How are people with liver mets doing?
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Grannax glad you went to the hospital. Do they have you on vyco?
Bab
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hi guys,
My mom has failed the last few chemo drugs and the doctors told her there is nothing else they can do for her. She is triple negative. Although she's never had s biopsy. The cancer is currently confined in just her liver. Its been a year since she's been diagnosed. Her skin is a bit jaundiced, and she had to get 2 liters of fluid pumped out. She had s blood clot in her lungs. Today she feels better since getting drained.
She wants to keep going and try something else. I don't understand why the doctors are trying to write her off. There was 3 chemos that didn't work.the first chemo cleared it up entirely.
Any thoughts or ideas? Not ready to loose her and she isn't in any main just discomfort.
Was thinking immunotherapy or rick Simpson oil.
Thanks for everyone's advice. We are all in this f****d up world together. As my friend would say
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Great news babs! Hope for us all....
Z, sorry the infusion was so rough on you. Thankfully it's only two total.
Lindalou, gosh darnit! Sending hugs and hoping this ends pronto.
Grannax, wow, I thought poison ivy sounded bad but now this. I hope whatever they prescribe works magic and they spring you soon....
Christina, It doesn't say where you are located or what your Mom has been on. This info would be helpful for anyone to give advice. I would never accept Dr's writing someone off. Is a second opinion a possibility?
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I am located in London Ontario..the cancer clinic is at London health science centre. Victoria hospital.
its very crowded , there's like 100 chemo chairs. Sometimes I think they are too busy to care. A second opinion might be good
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Christina - TNBC has plenty of immunotherapy options, though mostly as trials. Depending on what's available in Canada. The treatment plan is also dependent on the extent of disease in the liver.
Definitely seek out a second opinion
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I am in the hospital, but I don't feel sick. It's weird. No pain, no fever just a very red face. I'm sure I'll be out of here soon. They said a day or two on IV then change to oral. I'm on rocephin. They think it's a strep bacteria. They did not do cultures because I had already been on antibiotics.
Yes, if I had to choose, I think I would pick poison ivy. 😫 ha
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Good lord Cristina. How do they know it is TNBC without a biopsy. If I understood your post correctly get a biopsy ASAP. MBC alone is 10-20 different diseases depending on how you classify.
>Z<
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Concerned about you Grannax. How are the treating what ails you? Are you still in the hospital? Kitties okay?
>Z<
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Yesterday evening I had fever and nausea. Felt better in the morning. Made it to Takayama and through a couple bites of Higa beef and then I was weak and feverish again. More beef for DD2, so she was thrilled. I am on Xeloda and Gemzar so I guess this is how it goes. Either that or I ate something I should not have.
Travel for cancer treatment does add another layer of issues.
400g of raw A-4 Higa beef ready to gril makes my daughter smilel. I am not going to regret this trip even if the treatment fails.
>Z<
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Yesterday evening I had fever and nausea. Felt better in the morning. Made it to Takayama and through a couple bites of Higa beef and then I was weak and feverish again. More beef for DD2, so she was thrilled. I am on Xeloda and Gemzar so I guess this is how it goes. Either that or I ate something I should not have.
Travel for cancer treatment does add another layer of issues.
400g of raw A-4 Higa beef ready to grill makes my daughter smile.
.I am not going to regret this trip even if the treatment fails.
>Z<
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Z she's so pretty. Making memories.
I haven't seen a doc yet today. I'll get another dose of Rocephin about 4pm. I have cellulitis for sure but I'm not reacting to infection the way I usually react. I don't have a high wbc. It's 5,5 but before w infections it would be 15 to 20. No fever, before it was high. No pain, before the pain was intense. So it's a little bit of a mystery.
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Z - so proud of you. Hoping your daughter enjoys some shabu shabu with Japan's tasty but pricey beef. I have many questions about how combining gemzar and Japanese Xeloda work along with heating up your liver mets. What meds will you be on when you leave the clinic? PM me when you are ready. I am signed up for IV Abraxane through Nov (12 rounds) and joined Inspire. Planning for big discussion re: immunotherapy on 11/14 with onc. Christina there is a Triple Negative thread that may help your mom, but please get a biopsy to confirm her status. What chemos has she failed? Get a second opinion. Grannax - feel better!
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Christina - thanks to Z, who's post compelled me to take another look at what you wrote about your mom. If the doctors there indeed concluded that your mom is triple negative without even taking a biopsy, you need to go to another medical facility as fast as you can. Just run. It's seems to be a killing field out there.
There are many options besides chemo today for BC. Please quickly get evaluated at a reputed facility as soon as possible.0 -
- Z- Your daughter is a doll!! Keep posting, more pics!! Where's her beer with that beef?!
Christina, and everyone with triple negative breast cancer- please remember that the CDK7 inhibitors were kickass in preclinical trials for TNBC-
there is a new phase 1 trial (from May) testing the first drug in this line, first time in humans. Keep in mind Ibrance is a CDK4,6 inhibitor, hoping that CDK7 works just as well..
https://clinicaltrials.gov/ct2/show/NCT03134638
So it is early yet, but ideally another whole new treatment, at least for TNBC, wold be CDK7 inhibitor with immunotherapy,
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Hospitalist came in and wants me to stay here another day at least. But, the cellulitis is getting better. She also explained they cannot use WBC as an indication of infection with me. That makes sense.
It's a beautiful fall day here in Dallas. I might sneak outside.....
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Grannax glad you're better! Hope you go home tomorrow!
Z your dtr is adorable. Dealing with BC here is challenging enough. I can't imagine dealing with it so far from home. I will tell you I found Gemzar VERY difficult. I had bad boutsof nausea Hope you turn around quickly
Babs
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The first two weeks of treatment they spend expanding dendritic cells and NKC cells they took on the first day. During that period I take Xeloda in low doses every other day and get two low dose gemzar infusions. If this is what a low dose is like, OMG. In any case, on the first day here they took my tumor markers and CEA had doubled since my last blood test a month ago. Went from 15 to 30. They take tumor markers after the first two weeks, after low dose chemo but before re-infusing the expanded activated lymphocytes. So we'll have that data point ...
Waking up in Takayama this morning in a Ryokan with DD. We'll be walking around this old city today. Might be a short walk, not feeling awesome. Terribly constipated, probably from drugs, and not sure what to do about it. Any ideas welcome.
I have been corresponding with my doctor's office about my liver biopsy sample. I also called Foundation One, who were very helpful. Armed with the information you guys gave me I was able to drill into the details and get answers. The nurse was clueless about biopsies and had been basically making up answers. They did take multiple cores but at our hospital they bind them up into a single block of parrafin and sent the whole block to foundation one. Unfortunately Foundation One only does genetic testing. Their reports do not provide immuno-histochemistry.
The nurse said that my sample would get sent to Caris for their test (which does immuno-histochemistry) after Foundation One provides their report ... we would have to wait two weeks. Also not true. Called Foundation One and they are happy to send the sample back as soon as they have taken their core, which they had already done. Should be back early this week and and we will send the block (of paraffin containing multiple cores) to Caris.
Z
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Z I am once again amazed at how you are managing so many details, so far away from home at the same time as you are sick from TX. I'm cheering you on.👏
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Z,
I told the emergency doctor the same thing about the biopsy. I will be speaking to her oncologist Tuesday. Her liver is pretty far gone and I'm not sure if its too late. She's coming back home tomorrow morning. She has a hard time walking and getting up. Japan looks wonderful and its nice that you are spending some quality time with your daughter.
I'm getting some cannabis gummy bears for her . Hopefully that will help her and give her a bit of appetite. Still thinking of the immunotherapy if she has the energy. They wanted to put a catheter in her body to drain the fluids, but if she did that chemo would no longer be an option.
Hope everyone here had a nice thanksgiving.
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Z, great picof daughter. DS adores sushi himself.
We had the best sushi in Hakkone, DH also enjoying haute cuisine kaiseki, throughout our journey back in 2002.
TMs dropped to 1500 from 2190 on the 3rd cycle of Taxol. I have appt this week for news. Bloated belly and neuropathy still hard on me. Trying not to rant most of the time. Then see myself in the mirror, get miserable.
Ir’s been almost 6 years and I am tired to stay strong, feel like killing time.
Anyway, it’s late midnight and I want sushi now:/
On to crackers..
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Ebru - good to hear from you, I was wondering about you lately. Good news on TMs!
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Ebru - I understand what you feel. I will be too tired to stay strong long before I stare down a 3rd cycle of taxol. I am so happy to see your post. I've been thinking of you. The tumor markers mean good news at your appointment. Let us know what they say.
How is your energy level?
>Z<
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My doctor hasn't once talked about tumor markers. Please explain what they are.
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This is the list compiled by Medicare of the 700 or so hospitals with the highest rates of Hospital Acquired Conditions.
Getting an infection from the hospital when you were admitted for something else is an example of a Hospital Acquired Condition.
Every major hospital in Northern New Mexico is on the list and has been for more than a decade. Rats.
>Z<
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Z, I am so glad you were able to get to the bottom of your core samples. Sounds like Foundation One is on top of it. I suspect they run into this issue every day. I would love to see their lab. The issue you had is probably so common that when F1 takes one of the core samples out, they do it in a way to preserve the remaining tissue knowing they may need to send it back out to another facility.
Stagefree, please don't despair. You are stronger then you probably give yourself credit for.
Everyone have a good week.
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Z- you are an amazing source of knowledge for all of us here. Being able to follow along on your treatment in Japan is so cool. Thank you for including us and sharing the pictures of your daughter.
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Z - looking quickly at that list for California- looks like most of the hospitals in the state are on that list. Rich and poor areas, big and small hospitals. Hmm
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Z, I truly understand that those stats are concerning to you. But HAC infections are so common in a hospital setting. The number one way to prevent most that can be prevented is strict hand washing. So pay attention to employees and make sure they wash their hands when they enter and exit your room. If they don’t, kindly ask them to. But with that being said, there are so many ways that happens. If a urinary catheter is left in too long the patient will get a UTI, which then it is a HAC cause they got it while at the hospital. Now with Medicare saying they will not reimburse for HAC’s, hospitals here in the US has had to make some major changes to try harder to prevent them. Like where I live they pull a urinary catheter out after 24 hours rather you need it left in or not. They would rather clean up urine, give you a bath, and get reimbursed. So even tho I know it’s concerning, in your situation as long as you get everyone to wash their hands, I think you will be just fine. Looking forward to hearing about your treatment. Keeping you lifted high in prayer. I hope my explanation eased your worries some
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Kaylynne,
Tumor markers are a substance that circulates in the blood, that may or may not be present, or elevated with a given cancer. They can be given off by cancers, and by other non cancerous sources. There are a few common ones that are often tracked, such as ca15-3, cea and some others.
Some doctors track them, others don't. Their elevation may or may not be a sign of progression. Personally I think their depression is a good sign during treatment, but they may initially rise as cancer cells die off rapidly at the start of treatment. Ultimately the scans (mri, ct, pet) give the final verdict.
For more accurate and complete information:
See National Cancer Institute:
https://www.cancer.gov/about-cancer/diagnosis-stag...
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Well put, husband.
Thank you, Kandy. That puts those numbers in perspective and makes me slightly less afraid to go to the hospital.
>Z<
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