How are people with liver mets doing?
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I got into the trial. I have a new complicated journey ahead but I am thankful.
Happy thanksgiving everyone.
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left- wishing you great success with few side effects!
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Good luck left, and happy Thanksgiving to you and your family
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Leftfoot, that’s great news!
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Great news, LFF and wishing you every bit of success and good QOL along the way. Clinical trials are a little cray cray and intense at first but after a while the schedule gets much more palatable.
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LFF. Awesome, keep us updated. Praying it works!
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Great news, Left!
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BevJen, I am a paramedic and started with the my community volunteer service at $.25/hour in 1992 (WI). It is very hard to keep the volunteer service going and I'm sure they have their issues like we do. I always say I'm paving my way to heaven. Please thank your son for what he is doing and sticking it out. Great job! Lisa
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Well I am not sure where to post this..but I am fairly alarmed right now....my ND did extensive blood work and some of it came back and a tumor marker for Pancreatic Cancer CA 19-9 came back "high" for me....
I sent a note to my MO but I am definitely worried. I go for CT Scans (that had already been scheduled weeks ago for me starting Xeloda) on Wednsday....
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Nicole, is it possible the cryoablation is responsabile for the out of wack numbers? maybe the two are related....and it's something that will change as your body heals
Mos are in San Antonio....at least mine is there already...
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Nicole, sorry to hear about the marker showing as high. I don’t know the term ND? My feeling would be like yours, ask MO what she/he thinks of that, and what happens next, if something needs to happen soon. I have a friend in a similar situation right now with an alarming tumor marker and her MO wanted to wait and retest next month. Friend is quite nervous and got her MO to order a CT scan for this week. Sending you my best positive vibes!
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Nicole,
Frisky makes a good point. My tumor markers were higher after my microwave ablation, and they have gradually been coming down. My MO told me that your numbers can be screwy after such a procedure, and you're not that far out from it (plus you also had other surgery). A lot of tumor markers show inflammation.
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Sorry for the panic, Nicole. We didn't want to get on this ride. Hang on and let them scan. I had CA 19.9 checked when I got obstructive jaundice in July, caused by the bile duct stricture. I feared bile duct cancer (cholangiocarcinoma) because it is harder to treat successfully than bc. But I have been biopsied and scanned more than once using various methods, and apparently do not have any other cancer than metastatic breast cancer. Simply the location of my problem caused that marker to rise. CA 19.9 says something may be going on in certain areas, but pancreatic cancer is not the only thing that can be going on. So yeah, maybe the cryoablation made the marker rise.
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Thank you ladies... Frisky I wonder if my MO is there too...hrmmm... bc I didn't get a reply from her and she ALWAYS replies like same day. The ND (Natropathic) got back to me and said this (which is similar about inflammation to what BEV said) :
I saw that and I think it's most likely related to the current disease, not something new.Cancers do not always play by the rules and sometimes breast cancer produces enzymes from the pancreas or vice versa.Also, CA19-9 can be elevated from inflammation, not cancer, so it's not diagnostic.
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Nicole, The truth is that you're starting a new treatment already, you're getting scanned, and these doctors no matter how hard they try are bound by well-known limitations of what is known and possible...
based on BevJen experience and nurse explanation the likelihood of inflammation and reaction to the procedure is likely...but no matter what it turns out to be let's hope that the X takes care of everything! Keep us posted...on any new developments
Oh...and if I were in your shoes I would start taking some digestive enzymes before eating till those levels are back to normal....it will ensure your food, supplements and medications are absorbed...it will reduce the stress on your pancreas...
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Frisky do you mean a probiotic? I just started last week taking a 60 billion one ...is that different than digestive enzymes? Can you send me a link for example and do I need to take the probiotic if I take that? I was taking the probiotic b/c of the X and because I will be starting the Doxy soon...
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The probiotics are good. I take those too, but this is what I've been using for years as prescribed by my functional doctor....my stool is PERFECT like Beethoven 9th symphony.
But when I don't take them...my toilet turns into an Anything Goes, Cole Porter sort of poorly digested loose sort of thing....big difference! And let's face it....anybody on cancer medications has, without any doubts, a highly compromised and disfunctional digestive system....and that doesn't help...
it might resolve your constipation as well...start with a very small container to see if they agree with you...I take two caps before each and every meal..
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My mother stage 4 she have ca 15.3 very veryy high its 2432 ...................please any experience here any one have a very high ca15.3 and he s down like my mother she have 72 years and she can t take chimo she take armosin and she have 2 spot in his liver 1.5 mll any experience please
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ZZZAAA, if Aromasin has stopped working, some possibilities that are not chemo would be letrozole (Femara) or fulvestrant (Faslodex) alone or with palbociclib (Ibrance), abemaciclib (Verzenio), or ribociclib (Kisqali). The oncologist may prefer Faslodex as it can work even when an aromatase inhibitor like aromasin or letrozole does not. Also, there is a pill chemo that for most people has less severe side effects than the IV chemos. It can be a fairly easy treatment as long as the dosage is not too high. It is called capecitabine (Xeloda). Can you and your mom ask her doctor about these medications?
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Thanks Frisky I cannot use that product as it is from Pigs..I do not have anything with pork/pigs. (not just because of cancer) I am going to search amazon though for pancreatic enzymes. Then on to see if anything clashes with what I already take...ughhh!!! I just hope it doesn't make me consitpated. My poop this morning was as you said "like Beethoven's 9th Symphony"... I came out of the bathroom and said THANK YOU LORD!!! (I am 100% serious) lol I have been taking Miralax everyday though however it wasn't like this morning so I am thinking that the Xeloda might have softened things up......
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There is nothing like a good poop and mine are usually beautiful to behold!
Nicole, I agree with the others that your high marker could be inflammation, so try not to panic. I'm glad that your scan is so soon and that you've started on X. I start my third cycle tomorrow and so far the SEs have been tolerable. Keeping my fingers crossed for your scan and your well-being.
Best, Katty
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This just came in from my Oncologist.....
Hi Nicole,
Tumor markers are not good for screening tests and therefore are really not recommended to be tested unless you are actively following patients for that particular cancer. Therefore CA 19-9 is really only tested in patients with metastatic pancreas cancer and biliary cancers. The reason we don't test them is because there are false positives and false negatives and therefore it is recommended not to screen the population for this. They have been shown to be very inaccurate. So no, it doesn't mean the cancer is in the pancreas or that you have pancreatic cancer. Your scans are clean there. It may be due to the liver involvement with the cancer, but it doesn't change our management and really we shouldn't be doing them. That goes for any other tumor makers she draws - we don't need them and shouldn't be testing for them.
Hope this helps,Well,....that is a little bit of a relief...
THANKS KATTY!!!
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Nicole... they make pancreas glandular from beef as well...nothing like beautiful looking stool in the morning...achieved without any strains or mad dashing...
Glad your MO agreed with my early assessment...my office will remain open while they're all drinking and cavorting in San Antonio....
Think about it...they are away from their husbands, hospitals and dying patients...they must be having a ball!
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Oh, that's wonderful and reassuring news, Nicole!
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Hi All -
I have been busy...dealing with progression and change in treatment plan...
Looks like I will be starting the IMMU - 132 phase III trial next Monday. There is 50/50 chance I will be assigned to the study drug IMMU - 132. If not, I will start on Halaven, still as a part of the study.
New scans and many tests are done. Only 1 question remains - if I have to have another liver biopsy or not. This late into this week, I think it will not be needed.
I am still numb since this progression news...so I am doing great. I even stayed calm (for the most part) when I was told I no longer have any insurance the day before Thanksgiving.
Another gift from the Army, who takes such good care of its Soldiers.
It was an administrative error and has been corrected. Insurance still in place.
Hoping everyone had a good Thanksgiving and continues to stay strong in the face of our shared adversities.
Gumdoctor
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What?!?! The Army does not take care of you as well as we think they should, but I'm glad yours was reinstated. One crazy surprise after another.
Sure hope this study works for you. I don't know what I will be on next, probably January. I thought my MO said capecitabine but that is not right because cape is Xeloda. X just failed after only 3 months. Neither my son nor I remember what MO actually mentioned at our visit in early November. It was the one chemo I have not already taken. Brain fog. UGH
Yes, I had a good Thanksgiving with BFF and her clan. Then on Sunday, I got to spend some time with my grandchildren. We saw Frozen II. There was one a song we all can easily connect with. It had the phrase " Next rIght thing" in it. I'm not sure that's the title.
The problem is, we don't always know if what were doing is the next right thing. So, I'm going to continue saying First things first. It helps me to keep moving forward.💞
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sorry to here of your complication with insurance Gumdoctor but glad you got it worked out. I have to say I love Tricare they have been amazing with all this.
Grannax..I hope I dont have your experience with Xeloda......
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Prayers from here to all.
Hugs.
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Just want to drop in and say I have so much to be thankful for especially the way I find peace and support in this group. Wishing everyone a happy holiday with there friends and loved ones. I will continue to pray over this special group as we share in the seaso💞
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Oh man, Gumdoctor. This progression business has got to stop. And more insurance scares! Sheesh. I hope you get into the IMMU arm of the trial.
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