How are people with liver mets doing?
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Cure-ious, love the information, especially since I was on keytruda, technically still on trial for now....sorry to hear about Babs, will keep her and family in my prayers.
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Joyner you can see my shoes in this one
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ok gals, I’ve had a really bad weekend with fever, chills, pain and hiccups! Yep hiccups for days!! I’ve read that they can come from liver mets? Have any of you ever experienced them and any suggestions? Thank you
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Momallthetime, good to hear from you. We miss you around here. Thanks for letting us know about Babs. Very sad to hear and I pray for a miracle. Babs, you are a tough cookie and have been inspiring to so many here with the way you just keep on living your fabulous life through all of this over the past few years.
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I'm praying for Babs too. I really miss her. If I remember correctly her y90 failed so she's dealing with liver not functioning well. I know she was in the hospital but I don't really know what's happening now.💞
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yes, prayers for Babs and her family. Such a strong woman. I have not posted in a very long time.
My condition has gotten worse, especially the past two months. I stopped all treatment near middle of August. September first I collapsed in my kitchen. Ambulance, hospital for ten days. The first four or five days I was often incoherent. The liver was not filtering the brain. Anyway, back home with hospice support. They have been great.
Not much pain, bloating mainly and much fatigue and weakness. Somewhat unstable on my feet, but that has improved. Just happy to be home.
I’m not sure what the near future holds. Hanging onto friends and family.
I gain strength from all of you.
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Kaption, I'm so sorry to hear this news, but glad that Hospice is helping. Keeping you in my prayers! You are one of the first people I met when I came back into the site and your advice was good, and your kindness was well appreciated. I'm going to be hoping that you continue to do better and get a good long time with the help of hospice.
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Oh, Kaption, I'm so sorry things are rough. I am glad hospice is helping you, though. I had that incoherence thing in spades back when I had my liver failures and it is so frustrating and disorienting. Try to rest, dear friend. Please keep in touch. We surely miss you.
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Mom! So glad to see you post. I'm always thinking of you and wondering how you are. Please check in with us when you can. I hope Dani's girls are doing okay; I know you must be focused on doing whatever you can for them and keeping them under your wings.
I am so sad about Babs. I'm glad you are keeping touch with her, for all of us. If you can, please tell her we miss her and we are holding her up in thoughts and prayers.
Lulubee
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Kaption Good to hear from you. I didn't realize all that could happen when the liver stops filtering. I'm glad you have a good hospice. Prayers 💞
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love you Kaption. Glad you are home and hospice is taking care of you.
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Thank you all. These boards are such wonderful information and support. Amazing women.
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Kaption - You’re in my thoughts. You have helped and encouraged so many of us. Rest well, friend. Glad you are home
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Hi Kaption, It's wonderful to 'see' you again!! I am also very sorry to hear you are off treatments- I guess you have probably been on many that aren't necessarily listed in your footer. Am going to hunt for something new for you to consider!! Stay strong...
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And I'm shocked you don't have much pain- how is that possible?
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Kaption, I have been thinking about you and was worried as I noticed you hadn't been around the boards lately. It is great to hear from you. I am sorry to hear of the hospitalization and liver filtering issues. Sounds like you are in good hands with hospice care and wonderful you are focusing on family and friends. You will be in my prayers. Thanks for taking the time to update us on your condition.
Grannax, I believe that Babs' Y90 worked well on her liver but she had lung progression shortly after the Y90, followed by the discovery of extensive brain and bone mets. It is so hard to accept. It is just not right.
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Kaption, In case you want to consider more treatments, here is one I liked. They blast the cancer cells with a chemo and add immunotherapy to tee off on those cells and go hunt for others. there are other trials of this kind out there too- just have to do one visit per month for five months...
INT230-6 Injections & Immunotherapy for Treating Advanced Breast Cancer
A Phase 1/2 Safety Study of Intratumorally Administered INT230-6 in Adult Subjects With Advanced Refractory Cancers (NCT03058289)
Summary
To take part in this study, you must have advanced (some stage III) or metastatic (stage IV) breast cancer and have at least one tumor that can be felt by your doctor or seen on a scan by your radiologist. You also must have tried all other available treatments. INT230-6 is a combination chemotherapy treatment that is injected directly into the tumor. The first part of this study will determine the best dose of INT230-6. The second part will investigate how tumors respond to the best dose of INT230-6 when it is given with an anti-PD-1 immunotherapy. INT230-6 contains the chemotherapy drugs cisplatin (Platinol®) and vinblastine (Velban®) along with a substance that makes them more effective. This study is also recruiting patients with other types of advanced cancers.
Here is a More Detailed Description:
INT230-6 is comprised of a 3 agents in a fixed ratio - a cell permeation enhancer and two, potent anti-cancer payloads (cisplatin and vinblastine sulfate). The penetration enhancer facilitates dispersion of the two drugs throughout injected tumors and enables increased diffusion into cancer cells. (Nonclinical safety studies showed no findings following drug injection into healthy tissues.)
Historically physicians administer the two active drugs comprising INT230-6 by intravenous (IV) infusion to achieve a systemic blood level at the limit of tolerability. The objective is destroy both visible tumors and unseen circulating cancer cells (micro-metastases). Unfortunately, dosing drugs IV delivers only a small amount with a low concentration at the tumor site. This approach especially for late stage cancers is not highly effective and often quite toxic to the patient.
Attempts at direct intratumoral injection with chemotherapeutic agents have not shown the ability to treat the injected tumor, non-injected tumors or micro-metastases. This lack of efficacy for local administration is due possibly to poor dispersion and a lack of cell uptake of the agents.
Due to the use of the novel cell penetration enhancing agent INT230-6 treatment demonstrates strong efficacy in animals having large tumors. The Sponsor's in vivo, non-clinical data shows that INT230-6 thoroughly saturates and kills injected tumors. In addition, the drug induces an adaptive (T-cell mediated) immune response that attacks not only the injected tumor, but non-injected tumors and unseen micro-metastases. Cured animals become permanently immunized against the type of cancer that INT230-6 eliminates.
Clinical trial IT-01 will thus seek to determine the safety and potential efficacy of dosing INT230-6 directly into several different types of cancers. In addition animal studies showed a strong synergy of INT230-6 with immune modulation agents. Thus as part of study IT-01 the Sponsor will seek to understand the safety and efficacy of INT230-6 when administered in combination with immuno-therapeutic agents such as antibodies that target Programmed Cell Death (PD-1 or anti-PD-1) receptors.
This study seek to understand whether tumor regression can be achieved and patient outcomes improved.
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Kaption and Babs...Thinking of you and praying for comfortable pain free days.
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Thank you all. Yes, I have not listed all my treatments. I have also tried for and been rejected from three trials. One of the quirks of my status is I’m HER2 equivocal. So neither the positive nor negative path was very effective. Ny longest treatment was Ibrance. One year there. Everything else was six months or less. My MO did some checking before I stopped. Honestly I don’t have the energy to participate. Five years of mbc is exhausting.
Thank you, cureious, for checking. lots of promising future
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girls I need some help! This stinking liver of mine is being fussy and won't accept help from abraxane! Now that would be to easy, wouldn't it?
I did ibrance/letr then Xeloda then abraxane. My liver is pretty darn loaded. My doctor petty much said well you can go home live out your life and probably a better quality of life without any more chemo. I said Well I just don't feel that bad! He said you can choose to go out fighting or just let it be. It kind of made me mad. I really haven't been through nearly half some other woman have been. I've seen bloodwork way higher than mine and people still living.
So on Monday I'm trying the a/c combo. I don't find much out about it. Any tips or ideas on it or anywhere on here I'm mossing some threads about it? Did it help anyone?
I also sent an email for the trial at nih that cured adventures with cancer. It did say about three days before they respond back.
Thanks for any help, I'll need it!
Sara
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Have you tried carboplatin and gemzar? My liver was not responding to doxil or abraxane but it is with this chemo. Just a thought
Lis
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Sara,
The trial that cured Judy Perkins (adventureswithcancer) is amazing only she is so far the only MBC success story. They have become overwhelmed with interest since her story went public back in June. She is on Facebook and will speak freely with you about it. If you are accepted into the trial, you have to be completely off treatment for 30 or more days. After you go through the initial phase, it takes 4-6 months to grow your Tcells and during that time you will have to get on treatment while you wait. Before returning for the final phase of the trial you have to be off treatment again for 30 plus days. I’ve tried twice to get into the trial and was denied twice because I didn’t have a sizable operable tumor in a safe location. They will not take biopsy tissue they have to be able to remove at least a 1cm tumor. They are not looking for difficult operations. I’ve also noticed that candidates with heavy tumor load in the liver is often turned down.
Best of luck and keep us posted.
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Dear Kaption, It is heartbreaking to appreciate where you are at, but I agree as I won't hesitate to drop all the medical stuff like a hot rock once there is nothing more promising available. Nobody lives forever, and I had a neighbor decades ago, a young woman who developed gastric cancer during her second pregnancy (was scanned and diagnosed a week after childbirth), and she went through three surgeries just to get her organs functioning- after each one the surgeon said "no more treatment", and she went and found another doctor who would do it- she died three days after the final surgery, in incredible pain, screaming in pain between rounds of her self-administered morphine, because that is what happens if you fight cancer to the great extent that she did. Of course she was desperate to have any time with her newborn and young daughter, but it was all for naught and just a terrible way to go, the costs were also so high her husband had to sell the house and move in with relatives (and ironically, he died a year later in a car crash). I am such a wimp about pain, it won't take a whole lot of it to convince me when it's time to go. Which is why I am very happy, surprised and encouraged to hear you are not in debilitating pain!!! And able to kick back and enjoy the days, too? (well, I guess so long as you are out of the hospital). Please keep posting when you can, and thanks for all of your many contributions to all of us!!
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Skitsblitz. It may be too late or maybe you have already heard of a local treatment for liver mets. It's called SIR Spheres y 90. It's radioembolization. You'll need a consultation with an interventional radiologist if you want to explore this option.
I took FAC many years ago for my first BC. I didn't have mets back then so I don't know anything to tell you except it's strong.
It must be hard to make all these choices right now. Praying
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Skitzblitz, have you looked into Halaven or Ixempra? You didnt mention them, so I am just assuming you might have not tried them.
Keep us posted xxx
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Skitxblitz- hard to say when we don´t know what you have tried. What about Taxol? Xeloda is working on my liver with Navelbine I have had 3 rx. big change. Also the EC you can see this in my bio what I have tried. I have only been stage for 4 for 4 months, when diagnoised but think this has been in liver longer. had a 7.6 cm tumor now 3.4 and lots of the small ones have regressed. i think this happened a year before. That´s how I got to stage 4. I switched doctors had enough of mine old spounge bob square pants. no ability to think out side the box. Can´t say the Xeloda is feet friendly. blisters pain. but hell. i´ll do what needs to be done.
But you have been stage 4 for 5 years. that is a long time. I wish I wil be so lucky. from where I am today I am hoping to get my 2-3 years. But of course I want to be in to 22% that are cured of this nightmare. Don´t give up. do you have other mets? is it just the liver that hashad enough meds...maybe a short break on tamoxifen...then start again????
Good luck. I know this is exhausting and i´m just starting...uhhhh.
Hugs and hope to you
Raven
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Skitzbitz, sorry to hear about your convo with your MO. He might be throwing in the towel early. The question is whether he would give that same advice if it were his spouse . . . . Not likely. That is not his towel to throw but is yours. The A in AC is pretty harsh - could you try Doxil? It is the same drug as A but formulated in a liposomal delivery format to better target the cancer and cause less collateral damage on the healthy cells. No hair loss, no extreme fatigue and nausea like A. It only needs to be administered every 4 weeks because it continues to circulate in your body longer than other drugs. There is also Halaven and Navelbine which are more tolerable. There's is also Verzenio which works on people who have failed Ibrance and can be given with or without hormone therapy. The others have also given some good recommendations. Keep us posted. Thinking of you.
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Cure-ious, those trials you posted about look very interesting. Thank you for sharing
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Cure-ious, those trials you posted about look very interesting. Thank you for sharing! Very helpful.
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I'm so curious-- how do they KNOW that Judy Perkins is cured? By what criteria did the researchers differentiate "cured" as somehow different from NEAD? I just don't understand how they could say "we don't see any MBC here now" and equate that with cured. MBC hides and comes back. I thought we had established at least that much.
Can anyone explain?
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