Update: some good, some bad news

[flyboy22]

It's been awhile since I've posted. Normally I just read how everyone is doing. But it's time for an update.

I got transferred back to Houston from Paris for work. So my wife finished up 8th round of FOLFIRI Dec. 7, 2016, and had a final Avastin infusion on Dec. 19 before we actually left Paris.

We thanked our nurses and our Onc for all they did, but it was time to go home.

After spending Christmas in Germany, we arrived in Houston just before Dec. 31.

I previously made three different onc appointments to get various opinions etc.

We brought all our scans and reports, plus specimens from our time in France.

Good news: We got into MD Anderson and have a great doctor: Dr. Vilar Sanchez.

Not so good news: after each initial visit with each onc, they all said prognosis was 2 yrs, maybe 3, but could be 18 months. But it appeared based on Nov. 2016 PET scans that FOLFIRI was working, so recommendation was to go forward and do 4 more rounds and then see where we're at.

Only MD Anderson onc entertained possibility of surgery to retroperitoneal lymph nodes, though it was a small chance.

MD Anderson decided also to do a baseline CT Scan with contrast before we restart treatment.

Bad news: The scan found numerous, mostly sub-centimeter mets throughout both lungs. They didn't count because there were too many; some were at 1 x 1 cm mark.

Also, some growth in the lymph nodes in iliac region, others are stable but not shrinking.

The radiologist also went back to the Nov. 2016 PET scan and noticed that the Paris docs missed the lung mets, as they were present in Nov PET scan, though small and easy to miss. Based on measurements between Jan. and Nov scans, allowing for some technical differences, Lung Mets grew despite treatment.

Nothing in liver yet, though they noted tiny right hepatic hypodensity that is too small to characterize that can be followed.

So FOLFIRI is no longer working and surgery no longer an option at all (absent a miracle). And now we have 6-9 months if we stopped treatment all together and 12-15, maybe 18 if we restart treatment. Within a week our prognosis time frame was cut in half. That was rough.

Onc wants to finish 4 rounds with FOLFOX again and see if that helps, though it sounds he's a bit skeptical it will since we did FOLFOX first and had recurrence about at the 1 year mark post chemo.

Still, it doesn't hurt to try. So we begin FOLFOX tomorrow and get to experience treatments here in the US.

Otherwise we're looking at Lonsurf and/or Stivarga since EGFR targeted therapies are not an option.

Basically we've gone through two lines of treatment with few options left.

Physically, my wife still feels fine. But we know that won't last forever most likely.

Any one have any suggestions or been through this or similar?

What can you tell me about longsurf and stivarga side effects?

Thanks for help.

[jhocno197]

Stivarga was easier on my husband than either FOLFOX or FOLFIRI, as long as he stayed on less than manufacturer's recommended dose. He was ok at 3 pills a day, without the scary side effects you hear about with Stivarga. 4 pills a day was bad. I KNOW Stivarga extended his life. He was on it for 8 months. He did develop blisters on his fingers the last couple of months, but they were annoying, not painful.

He just started his third cycle of Lonsurf last Monday. His side effects with it have been abdominal pain, low hgb counts requiring a blood transfusion on day 15 of each cycle so far, and fatigue. He had an emergency CT on 12/25, and another emergency CT yesterday, and it looks like the Lonsurf is keeping the inside tumor stable for now as there was no change in that month. (He had the CTs due to pulmonary embolism.)

[Maia]

Immunotherapy trial, at MD Anderson or other places in Texas? (you can try the clinical trial finder link in my signature).

Just examples: https://clinicaltrials.gov/ct2/show/NCT02600949
https://clinicaltrials.gov/ct2/show/NCT02668770

Also, since it looks you can travel, read viewtopic.php?f=1&t=49736

and later... viewtopic.php?f=1&t=49736&start=390#p447707

There is hope.

[rp1954]

We got a retroperitoneal lymph node cluster surgically removed over 5 years ago, after demonstrating control of dissemination and retarded progression, for a stage 4b/mCRC, albeit earlier in the sequences of dissemination, met growth and progression. The initial state at discovery included peritoneal spread and the retroperitoneal (para aortic) lymph node cluster, with unbiopsied "thangs" in the lungs and liver that eventually responded to chemo and expanded chemistry.

To us, the only way to realistically achieve this has been through continuous, daily chemo with extra off label inhibitors, guided mostly by more thorough bloodwork, and some tissue tests. A lot of the extra inhibitors also improve quality of life by reducing chemo side effects. Treatment reductions and cycling, in part or whole, leads us to regrets and remedial actions. Medical support becomes a cooperative quiltwork, nonstandard with doctors task based and consulting, rather than controlling. We've treated insurance as an irregular, partial source of payment with very little say in our decisions.

[DarknessEmbraced]

I hope that your wife's chemo goes well and shrinks her tumors!*hugs*

[ebv60]

As you can see by my wife signature she been through most all the "standard" chemo treatments and had no shrink of the tumors she was on stivarga for about 6 months ,started with 4 pills but that cause high liver count at about 6 weeks in ...had a month off meds then 3pills till the end of year ..CT scan in late Dec. tumors growing ..stated Lonsurf first of the year ...on one cycle so far ..no bad side effect ?? I not holding out much hope of it working (lonsurf) DR. looking into maybe trials for her ????
Wish the best for you

[gtgirlee]

Wow, sounds familiar.

My husband was diagnosed 07/2015, had surgery to remove a 15cm tumor that had fully invaded his bladder and had an illeal conduit built from intestine and a permanent urostomy.

Following this he completed 6 months adjuvant folfox. In the last couple weeks is when the first lung nodule appeared but my husband had (at the time undiagnosed) breathing issues and he has frequent UTIs while on chemo so they thought perhaps it was an incidental nodule. 6 weeks later after a SBO surgery, there were 6 more nodules. Again they thought infection or something. Fast forward to 6 months later-- all nodules had doubled or more in diameter and had several new nodules and our world came crashing down-- again.

Nodules in all lobes, both lungs. A lung biopsy completed 12/09/16 confirmed both the cancer and that he has constrictive bronchiolitis (likely due to many deployment exposures)

Started Folfiri in January adding Avastin at the beginning of February and a chest Xray when he was in the hospital last week for infection showed more nodules and larger nodules-- ones not previously on CT in January or Xray in December. He has another scan today.

If these have continued to grow our oncologist is recommending Lonsurf.

My husband is also KRAS G12V MSS, he also has significant signet ring cell presence.

[TXLiz]

So sorry to see this.

I am not one of the smart people here who know so very much. Less than a year from my diagnosis...

But is immunotherapy not a choice for your wife? Saw my onc yesterday, he said immunotherapy is what they go to now after chemo and conventional therapy fails.

My best wishes to you and your wife and family.