The Colon Club

So sorry, Paige,

At least you are on the mend now. Admire your strength, as always.

I really feel for you! That is a traumatic dx.
It is a good thing the doc's thought to do an MRI, catch it while treatable.
It is good to know you are in recovery and having intensive therapy to regain strength and mobility. You can do this, I know it.

roadrunner, IDF108 and beachsunrise,

Thank you all for the kind words. I really appreciate the encouragement!

Paige

Thought I’d add this: I assume your team is considering a multi-modal approach— surgery (completed), radiation, and chemo? Significantly improved results have been achieved with this approach in recent years. (Your case appears somewhat unique in that you do not appear to have other detectable disease, so theoretically the chemo may be less important). Just a thought, of course. This frontier has moved in recent years, so I think it’s important to be aware of that, in case your doctors are not focused on the vanguard of care in this type of situation.

roadrunner,

My neurosurgeon mentioned that I would need radiation after surgery but didn't mention chemo then. I am open to do more chemo. FOLFIRI was really harsh on me, though. Before all of this happened, I was told the 3rd line chemo treatment (if needed) would be Lonsurf/Avastin combo.

Paige

This is NOT super well-informed, just a guess on my part, but I think the chemo piece was added (in the studies I read) because many people with brain involvement have diffuse disease, which is often the most problematic thing. More recent treatments and approaches to Stage IV colorectal cancer appear to have extended survivals to the point that this situation (brain involvement without other detectable disease) may be becoming more common, so some cases now may not involve chemo, even where treated aggressively. If I recall right, standard chemo isn’t very effective in treating brain metastases, but may be included, as it often is with Stage IV folks generally, to eliminate or control cancer at other sites.

When you feel well enough, it may be good to get a detailed strategy from your doctors. My impression is that your situation is at least relatively uncommon, so strategies may vary in material ways. Similarly, I wouldn’t assume that the FOLFIRI failed because of the brain met. I don’t think it has much effect there. But again, that’s just a guess, a question perhaps.

roadrunner,

Thank you for the advice. From my limited research, I have learned that liposomal irinotecan which was part of my chemo regimen can penetrate the blood brain barrier (BBB). It will be challenging to find a medication that can penetrate into the brain. Liposomal medications with a low molecular weight have been partially successful.

As a side note, if one were to rely on Stephen Paget's seed and soil cancer hypothesis from the late 1880s, you could possibly think that blood circulation solely is responsible for brain metastasis in rectal cancer patients. However, we both know that must be false. Not every rectal cancer patient with lung mets gets a brain met. Other factors must be involved. I believe it comes down to bad genes and/or bad luck. I think it's a bit of both.

Take care and enjoy the holiday!

Paige

Hi,

Just wanted to give an update. I finished rehab earlier this summer. Luckily, I regained mobility fairly quickly. It was a somewhat smooth transition from wheelchair to walker to walking independently. Completed 3 Gamma-Knife treatments to the brain in June. I met with my oncologist mid-July and he doesn't want to restart chemotherapy until scans show progression. He said possible options would be to restart FOLFIRI or opt for XELODA/Avastin combo. CT of chest/abdomen were clear at the end of May and brain MRI in June showed no progression. I will have new scans at the end of September along with a MRI of my brain in October.

It has been a difficult summer. With the passing of Rob(RockRobster), Sara(skimom), and Chris(prayingforccr) all this summer, it hasn't been easy to come to this forum. I would like to think that Rob, Sara, and Chris' spirits are with all of us and they are cheering us on for CRC victories big or small.

Hope everyone was able to spend cherished time with family and friends this summer.

Take care everyone,

Paige

Thank you for giving us some news, Utahgal. It sounds like treatment was a success, congratulations on making it through rehab!
I agree about the difficult summer. For me it started a while back when Rikimaroo left us. We're 6+ years into this fight and sometimes it's better for my mental health not to visit the forum...
Hubby is doing ok overall, last scan (late June) showed stability, and his CEA has remained constant for several months, hovering around 8. I grieve the active life we used to share, he's quite handicapped now, but not paralyzed, which is good.
Life goes on

Claudine,

I am really glad to hear that your husband's disease is stable. I am sorry to hear about his mobility limitations. That's tough! Yes, life really does move on whether we are ready for it or not. As a group, I guess all of us need to embrace the things we can do today and learn to let go of the things we can no longer do. Easier said than done right ??!!

Take care and keep in touch,

Paige

Hi Everyone ,

Claudine , good to see you here and your husband still pressing on .
Utahgal7 you have had a tough time and hope this next few months are easier for you .

My mum died over the summer at the grand age of 82 having being diagnosed at 67 with stage 4 disease . The first few years were the hardest but right through her 70s she only had one operation , lung resection .
She was not on any treatment . The disease returned to her lungs two years ago and she had treatment with a biological
agent and in true mum style responding really well . This is the part I wish to highlight for encouragement . She did die with a lot of lung mets but for over 15 years must have found a way to keep them at bay .

How she did that for so long with no treatment is beyond my understanding but I think it gives some hope that sometimes big stretches without intervention can open up and make it all more doable for some people .

That is the hope .

Wishing you all every success with your treatments ,
Stu

stu wrote:Hi Everyone ,

Claudine , good to see you here and your husband still pressing on .
Utahgal7 you have had a tough time and hope this next few months are easier for you .

My mum died over the summer at the grand age of 82 having being diagnosed at 67 with stage 4 disease . The first few years were the hardest but right through her 70s she only had one operation , lung resection .
She was not on any treatment . The disease returned to her lungs two years ago and she had treatment with a biological
agent and in true mum style responding really well . This is the part I wish to highlight for encouragement . She did die with a lot of lung mets but for over 15 years must have found a way to keep them at bay .

How she did that for so long with no treatment is beyond my understanding but I think it gives some hope that sometimes big stretches without intervention can open up and make it all more doable for some people .

That is the hope .

Wishing you all every success with your treatments ,
Stu

Thanks stu, loved your post. Sorry to hear about your mother passing, but it is good she lived a great life for so long,

Did your mum do anything specifically that you feel might have helped the mets at bay for so many years?

Thank you!

Javi

Stu,

I am so sorry to hear about the passing of your mother. That is very sad. I am sure that you have many wonderful memories of her.

Like Javi, I, too, am curious how your mother was able to keep her lung mets stable for so many years. Any information that you feel comfortable sharing would be really appreciated. Thank you in advance.

Take care,

Paige

Stu: I’m very sorry to hear that your mum passed, but wow!—what a great story and example she lived! She appears to have defied all expectations all along the way and—in the end—lived a long, full life unbowed and unvanquished by cancer (we all go at some point, and the 80s are generally viewed as the optimal time to do so). I suspect she had an extremely powerful immune system, low stress, and an optimistic, peaceful outlook (always sounded like it from your posts, anyway). But her magic was likely a combo of the fact that she mainly faced pulmonary metastases, which can be quite indolent, at least in the absence of other disease, and something else— something that we may understand someday, but can just stand in awe of today.

The recent activity on this thread has inspired me to update my own situation, mostly in support of, and solidarity with, Paige (for starting this thread) and the others posting here.

So to keep it as short as possible, after my LUL lobectomy in July of ‘23, I worked back up to running 2-3 miles 4-5 times a week, with life otherwise normal. I knew, however, that I had a small tumor in my rectum, likely a lymph node that had somehow survived the original CRT. So I started FOLFOX again in February of this year, and did 5 more cycles of chemo, for 13 FOLFOX total (though some minor Oxi reductions meant I didn’t have 13 Oxi cycles—I do have some minor numbness in my feet these days). The tumor responded, CEA back to normal and stable to slight reduction in size. I had a choice of TME or APR, but my surgeon and I both heavily favored APR, so there wasn’t much debate. There was just too much accumulated damage to my rectum (which I really shouldn’t have had anymore, anyhow), so incontinence would have been likely. I’ll admit I was pretty freaked out about the surgery.

Did the APR in late June. So here’s the thing: it was a reasonably tough surgery, and I even had to go back in the hospital briefly for an infection (likely viral), but overall it was smooth sailing and no biggie. Ok, now get ready for it—I would say the resulting stoma/ostomy is . . . no big deal. Just takes a little getting used to, but overall I’m loving life again and doing wonderfully with it. Just about to start real running again, though I’m already walking vigorously for long distances every day. Sitting (look up “Ken butt”/“Barbie butt” for those of the female persuasion) was fine after a month. The ostomy itself is kinda fun (I’ll admit I’m a different sort of guy, could care less about touching poo (which happens from time to time), and like technical challenges). Still figuring out optimal clothes and even some “appliance” optimization, but no real troubles. Feel 100%, at least, as usual, until my next scan! Have clambered back to NED for the moment.

So that’s the current update. Will answer any questions anybody may have about the ostomy side of things (there’s certainly much more to tell!), and feel free to PM me if you’d like. I may post this tale of woe ; ) in a separate thread as well, in case anyone out there is considering this surgery. It seems very sad to me now that people get all freaked out by this. It is really nothing in the big scheme of things, or at least it’s been that way for me so far.

To close with a couple of anecdotes: Telling my 20-yr.-old son about the upcoming ostomy surgery while driving to his summer job in Maine back in June, and as it sinks in he turns to me with a mischevious grin and says: “You’ll have a last poo!” Never one to be upstaged, my riposte was “As will you, my friend. As will we all.” But seriously, my “last poo” was not memorable. Surgical prep. Would’ve liked to go out with something more impressive ; )

My 18-yr.-old is more of a tough guy, so I worked it into my dad duties, threatening to chase him around and rub the bag on him if he doesn’t clean up his messes. (It’s pretty much hermetically sealed, so not a real scary threat, but weird nonetheless ; ). But he didn’t really grasp the nature of the anatomical changes, as I discovered yesterday while watching football with him. We were chatting about it, and I said: “I can actually show you my intestine, if you’d like.” He demurred, fortunately, but suddenly got really confused. I explained how the stoma was created by pulling the descending colon through the abdominal wall. His eyes went wide and he said: “Wow! Crazy!” Then we went back to the game. I dunno, maybe it’s good to have boys!

Anyway, all good for now. Sorry for the long post, and, of course, YMMV. I wish everyone the best on these insane journeys.