How are people with liver mets doing?
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Linda, that is a reasonable question. My onc and I both know that to make a decision based on TMs is not standard. But in my case, the TMs have always been right, even foreshadowing what the scan would show. And with Taxol I had no tumor flare, just a dive in TMs. I had a scan in April, and it was ambiguous. But the TM has been rising so steadily and persistently. Also I have had a return of physical symptoms -- bloating, GERD, and liver pains -- that in the past have correlated with rising TMs and worse scans. I hoped rather than believed Faslodex and Afinitor were working. Because of these things, because I am at an NCCN center, and because I really trust my onc's experience and intuition, I am ready to take her advice. I believe she sees more risk in waiting longer than in going ahead with Xeloda. We gave it four months.
Yes, Zarovka. My onc thinks the cancer is no longer hormone therapy receptive; i.e. it is functionally triple negative. I have a theory. Are you ready? What if it has been that way the whole time because of fake, mutant ER and PR receptors? I start with stage 1, grade 1 and Tamoxifen fails after just three years. Then Taxol chemo causes a dramatic and precipitous drop in TMs and gets me a NEAD scan in just three months. I go a year on Ibrance + letrozole with normal TMs and NEAD scans. Now what if that first year was just the benefit of Taxol and a slowish cancer? I believe the average PFS for Taxol is nine months. Because at the beginning of year 2 on Ibrance + letrozole I feel subtle physical symptoms return at the very same time that TMs begin slowly rising, as they continue to do all through year 2. The slowish cancer grows over this second year because the hormonal therapy actually is not working (according to my theory). The scans eventually show some mildly increased SUV, then finally the lesions that confirm the progression that the TMs foreshadowed. Switch to Faslodex and Afinitor, and over three months there is no improvement in TMs; they just keep steadily rising. Scan after three months shows slightly lower SUV but two out of three lesions increased in size. After four months TMs higher still. See? Maybe hormonal therapy has never actually worked. My prediction is that Xeloda will cause an immediate drop in TMs, with no flare, and an improved, possibly NEAD scan. (Please don't hesitate to say I am -- as my grandmother would say -- full of prunes if you think my theory is nonsense.)
Thank you for setting me thinking about dosing with Xeloda. I'll add that to the list of questions for my long-suffering onc. My dancing looks and feels so good right now, better than ever. Classmates are coming up to me and saying so. (I think getting off letrozole is part of that.) I start to despair when I think of HFS ruining it. I can't just enjoy this for a while? After the years of work I put in to get to this point?
Yes, Linda, we are looking at either a liquid biopsy such as Guardant or Cyndenio (blood test -- maybe that is what you are doing?), or a conventional biopsy and tumor genetics panel right away, before I start Xeloda. This will help us going forward.
Thank you, kaayborg. If you can do it, I can do it. Leftfoot, that is very encouraging to read that X has given you a normal life. And Alissa and Bens Mama, I'm glad to hear you are doing well; I could, too. Ok, I will be strong. Thank you, Lita. I will definitely read the X thread.
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Wow ShetlandPony, those are accurate TMs indeed! And by the way, you're not full of prunes lol! Your theory makes sense to me. My MO thinks I don't respond to hormonal therapy anymore. I had 3 good years on letrozole after which TMs kept on creeping up and up. Switched to Faslodex for 2 short months during which TMs kept on going up and up. I finished my first cycle of Taxol, I'll see if TMs are behaving in mid June. In the meantime, my ALT went down by 60% since starting Taxol. I haven't done the test yet - will bring it up at my next MO appt - I'd rather have that done sooner than later.
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My CT was NED and my tumor marker finally fell to within my normal and just over normal. I can stop holding my breath for awhile. I am relieved.
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Yay leftfoot! Can't get much better than that! Relief for us is like euphoria I believe!
Shetland, my profile is very similar to yours and Faslodex failed me completely. Just an interesting note. So sorry you have to move on again. I feel like I am on the same trajectory. Will start Afinitor tomorrow with the Aromosin I'm already taking. Then we'll see. But if that fails my Onc also says Xeloda next. I completely get your fear about HFS and your dancing. We have lost enough without giving up THE one passion. Best of luck with the new TX Shetland, Ive read many great success stories including many ILC ladies.
kaayborg, I hope you just had a flare or "blip" on the radar on the Gemzar keeps on holding you indefinitely. Is school almost over for you?
Lita, I think you are a walking miracle. With everything you've been through you still come to support us all and do so with lots of good humor and grace.
Z, as always I value your insight.
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Leftfootforward, fantastic news! Now you can relax more and think about other things. I bet you will be getting good news, too, Linda.
Artist, yes, you get it. Thank you for telling me that you have seen Xeloda succeed for ILC. The oncs sure do like Xeloda, it seems. I need to get my head to the place where I am not expecting horrible side effects, where I feel strong and healthy and happy in spite of it all. I've done it before... But that is because I could just keep dancing, just keep dancing...
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Shetland -
How about this ... anti-hormonals have done nothing (basically your theory) AND your excellent self care (exercise, diet) is what has controlled a cancer that is, admittedly, not super aggressive. If that is true, you have to be very careful that the chemo you do doesn't interfere with your lifestyle strategies.
We will never know exactly what is going on, but testing models/theories against what we do know will help us figure out where to push and where not to push. The Hormonals Did Nothing for Shetland Theory does fully explain the continued slow progression over all these years ... and your self care, IMO, explains why it has gone so slowly that the hormonals sometimes appeared to be working, bamboozling even your exceptional onc.
And, yes, this way of looking of things is convincing enough that I am excited that you are moving to Xeloda ... as long as you manage the dose so you can maintain all the lifestyle therapies you have been doing.
I am often full of prunes ... I might just go downstairs and fill up on prunes, now that you mention it.
Leftfoot - exhale, enjoy the summer. Congratulations.
>Z<
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Ha ha ha! I LOVE prunes and have to be careful not to eat too many of them...I can suck them down like candy, handfuls at a time - and then I pay the price later.
For those of you on opioids...they get the job done BIG TIME when you need a little help in the, ahem, elimination department. Much healthier than pill-form softeners.
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Shetland. Sorry for your change in txt but madame X is a great treatment. It's been my longest txtment to date. I hope it's your longest too and works for a VERY long time!
Babs
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Leftfoot - Absolutely love reading your post! Congrats, it put a smile on my face!
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Hello, I was diagnosed with widespread liver mets Oct 2016 (AC chemo) and now on my 6th month Ibrance/letrozole. What is acceptable variance of Ca 15.3 tumor markers?
I know the purpose of TM is to monitor the trend if treatment is working or if there is a progression. I also know that it can pick up dying cancer cells (in the beginning thou?). My current Ca 15.3 is 59 with normal liver labs and no progression on CT scan. At diagnosis the Ca 15.3 was 423. Since January the TM has been 92, 87, 82, 67, 55 and now 59. Maybe this is my new normal? It is on my list of questions on next MO visit.
Sandibeach
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my mom got her scan results. She went from Ned to back to multiple small liver Mets. She got a new oncologist, and he doesn't have time for any of his patients. He didn't even have a room for her. He couldn't tell her how many tumors we're there and he couldn't show it on the computer. Her levels were at 18. He told her that normal biorubin levels are 17. It's very frustrating that we can't get the basic information. He asked her what drug she wanted. Like how is she is supposed to know.
She is going on a carboplatnium based chemo.praying that this will help. I can't stand the thought of not having my mom around. Praying for all you ladies right now.
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Sandibeach, I think that downward trend is excellent. The variation from 55-59 is within a normal variant, so I don't think that should alarm you in itself. If they keep going upward, then you n scan again. But stable scans and mostly dropping TMs....that's a dream scenario for most of us.
Christina, sorry about your mom,hon. Can she get another ONC? Good communication with our doctors is so important to our well being.
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Thank you Stefajoy. Your advice is comforting to me.
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This is my CA-15 and CA 27.29 since diagnosis 1/2016. I saw a reduction in tumor load through July 1016 and since then I have been stable. I believe these are two different tests for the same antigen. I don't know what to make of my markers and I don't know what normal variation is.
>Z<
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Christina, I've been on carboplatin for almost two years now and am doing great. Still have plenty of mets but all is stable. Hoping the same for your mom.
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leftfootforward SOO happy for you. Enjoy!! and breath.
shetland i think you make a lot of sense, from the very little I know, i think the same is true for Dani, while she was on Ibrance/Letrozole her liver mets crept up, to innumerable. Then the new Onco said, hormonal tx is not for her. I always hated playing Casino, if its possible Dani is even more cynical than me, we don't believe in lottery etc...AND NOW she has to play this stupid guessing game, it's all it is.
Kaayborg let's keep hoping, keep a smart eye, and always wish for the best.
Cristina i thought D's onco was cukoo, but your mom's take the cake. Hmmm that's not acceptable, you should tell him so.
Zar i kept my cool, you reigned me in, Dani is the one that wrote a lengthy email and cc me too, so they knew that I am keeping tabs. At the same time my sil sent emails to all CEO's he could find from the Insurance, he told them she better not get worse due to their lack of everything, he got a call back in no time....
Thank you everyone for your concerns, I am very nervous, anxious for this meeting, all her numbers are going wacko, the Alkaline Phosphate was never that high, and the LDH also not so good. And the TM's increased.
We are going late afternoon to Sloan to see what the recommendation for trial is, we are depending a lot on this thing, so she better be smart about recommendations. As is, D got the Xtandi the 1st, YEP, so i told her to find out if maybe the new ppl would tell her to hold off in case they wanna start something new soon, so it's not in her system, and they said yes, wait for the appointment. I must say we had a good laugh, after all this theater about getting the drug, we were oh my if Onco or Ins finds out......so it goes.
The patient from Hell by Stephen Schneider - it's a good read, how he educated himself to try to get the system to work for him. A good dream.
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Sending flowers to cheer us all up and keep us fighting the fight. It looks like my old "Lucille Ball" rose that the gophers destroyed by eating up the roots. Hope this one is a little hardier. We are all gorgeous rose bushes, fighting to stand tall and bloom while cancer tries to eat gnaw our lives away.
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yes I hope your right about carboplatnium. I think the real issue was that she was done chemo at the end of December. Her original oncologist left. She had good results so they wanted to wait... Well she went from January to March with no treatment whatsoever. Then she did weekly taxol. She just had a scan at the end of May. Which was almost 5 months since the first scan. So now there is little tumors everywhere. That idiot couldn't show her or tell her how many. If this next treatment doesn't work, I'll be going with her to the lhsc hospital and demand someone else. This guy is new and he was working at sick kids dealing with more blood disorders. So not sure if he knows about specific breast cancer.
I guess where we live there are so many people with cancer, they cannot keep up. Anyway I hope everyone enjoys this weekend. Hopefully everyone has good weather and good company.
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Mom - you are doing great. Somehow you have to remain the voice of patience and reason despite how they behave. Letting other people blow their top is fine ... makes the docs happy to talk to you.
The wait is frustrating and, yes, possibly dangerous. I am not happy, but you have to hope it was the right thing for Dani.
>Z<
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zarivka- your Ca 27.28 numbers are very similar to mine. My normal is between 37-45.
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Technically, a jump from 37 to 45 is a 20% increase and therefore significant, but I don't believe these tests are that accurate, especially with low numbers.
>Z<
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Z- I agree with you. This is the range of my numbers. But I am happy if they are within this range.
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hi Ladies, hope you have beautiful sunshine wherever you may be. Just home from another cute soccer outing with my little one.
Gosh, I have til this point had such a good mindset but last few weeks have been so foggy
.I will have a ct next tues to see what's going on but my physical symptoms are giving me deja vue and I'm scared sh**less that my drug has stopped. It has been 13 months of a wonderful pain free life. This has been my 3rd line. Have any of you been on more than 3 lines in 2 years? I know i have a lot of options as haven't even touched hormonal meds but my MO was hesitant last year due to how extensive this cancer is.
Anyway, I have been back into my meditation which helps but it's when my stomach gets all hard and the right side swells and then goes totally flatthat it's too hard to ignore. Arghhhhhhhh
I'm sorry if I sound negative...I'm so far from it just need some encouraging words from people who 'get it' .
Filling ourweekend with happy, joyful moments and hope you are too,
Maria
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Bens_Mama,
I have a question for you. Why does your stomach get hard and why does your right side swell and go flat?
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Zarovka, I take your very good point to heart, and will be careful to manage the Xeloda so that I can still exercise, cook, etc. This cancer seems slow, but what scares me is that its slow march seems unstoppable. Imagine a movie scene where a large elephant-like monster keeps plodding along, unfazed by the arrows and stones with which the defending army hits it.
It is hard for me to comment on others' TMs since my only experience is with my own CA 27.39, and we know how differently they can behave for each patient. When mine started rising they went like this: Teens for a year, then 20s, 20s, 30s, 40s, 30s, 30s, 40s, 40s, 50s, 40s, 40s, 40s, 60s, 70s, 100s, 110s, 140s, 160s. They were ahead of the scans.
Bens Mama, many of us find that our good mindset goes out the window as we near a scan date. Be extra-good to yourself, don't criticize yourself for being "negative" or foggy, and realize that once you get your results, the scanxiety will abate and you'll likely feel better. Good for you for turning to your meditation and happy activities with your family.
Babs, thank you for the encouragement. Christina, I really hope there is a way for your mom to get a new onc.
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Maria...I hope you're just having a slight flare.
My last two scans showed a partial collapsed lung, and MO says at this point, it probably won't come back because of cancer. I try not to focus on that. DD is home from college this summer, and it's a good distraction, but when I'm laying in bed at night, that's when it gets hard.
We have to do all we can to keep our heads clear and stave off the panic that can easily overwhelm us. Of course, easier said than done. Every ache and pain makes us question how much time we have left and how long our current TX is going to last.
Meditation and prayer do help, but it never gets any easier.
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thank you ladies! It's also so crazy how our mind can affect us physically. Just came back from a 2 year olds birthday party and was distracted all afternoon then realised....huh...I actually feel great right now! Happy music, children, good friends and loving family can be so healing
@ sandibeach my tummy just sometimes gets so hard- sometimes it's bloating and sometimes not but just gets hard. Then sometimes I get a distended abdomen just over liver area but it pops up and then flattens right out...it's so weird!!! I'm quite thin my enlarged liver is palpable. I probably touch it too much 🙄.
Good night and wishing you all sweet dreams!! My mantra while falling asleep is always 'I am perfect health'. Try to saturate my mind with positive thoughts before sleep....ok lorazepam helps with that ;
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Hello Ladies,
- Just wanted to pop in to officially say "Goodbye and Thank You". Today, we celebrated the wonderful life of my princess (Karen D). It was a beautiful memorial attended by approximately 500 people including family, church family, co-workers, neighbors and other dear friends. We followed that with a great feast in our church gym that was attended by almost 250 people. Luckily, we had just enough food.
I found BCO about a year ago, and you women (and men) were a lifeline for Karen and I. Y'all taught me so much that I was able to use to better advocate for my princess.
I really wanted to share with all of you that I am aware of the emotional toll that many of you experience with the passing of each BCO sister. In fact, that is the reason that Karen did not participate personally.
I feel as though I need to assure all of you that Karen was dealing with an extremely aggressive form of breast cancer, and that we were very grateful for the 15 months that she had after diagnosis. Her liver was riddled with mets at diagnosis. Had she not responded so well to her initial treatment, we may have lost her after only a few months.
So, now my family moves forward with a huge physical void, but with wonderful memories of a true angel on earth who is now our angel in heaven.
I feel as though I have had a bilateral below knee amputation and have been handed a set of prosthetic legs and told, "Here ya go, learn to walk again." This is going to take some time, but walk again I will. Perhaps, with help, I may learn to run again.
Please know that I pray for all the ladies on BCO every night, and will continue to do so. Please pray for my boys and I during this time of transition.
Blessings to each of you,
Louis
P.S. Here's a couple of pictures. One of Karen and our two boys, Max and Mickey and the other of Karen and myself.
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Louis-
Love to you and your boys. Thank you for sharing yours and KDs story with us. You will learn to walk again step by step. I wish that you and your boys did not need to do so. one last flower photo for you in your wife's memory. I will think of you and she every time I see beautiful flowers.
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KD Hugs and prayers from New Mexico this beautiful Sunday morning. You are very strong and KD is with you and the boys ... always.
I am crying looking at the pictures of your lovely family.
>Z<
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