The Colon Club

Hey everybody,
So, despite his stage 4 status, my husband has been doing great...we met with his onc in early September and all bloodwork/numbers were so good the onc didn't think a scan was necessary.....I pushed for one (as it had been nearly 9 months) and he scheduled a CT scan. We got the results today and my man has 2 swollen lymph nodes in his abdomen....1 is "pretty big"....I'm trying not to freak, and I have searched for similar threads....just wondering if anyone has some insight....the onc wants him to come in right away (as in tomorrow)...and most likely do a pet scan....maintenance chemo is also looking like a go.... please let me know your thoughts...
Thank you all!
Jep

Sorry to read this Jep.

I would suggest getting the PET scan as directed and taking the results to a major cancer center near your home. Dana Farber (Boston), Sloan Kettering (NYC), or MD Andeson (Houston). The large centers see more and support aggressive treatment plans. Much has changed in the use of maintenance chemo / Avastin treatments in recent years. Do not be afraid of this chemo for life concept. It allows a good quality of life considering the circumstances of the disease.

Good luck in your process moving forward. Keep us posted as you learn more.
WS

Thank you Warrior Spouse . . . yes, we have been thinking about returning to MSK . . . we did an initial consult with an onc there and she told us to get back in touch if we ever hit a crossroad . . . we have an appt this afternoon with my husband's oncologist . . . he wants to do a PET scan and I believe start maintenance chemo. My husband's incision area has blistered up and popped 3 or 4 times over the past year . . . I'm wondering if maybe this could be linked to the swollen nodes? Maybe that's just wishful thinking . . . if anyone else has advice or insight PLEASE chime in.
Thanks so much!
Jep

I don't have experience with that type of incision but I have had internal stitches fester up through my incision. Thought this might help. Good luck to you, hope your appt goes good.

martd wrote:I don't have experience with that type of incision but I have had internal stitches fester up through my incision. Thought this might help. Good luck to you, hope your appt goes good.

It's interesting that you mention this . . . one of the nurse's at our surgeon's office thought there might be a stitch (she used "suture") that is causing an issue with his incision site . . . I wonder if that could be connected to the swollen nodes . . .

Hi, I’ve there and it was the worst nightmare. My fiancé had his CT scan after he completed his Folfox regimen. The Ct scan showed several prominent lymph nodes at the mesenteric. He did an PET scan and all came bame back negative. He did not eat anything sweet for almost 48 hours prior to the PET. Please see my signature.
Best of Luck,
Vana

Jep,
I am sorry to hear about this discovery. I am hoping it's not abdominal lymph nodes. However, if they are, I want to give you some info because I have experience with it.

Mine have only been detected by PET scans - never big enough by CT criteria to be seen. So, I've had PETs every 2-3 months since July of 2015. Mine are considered retroperitoneal & para-aortic, and common illiac. If you do a search - it is somewhat rare. At least rare to have these lymph nodes and not other organs involved. We have blasted mine with 30 rounds of chemo, radiation, and surgery - and they continue to persist. Next steps are to try an EGFR inhibitor chemo. I have been fortunate to keep them relatively contained - although recently a node popped up in my supraclavicular (neck) region. But considering these first showed on a scan in July of 2015 - it's not lost on me I've been relatively lucky to only have these for the past 3 years.

I would suggest taking an aggressive treatment approach and making sure your doctor is in line with that approach. Don't let any doctor tell you that this means chemo for life...it may mean chemo for now until better options come along. Let me know if you have any questions.

Best of luck,
clj12288

We opted for daily oral chemo beyond ADAPT, with mild extras to control spread and para-aortic LN before a surgery for the PALN. We also applied this oral chemo after surgery. For us, this also had the advantage of chemo much closer in to abdominal surgery, so the cancer cells just never got a break from chemo(s) exposure, unlike regular chemo-surgery sequences.

An important "extra points" question for you right now is CA199 and KRAS status. Our experience is that is possible to better target and beat conventional chemo for control and quality of life with better bloodwork and data.

Thank you clj and rp ....my husband's oncologist feels that the swollen lymph nodes might be a result of persisting issues with my husband's incision site and a fistula that we thought was totally healed (but might not be)....his onc said that we need to figure out exactly what's going on....so, he is working with our surgeon to possibly biopsy a node (or maybe do some other type of exploration)....we discussed starting chemo, but onc is uncertain about starting Avastin w/o knowing exactly what's going on....he also said he doesn't want to treat my husband with chemo if it's not necessary....all other markers have been great....so, here we are....meeting with surgeon this week and looking for answers/direction....thoughts???

One more thing...the oncologist wants to hold off on the PET scan for now, as infection/inflammation can light up....so best to wait until the surgeon checks him out (???)

Hey everyone....another update on my husband....his surgeon reviewed his last 2 CT scan and feels that the fistula is closed....surgeon and oncologist spoke and they agree that the swollen lymph node should be biopsied....I read a bit about this online....does anyone have experience with this type of biopsy? Still clinging to the possibility that the abdominal nodes are swollen for some other reason....
Thanks to all...
jep

Hi jep,
Still a possibility that the nodes are due to inflammation. But the biopsy is the only way to be 100% sure. PETs can definitely show false positives and any surgeon would be hesitant to do it shortly after surgery because of the inflammation and the healing process of the tissues. After my PET scan that showed some nodes lighting up in the abdomen, they wanted to be sure, so did a CT-guided biopsy where they essentially used an interventional radiologist to use imaging to find the proper node that had lit up. It was an outpatient procedure, there was some anesthesia involved. It was relatively painless and it was the best way to confirm what was going on and to get the right treatment plan started. Best of luck to your husband and you. The unknown can actually be worse than knowing in my experience because then you can get a plan in place.

clj:

Thank you so much for your reply. My husband's surgeon and oncologist work very closely together and they both agree that we need to biopsy. It sounds like he will have the same procedure that you had . . . it's scheduled for this Wednesday morning. I'm just hoping we get the results ASAP. Do you remember how long it took for you to get results? Hoping and praying for the best news . . . will keep you posted.
thx,
jep

clj12288 wrote:Jep,
I am sorry to hear about this discovery. I am hoping it's not abdominal lymph nodes. However, if they are, I want to give you some info because I have experience with it.

Mine have only been detected by PET scans - never big enough by CT criteria to be seen. So, I've had PETs every 2-3 months since July of 2015. Mine are considered retroperitoneal & para-aortic, and common illiac. If you do a search - it is somewhat rare. At least rare to have these lymph nodes and not other organs involved. We have blasted mine with 30 rounds of chemo, radiation, and surgery - and they continue to persist. Next steps are to try an EGFR inhibitor chemo. I have been fortunate to keep them relatively contained - although recently a node popped up in my supraclavicular (neck) region. But considering these first showed on a scan in July of 2015 - it's not lost on me I've been relatively lucky to only have these for the past 3 years.

I would suggest taking an aggressive treatment approach and making sure your doctor is in line with that approach. Don't let any doctor tell you that this means chemo for life...it may mean chemo for now until better options come along. Let me know if you have any questions.

Best of luck,
clj12288

Hello CLJ,

We share some commonalities. I am one of the weird LN met people. Mine started in retroperitoneal area, spread to thoracic and then up to my left supraclavicular node. Thought it was interesting that it went to the left and not the right in the neck.
Not similar in that chemo didn’t help me and my spread was very rapid. Thankfully immunotherapy is working really well for me now.
Sure hope that between surgeries and treatment you can diminish or keep your disease contained.

Beth

Hi JEP,

I'm responding to this post instead of today's post.

I don't know a lot, but it seems a lot of people on this board survive on maintenance chemo if surgery is not an option.

You said, "one of them is pretty big." Did they ever give the size of it? If you see my signature line, you'll see why I'm curious.

Thanks so much.

Kelley