How are people with liver mets doing?
Comments
-
Hi all,
An important paper came out in Nature today, showing that breast cancer mets depend strongly on pyruvate, more than glucose, especially for metastasis. There's quite a bit of work in this area in the literature, all of it showing similar results, mets to liver and lung very much depend on pyruvate. There are some pyruvate transport inhibitors, but I'm not sure anything in clinical trials.
https://www.nature.com/articles/s41586-019-0977-x
0 -
Cure-ious- very interesting article- little above my technical reading level but certainly appreciate you sharing it. So very interested in learning more and about potential inhibitors.
0 -
Hi Ann, I was just reading a bit about a pyruvate transport inhibitor used in the lab, called UK5099, but all the news is about how it helps re-grow hair! Wouldn't that be helpful!!
0 -
Cure ious. No that was not the fashion show I was in. Mine was in conjunction with designer Samina Mogul. It's called SMGlobal Catwalk NYC 2019. The non profit foundation I am with is called Say Yes to Hope. It's more about spreading hope to this cancer patients who have any cancer that has metastasized to the liver, it's very much about y90 Sir spheres microspheres as a life changing treatment for liver mets. We have mostly breast and colon cancer patients. Survivor Models travel with Samina in numerous cities in the U.S. and have for about seven years.Suzanne Lindley is the Founder.
0 -
Hi I am new here, diagnosed stage 4 in October 18 with one liver met. Sternum lit up on PET scan that has not been confirmed as met but is definitely a fracture. I had liver lesion ablated in December and have just got results, another met is showing up. The liver specialist has said that as the met has shown up so soon after the ablation that chemo is required to treat the whole body. I am waiting for a call from the hospital and then oncologist appointment. I feel scared and anxious about more chemo. Any thoughts on questions for oncologist
0 -
Hi Yvette. I understand how scary it can be but there are many good options for you. My diagnosis was similar to yours. I was diagnosed with one small liver met one year ago. I started systemic treatment right away. I am on Ibrance/Femara. I also had the liver met ablated. My onco and my second opinion onco both said that it's very rare to only have one liver met. In most cases, once the breast cancer has spread to the liver, the liver already has more micro mets that are too small to see on a scan at the time or that more mets will happen overtime. Thus, it was recommenced that I start Ibrance/Femara right away. One year later, my liver is doing very well. The ablation took care of the one liver met. I had 2-3 very small liver mets show up on my first 3 month scan follow-up visit. But we gave the Ibrance/Femara time to work. My liver has been clear of mets since then (my liver is scanned every 3 months). I am glad I had the ablation which removed the 1 liver met and the Ibrance/Femara which has worked on the rest of my liver.
I was on Tamoxifen when I got my liver met. It looks like you recently started with Tamoxifen? It also looks like we have similar situations, both Er positive, HR negative, grade 3. (You can add this and your prior treatments to your bio to help us help you
If the Tamoxifen isn't working for you, there are other good options. It is very scary at first but one year after diagnosis, I am still working full-time and have a good quality of life. I do get very fatigued at times and experience annoying side effects but they do not prevent me from enjoying my life.Did they biopsy your tumor since your stage 4 diagnosis? If not, you can ask for a new biopsy to determine if the receptor status may have changed since you had your original tumor. There are targeted treatment options that can be easier than chemo. If you MO recommends starting with a chemo that doesn't feel right for you, I would highly suggest a second opinion right away. You have many options right now and you need to feel comfortable with your MO. ~Kar
0 -
Hi, thank you for your response. My oncologist has been talking of Xeloda. I am not very happy with him as I find him to be very negative, I have asked about changing oncologists and it is an option but don't know if I will be jumping out of the frying pan into the fire! How often and how do you get your treatment? I am currently on Tamoxifen, will fill out medical history when I have looked up dates. Mets have not been biopsies and sternum is still an uncertainty.
0 -
you will be so happy to get a second opinion, preferably with someone who specializes in breast and at a major hospital, and ask them directly- why not inactivate ovaries and move to Ibrance-Femara (which is much stronger than tamoxifen) and save the chemo for later?!
0 -
Yvette - I agree with Cure-ious about everything she wrote and she is very knowledgable. Don't second guess whether you should get a second opinion. Hopefully you can find a new MO right away. Having a negative doctor is not what you need and with the info you have shared, starting with Xeloda doesn't sound right. Ibrance/Femara is in oral form. It is much easier for me than my initial chemo when I was stage 2. I look forward to hearing what your second opinion MO thinks.
Kar0 -
Just curious, but does anyone know how and when liver mets can cause toxicity that can make people have personality changes? I've heard of it happening. I would assume that it would happen at the very last. I also assume that the bilirubin would be high and other labs would be out of range, true?
I'm doing well on Xeloda. As soon as I got off the foul tasting antibiotics, I stopped feeling nauseous. PTL. My only SE now is loose stools. I say I'm doing well but I am anxious about my next scans. I think they will be in April, the last one was in December showing growing mets in liver, lung and chest. Plus, I've had no effective treatment from September to February. I started X ten days ago. Afinitor failed in five weeks because of allergic type SE too horrible to tolerate. Therefore, I wonder what's happening and I want to give X time to work. Normal anxiety for this DX we've had to learn how to deal with.
Praying for all liver mets ladies.
0 -
I pray for you, too, Grannax. Miss you on the Ibrance thread. Maybe your next line after Xeloda will be Alpelisib and never have to revisit Afinitor again. You never know..you might be on Xeloda long enough to set a new record.
0 -
I would love that, sandibeach. I've never heard of that TX what is it? Pill or IV. My MO is saying Abraxane
Next. I disagree. I have wishy washed around for far too long about changing MO. I don't trust her, I don't like her, we are not good for each other. I've just made the decision to seek out a new one at ITS A in Dallas. It's not convenient, it's huge but I should be with a BC specialist at a state of the art facility. I'm not where I'm supposed to be.
The epiphany came this morning. My family is suffering because not being with an MO I trust is making me crazy and affecting my behavior. It has affected them but they don't know why. They want me to stay with her because of the convenience. I was put up with her crap because I didn't want to inconvenience my kids because they are so busy.
So I'm writing to my PCP to help me find an MO at ITS A. She has already offered to do that. She knows I need one who is a good match. One that believes it's OK for patients to be knowledgeable and literate. The one I have hates her patients to read. Can you believe that?!?!
0 -
For some reason the edit button won't work. The new one will be at UTSW in Dallas.
0 -
Grannax2, I mostly just read than post...but I have been having a bad day (just with “stuff" and waiting, I'm happy with my doctors). But it makes me so glad you have made this decision. You have uplifted my spirits with your bravery. Congratulations. And thank you for making my day
0 -
grannax, Alpelisib is a new drug (pill) that will be getting fda approval this summer. There is a particular mutation that it works quite well for. I'm still waiting for my report to see if I'll qualify. I know someone out there here knows the mutation. Starts with a P, I think
0 -
Grannax, here's a thread for it :
https://community.breastcancer.org/forum/8/topics/...
I follow it as a 'favorite' topic.
0 -
Good for you, Grannax! And, as far as UTSW being inconvenient and huge, I've been pleasantly surprised at how warm and personal my experience has been at MD Anderson's huge main campus, plus I love the cool perks like valet parking. I had been treated for three years at a small satellite campus on Houston's west side and thought that the main campus would be impersonal, but I've had such a good experience there. Get the MO you deserve and don't look back!
0 -
Grannax2..the Alpelisib is soon to be FDA approved per the rumor mill. Apparently, when paired with Faslodex, it is showing longer PFS than with Faslodex alone..but only with those with PI3K mutation. It is along the same pathway as Afinitor, but further "up the chain".
Hope I got that right as I am not sitting in front of my notes.
0 -
HI Yvette,
I agree with Kar on your getting a biopsy to see if your tumor receptor has changed. Mine did. From HR very positive to barely positive so some TX didn't work very well. I was on Xeloda and it was minimal SEs. It's a pill which keeps life very manageable. I had to switch though because my new cancer had changed the receptor. So I recommend Xeloda and also a second opinion. It's need to be comfortable with your oncologist.
Best wishes,
Karen
0 -
Grann excellent move getting a new oncologist. It really causes a lot of anxiety when we feel they are not doing the best for us, and just that alone is not healthy at all.
I think you are talking about hepatic encephalopathy, but I don't know much about it as far as far as numbers and what not. I THINK it's kind of an emergency situation where you need to be in the hospital if you have it. Not sure though.
0 -
Kayla Thank you for your kind words. I need to hear the encouragement.
Kattysmith. I've been a patient at MDAnderson for many years. You are so right it feels like family to me in spite of it being huge. I expect UTSW to be a smaller version of MD A. I'm still feeling firm on my decision. Even though there are many unknowns, I'm doing it. Monday will be the first possible day to start the ball rolling.
Info on Alp whatever sounds interesting. But I don't have that mutation. I have ESR1.
HLB. I have to feel safe. I have not felt safe with the one I have. I let her talk me into taking AA against my gut instincts. I will never doubt my gut again. I know I'm not in the right place. There's not a worst thing that can happen if I fire her, she is the worst thing that could happen. Anyone at UTSW has to be better for me, I can only go towards the best thing that could happen now.
Thanks for all the encouragement.
0 -
RIP Zarovka...you will be missed
0 -
I just read about Zarovka on Inspire. I'm so very sad. She was truly an inspiration. Prayers for her family.
0 -
so very sad and painful 🖤
0 -
First day home from hospital, had pleurex catheter placed last Wednesday had terrible pain on Thursday. Husband brought me to the ER stayed until last night. AST 148 ALT 54 ALK PHOS 150 Bilirubin 1.9. I’m full of ascites which came back positive for malignancy. VNA coming soon to drain catheter. I feel like such a baby, I’m freaking out in tears not sure what to think. Had one dose of Eribulin last Tuesday. Due for one tomorrow but not sure if blood work will allow. Anyone coming back from liver mets with ascites? Does this mean it’s peritoneal carcinomatosis? I’m sure spelling is off on that last one . Thank you ladies and men for sharing with me. I’m scared -Jill
0 -
Really, Z is gone? How sad and unbelievable! Prayers for her family.
0 -
Griff, I had a small amount of ascites which I still don't have a definite dx for, but it cleared up after one treatment of abraxane. Sorry you are dealing with this, it's certainly scary. I also did a lot of fresh lemons, citrus fruits, watermelon, baking soda. All good for healing the liver but the abraxane is what got rid of it fast. I hope they can find a solution.
0 -
Cross-posted, not sure where the "right" place to put this questions is.
I'm wondering if anyone has experience with PD1/PDL1 drugs with EGFR or MDM2 mutations?
Both EGFR and (particularly) MDM2 mutations are linked to PD1/PDL1 failure and hyper progression. I found an article that has more details: http://clincancerres.aacrjournals.org/content/23/1...
I'm curious if anyone has any experience with immunotherapy and these mutations? thanks!
0 -
I am shocked and saddened to hear about Zarovka. We missed her so much here when she stopped posting regularly a while back and all were waiting for the gift of a post from her every so often. My thoughts and prayers are with her family. Still can't believe it.
0 -
grrifff, so sorry to hear of your issues with ascites. I think having issues in the liver is enough to cause the ascities....but it's no guarantee, I think abd mets would have shown up on CT or MRI, unless you are ILC. I think too the chemo can really make a difference.
thrivingmam, I don't have any of those mutations....and I don't know if I have pd-l1.....but did initially have great response to keytruda. I also don't think I can be considered to have a "hyper-progression"
Well, I've bee so discouraged I haven't been able to post for a while (or don't recall posting). I was on Keytruda and Halaven from June-Dec. with several months off due to autoimmune toxicities. First break was Aug. with acute kidney injury that responded very quickly with high dose steriods. When I was able to get the prednisone down to under 10mg (10 weeks) I was able to restart the trial (after seeing super specialist at Dana Farber). Then I was on until Dec. and developed grade 2 colitis, which again quickly resolved with steriods. An earlier CT in Aug. showed liver met resolving and no others. At this point while off in OCT, I had a CT and they found "soft tissue mets" in abd and chest., unusual for IDC. Found one lymph node that was removed for biospy on my upper medial arm, within 2-3 weeks saw it grow from slight questionable area to ~1 cm. Was taken off trial and am now getting Gem/Carb and other lymph nodes I could feel growing have now almost disappeared. This treatment is harder than the keytruda and halaven!
0
