How are people with liver mets doing?
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Sue2009: I have liver mets. These were dx in Nov 2016 after I developed a severe pain in my side (it came suddenly one afternoon). I have have had pain there quite a lot since. Sometimes it’s worse and I feel it particularly on breathing deep or sneezing, other times it is barely there. I was worried when after it had subsided it came back. But I have had good scans alongside pain and I attribute the pain to the tumors being bashed back by treatment. Back in April, when my bilirubin went really high and I had lots of mets develop I wouldn’t say the pain was particularly bad, but there. I hope this helps your worry. In the end , whilst it’s important to report pain to your doc,for me keeping a close eye on liver blood markers and periodic scans is how my MO and I monitor my progress.
Sarah
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I posted this in April concerning liver pain:
“Concerning liver mets causing pain....when I was first diagnosed with liver mets and had been started on Abraxane, I was having pain/pressure on my right side under my lower rib cage, where my liver is, I was very concerned about the chemo not working (my tumor lab #'s have always been normal and was waiting for scans) I asked a friend who is a GI-heptalogist (liver specialist and sees people with primary liver cancer-cancer that started in the liver) who answered me:
"Pain in the liver seems to be very unpredictable and usually doesn't seem to be a helpful indicator of what's actually going on. People with massive tumors being treated often have no pain and sometimes people with small lesions can have pain. Most of the time mass lesions in the liver cause no pain"
When I asked this, my reocurrance in my breast had been EXPLODING prior to starting Abraxane, and after I started the Abraxane I could feel the tumor 'melting' away in my breast. So, in my case, I think my pain in the liver was the tumor becoming necrotic and irritating the live tissues on the edge of my liver."
Since then I did feel “pressure" when my liver met started growing, and again, more persistently, when the new meds were working. I think if your liver met is near the outside of the liver you may feel something because the liver itself doesn't have nerves, but surrounding structure does.
My 2 cents..
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Raven, there's lots of good advice here. I want to praise your exercise and encourage you to keep it up! Keep walking! I think I read that you play golf too! That's wonderful. Your counts will rebound and eating right and exercise will help that a lot.
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sue2009. I had liver pain right after I had my y90 procedure. It hurt to take a deep breath, a sharp pain. I also had sharp pain in my right shoulder. I called my IR and he told me it's referred pain from the liver and would go away. It did in about 24 hours. My theory is that the liver mets were mad about being zapped by the y90! But, it was weird for me and scary. The next PET I had showed no uptake in liver mets. So it worked.
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serb4. Yes, it should come up, just in time for you to get your chemo. Did you get a copy of your labs? Just curious what your ANC was? Absolute Neutrophils Count was. Just curious. It's different than total WBC.
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It looks like my liver mets are responding to the Halaven and Keytruda, I just got a call from the nurses with a preliminary report. I'm very relieved to receive the news.
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Sue2009 -- When I was on A/C chemo for extensive liver mets, I sometimes had sharp pains in my liver. It was determined that it was the cells dying off; so, be aware that there can be pain when that happens. I actually went to NED after 6 rounds of A/C, & a hysterectomy and stayed there for 3 1/2 years. So, be hopeful, but if the pain continues, you should still talk with your doctor about it.
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KPW3- wow thats very exciting keep us posted.
Raven
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Sue2009, I do have liver pain from dying mets, particularly the first few months when I start a new med. It hurts in certain areas within my liver where the tumors are located. As for pain from active or growing mets, I have felt a bit of pressure, like I could feel the presence of my liver more when I lean forward, but I wouldn't describe it as pain. Also, I have had an area on my back near my spine on the liver side that is a bit numb under the skin - from the mets pressing on a nerve that runs behind the liver. When I was first diagnosed, the area just right of my spine running up and down along the upper 2/3 of my back was very painful and tender to the touch from the liver mets pressing on a nerve. I also feel a tightness on the right upper middle back when I take a big breath, particularly when lying down, which feels like a tight muscle stretching when I breathe. It is always there but sometimes will become more apparent when my liver mets are larger. For the longest time, I thought all of the various symptoms were from my bone mets in my spine and in my ribs in front and back of my liver. It took me a few years to figure out that all of these symptoms were liver pains.
KPW3, great news Halaven and Keytruda is working!
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JFL, that’s a very good description of liver pain/discomfort.
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Hi girls,
Need advice again. WBC coun ton day 17 after chemo 1.7 with neutrophils 0.3. I am scheduled for a liver biopsy on monday morning the 20 th. Any thoughts???
Raven
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Hi all,
Hospital called and wanted me to take 2 shots of Zarzio to help get my white count up before the biopsy. They were in ready doses just a short needle sub Q. Has any one else had this? or any other help getting white count up, esp. neutrophils?
Raven
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Hi Raven, I haven't had that but I hope it works well! Someone who has had it will be along to answer your question. Keep us posted how you're doing.
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Raven, It looks like Zarzio is a biosimilar as filgrastim....and I have taken the trade name Neupogen. It worked wonderfully on me, brought my WBC and ANC up and I was then able to go on vacation. I take Claritin anyway, but I was told to take it with the neupogen for the muscular and bone aches that some people get with taking it.
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serb4 I've heard of people having that drug to help get neutrophils up but mine never went as low as yours are. I think they are trying to get it up in preparation for the liver BX. I'm sorry they went so low. I know you need the info the BX will provide, I'll be praying you get to have it on Monday.
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Hi all again,
KPW3- it is called filgrastimi in the leaflet. These drugs have different names depending on the company this drug company calls it Zarzio and drug company is SANDOZ. I am in Europe sonames will vary.
How many shots did you need to bring up your white count? He told me to take one today and one tomorrow night and I should be good for the biopsy on monday??. I am not going to take this chemo without a discussion. it totally wiped out my white count.
I would like to know how many of you have taken just the Eribucin, thinks its the same as (Halaven) without anything else with it.
Raven
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Thank you Granna X- by the way I am having my CT scan viewed my a radiologist in Dallas who does Y90. Just a question of getting more info about what´s going on in the liver. I was doing fine on Taxol until this liver tumor started growing. not good. They think it may have a different expression than my original cancer, hense the biopsy.
Raven
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Muddling- Thank you for always answering me, we have a similiar situation except my liver flipped out and tumors enlarged on the Taxol. I still cough and know it´s still in my lungs but nothing like before the Taxol. Tell me what meds you take now. Are they pills or Iv? Do you have bone mets? Do you get Zometa Iv also.
Hugs,
Raven
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Serb4. Are you seeing Dr. Van Meter? He was my IR. That's great that you get to come here for an evaluation. You can't be too careful with those liver mets. Finding out all the information you can is so important. I'll be very interested to hear about your appointment.
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serb4 I just re read your post. You're not coming here but your CT will be reviewed here. That's good and a lot cheaper than than flying over here! My MO also says she will get new pathology/receptor studies if mine go crazy again. Have you had genomic testing? I did with Foundation One. They found ESR1 alteration and a few others. They will need a sample of your tumor to do the test. There are other companies that do the test. I don't know who you could use in Europe.
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GrannaX2- I have a family friend who has offered to look at my CT scan and see is I qualify for Y90, his colleuge does them. At this point I want to see how the meds work. Before going over to Dallas. I don´tknow his name, but he does alot of these I´m told. How long have you had liver mets, my tumor is 5.6 cm and lots of smaller ones. Might need to shrink before doing something else.
Can you tell me what chemo you have taken for your liver mets and how long you have been dealing with this. I have ling and bone mets too. what a case.
Raven
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Hi all,
my ALT and AST which had been normal for the past three years have skyrocketed since I started taking X.
Are these the signs to what's to come? Mets to the liver? Or I am freaking out for no reason?
So far the Mets have remained in the bones, but I worry that the 8 pills @ day of Xeloda might be destroying my liver...help
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Hi Raven,
I take Ibrance and letrozole, both are pills. I get an injection of Xgeva once a month for my bones. That's all I take at this time. I have "innumerable" bone mets and a compression fracture to T11. I think it is somewhat better; it doesn't hurt as much. Yes I have liver mets ( I think I have four ) ,and I had some kind of lung involvement that seems much better now. I never got a very good explanation about the lung part of it and I'm deliberately not focusing on that other than reading the scan reports every three months or so. My breathing trouble is what led to my dx but it is SO much better now. Knock wood 😉
I'm sending you best wishes that they will soon get your liver straightened out and back on track!
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serb 4. Since my y90's my PET scan says my liver mets are inactive. But, they can still see them, so they are not gone. I really don't know exactly what that means except that it's they are showing no uptake. I don't have CT because of allergy to contrast, PET does not tell you size just uptake.
I haven't taken any chemo for liver mets. I'm on Ibrance and letrozole since DX of MBC in 2016. It worked on lung and chest but not liver.
This is my fourth DX of BC and MBC. I've had lots of chemo in the past 25 years.
Meowmix. I would be freaking out, too. Mine have always stayed normal range for the last almost two years. Could it be a reaction to X? Mine were normal even when my liver mets were active. I'm curious to hear what your MO says.
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Miomix- All my liver function tests have sky rocketed since I started chemo. Taxol and got worse after first dose of new stuff. That´s why I´m having a liver biopsy monday along with 1 cm growth of tumor in liver on the Taxol.
Yeah..it´s scarry as hell but I feel fine. Just got home from a 3 km walk. spend my days running errands. sick?? who me?? that´s what thelabs say anyway. Only symptoms i´ve had were the lung mets. That´s why I went to the dr. in the first place. I am only 3 months in the game exactly today!
Plan to be here for 20 years! not 2....need lots of time so I told my onc. start multiplying. I am not punching out. Keep your chin up and just keep swimming!
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Grannax my MO tends to be in denial about all my SE. the truth is that my TM have not changed much as he increased the dose, so the only conclusion I have arrived at, is that the increase is only damaging my liver, which we can all agree is very important and should not be neglected for a potential benefit that has not materialized yet.
He told me to NOT take antioxidants, but I guess I will protect my beloved liver by going back to Milk thistle, NAC and coffee enemas twice a day and wait a month to see if it makes any difference. The stuff we have to put up with....I swear!
Serb, unfortunately I suffered from two collapsed vertebras because I didn't know any better, and didn’t act to protect myself from the SE of Letrazole. I then lost my digestive abilities due to iBrance, what I have learned from those experiences is that allowing the TX to destroy vital components of my health will not help my case. We die from malnutrition and fungal infection, rarely from the cancer per se
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Raven, I was given a short acting, neupogen, the day before my infusion, and a long acting, neulasta, the day after. They gave my neulasta (the last 2 times I've been given it) via a small devise that attaches to the fatty subcutaneous area of your upper outer arm (could use on your abdomen). It infused the drug which was in a time release functionthe next day.....very high tech. I'm thinking it's actually cheaper than paying for the time it takes in the infusion room with the nurse giving it. I forgot it was attached and actually got into the bath and was there a good 20 min and it still seemed to work. It made my WBC's almost normal....but that could be my reaction (ie...my bone marrow is very reactive to the drugs).
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Miaomix, don't give up on X yet before you have more information. My numbers skyrocketed for 3-4 months (AST, ALT, Alkaline Phosphatase) while Xeloda was doing a heck of a job shoring up my mets. Even if you don't have liver mets, dying mets from any location circulating in the body will be cleared out by the liver and AST and ALT will be impacted. I am currently dealing with that now - elevated levels of those three but positive scan results. I believe the Doxil / Y90 are going to town on the liver mets. My AST and ALT will also temporarily spike up when I am sick with a flu or other bug. When is your next scan? What is the total mg of Xeloda you are taking? I took 3000mg/day (6 pills) for 14 days on/7 off.
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JFL thank you so much for sharing your experience with X and liver markers. I don't want to give up on X, I want to make it work for me for years, your experience is so reassuring and I'm so happy to know that it worked for you so well for so long, but I'm very worried because my situation seems to me very peculiar but maybe it's not.
I'm currently on 4and 4 one week on one off, and have been on it for three months. When I started I was on 3and 2, than 4and 3 and now 4and 4. My MO instructed me to not take any antioxidants and I therefore stopped taking NAC which I believe was offering my liver some protection.
The high levels ofTM throughout have not changed much, but since starting X my ALT and AST have gone from normal throughout the 3 years diagnosis to 8 fold higher. My platelets are suddenly also out of whack as well. Otherwise I'm not suffering from any other side effects, in fact I'm feeling better than ever energy wise, mentally and emotionally. I love the one week on/ off type of thing
My pet scan is scheduled for next month, but I'm afraid to continue taking the medication at the current level. I can't expect any help from my MO because he saw those same ALT and AST level yesterday and said nothing, he was concerned about the platelets. I have realized by now that MO's take it for granted that there will be collateral damage but because they can't control it, they tend to be in denial of negative consequences.
However, according to the American Cancer Society—a bastion of conservative thinking—serious and life threatening effects from TX include renal and liver failure, heart disease, and blood clots, and it's the combination of these damaging consequences to the body which often leads to the occurrence of a secondary cancer, and this is what truly scares me. So far the collateral damages have been the destruction of my disgestive system and a broken back, I would rather not add the loss of my liver.
The question for you and the rest of the community is what I should do till the results of the pet scan come out a month from now. Stay on the same dose or reduce it by 25% since the maximum dose has not affected my cancer markers, but then we all know that TM are not reliable.
I'm thinking on taking the NAC again, detoxing the liver naturally, and going back to coffee enemas twice @ day, which is a real pain in the neck and see if I can help the liver get rid of all those dead cells and toxic residues that it's finding so hard to eliminate on its own....
What do you think? Is it wise or unwise?Thank you all for your insigh and support on this matter.
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Hi,
All my tumor markers are sky high on the chemo, they were coming down then got even worse after chemo was switched. I am not taking another dose of this same level, it totally wiped out my WBC and neutrophils. I just finshed a great book by James W. Forsythe, MD called Take control of your cancer. He uses lower dose chemo and diet alkaline and vitamins to treat stage 4 cancer. says large doses do more harm to patient than good.
20 years ago the doses were really high now onc are using lower doses and getting better results. chemo is poison as we know.I think my tumors have grown because of the chemo, but we shall see. Liver Biopsy on monday if I can get my whit count up.
Can you tell me how low your counts went 14 days after chemo? isn´t 1.6 very low with ANC 0.3 ???
Iam taking another shot tonight of the filgrastim. I got bad back pain from it,but the claritinhelped.Thanks for sharing with me that info.
Raven
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