Recurrence in retroperitoneal nodes, spine

[claudine]

I just hope these become available at a quicker pace than is typical for drug development

Many of us in the same boat!! FYI there's a Facebook group called KRAS mutated colorectal cancer. It's pretty new, but there are regular posts about clinical trials and other things aimed at KRAS mutated patients.

[catstaff]

I avoid Facebook but may consider it for that. But I can generally keep up with this at clinicaltrials.gov and through other sources.

KRAS mutations are extremely common, even dominant, in pancreatic ductal adenocarcinoma (by far the most common kind of pancreatic cancer) so that's driving some of the research in this area. The frequency pattern is pretty similar to what occurs in CRC (G12D, G12V most common followed by other G12 mutations, others much less common).

[Achilles Torn]

In my experience the Facebook groups focused on colon cancer trials can be very helpful. You get info on how to get into trials, individual trial experience, anecdotal accounts of success and failures etc.

I think there used to be a more vibrant community discussing trials on this board but those members have moved on or are no longer with us.

Just my 2 cents

AT

[catstaff]

Well, the pickings are mighty slim for a patient who hasn't done second-line treatment yet. We applied for such a trial, but were rejected on the grounds that his recurrence occurred too long after the end of first-line treatment. The eligibility criteria can be quite stringent. Most trials are for third-line or even later.

I have an idea of what trials I will really want him in, we'll see how that goes.

[Bianca10]

Hey everyone,

First time on this forum. It sadly my partner that is affected.
Some really interesting and inspiring stories. Seems like techniques, advances, medicines and surgeons generally tend to be more creative overseas. We’re based in the UK.
I don’t think I am able to directly message anyone so I find myself here… and not sure I’m doing this right - Achilles Torn, and anyone else with previous/current PALN, just curious to see if you’re ok/still around? How are you faring?

Achilles, I followed your case. I was encouraged that you were able to have the surgery and disappointed that it didn't work out for you. I hope you stay stable on maintenance chemo. Hubby had a G3 mtKRAS primary which was very resistant to FOLFOX, so it's unclear that maintenance chemo would help him.

Siti, I think the recurrence is sufficiently isolated, and the mets small enough, that they are planning SBRT on the two nodes as well as the spine. I'll know more when we meet with the oncologist week after next. They used EBRT on the original PALN. We'll have to see what his CEA is afterward--it is apparently an excellent marker for him. If it's low and stays low, we may be able to delay FOLFIRI.

Hey Catstaff,
You mention FolFox but not Avastin (Bevicuzimab). Some seem convinced that it works well to control lymph nodes (not much study behind that belief though) is why I ask.

In Response to Siti - I am going back on Xeloda and Bev next week. I basically been off chemo for almost a year so I guess I did get a nice break. Hope it works again !

Cheers
AT

[Achilles Torn]

I’m still here. Had some lungs Mets with the biggest removed by surgery and still on chemo. But above ground for now.

[Bianca10]

I’m still here. Had some lungs Mets with the biggest removed by surgery and still on chemo. But above ground for now.

Awesome, so glad you’re still doing alright on the whole! Glad you got surgery on the lung as well, were the smaller ones dealt with by chemo/radio?
How are you finding the maintenance/Avastin?

Sorry for all the questions!

[drmike]

I’m still here. Had some lungs Mets with the biggest removed by surgery and still on chemo. But above ground for now.

Hi Achilles Torn (and All)- I am new to this forum but have been fighting since my stage 3 sigmoid cancer diagnosis (5/13 positive local lymph nodes) in December 2021. I was grateful to make it through 6 months of chemo with an all clear from my Onc that next August. Unfortunately, my most recent CT scan showed 3 retroperitoneal nodes increased in size (confirmed cancer with PET). I will admit, I am scared to death but came across this forum and your posts...through detailing your journey ~7 years post your initial distant lymph node diagnosis, you have given me added hope that I have years (hopefully many) left to spend with my family...thank you. Once I've been on this site long enough, I look forward to posting my updates as well as embracing the support of you and all the hero's here fighting the good fight.

[Achilles Torn]

Hi Dr Mike,

From what I can tell you still have a lot of options open and a good shot at being here just as long as I have if not longer.

Hi Bianca,

The other small mets are just chilling there for now. I have had some issues keeping me off chemo for the last little while but in my experience Cap and Bev are highly tolerable in the right dose and kept me stable for years.

Cheers
AT

[Bianca10]

Hi Dr Mike,

From what I can tell you still have a lot of options open and a good shot at being here just as long as I have if not longer.

Hi Bianca,

The other small mets are just chilling there for now. I have had some issues keeping me off chemo for the last little while but in my experience Cap and Bev are highly tolerable in the right dose and kept me stable for years.

Cheers
AT

Thinking of you AT, just wondering how you’re getting on? X

[saltygirl]

I had distant retroperitoneal nodes. Had chemo, radiation and surgery. Cancer free since I completed treatment almost 3 years ago.