How are people with liver mets doing?
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Reading into that NY Times article about immunotherapy: the doctor asked to be part of a closed-group Yahoo discussion where women were sharing tips. Does that sound familiar? I wish more doctors were open to hearing about the information shared on these types of forums. As we know, they provide vital, vital information.
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I was reading some older posts, and i just saw the notice about LindaE, i just can't get over it, she felt it going downhill. She was so special, warm, a true friend. Very tough to hear this. Rest with the angels.
Is anyone in touch with Wendy didn't hear from her in a while.
I posted on Dani's thread, but im posting here too. First of all the liver area feels hard. She cannot slouch, or bend over, it's painful. WTH is that? Why is it hard. Her appointment for new tx is tom. The infusion of Methotrexate is over 1 hr, i don't know the dose yet. Her AST/ALT went down considerably, but ALP is in the 500 range, her Creatinine is 0.35 that worries me, protein a bit low, the bun/creatinine ratio level just a bit higher - could anyone here tell me about these #s. I don't really know what's going on will all that.
Robin are you back at home?
Zar when are you going away?
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Mom - if you mean Wendy from Vancouver then she just recently posted in this thread (Feb 20) twice and mentioned you and Dani. Sounds like xeloda is kicking cancer's ass for her.
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Mom. My MO told me not to worry because my liver area was soft not hard. That was a long time ago and I did not ask her anymore questions about it. So, I don't really know what it means for sure. I don't know much about along those numbers.
I'm glad she is going to MO tomorrow, He will know. Are you going with her tomorrow?
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Thank you Cathy, i see it.
Grannax probably not, it's pretty much a long day tomorrow, and she wants me to be waiting for her kids they should have someone home
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It is a private clinic. If you are interested google dr. Kleef immunotherapy. I am now at fever therapy week with one patient who had 4th stage pancreatic cancer (pancreas, liver, stomach, lymph nodes, peritoneum) and all his tumours dissapeared except two lesions in liver which got smaller and did not progress afterwards, so he came second time after half year. He looks in very good shape.
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Maaki - I am pursuing immunotherapy as well although a completely different line of treatment. There is more variety in immunotherapy treatments alone than there is in all other cancer treatments combined.
I don't have a PDL-1 expression on my tumors but there isn't actually any correlation with PDL-1 expression and the efficacy of PDL-1 treatments. It turns out PD-1 expression on the lymphocytes may be more important. A high Tumor Mutation Burden, however, does predict response to PDL-1 inhibition. Mine was low or moderate. We've put PDL-1 inhibition on the back burner for the moment but it is on the list and I am very interested in how you do with your treatment.
The trick with PDL-1 inhibition alone is that it takes the brakes off the immune system but it does not drive an immune response. Something like taking your foot off the brake in a flat parking lot, you still have to hit the gas to get the car to move. I believe that is the point of the interleukin induced fever. What you are doing makes sense.
I do have one question your doctors, if you don't mind asking them. Here in the US we believe that ERPR+ breast cancer is invisible to the immune system. All cancers need to develop a strategy for evading the immune system early on or they would never proliferate. The immune system takes care of cells gone rogue routinely. ERPR+ breast cancer is believed to evade immune surveillance by withdrawing the MHC1 receptors that present MHC molecules to the T-cells. T-cells recognize foreign cells by checking MHC receptors for proteins that indicate the cell is stressed and/or "non-self". The thinking here in the US is that ERPR+ breast cancer has very few MHC receptors so T-cells won't detect them, determine they are non-self, and kill them. The ultimate goal of all immunotherapy is to get the T-cells to recognize, remember and kill the cancer.
Outside the US, doctors still use immunotherapy on ERPR+ cancer. I do think it is a harder problem, yet there are still results. I am interested in your doctor's thoughts on whether and why ERPR+ cancer will respond to immunotherapy.
In any case, I am very interested in your progress as are countless other people on this forum. Please report back. Inspire has an active thread on PDL-1 inhibition with several very knowledgeable scientists chiming in periodically. Would you consider posting your treatment and experience there as well?
PD1/PD-L1 is the superstar checkpoint
I expect great results from your treatment but the fever must be tough. You are a tough woman.
>Z<
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MomATT- can it be that liver feels hard because of mets-induced cirrhosis (scaring)? It's very scary.
Maaaki- Count me in among those following your postings with great interest. Immunotherapy is the biggest game-changer cancer has, but nobody knows how to get us to respond. Obviously in europe your doctors are able to try alternative combinations that could only be done here within the context of a clinical trial. So, can you tell us exactly the regimen you are on, including details of the fever (how high for how long) and the side effects you are having? And are there more details about the successful responses the doctor has mentioned?
I do wish oncologists would regularly peruse our threads and proffer advice or comments (they would learn plenty) and perhaps a clinical psychologist or two as well...
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Thanks Maaaki. I believe this is a link to Dr. Ralf Kleef's immunotherapy:
http://www.dr-kleef.at/en/immunotherapy
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Very intriguing article Lucia, thanks and we will follow the closely. Maaaki, I will look forward to more updates as well.
JFL, mixed results are hard as we all hope to stay on the same treatment for as long as possible. I think I would err on the side of less SUV uptake but it's a tough call. I hope you get solid answers soon.
Grannax, My Cobra insurance finally came through and we are back on track except now my Onc office has not yet called me back (two days) to schedule starting treatment! AAAArrrrrrgggghhh! Why do they take their sweet time. I am almost 4 weeks out after stopping Xeloda......
Mom, hope they have an answer and it's nothing to worry too much about...
Wendy, That's so great that Xelofa is working for you.
Z, thanks for the explanation on the T-cells. Very interesting new piece of info for me.
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Well, I am definitely back in the liver mets category again. I haven't caught back up with all of the posts, but I'm glad I kept this thread favorited. It seems the Afinitor is working on my lymph nodes, but not so far on the liver met as it is glowing brighter. Hoping the next few months changes that around, but we'll see.
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very informative as always. I have a liver biopsy on Friday. Will see then if anything has mutated. A tissue sample is going for testing. Not sure what impact that will have.
Great news Wendy on the xeloda!! Amazing result! I think weekly taxol is being suggested after my ibrance/faslodex and liver mets being found. Let's hope we all find something that can knock the sh#t out of our cancer.
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MomATT - Alk Phos is an important but tricky marker. I've learned a little about it this week because mine is rising like crazy.
Alk Phos is generally part of a liver panel but it can also be produced by the bones and uterus and other organs when there is damage to tissues. Mine jumped from 200 to 800 in the past couple of weeks, which of course freaked me out. I'm in japan now. Here they test for another marker "GT" which is also high and is generally an indicator of bile duct damage.
The combination of high GT and high Alk Phos suggests that my high Alk Phos originates from liver damage and specifically bile duct damage. My doctor here said that, 800 is not that high and is common in alcoholics. Apparently, alcohol irritates the bile duct. We do have to monitor closely for rising bilirubin. Rising bilirubin suggests that the bile duct is actually obstructed, probably by a tumor. That's a serious condition. Fortunately my bilirubin is fine.
In Dani's case with widespread mets, tissue damage outside of the liver like the bones or uterus could be driving up Alk Phos. It's something to monitor because indicates response to treatment, but apparently 500 is not necessarily dangerously high as far as overall health. As I said I am at 800 and feeling fine. Headed out for a run ...
>Z<
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Z- How is Japan this time of year?! I've been reading about the abscopal effect and tests combining immunotherapy with radiation of different dosages and lengths of time. I know you had radiation at Mayo Clinic, but was it combined with any kind of immunotherapy, or is this what the Japan group is providing? Hoping for some great news for you!!!
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Cure-ious -
The recommendation was to do the radiation at Mayo before returning to Japan for the NKC therapy, Dendritic Cell Vaccine and hyperthermia. Hoping for an abscopal effect of course. However, there was Xmas and the time to organize and execute the radiation and in that period that the cancer in my liver went bananas.
I am optimally prepared this time. NKC's could easily take care of the progression and I am hopeful, but whether it works on me, this week, still depends on factors I don't control. Of course, I don't have to explain that to a research biologist.
It's a lot colder than I expected and raining, which gives me an excellent reason to lie around and read. Enjoying my Airbnb in Azabu Juban immensely.
Thanks for thinking of me.
>Z<
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Good morning, Husband 11, yes the web adress for dr. Kleef is right. He has a clinic close the Schonbrun palace in Vienna, which is very nice area. Here the patients firsr get tested for CTC-cells and also he send the tumor sample for molecular testing to Bojar laboratory in Dusseldorf in Germany. Based on this data and your objective finding he plans treatment, which is usuaĺly in 6 weeks intervals. I dont have any tumor now since I had resection in november. My liver metastasis was different from original tumor, lost PR rceptor and ki67 went donw from 40% to 10%. Acording molecular report grade 1. Original was 2-3. My tumor mutation burden was low as well. No interesting mutations at all. FoundationOne report said equivocal for CDK 4/6 inhibitors so I did not started yet. May be later if necessary. So if the patient has high grade he gives metronomic low dose chemo, acording the sensitivity test. I had taurolidin, vit c, alphalipooic acid infusions and local hypertermia on my liver. Than two weeks of nivoluma, and now one week of fever. It is manageable. I will ask him tonight your question about imugenicity of ER/PR + tumors Zarovk
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And regarding fever. They start with interleukin in the evening and monitor you very closely for whole night. Best fever is over 39.0 C. (102-104 F). I had 104, which they were very happy. They know from experiences when to stop interleukin so the fever is not sooo high and usually you stay whole night, they give you oxygen, monitor blood pressure and heart whole night.
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Maaaki - Very cool thank you. Keep the details coming, we can't get enough. My mom was Czech, born in Brno. I used to speak Czech but now I can't remember my own name.
>Z<
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Z Your name is Lightbulb!
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Maaaki it is very interesting what did you write about your treatment. My mom, living in Czech Republic is stage IV with peritonei carcinomatosis, probably spread from breast after 10 years of NED. She is on faslodex.for 3 years only. It seems that there will be some progression as TM are growing. We still wait hovewer there is only one option to follow -chemo. Ibrance is not yet approved by insurance companies i our country. She is ER+ PR+ HER -.
I expect that this private clinic is not for free or how did you get there for cure? It is suitable for any pacient?
We have a meeting with MO in 2 weeks and we will see next step. I am searching for any opportunity.
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maaaki. Your TX is way over my head. I am so interested in what you and others talk about regarding every detail. I figure if I read enough, someday I'll understand. I'm most happy to read that it's working😄. That is just the most amazing thing. I'm happy for you.
Meanwhile, my tumors are still responding to IF. I know I'll have to go on a different TX eventually. The traiblazers, like you and Z are paving the way for many of us.
Z/Lightbulb. I'm so excited to follow all of your adventures in Japan. And most of all, I'm praying for those nasty liver mets to disappear. I hope the SE are not too horrible. 💞
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Lynne. I’m sick to hear about Aurora. I really hate bc! It’s so very sad when we lose another BC sister!
I had scans yesterday and am anxiously awaiting the results. My TMs jumped from 704 to 989 so not expectinggood results. I have a cough and chest heaviness hoping this damned disease hasn’t decided to work it’s way into my lungs. Ugh!!!
Babs
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Babs it's so good to hear from you. I keep wondering about your y90? It's scheduled for March 2 ?
When do you get your results? NO we want no lung mets or anything else that might prevent you from getting y90. I felt kinda like you're describing when I had the flu. Of course, I would not wish that on you either. Those numbers do sound scary.
I HATE CANCER
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Hugs Babs. I am dealing with controlling progression myself. No fun at all until you know something is working. I have back pain in the area of my liver for the first time, so I think my liver is really a mess. Good to hear from you. I know it it is hard for me to write when I don't have things under control (like right now), but we care and just want to know what is going on good or bad.
>Z<
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Z/lightbulb: I was in Japan in 1972 as a high school exchange student for a year, and I remember the freezing Japanese winters! You can go visit Sapporo for the snow monkeys! Eat some of that steaming ramen from the little bars with the skylights open to the night and snowflakes drifting on you- the most delicious thing ever!! And the guys selling baked sweet potatoes for breakfast wrapped in foil from the old style chimney stoves at the shrines (if they still do that)- maybe second most delicious thing ever! I guess I remember travels by the food! But jumping in the steaming hot springs and then rushing out into the snow was fun too.
But first things first- get your blasting good NKC immunotherapy!!!
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Last time I was so excited to go to Japan we got a Japan Rail Pass and moved around the country like the roadrunner. This time we're hanging out in Tokyo the whole time and making rest a priority. It's a better strategy when the priority of the trip is cancer treatment. The Azabu Juban neighborhood is a world in itself and is providing infinite magical moments. Amazing country.
>Z<
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Haven't been posting too much here, but following along.
Mom-I wanted to address your question about creatinine and BUN/ Creat ratio. These are waste products that are eliminated by the kidneys. They are used to monitor kidney function. They back up in the blood stream when kidneys are impaired. Normal for serum creatinine is approx. 0.5-1.2 mg/dl, for serum BUN about 10-26 mg/dl. The ratio is the bun divided by the creat. At 0.35, Dani's creatinine would essentially be normal. She is a small person and this might be her normal. Any slight deviation shows up on lab reports, but is not necessarily pathologically abnormal. I hope this helps you. Sincerely, MJH
P.S. bun stands for "blood urea nitrogen". kind of an old term.
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I had my abraxane/herceptin treatment yesterday at a lower dose. I had to skip the third one last week due to low WBC. I have mets in my liver and I got my liver panel results back this morning. Everything is normal except my AST was 4 points over normal, but down 10 points from my Feb. 1 reading. My albrumin is a bit low. So could this mean that two rounds of abraxane may have started working?
Thank you so much ladies!
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Lisa, it sounds like you have positive improvement on Abraxane. Yay for good results!
Babs, hoping your symptoms are something like an annoying bug going around and not any sort of lung progression. Fingers crossed.
Z, have you been to the convenience stores in Tokyo? I was so impressed about the array of healthy meal options for sale in the equivalent of a 7-11 store! I hope this NKC round takes the liver beasts. Are you doing hyperthermia and some of the other complementary treatments you did before this time around?
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I was diagnosed this morning with liver mets. I was diagnosed Stage IV last February, with bone mets in my spine. 4 months ago my PET was clean. This month, not so much. Bone mets are back in the spine, and now something on the liver. Everyone at the cancer center was giving me hugs, and it felt like OMG, am I going to die in the next 6 months now that it's in my liver?!?
But I'm a little reassured reading your posts here that liver mets are also controllable and that it's not an instant death sentence. I'm going to start on Afinitor and Faslodex in addition to my Zoladex. Anyone else on those? Are they as bad as they sound?
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