How are people with liver mets doing?
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Bluebird, lovely snow moment. Keep seeking those moments wherever you can find them. Have an amazing time at the cabin, Kaylynne. I feel as MJH does about tuning into small wonders. Nature experiences are healing to the soul.
Artist, mostly stable is not too bad, but maybe another treatment will work better on the ascites? Have you looked it up in Bestbird’s guide? (I haven’t yet.) I hate that you have this going on.
Kaption, darn. But good to get the biopsy, and hopefully that will suggest a good treatment for you.
MJH, are your liver aches getting better or worse?
Lol to us all discussing asparagus. I mean, I know we have a serious reason to, but still. I have avoided it for years and will continue to do so, but I won’t be cutting out other foods with known health benefits. (That’s just what seems best for me; not criticizing others.)
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Shetland Pony - Not sure about a law, but certainly a special place in hell. inocgnitomom - so glad you are out of there.
>Z<
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Shetland- kind of you to inquire. The liver pain is improving, which I hope means fulvestrant is working.
Best- MJH
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I can't believe Robin is in the Hospital, gonna check that thread soon, Z thanks so much.
Just today after i mentioned again about the URO that had her results for Bladder biopsy in his hands, and he held out till the end of the visit to tell her it's fine. SO i said u know i do wish Hell for him, she said Hell is getting really crowded with these people.
Artist hope you keep things stable.
Kaption i think we learn to say pretty good.
Dani is going through a rough patch. The bleeding is still present, sometimes more than other times. Today's tx was almost held back because all her #s are wacko. So far her platelets didn't rebound back much, I didn't see the BT yet, prob tomorrow, but e/t is low. She's been pretty much not doing any activities to due lack of energy and pain. A lot of pain in the bones. She could not even drive her DD to the doc because her arms are so weak she did not think she could handle the wheel.
So re: pain meds. I'll get to the bones thread also, but she cannot take the Anti inflammatory because there is concern for thinning the blood and she can't afford that with that condition. Tylenol doesn't do a thing for her. And the other stuff with codeine or stronger, she doesn't want to take, first because she says she has to be aware and make sure she goes to the bathroom in the middle of the night to make sure the little clots come out, and during the day she wants to be able to be available when the kids come home and do stuff in the house. I don't know. I don't know what to say, she has constant pain, they will finally do a MRI of the shoulder and the spine to see what's pressing where. I know for a fact that RO didn't do all she said she was gonna do. But in the meantime, she is pretty much just plopping down on the couch.
He took off the new added tx to the cocktail, no more Leukeran till they see the BT getting better. He wants to see if that made her have less energy. I think so. I called him in the AM and told him how weak she is. I can't imagine how bad she is feeling.
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Mom - I am huge fan of drugs to manage pain, but if pain is what it takes to get Dani to sit on the couch perhaps less pain killers is good. She is a ball of fire for sure.
Hugs and strength to you. I know you wish it was you in pain on the couch. It must hurt ten times more to watch dear Dani go through this.
>Z<
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My port continues to be a pain in the posterior. The works reliably for IV infusions but the RN's can't reliably pull blood out of it. This causes two problems. 1) I can't reliably use it for a blood draw. This is my primary use for the port. I am not on IV treatments at the moment. 2) Some facilities want to see the blood before they will do an IV. If that is the case, it will be useless for IV's as well and therefore totally useless. I've done some complementary "nutritional" IV's with the port; however, it's not clear I could get anyone to give me chemo unless they can demonstrate that the flow through the port is working in both directions.
Any experience with this? Headed to my cancer center tomorrow to flush it, again.
>Z<
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MJH glad you’re feeling better!
Artist. Sounds like stable - which is really good
Kaption i had 2 liver biopsies and they were easy. Hope yours is too!
Z I’m sorry I can’t help you with the port when I had mine I didn’t have any issues
I haven’t posted much lately but I do read the posts. I’ve been tired and trying to rest for when my dd comes in with the baby this Sunday for a week. I want to take care of him so she can rest. Today I had my Doxil and they did my TMs. My 15-3 went from 704-989. This is the highest ever and so scary. I’ll probably go back to Halaven.I get scans after my dd leaves on 2/21 and then the Y 90 on 3/2. I hope I’ll still be eligible for the procedure. To date all progression has been in my liver. My bone mets have been more Or less stable. I hope it hasn’t spread to another organ and that if there is profession in my liver as I’m now sure there is it won’t preclude me from the Y 90 Ugh !!!
Babs
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Momall. I’m so sorry dani is going through such a rough patch. Sending hugs and lots of prayers
Bab
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Z, we have to go through all sorts of things to get my port to work for a blood draw. They think a little flap has developed on the end that closes the port when they try to pull back blood. Things that work: laying back in recliner, standing, arm (on the same side where the port is ) over your head, coughing, laughing, turning head away. There is a drip infusion they can order to clear out any clots (I can’t remember recall the name right now), but yours is so new.
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MJH, it sounds promising that the pain is improving! A good sign.
Momall, sending love and support to you and Dani.
Zarovka, have they tried using port Draino? It dissolves stuff that is blocking the way. Maybe that is what Jen is talking about. Do you get it flushed every six weeks? You may need to have the IR take a look with, erm, whatever imaging they use for such investigations.
Babs, can you tell the IR what is going on and see if they can get you in for Y90 sooner?
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Shetland. I can’t get in earlier. Must get scan but can’t do that until the baby leaves. Plus due to work I must do a Friday so 3/2 it is unless I can move it up one week
Babs
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Zar i cant imagine that you are dealing with this stupid port since you had it put in. It's suppose to make your life easier but it's making you crazy. Maybe IR today could get a good look and DO something about it.
Babs gotta hold your strength for the little munchking coming your way. So sorry about the TM's, who knows could be it doesn't mean so much, wait till you see the scans.
Thank you so much for the good vibes from all. You guys are super super special.
It's very hard, she doesn't want to tell me when she's in pain, she's so angry that "her mother" has to see this. And yes, i have terrible back pain the last few days and i hesitate to take advil because i feel so guilty that i could feel better and she has to have the pain. Well it sounds silly but its the truth. What recommendation aside from Dilaudid or oxycodone can be offered? Babs what did you just take for your pains? She is plenty upset that Onco took her off from part of the tx, that's really too bad. TM's were done, i am afraid to see at what point it is.Z I see you bumped up the other thread, i'll post there.
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Momall. I was on dilaudun. Since I never take anything it worked great for me!
I hope you and Dani get relief and I know what you mean but pls take something for you!
Bab
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MJH-So glad your pain is better.
Grannax 2-Do you live in Oklahoma now? I agree that Tenkiller is the prettiest lake in OK.
Shetland Pony-Keytruda is next on the list.
Momall-So sorry Dani is in so much pain. I take tramadol or hydrocodone, but as of today neither work very well.
Z-I have the same issue with my power port. Even though they can't get a blood return, it flushes fine and I can receive my chemo. They have only been able to get blood once from my port. They sent me for a special test (I can't remember the name) to see if it was broken but it was fine. My nurse also talked about the skin growing over the flap as well.
Yesterday was my onc appointment. I've had way too much liver progression in the last few months. I asked her if I don't have any treatment at all, how much time do I have? She said, three months until your liver fails. BAM right in the face. It was heartbreaking to see my daughter's face when my onc told us that. I am starting Xeloda next week. My word for 2016 was Intuition and I have connected with that inner voice. Her words didn't really surprise me. My word this year is Believe and I am working on it. Love you all so much. You are beyond supportive and informative and help me so much on this journey.
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Kaylynne Keytruda could be the one. There is so many other tx that weren't on yet, why doesn't the doc dig deep in that magical bag and get going... Tramadol i think is just a fancy aspirin - she would take that but i don't think it's gonna do much for her either. Hydrocodone is great - but she wants to stay aware - ugh.
Babs did Dilaudid make you sleepy? Do you know the dosage? She took it a while ago, and it did. But maybe in a lower dose it doesn't?
Thanks
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I forgot to add that I am starting on Xeloda next week.
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Mom, how many milligrams of hydrocodone is Dani taking? Is it possible for her to have a reduced dose? Has Dani's MO talked to her about opiods and how they work? That whawha (sp), feeling that accompanies opiods will go away with frequent usage. The opiod receptors start to adjust to it and will compensate. With a smaller dosage Dani may get just enough relief without knocking her completely out or messing with her ability to function normally. One thing about opiods is that an increase may be necessary at some point in time. Everyone is a bit different as to when this begins to happen but for some it can be a very, very, long time. Perhaps a pain management specialist would be the perfect person to consult with. Different pain meds work better on different types of pain and a specialist might be just the ticket to help sort this all out.
I hope Dani finds relief soon. Many blessing to you and Dani on this day.
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NO1-2NV what you mention makes sense. Dani is so scared to be out of it, she is not really considering it. She is scheduled next week for an MRI so maybe if they see something and they think they could radiate she will feel better. That's my hope, although first her platelets are so low, now they are in the 70's and HGB 7.0 aside from all the wacko #s, so I'm just thinking they might not even run to do the rads. Onco for sure won't feel comfortable. And the other problem is that they pretty much radiated all T's and C's so they would either have to find a different pathway or... but thanks, will keep your recommendation in mind.
Kaylynne Xeloda did help a lot of ppl w liver mets, so it might just do the trick for you.
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Kaylynne - Xeloda is good drug. I am confident you will do well for a long time on Xeloda.
>Z<
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At momallthetime - I am newer here, just at my one year mark with liver mets, but I did have quite a bit of pain with chemo. Because I have 3 very young children (my youngest was 5 months at diagnosis) I did not want to be down for long. I defer to those more experienced, but one thing that helped me was cannibas oil tincture - either under my tongue or putting one drop onto a skittle? I am a religious and pretty straight laced person - so I didn't consider it at first, until educating myself on these boards. Now am glad I did this - improved sleep and was high functioning with my kids through the day and pain improved significantly.
I am always thinking of Dani and others here. You are an amazing support for her and all of us! Thanks to all
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and Kaylynne - I am also in Norman, Oklahoma and my oncologist is Charles Hollen in okc. Wishing you a long run on xeloda
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I live in Dallas metroplex but I am from OKC. I haven't lived in Oklahoma since my husband started getting transferred back in 1971. But both sides of our families still do, so we used to go there all the time. I do still claim that I'm an Okie.
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Kaylynne-Xeloda was my longest and best treatment to date. Wish it worked forever!
Momall-The dilaudin was just 2 mg I still worked and functioned fine.
Babs
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kaylynne - Wishing you a long run on Xeloda. Please continue to keep us posted. (((hugs)))
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Checking in on everyone. Z - thank you for the thread on Robin.
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hi all, I’ve been in hospital for a week with a liver abscess 6 x 5 cm, they initially thought tumor and was told really bad news but I am happy to report definitely an abscess and I have a drain working it’s magic.
Has anyone had an abscess in the liver before? Does anyone know the recovery time?
Sorry about your port z, that’s frustrating mine also doesn’t not give blood back but at least I use it for iv chemo
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nina27 I have not had a liver abscess but to had an abscess in my abdomen as a result of botched adrenalectmy. It did require a drain and long hospital stay with antibiotic. Then after I got home they had me on antibiotics at home for two months. Abscess can take a long to heal.
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Thanks Nina - The port works for drawing blood every time I go to the place that installed it, but nowhere else. At this point I am just hoping that with time it sorts itself out. It's still new.
>Z<
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Hello to my fellow okies, Grannax2 and Livebig! Tenkiller is beautiful even in the winter. From our picture window, we watched as two bald eagles flew along the coastline. We took a few nature walks in the freezing temps and it was exhilarating. I've never seen so many mallard ducks in one place.
I am still waiting to hear from the pharmacist to get started on Xeloda. I should hear something today.
Those of you who have had the Foundation One or Caris testing, how will this benefit me at this point in my progression? My oncologist isn't keen on it and will not order it. Is this something I do on my own? Also, I don't believe I have any tissue samples. Would I have to get another biopsy?
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Kaylynn my MO ordered it for me. But, I think Z got hers from Caris and paid for it herself. My ins paid, some don't. You never had a BX? You should get one. Your liver mets would be easy to BX. There's a lot that could be found out from that even if it didn't get sent to F1 or Caris. Having a recent BX is good, too in case it has mutated.
Genomic Alterations testing has confusing results sometimes. You don't change treatments based only on those results. In your case, absolutely I think you should push to have one and a liver BX. It just might give info that could make a huge difference in your treatment plan. Liver BX
is an easy procedure and it only takes two weeks for results to come back from F1.
Glad you enjoyed your weekend at the prettiest lake in Oklahoma.
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