How are people with liver mets doing?
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Ok ladies..so my bilirubin always is a little high... like 1.5 1.9 ....this past week 2.4...and now my "Direct" bilirubin which is usually 0.4 to 0.6.... is now 0.8... I am thinking there is a new tumor and its in the bile duct...probably still very tiny...but does anyone have experience or know anything about tumors in the duct? Can they be dealt with? I only know (personally) one person that had one there and she died after they removed it.
Since I heavent had a treatment work yet in a year...I believe my cancer is now taking a turn for faster growth/spread. Especially since I have had consistently, pain there. My scans are next week but I wont have results till the 16th.0 -
nicololerod. Shetland pony had some issues with her duct. It turned out not to be a tumor. She also had a stint to help with the blockage in her bile duct. I hope she responds to you because I'm leaving out a lot of details that would be helpful to you.💞
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I am going to PM her..thank you Gran!
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I have good news - 16 weeks after starting the clinical trial of atezolizumab + taxol + ipatasertib/placebo, my CT indicates shrinkage & overall reduction in tumor load. My necrotic lung met is shrinking (no cough anymore) and all the liver mets except 1 shrank, incl a big one which showed a significant reduction. One smaller unfortunately grew a bit but overall when everything got added up, I've got shrinkage.
My blood values also indicate the liver is healthier and I certainly feel better right now.
So we keep on & keep hoping 😊
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Moth,
Great news! As you said, keep on going!!!!
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Moth, so happy for your good results. We are all watching this trial. Yay!
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Awesome news Moth.!!! Happy for you!
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moth- Wonderful, good news!! Happy for ya. Celebrate!!!!
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Moth - fantastic news!!! How are the side effects for you?
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moth - I meant to ask, what was your PD-L1 positivity? Was it through Foundation 1 or did they test you prior to study?
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went in today to get another Byblos transfusion. I still wasn’t feeling great and was having a hard time keeping up with my kids. Turns out my hemoglobin dropped from. 7.4 to 6.6 in one day and I’ve developed antibodies which made it impossible to match me today. I have to go back tomorrow for not 1 bag but 2.
I gotta get this figured out. I’ve lost about 30 lbs in a month and can’t live with this level of fatigue. I also go to the GI doctor tomorrow. I’m sure I will end up making an appointment for a scope.
Sorry but I’m very frustrated now. Hoping to feel better soon and find a way to decrease my severe anemia.
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LFF,
Hope they can figure out something tomorrow. Hope you feel better soon. Thinking good thoughts.
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LeftFoot...no apologies are necessary. I will increase my prayers for you and send a virtual hug for you and your kids.
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HopeandGratitude - it's a 28 day cycle and I've finished 4. Round 3 was awful in terms of fatigue and joint and muscle pain and almost constant high fevers, and crashing Hgb. I was essentially bedbound & i spent a fair bit of time crying that cycle. But it's hard to say what is the treatment, what is my liver being a jerk. Round 4 was pretty good, I feel comparatively a lot stronger now though I still have crashing fatigue and need naps and mostly I'm a layabout. It's 3 drugs which all list fatigue as one of top SEs so I guess it's not a surprise.
Re the pd-l1 test - my MO tested it in a lab here and the clinical trial also ran their own. I was told there is essentially 1 major lab assay that everyone uses for it so once we had our local results the MO was sure that theirs would match & it did. I believe the trial also does foundation 1 because I vaguely remember something about it being on the consent, but we don't get the results. Or maybe we do when we leave the trial. I know that if I progress the trial will do fresh genetic testing on the tumor and will give us those results.
LFF - hope you get relief soon. That all sounds horrible & exhausting 🤗
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Leftfootforward, oh no. Did you tell your doctor what you have told us, that this must be figured out? Let your doctors talk to each other, call on any other specialists they can, and figure out how to help you. I hope you don't have to work too hard advocating for yourself in this state. Sending lots of good wishes that you will feel much better very soon.
Nicole, thank you for the PM. I will answer here. Why do you think there is cancer in your bile duct? With me, they never did get any biopsy or brushing proof, but my onc believes there was sneaky ILC in or next to the bile duct. My saga is on a thread called “Bile duct stricture could be ILC mets".
https://community.breastcancer.org/forum/8/topics/872398?page=1
Also, I read you are itchy. Are you getting jaundiced? My jaundice itched like crazy. I was all bruised from scratching even though I tried not to scratch.
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Lff, nothing to be sorry about. You've been thru a lot and of course you're frustrated; vent away! Sending big hugs & best wishes this gets figured out and you feel better soon.
Moth, yay for shrinkage!! Congratulations!
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Yes indeed, moth. I’m so glad to hear there has been shrinkage of tumors and that your cough is gone. What a relief that must be. I hope you can relax a bit more now and trust that the drugs are working.
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LFF - so very sorry to hear how awful this anemia is. You must be exhausted and frustrated. Can you push your MO to work with other docs to get this figured out? Don’t want you suffering so much. Sending prayers
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Moth -I hope continued rounds get easier and easier and QOL continues to improve! I always wonder with 3 drug regimens. Happy you are getting positive results. I have not been on a trial so I wondered if they gave you results to let you know you qualified. Stay strong! Sending prayers.
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Shetland. No I am not jaundice at all. I have had an On and Off itchy skin condition that looks like "Bites" (many here have heard about it) I had it a year before I was diagnosed Stage 4. I saw 6 dermatologists and I swore I had scabies LOL but after 4-6 skin biopsies and my husband never itching..they knew it wasn't something contagious or scabies. The most recent 2 Dermatologists feel it is either 1. From my cancer which can happen to some people, its just their bodies way of reacting with a hypersensitivity to the cancer. or 2. From too much Gluten...not a gluten intolerance, but a Gluten sensitivity.But I took the test they do for that condition (Dermatitis Heproformis) but it had come back negative. Although my new Dermatologist feels it still could be that Derma. Hep.condition. They literally look like bites..and have always mostly been on my elbows and knees but now have gone to ankles as well. They literally look like bites. Anyway...the reason I think it could be a blockage or should I say new tumor is because I have Gilberts Syndrome...that is when for no reason your Bilirubin runs high...but its mostly the regular Bilirubin and the IN DIRECT bilirubin that will run high with Gilberts. However, now this past week not only my regular Bilirubin but my DIRECT is high now. When DIRECT bilirubin is high it is generally or usually indicative of a blockage or tumor etc. My MO even confirmed today that when DIRECT is high that "usually" the assumption however she is not convinced there is a tumor there yet bc it is still the IN Direct that is running higher - hence Gilberts. I think it's possible to be a new tumor because I have been having consistent NOT severe but just more frequent pain in the liver in both spots..> Where the tumors are near the colon wall ...pain being down by just below the bottom rib and now also periodically up high behind rib cage where my cryoblation had been done back in Oct 2019... this leads me to believe things are growing.
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Leftfootforward, I have anemia for a long time, but last December started going down. So when it reached 7.0 in early February ( before transfusion started HGB was 6.7) Onc sent me to hospital for transfusion. It boosted HGB to over 10, but continue to decrease thereafter. And at 7.3 as of two days ago She didn’t want to place me in hospital when Covid is running. She gave me Procrit weekly shots. Waiting to see if Procrit can bring up HGB. or at least to keep HGB not going down. Ask your Onc for shots.
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thank you Cling.
My HBG went from 7.7 to 7 to 6.6 in just over 24 hours and just 2 weeks after a transfusion. I will definitely ask about the shoots.They are testing me for hemolytic anemia. GI doc I saw today does not think I have GI bleeding. I agree with him.
I will find out tomorrow results of test and I will get some iron. I might get another bag of blood for transfusion depending on results.
Thank you for your input.
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LFF - my MO believes my low Hgb is due entirely to liver tumors. I had a standing order for 2 bags q 14 days
We went to q 21 days when my my mets started shrinking. I'd just become resigned to transfusions but my Hgb improved when the mets started shrinking. I'm hovering at 100 & I haven't had a transfusion in almost 4 wks now
So anyway, this is a sucky possibility but it has to be considered that it may be a symptom of liver probs
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moth- thank you
I had a CT scan from the neck down June 23rd and I had no new spots and tge rest are stable. I will keep your kind words in mind however as cancer is sneaky and can hide.Thank you again
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LFF - Oh phew, thats good news woth recent scans. Just throwing this out too - was b 12 tested? Also D? D has some effect on erythropoeisis as well. Hope you find your solution soon and it's an easy fix
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admitted to hospital with suspected hemolytic anemia. Drs. Think it’s from new medication. I am hoping they are wrong. It has done its job and I will fight to stay on it.
Thank you everyone for your support.
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LFF - fingers crossed for you. Gentle hugs
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Rooting for you, Leftfootforward.
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Leftfootforward, I hope your medical team gets to the bottom of the issue you are having and that it is resolved quickly. We are all thinking of you and pulling for you.
Hugs and prayers from, Lynne
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Leftfootforward- Thinking of you. My mom developed hemolytic anemia from some medicine years ago. Was hospitalized, got transfusions, and of course stopped med. Scary.
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