Flying Blind

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boxhill
Posts: 90
Joined: Fri Apr 06, 2018 11:40 am

Flying Blind

Postby boxhill » Mon May 28, 2018 3:15 pm

Let me preface this by saying that I know uncertainty is the name of the game when dealing with CRC, but I have a second appt with my onc on Wednesday before Cycle 3 infusion and I'm looking for input as to what, if anything, I can ask him that would clarify matters a bit.

Here's my situation:

Firstly, I presented at the ER with severe abdominal pain, and so the only scan I had before surgery was a CAT scan with contrast of the abdomen, which only included the "bases" of my lungs. That scan revealed that I had a blockage which was putting me in danger of perforation, so we went ahead with surgery right away. The scan showed my liver and lungs as clear, but luckily my surgery was open, and my surgeon was able to find and remove a tiny subcapsular liver node (0.5 cm). Lymph nodes removed as indicated in my sig. I gather the mesentery clump was indicated by stranding on the scan. So I am left wondering whether there were other liver or lung mets that were undetected.

Secondly, my tumor didn't express CEA, so that is useless as an indication of what is or is not going on.

Thirdly, a PET scan after surgery was deemed useless because of all the surgery-related activity that would light up.

Fourthly, I am STILL waiting to get the results of the genetic testing that will, I hope clear up the Lynch question. It's been a little over 6 weeks. Meanwhile, D-F put up a detailed genetic report on the tumor a week ago on the Patient Gateway, and they had 2 weeks less to work on it. But I need the blood results to tell if it the mutations are germline or not. GRRR!! Okay, maybe he is going to tell me on Wednesday. I hope. I guess I am mostly venting on this one, and of course it is mostly about the outside lab. :)

The consultant at D-F indicated that pretty much all I can do is go through the 12 cycles of FOLFOX and then have thoracic and abdominal CAT scans when its all done to see if there is anything there. Sure, I *could* have a scan somewhere in between.

I maintain a positive outlook and all that, and I have been extremely lucky so far with fairly minor side effects of FOLFOX compared to a lot of people. I try not to borrow trouble, and not get worked up about issues before I know I need to. But that is at odds with my need to research my condition on the internet and obsessively read other people's stories.

Maybe I need to turn off the computer and go outside and weed. :)
F, 64 at DX CRC Stage IV (or "3 1/2" per Dana Farber consult, LOL)
3/17/18 blockage, emergency surgery, r hemicolectomy
11 of 25 nodes
5 of 5 mesentery nodes, matted
0.5 cm sub-capsular liver met removed
pT3 pN2b pM1
Neg CEA, neg BRAF, mut KRAS, germline mut ATM
dMMR, MSI-H, Neg for Lynch
5/4/18 FOLFOX started
Added Neulasta 6/28/18
7/9/18 CT scans show no masses or enlarged nodes, 2mm indeterminate lung nodule

rp1954
Posts: 1343
Joined: Mon Jun 13, 2011 1:13 am

Re: Flying Blind

Postby rp1954 » Mon May 28, 2018 4:28 pm

We also track CA199, AFP and LDH when CEA is not performing, with ESR and hsCRP for background inflammation that can affect these markers.
watchful, active caregiver for stage IVb CC since early 2010. immuno"Chemo forever," for mCRC

boxhill
Posts: 90
Joined: Fri Apr 06, 2018 11:40 am

Re: Flying Blind

Postby boxhill » Mon May 28, 2018 5:00 pm

Thank you! I will ask about those.

BTW, I don't want to seem ungrateful that I have no known masses right now. Believe me, I have read enough here to make it clear to me how very lucky I am.
F, 64 at DX CRC Stage IV (or "3 1/2" per Dana Farber consult, LOL)
3/17/18 blockage, emergency surgery, r hemicolectomy
11 of 25 nodes
5 of 5 mesentery nodes, matted
0.5 cm sub-capsular liver met removed
pT3 pN2b pM1
Neg CEA, neg BRAF, mut KRAS, germline mut ATM
dMMR, MSI-H, Neg for Lynch
5/4/18 FOLFOX started
Added Neulasta 6/28/18
7/9/18 CT scans show no masses or enlarged nodes, 2mm indeterminate lung nodule

User avatar
O Stoma Mia
Posts: 1363
Joined: Sat Jun 22, 2013 6:29 am
Location: Traveling abroad

Re: Flying Blind

Postby O Stoma Mia » Mon May 28, 2018 5:21 pm

Have you made use of the PREMM on-line tool?

http://premm.dfci.harvard.edu

boxhill
Posts: 90
Joined: Fri Apr 06, 2018 11:40 am

Re: Flying Blind

Postby boxhill » Mon May 28, 2018 7:59 pm

Interesting. PREMM says my chances of having a germline mutation are 1.6%.

Of course, as my genetic counselor pointed out, my family is tiny--7, counting all four GPs, parents, one uncle, and one sibling--so there aren't many individuals to go by. The only other relevant cancer is my sister, and her tumor (at age 65) was left side, which is less likely to be Lynch. It was confined to the colon, and she never saw an oncologist and knows nothing about the pathology.

The D-F report said there were no signs of methylation of the gene that is not expressing its protein--MLH1--which is according to my understanding not a good sign. I've been trying not to brood about that for the last week.
F, 64 at DX CRC Stage IV (or "3 1/2" per Dana Farber consult, LOL)
3/17/18 blockage, emergency surgery, r hemicolectomy
11 of 25 nodes
5 of 5 mesentery nodes, matted
0.5 cm sub-capsular liver met removed
pT3 pN2b pM1
Neg CEA, neg BRAF, mut KRAS, germline mut ATM
dMMR, MSI-H, Neg for Lynch
5/4/18 FOLFOX started
Added Neulasta 6/28/18
7/9/18 CT scans show no masses or enlarged nodes, 2mm indeterminate lung nodule

boxhill
Posts: 90
Joined: Fri Apr 06, 2018 11:40 am

Re: Flying Blind

Postby boxhill » Thu May 31, 2018 7:08 pm

Well, I had an appointment with the onc yesterday before my Cycle 3 infusion. I ran though a list of questions I had amassed, and got good information. He had at one point mentioned possibly using Avastin later, but this time he clarified that he felt there was no point in doing so because I had no known masses. That's good. The other good thing is that he said he usually orders scans after Cycle 6, but in my case he thought we could move it up several weeks to the end of June/beginning of July, which would be great.

He pointed out that they didn't see anything when I had a chest x-ray during port placement. I didn't think realize that they were looking at anything other than the port placement, but he said they would have mentioned any oddities. That's a bit of a relief, but I look forward to getting an actual thoracic scan.

I brought up the fact that my liver met didn't show up on the original scan, and that I had heard that there was a better scan for the liver. He said that the MRI of the liver would be the thing, but that he was concerned about getting it approved by insurance in the absence of any other signs of abnormality in the liver. Apparently insurance companies are increasing reluctant to pay for such things. He mulled it over, and decided that we should go ahead with the regular scans, and he would work on figuring out a way to get it approved.
F, 64 at DX CRC Stage IV (or "3 1/2" per Dana Farber consult, LOL)
3/17/18 blockage, emergency surgery, r hemicolectomy
11 of 25 nodes
5 of 5 mesentery nodes, matted
0.5 cm sub-capsular liver met removed
pT3 pN2b pM1
Neg CEA, neg BRAF, mut KRAS, germline mut ATM
dMMR, MSI-H, Neg for Lynch
5/4/18 FOLFOX started
Added Neulasta 6/28/18
7/9/18 CT scans show no masses or enlarged nodes, 2mm indeterminate lung nodule

boxhill
Posts: 90
Joined: Fri Apr 06, 2018 11:40 am

Re: Flying Blind

Postby boxhill » Wed Jun 13, 2018 11:06 am

Finally, the Lynch results came in: negative! That's a big relief.

On the other hand, I do have germline ATM mutation, which puts me at higher risk for various cancers, including breast and pancreas. If he has it--50% chance--it also puts my son at higher risk for prostate cancer, and he already has a GF on my side with the disease, and his father and an uncle on the other side.

Scans scheduled for July 10th.

And, frustratingly, my infusion yesterday had to be delayed for a week due to low platelets.
F, 64 at DX CRC Stage IV (or "3 1/2" per Dana Farber consult, LOL)
3/17/18 blockage, emergency surgery, r hemicolectomy
11 of 25 nodes
5 of 5 mesentery nodes, matted
0.5 cm sub-capsular liver met removed
pT3 pN2b pM1
Neg CEA, neg BRAF, mut KRAS, germline mut ATM
dMMR, MSI-H, Neg for Lynch
5/4/18 FOLFOX started
Added Neulasta 6/28/18
7/9/18 CT scans show no masses or enlarged nodes, 2mm indeterminate lung nodule


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