How are people with liver mets doing?
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My wife's ascites has really gone down. We are now only draining off 100 ml per four days. The Doctor thinks its entirely due to the diuretics, but I am optimistic that a fluid accumulation that has gone down from 5 liters to 100ml (50x change) is due to more than just the diuretics. The Doctor has as of yesterday, put Bev on blood thinners, a daily injection, to try to improve blood flow through her liver. And, he is talking about having a shunt installed. I'm skeptical that is needed. From what I read, a TIPS procedure should be a last resort, when nothing else works. It seems to me the problem is either nearly fully resolved, or treated with the diuretics. I hope they think this through fully before proceeding. I think he is acting based on her status a month ago, and not right now. As someone advised, trust your intuition. And our intuition is questioning this.
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Timothy, that sounds like good news to me. Are you able to get a second opinion about the shunt? I believe I remember you mentioned difficulty with this before but can't remember why. I think you are right to question and trust your intuition. A second expert opinion helps too. It made all the difference to me when I questioned a plastic surgeon's care. The second opinion did much to confirm my intuitions were indeed correct.
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Hi Timothy,
That sounds like such good news!
I'm so happy that your wife's annoying ascites symptom has been eased and hope she'll be released from it as treatment proves effective.
BTW, it's not just intuition but logic that says - why go chasing a trouble that was there then, but isn't here now.
There's plenty to attend to in real time and there's no time like the present to enjoy the now.
warmest of hugs for both of you, Stephanie
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Hi Artist,
I too deal with dry mouth (aka xerostomia).
This recent Smart Patients post had some great tips -
https://www.smartpatients.com/conversations/22125-...
(free registration required)
I'm going to try marinating meat before cooking it and also more soups, stews and moist foods. Unfortunately, my giant liver is pressing my tiny tummy, so I can't fit in much bulk. Nutrient dense food is a must...though watermelon is very, very good too.
Artist, hoping you find some mouth friendly solutions - be sure to share them when you do.
warmest healing wishes for all, Stephanie
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babs, Good for you for getting back on that bike! You sound like me. I seem to always find something else to do to avoid getting outside and moving. At least I move around in the house vacuuming, laundry ect. But that is not the same at all. My wrist is feeling better so am going to ask the DH to get my bike down off the garage ceiling tonight and give that a try tomorrow. Thanks for the inspiration.
Leftfoot, Hiking and walking in the emerald hills of Ireland sounds like heaven to me. And trust me, NONE of us could keep up with our kids! Just being able to go along is good enough...
kaayborg, I wish so much that you can catch a damn break. I'm hoping that as your body adjust to the Carbo maybe the allergic reaction and low counts will adjust as well. None of us ever wants to quite something that is working. Again, I am in awe that you are getting out and running. I am going outside as soon as I a done here. You ladies are all the inspiration I need!
Timothy, That is such great news. I know just a week or so ago your beloved wife was having a very rough time. I am so glad she is feeling better. I would definitely follow your intuition and "logic" as Stephanie says and gets a second opinion. I too have heard that a shunt is something you want to avoid as long as possible.
Stephanie, Thanks so much for the link! I will read it in a sec here. The dry mouth is getting better because my nasal passages are clearing on my week off of Ibrance. (The key is to blow often to clear out any gunk.....TMI) I feel like I have a constant low grade cold on this med. Also the drug itself causes dehydration, including my nasals, so I have guzzling water and ice tea (with bitters! :>) I also have a dry mouth rinse I have started using again. I am not much of a meat fan but when I do, marinating huh? I will give that a try. And yes! Watermelon has been a major part of my diet lately. Sooooo good. I am paying much more attention to nutrient dense meals as well. I have a pretty nutritious smoothie almost every morning to start off right. It reminds me to keep it going for the rest of the day. The hard part is when the DH is home on the weekends and wants steak, potatoes, ice cream, pizza ect ect. I have promised myself to use the summer to learn lots of new healthy recipes that he will like that will wean him off of all the junk, thereby a better influence on me.
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Artist, your angst on my behalf is touching. It surely would be nice to a catch a break. How about a big one for all of us? I am strangely okay about the whole thing though. Probably not so realistic but I've got this idea in my head that carbo is just going to keep me stable even if I only can get it once a month or at reduced dosage. I'm just feeling so stupidly positive. Why bother with reality or likelihoods? What happens seems to be anyone's guess. So? How was the bike ride? I'm so glad your wrist is up to it.
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kaayborg, Most days I think I'm OK with it. I definitely live in a state of "push it out of my mind" when I can for now. Appreciate today and feeling well enough. I agree wholeheartedly, why bother with the "what ifs" blah blah blah........ It only serves to ruin my day, week, mental outlook. Of course I have my moments of very DARK clouds. But I also believe anything can happen, including being a super exceptional responder, science bringing in newer meds everyday, who knows? I just had a young 30's neighbor down the street that was tragically killed yesterday while rock climbing so it just goes to show life is a total crapshoot! My bike ride was good. My wrist is still weak so we only went around the neighborhood, but it is pretty hilly and about 4 miles. It felt so good to get my lungs full of fresh air. Have to say I was huffing and puffing a bit. I need to do it several times a week! We went a saw an epic concert last night, Sting and Peter Gabriel. It was awesome! Live music is "my thing".
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Artist, I'm with you 100%. So glad you had such an awesome night!
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Hi, just learned on Wednesday I have liver mets. A few larger lesions but mostly diffuse activity per pet/ct. Liver MRI and hopefully biopsy next week. Waiting on schedule but will know for sure by noon on Monday as gemzar/carbo chemo scheduled at 3:00. Biopsy is making me nervous. Can you tell me what to expect?
A couple names I recognize Artist Of Lake Tahoe and Naturegirl from the Faslodex/Ibrance thread. I'm sorry to see you on this thread too. You're advice in the past has been so helpful.
Thanks, shelby
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Shelby, sorry for your new challenge. My liver biopsy was the easiest procedure I have had. It's fairly quick & I had no pain from that. My liver was screaming, I had innumerable mets, my liver was very swollen & hard. Taxotere has got it controlled, which is great, but it has spread to bones, spine & I think my lungs.....Oy...
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Shelby my liver biopsy was really easy. In my case they had to go through my lung due to the mets location. The what ifs were scary but it ended up being so nothing!!!!!
Artist. Yes my bike ride also made me huff and puff. It made me realize how out of shape I am. Once it's little cooler I plan to rectify that. It's just too hot and humid now
Babs
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Shelby, I'm so sorry you have had to join us. This is a great group to come to for support. I had a liver biopsy in March, and I did not think it was too difficult Hoping you have an easy time of it as well.
Hugs, Melanie
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Shelby, count me as another with an easy liver biopsy. I don't think you have much to worry about there. I'll also add that I have tolerated gem/carbo very well (though it is hard on counts) and it has worked great on my liver mets. I hope the same for you.
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Shelby, That stinks that you have to be here now.......Same with me, the biopsy wasn't bad at all. I had one moment of slight discomfort then it was over.
babs, Me too on the out of shape. My leg muscles did good but the aerobic side is lacking for sure. Went again today though and even did a few inclines that were harder on my wrist than my lungs. Felt really good after although it was pretty hot here too. Definitely have to aim for the morning before it heats up.
Holeinone, I'm sorry.....you are having a hell of a time. I hope those meds kick in and kick butt.
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Same here, my liver biopsy was easy and just sore afterwards. Good luck and keep us posted!
Alissa
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Thanks for the info on the liver biopsy. I think I might be joining y'all.....blood work too high, liver pain and just had the ultrasound this morning that showed a lot of lesions and one for sure with vascular activity. Wondering when I'll get "the call".....
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oof barbe. hang in there. as always, once they can complete the scans and biopsies and you have a treatment plan, things get easier. you know the drill. mentally, this is the hard part.
my liver biopsy was so easy that i kinda ignored the fact that i had had minor surgery and some powerful drugs to help me space out. take it easy a bit the week after. we have all kinds of stuff going on and we may not heal as fast as we used to. the only thing on the surface was a band aid covering a pin prick, but it is deep wound. take care.
wonderful to hear about everyone huffing and puffing up hills on their bikes. it's hard to get out there with everything we are dealing with, but so healing. go ladies! keep it up.
>Z<
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Last week we drained my wife's ascite's and only got 100 ml after 4 days. Tonight we drained her, and after 7 days, there was virtually no fluid. Only enough to fill the line and just a teaspoon in the bag. That's a huge change from 5L in 7 days at her peak. It's been going down fairly steadily now for over a month. I am in disbelief that the diuretics alone could account for such a drastic change, 5L going down to virtually nothing. The Doctor doesn't think her liver could have healed in that length of time, but I think its possible that it is healing. She feels so much better, has much less abdominal swelling, and now no ascites. I think this corresponds with her tumor markers falling so much. Thanks be to God.
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Timothy, Great news! Happy dance to you & your wife.....
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Timothy that's wonderful. Yes as hole in one said its happy dance time for you and your wife!
Babs
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Barbe, sorry to hear that you may have liver progression.
Just learned yesterday that my liver is within 3-4" of my pubic bone and ileac crest, when it used to be tucked up under my rib cage like a normal-sized liver.
Progression is always scary.
Good to hear from so many that liver biopsies weren't difficult for them.
In spite of 2.5+ years with liver mets, I've never had a liver biopsy, since it wouldn't have changed my treatment plan or approach.
Barbe, sending loving kindness and healing light as you wander into new and scary territory, Stephanie
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Thanks guys, I appreciate any prayers. Timothy, fab news on the ascities for your wife! I'm already on a diuretic (full pill of Hydrochlorothyazide) for high blood pressure. Most people have to break the pill in half, but I've been on a full pill for years. My abdomen is swollen like I'm pregnant and it makes me breathless....
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Yes sorry barbe to hear about the progression. But Z is right things will get easier, dare I say routine? Timothy, wonderful news! It is always so great to hear of someone struggling to catch a break. Yes Z, getting out and moving does wonders for my psych and over all wellness. After a week off of the ibrance my liver enzymes are on the way back down. So it is definitely the culprit. On the flip side my TM's rose again......Get another scan on August only two months after the last one. Here we go on the roller coaster again.
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The liver specialist is still pressing my wife to get a shunt installed. I wish I had been part of the telephone conversation, but he told her that it would reduce the damage to her liver and allow it to heal. I'm no Doctor, but from what I have read about a tips procedure, they bypass the liver to relieve portal hypertension which causes ascites and potential (esophogeal) bleeding. I haven't read anything that says it helps the liver recover. Anyone know anything about this? If that's the case and its reversible, that would speak in favor of it. We are trying to get a consultation with him, although he doesn't do the procedure, and the radiologist that does, doesn't do consults. Talk about confounding.
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Timothy, I am so happy to hear this wonderful news. I wish I had advice for you about the shunt but I've no idea about any of this. Best wishes in figuring out the consultation. So frustrating that is so difficult to obtain! I think I would want to ask about whether or not there are risks to waiting to get the shunt until it seems more necessary and weigh them against potential benefits to getting it right now.
As for me, I actually got chemo today and had no allergic reaction! That means I had a full treatment cycle for the first time in probably 3 months I'm guessing! Platelets were technically too low for treatment (require 75, I was 68), so I need to get blood work next week to make sure they don't get hit too hard. My infusion also took 4 hours with 16 steps! My total visit was from 8:15 - 3:45. Ugghhh on that for the new norm but I can't complain. It worked! I'm feeling well and hanging on to my first line of treatment, nearing a year and hopefully well beyond!
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I know this isn't the alternative medicine forum, but I've read that papaya leaf extract boosts platelet count in some people, and does it rather quickly. I would be loath to use it combined with any treatment for fear of some interaction. But using it while off chemo might be something to at least ask about. Good to hear your treatment went session went well. There are so many obstacles and issues dealing with these treatments. I sure don't need to tell you that as you already know, but it weighs heavily.
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kaayborg, That's great! I guess your body is adjusting...here is to WELL beyond! Gosh, 7 1/2 hours! Did you bring a good book and snacks?
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Timothy, I just read about that a few nights ago as I was feeling desperate about it all. I never know what to think of alternative therapies. So wish we knew more about them. Your mentioning it again does make me think I should at least ask my onc about it.
Artist, it wasn't too bad...slept, read a little, played games with the girls but I'm gonna be sucking up the sick days fast once school is in. I was taking half days before. We'll figure something out I suppose. Can't not work or go into unpaid status and lose insurance. Hubby has been the stay at home parent and we're working on finding career for him but it'll take time. Eek!
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Hi Timothy,
I'm with you on the reluctance to undergo another and possibly inappropriate (or inappropriately timed) medical intervention.
We're very supportive here, but how about getting a knowledgable medical second opinion? Try finding someone from a different medical specialty - a hepatologist, gastroenterologist or palliative care specialist - someone who can step back and look at the big picture and also knows how to have a healthy liver.
I continue to coddle my liver, though it's quite large and ascites continue at a liter a day. The drain line is clogging and requires daily flushes, before giving up the fluid now. Never a dull moment!
Timothy, wishing you both many healthy and peaceful moments!
warmest healing regards, Stephanie
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Ok major migraine, check! But I do wanna update everyone, so sorry if you guys are in some of the same threads.
Appointment went well. Regimen, Navelbine 2 wks on/1 wk off with Herceptin every 3wks, and Xgeva 6wks. That's IT. What say you?? I don't recall who is on Navelbine, I think I just read about it yesterday. I have to reread some threads, but cannot do it today, that's for sure.Was a bit of a anticlimax, about the Treatment. Xeloda maybe some other time, and she has some clinical trials in mind and biologics in the future. What's biologics, could not understand. She's not into Immunotherapy for Dani's case, it's not proven yet.
Well during the physical, ANOTHER node was found under the axila, REALLY??( what the…) so off for a PET/CT she goes again, probably still this week, waiting for approval. And I guess then it will be definitive. Still have to see Rad Onco this Friday particularly for the skull Mets.
Maybe they will keep Letrozole. Ibrance is a gonner, she does not think it's helping in Dani's case. Liver depends what this PET/CT shows. If it's next to each other, if it already got larger? Ablation, maybe? Z, I have to ask her about the Alpha lipoic Acid. .Really wanted Xeloda now. But...
She did see in F1 Dani may have the mutation TP53, she wants to do a BT to make sure it's in the tumor and only in the tumor not in the whole body(which she does not think it is, but just to make sure for the sake of the relationship with kids/sibs, to make sure it's not Genetic).Otherwise she does not think there is much to get to TP53.
Off to Geneticist we went, she will do the BT when she comes in for the infusion. Also of course the newer mutations, like PALB2.
Also in one of the threads I remember much convo regarding Luminal, yep, she weighs this. Dani has Luminal B, and that says a lot about the status.
She can't do Tykerk/Xeloda, bcs in that trial if u were on Tykerb already then it's a no no.
Everyone it's been a long day, but I thought of you guys the whole time. I was able to understand a lot due to our conversations here.
Check on you tomorrow! Great night to everyone.
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