How are people with liver mets doing?
Comments
-
LMWL...I had some progression in my major lumbar mets, and a new area in the ribs, BUT the mets to pancreas, liver, colon, bladder, kidney, abdominal wall etc., remained stable.
Nevertheless, it's still a crap shoot. Went to onc today, still have to process it. More later.
0 -
ShetlandPony - YYYYEEEESSSS! Awesome news!
0 -
Shetland I reread what you wrote, yes, if you could get someone that will watch out for you and keep track of things when the need arise, would be wonderful. Gotta put your trust in someone and that's tough
0 -
Thanks for celebrating with me, babs, momall, Z, and Linda!
Momall, my onc did tell met that tests like Guardant 360 are a high percentage concordant with a tissue biopsy, but they do not give as accurate info or as much info as a conventional biopsy sent for a test like Foundation One. For recent info about the PD-1 inhibitor Keytruda and breast cancer, see Bestbird's ASCO 2017 MBC Recap (and other threads by keyword search).
https://community.breastcancer.org/forum/8/topics/...
0 -
Shetland, that's great info. Best Bird, is terrific, I will look into that. It's that they have more tx and clinical trials it seems for Triple negative these days, i'll read. Thank you very much.
0 -
Shetland, Congrats on Xeloda. I'm on round 4 liver mets are almost completely normal and TMs went 2600 to 200. I was shocked. Let's both hope for a long run on the treatment ❤️
Hugs and happy 4th!!
Anita
0 -
Photogirl-6, Can you tell me how long it took to see positive results from the Xeloda? My MO pulled me off of Xeloda only after 6 weeks bc of rising TM's. She had ordered a CT of the liver....my first one....and were comparing to my PET/CT. She said it looked liked slight progression, but it was hard to tell, since they were comparing the different 2 scans. I don't understand why she took me off soon, and now Im in a crisis where nothing is working.
If any of you other ladies on X can tell me when you saw positive results....this might give me some idea.
Best to everyone,
Robin
0 -
rpoole1962. I started Xeloda in around the second week in May. My liver enzymes were way off the charts and TMs as I said before were higher than ever. My Alk Phos was over 500 a good indicator for liver mets. June 23 I had my first good news. Liver enzymes dropping by 200 points. I had no word on TMs until June 26 that all the values were almost normal. So it must have happened after my third round of two weeks on one week off 1500 mg twice a day. I would honestly get a second opinion because there is so much out there and with liver mets you need to be on something. I'm sure there are other ladies that would feel the same way I do.
Keep me posted and I'll let you know how I make out one my next scan.
Hugs
Anita
0 -
Shetland, not checking in here as much as I used to so my congrats is a bit belated. Still, I am so happy to hear your great news about Xeloda. Hap, hap, happy for you!
0 -
Shetland, Such great news.Still managing to dance and managing all the research. You are pretty amazing,,
Robin. A hard decision to circle back around to a Tx that you Onc has deemed a failure but Onc's do make quick decisions sometimes that don't always add up. Mine did...I sure hope you get back on a goo plan soon.
Lita, Sorry they found progression in bones but personally would rather see stable in my organs so not all bad news by any means. Hope you are managing your pain well and can enjoy the 4th in a great hat!
Glad you are doing well on X too Photogirl. Did I miss the Puffin pictures?
Nice to see you Kaayborg!
0 -
Shetland, wonderful that Xeloda is doing good things for you!!! How are your feet doing on this med so far? I haven't gone back and read all the posts. The volume on this thread makes it hard to keep up sometimes.
Robin, my tumor markers went up for 3 months before they went down on Xeloda. However, it was working all that time because my mets were inactive by my 3-mo PET scan and had shrunk significantly. Increased tumor markers is a hallmark response to Xeloda. It may be worth trying it again. In my experience, comparing a CT to PET doesn't work well. My MO did that once and it was a complete failure, which led to delay in catching progression. I have had to strong-arm my MO into doing PETs only. For me, I need to see whether the mets are active or not, which a CT will not show. Metabolic activity seems to show when a drug starts working or stops working before shrinkage or growth.
0 -
These are for you Artistatheart
! I just got through all the Puffin photos, these two are really cute. They mate for life and they tend to each other. It is so cute. They are about the size of a large potatoe! But so beautiful when in breeding plumage. Hope you enjoy! Anita
0 -
Anita- t almost looks like 2 cartoon birds!!! Great pictures
Babs
0 -
Babs, that's what they remind me of too. Little cartoon characters. Makes me smile when I look at them. Hope you are feeling ok and working on the insurance thing.
Happy July 4th to you,
Anita
0 -
Thank you, Kaayborg, Artist, and JFL! Photogirl/Anita, that's fantastic that you have had such a good and fast response to Xeloda. And it gives me hope that I, too, will have a big drop in TMs along with dormant tumors. Z, yes, side effects under control. My feet and hands are ok so far. I sometimes have redness or a little tingling, but at this point I'm believing that as long as I am careful with them, they will be ok. I'm a little tireder than I was with Afinitor and Faslodex, but still better than Ibrance and letrozole.
Robin, I agree with JFL's comments about scans. Sometimes tumors swell when they are responding to a new treatment, so if they appear bigger on that first CT, you can't necessarily tell whether they have grown or are dying, so to speak. I would want a second opinion on the scans, or at least talk to the radiologist himself/herself. Also try for a PET scan. Maybe JFL would come and strong-arm your onc, too?
Thanks for sharing those amazing puffin photos, Anita.
0 -
Oh Anita! Those are fantastic! What cool looking birds. I envy your ability to travel to such great locations and capture such brilliant photos! Thanks!
Shetland can you tell me what your experience with Afinitor was and how long it lasted for you?
0 -
Briefly, I was on Afinitor for four months (with Faslodex) and had very few side effects. But it did not appear to be working. My (very reliable) TMs continued to rise and my scans were mixed, so I switched to Xeloda and had an immediate drop in TMs. I see you posted on the Afinitor thread, Artist, so I will go there and discuss in more detail.
0 -
Artist interestingly, Afinitor was tough on Dani. It's supposed to be very good, but in her case was just a few weeks.
How do you convince Onco about Pet/Ct. I'd love to hear your ideas.They give you such a song and dance, till now, for years Dani only had Pet/Ct, now that she is in the trial, they do only CT and it's limited to chest, abdomen, pelvis, yes, not enough for her. And certainly would not show if something is in the works. I tried, they promised me, but they did not order it.
Anita, it's so relaxing to look at your pictures.
0 -
Anita, I love the puffins. Where did you take them? We saw some in Maine a few weeks ago but even with my binoculars I didn't get to see them as well as in your photos. I was surprised by their size always believing them to be penguin-sized. Thanks for sharing. So cute they are! Beautiful photography.
0 -
kaayborg, I went to Newfoundland this year to find them, just a few weeks ago. They are in breeding plumage now. They were on a grassy mound with me on another mound divided by water. It was 40mph winds, some of the hardest photography I have done except for strong currents underwater. That is how I learned my photography, the hard way!!! I went to Machis Island to catch a boat to Seal Island last year and the boat broke down, so no Puffins. I was really lucky this year.
Thanks to all of you ladies who liked the Puffins. I try to do things like this to forget that I have Stage 4 BC. It helps me focus and forget my troubles for a little while!. While I was in Botswana, Africa I was staying in the bush camping and driving around and out of the mucky water hole this tiny baby hippo popped up. He opened his mouth and had not teeth and was so curious, but then he went back down and came up again with this head full of stuff. I still laugh everytime I look at it. He was really newborn, still nursing on mama. She wasn't too far away so I had to be careful, didn't need to be charged by a mother hippo. I hope it makes you smile.
Good luck this week for everyone who has scans, blood work, new meds, chemo, etc. I feel so good to be a part of this wonderful group. I'm not sure where I would be without this site!! Hugs to all!! Anita
0 -
Now we have the hat wearing hippo! Too cute.
0 -
That's what I think. It looks like a flowering hat on a baby hippo
0 -
Anita - love the baby hippo! what timing for that shot, wow! I sound like a broken record but you are truly talented! Thanks for sharing!
0 -
Sheesh Anita,I think you should be published in National Geographic or some other nature mag!
0 -
Great shot!
0 -
I waited a long time for him to pop back up. Thank you for the kind comments. These funny shots always make me smile
0 -
Good golly. I just love that hippo. What a beautiful gift you have, Anita. Soul lifted.
0 -
Anita. Thank you again- great picture of a hippo with an ivy hat!!!! So cute!
Babs
0 -
So after dealing with what I thought was a constipation issue for 6 long weeks it turns out unfortunately that I had ascites. Not good news but at least I have an answer and some relief now. I went back and forth between my Onc and ER for that time and they just kept giving me OTC remedies. I called 3 times to let them know the issue was not resolving and I was so uncomfortably bloated I could hardly sit in a chair. To which I kept getting "OH have you tried this" "Have you tried that"? I tried to tell them I had tried everything under the sun at that point and thought the bloating seemed like more than constipation. Finally yesterday I went to a different more local hospital and they immediately ordered a CT and found the ascites, drained me out which was kind of awful but a huge relief. Now I am home and feeling a lot better besides being absolutely exhausted but ANGRY as hell. I feel like my Onc should of at least suggested perhaps the possibility of ascites way back when?????
0 -
Artistatheart, sorry to hear about that. My wife had the same thing happen to her. They told her it was gas and constipation. Gave her all sorts of laxitives to clear her out. Nothing worked. Finally went to emergency and they drained her. She got a prescription diuretic, and an injectable blood thinner. Even had a line installed so we could drain at home. Eventually the ascites slowed and stopped. She has stopped the diuretic, but not the blood thinners.
0
