How are people with liver mets doing?
Comments
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letmywifelive-your detailed description of your wife Ranjiita's deteriorating conditions greatly saddened me today. I hope you and your daughter find strength at this most difficult time. Sending lots of hugs, kind thoughts and prayers your way.
I share your frustrations regarding the lack of real progress in our war against cancer and the need for effective therapies that don't mame and bankrupt our families along the way.
Current cancer therapies are a perfect example of 'The Emperors New Clothes.' We are not supposed to notice how these drugs are outright dangerous and useless. From the lack of early detection, to unreliable blood tests and carcinogenic medications, to the pseudo breakthroughs that resolve nothing. Our cancer therapies defy common sense and logic, and when they work, doctors don't know why nor can they replicate it....so here we all are, slowly or quickly dying, and we better be grateful, hopeful and behave.
After all...what choice do we have?
I don't remember who once said: This too shall pass!...hopefully I will be because a cure or more effective medications are finally discovered...
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LetMWL - this news saddens me, everyone. You have been a part of this group of travelers and helped us so much with experience, strength, hope and knowledge. You and your family and your dear wife are in my thoughts.
Z - I know what you mean about not being sure when you realize the options you thought you had are not really there. The same when I went to GCC and they told me the SIRT, no. TACE, no. Y90, no. Then I learned chemo, no, that news from the next place. And now to travel for treatment is out of the question. Let alone travel nearby for a dinner out or a shopping trip. The walls are closing in. What helps me right now is the dominate liver lesion is smaller reported on my US. And JFL talking about her liver regeneration.
Saturday morning I woke up and had blood in my urine twice. Then it cleared. I have to drink more fluids, yes. But was alarming. What could be the cause? A urine specimen and CBC was taken yesterday to check for infection and I assume cancer cells can be determined by that too. Also I had been taking Aleve which can have a rare side effect of blood in urine, mostly for men over 60 and only 3% of over 42,000 reports. But I do rare really well. So stopped taking that, also for my liver's sake.
I am thinking the organic sourced morphine for pain is the best bet though I prefer not to go there so soon. Or is it really so soon?
Kaayborg - how are you?
Diane
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Letmywifelive- The news regarding Ranjita’s progression breaks my heart .. I hope God grants her the patience, strength and wisdom to get through all this .. you, your daughter and Ranjita will be in my prayers during this very difficult time...Rest assured that even if she’s hardly responsive, she can still feel your love and support .. that alone will get her through a lot! I think I speak for a lot of women out there when I say a spouse’s support and endearing love is something we all hope for and fear losing when things get real and cancer’s ugly face shows itself. I’m so proud of you for being there for her and I’m sure she is too .. way to set an exemplary role model for your daughter as well! May you all find health, happiness and peace!
Z - I’m here to cheer you on as you have always done for the countless women on thèse boards .. with your strength, motivation and un quivering knowledge, you will find the best treatment that fits well with your needs .. your are in my thoughts and prayers too <
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letmywifelive- thank you for sharing. You, your wife Ranjitia and daughter are in my thoughts.
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Lmwl, my heart breaks for Ranjita, for you and for your beautiful daughter. It's so hard when the answer to our most fervent prayers is "NO".... I hope for peace and healing for your family and for pain free days for Ranjita.
Z, I can't believe how fast this disease breaks people. Of all of us here, if there was one to outsmart and out-research cancer, it was going to be you. I'm still praying it will be, that the options that are so stubbornly hidden make themselves seen and that you get to beat down those liver mets and that you get to be our voice of wisdom for many years to come.
Tears and hugs and caring thoughts.
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I am so sorry that you have reached this point. I wish Ranjita a peaceful passing (in the end it is all we can pray for). I am sorry your daughter will not have her Mother as she grows up, but she will see how much her Father fought for her Mothers life and how much you loved her too. At this moment I would love to hug you both. My thoughts are with you x
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I don't post a lot but I do read. LMWL I'm so sorry to hear about your wife Ranjita. Your posts have been very informative and helpful to us all here and it's clear what an incredible support you have been to your wife. This hideous disease makes me so sad.
Z, I can hear the sadness in your post. Hormone treatment did not work for my bone mets so I had to do abraxane early on. Is it time for a chemo to hit it hard? That was interesting about your father's chemo experience, low dose doxil on a weekly format? I have nowhere near the knowledge you have. I have had abraxane which worked very well for 8 cycles (excellent quality of living on it too). In UK we seem to only do 6 or 8 cycles and stop. It is a drug that can be revisited as it did not fail. Ibrance/faslodex worked for 11months until diffuse liver mets showed. After a failed liver biopsy, waiting for a 2nd one. 6 weeks off treatment. I will finally start xoleda (capecitibine) on Friday. I have to pick myself up after a few shitty weeks and hope this helps.
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LMWL - please stay with us a little longer, we do so love your wise and kind thoughts and Ranjita and your daughter. I am in tears. Worried Artist may be failing too.
Z- please call me for help with Taxoterrible or A-train. I was at the hospital getting fluids yesterday and feel much better.
(()) Claire
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It's been too long since I've posted any updates and I seem to barely be able to keep up with reading. Life doesn't quit... it's been a busy couple of months and I can't say I'm a picture of health. Truly I should just avoid pictures altogether. I certainly look the part of a dying cancer patient now. Forget the cute youthful pic you see with each post. I'm bald, browless, lash less, ungodly thin. Crepey dry skin covering bones and a belly swelled to at least the final month or two of the 3rd trimester with no expectant joy. Add to that a black eye. This is how I came out of the MRI which definitely diagnosed mets to my spine, focused on three vertebrae with possibility of diffuse mets in marrow. Also vertebrae have collapsed on to the spinal cord a bit but liver mets are stable and all things considered, I do feel pretty well...look awful. I see my onc on Tuesday then hubby and I fly off to St. Thomas. At my lowest point I thought it very possible I don't make it to the summer and I just had to see the sunshine and feel the warm air before I go, not to mention needed some sweet rest and time away with my love. Things improved shortly after booking the trip. Nevertheless, I have no regrets and can't wait to see those beautiful blue skies and waters.
Seems we may do some radiation to spine and keep with cisplatin and gemzar as long as we can. Not sure I have much hope for a trial. My counts just take too long to recover to their standard. So it's just a few chemos left.
Bluebird, I appreciate you asking about me. All of you mean the world to me. Praying for good news for all of us. So much changing and happening too fast. Hate it.
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All of you are in my prayers. Let my wife live, I am without words for you with this profoundly sad news.
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I’m so sad to read of all those who are having issues now. I’m worried about Artist. It’s been way too long since we’ve heard from her. Just a tough time now. Hugs to all
Babs
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LMWL, I continue in my unceasing prayers for Ranjita, you and your precious daughter. I am praying for a peaceful, comfortable transition for Ranjita.
My Princess’s transition was that way and it made all the difference in the world for my two boys and myself.
Ladies (and men), I mean it when I say that I am always praying for my BCO Sisters and Brothers, and all of your caregivers and especially your doctors.
I wish I could do more.
Lovingkindness to you all,
Louis
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Hello,
I am the sister of a stage 4 triple negative metastatic cancer, originally IDC of breast ER+/PR+/HER+ diagnosed in 2012, completed ACT, was in remission until April 2017 with diffuse liver mets , BRACA2+,with poorly differentiated cells, pathology more towards adenoma carcinoma of unknown origin. My sister has had a horrible year, starting with a very poor prognosis, they have looked everywhere for a primary as the markers look towards GI with one towards Breast, but unable to find a primary. Initially we were told that she was not a candidate for Y90 but after 11 treatments of Taxol and Carboplatin every 3 weeks, and the last several months every 5-6 weeks inpatient due to adverse reaction to Carboplatin and low platelets.This past January we decided to try and pursue Y90 again. Finally after all the chemo and growing toxicity of chemo, they did refer her case to IR to evaluate for possible Y90, one said she was not a candidate but the other said he would do this. She had rough time after the Y90 (only had one lobe done)but 6 weeks out they are calling her partial remission. I have been reading these threads for just about a year and feel like I know so many of you, celebrate your good news and pray with you all during these difficult times. I never intended to post,but this site has had some difficult news in the past few months. I accompany my sister to all her appointments. I have learned so much and am filled with gratitude for all the sharing and help you all offer. I felt compelled today to share our good news because I feel like some positive news is needed right now. My sister is still very weak with platelets around 30,000. but to hear that most of her liver tumors are gone was such a complete glorious news to hear.
I am so happy that you are going on a trip Kaayborg, we are in the Cleveland area and being treated at UH (Dr. Paula Silverman, we love), we went on a sister trip in February ( I have four sisters, we lost our older sister to Breast Cancer 22 years ago) to California for some much needed sun and warmth. It was wonderful.
I am sending positive thoughts, and prayers to all of you. It is so hard not to get discouraged but I really feel that there continue to be options and would encourage all to seek out additional opinions. Much love and prayers to you all
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Hello,
It seems like I am joining during a tough time for many with liver mets. My prayers goes out to those who who are moving through their final journey on this earth. I hope the fond memories you have with loved ones help you during this difficult time.
I found my liver mets 4 years ago. At my doc appt today, my tumor markers are continuing to go up and ct scan showed growth in one of the many tumors in my liver. So, we are trying to figure out our next new drug.
What is everybody's motivational and positive phrase to keep your chin up with a smile on the face? I need some happy energy.... to not get discouraged.
Thetese
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LMWL, thank you so much for letting us witness a little of your life with Ranjita and your devoted love for her. It is an honor. You have been so kind and encouraging to all of us here, too. Thank you for this as well. So many of us are praying for the two of you and your daughter. May you be lifted over the sharp stones and may God hold you in the palm of His hand now and forever.
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Irishsisterlove - thanks for posting about tour sister. Some of the women (And men) here are considering Y90 including JLF. That's is great news about her response. I hope she now continues to get stronger. Keep us updated, I know this area is of great interest to us here.
Celebrate Life - welcome. If you go into My profile at top right of screen you will find options to enter Diagnosis and treatments. They will prompt you and you can enter a tough timeline. I see you are 10 years with Mbc so I'm sure we could learn a lot from you too. I'm only staring liver met treatment but other members here with plenty of advice I'm sure.
Kaayborg - sorry to hear you had have an incredible rough time of it. I'm glad things have been improving and you have a lovely trip to look forward too. A holiday like that is always a wonderful tonic I find.
Meant to say Miaomix I agree with you about current treatments. It's so frustrating. I had a long chat with my oncologist last night at his clinic. He is very experienced and answers all my questions indepth. I did want to get a gene mutation test from a very new UK company. He wasn't sure what help it would be. He got on the phone with their ceo during the week and asked for proofs and clinical trials about the added value they provide. They couldnt provide him with answers. He doesnt want me out of pocket for information that he can give me. He thinks as a last resort when we are down to very few options that he would only at that point use if for clinical trial info. I trust he is using treatments that and I know once he has proof of something of benefit he will make a case for it. I'm following the members on Y90 as he initially said I would not qualify. He was worried about liver damage/failure if used throughout. Again we may slower in UK but he will look the newer evidence.
My thoughts are prayers are with everyone struggling today.
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LMWL,
Prayers and so much love going to your little family right now. Thanks for sharing with us and know we will be here for you whenever you need us.
Alissa
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irishsisterlove. Thanks for sharing your sister's story, and yours since you there every minute for your sister. It sounds like she has had a really tough time. I am very happy to hear her good news about her y90. I'm a member of that club, too! I'm a year out from mine with excellent results, no uptake on PET.
kayborg. I think there are no words to explain how sad it is to read all that you are going through. I hope the rads help with the pain and Cisplatin will reduce some those tumors without horrible SE. 💞
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Let my wife live,
I'm pissed reading ur story. And everyone else for that matter. I'm sad. I'm mad. I have two small kids and I'm scared. I wish we had the best of treatments out their for us. Z, I was following u on the Jbrance thread. I had travelled far with a diff treatment lately. What happened with that
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Thanks for thinking of me and the advice and perspective. When I am dealing with my own transition and progress, my thinking is not as clear for sure.
My onc and I are discussing some kind of Taxol IV ... low dose weekly for 12 weeks. There are three ways to go. Taxotere (docetaxel), Taxol (Paclitaxel) and Abraxane (Nab-paclitaxel). In theory, Abraxane should have lower side effects but given the low dose I am going to take, I am not super worried about side effects. Efficacy is my concern. My doctor is leaning towards taxotere if we go the IV chemo route but I am not sure that the data support it.
There is a 2012 study comparing Abraxane and Taxotere directly (Phase II Trial of Nab-Paclitaxel Compared With Docetaxel as First-Line Chemotherapy in Patients With Metastatic Breast Cancer: Final Analysis of Overall Survival). In that trial, Abraxane was more effective, although the dosing is not what I will receive.
Treatment with nab-paclitaxel 150 mg/m2 qw 3/4 resulted in a median overall survival (OS) of 33.8 months compared with 22.2, 27.7, and 26.6 months for nab-paclitaxel 100 mg/m2 qw 3/4, nab-paclitaxel 300 mg/m2 q3w, and docetaxel, respectively (overall P = .047).
Hope Rugo recently reported the results of a long long-term follow-up of CALGB 40502/NCCTG N063H (Alliance). This was a randomized phase III trial of weekly paclitaxel (P) compared to weekly nanoparticle albumin bound nab-Paclitaxel (NP) or ixabepilone (Ix) +/- bevacizumab as first-line therapy for locally recurrent or metastatic breast cancer (MBC). Just looking at ERPR+ MBC, the data found that paclitaxel did better than nab paclitaxel (abraxane) in ERPR+ MBC:
- Overall survival paclitaxel vs nab paclitaxel; 33 months vs 26
- PFS paclitaxel vs nab paclitaxel: 12.2 months vs 9.6 months.
Of course the dosing is completely different than what I am considering, but I am not seeing much support for taxoter vs the alternatives. I am curious about what people are being told about the difference between these 3 drugs.
Miaomix - They pitch these treatment advances in order to raise money and increase the value of the IP not on whether and how fast it translates into real options for us. Emperor's new clothes indeed. I appreciate your perspective.
>Z<
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Z - I was not offered anything but taxotere, and didn't know enough at the time to even ask. I had a second opinion at the Mayo clinic and was told that taxotere would be their drug of choice as well, so I went with it.
In my case, it worked extremely well. I had 100/mg every three weeks, and I had a complete response (NEAD) after 3 treatments. I am still NEAD (but it has only been since July of 2017). It obliterated the 8 or 9 breast tumors that I had, all activity in lymph nodes disappeared and the 8 large tumors in my liver were no longer metabolic. In addition, I had "innumerable" bone mets that are no longer metabolic. So, it kicked the sh*t out of them. I also found it quite doable. The big "D" was my only complaint, and that was managed with immodium.
My MO offered to let me quit the Taxotere after three treatments, but I opted go for 8 courses. He reduced my dosage and the D went away and my hair started growing back. I was tired, but able to walk 3 miles a day, full time job and keep up with two teenagers. My understanding is they are a lot better with the pre-meds for Taxotere now, so it is much better tolerated than it was even a few years ago. Also, I am Her2+++, so that may be why I was only
offered Taxotere, I don't know.
I'm sure you will pick the right treatment FOR YOU!!! If I would have known then what I know now, maybe I would have insisted on Abraxane.
Oh how I wish this were easier, and there was a magic bullet that worked for us all.....Sigh....
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To Z -
As someone mentioned before on this thread, you have been and always will be a beacon of hope to all. I know how you feel tired and frustrated now. Such is the nature of the disease. It breaks down a human being slowly, a little bit at a time. However, you are trying novel treatments while you are clinically healthy. Have patience, it may benefit you in coming days.
To Miaomix -
Thanks for the phrase "pseudo breakthrough". Except the development of Herceptin and other HER2+ drugs, I think most other drugs for BC has been more or less pseudo breakthrough so far. Remember, Tamoxifen came out many decades ago, and is still the recommended first line of hormonal therapy. It works for some, does not work for others, and when it does not, no one has the slightest clue why it failed. Same story with all the new CDK4/6 inhibitor. It's anybody's guess, who will benefit from it and for how long. I do not have much against the oncologists since I believe they are heavily controlled by big pharma and insurance companies. It is really frustrating that so little effort is being made on researching fundamental nature of the disease called metastatic breast cancer.
To Kaayborg -
Sorry to hear that you are not in great spirits. Years of chemo is hard to tolerate. But at least you have a plan.
To Louis -
Thank you for being a friend and being with me at this time.
To NouzayO -
Thanks for your kind words and for support.
To everyone else who expressed their sympathies and prayed for Ranjta - Thank you. I am always there for you.
To All -
It is often said that the word cancer fills one with terror. Surprisingly I did not feel a lot of terror for the last five years. However, I felt a profound sense of humility. I realized that it did not matter if I was a CEO of a corporation or King of a country, it did not matter if I was rich or poor, young or old. Cancer reduces a proud human being to an insignificant helpless individual in an instant. An individual waiting for his / her own demise or that of their loved ones. It destroys a family in an instant.
The fight will go on much after Ranjita passes. The fight for cure must go on. It is not an impossible goal.
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Z- I see there is a trial in NYC that combines paclitaxel with Keytruda, At this point I would be much more concerned with you getting onto treatment ASAP than worrying and waiting for some distant trial, but if there is any way to get a little immunotherapy into the mix?- for example, suppose you do some doses of paclitaxel and it works great, then can you go off somewhere and get some atezo?
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back to Tykerb and Xeloda I go. This was the first combination of drugs I was put on in Dec 2012 when I was first diagnosed with mets. I will also undergo gamma knife on the 17 lesions they saw on my last brain MRI in about 2 weeks. I feel like I am in a time machine and am starting all over again. Hopeful this will work again for me but scared it won’t.
Glad that Y90 is out there as I am not sure this treatment will take care of my liver mets. Feeling good about their ability to help with the brain mets.
Definitely nobroadmap for stage 4 BC.
Take care everyone
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LMWL, u r so well spoken. So true in ur words. I otoh am not so eloquent. I wish u and urdaughter peace and strength.
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Altho I have a mental block to understanding immunotherapy, Z may comprehend this?:
estrogen plays a fundamental role in the regulation of immune cell function by binding the estrogen receptor alpha expressed on T-regs to enhance the immunosuppressive function of these cells, and also to stimulate TGF-beta production, which acts to further suppress immunity: "Clinical approaches must generate and maintain type I immunity while simultaneously controlling these immunosuppressive elements."
alternate immune checkpoints for HR-postive tumors that trigger T-cell activation should be explored, including BTK inhibitors, such as ibrutinib that inhibit inducible T-cell kinase, which is required for Th2 activation.
"I have a lot of hope for the use of immunotherapy in breast cancer, but as more of a platform for generating the Th1 immune response and an immunogenic tumor environment.0 -
May you be lifted over the sharp stones and may God hold you in the palm of His hand now and forever.
I really appreciated reading those words this evening. What a beautiful bunch of people you are.
Louis, that you continue to stand with us really touches my heart. And LMWL, you do capture it so well. How cancer has reduced me is one of the hardest things to take. Sometimes I don't feel like me at all anymore, even though I completely know I still am.
Leftfoot, praying all the best knocking out those brain mets, and to Z, so smart and well-researched and caring, may you choose best and get back on course to stable disease.
Last day of school before spring break. Feeling fine about that.
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kaayborg -->
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Wow-everyone here seems so knowledgeable about so many issues. The courage and love for each other is awesome. I wish I had found this group sooner.
Talking about immunotherapy, my research doc is planning on removing some of my white blood cells, finding the ones that attack the bc, growing those to multiply, and then putting them back into my blood stream. He feels that bc is all individualized and this is one way to treat it. It will be a clinical trial of course, and that is currently work in progress.
Any thoughts?
I am looking forward to getting to know everyone more.
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Z, all in all, the taxanes are an effective class of drugs and there is not necessarily cross-resistance among them. Here is what I know, as I have tried all three and know way too much about these three drugs. At the end of the day, you can't go wrong with any of them. You are making a good decision.
- Taxol is from the Pacific Yew tree and sometimes faces shortages based on scarcity. The infusion is long. In trials, Taxol fared slightly better on a weekly regime versus every 3 weeks. Some people have allergic reactions to the binding agent, Cremaphor. For a small 1-2% (including me), this leads to severe, immediate anaphylaxis. I made it a few minutes, maybe less, into my first infusion and had to abort ship permanently.
- Taxotere is a synthetic version of Taxol, much more potent, much more toxic. The infusion is shorter and less medicine is required given its potency. In trials, Taxotere fared slightly better on an every 3-week regime versus weekly; and was found to be slightly more effective than Taxol. The binding agent for Taxotere is Polysorbate-80 which doesn't typically give people allergic reactions. I took Taxotere when I was early stage on a dose dense regime (every 3-week dose administered every 2 weeks) which is not approved for Taxotere due to unacceptable toxicity levels and I would not recommend it to anyone. In hindsight, it was a bad idea although I was very enthusiastic about the aggressive approach at the time. I lost all of my hair completely and it took some time for it to fully grow in in various areas on my head. Some areas were thinner for years (crown of head, especially on one side). When I was pregnant and diagnosed with mets, I did one dose of weekly Taxotere until I could have the baby and start on hormone therapy. I had zero symptoms and did not lose a strand of hair.
- Abraxane is Taxol bound in Albumin rather than Cremaphor in a nano particle formulation. Given that Albumin is a naturally occurring protein the body, the side effects from the binding agent are drastically deduced. The infusion is super short (30 minutes) and no premeds are required although some people receive premeds. In trials, there were some mixed results about whether Abraxane fared better on an every 3-week dose versus weekly (with a week off every 2 or 3 weeks). One large study showed a slight benefit to weekly administration while another smaller study showed the opposite. In trials I saw, Abraxane was slightly more effective than Taxol. (I don't know about Abraxane v. Taxotere.) I took this on an every three week dose with cold caps and kept some of my hair, enough to go without a wig for 6 months. After the 6-month mark, I started wearing a wig but believe it was more a function of the fact that (1) Dignicap changed its cap tightening system for the worse in my case, which made my hair suddenly fall out and (2) my Dignicap never fit right as I had to use one WAY, WAY too big in circumference to fully cover my hairline.
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