How are people with liver mets doing?
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sounds like thrush to me. Call the doctor. Get or make magic mouthwash. Hopefully you can get it resolved quickly.
Best wishe
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I spoke to the doctor on call...she said to use the NYSTATIN Rinse 4 x day (I just got it today) and asked how many difulcan pills I have...I said 5....she said take 1 exery other day..... if it gets to where I cannot eat...I will have to go to hospital for IV meds...
. We are leaving for TN tomorrow morning for a trip for a week....I can't stop crying...I cannot believe this is happening....0 -
Nicole- I’m not trying to tell you what’s the right thing to do BUT If I felt good other than the thrush, I would take the meds and go on the trip. You may recover and enjoy. If not- they have great hospitals in TN.
Hoping you recover quickl!
Dee
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I have also been running a fever low grade under 102 for the past 4 days.. I told my MO this the other day she said that can happen with chemo for like 4 days but now its 5.... I am wondering if its the ivermectin it does say that can be a side effect (fever).....
The doctor on call that called me before said the thrush is most definitely from the chemo even if I didn't get it last time on this chemo.....
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Nicole, sorry you are having such a rough time. In a way, if you physically can travel, a trip would help but hopefully not by air. I’d worry about exposure to all kinds of infections. A car trip sounds wonderful!
A question for anyone who has had fluid buildup in the upper abdomen area- did it resolve with diuretics or did it have to be drained? I have such a bloated feeling. My MO has prescribed diuretics and I am hoping the fluid retention will be resolved with these tabs.
Any advice about dealing with this upper abdomen bloating? This is new for me and definitely not comfortable! Getting the fluid drained seems like a lengthy procedure and hospitalization.
Please share your experience and what helped with fluid build up.
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Nicole. My docs unusually say 100.5fever call the doc. How long will be gone on your trip? Maybe your doc will just call in an antibiotic for you. I hope you get to go.
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ablation done today to see if I can get my anemia under control. Treatment with kadcyla Wednesday, brain MRI Saturday. What a week I am m going to have. next month s body ZpEY scan to check on liver snd tumor in chest.
it never ends but I’m hopeful for stable.0 -
Good luck this week, LFF! I'm rooting for stable!
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LFF- I am standing in support and hoping for a great report! 🦋
Dee
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Good luck, LFF. I’m sure you’ll be glad to get that bunch of stuff over with. And I’m definitely pulling for good results for you! 🤞🤞
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Good luck LFF! Now for us... Sandra's pelvis, abdomen and chest CT came absolutely clear, nothing noTHING NOTHING of disease is seen! World calls people NED after such scans. So now my question is - what the heck is that little wound (which is not getting worse, maybe even little improving) in the mastectomy scar (would CT miss if it were cancerous?)?. I am still convinced this is some infection but doubts never leave me...
am I digging too deep? Uh...Saulius
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Fingers crossed for you LFF.
BSandra wow so pleased fo you. NED, enjoy the moment!!
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Saulius, what wonderful uplifting news! I am so happy for you and Sandra! I know that you are keeping a watchful eye on possible infection, but please breathe a sigh of relief and enjoy the rest of your week! Whew!
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didn’t get to do chemo on Monday bc they said my counts were dropping and they’d significantly shorten my life. They said it was up to me but I could see it in everyone’s faces they thought it was wrong.
They feel ibrance will take too long to kick in but I think I’m still going to try and convince them. They did say the door isn’t totally closed on treatment but they feel it’s unlikely that I’ll get into a safe place. I’m hoping a few weeks healing at home will be the healing I need to Atleast get to the point of trying. If it wasn’t for the blood clot in my portal vein things wouldn’t be so difficult. I’m so mad though. 2 lines of treatment and thats all there is for me ? So many drugs to try and my body is that complicated ? I wish , as usual, that they would have hopped on investigations when my liver enzymes started going up for no apparent reason. Then the clot wouldn’t have become so big. Maybe things would be different. Send all the healing vibes. I want another Christmas with my son. I’m not ready to die
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BAP- 😢. Your situation is scary, but keep believing in yourself that you will make it. I'm hoping they agree on a treatment that will turn things around quickly and that your body can handle. Your feelings are real and difficult and tender. I care. Big hugs
Saulius- NED!!! 💃🏻Happy Dance. Healing of wounds can take longer when you have been ontreatment. Can you see a wound specialist to get some peace of mind?
Dee
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B-A-P, oh no, sorry your chemo didn't go ahead, Such a difficult position to be in.
Are you eating well? this must be so emotionally taxing. How are you physically? Is your fam able to visit?
sending you strength & good energy to get you improving enough for chemo
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BAP - hoping they find something for you that you tolerate and beats back the cancer.
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for the most part I’m able to eat. When my belly fills with ascites it is a lot harder but once I’m discharged they will do drains weekly. And usually I can usually get more in. They may consider a permanent drain but they worry about infection. It would be a lot more convenient and comfortable though if you ask me . Days before the week is up, I’m full again. That’s more to do with the blood clot in my portal vein. They don’t think it to be malignant ascites. The chemo they had given me a dose of already worked beautifully and then I ended up with varacies bleeds so they’ve been nervous even though the bleeds are taken care of and there’s no more infection. But they are concerned about the clot and won’t be sending me home with thinners bc my counts are just all over.
I did ask again if they would consider ibrance again just to try even if they think it won’t do anything quickly enough. I really just rather try and see if it can halt things even if it doesn’t necessarily shrink things fast enough. I don’t know. We know treatment isn’t off the table but I need to prove to them I can do it. So I just gotta get my body to cooperate with me . hoping to go home this weekend. I’ll need assistance and things will look a lot different but atleast it’s a familiar place .
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BAP, have you read up about enobosarm? It is still experimental for cancer patients, but the good part is that it strengthens the body instead of weakening it.
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husband ,
I can ask but my money is betting on that we don't have that drug access in NL
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BAP, are you in New Zealand, or Newfoundland?
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BAP, so sorry you are going through all this. I'm not in your place but understand the challenges of one's body not cooperating. My blood/bone marrow doesn't play nice with chemo (or Ibrance for that matter). Hopefully you can recover a bit and they will find a treatment that works for you.
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Husband - Newfoundland !
Ibrance is back on the table. They changed their minds thinking it might be a good idea. We are still waiting for my markers to come back in. She just said if I choose that route over over chemo , I have to commit to it and realize that if it fails , bc I am so sick , I might miss the window where chemo would work. I think she meant I wouldnt be able to start chemo right away due to needing to washout the other drugs.
We will reevaluate my whole situation in 2 weeks and if they think chemo is still far too dangerous then we will go the ibrance way even though it has its own risks. Mind you I still have a clot I'm currently unable to treat with thinners. So every day is a risky one. But I'm trying to be cautiously optimistic that I'll be able to try atleast something. They've changed their minds a thousand times already but today ended good.
So I'll take what I can get for now
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Saulius great news! BAP hang in there and you are right to keep your team exploring the options…. But that’s hard work and very tiring indeed.
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dear bap, i wanna tell you what happened today. the nhs hospital we use is a small city hospital, not many oncology patients. it was our consultation day, seen the onc, talked about ascites, drainage, xeloda dosages etc. pretty standard stuff. our oncologist is a professor, he is head of cancer research for the south of england. he has many published papers. you get the idea. one thing lead to another and my mrs asked what is next when xeloda fails. he said im not a big fan of dropping xeloda completely, he said we might move to iv chemo, mix and match things. he also said there was this lady who he saw in 2003 (18 years ago), came in in a terrible shape. her liver was about to fail, v frail, malnourished, dehydrated, mets in her liver, lungs, bone marrow and abdominal cavity. he said he had no option but to give her low dose chemo as she couldnt handle anything else. she pulled through and is still with us, he said he sees her once every three weeks and she is still on low dose chemo. i though this was a great anecdote and worth sharing. good luck.
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wow nixie thank you so much for sharing. That is definitely uplifting and hopeful. I’ve been surprising them in a lot of ways which is why they haven’t yet given up on me. I was told twice I was dying and turned it around. Was told no more treatment but now we are back to the drawing table. thank you
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hello, I don't post here often. And actually have never posted on the liver thread before but I recently had more progression in my liver and my oncologist is going to switch my from Piqray to an IV chemo Carboplatin by itself… my question is, is anyone familiar with or received Carboplatin as a single therapy? I was always under the impression it was paired with another chemo. any insight would be great! (I tried searching the boards and didn't come up with much)
Saulius - I read your posts about the spot on the mastectomy scar. I had a recurrence on my mastectomy scar. It never showed up on scans. A dermatologist ended up taking a punch biopsy to get an answer. I also had a different suspicious spot on my scar open up to “spit out" a stitch. My surgeon said it can happen years later. Old stitches that don't/ didn't dissolve and your body eventually pushes it out. Hope you get to the bottom of it! Just sharing personal experiences.
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Dear Casun19, tanks a lot. For me it really looks like a wound/opening (aligns with stitch explaining) with some infection cleaning itself more than recurrence but we'll see a surgeon-dermatologist next Wednesday.
Now here's a bummer: CT sees nothing. NOTHING! But ultrasound guy (yesterday) sees increase in 3 not resected (they were too small or surgeon did not reach them) lymph nodes, up to 5 mm now (two months ago they were up to 3 mm). He wrote down ,,stable disease, control in 3 months". I know he's right according to numbers but we don't want to wait any 3 months. Something has to be done. Crap... it is always something!:/
Saulius
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Dear BAP, hang on. It is great you have options and were able to persuade them. Please, could you find more people, like friends, who could help you out with daily things, so that you could recuperate quickly, and then jump on Ibrance. Ah, wish you luck. We are fighters, we never loose hope and do what we have to do! Saulius
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