How are people with liver mets doing?
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Livin wish I knew more...hated hearing this news from you and want so much to be there for you. I can offer you this much. I've recently been to the ER and then admitted for several days. So much going on in my liver they can't measure one tumor from the next but I am home now and feeling absolutely fine. My hope and prayer for you too. Pm if you need to. I'll check in frequently.
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Lvin, I hate what you are going through. I don't know what chemos you have had but you just need one that works - and just because Doxil doesn't work for you, that doesn't mean there isn't something else out there. Which taxanes (Taxol, Taxotere, Abraxane) have you had or have you had Xeloda? Halaven is another possibility or Gemzar. All of those pack a punch. I had a similar experience as Husand's wife with Xeloda. My entire left lobe of liver was nearly 100% mets and my right lobe was not doing much better. It shrunk everything very quickly and effectively and lasted 14+ months.
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Zarovka - I hope you have found your credit card and drugs. Try to breathe. You have done everything possible to prepare for this trip. Try your best to kick the anxiety emotion to the curb.
Mom - You are amazing. Praying for Dani. Hope things are stabalizing.
Kaayborg - Think of you often. Your symptoms remind me of what I went through about a year ago with ascites.
Always praying for all of you wonderful wise women.
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Wendy3 - I love Vitamin C infusions - I get them regularly (thanks to Z) now that I am on weekly Abraxane. Sending you good vibes that your numbers are good.
Lisbet54 - I'm currently on IV chemo (6 rounds) 3 more to go before scans; so I walk in your shoes and love animals too. Prednisolone is a steroid (this will give you some extra energy which you may need to help to fight the nastier effects of taxol), Tavegyle is an antihistamine, Zantac is a histamine 2 blocker which reduces stomach acid, you might need Zofran for anti nausea (I take that too). The bad boy is Taxol - that will cause you to lose your hair, but will kill fast growing cancer cells very well. If for any reason you become allergic to taxol/taxoterre (as I did) switch to Abraxane as it is tolerated better. Please get all the help you can driving to get your meds, even on a country road you may feel unwell.
Husband11 - thank you so much for reminding ladies in the big chair that Xeloda may be next and its a pill that can really kick some cancer butt. I am hoping to move to that or abemaciclib or whatever Z is doing soon.
Z - make sure you call your credit card in lost/stolen, most can be replaced very quickly even in Japan. Breathe deeply, you are doing so well, but this is a lot to take on and we want you back healthy not "Lost in Translation" - although a little bit of that Bill Murray whiskey may be in order. Thrilled your daughter could ring the bells in Kyoto. Please keep posting your journey. Unacceptable to lose your biopsy. Please alert your insurance company to help in this fight - after all they paid for a "lost" sample.
(()) Claire
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Livin - Let us know what the scan says but whatever the news you will get through this round.
Aggressive cancer is also very vulnerable cancer, easier to kill off than some of the slower moving stuff. I had my mets under control with hormonal treatment but it appears to have evolved around ibrance/letrozol into an ugly beast (very much unlike normal cells). Scans last month were positive for progression.
This is a good time for both of us to do chemo ... you and your doctor have many options. I just popped back two Japanese Xeloda. I'll be on low dose xeloda in preparation for immunotherapy in a couple of weeks. If this doesn't work, I'm inclined to do with some rounds of standard chemo. Seems to have worked for Wendy.
Are you going to get a biopsy? Let us know everything. Especially how you are feeling. It's terrifying, that I know.
>Z<
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Wendy-sending those good vibes now!
Babs
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Wendy- Good luck!!
Z-When you are about to freak out, remember that this part is just the "supplemental" therapy, and that you are getting treated faster than you would have at home, and with a much more powerful regimen. Have you met the main MO doing this procedure (no doubt)- what do you think of him? And what does he think about your prospects on this protocol? Will they scan, and when?
MomATT- I haven't followed what Dani is doing-did she not respond to the trial drug? It's been terrifying for a long time already for her!!! However, she has not yet had any immunotherapy...
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Lisbet having cancer is never convenient and adjusting to what this means is difficult. It's a hassle, never comes at the right time and is very life threatening. I really think that you have done everything right regarding diet, exercise and your cells still made a mistake. Go attack those sneaky cells that have no idea you found out they were there. Give them a big punch! Let the medication help you to get your immune system to fight these pesky cells. I could have driven myself back and forth. It would be nice for your to have support but if you have to go it alone you can...If you don't have treatment and your cancer spreads you won't be there for your animals. Treatment is inconvenient but it works. You can figure this out! Be kind to yourself it certainly is worth a try anyway
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Bstein, well said. I love the rainbow in your picture!
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Hugs to you z you brave warrior! During aphoresis are they not collecting your T cells? I must admit I'm not completely aware of the exact protocol for your therapy. Is there any sites of cancer that they can re biopsy? It is so silly why they can't trust the patient with their own samples! You would have made sure it was delivered to the right place. All you can do is breathe in, breathe out and repeat. May the universe work in our favour!
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Wendy-good luck with the scans!
Lisbet- I am glad you are getting more information and figuring out a plan to treat your progression.
Z- sounds amazing- are they augmenting your NK cells or your T cells or ? Is the Xeloda to keep things in check while they wait for the cells to multiply or is to to try to expose new antigens for the NK cells to recognize and attack? I hope that your liver biopsy ends up in the right hands and gets the desired tests done on it!
If you are around Kyoto again- there is an amazing museum outside of Kyoto called the MIHO museum. It was designed by I.M.Pei into a mountain. You take a city bus out there that takes about 1 hour. When you get off you can elect to walk up a hill and cross an amazing bridge to the museum as you round the corner it comes into view and is just magical. The design is based on Tao Yuan Ming's "Tale of the Peach Blossom" we took an early morning bus and when arrived there were only a handful of people- when we left after lunchtime it was packed. (There is a shuttle if you don't want to walk)
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Z you are totally amazing, being in a foreign country, navigating the health care system as well as adapting to life and language differences is not easy - not on top of everything else you are going through too. As a Brit living in Germany I still get stressed at times when something I am not used to happens - and I have been here 9 years! You have been just one week and seem to be coping incredibly, but you are bound to get upset at times and find the situation you are in stressful. Just try and enjoy the trip and experiences there too.
Lvin, how are you doing? Hoping we hear some good news from you, as others have said, lots of treatments out there that can still kick your cancer back.
Mom, thinking of Dani and you, as always sending positive thoughts your way.
Kaayborg so good to read you are feeling better.
Wendy loads of positive thoughts heading your way for todays results.
Lisbet - I can only repeat what others have said so well and I really would recommend the steroids too. I was the same as you before beginning treatment, eating healthily, no alcohol, no smoking, exercising daily. But the treatment is necessary and the steroids will help - they really helped me to get through the treatment, gave me energy (I was in Bavaria and the Austrian mountains walking whilst on this treatment, energy was so good!), just to say, your animals are obviously so important to you, the steroids will help give you the energy to keep working with them and the treatment more time to spend with them. Try not to stress too much on the wig, take your time and get it when you are ready - at least here in northern Europe it is getting cold enough now to go out in warm winter hats if you lose your hair.
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Wendy, I am sending good vibes your way.
Hugs, Lynne
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Lisbet: I know all of this can be overwhelming. When I get overwhelmed I try and break down each item into priorities so it is not so much at one time. Cancer is such a life changing event and we all are fighting for the best options. We are all here for you and each other.
Lvin: did you get your ct scan results? Maybe your doctor was talking about your liver function tests and just wanted to get another scan to compare to your previous scan. Some of my liver function tests are elevated and they are slowly coming down on carbo/gemzar. It seems I live to get my next liver function test and TMs. I am sending thoughts and prayers your way.
Z: hang in there. You know what your treatment plan is in Japan. I think you are doing amazingly to be in a different country and trying to navigate through everything. Maybe you can find out where they sent your biopsy and track it down so they can forward the biopsy to the right lab. How frustrating this is that healthcare facilities can send a biopsy to the wrong place.
Zaay: glad you are out of the hospital and feeling better. Hope your new treatment kicks the cancer back. Sending thoughts and prayers your way.
Tricia
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has anyone heard or doing the Cellect-Budwig diet protocol? Just came across it when looking at natural cancer treatments today. If so, please give me your thoughts, good or bad.
I am not one to stop chemotherapy and only do natural treatments, but I would do things to help my body and chemo fight the cancer better.
Thanks for any input. Trici
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Lisbet Fear is a huge part of MBC. I doubt there is anyone who has not experienced fear of the TX we are offered. Obviously, you are a very strong person. You live alone, take care of your animals and work. That's a lot. You take excellent care of yourself. Even with all that your body betrayed you. It sounds like you went beyond your fear and took Ibrance and you got used to it.
Do you have horses? If so, saddle up and go for a long ride. I used to have horses and riding is good therapy. It was my happy place. It was the most relaxing place on earth for me. I'm sure you have a happy place, go there. Give yourself a break from all these decisions. Deciding not to decide IS a decision, even if just for a day or two.
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Z, hang in there. You have got this. Hoping and praying things get smoother for you.
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I just have to say that all of you are amazing women and I feel fortunate to read about your challenges and victories. Y'all are a bunch of badass women. I'm pretty new to the mets to the liver diagnosis and with me being triple negative, the drugs most of y'all take I will never take. The info out there suggests my time with MTNBC will be shorter lived than MBC. Now the worrying begins...is the taxol working? TNBC is aggressive and difficult to treat. How many times have I read that? I've had 3 taxol treatments. This is my off week and today I have head and body aches, dizziness and a nose bleed, oh and lots of hot flashes. Has it traveled to my lungs..brain..bones? What are symptoms of that? Should I ignore it or contact my onc?
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Kaylynne don't forget you're part of this family and thus fully amazing and strong in your own unique ways. Call your doctor no matter how large or small if something is concerning you. That's my rule. I never want to regret having not informed them of something important.
That being said, those symptoms being signs of progression is quite a leap. Whenever I feel bad my mind often goes to the worst case scenario, like the whole fever episode...was this going to be how it ends? But here I am feeling well and waiting to find out if this works.
I know exactly what you mean about the worst prognosis language in literature. Can't tell you how many times I've read those words. But individually it means nothing. Keep hopeful friend and find the reassurance you need by reporting your symptoms.
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Kaylynne- It is true that TNMBC can be an aggressive type- on the other hand some very exciting immunotherapy combos are working for just that type. There has been a lot of progress recently. You could look on the immunotherapy threads to get more info- immunotherapy is a complicated topic-but, the more you read the more the same terminology gets used over and over and starts to make more sense.
Stats and generalizations scare me sometimes too, try to be your healthiest self-you are unique in your response to everything.
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Nkb and kaayborg,
Thank you for the encouraging words. I am eating healthier unprocessed food and very little red meat. I've increased my water and green tea intake and I try to walk 2-3 miles per day. I will definitely look into immunotherapy when/if taxol becomes ineffective. I've heard and read good things about it as well. I am feeling better this afternoon and was able to take a walk on my break. If the symptoms persist, I will contact my onc. tomorrow.
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Has anyone heard from LvinAZ since she posted from the ER? I am worried about her.
Lvin, if you are reading this, I hope that you are okay. Lifting you up in prayer.
Hugs from, Lynne
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Husband11, I had to smile at your comment: "They don't know whether a given therapy is going to kick cancer's butt, or yours."
Another great quote from Zarovka: "That makes me mad ... when this medical stuff becomes more complicated than it should and takes away more of my life." Yeah. How demoralizing to have to deal with more problems when you are already maxed out. Jet lag and culture shock are probably operating here, too. I would just cry. Ok, I do cry when the universe seems to be against me in numerous petty ways. You will get your balance back. I love the temple candles and gongs, and your daughter's participation. Feeling the love.
Lisbet, I agree with 50sgirl, that your healthy lifestyle will help your body deal with treatment. Maybe you can look at it as giving some strong help to an old friend, your body, to beat back that damaging cancer.
Benadryl may go by a different name in your country. It is an antihistamine whose generic name is diphenhydramine. Maybe they give a different antihistamine there-- the Tavegyle lalady mentions? They gave me Benadryl as a standard drug to stave off an allergic reaction. That is the drug that made me sleepy. My doctor offered to reduce it, but I was more afraid of a reaction than I was of the drug. It probably would have been fine. Maybe they would allow you to reduce yours after the first couple infusions.
Kaayborg, what happened? Why did you have a high fever? I'm so glad you are home and doing well.
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I am worrying these days. I asked my onc why I still have bloating and reflux when my TMs are back to normal. I also told her I worry about my ovaries for several reasons (ILC, germline Lynch gene mutation, liquid biopsy that showed a mutation that has been found in ovarian cancer). So she is sending my to see the gastro and gynecology people. I am afraid of tests -- like endoscopy, and transvaginal ultrasound with my post-meno tissues. I am afraid to find out that something more than the bc liver mets we know about is going on.
There, I said it.
I would like to turn in my Cancerland pass now and go home, please.
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Shetland- I hear you! I read somewhere that cancer puts you into "hypervigilance vs denial mode" I have thought about the idea of having ovaries out -although more surgery is not on my things to do list.
How do they check for a Lynch gene mutation?
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Kaylynne I did Taxol for six months and know of many friends here in Vancouver who are triple negative who have done amazingly well on it. I've finished six months and just got my ct scan results I'm good. All bone mets and healed over (and I had a ton) liver tumours are dead and my breast tumour is teeny tiny now and my onc says it may just be scar tissue. Whatever happens in the future I'm pretty happy right now. I had bad nosebleeds too the first three months or so. It goes away when is your first scan? You got this and you are part of this tribe and are a super warrior as well
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Wendy3-This is very exciting news! I love the happy scan stories-it is so encouraging.
Kaylynne- I had one night of nosebleeds/clots with each taxol- I think it only lasted one night-but, every treatment got them. I only did 12 weeks of taxol so am not sure if they would have gone away.
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Wendy - your post put a smile on my face! Congrats girl!
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Nkb, that is an insightful comment that cancer can put a person in "hypervigilance vs. denial" mode. I feel that now. I don't want to miss something that ought to be treated, but on the other hand I do not want unnecessary tests when my TM is good and I don't have obvious symptoms. And I don't know if my onc is concerned, or is simply addressing my concern and thinks tests will give me peace of mind. Maybe the reflux and bloating is just Xeloda!
The Lynch mutation showed up in my Foundation One tumor genomics test. That gene is not often a somatic mutation, i.e. just in the tumor, so the cancer genetics department ordered an Ambry panel that covers many more genes than just BRCA. It showed that the Lynch mutation is indeed germline, i.e. in all my cells and inherited. Lynch genes carry an increased risk of primary ovarian cancer, among others. And ILC can metastasize to the ovaries. So because of the bloating and the mutation found on the liquid biopsy, I am concerned. My doctors and I are in the no prophylactic surgery camp, for fear it would stimulate mets and lower my quality of life when the ovarian risk is not super-high (as it is with BRCA). But if something is found, that will be a new discussion.
Yay, Wendy! Very good to hear your report. Kaylynne, those symptoms could very well be from Taxol and/or pre-meds. Do report, but try not to worry too much. (Yeah, that coming from me who just typed that stuff above.)
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Wendy YEEEESSSS! Kick back and enjoy a long long period of boring scans.
Fighterm on Inspire started a thread for me to discuss this treatment, for anyone who wants to get technical. She is a microbiologist and far more knowledgeable. Also appropriately measured and skeptical in her perspective. I start discussing the details of the treatment on the 6th post. I'll continue to post technical details on that thread, where fighterm can correct and comment. It's a complicated topic. I don't think it will happen during the trip as I am mostly concerned at the moment with maintaining a good mental state. It's a challenge.
I met with Dr. Terunuma on Monday. He is wonderful and I am very grateful to be in his clinic, under his care. He did not ask what he thinks of my prognosis on this treatment. Statistics don't matter much to the individual. I don't care if 50% of patients respond, I only care if I respond.
That said I've already done my research and know that many people with breast cancer respond, but most need to come back periodically. This is a treatment that you can repeat. Mentally I am prepared to come back every 18-30 months if it is "working". I also know that, like all cancer treatments, it may not work on my cancer.
I did get a biopsy before I left, but its become a drama. My doctor ordered the Caris Molecular Intelligence test but for some reason the core was sent to Foundation One. Now Caris is asking for the core (in response to the doctor's order) and the assistant can't find any other cores ... The biopsy report says they took several cores, but my MO's assistant says there is only one.
I am getting several layers of BS and trying to sort out which layer is which. Any experience or information helpful. So glad my life doesn't depend on this nonsense. Oh. Wait. It does!
My understanding is that only the Caris report provides immunohistochemistry ... I have not seen a Foundation report that provides any information beyond genetic mutations .. Shetland, or anyone, do you get ERPR status and immunohistochemistry information on your reports? I am getting immunotherapy. Immunohistochemistry tells you what proteins are present (or attach to?) the surface of the cell. This can help drive the immunotherapy.
Is it possible that they can pull several core and only end up with one core?
If they sent the core to foundation one, can they get it back and then send it to Caris for immunohistochemistry testing?
I am worried that they sent the one and only existant core to Foundation One and Foundation One does not do ANY immunohistochemistry, so a result I won't even know if this new beast is ERPR+.
I will ask for a PET scan when I get back. My regular onc won't want to do it because of my recent scan, but I think it is needed to understand the effect of this treatment. Looking forward to that arm wrestling match ...
Thank for all your support. It's a challenge to travel for treatment, indeed. This was the first place I turned when I went into a melt down. Doing well this morning. Anyone considering something like what I am doing should keep in mind that you will be far far from home.
Replacement credit card is on its way by UPS. Spent yesterday chilling in Nikko without much activity except for a trip to the onsen and short foray for ramen noodles. An awesome breakfast buffet awaits .. they do breakfast buffets in the simplest hotels that you would not believe. I am off ..
>Z<
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