1. < Pancreatic Cancer

Interesting case of new lesions, pain, but decreasing CA19-9

Posted by marienewland @mnewland99, Dec 23, 2024

Yesterday I went to ER with intense and acute pain in my right side. After CT&US it was found that my previous lesion in liver of 0.9cm which received SBRT radiation in October was now 4x5.7 cm and presented itself as “vague” or “subtle” inferior hepatic lesion but couldn’t be distinguished on US. I had a US because a CT showed possible edema in gallbladder. Also, a new 2.4cm lesion occurred next to the existing lesion. I just received news last Friday that my CA19-9 had decreased from 16 2 weeks ago to 8. This is weird as my tumor marker has been a very good indicator for me in the past. My monocytes yesterday were quite elevated from 2 weeks ago. My oncologist has already gone out of country for holidays and won’t be back for a few weeks. I plan to get a PET scan to verify any new cancerous activity. Also, I might be taking chemo this week and adding cisplatin back into my chemo mix if PET scan is positive. Does this scenario make sense to anyone? My husband thinks maybe the radiation I received in October may have te ei ed scarring and that’s what the scan shows as subtle or vague. But the intense doesn’t in my mind validate his guess.

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joiedevivre | @joiedevivre | Dec 27, 2024
In reply to @mnewland99 "That’s the confusing part as markers even decrease by 50%. I was always told that CA19-9..." + (show)
@mnewland99

That’s the confusing part as markers even decrease by 50%. I was always told that CA19-9 also reflects inflammation in benign situations.

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Inflammation is better news. I’m sorry abt the pain. But if your markers have always been a good indicator and they are low now, let’s be hopeful.

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1 reply
marienewland | @mnewland99 | Dec 28, 2024
In reply to @joiedevivre "Inflammation is better news. I’m sorry abt the pain. But if your markers have always been..." + (show)
@joiedevivre

Inflammation is better news. I’m sorry abt the pain. But if your markers have always been a good indicator and they are low now, let’s be hopeful.

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Thank you. Pain is still there, but much less severe than when it started. Bless you and your husband.

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marienewland | @mnewland99 | Dec 30, 2024

Just returned from meeting g with radiologist who did my MRIdean radiation and he thinks my growth is just inflammation since the growth is in same segment as lesion radiated addition to fact that my marker is very low at “8” and it’s decreasing. I hope he’s right!!! Harvard educated so I do have a lot of confidence in him. Problems that led up to this: Hoag radiologists that read my CT and PET scans noted I was under chemo and radiation treatment, however they didn’t factor that “growth”COULD actually be from inflammation post radiation; this should have been mentioned ?? Of course follow up with radiation oncologist should have been mentioned. In addition, I got the idea if inflammation from radiation resolving itself within 3 weeks of last rad treatment (October 15) from AI internet search. My radiation oncologist said it can take up to 6 months; so a word of caution when doing those searches as AI posts the most populous answers.
and @markymarkfl maybe keep the cisplatin out!!

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3 replies
joiedevivre | @joiedevivre | Dec 30, 2024
In reply to @mnewland99 "Just returned from meeting g with radiologist who did my MRIdean radiation and he thinks my..." + (show)
@mnewland99

Just returned from meeting g with radiologist who did my MRIdean radiation and he thinks my growth is just inflammation since the growth is in same segment as lesion radiated addition to fact that my marker is very low at “8” and it’s decreasing. I hope he’s right!!! Harvard educated so I do have a lot of confidence in him. Problems that led up to this: Hoag radiologists that read my CT and PET scans noted I was under chemo and radiation treatment, however they didn’t factor that “growth”COULD actually be from inflammation post radiation; this should have been mentioned ?? Of course follow up with radiation oncologist should have been mentioned. In addition, I got the idea if inflammation from radiation resolving itself within 3 weeks of last rad treatment (October 15) from AI internet search. My radiation oncologist said it can take up to 6 months; so a word of caution when doing those searches as AI posts the most populous answers.
and @markymarkfl maybe keep the cisplatin out!!

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YAY!!!! Best news ever!

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1 reply
marienewland | @mnewland99 | Dec 30, 2024
In reply to @joiedevivre "YAY!!!! Best news ever!" + (show)
@joiedevivre

YAY!!!! Best news ever!

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Thank you!! Did you know I was told last Monday when I made appt for chemo after my CT scan that the scheduler called me back 5 mins after she made the appt and cancelled it as she said the nurse practitioner said the the chemo wasn’t working anymore based on the reading of my CT by the Hoag radiologist that I had a large metastasis in my liver!!!
I’m looking for a new oncologist based on that. My oncologist who is at UCLA never even responded to my phone calls or my chart messages.
By the way I love your posts; and you’re right a positive is a good part of it!!

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1 reply
joiedevivre | @joiedevivre | Dec 30, 2024
In reply to @mnewland99 "Thank you!! Did you know I was told last Monday when I made appt for chemo..." + (show)
@mnewland99

Thank you!! Did you know I was told last Monday when I made appt for chemo after my CT scan that the scheduler called me back 5 mins after she made the appt and cancelled it as she said the nurse practitioner said the the chemo wasn’t working anymore based on the reading of my CT by the Hoag radiologist that I had a large metastasis in my liver!!!
I’m looking for a new oncologist based on that. My oncologist who is at UCLA never even responded to my phone calls or my chart messages.
By the way I love your posts; and you’re right a positive is a good part of it!!

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We changed oncologist once. The old oncologist gave us a textbook answer via WhatsApp and I never forgave him for that. Our new oncologist is a cup-half-empty sort of person which is extremely traumatic for us (me especially) but she is very competent, she cares and she replies to my texts generally within 10 mins save for once when she was on a flight back. And, when it is important, she texts to say she will call me to chat. Every time she sees my husband, she asks about his mental well-being. Bottomline, she cares deeply about her patient (my husband) and I get some caring from her because I am my husband's caregiver. Not asking you to change oncologists but giving a yardstick to measure the performance of yours.
Again, I am so happy that it is an inflammation. I have prayed for you.

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1 reply
marienewland | @mnewland99 | Dec 30, 2024
In reply to @joiedevivre "We changed oncologist once. The old oncologist gave us a textbook answer via WhatsApp and I..." + (show)
@joiedevivre

We changed oncologist once. The old oncologist gave us a textbook answer via WhatsApp and I never forgave him for that. Our new oncologist is a cup-half-empty sort of person which is extremely traumatic for us (me especially) but she is very competent, she cares and she replies to my texts generally within 10 mins save for once when she was on a flight back. And, when it is important, she texts to say she will call me to chat. Every time she sees my husband, she asks about his mental well-being. Bottomline, she cares deeply about her patient (my husband) and I get some caring from her because I am my husband's caregiver. Not asking you to change oncologists but giving a yardstick to measure the performance of yours.
Again, I am so happy that it is an inflammation. I have prayed for you.

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I’m so glad you found an oncologist you like and that cares about your husband and you as his efficient caregiver!
Your thoughts to change oncologist is very reasonable. I did last year from Hoag based on the nurse practitioner who said I just panicking about my rising tumor marker when it took 1 month for me to figure I needed an MRI that might provide the imaging consistent with a rising tumor marker that a CT couldn’t show. After this positive results (medically) I got an endoscopy and biopsy and then changed to UCLA because it’s listed as Center of Excellence, but I’m sorry I don’t believe it is based on my experience this year. My City of Hope (not listed as Center of Excellence) radiation oncologist is excellent and referred me to a GI oncologist at City of Hope and I made an appointment today for next month to meet him. Hopefully, he’ll pass my litmus test for so someone I would like to continue care with.
Thank you @joiedevivre for your kind regards; I’ll be adding you to my rosary prayers!!

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dalegantous | @dalegantous | Dec 31, 2024
In reply to @mnewland99 "Just returned from meeting g with radiologist who did my MRIdean radiation and he thinks my..." + (show)
@mnewland99

Just returned from meeting g with radiologist who did my MRIdean radiation and he thinks my growth is just inflammation since the growth is in same segment as lesion radiated addition to fact that my marker is very low at “8” and it’s decreasing. I hope he’s right!!! Harvard educated so I do have a lot of confidence in him. Problems that led up to this: Hoag radiologists that read my CT and PET scans noted I was under chemo and radiation treatment, however they didn’t factor that “growth”COULD actually be from inflammation post radiation; this should have been mentioned ?? Of course follow up with radiation oncologist should have been mentioned. In addition, I got the idea if inflammation from radiation resolving itself within 3 weeks of last rad treatment (October 15) from AI internet search. My radiation oncologist said it can take up to 6 months; so a word of caution when doing those searches as AI posts the most populous answers.
and @markymarkfl maybe keep the cisplatin out!!

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Fantastic news!

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marienewland | @mnewland99 | Dec 31, 2024

Thank you @dalegantous!! So happy to start the new year on a positive note!
Praying the best for you in 2025!

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1 reply
gamaryanne | @gamaryanne | Dec 31, 2024
In reply to @mnewland99 "Just returned from meeting g with radiologist who did my MRIdean radiation and he thinks my..." + (show)
@mnewland99

Just returned from meeting g with radiologist who did my MRIdean radiation and he thinks my growth is just inflammation since the growth is in same segment as lesion radiated addition to fact that my marker is very low at “8” and it’s decreasing. I hope he’s right!!! Harvard educated so I do have a lot of confidence in him. Problems that led up to this: Hoag radiologists that read my CT and PET scans noted I was under chemo and radiation treatment, however they didn’t factor that “growth”COULD actually be from inflammation post radiation; this should have been mentioned ?? Of course follow up with radiation oncologist should have been mentioned. In addition, I got the idea if inflammation from radiation resolving itself within 3 weeks of last rad treatment (October 15) from AI internet search. My radiation oncologist said it can take up to 6 months; so a word of caution when doing those searches as AI posts the most populous answers.
and @markymarkfl maybe keep the cisplatin out!!

Jump to this post

Way to be your own advocate! It’s a sad state of affairs but we have to be persistent!!
So glad to hear this news. But what a stressful way to spend the holidays. Any insight into your pain?

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