PET/CT tomorrow

[roadrunner]

Beach: A lot of these answers depend on the nature, size, and location of the target you’re trying to treat, and the dose and skill of the rad onc. In my case the treatment itself was a non-event (other than holding my breath for a bit during the treatments). No noticeable side effects. And while you’re correct that pulmonary SBRT initially lowers WBCs (because many pass through the beams, and it takes about 2 Gy to destroy them), it tends to increase levels for six months or so afterward, which was a nice surprise.

One question I have about your case is the following: It’s a little hard for me to tell from the posts if there is a reasonable certainty that the target nodule is in fact a met. If I recall right uptake was on the line, not definitive. I believe I saw also that it’s very small (5mm?). Has your team measured growth rate? Are there other diagnostic factors? The reason I ask is that you won’t be getting material to test, which may be a consideration, both on that basic question and the genetic/treatment front.

[beach sunrise]

It is reassuring that WBCs could increase later.
Nodes re indeterminate but suspect at this time. Right middle nodule 5mm lit up with SUV 1.3. It has been there a while with no change in size. Not sure how long but around 2 years.
Lower right node stated out 4mm. then 6x4mm and now meaures 5mm.
It was also noted the Right upper lung node that has been sitting there since dx at 5mm is still 5 mm but they suspect it also now.
So, no definite determination of mets but sure looks like it.
CEA is a good marker for me. It rose to 26.x and now 15.9.

[roadrunner]

Wow, that’s a confusing picture. I understand your frustration.

Sorry if you clarified this before, but they can’t wedge one (perhaps the growing nodule (if it is indeed that, as even the change there appears to be within normal variance))? Or even segmentectomy? Or perhaps a biopsy? (I understand those are challenging in the lungs, especially at those sizes.) I’d be interested in the reason for their reluctance to do a surgical approach, at least in part. I could think of several, e.g., don’t meet growth requirements over time or radiological diagnostic criteria, too small/hard to find, central/difficult location, etc. But you’re saying they suspect they are metastases, and the CEA number is strongly suggestive of disease somewhere. So I’d wonder what the surgeon, in particular, is recommending, and why. Did you get 2/3 opinions there? SBRT/ablation can be very effective, but there is real potential value in knowing what you’re dealing with, if possible.

[beach sunrise]

RML nodule is to deep and very close to a bronchial tube. So its difficult. Could take right middle lobe but suggestion is not to, just go for SBRT for now.
RLL nodule is in a valley. So its difficult too.
I had two more consults. Both suggested heavy chemo and see what happens. One of them did say SBRT is an option but still heavy chemo should be used.
I will get PET/CT scan in the mail to Germany tomorrow and await their opinion before I decide anything.
What a mess!!!!

[roadrunner]

This really is a tough call/“unusual”! If you don’t mind, one more clarification: Are your suspected mets (3 potentially, it seems, all roughly the same size and not growing (or growing very little) over very long periods—top end for CRC Mets is 2x/120 days, though obviously YMMV, and they suspect these, so . . .) confirmed to be lymph nodes? (That’s what it sounds like.) If so, isn’t that also unusual? From what I’ve seen, pulmonary lymphatic involvement does occur in some people, but all the cases I’ve seen have metastases that aren’t lymph nodes as well. If it’s nodes (and just nodes), what does that mean for prognosis? Is that why they’re recommending FOLFIRI (I suppose that’s what you mean by “heavy chemo”)? I understand also that you have been treating it (if I’ve read right, among other things with high(er) dose 5-FU (Xeloda))? While I don’t recall having seen anything in the literature confirming that Xeloda can control pulmonary metastases, FOLFIRI does improve PFS in that context (and occasionally even produces full remission), so the Xeloda certainly could be part of the explanation as well.

Sorry if I’m just late to the party on this. Yours just looks like a fairly unique situation, so I was trying to understand better. It seems like your team is going for a “whack-a-mole” approach due to the CEA, indeterminate radiological findings, and surgical contraindications. That may indeed be optimal under the apparently unusual circumstances presented. You def seem to be on top of it, but fwiw it seems like a situation where it’d be best to make sure all of the “unusual” angles are fully considered.

(I know that’s probably nothing new, and you’ve consulted many different physicians and are sophisticated yourself, so please just see it as me trying to help if this is all redundant. At least I contributed on the “SBRT boosts immune function” point, right? : ) As always, Good Luck!)

[beach sunrise]

They are reported as nodules. So, now I am confused if it means lymphnodes or something different?
You are giving me super great information to digest and have better discussions with consults. Thank you!!!
one of the nodules, 5mm, is not growing but lit up on PET/CT. Second nodule went from 5 mm to 6.6 since Sept I found out today. The third nodule went from 5 mm to 6mmx4mm then back down to 5mm over a 3 month period.
Yes, MSK offered folfiri as first thing and see what happens, Dr. Boyd also said chemo would be best starting out.
These nodules are in such hard places for SOC.
Got the most important scan today (Dec scan) and will send it off to Germany today.
I am going to reachout to Dr. Molena (I think I spelled it right) at MSK also for an opinion.
There is also a Cancer Treatment Center of America someone suggested to me. Never considered them but why not!?!

[Claudine]

Looks like you’re always on top of things beach sunrise! I just wanted to add that my husband did Folfiri/Avastin for his many small lung nodules (I think the largest one was 5mm), he finished systemic chemo over 3 years ago and his lungs have been clear since, no recurrence there, so there’s something to be said for heavy chemo sometimes

[roadrunner]

Happy to be of assistance! Here are a few more general observations based on your last post. Going mostly from memory (I’ll go confirm later and amend if necessary). Pulmonary nodules *can* be lymph nodes, but they can be many other things also. Size, growth rate (usually expressed as “doubling time”), radiological appearance, and clinical context (e.g., primary somewhere else, CEA) are all relevant to diagnostic evaluation. PET uptake is, as you know, another factor. Most generally (there are loads of distinctions “under” this), most *nodes* are “solid.” Many primary lung malignancies are classed as “subsolid,” at least in some respect. CRC mets are usually solid. Another complication in your case is the small size of your nodules: these are just barely beyond being “micronodules” (<3mm). That makes them harder to characterize and very hard to find. It’s a positive factor diagnostically, however. Also, if I recall right, your PET uptake was on the line.

They’ve called these “indeterminate,” which seems to make sense (tiny, stable or slow growing (but with a background of treatment including 5-FU), some uptake but not lots, no other obvious explanation, e.g., infection, smoking, etc.). I would be interested in their view of (1) no (or minimal) growth over such long periods (except maybe for 1/3); (2) any clues from appearance on scans (even at this size there usually are such); (3) are they suggesting chemo to test the nodules through shrinkage/stability, or because of worries about disseminated disease, or both? (4) is there clear lymphatic involvement, no evidence of same, or unknown? and (5) is there urgency to treat now, or can they wait to watch growth? (This last assumes you aren’t considering FOLFIRI. If you are I understand why they’d want to do that right away.) Another interesting question might be whether they consider this to be oligometastatic disease, or evidence thereof, or something else? That would give you more insight into their perspective/rationale than your health, but it might be worth exploring given the complexities of your situation.

[beach sunrise]

CONCLUSION:
1. Stable appearing indeterminate solid nodules within the bilateral lung fields, both
measuring up to 5 mm and exhibiting nonspecific low level radiotracer uptake, however
evaluation is limited due to size. Same for other tiny RUL and LUL nodules. Recommend close
attention on follow-up imaging.
2. No tracer avid local disease recurrence or distant metastatic disease.
CHEST:
ONCOLOGIC FINDINGS: Indeterminate. Stable appearing solid lung nodule within the right lower
lobe that measures approximately 5 mm (CT image 109), previously measured as 6 x 4 mm on recent
CT chest. This nodule demonstrates low level radiotracer activity, however PET evaluation is
limited due to small size of nodule. Additional solid lung nodule within the basal right middle
lobe also demonstrates low level radiotracer activity and measures approximately 5 mm (CT image
104 and max SUV 1.3), previously 5 mm on prior CT chest. This lesion is also too small for
accurate PET characterization. Tiny RUL and LUL nodules on CT images 80 and 79 are also stable
and below the size threshold for PET characterization. No new lung nodule.
This was Sept PET/CT

Dec CT
Multiple thin-walled interparenchymal cyst are perivascular or
demonstrate central vessels. Focal bronchiectasis in the inferior right upper lobe, not
significantly changed. Increased bronchial wall thickening and scattered mucus plugging of the
medial right lower lobe bronchi. Increased atelectasis is noted in the inferior lingula

Stable right upper lobe 5 mm nodule (series 2/image 48). Stable size of the 0.6 x 0.4 cm right
basilar nodule, however now with peripheral lucency (series 2/image 93). Slight interval
increase in size of the subpleural left upper lobe nodule, also with increased surrounding
nodular groundglass densities, now 7 mm (series 2/image 52), previously 5 mm (series 2/image
51). Stable left lower lobe 4 mm nodule adjacent to the major fissure (series 2/image 50).
LYMPH NODES: None enlarged.
Yesterday remeasurement of 7mm nodule was confirmed at 5.9mm not 7mm. Ya, I requested a 2nd review of nodule sizes and if any were doubling time and answer was no.

CONCLUSION:

1. Stable size of the right basilar nodule compared to recent CT from August 2022 (however
which had demonstrated enlargement from November 2021 to August 2022), with new peripheral
lucency/cavitation, indeterminate for metastasis but suspicious and continued close CT
surveillance is recommended. This is likely too small for PET/CT characterization.

2. Slight enlargement of the subpleural LUL nodule, also with nodular groundglass densities
indeterminate for metastasis and also likely too small for PET/CT characterization.

I had the faucci whatever during thanksgiving, knocked me down for 4 days. Had GT scan Dec 20.2022

[rp1954]

Looks like you’re always on top of things beach sunrise! I just wanted to add that my husband did Folfiri/Avastin for his many small lung nodules (I think the largest one was 5mm), he finished systemic chemo over 3 years ago and his lungs have been clear since, no recurrence there, so there’s something to be said for heavy chemo sometimes

Congratulations and thanks for sharing your husband's met sizes and CEA data over the years.
Any CA199 and LDH data would be valuable, along with peak MCV.

Perceptions and definitions
Do we mentally classify "heavy chemo" by dose intensity, the side effects and toxicity, the total dose, the toxicity to the cancer and tumor response, or some combination?

One oncologist classed my wife as heavily treated ( not exactly the same as "heavy chemo") after 10-11 months of our home brew with 3-4 dinky chemo pills and just starting with low dose leucovorin. Also she had had 800 - 1600 mg/day of biomarker targeted cimetidine, 45 mg menaquinone-4/day for 7 months and literally, kilograms of IV ascorbate, an anti HIF-1a and anti KRAS tx, along with a lot of nutraceuticals. We had not yet started celecoxib beyond days-2 weeks after surgery.
Perhaps ideally, extra heavy chemo might have 1-2 chemical treatments, 100% complete response, and no side effects.

I think it is fair to say that beach sunrise uses a nonstandard "heavy chemo", but not an ASCO/NCCN recommended cyclical heavy chemo nor does she have as much intolerance from toxicity, where her first oncologist failed at both with Folfox alone. It is true that we don't know her response to Folfiri + Avastin, Folfoxiri + Avastin or even Folfox + Avastin, where oncology take 2-3 swings at these series and hopes for at least one (often temporary) response, whatever you get.

[roadrunner]

Beach: Wow, this really does present some tough choices! I assume that you meant by “if any were doubling time” whether any reflected growth/doubling time generally indicative of CRC pulmonary mets. And their answer was “no.” That’s what it sounds like, anyway. So that’s good, at most you have very slow growth, but obviously this doesn’t rule out disease. It’s good they’re all small and (at least mostly) stable, but that makes everything uncertain, and I’m sure somewhat maddening.

[beach sunrise]

Claudine, it is helpful information about folfiri/avastin experience of your husband. Yall have been thru alot and also on top of things.

Rp, for my mind heavy chemo means side effects and toxicity to my body. Lowering immune system and the other side effects that can be terribly unpleasant and may never fully recover. I have a good plan now and lung surgeon even said that clearly if its mets that my protocol is keeping it slow growing. I went back to chrono dosing around Christmas and IVM 24mg every other day. CEA has definitely gone down (7pts) but I know its just staving off growth at this point. I just received two more TCMs from ND based on a couple of markers we watch. So, hopefully they will help until I get a good solid plan to get rid of these nodules before the surgery boat drifts away.

Roadrunner, I am def in the middle of SOC and outside SOC in terms of what to do and who can do it. I want them gone and just continue with ADAPT+++.
I did ask about doubling time that you suggested. The lung surgeon cut me off from most of the questions, He was super busy because he was behind. SMH
He asked about 2nd opinions and told him about Germany and one more from MSK different surgeon. He had never heard of Rolles and said it makes him curious so he will research it.

[roadrunner]

Other than expressing disappointment over impatience from your physician (this is important stuff to us patients, after all!), I don’t have too much more to add at this point. I hope you get an option (apparently SBRT at this point) that allows you to address these nodules. I would only say that if you go the SBRT route, make sure your you’re comfortable with your radiation oncologist (he/she should give you time and answers!). There are some risks inherent in the procedure (though usually it’s pretty safe), and dose and dosimetry considerations that can get pretty subtle. That is particularly true when it comes to nodules that are close to important vascular or pulmonary structures. The rad onc can make a real difference across the board.

[beach sunrise]

Thank you RR, you give me things to think about and discuss. I really appreciate it.
I appreciate all the advice and opinions that everyone has contributed to my case.

[Claudine]

for my mind heavy chemo means side effects and toxicity to my body. Lowering immune system and the other side effects that can be terribly unpleasant and may never fully recover.

For sure. DH has permanent neuropathy in his feet from Xelox (which didn't even work!). IMHO if you can avoid heavy chemo it's much better for your body as a whole. Looks like you only have a few nodules, so if SBRT is an option, it's way better!