How are people with liver mets doing?

Anotherone

uptake means the degree to which cells utilise glucose or saying it other way meyabolically active. Both of the above are cancer signs. A degree of uptake exists with normal cells obviously as everything uses glucose. The rough cut of pot is about 2.5. But it is not exact science as it is influenced by lots of other factors - what you eaten , what you usual blood sugar levels are , what particular organ we taking about, your renal function, the exact number of minutes from injection to test, the way they process data etc. I am not at home now so can not check mine - 8 think it was about 6. So as you realise your readings are low and getting lower. MBC 8s ot a sprint , it is a marathon. I would rather do it slowly with least damage. Obviously if metastasis affect your functioning badly than knocking them down quickly make sense as there is damage to other organs going on in the meantime. Otherwise I see sense in what your oncologist does. Have you read some papers and articles saying they come back with vengeance a few years after chemo often? Obviously I do not know which one is the best course of action for you , just writing all I know on the subject xx

NicoleRod

Thanks Lori and Anotherone....

Anotherone I have heard that about coming back with a vengence is that just with relation to BC??...bc I also hear about people that do chemo and go into remission for years like 15 years..but that is not with BC.

Anotherone

I think it is related to chemo in general. Apart from some specific very chemo treatable cancers. Of course it does not mean that most cancers come back with a vengeance; it is beyond doubt (to me and overwhelming majority of academics and patients and oncologists and lay people ) that chemos improves survival in those cases where it is offered - there are stats after all . Not only 5 year survival but 10 year and over the life span. For MBC I thought no treatment ( chemo, old stats) was like 6 month and with treatment 3-3 years median. So it has benefits and quite considerable.

What some studies say that some cancer cell properties change making them more invasive and that in some cases it comes back with a vengeance. Which does not contradict that overall it reduces metastasis and extends lifespan - heck some people were at death door with ascites and non functioning liver etc. Chemo knocked the cancer back and they are/were around with decent QOL for a considerable time after.

It just that if the same benefit can be derived without chemo it would be preferable to do it without - don't forget side effects- how do you like the idea of life long neuropathy for example making it impossible to participate in sports much or bot being able to use your hands properly...

funthing42

Yes grannax2

Premed Dexamethasone. That's it. I was told the carboplatin would ruin my heart. Using it only if needed.

Gumdoctor

Hello All -

Dropping in after a break. 3 scans yesterday. My Dr Angel called today to review results.

Bone scan - No change.

Chest CT - No change in multiple ground glass lung nodules.

Liver MRI - New blood clot in liver (formed while taking blood thinner Eliquis) and multiple new lesions not evident on last MRI 2 mos ago. Lesions suggest liver infarcts (tissue death) but radiologist not sure what he is seeing.

Plan for now:

1. Switch to Lovenox injections 2x/day starting tomorrow.

2. Liver ultrasound on Monday to get a better understanding of what these new lesions really are.

Dr Angel ONC very concerned. So am I.

Has anyone else had blood clots to deal with while on blood thinner? Anyone else had liver infarcts?

Gumdoctor

candy-678

Gumdoctor- Sorry I cannot help with your questions. Just wanted to say I am sorry you are going thru all this. You are in my prayers.

Anewbreath

Gumdoctor, I’m thinking of you. I wish I could answers but, I feel confident your Angel MO will get ahead of this situation.

Frisky

Gumdoctor, I’m saddened by your update. I hope someone can answer your questions and that you experience a 180 degree turn, and receive great benefits from future therapies. big hug!

NicoleRod

Gumdoctor, so sorry to hear about your latest troubles. I hope this clot situation gets resolved quickly. Praying for you now.

JFL

Gumdoctor, I hope the new blood thinner works well and quickly. I haven't heard of liver infarction but hopefully someone will chime in about this.

NicoleRod

Liver Metsers...anyone hear anything about MCT oil being bad for liver? I read something about it...but ya know that could mean gallons of it...they never do specify amounts...? I saw a great product of Ghee and Mct oil...you take a spoonful and mix it in smoothies or coffee (Black Rifle Coffee Company) sells it. Its digested quicker released into blood stream good for brain function and a good energy source...

ShetlandPony

Gumdoctor, holding your hand across cyberspace. You’ve really been through it. May your next scan report contain the word “unremarkable”.

ShetlandPony

Ok, can I vent a little bit? This cancer stuff is starting to impact my life more and I don’t like it! Only two liver lesions showed up but the location of one! I had to have ERCP to get a stent for my bile duct, and add Halaven/eribulin to Xeloda. The Halaven is kicking my butt. So tired! And two days after every infusion, I get a fever. We don’t know if the stent is getting infected or what. The first two times I dutifully reported, and was put through all the screening for infection, and jailed -Er- hospitalized for two or three days for IV antibiotics. All the tests come back negative (no uti, no pneumonia, blood infection, etc). So now it’s round three, and the nurses are annoyed with me for not submitting to their protocol a third time. I had some antibiotics on hand which I started after a day of fever. I am actually at the cancer center after my MRI, trying to decide whether to go ask for blood tests and risk getting admitted, or just go home. In any case, I am missing my kid’s performance today!

Frisky

Shetland I'm so sorry you're experiencing so many issues back to back...I can totally emphasize with your frustrations and hesitations....I hope you get the help your need by a kind nurse

Try to find a spot where you can find your center and sort through your options in a calm manner, I'm sure you'll make the right choice.

Please, let us know what happens...maybe they can lower the amount of chemo they're giving you if the SE are so devastating...please take care of your self first. It's sad that you might miss your kid's performance, but I'm sure he will prefer that you don't compromise your health

NicoleRod

Shetland that just stinks!!! Ugghhh FREAKIN CANCER SUCKS!!!! I will pray you are feeling better soon!

candy-678

Shetland- So sorry you are going thru all this. Better safe then sorry with the fever though. Take care of yourself.

ShetlandPony

Thanks for the support, guys. Now the fever has gone back to 101.5. I can’t decide whether to check in. I wanted the urgent care doc to give me a second type of antibiotic pill but when I refused cipro he was done with me. I don’t know if I really need to get IV antibiotics and monitoring, or if this is just CYA.

bbpie

I recalled from past posts that ShetlandPony had the ERCP procedure. I am sorry you are dealing with infections and fever.

I’ve been having increased upper right abdominal pain especially these past two months. I mentioned to the doctor I thought it was odd since my tumor liver is not as big as a year ago. My how quickly things can change for our health! I had a one month follow up with the oncologist on 9/5 with treatment change from Ibrance/letrozole to Doxil because of progression. My first Doxil infusion was 9/10 with bloodwork showing elevated liver enzymes. I only had nausea meds prior to infusion no steroid or decadron. I’ve always had the full premeds. During the infusion within 13 minutes I felt a cold sore coming on by my right upper lip...odd I rarely get cold sores. Also wondered how I could be getting mouth sores so soon. Of course it was an allergic reaction. Stopped the Doxil immediately and gave me Benadryl. Another dose after 30 min too. After 2 hours the finished the treatment at the same slow drip with no further issues.

By Friday 9/13 I was in the Emergency Room with highly elevated liver enzymes (ALT = 405 AST= 215), yellowing in whites of eyes, horrible constipation, nausea, pain, pale stool, and a bilirubin level of 5.3 (normal top range is 1.2). Doctors thought it was cholangitis, but I had no fever or infection. No gallstones and only swollen gallbladder wall. After several tests, I had a titanium stent placed in my bile duct on 9/16. The tumor is pushing on the bile duct narrowing it. Because of my C2 vertebrae tumor issues, I had to wear my cervical collar during the procedure. The anesthesiologists were very cautious. I had a painful arterial line in my wrist to show real time blood pressure. Had meds to dry my throat, and a chemical breathing treatment to further numb the throat. All this because I would be intubated while awake. As soon as they knew the tube was in, I would be quickly out to sleep. I didn’t have the surgery laying on my belly like usual so the had a much harder time.

The night of the surgery my back pain was so horrendous I finally projectile vomited. The blood levels came down slightly the next day only to rise again the next day. I had the procedure again to ensure the stent was in place and to make sure the hepatic arteries were flowing. The second surgery, I was put to sleep normally but only when I awoke from surgery the intubation tube was removed. My bile was just slow to flow. I went home Thursday and feel a little better. Still have horrible upper right back and front pain especially at night.

I am scared outta my mind this is the beginning of the end. And will this happen again with my next Doxil infusion?

I had a week from hell. Just a reminder to everyone we are our own best advocates when it comes to our health and individual situations. Don’t wait!!

Anewbreath

shetlandPony and bbpie- I’m so sorry and praying that your MO will step in and help you find a comfortable place to land. No doubts you have been through so much and praying things will change for you soon. It’s scary how fast our situation can change in a heartbeat. Each new treatment is scary but also a piece of hope we need to take. We are our best advocates in this time of new biological revolution! There is so much support on here and we are here for you. I’m praying you both feel better soon!

SandiBeach57

Shetland, a 101.5 fever? I am worried about you.

Can your stent be checked for infection? Is this a SE from Halaven or Halaven/Xeloda combo? Maybe your body is in a reative state. I am rambling..please trust your instincts.

JFL

Shetland, so sorry to hear about your challenges with fever. It must be hard not knowing what is causing it. And I hate to hear you have to miss your kid’s performance. 101.5 is certainly high.

Bbpie, you have had a rough go. Seriously. You are in my thoughts.

I hope things start improving for both of you soon. Things can get bad quickly but things can also turn around quickly

Frisky

bbpie, I hope that was a singular case of a bad reaction and your next Doxil infusion is uneventful.

I'm undergoing Doxil infusions myself and have liver mets, so I too worry about what can go wrong, every time I go for my infusion....or when my liver might start to fail....

These are stressful situations....I hope we can all keep on surviving and transcending them. Best wishes

ShetlandPony

When my fever to 101.9 I admitted defeat and checked myself in. It went to 102-something. Yes, Sandi, I will be discussing this pattern with my onc before my next infusion. They can’t really check the stent for infection directly; they can rule out other causes and then they have to proceed assuming infection. However, I did have an abdominal MRI yesterday, requested by my onc and the ERCP doc. This is to see if I can get the stent removed. I don’t know if they could see infection on the MRI. If the tumor has shrunk enough, I think the stent will come out. It has to be removed or changed in the next four weeks because it is the plastic temporary kind. Thank you, everyone, for your kind words. They do help.

Sigh. Missing a dance workshop today. I hope someone waters my plants at home. The bright spot is the nurses and assistants are very kind. The nurse remembers me from last time.

bbpie, what an ordeal. You need a break. Any chance your onc would try a different chemo?

candy-678

Shetland- Prayers for you this morning. Fevers are scary for us. And hospitals are not fun. Glad you have a good nurse that remembers you.

BevJen

Shetland,

Good luck. I hope you can get to the bottom of this.

Nkb

Shetland- I hope that you are home by now and your plants have gotten a nice long drink of water! The problem with your situation of repet fevers is that the next episode may be totally different from the last one and truly be an emergency that needs hospitalization- when something happens over and over we can start to decide that we know the drill and don’t need to go back through some onerous process. I wondered also if it was a drug reaction?

Bbpie- oh my goodness- what an ordeal. I hope that you are comfortable now and your liver has quieted down. Don’t wait indeed- it is my new mantra to retrain myself to do what I want/ go where I want while I still can. Also lose some of my deeply ingrained fiscal responsibility!

Hugs

SandiBeach57

Nkb..I like how you phrased that.. .." lose some of my deeply ingrained fiscal responsibility".

I need to do more of that.

Kattysmith

Shetland and Bbpie, my heart goes out to each of you. The lives we lead; the things we endure...may this week bring comfort and answers! Thinking of you both.

Katty

NicoleRod

Can someone please tell me their thoughts on milk Thistle for when liver enzymes are high. I saw on people say its great but then I read on Dr. AXE this:

Also note that antioxidants like those found in milk thistle have been shown to possibly interfere with the efficacy of some cancer chemotherapy drugs by protecting cancer cells from cell death.

Can anyone add anything about this?

I am going to cross post as well in other thread where I think this subject came up but since this is the Liver Mets thread I am hoping it will get a lot of feedback.

Thanks ladies

ShetlandPony

OK, Nkb. You have just put it so clearly, about why I always have to report and go in. Thank you. And thanks for your good wishes also, candy, Bev, and Katty. Sandi, let us know what wild and crazy plan you come up with. Nicole, I don’t know much about milk thistle, but I know I did decide to treat myself to artichoke hearts because they are good for us; I think the plants are related.