How are people with liver mets doing?
Comments
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Wow Z what a whirl wind. First off progression always sucks bad, but we regroup and continue. I'm so happy you had that luck today to run into a caring doctor, you're right they are few and far between but so important to our survival. I'm a big believer in signs and Japan seems to be a place you need to go to. Sometimes we are pushed towards something and we need to heed the signs. I get also told multiple lesions blah hate the word multiple be more specific. You have so much knowledge and that is power. Faslodex is easy I did it for nine months. The nicest part about faslodex is that it didn't make me want to kill my family lol. Other hormonal were awful and made me so angry . There is also always chemo I don't recall but I don't think you've jumped into that boat yet have you? I wish you the best results whatever you decide.
Doesn't a liver biopsy leave you with a lot of pain for a few days? You hosted a soccer dinner wow you are a rockstar😊
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that sounds great. Just diagnosed BC Her2 stage IV mets to liver
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Z I'm so glad the doc helped you get what needed to be done. It is such a gift when after so many docs ignore or say "we can't do that" you encounter someone who says "let's go for it". I'm anxious to hear your plan and am cheering you on.
Mary
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Z you are my example of tenacity. Love the way your brain works. Radiologists are very knowledgeable and want to be helpful but your friend went the extra mile for you. Going straight to the source to get things done is brilliant. Of course, the MOS don't like it at all.
They must not have put you out to do BX. They had to intubate me for mine because my sats were too low. Nope I would not have been able to host a dinner.
You go girl, fly to Japan and keep us posted. Who knows, one of us could be next to need this TX. You'll give us detailed, personal information, because that's what you do for us. Thanks is not enough, Vicki.
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Wow Z. That's beyond fabulous. A tiring day for sure but worth it. Take it easy now.
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Zarovka, you are my warrior princess. I am so glad that you are so aggressive with taking action on your behalf. Being your our advocate is so important. I am so glad that you met an angel today that made things possible, what a wonderful radiologist who helped move the process forward. Lifting you up!!
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Z. I am sorry to hear about your progression but amazed by your research and preparation. How great the radiologist went all out for you to get your biopsy. You are so helpful to all in this group and it was particularly nice to hear about you getting such wonderful support from this doctor. It must have been quite a day ending with your soccer dinner.
I look forward to learning more about your immunotherapy in Japan and am wishing for great results for you.0 -
Thanks all. I am going to the Tokyo for Autologous Immune Enhancement Therapy. It is sometimes referred to as natural killer cell therapy because that is one key and unchanging component of the procedure, but the type of AIET I will pursue has at least 15 components, each tunable to how your immune system and the cancer presents.
When I was researching the treatment in the spring of this year, the resident cancer microbiologist on Inspire, Fighterm, started a thread in response to questions I directed to her about this particularly treatment.
Early on in the Inspire thread I post about specifics of the treatment and a while later I follow up with some more details and references. You can find it all there along with comments and discussion. I'll keep posting over there becauseI know that fighterm will step in an correct any mis-statements I make if I post on that thread. I find immunotherapy terribly confusing.
The abscopal effect is when the immune system starts working against cancer. In the US we are (slowly) recognizing that the abscopal can be triggered by low dose radiation treatments like SBRT buy we don't know why. We treat it like a fortuitous but random event. AIET seeks to achieve the abscopal effect, deliberately. They treat cancer as a disease of the immune system and they treat the immune system, not the cancer.
I will document how this treatment goes and I am happy to share, but I will most likely put it together after it is over more like a single case study rather than a series of posts in a thread. In the meantime, you will get random complaints and observations while I travel in an extremely foreign land, dodging intercontinental missiles, with an 11 year old. Airfare to Japan was cheap and available on short notice. Thanks Kim Jong-un!
>Z<
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Oh Z, I'm so sorry that you had progression too. Heartbreaking. You are definitely in my thoughts and prayers. I sure hope this treatment kicks those sneaky cells to the curb. Please be careful in your travels, that is really scary especially with A 11 yo with you. Thoughts and prayers are with you. God will carry you through this. Wishing you only the best.
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Z- as you probably already know- Japan is a really safe country. The subway map looks very daunting, but, is very logical and easy to use. We also could always find someone to guide us if we did not figure it out. it seems like 1/3 of the people in Tokyo are underground in the subway at any one time, there are whole cities under there. Good luck with the treatment-I so hope that it works and that you and DD enjoy your stay!
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Your comment, Z, rang true for me. "They treat cancer as a disease of the immune system and they treat the immune system, not the cancer."
In dealing with lupus, scleroderma, autoimmune hypothyroid and cancer, my immune system is attacking me daily and not doing its job. It is a very sick immune system, indeed. I will be following your progressand information. Thank you.
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Zarovka, I am so sorry to hear of your progression. You have always been so supportive of me and all of us on these threads.
Interesting to think about the immune system and cancer. Mine has always been great, both prior to and during treatment. I didn't catch anything other than normals colds whilst on my first round of chemo (ACT) back in 2013, and neither under Ibrance and now Xeloda (well not been on that for long) But I read all the info you give with great interest, I think I might step up my reading (sometimes I feel a littlest reticent in case I find out something not encouraging for me) and really get to understand (if I can) What gets me is how it seems a game of chance what will work for some and won't for others!
I will be rooting for you on your next treatment course and admire you for your grit and determination.
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Z, I am sorry to hear about your progression but am so excited you have the NKC therapy opportunity in Japan. I can't wait to hear updates about your status and please take some time to enjoy Japan. You can take the high speed train from Tokyo to many other cities for day trips. When I was there, I visited Osaka, Kobe and Kyoto that way. Tokyo is one of my favorite cities in the world0
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Has anyone had any experience with
Radioembolization
I have mapping this Tuesday, with surgery booked for the following Tuesday, would appreciate any feedback
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Z, sorry to hear of progression, but my goodness the trial sounds exciting! Wish you all the best, safe travels and look forward to hearing how you go x
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ZZZZZZZZZZZZZZ cannot cannot even imagine your shock. I would thou love to hear your cursing. I am shaking as I am reading these posts. When are you going? I could send you a copy of D's biopsy results, i'll pm you. How did that dinner go?? anyone poisoned? Oh moms moms, one cannot even imagine the length we go for these kids...
I was looking for the right face, i did away with the ones with the docile face.
That angel the one you founs, is the one we all bump into from time to time, every bump in trying to get it right, (and there were tons) were only managed by these angels, every day so called medical people are working robots. NO is the vocabulary. Obviously your Onco is in the wrong business, i know you know that.
I am waiting for this week's BT if it's going up again, i sure hope they start gearing up for Immnuno. Can't even think straight till the results coming in, so much anxiety.
You've got the whole caravan here backing you up. Thanks so much for all the info you posted. You got this, baby.
NO1-2Nov were you feeling breathless? Dani got some lesions in her lung also and it got worse, but no rads are allowed in this trial, so we gotta wait it out. Would they do something about it for you?
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Emily Louise I've had radioembolization y-90. Is that what you're having? Some my info is on this thread but most is on the local treatment thread.
In general, it wasn't too hard for me. And the most recent scan showed no uptake in any of my multiple tumors.
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MomATT -
The cherry on the top was the phone call at 4:20 pm from my MO, as I was driving home from the biopsy, she wanted to know how I was doing ... first contact after my scan report had been posted the day before despite trying to reach her several times in the morning. I was gracious and grateful, as we must be. Proud of myself. We must keep our eye on the prize, which is getting the best care from a system over which we have very little control or even influence.
I just wrote her a lovely note, complementing her staff and explaining my upcoming treatment protocol. Chances are zero she will read it.
>Z<
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Oh the prize, know it too well. I've pretzel myself so many times, thanks to you and to these wonderful women here that reigned me in. I am quite patient person, really, BUT when I see injustice uggghhh i really have to work on myself!
You did good, you never know when you might need her, well she better be there for you. Trust me it all changes real fast when one of these in medical profession become a patient themselves or someone very close to them, they sure sing a different tune.
Best of luck for you in your wonderful endeavor
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Momallthetime,
It feels more like I could not take a deep breath. This has been a symptom for awhile and seems to be getting worse or more frequent. I had expressed this to my MO back in June. She checked with pharma regarding side effects to the various drugs for both cancer and the partial hand paralysis. Pharma assured her that the meds I was on should not be causing an issue. During my last visit in August we decided that we needed to get a scan. I do not know if this issue was present on the scans I had in June and the radiologist just did not mention the issue or if this is new. One of the causes of the partial collapse can be a result of surgery. I was on the OR table for 12 hours July '16 while they did major reconstruction on my back due to spinal tumors and a collapse causing spinal cord compression...hence the partial hand paralysis. No mets in the lungs...knock on wood. Hopefully my MO will call be this week and we can get this all sorted out.
Z...may the luck of my Irish ancestors travel with you on this journey. May the treatment be successful and may the outcome of your health return.
Hugs.
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Hi again, I need advice. I wrote here a couple of weeks ago - very anxious about liver pains and additional pains in my left side. I am newly diagnosed stage 4 with liver mets (as of May 2017) and have been on Faslodex/Ibrance since July. I have anxiously waited for the results of my first scan after starting treatment. I had the scan last week and have a scheduled appointment with an oncologist (not MY oncologist - as I always see a new one due to the public health care system in DK) this Thursday.
I just made the TERRIBLE mistake of going to my electronic medical log where all test-results are stored just to see my blood work results. However, the scan results were already there and accidentally I read them. It turns out that there is a huge progression in the number of liver mets. From several rather small lesions, the metastases have now grown to fill up one third of the right hepatic lobe + additional mets in the left. Besides that it seems that now the bones in my lower back have also been attacked. I'm in chock but not surprised. I have had so terrible pains in my liver – like knives turning around. And though I hoped it was a symptom of 'dying metastases' as some have suggested, I could hardly believe that.
I know from this forum that Ibrance can take up to 5-6 cycles to work. However, with this kind of progression on Faslodex/Ibrance would it not be wise to go to another kind of drug - or should I give it more time?
What kind of drug could be the next step after Ibrance/Faslodex (Letrozole has already failed me)?
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Lisbet - Sorry to read your post. I have ER+/HER- like you, I was on Ibrance + faslodex for 18 months before it failed. FYI at round 12 it killed all sternum mets and my lone lung met. After some progression to bone along with liver uptake, I tried Afinitor, but that failed too. Your onc may put you on Afinitor which is taken with an AI, and you may respond. However, for liver progression Xeloda is often next. Please speak with your onc. asap as all of us are different, but It is likely you will be switched due to major liver progression. There are also Y90 treatments, etc which you may be a candidate for. I will let the more savvy liver mets ladies add thoughts. Sending a gentle hug. Held og lykke.
(()) Claire with some Danish roots
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Lisbet, I am sorry to hear about your progression. I know how shocked you are, and how confusing it can be. I think that my MO will put me on Xeloda when I see more progression in my liver. It seems to work well for many people on these threads. There is a Xeloda thread, as you might already have discovered. It will give you lots of advice and information. I do read that thread as well as the Affinitor thread on a regular basis so I will be well-informed about SEs when it comes time for me to change treatment. I think it will keep me armed with questions for my MO. Xeloda's most common SE Is hand/foot syndrome. Many people on the Xeloda thread recommend lotions to help prevent and treat it, and they also say that a reduced dose can help. Some doctors prescribe taxol instead of Affinitor or Xeloda. It seems that many dr's prefer this if someone has pain or other physical symptoms or very quick, extensive progression. (Actually, that is just my opinion of their thinking from what I have read. Obviously, I have no medical background, so take these tidbits of information with that in mind.) if I remember correctly, you recently had a liver biopsy, so that is good. I am not sure if treatments are different in Denmark. Let us know what you learn at your appointment on Thursday. There are many effective treatments available, so focus on that.
Sending you hugs and prayers.
Lynne
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Lisbet I am so sorry to read of you progression. I am also new to Ibrance/Faslodex, just started in August, so I don't have much information to to provide, just want to let you know I thinking of you and sending good wishes.0
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Lisbet, I am so sorry you are facing this news. That sounds like sizable progression. My guess is your onc will put you on something else to get the disease under control more quickly. I am quitting Xeloda without even giving it a full cycle because it's just not doing the job fast enough. Hoping eribulin can do something for me. It's important to keep the liver happy. Keep us posted on what you find out.
My appointment is tomorrow. Had scans today but no results. An email with description of my ever expanding hard stomach and reduced appetite was enough to put my onc in full swing...scans ordered, biopsy ordered, US guided tap ordered (just in case), eribulin insurance approval ordered as well as opdivo off-study. I wasn't expecting all that. Just thought I'd give heads up to help her prep for my appointment following up about Xeloda and now I'm starting eribulin tomorrow instead. I feel comforted that she's so on it, but all the immediacy makes me feel I'm in serious trouble if something doesn't pan out fast. Fingers crossed that those scans aren't as bad as I fear they may be. Can't ever get over how fast things can change with this craptastic disease.
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Kaay- Opodivo is that the first time you've had immunotherapy? with triple-negative the response rate has been relatively high, and I think better when treating progression, and better when in combination with some other kind of therapy. So, this therapy might work well! And also if you have BRCA-mutant cancer, then PARP inhibitor with immuno is attractive, and Syros is coming out with a CDK7 inhibitor that looks good (check for trials they just started) but really with triple-negative, I think I'd ask for some version or another of immunotherapy with any and every drug I was taking, just in case of hitting a synergy- good luck!!
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Kaayborg, WTH seriously...but i must say i love your Onco, gr8 work!!! Action, action that's what's needed. Someone that gives a damn. Fingers crossed for good scans. Tip about Ixempra - low platelets...low wbc...gotta watch those BT's. Dani was on it at the beginning of the year. But doable.
Lisbeth so sorry you gotta deal with this progression. Taxol has worked for many ladies. Hope Onco figures it out real fast.
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Well Dani is right now at the ER, i was called for emergency baby sittiing. Blood in the urine, clots... She hasn't seen a doc yet. She had this a week ago, but no clots, now was with clots. I just sent a message in the portal to the docs office. When we called docs # and it says press 0 for emergency, well anyway, the doc on call didn't call back, receptionist said he's behind calls. I wrote on the portal, that when a patient is bleeding and calls the emergency # a doc should call back, and if he can't he should have someone call back. She headed there not waiting for their call back, that's for sure. Maybe it's a kidney stone, who knows...I hope it's not more tumors...I wrote it's incompetent of them. So if this is messed up she might start to get to another wagon earlier than expected. In the trials, they don't allow any other care, so if she will need something she's off it. Gonna be a long night. Let you know tomorrow.0
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Mom, I pray that the hospital is able to figure out what is going on with Dani's symptoms. Very smart for her to head there and not wait for a call back. So shady about doctor's emergency call line. That is unreal.
Lisbet, Xeloda is a likely choice for you given your history and liver progression. It works particularly well for liver mets as it is taken in an inactive form and then becomes active in the liver and in tumor cells. Keep in mind easy come, easy go. Mets that crop up quickly also tend to die quickly! Keep us posted on what the MO recommends.
Kaay, your MO is all over it! So great to know there are good ones out there. I hope Halaven gets your liver back into its old self in no time.0 -
Kaay - I like the fact that your MO is being proactive. It's scary I know, I was in your shoes in May, things moved so fast my head was spinning. I will be thinking of you today.
Lisbet - best wishes with your next tx.
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