How are people with liver mets doing?
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Thanks for the posts. So it appears there is nothing"new" in the liver but still questioning why belly is full of fluid. Going off Doxil and on to CMF this Thurs. I'm afraid numbers went up because there is disease in my stomach Dr says not sure, nothing showed on scan but that didn't mean they aren't there. For now I feel like crap and am emotionally drained. I am hoping the triple drug combo works. I have asked him about xeloda, can't remember what he said.
Someone find a cure please!!!!!
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Shetland - I hope your bloating and reflux is just Xeloda. I am with you on trading in our Cancerland passes and changing to an E ticket to Disneyland (lol its been years since they had those) or Candyland. I'm planning to graduate to X soon, so please wait for me.
My Foundation One gene test found nothing. Expensive, but glad I took it in case there was a mutant gene to be concerned about. Hoping Z is holding up in Japan. You are both inspirations to me.(()) C
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I'm holding a seat for you on the X train, lalady! It's good to get the info from F1, even if it says nothing was found. One good thing -- I read that fewer mutations can mean better prognosis. My F1 (in 2014) only found two known-significant tumor mutations, neither actionable, both typical ILC. The inspiration is mutual.
Z, correct; my F1 did not do ER, PR, or IHC.
LvinAZ, I meant to respond to you earlier. Not knowing what is going on is very hard. May I ask if it is ILC? Have they said whether they can drain some fluid to make you more comfortable, and test it? Take care and may the new combo work amazingly well.
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it's back. Today my onc told me that my cancer was back in my liver. At least 3 lesions. Will be starting a diffeeent regimen next week. Lots to process. In my gut I knew but was still hopeful.
Thanks everyone. When my eyes clear, I will catch up in this thread.
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Yes, it sends you reeling, leftfoot. Incredibly, in a short time, your new treatment might seem business as usual. At least that's how it felt to me.
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Leftfoot can you have local treatment like y90, SBRT or RFA?
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barring- my onc wanted to try targeted treatment first. Said since there were multiple lesions that she wants systemic treatment. I will ask her about Y90.
You guys are such great support and resources. Thank yo
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Shetland, I am rooting for you and keeping fingers crossed that the bloating and other symptoms turn out to be nothing.
Z, so terrible about your biopsy. Deja vu to what just happened to me. Missing samples. Where did they go?! How can professionals be so careless to send things to the wrong place when this is a very large part of their job? I haven't found any solutions in my situation but wanted to to say I feel your pain. With respect to cost of treatments in Japan, does the clinic you are being treated at have pre-established rates for international patients (whose insurance would not cover this)? I ask because I would seriously consider doing the same thing at some point.
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Z. You are truly amazing! You are truly one of the bravest people I know! I am so hoping this treatment works for you. !!! How long will you be there?
Wendy loved hearing about your results. Do a happy dance!
Kaylynne always report your symptoms to your mo just to be sure
I get scans and see a neurologist because of the neuropathy in my rt leg tomorrow My MO is thinking it's from a degenerative disc she saw on an old scan. I sure hope so! I'm thinking my scans will be good since my TMs are down. Fingers crossed!
Bab
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I am in Japan for 5 weeks.
The treatment takes 4 weeks and costs about 20K. Same price as for Japanese clients of the primarily Japanese medical clinic. The clinic is known for neurosurgery worldwide, but not as much for cancer. Some components of this treatment are covered under Japanese healthcare insurance. This treatment is administered at this clinic by the guy who invented those components and includes his full research protocol. It looks to me like my doctor runs his clinic within this much larger clinic two days a week. Dr. Terunuma is primarily a researcher and he the Dr. Rosenberg of Asia.
Wrapping up a long day at Tosho-Gu, a shrine to Tokugawa Ieyasu, the shogun that unified Japan and started a 260 year period of peace known as the Tokugawa Shogunate. This is known as the Edo period and saw the rise of Tokyo as the main city as well as an explosion of art and culture. Quite the guy, but not a humble man. In his will, Tokugawa Ieyasu ordered that he should be deified. I am totally going to do that.
Tomorrow is the first of two chemo IV's I get as part of the treatment. It's a low dose of gemzar. The intent of the chemo is not to kill the cancer but to to wipe out parts of the immune system that inhibit the cancer killing parts. Crazy complicated s@#t going on here, ladies. 2 hour outpatient visit and then off to the Japanese alps for a week.
Livin- something is wrong. That fluid should not be there. But at least it isn't raging liver mets. Don't let the doctors rest until they get to the bottom of this. Until then, watching you tube videos of puppies is not a bad idea at all. Gives your mind a break ... so you can stay in the game. How are you feeling?
Babs - fingers crossed the scans are what you want. Here's to degenerative disks! The things we wish for these days.
JFL - I thought of you as soon as it was clear my clinic does not know where the bulk of my tissue went. The mistakes with biopsy/pathology report appear to be endless. It helps a lot not to be alone, but the most helpful thing would be if they could keep track of the damn tissue, evaluate it properly, etc. Crazy. I asked a few questions immediately after the biopsy about where the tissue was and were it was going ... got answers but apparently no one really checked as I asked them to.
>Z<
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Leftfoot - I'm sorry to read of your progression. Take the time to digest and best wishes on your new regimen.
Livn - like Z said, don't let the doctors rest until they find the reason of this fluid. Hope you feel better soon.
I started my new chemo yesterday, Ellence (Epirubicin). Injection of red liquid over 20 minutes. So far so good. Hoping this will slow down progression.
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Linda, I hope this TX works for you. I hate hearing all of this progression. It's so nerve racking. I'm thinking oh everyone. Hugs to all!,
Anita
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Wendy3,
I will have scans December 12th. I am so happy for you! That is fantastic news and gives me so much hope.
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So much drama going on here lately. My mind can't even contain it all.
So, so, so very glad to hear from you again Lvin. Sucks there aren't any clear answers yet but what's new with this disease? We have troubles and then try to be patient and wait for the next thing. Best wishes on CMF.
Shetland, day 2 of my first eribulin treatment I developed 103 degree temperature which persists even now. However, after spending a few days in the hospital and ruling out all infection, they determined it a tumor fever and the magic OVC med, Alieve controls the fever so I feel well. Could be a great sign that tumors are getting kicked to the curb. I do hope all is well with you and recent bloating is nothing to do with X's lack of effectiveness. Hate waiting!!!!
Leftfoot, what a blow for sure. Coming off treatment that had been effective for so long is so tough. I sometimes find myself affectionately longing for carboplatin again even though I know it would do nothing for me. I just get in my groove and hate to leave it. Not really a change loving person.
Z, I cannot even fathom your adventurous spirit. Nothing's going gonna stand in your way...not even missing tumor samples. I just know it.
Linda, best wishes on your new thang. That chemo is not one familiar to me. Is it like A/C? The red injected liquid part is the same.
Babs, good luck on those scans. We could use some good news around here.
Momall, what's up with Dani now? I do hope she finds stability soon.
I was supposed to have treatment yesterday but flunked out. It's never what you expect. My platelets were flying high but neutrophils dropped from 631 to 20 in one day???? Why in the world did that happen? We will try again on Friday. Until then I'm steering clear of the public world, especially the four walls that contain my 21 snotty-nosed students. After all that, please don't let me get an actual infection.
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kaayborg and hartrish, I see you both have tried Carbo/Gemzar. Any suggestions for me? I just had the combo on Monday and the stomach cramps/nausea are not getting much better, but I know it is early. It's comforting to see some familiar faces here.
Momma....how are you holding up? Has Dani had any break at all?
Anita, Photo therapy please. I can't get out right now to use my camera.
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kaayborg and hartrish, I see you both have tried Carbo/Gemzar. Any suggestions for me? I just had the combo on Monday and the stomach cramps/nausea are not getting much better, but I know it is early. It's comforting to see some familiar faces here.
Momma....how are you holding up? Has Dani had any break at all?
Anita, Photo therapy please. I can't get out right now to use my camera.
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- zarovka I know a thing or two about core biopsies as a nurse who has helped with many. They usually take a few core samples (the report is correct) the tiny slivers of liver
tissue are all put into a specimen bottle and float in a preservative. There would be only "one" sample bottle, therefore yes there was "one" specimen sent to foundation one. The question is did they discard what they didn't use after taking out the best core. Some tech at foundation one must know how it was processed, surely the Dr dictates something...grr. Hope the chemo isn't too hard on you but hard enough that the T-cells do their job when they tweak them and return them to you.
Kaayborg: nice to see you out of the hospital!
I'm heading for my 6 month follow-up CT scan after SBRT. It's always frightening as we know things can change so quickly
0 - zarovka I know a thing or two about core biopsies as a nurse who has helped with many. They usually take a few core samples (the report is correct) the tiny slivers of liver
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It does seem like everyone is having " events" of one type or another. Nothing stays the same on this fast moving thread. I guess I'm the most boring livermetster, at this moment in time. The only (unrelated) thing I have is a bad case of poison ivy all over my face. I can deal with it, even though I may have to miss a week of Ibrance till it clears up.
How on earth can mistakes be made with something as important as a liver biopsy? If it can happen to Z and Bstein, it can happen to any of us. There's no one more prepared for the unexpected than Z, what should we do? Hire a private detective to follow the sample wherever it goes? Ridiculous!
Leftfoot, I felt my heart drop when I read "it's back". The most dreaded words in our vocabulary. Although there are many ladies here that know a zillion times more than I do about MBC, I do have personal experience with y90. My MO let me stay on Ibrance and Femara while I was having my procedures. So i got the benefit of systematic and local treatment simultaneously. The best news is that it worked for me. YAY
I'm praying for all of you. You stay on my mind everyday, all day.😍
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Correction, it was JFL whose BX was also lost.
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lindalou: just started my second round of carbo/gemzar. Very few problems with 1st cycle. Constipation was my biggest issue and some sore back muscles. Felt a little nauseous but start taking Zofran on day 2 after infusion for 3 days. Seems to help prevent. My liver enzymes are way down from 1st cycle so onc thinks I am having a good response. TM should be in tomorrow or Friday. Hoping it is trending down.
I also take Prilosec and probiotics. Not sure if that helps with stomach pain and truthly I thought my stomach discomfort was from constipation. I might need to rethink that since I know Gemzar can cause that too.
Hope you feel better soon.
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Z, I am echo'ing bstein. As a perioperative nurse I have assisted in many core biopsies. Unless there were very, very, specific instructions by your MO regarding the division of the samples attached to the biopsy orders and those instructions actually made it to the order, all of the tissue was placed into one jar of preservative, labeled, and placed into a specimen bag to be delivered to the facility lab. The lab would have then prepared the tissue for shipment. Just surmising on my part but I will bet one of two things happened. MO placed instructions into or on the order. Office staff called the OR to schedule procedure. OR staff did not relay complete information to the OR office staff or the OR office staff did not take complete orders. Once in the OR no specific instructions regarding specimen handling so standard protocol was followed.
I will be following your progress on Inspire with much interest. I may be following in your footsteps at some point.
Leftfoot...darn, darn, darn, darn, darn.
kaayborg, I laughed at your comment about 21 snotty-nosed kiddos. I was a school nurse for a few years and I loved taking care of all those little petri dishes. Every night I would come home and look at the front of my scrubs...let's just say I would look at my husband and say "Wow, look at all the hugs and love I got today!"
Was wondering if at this time of year any of you wonder about future holiday seasons?
Hugs to all.
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Z, I am echo'ing bstein. As a perioperative nurse I have assisted in many core biopsies. Unless there were very, very, specific instructions by your MO regarding the division of the samples attached to the biopsy orders and those instructions actually made it to the order, all of the tissue was placed into one jar of preservative, labeled, and placed into a specimen bag to be delivered to the facility lab. The lab would have then prepared the tissue for shipment. Just surmising on my part but I will bet one of two things happened. MO placed instructions into or on the order. Office staff called the OR to schedule procedure. OR staff did not relay complete information to the OR office staff or the OR office staff did not take complete orders. Once in the OR no specific instructions regarding specimen handling so standard protocol was followed.
I will be following your progress on Inspire with much interest. I may be following in your footsteps at some point.
Leftfoot...darn, darn, darn, darn, darn.
kaayborg, I laughed at your comment about 21 snotty-nosed kiddos. I was a school nurse for a few years and I loved taking care of all those little petri dishes. Every night I would come home and look at the front of my scrubs...let's just say I would look at my husband and say "Wow, look at all the hugs and love I got today!"
Was wondering if at this time of year any of you wonder about future holiday seasons?
Hugs to all.
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no1-2nv: I do think about future holiday seasons but just cannot dwell on it. My liver Mets is so new to me that I think from one spectrum to the next.
But for this holiday season I hope to fly to Jackdon Hole WY. Never been in big snow since I am a Georgia girl. Going to do some snowmobiling, ice fishing, tubing, and wildlife excursions. Hoping my treatment works so I can go on the trip and have a great time.
Just pushing forward with positive thinkin
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Leftfoot, I'm so sorry, What a downer to hear it's back. Shetland is right though, they will get you going on something new and soon it will be "business as usual".
Shetland, I hope the bloating is just an SE as well and clears up soon. None of us needs the stress of wondering about another symptom.
Lvn, Sooooo glad to hear there is nothing new. Can't believe you are still dealing with the fluid issue though. They must do something to alleviate this symptom.
kaayborg, I'm so glad you are back at home and managing the fever. Tumor kill off! Hope you can resume treatment on Friday. I work at a school too and have no desire to be around the "petri dish" environment although I do miss work......
babs, holding you in thought as you get those scans! Neuropathy just stinks. My hands barely work today.
Linda, I hope that red infusion kicks BUTT too with no SE's!
Lindalou, bleck to the cramps and nausea. Hope you are feeling much better today.
Grannax, Poison ivy on your face!!! Misery is all I can say. Hope it clears up FAST!
NO1, I think we all think of future Holidays this time of year...how much we will miss them someday. I love this time of year all the way through Christmas and I try not to think of what if, but it does hit me anyway.
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Just read the last two pages - my support to all of you. What a team!
Wendy - so good to hear the clear scan and some freedom. The best to you in making the most of free time, less worries and feeling better.
Z - the Japanese Alps? Now we all want to go. And with the lost core does this mean you will need to 'provide' another pecimen for the tests you still need?
Momma - how is Dani? How are you?
Hartrish - Planning and dreaming those trips is half the fun - make it incredible. I am right now plotting how to get in therapy and still go the the UP in late October, early November, a long state drive up Michigan from here. This cancer stuff is messing up my schedule.
Lindalou - here's a photo of the autumn to come, until Anita posts hers. It's a favourite of mine and I post it often this time of year. Down hill and across meadow from our front window, we drove over to get close up.
Lisbet - on the note of antihistamines. Long story short, I recently was circling the ER for the weekend due to reaction to a corticosteroid and Benadryl made me worse. Soooo my DNP got me in Mon AM and she knows how sensitive my body is and told me to talk Pepcid AC and Claritin together twice a day. These are H1 and H2 histamine blockers. Within 2 hours I was better, heart racing gone, rash moving back, hives calming and my very real physical 'excitement / anxiety' was calm too. Four days and it was gone. Sometimes the simplest things are the answer. So this may be one more anxiety off your list, run it by your doctors.
Leftfoot and all with mets and / or progression - huge hugs. I am in the same canoe in my own way. Which leads me to the next post for intel. Need insight and info.
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Will be posting this in 3 forums, researching on my own too and looking into my last year of scans and labs for clues. Hoping for the information needed to unravel a puzzle.
Good news and bad news. And a huge question.
PET CT of brain / body was clear, all evidence of active disease was clear.
I had cycles of radiation in 1) supraclavical broad basin and at a lymph node mass that was severely compressing a bronchial tube. And I did Ibrance/Femara for 5 mo (which stopped working at 2 1/2 mo) then Xeloda 2000 mg 2x day at ave 10 days on 7 off. Five full cycles.
OK - Bad news.
The one lesion in lover is doubled w 2x SUV uptake too. Plus another is next two it. These are about 2-in x 1 1/2- in on 1st and 1 1/2-in x 1-in on 2nd.
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1. How is it I was on the GO-TO chemo for liver mets and this has happened?
2. Do I need a liver biopsy to be certain this is MBC mets to liver and not liver cancer or some other?
3. I have been given all options that includes going to a liver center at U of MI or IU for tx discussion. Or radiation at the center I am at which has one of the three state of the arc machines in the region. So good hands there I am assuming.
RADIATION
To say I did well on radiation is not true. I got pneumonitis and am still suffering from that! I have lupus and had a lupus flare like none before and feel like it is still ongoing even since April/May rads. I am an inflamed mess, not able to take steroids to help and allergic to cough syrup as we know it. At least the joint pain and fire stopped at three weeks out, but the photosensitivity / radiation is frankly what could kill me quicker than the cancer.
4. Surgery is out, lungs need saved for when there are no other choices.
5. I am considering an IV chemo. Going after the lesions and any floating cells tht can be got, those that are just never going to show on a scan until they begin to multiply. Though knowing it is not the full answer.
6. Also will be back on Arimidex and hopefully Faslodex.
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So what insight on why this happened. And what could be done now as far as treatment, local or chemo? THANK YOU!!!
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BTW - I love this standin oncologist at the center. We are a team. And he understands you all are a part of the team. I feel positive and better today.
FYI - This is my after time in full shade one morning, May 2017, was a mild Spring day so played in my garden under a hat and a lot of clothes. Malar rash w/ hot boils. I learned not to that again.
and my usual malar rash is like this after real time in the sun.... followed with raging joint pain that I never have, exhaustion and fever, usually two weeks duration. April 2016.
Diane (Bluebird)
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Bluebird. Have you ever had a liver BX? If not, I think that would be a good idea.
I know you said no surgery but what about y90. They don't put you all the way out for the procedure, just IV sedation. They do use y90 spheres but they stay in the liver.
As to why, liver mets are just more stubborn and persistent than other mets. That's my experience, anyway.
Sounds like your team is giving you all the options. I'm sure all the ladies here will add their advice, too.
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Bluebird, I suppose the liver tumors figured out a way around X, so another chemo might work better on them. Each cancer is unique and it changes over time. Nasty buggers. If your doc is offering you a chance to talk with a liver specialist, I'd take it. See what that doctor says about biopsy. It could be useful for picking the right chemo if they can send it to Foundation One or Caris, and they could also check ER PR Her2. On the other hand, they have to consider if your body can deal with a biopsy at this time. Also ask the liver specialist and your onc to discuss chemo vs. local treatment. The Y90 radioembolization may not be recommended for you because of lupus, but would proton treatment be any better? What about radiofrequency ablation? It's so great that the stand-in onc is good to work with. Can you stay with that person?
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I wish I could stay w him Shetland but he is a roaming oncologist, filling in across the country a week here and a few months there. He is not inclined to change his practice and freedom, he loves it.
I have discovered from a few suggestions that the SBRT is quick and also in this area, a few hrs drive. But the CyberKnife http://www.roafw.com/content/cyberknife-non-invasi... is very interesting to me since it can be done in a day and w the least exposure.
And yes, I am thinking a biopsy would benefit but I am not sure bcz I do not think being under anesthesia will benefit my lungs by any means.
Dr. D wants me back on Arimidex along w Xeloda - I am rethinking the Xeloda but don't know the other choice - if I can revisit Faslodex Arimidex I would do that and see how I fare once the lesions are removed. But only if I have one infusion technologist / nurse each time who understands how to do it correctly w/o me teaching them and watching my back. Went through the wringer w the first time on it, learned the hard way. My butt is smaller now, should help too.
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Bluebird: for my liver biopsy I was under sedation not anesthesia if this helps.
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