket the nurses offered at my fifth infusion. Could have been a coincidence, but keeping hands and feet relatively cool is an easy thing to do and can't hurt. Do talk with the doctors about your best chance of using this med without getting permanent damage. Maybe they will change your dose and/or schedule, or have you take capecitabine (Xeloda) instead.
Artist, I hear you. I don't want cancer research to fill my precious time, and yet I do think being educated and advocating for ourselves is important. Two ideas: If you have a Foundation One report, ask them for the service where they email you suggested trials. And is there anybody in your life whose investigative inclinations would make them a good assistant researcher for you? Would they take on the job of looking up stuff, printing and marking possibly relevant info to bring to your onc?
Case study: My recent liquid biopsy showed a Her2 mutation (different from Her2 positive). On the report it showed a suggested drug for it, neratinib. My onc said the mutation was not an activating one, so neratinib would not apply. And it is true that this mutation is not on the usual list of suspects. So I called the company and asked why the report listed a drug for it if this was the case, and they said they believed it could be a driver based on their research. I told my onc this, so she looked into it. She said the company called her; maybe my call prompted it. End result, my onc changed her mind and neratinib is on our list for future treatment. (Currently having success with Xeloda.)
Hoping for a scan that shows improvement for you, Artist. Is your onc stepping up and paying attention now?
Robin, you rock. Rockin' Robin.
Lalady, you deserve a big high five for going to work under the influence of both a cold and chemo. Oh wait, a high five might cause tingling. Big hug instead.
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Thanks Shetland, the service is a good idea. I am pulling all of my files out today and getting organized. Wow, way to advocate for yourself on that mutation. That is the stuff I need to catch up on. My Onc still sends in PA and NP who question and write everything down, go fill him in and come back. This time I had several questions I sent them back to "bother" him with. My next appt Monday is with him as I get results from my scan and we decide what we are doing.
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Shetland - That a was five star proactivity on the neratinib. Nice work.
Just met with my onc today. It no longer surprises me that every meeting she says things that are flat out wrong. I am careful to only challenge things that effect an outcome I care about. I still like talking with her and we got a lot done today... we got to a very complex diagnostic and treatment plan in place and I couldn't be more pleased. Plan A, subject to a boatload of diagnostic tests, is to drop hormone therapy altogether and go with Abemaciclib as a monotherapy. We'll monitor TM's and if we see increase in TM's we'll add faslodex. If not, we'll ride abemaciclib for a while.
Onc believes that the FDA did not approve abemaciclib as a monotherapy. She believes she has to prescribe it with faslodex to get insurance approval ... so what she does is prescribe the two drugs and but then put a hold hold the administration of faslodex shots. In fact the FDA has approved abemaciclib as a monotherapy if you have had both chemo and hormone therapy. I have had both, but I did not argue since I got what I wanted .. abemaciclib as a monotherapy.
My PET scan shows improvement. Since it is so soon after the treatment the effect is can be fully explained by the chemo I had. The conservative view would be to assume chemo is responsible for the progress so far and that is what my onc believes. Teasing out the effect of immunotherapy could be hard, even with time.
Chatting with the radiologist yesterday about my scan he said I have 20-50 hypo-attenuating lesions in my liver that are not hypermetabolic... I've never seen a report or a scan (and I look at them) with more than 5 lesions so I nearly fell off my chair. The radiologist says that he can find hypo-attenuating lesions making up 30-40% of my liver tissue going back as far as my April scan of this year possibly earlier. The April scan report neglected to mention that I had 30+ lesions. The April scan report said my liver was completely clear. Since I started Ibrance with 6 lesions in January 2016, that would mean I progressed a long time ago but more than one radiologist missed it.
My onc and I are not sure we believe today's radiologist. We considered a second opinion but decided to go for a liver MRI. The MRI will pick up lesions in the liver whether they are hyper-metabolic or not. The logic is that, if he is right, then PET/CT scans without contrast do not work to monitor my cancer because the SUV of the active lesions is not exceeding background. This is not impossible since the liver is fairly hot. The MRI will either prove they guy is wrong or provide a baseline for future MRI scans.
Another liver biopsy scheduled for later this month. I will also have a biopsy of my sternum, which has remained hot through hormonal, chemo and immunotherapy treatments. It's either some demon cancer from hell that needs to be nuked or it isn't cancer. Arthritis is a possibility. I don't want radiation to my sternum that I do not need.
Full dance card for the rest of the month.
>Z<
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Z- interesting and disturbing about the scan discrepancies. Curious why don't you want to take faslodex with the Abemaciclib? I hope that your MRI is good news. Will this MRI be with contrast?
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Z, you really can't compare the results from a Pet/CT to a MRI. Both modalities are very different. To know rather there is progression you should be consistent with 1 modality. It's also very important to have contrast with both modalities. MRI of the liver will always be more sensitive than a CT. Wishing and praying the best for you.
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Z, Abemaciclib is a great choice, I like that it will also protect you from brain mets. And how unique that you will start it alone, so it will be clear whatever side effects are due to this drug, and how long they last, supposedly any GI problems clear up in the first few cycles. Good luck!!!
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Nkb - I want a lighter touch will make sense for the moment. I can do faslodex on its own or abemaciclib on its own. I am tired of hormone suppression, there is some evidence CDK 4/6 inhibitors can activate an immune response, and F1 showed a genetic mutation that suggested that the cancer might be responsive to CDK 4/6 inhibitors. That suggests abemaciclib monotherapy.
Based on the experience of the few people I have found who took the drug, the diarrhea is tough. I also have some concerns that it is more immune suppressive than I had recalled. Better than ibrance but 92.3% of patients still experienced low WBC. Still researching.
Kandy - If I can't see major changes in liver mets on a PETCT scan until 9-12+ months after they occur, then PET/CT is not working for me as a diagnostic tool and I have to change. That said, we are not sure the radiologist is right, so it's either an MRI or a second opinion to find out. The MRI is going to be more definitive. Interested in everyone's experience with MRI's. I think they will do it with and without contrast, but that is a string I have to pull. Not familiar with the difference or why you would do both. If anyone can explain the nuances I am all ears. MRI is new territory for me.
>Z<
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Cure-ious - My onc is not super creative but seems to like the idea of starting on abemaciclib and then adding faslodex if abemaciclib alone does not control things. Pretty cool to have a targeted therapy that can be a monotherapy or combined with hormone suppression. Interesting options for sequencing. I just hope it is not god awful to be on. I am off all drugs while we sort this out and it is amazing. Energy sleep mood attention is all there. I could get used to this.
>Z<
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Nib, with Abemaciclib, the FDA approved dose without hormone therapy is higher,so it is not a matter of simply adding the one drug. I would like to hear about any research of those two options head to head. In the MONARCH trial, the patient make-up of the two test arns were very different - with the Abemaciclib only arm being more heavily pretreated - which makes comparison difficult.
Z, the hyoodense lesion finding is very disturbing. How does this happen?! I hope this is a case of an overzealous IR who is seeing things that aren't there. I had some seemingly latent findings in my recent PETS. My bone mets started off in dire shape at diagnosis - to the point where I was diagnosed with Stage 4 initially due to the discovery of uncontrollable hypercalcemia and I could barely walk. For over 2.5 years, ever since I began treatment, my bone mets have been NEAD. My PET 6 months ago mentioned the continued presence of a stable wedge fracture in my L4 vertebrae. Odd, I was never aware of any fractures in my back. I run with no back pain, carry around a very heavy shoulder bag all day and carry my heavy toddler around and believe I would have noticed a spinal fracture. To add another layer, my PET 3 months ago mentioned the continued presence of two stable wedge fractures in my L1 and L4. I would not be surprised if I had fractures when I was diagnosed but why are they first being mentioned years later?
Shetland, I am glad your MO is now on board with Neratinib. I have been reading a lot about its potential success with HER- patients who have HER mutations. It sounds very promising, particularly when combined with certain PIK inhibitors, like temsirolimus. I follow this area with a close eye as I have been trying (so far unsuccessfully) to get myself qualified for various HER treatments due to my HER equivocal status on IHC.
LA, keeping fingers crossed for very, very good PET results!! I ended up postponing mine for a few weeks. I now get it Sat 11/18.
Mom, glad Dani's Y90 went smoothly. She is a trooper with all she is dealing g with now. I read an article about 1 documented case of the “abscopal effect" with Y90. A man with some type of liver lesions had Y90 in one lobe and the other lobe subsequently cleared up of cancer in its own.
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JFL- thanks for pointing that out, i see 150 mg BID with a hormonal vs 200 BID for monotherapy. I am so interested and excited about this drug. Will look up the Monarch trial.
I have wondered a lot about how bones are repairing after scan resolution and when they become strong again vs susceptibility to fracture. Do you think these wedge fractures were there at the beginning and obscured by the cancer or you have had silent fractures after NEAD?
Mom/Dani- thinking of you.
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