How are people with liver mets doing?
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Babs - congratulations.
Artist - yay on the new MO.
Lots of good news on this thread. Hope we are on a rolll
>Z<
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Hi All - has anyone done CA27.29 tests from two different labs roughly around the same timeframe and got two different numbers ? In my wife's case it was 150 from Mayo and 8 days later, 177 from Quest Diagnostics.
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Yes, my wife had her tumor markers tested same day, same drawing, by two different hospitals and it came out different. They said it was the different equipment that made the difference. Her Onc disregarded the numbers from the other test. I can't remember why they split the blood up and sent it to two different hospitals. We have a weird medical system here. I think it was that they wanted some test done it that they don't do, and the other lab did the entire lists of tests. We only got the second set of results when we went to that hospital for an emergency.
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Thanks Huband11. Do you remember how much off the two results were from each other ? I was just little startled to see a 25+ points difference though our new MO warned us that there will be a variance.
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Had my abdominal US this morning and imaging shows I'm having a good response to Taxol with some little improvement in liver mets. Told radiologist about the new sharp pains I'm having in right abdomen and back but imaging does not explain why I'm having this pain. I will just assume that it's a tumor flare and Taxol is killing those buggers!
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Can't remember the numbers, but it was significantly different, like 10 percent or more, so much that we wondered which one was right at the time. Was she getting better or worse we wondered? But it makes sense to only compare apples with apples.
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great news LindaE54 so pleased taxol is working for you.
I just finished with taxol as it totally failed me, I have growing and new liver mets. I'm quite down because it is my first treatment after stage iv diagnosis, just hoping the next treatment works better.
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Babs such great news! I am so happy for you. Glad for your new MO with a plan, too, Artist. Celebrated 2 years of mets dx yesterday and still going strong. Wishing this stability to last forever.
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LindaE, WOOHOO for the good news. I love the words "good response" and improvement". I vote for tumor flare as the reason for your recent pain. It sounds like a reasonable explanation. Do you have medication that is effective for the pain?
Blume, I am sorry that taxol did not work for you. Do you know what your new treatment plan will be? I can certainly understand why you are feeling down right now. We all know how you feel because many of us have also experienced progression at some point in our treatment, but there are many other treatment options available. I have said a prayer that your next line of treatment is one that works for you. I hope that you will soon be telling us that your new treatment is smashing those mets into oblivion.
Kaayborg, Congratulations for reaching that 2 year milestone. I am doing a happy dance for you. May you continuing going strong for many more years, and may I be here to repeat that dance for you.
Lynne
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Kayyborg good for you. Are you still on Carboplatin? How is your summer sans little ones coming along? And your fam?
Blume sorry for the disappointment, what's next?
Babs how are you feeling?
Husband yes, Canada gotta get with the program. F1 is paid with Ins in the States.
Guys, we did get the results, but the whole thing got very messed up. Onco called even though she is on vacation, she said I should not be alarmed when I see the results, toomany things going on, but basically they are treating it as not much progression, so they are happy about that. Yep, these days that's how it goes. One is happy with NOT MUCH progression. So continue on the trial for another few weeks, and then scans again, although she said if Dani would not be on the trial she would be more aggressive treating the liver. Basically, it's much the same, some got a bit higher SUV and few got less. what got messed up is that they usually do CT's but I wanted PET/CT because it was time to see the whole picture for Dani, and they have a hard time reading and comparing. Crazy, also the fact that it was done on a different place, never mind they told us it would be ok. When it goes wrong it just does....
I asked for the Ca27.29 she says it does not really matter, because they really go by scans. Weird. But ok. I'll pick my battles.
Foundation One came back with many mutations, most don't have accessible treatments, but some clinical trials. I have to look through and study it! And the biopsy came back with Dani still being Triple Positive. A lot going on.
Now I am onto entertaining the little ones.
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mom - glad you got the results back. I will sort of agree with the view expressed by Dani's MO. With metastatic disease, eventual progression is inevitable, but the key is to monitor how much damage the progression is really doing and switch treatment only when you have squeezed out the max amount of time from the current treatment. That lets you buy time to get the next great treatment in development right now. Also, maybe during the next scan you will see perfectly stable disease.
Since Dani is getting pretty frequent scans, I would also agree that CA27.29 probably won't matter so much for her.
Hoping that you find some promising trial that benefits from Dani's mutations. Praying for you all.
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Momall - What a melting pot but as usual you're on top of things. Clinical trials have very strict protocols and would not keep Dani in the study if she didn't meet their standards.
Blume - I know how discouraging it is to learn that a tx failed us. Prior to Taxol, I was on Faslodex for 3 months and had a lot of progression on it. I'm sorry you're going through this, but as Lynne says, there are other tx available. Hang in there and keep us posted.
Kaaborg - Congrats on 2 years and stability.
Lynne - Still enjoying your vacation? Oh yes, I have an arsenal of pain meds.
Babs - Happy to hear you are accepted in the clinical trial!
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Congrats to you too, Linda. Mom, I am continuing my love affair with Carbo. I know he'll eventually dump me but enjoying while it lasts. And summer is wonderful...trying not to think about its end either.
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many thanks 50sgirl, Mom and Linda your positive words helped and after meeting with my onc today to get the treatment plan I feel better still. I am onto Ibrance / letrozole, just picked up the prescription so I will start taking tonight.
Mom I do hope the trial improves the situation for Dani by the next scan, as they are keeping her on the trial there has to be a good chance.
Hope everyone else is having a good day
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Blume - so happy to hear you have a good tx plan in place! There is a thread for Ibrance/Letrozole, unfortunately my computer skills are not good enough to insert the link. It will give you a wealth of info.
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maybe thanks Linda, will go check that thread out
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That's what I've been hearing. It does make me feel better. Onco was optimistic, it's just hard when you see even new things appear, and we have to ignore it, but we do need to give it a chance, Onco also said that, she seemed to care. Thank you everyone. It does make it easier when we hear from you, your take on things. Letmywifelive yes, i need to concentrate on this little Bible (it's that thick and precious) i got from Foundation One.
Blume good for you, definitely look into that thread.
LindaE sweetie how are you feeling, any better?
Kayybor enjoy!
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Momall - so sweet of you to check on me. I'm well, just working on controlling the pain.
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Thank you all for your congrats and support!!!
So busy with lots of appointments for the study- blood tests, eye exam, interventional radiologist, meeting with dr to sign, Ct scan, biopsy etc. I'm so lucky my boss is so supportive and understanding.
Kaaborg so glad the Carbo is still working for you!!!
Bab
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Hi Babs, so happy for you getting on this trial! Excited to hear how it goes! I have a good feeling about it! Hugs!
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Babs WOW sounds like you are really busy. Which hospital is the study being done? I know you've probably written all the details about the trial. I noticed you said you are meeting with an IR, does that mean you might be evaluated for local treatment to liver? Like y90 or sbrt? I'm two months out from y90.
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BabsI am so happy for you
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Babs yeah I know, that took a lot of time when Dani went, yes, you are lucky you have an understanding boss.
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Yeah kaayborg, So glad the carbo is hanging in there!
babs, I've been to 12 apps or procedures in the last 2 1/2 weeks so I totally sympathize! (Of course I did get a nice new Onc out of that so well worth it. Hope you have a good book!
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Kaayborg, Congrats on 2 years. That really gives us hope!! I'm almost one year out since I got diagnosed Stage 4. I hope Xeloda is my ticket for a while. No SE and TMs are dropping fast.
Letmywife, I had TMs taken a week apart. I was so excited when my first result was 12 but it was too good to be true. Went to my MO the next week and he repeated the blood work and my new test showed 92 TM. That was a huge drop since I've been on Xeloda since the last normal test was 272. There have been times when the testing isn't right and he always does it again if he feels something isn't right.
LindaE, hope you are doing ok. Thinking of you!!
Artist, glad you have a new MO. I'm so glad I have my local MO but just heard he's retiring so I don't know who I'll get. Ar least I have my trump card. My MO at Dana Farber always looks over them. I feel so fortunate to have that peace of mind!
Have a great weekend everyone!
Anita
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Anita - I'd hate to have to change MO - I hope you find the right match. I'm doing better, seeing MO next week and will probably have results of CT scan and bone scan, see what's brewing in those. But the most important for me was the abdo US for liver and am happy with the results so far.
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Aside from all the stuff, there is this new verbiage new nodule in the parcoli gutter? ever learned that in biology class? it's near the colon, so just something new to worry about.
Anita, you prob can't go around at Dana Farber. Guess what? Dani's Onco - she is considered big time researcher, is leaving her practice, she is going to Sloan also, so now we are in a quandary, because old Onco was allright, but this new one is just fine, and if was good that we had the former one looking over at D and the new one with the new ideas. Former Onco will only be there on and off the rest of the time she will be in another location altogether, she said it was an offer she could not refuse, hmm, yeah, very exciting. Not.
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Momall, what a drag to have to find a new MO, but we have to realize our docs aren't our life-long buddies like in the 50s and 60s when I grew up. My family had two docs, the pediatrician and my parents doc, and one dentist. They knew all our names, would yak about golf, travel, etc., just like friends b4 they did the exam/procedure. We went to them exclusively until they retired. Mom's doc even pierced my ears for me!
Nowadays, drs are just employees in the cancer machine. When/if they get a better offer at another facility, of course they're gonna take it...more money, more prestige, another bullet on the resume, who wouldn't?
Obviously that doesn't make it any easier on us. We're just numbers in the system, and we have to put up with a certain amount of disruption and change in order to get any type of treatment.
Hope you can find another decent MO.
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Oh Lita, so sad but true! Same for any kind of Dr's. Nothing worse then finding someone you finally click with to have them leave...
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I just had my first progression, and wow, is it tough
I had been on letrozole alone for about a year, now on to faslodex and Ibrance. Interested to see how my body manges the Ibrance - I had been on one of the monaleesa trials and had an autoimmune reaction to the ribociclib. My MO is convinced that palbo is different enough than ribo to avoid those issue again, but he plans to watch very closely. I still have plans to run a half marathon in October - I'm halfway through my training plan! I think I've tricked myself into thinking if I can run a half marathon, I can't be too sick. Right?!? :
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