How are people with liver mets doing?
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Shetland- Another Woohoo to you. (Posted in another thread also.)
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Shetland. Happy Dance for you, too.
I have some stressful news today. My daughter has the symptoms of COVID. She called her doc, she told her she thinks she has it. So, she said isolate and call if anything gets worse. Her doc is my PCP, too. She told my daughter not to do any errands for me anymore.
Her doc did not want her to go get tested so maybe there's a chance she doesn't really have it. The other bad part is that she was with me when she was exposed. She took me to the hospital for my PET then we went by Kroger to get my RX and eggs. I stayed in the car and she ran in the store. The store was over packed and some coughing. That was on Friday. She thinks that where she got it. I'm heart sick about it. I feel bad that she was trying to help me when she got it. She said Mom it's better for me to have instead of you. I said No, that's not how mothers think. She does not have children, she's 48.
Please pray for her and her husband. Thanks 💞
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grannex- I am hoping your daughter is ok. I am sorry tthat you both have to live through this. If she does have the virus, may she feel better soon. I am sorry that it makes your life harder.,wish we could help out.
Take care everyone.
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Grannax- So sorry to hear about your daughter. This is so hard. No one I know personally has it yet. Scary.
Does anyone ever have discomfort in the liver region? My tumor is around 1.5cm (down from 8 cm at diagnosis) and does not light up on PET anymore (on Nov PET scan). So I am "stable" I guess. But every once in a while I have discomfort under the ribcage on the right side. Past couple of days it has bothered me. Under ribcage on right side- front and back. I am thinking about other possibilities for the discomfort---no constipation, took prune juice Tues and had GOOD results and today Thurs had more good results--TMI. Not doing anything that could have pulled a muscle in that area. I do have bone mets to thoracic spine also. Just a worry. Last CT scan was Feb, next in May. Probably ok, but just gets you to thinking, you know.
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Candy, I am experiencing the exact same liver discomfort in the same area as you. This is brand new, never experienced any pain like this before. I have two small (less than 1cm each) liver mets. Also thoracic mets. I'm getting labs tomorrow and will pay attention to the liver registers, especially bilirubin, and take it from there. Kinda scary.
Grannax, sending prayers to your DD and her hubby.
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Jaylea- Mine comes and goes usually, but the last couple of days has been there more. Like, if you take your right hand and cup your ribcage on the right. Just under bra. Back and front. Feels like a catch. I have monthly labs next Tues (if they let me come in to do them) and supposed to see MO (? if will still do appt). I have had this before and labs for liver enzymes have always been good. But, hey, liver enzymes normal with the 8 cm tumor too, so what can you say. I have mentioned to MO before in appts past and she didn't seem concerned. Then routine scans all good. Who knows. Keep me informed of what you find out.
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candy-678 and Jaylea: I too have discomfort in the liver area, just under the ribs. But I also have discomfort in the sternum. I was freaking out that I was developing bone mets. My Pet scan did not find anything amiss, I had X-rays for other potential problems and was diagnosed (mostly a guess since there are no ways to tell for sure) that I have a form of chronic costochondritis or osteo-arthritis in the ribs at the sternum. Sometimes the discomfort radiates into my back. So I don't know if my mind/body is reading it as liver or ribs. Yeah, my enzymes are fine too and my blood work shows only a very small elevation over what is normal range in my alkaline phosphate readings. How old are you? You don't have to be old like me to have costo-chondritis. (I am spelling that incorrectly I am sure)
Grannax: I hope your daughter does well and her husband remains healthy and unaffected. All this *&^$# really sucks.
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Hi. I have had the right side under rib cage ache for 3 1/2 years. It comes and goes.
My MO has yet to guess what it is, but since my liver mets have been stable via scans and labs, we both decided it was from my large intestine..where the right angle turn is from the ascending to transverse colon.
It is just a guess..an unsolved mystery. But sometimes I think that gas producing Ibrance is the culprit.
But if your right side ache is new and or painful ALWAYS bring it to the attention of your MO.
S
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Elderberry- I am 49 years old. I do have rheumatoid arthritis.
Sandi- I guess it could be GI- gas or stool in the large intestine. Just seems weird that if it is GI it hurts below bra line in the ribs. Seems kind of high for bowel issues.
Never noticed it before the liver mets diagnosis. I will continue to monitor it. Also, strange that we all have felt it before and we all have liver mets.
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Candy...what is your Bilirubin and ALT and AST??
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Nicole- All normal. Bili total- 0.3, range 0.2-1.2 ALT-24, range 5-55 AST- 21, range 5-34 these are results from last months blood draw. Always been normal even with 8 centimeter liver lesion at diagnosis. Bili total 0.2 ALT 16 and AST 16 on labs at diagnosis. I have patient portal so I can scroll back to any date and see labs.
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Candy,
Thanks for your post on the Ibrance thread about my continued jump in tumor markers. I do think I'm going to ask my MO about PET. I think they avoid those at my cancer center because they don't want to argue with insurers (in this case, it's arguing with the federal government because I'm on Medicare). My last PET, though, was in May 2019, so I'm wondering if that makes a difference in them ordering one.
When you were first diagnosed (with the 8 cm tumor), were your tumor markers elevated? What tumor marker(s) did they take? My doc uses CA27-29 and CEA. I asked her why the CEA and she said it's because it can pick up on liver changes -- but -- I just had an MRI of my liver on March 5, and this test was taken on the 24th. How the heck could something go on that fast -- I mean, I guess it could, but I have lobular, which is a much sleepier cancer.
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BevJen- My TM's are CA 15.3 and CA 27.29. Why those and not CEA, I don't know. I had another MO at diagnosis. He moved. This MO just continued to do the same TM"s. The CA 15.3 was 39.4 and the CA 27.29 was 49 at diagnosis. They fluctuate each month. The lowest CA 15.3 was 35.7 (June 2018) and the highest was 43 (Oct 2019 & Jan 2020). The lowest CA 27.29 was 35.7 (Jan 2018) and the highest was 58.9 (Sept 2019). I keep a spreadsheet of the results. So last fall with the question of progression on the CT the CA 15.3 was 43 and the CA 27.29 was 58.9. After the normal PET in Nov 2019, my MO said my TM's are unreliable and changed them from monthly to every other month. ??? I don't know, she is the doc.
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Candy,
Thanks for the info. I'd love to have your TMs right now -- my CA27-29 is at 279. I was down to 180 in December, but ever since then, and after a stomach virus, and then another upper respiratory virus, they've been climbing each month. They are surely stress inducing -- I hate looking at them, especially because everything else in my bloodwork is perfect. I've even gotten my glucose down because I now take metformin and berberine.
Okay, hang in there. Also, I loved your story on the other thread about everyone being out and about in your little town. We live in a DC suburb, and there are a lot of crazies here, too. One of our neighbors, who really is a people person, goes to Costco, of all places, every morning to get one or two things "that he might run out of." We told him to stay put, but he keeps going. People are strange. Like you, I'm scared to death of this virus and so I'm staying in.
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BevJen- Yeah maybe my TM's are not accurate for me. An 8 cm tumor and numbers below 100. Scary though. All labs normal and no sick feeling and I had a baseball size tumor growing on my liver !!!!
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BevJen, I will chime in with my own experience with tumor markers just to give you more data points or food for thought. In general CA 27.29 has been very accurate for me. It was quite high at mets diagnosis, though my liver numbers were all in normal range. I had regular PET-CTs for quite a while, and we learned that for me the markers preceded the scans. In other words, they warned of progression before it showed up on the scan. (The one exception has been a few months ago when CA 27.29 did not rise as I would have expected when one tumor grew, and was seen on CT.) When I started Ibrance I was NEAD from Taxol and CA 27.29 was in the teens. It stayed there the first year of Ibrance + letrozole. Then over the next year it did a slow climb until eventually it got out of normal and finally a scan showed progression. An oncologist told me that it was a typical Ibrance fail, that it tends to go slowly like that. For me the trend is important. “Normal range” is not as meaningful. What scan modality have you used since your PET a year ago?
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Hi, SP,
Well, we might follow the same pattern, although I can't tell you when my CA 27-29 was in the teens -- I don't think ever since I started having this done in 2006.
Since that PET in May 2019, I've had several liver/abdominal MRIs (which seem to show most on me) and CT scans with contrast. I've asked for PET scans, but my MO insists that my insurance (which is Medicare) won't pay for them. I think some of us have talked about this before in this thread and others.
The thing is, I would trust my MRIs more than anything, because I get them at Hopkins and they are read by a TON of people. The "regular" radiologists read them -- there are always two there -- one must be a fellow under guidance of a more experienced person. Then, my interventional radiologist's fellow reads them, and finally my IR reads them. So there are a lot of eyes on them, and they also look at both my liver (why I primarily have them as a followup to microwave ablation) and also at whatever bone stuff shows up within that abdominal region. As far as I know, those are the only places where I've had anything going on.
I wrote to my MO and asked her to add Celebrex for the next month, since she wants to see what happens in a month. This is something that Cure-ious has suggested a number of times on the boards, so we'll see if the MO goes along with it.
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i have had this on and off since diagnosis of liver mets and starting treatment. Seemed worse on ibrance and less on verzenio. Docs could not find good reason for it. First I thought it had to be the Mets but now wondering if related to meds.
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HopeandGratitude,
You mean that you've had these ups and downs with tumor markers? Did you ever figure out a pattern? Did your scans ever substantiate the variability? Why did they switch you to Verzenio -- was it because of this?
Thanks.
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Hi all! Had another tough week...like history repeats itself. I’ve been in the hospital since Tuesday and being released tomorrow. Yay! I went in Tuesday for my 2nd Halaven treatment. I didn’t have it with febrile neutropenia and high temp of 103.2. Felt horrible; worse abdominal pain, bad swelling of hips, legs and feet, yellow skin, whites of eyes a nice yellow green. I had symptoms of covid-19 and I was tested for that but thankfully negative. Nasal swab was not pleasant but not the worst pain.
I had signs of infection. And had rushed ERCP Wednesday and a new plastic bile duct stent replaced my metal one. I though the metal one was never coming out. The liver tumor was wrapping itself around the metal stent. Ct scans and ultrasound couldn’t positively identify it was still there. Bile duct and stent full of pus, infection, sludge and yuck. I’m feeling better at least. Horrible mouth sores (worst so far), coughing phlegm, etc. The hospital is not the place I want to be anywhere near right now. I have a private room which has been so nice. I will have replacement stent on May 8 or at least visit with GI doctor.
Had the “talk” with my MO on March 17. Halaven May be my last treatment. Thanks for listening. I don’t post much but I always follow the threads.
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bbpie - I don't post much either but read daily. You have been through so much this week and yet sound positive and strong. You must have been scared having to be tested for Covid19 and so relieved it's negative. Truly an inspiration and I hope that you get stronger as you recover at home. You're right the hospital is last place you want to be these days. I had the last of my final treatment last week, nothing has worked since diagnosis and I am pulled off chemo. But I truly hope that Halaven is the answer for you and works for a very long time. You're positivity will take you so much further then where we are now.
Candy-678 - I have had liver pain since the beginning, sometimes the pains where dramatic pain crises, which were liver capsule stretching, my doctor's have given many different causes for the different pains over the past year including constipation. The liver itself does not have nerve endings and therefore the liver doesn't cause pain, but the liver capsule, diaphragm and all other areas surrounding the liver do and referred pain can be very difficult to follow. I agree, any new pain must be investigated. All the best. Maureen
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I have good news about my daughter. She has no fever and some of her symptoms are better. She thinks the worst is over. Her Dr said after four days of no symptoms she can get out of "jail" She is home isolated in the guest room.
I have had that liver area discomfort on and off during my three years. For the past month or so I have not had it which correlates with my good PET saying liver tumors are resolved. I don't have bone Mets but I have a ruptured disc at T6. The nerve that goes to my left side really causes pain in like the kidney area. It hasn't flared up in a long time. I do think bone Mets/ nerves in thoracic spine could cAuse pain in the back area.
Also my MO was pleased on my recent exam that she could not feel my liver. Evidently, for the past six months she had been able to feel it.
My TMs have never fluctuated. Nor have liver enzymes. My Alk/phos went above normal only a few times but not by much.
bbpie. I'm so sad to hear about you being in the hospital. Sounds very scary and painful. Praying for better news from you on your next post. 💞
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wow, so much going on. I care for you all.
I just lost a member of my support group. I didn’t know her well but she was very matter of fact about her journey yet encouraging to me. She had been fighting MBC for several years and said she was ready whenever God called. She passed of liver complications according to her boyfriend. 😢Between the virus and cancer and fighting a tooth abscess surgery and an infected ingrown toenail, I feel like I’m facing too much. Then I read about you warriors and I am humbled. Stay strong everyone.
Dee
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Dee. That does sound like too much. Why doesn't the world stop while we fight cancer? Infected toenail, OUCH. I thought I was gonna lose it while I was having scanxiety and pandemic worries at the same time. So, I'm very relieved to have zero anxiety about that at least. The effects of this virus is very personal. My daughter is feeling better but she's been isolated at home for five days because her doc thinks she has it. My son's job is a huge worry. Not just because he's an anesthesiologist but because he's only working every other week because of no elective surgeries. It could get even worse for him. All the partners in his group are making only a third of their normal income. He'll be a partner in August. 💞
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I have to make the agonizing decision of living apart from my husband. That leaves me to take care of 4 kids 24 hours a day, make sure they are doing their ink in a schooling, teach my online classes, and do my treatment,. I don’t have the stamina to do all that but he is an ER doc and has to NBC go to work and had to see patients. So I am trying to muster the strength to self isolate from him for a bit. I have no idea how I will get through it.
Everyone stay healthy.
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Dee - so sorry for your loss. Losing a member of your support group must bring the reality of this disease to the forefront. But you have the group of wonderful ladies here to help you through, through loss and this virus.
Grannax - Congratulations on your PET, but sorry that your family is so closely affected by this virus.
leftfootforward - such a horrible decision to have to face, isolation from your husband, I myself could not imagine it. I hope you find the strength and are able to do it all.
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I had a petscan on Friday & the anxiety has been off the charts bc I can’t do the normal things that take my mind off it. I checked yesterday to see if it had been released on the portal yet, and there multiple appointment dates (placeholders) for the next few weeks including today’s dr appt labs & chemo. Checked again this morning & those appt placeholders are now gone & the appt today only shows labs & dr visit. Hoping it’s just something weird in the portal system.... trying not to panic as I really don’t want to have to start a new treatment in the midst of all this covid craziness.
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Nancy,
Good to hear from you. Thinking good thoughts for you. I"m with you on starting new treatment with all of this stuff going on. Fingers crossed.
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Well I just found out my treatment is changing in one of the worst ways possible. A financial counselor called about my treatment today & said "since you're getting a new treatment, we have to go over your responsibilities payment wise" I stopped her and said - "I have no idea the results of my pet scan, have no idea what treatment I'm being changed to or anything as I was seeing the dr this afternoon to discuss all of that. I'm not going to talk about the financials without knowing / understanding what is going on" After a moment of silence she said, "ok, you can discuss it when you get here then" What was she thinking?!?!?!? So, gemzar lasted 7-8 months which has been pretty much the norm the last couple of treatments. Hoping my MO will give me a better picture of how things are going. I will let the center know that that is not an ok way for someone to find out they are changing treatments.
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Oh, Nancy, that is absolutely unacceptable. What are they thinking???? I'm so sorry. I hope your MO is a little more skilled in the "people" department than this individual is (sometimes I question my own MO on this stuff.)
Whatever happens with your MO later today, perhaps you should think about another opinion on it? I was thinking myself that right now, if the MOs haven't been pulled into ICU care for the virus, they might have more time on their hands to do paper reviews of patients? I don't know if that's wishful thinking or not, but it was just a thought.
Take care and good luck with your MO appointment.
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