Chemo fail?

[Monimom]

Good morning to all, I have a question regarding chemo and treatment, my DH had a CEA level increase back in June, his Dr ordered a PET scan but the scan didn't reveal anything suspect, she then decided to hold off on doing CEA tests for a bit as they can cause unnecessary anxiety, at his last treatment at the end of sept. she wanted to schedule a CT scan, he requested to wait until Oct. as he just began a new job and is trying to keep his time off low. she replied to his request with, "it's your life'
She apparently decided to do a CEA at that appt. (Sept 25), Today his level was uploaded in his chart online, it went from 582 (June 15) to 1474 (Sept 25 ), I am shaking as I type this, he doesn't know he's at work, his Dr. hasn't called, but I see she notated this in his chart :

He does not want to get a repeat CAT scan until end of October at least then later in the chart she has THIS !!!!

Patient has been refusing a restaging CAT scan does not want to do it even for the next cycle wants to wait 26 weeks more. (this is UNTRUE)

I am currently at complete odds with all of this, I know what we need to do, I am just freaking out, this is all too much to bear right now, we havn't sought out any other Dr at this point as we're trying to keep insurance, we had to strat paying COBRA, until his insurance kicks in, I feel like im drowning, if anyone feels they can spare a ray of sunshine I am more than happy to receive.
Thank you
Moni : |

[claudine]

Also dealing with "I know something he doesn't know" regarding my husband's CEA levels, I totally empathize with you! And I'm so sorry about the mix up, obviously there's a misunderstanding between what your husband asked (postponing scan by a month) and what his onc thinks (26 weeks!). I wouldn't hesitate and call her to discuss this with her directly. Explain that your husband doesn't want such a long delay, just a few weeks, and have her schedule the scan.

[boxhill]

I just want to point out that unless you were actually at the appointments, you can't be sure what he actually said--or what she actually asked. It does sound like she was frustrated by his desire to postpone a scan.

In any case, I understand your anxiety and agree that waiting too long for a CT scan seems unwise given his CEA trend and his original staging. My H and I have both had cancer, and neither one of us would call the other's doctor. I'd discuss it with him first, personally

[Monimom]

Boxhill,
I agree totally, I did discuss this with my DH, he said he told her he'd like to wait until Oct , but this was before we knew about his CEA rising, she has not contacted him regarding it,because as you said she is likely put off by his request to wait, we received the notification of his test result via mychart online,she never mentioned to him at his appt. that she was doing the test, and obviously this rise changes his feelings about waiting, so we will be trying to get an appt this week. I have in the past called his Dr. on his behalf when needed either because he's not been able to to call or because he's requested me to. I would never do it without his knowledge.

Thank you for your replies

[claudine]

Glad to hear that the confusion over the appointment is getting resolved. When we first learned about DH's diagnosis, a friend told us: with cancer, you'll need two things: a good oncologist; and, an advocate. We decided early on that I'd be that person - the one who reads reports, does the research, etc. DH goes by what the onc says, and that's it; and even though I do trust his onc, I'm the one pushing (for more tests, etc) , if needs be...
I hope the scan brings answers to the rising CEA levels, and a good plan to tackle whatever is going on XXXXX

[Monimom]

Claudine,
Thank you so much for your reply, you have described our relationship, I have always been the "go to" for this, I have been with my husband since I was 17, we've raised our family and this was going to be "our " turn to be a "couple" again.. then this dx happened...

I did get a scan scheduled for him this coming Monday, and have been praying about this alot. My husband said if he finds out the cancer has spread after all this chemo, he's done. He is suffering from painful feet from neuropathy from 10 cycles of Oxaliplatin, and lately hes become increasingly tired, we've been truly blessed how well he has handled everything thus far, so i'm not complaining.

I am hoping that God provides us with a clear path with little confusion.

Thank you so much again
Moni : )

[claudine]

Ha, in the same boat regarding grown children, we were looking forward to a lot of traveling, but life decided otherwise... And my husband also suffers from permanent neuropathy in his feet, small gift from Oxaliplatin (which also did not work for him).

While I was waiting in the car and he was meeting with his onc about his latest scan, I would visualize the onc giving him good news... That's my way of praying, I guess. It worked this time (not always the case!).

Wishing you both much strength for the days ahead, keep us posted on the results of the scan XXXXX

[Witherap]

Looks like your husband is mss but do you know if he is high/moderate Vs low from tumor mutational load perspective?

[Monimom]

Witherap ,

I apologize, but I dont know what that means , would that info be found in his biopsy report??

[claudine]

No, unless it was tested specifically (requested); MSS folks (like both our husbands) typically do not respond to immunotherapy, but if they have high mutation burden, it sometimes works, giving another treatment option. Foundation One typically does this type of testing; we haven't had it done yet, but it's on my list of things to ask the onc if the next scan doesn't look good!

[claudine]

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