How are people with liver mets doing?
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Shetland I am so sorry for what you are going through it sounds so scary and you sound so brave. (((hugs))) and keep us updated as much as you can .
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Shetland you definitely get the gold star for GRIT today. The pain sounds terrible. I had an abscess for a botched adrenalectomy years ago. It was really painful and took months of antibiotics. I had to access my pic line at home. I think the port would be harder. But, I got used to it. Now, if they would figure out why you have an abscess in your liver. Always something.💞
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Shetland- super crummy deal! But, the access certainly explains your intermittent fevers- you body has known about the abcess for awhile. I hope that the antibiotics are effective and you get the heck out of there. we know that if you already do not know how to knit- you will have to learn, and if you do already know how- you have got a lot of knitting to do- even if you own only a tiny pony this winter.
Cheers! Also- audible would be great distraction while tied to the bed.
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Shetland- So sorry you are going thru all this. Hugs to you tonight from across the miles. Get some rest.
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Shetland, I am so sorry to hear you are back in the hospital. I hope that the new antibiotic gets the abscess under control. Given the sharp pain, it does seem more likely it is an abscess than a tumor. I am praying things turn around for you very soon. It has been a tough few months. You must be missing dance so much.
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I do miss dancing. I missed a performance on the weekend which included the debut of a new dance.
That's an interesting comment, JFL, that the sharp pain sounds like an abscess. I have had pain when tumors stretch the liver capsule but this pain is different. Also, these things did not show on recent scans, and the pain has diminished since starting the new antibiotic. Still, the hospital doctor has ordered a biopsy. But nothing will be done until my own oncologist weighs in. One thing out of many that I dislike about the hospital (I hear you, Frisky!) is that any random doctor on duty can decide things about me and make orders. The other day I called to order a meal, and the kitchen staff told me my status had been changed to clear liquid only. What? I thought it must be a mistake but my nurse found out that the NP I talked to earlier that day had changed it without discussing it with me at all! Coward! I was taking down names and asking who could override this. My nurse got it reversed but by then it was too late to order dinner. However, when I had been unable to order my meal, I ordered a guest meal for my husband. And I'll take the fifth on what happened next.
About the fevers, Nkb, it is very strange. I think fever episode #1 may have been a stent infection; it was a week after placement and I did feel pain and swelling in that area. But episodes #2 and #3 happened two days after an eribulin infusion and no cause of infection was found. Nevertheless I had three hospital stays for those fevers. Now this time, we see a possible infection on the CT scan, but I have had no fever!
Grannax2, the reason for the abscess would be bacteria from the intestine using the stent as a road up to that place on my liver. So the infectious disease doctor chose the antibiotic based on the usual suspects. If I do get a biopsy she will have a culture to inform her choice.
Candy and Nicole, hugs received.
Oh, and about the knitting, I adore beautiful yarns and handmade things, but the thought of actually doing the knitting—it makes me weary. When I was little I used to tape doll clothes together because I did not want to stitch. Now listening to audible is something I could try. I have listened to a couple podcasts here in my cell.
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Shetland, Following along on all of this, though nothing useful to add. Hope it resolves quickly!!!
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Thank you, Cure-ious.
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ShetlandPony -
I am following along also. I am so sorry to hear of this most unpleasant episode. Hoping you are in the best place to get it all figured out...and quickly...I can only send you this comfort food of homemade strawberry ice cream...and I won't tell the NP/PA...
Gumdoctor
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You enjoy that to the fullest Gumdoc!!!! I am JEALOUS!!!!!
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Shetland- Sorry to hear about these challenges. Wishing you well and back at home verysoon!
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Shetland I'm so sorry about what you are going through. Hugs
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When I had to be on long term antibiotics they came in these big balls that had to be kept in the refrigerator. I found a smock with big pockets and went everywhere while the drugs were going in. No gravity needed with the balls at home. Maybe you won't have to knit. LOL
That ice cream reminds me of my teenage years. My mom always made it.
My latest trauma was getting a letter from a debt collector on Saturday. $105,000. WHAT?!?! My doctor's office is checking into it for me. It's from the hospital where I had my y90s. It went bankrupt shortly after my procedures in April and May of 2017. My IR office says that they got pre authorization. I never got a bill from them. Plus they went bankrupt. They are getting proof from my insurance company that it was paid in full by Medicare and my supplement. I'm sure I have papers somewhere from Medicare. Finding them is another story. Hopefully, it will all be resolved today. Otherwise, I'm going to have a complete meltdown.
I think I'll have ice cream for lunch. 💞
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Grannax - Ugh on the bill. If you can’t find your hard copy of Medicare payment, you can set up an online account at www.mymedicare.gov and it should show past payments by Medicare. I requested to stop getting hard copies myself. Less trash :-) Good luck. Hope they figure it out soon for tou
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hi katty, I am so sorry for all that terrible pain and being exposed to unknown... hope you feel better soon. Tomorrow might be a better day.lots of love💗
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Grannax -
So sorry for this bill...hoping and praying it all works out.
Gumdoctor
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Shetland....what’s going on? How are you? did they figured out what was causing the infection? Are you still at the hospital? Thinking about you and hoping you’re feeling better...
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I’ve been here in the hospital five days. I just want to go home. I’m lonely. I have had some visitors but the hospital is rather far from my home. A CT found what appears to be an abscess on my liver; that is what caused the pain.There was some confusion about draining (too small) vs biopsy. This morning I thought I would go home, but later they came and told me I would stay and have a biopsy to see if there is cancer there or just infection, and if we get enough it will help the infectious disease specialist and maybe my onc to plan the best therapy. I am to be on IV antibiotics at home for four weeks, and no chemo. Apparently the bile duct stent can act as a highway for bacteria from the intestine. My onc thinks it may have settled in a tumor scar/debris. The infectious disease specialist chose a different antibiotic than I had gotten the previous three hospitalizations for fever. She was in agreement with my desire to avoid certain ones with scary possible side effects. Once I started that, the pain improved quickly. My onc gave me to understand that infection is more dangerous to me than cancer right now. I am nervous as I do not want to be one of those people who had to go off chemo and then the cancer got away. I will try to use the break to rebuild my stamina and be as healthy as possible.
Thank you all so much for the encouraging words. Gumdoctor that is a beautiful strawberry ice cream photo. Grannax2, try not to stress over the bogus bill. It will get ironed out. What a pain.
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may the antibiotics continue to swiftly work to resolve the problem, so you can go home and resume your treatment. Big hug
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Shetland, I can see it being lonely in the hospital. So much time there and nothing to do but sleep and hope for improvement. I’m hoping for the antibiotics to do their work for you and your team to get a handle on the infection cause. Hugs to you.
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ShetlandPony,
So grateful to hear they found the problem. The unknown enemy is much more dangerous than the known. Now you and your medical team can conquer this enemy.
Your loneliness will subside soon when you are home, closer to your family and friends. In the blink of an eye.
Sending you more food love with these virtual chocolate chip cookies lovingly made by my Prince Charming.
If I could come visit you, I would vring you the real ones.
Sending much healing love to you,
Gumdoctor
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ShetlandPony -
If you want to private message me your telephone number, I would love to call you and talk with you....if you are up to it...
Gumdoctor
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Shetland, sending positive vibes that the liver biopsy goes well and they get enough tissue to answer all their questions. Even close to home, hospitals are lonely places. Too much time to think about the what-ifs. It sounds like you'll be headed home in a couple of days with an action plan in place. Spending off-chemo time gaining strength is a great idea. Hugs ~ JL
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ShetlandPony, hope the biopsy goes well and your abscess heals. Yes, I was in the hospital for 6 days and I know how lonely it can be. I hope you can go home soon, eat healthy food and get back your energy.
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Shetland I am thinking of you and hoping all starts going better now that they have identified the problem and have getting a good plan in place. I know it is hard to be in the hospital and hope you will be going home soon.
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Hi Shetland. I guess it is a good thing that they are keeping you where they can monitor you. Just sad you are alone and missing your life. Hopefully, you are off that restrictive diet and maybe your DH can sneak in treats.
Can you at least catch up on your favorite Netflix or Amazon prime shows? Poldark is my latest on Amazon prime. Just need a Kindle, current, earphones and hospital wifi..
Always thinking of you my liver metser friend.
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Shetland- Just popping in to say HI. 5pm here. Hope you are having a good supper meal and can get a good nights sleep tonight. Maybe home tomorrow????? Hope so.
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cross posting.
I didnt tell you all but had a feeling my treatment stopped working due to my itching skin condition coming back and pain on my liver. My MO ordered a MRI I went today.
Ibrance has failed me. All my 3 tunors have grown and there is a new lesion. I have to now get a PET and see what treatment.
My husband and I are devestated and I am not gonna lie I am thinking I wont even make it 2 years. I'm gonna go bc I am sobbing.
Thanks for listening.
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hugs , nicol. Likely there is something for you , wishing you to find it.
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Hi NicoleRod. Please keep us posted. Does your MO think it was your Ibrance or your Letrozole that failed you? Do you think you will try a SERD next, like Faslodex? Or Xeloda to get those liver bad guys?
I have been on these boards for a while and what I have seen is that when treatment fails sooner than expected, the next one can be your long time charm. You might have to search the treatment topics and look at the poster's tx history. Maybe others will chime in to tell you their story.
You will be here a long time..you just need to find the tx that works for you. I can't remember, but was F1 done and were any targeted mutations found? There are other targeted therapies, like Afinitor and the new Piqray.
If chemo is decided, it is not the end of the world. I did it.
Cry and rejoin us when you are ready.
S
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