Pet scan

[Markdale]

I had a pet scan last week. I got the report today. There were 2 intensely avid lymph nodes in the prevascular and subcarinal region and also a shoulder acromion metastasis with an undisplaced fracture. I’ve had recent X-rays and a ct before this that showed nothing but bursitis. I don’t know what to do now. I feel a bone met changes everything. I still need to talk to my oncologist. Explains why my cea didn’t drop right down.
Im not sure what to do now.

[rp1954]

I had a pet scan last week. I got the report today. There were 2 intensely avid lymph nodes in the prevascular and subcarinal region and also a shoulder acromion metastasis with an undisplaced fracture. I’ve had recent X-rays and a ct before this that showed nothing but bursitis. I don’t know what to do now. I feel a bone met changes everything. I still need to talk to my oncologist. Explains why my cea didn’t drop right down.
Im not sure what to do now.

In the past, a single (infrequent) zoledronic acid treatment has been inserted for bone mets, along with chemo or other treatments.

Do you have ALP (alkaline phosphatase) in your liver panels? That panel is sometimes used to detect or track bone mets.
As for your rapid nodal met spread, I am first left wondering about your CA199 biology - got a date and a value? - vs inflammation history (e.g. ESR, CRP, NLR). Likewise vitamin D levels.

The difference between my wife and standard chemo was they were focused on "response" - (often temporary)shrinkage whereas we were focused on spread, activity suppression, and injury/comfort level for a longer marathon capability.

One thing that bemuses me, is that people on cyclical treatments often try to copy add-on daily treatments that were really developed as continuous treatments but expect same or better results.

Im not sure what to do now.

Showing better blood work would be helpful.
In our battle mode for continuous multisite treatments, I would still try to develop 4-5 key markers and panels for frequent blood draws (1-2-3 weeks depending on inconvenience, budget and the cancer's time pressures). I never got pressed to a 7 day repeat series, came closest at a few 9-10 days intervals, 14 - 21 days were my primary data mode under mild duress for formula changes.

[utahgal7]

Markdale,

I agree with everything that rp1954 has said. I just wanted to add a few things...

1)Along with elevated ALP levels, some patients with bone mets may have (not always) hypercalcemia (elevated blood calcium). Has your blood calcium been elevated recently?
2) Zoledronic acid is a good choice. Denosumab is another bisphosphonate for bone mets and is easier on the kidneys.
3) What is your pain level and sleeping pattern? When my father had bone mets, the pain was excruciating and unrelenting. The pain was worse at night and it was so bad, he was unable to sleep most nights. My dad was prescribed very strong opioids and had to go to the ER numerous times for pain management.

Some patients with bone mets are able to live years. Try not to get discouraged.

[rp1954]

1)Along with elevated ALP levels, some patients with bone mets may have (not always) hypercalcemia (elevated blood calcium). Has your blood calcium been elevated recently?

We used menatetrenone (the vitamin K2 isoform also known as MK4) to knock down hypercalcemia, and based on her lab tissue tests and blood data, to amplify 5FU - LV cell kill. Some earlier lab data in a paper had shown some 2 out of 4 lab lines of CRC cells inhibited by MK4 alone.
...

3) What is your pain level and sleeping pattern? When my father had bone mets, the pain was excruciating and unrelenting. The pain was worse at night and it was so bad, he was unable to sleep most nights. My dad was prescribed very strong opioids and had to go to the ER numerous times for pain management.

This sounds like one of the fight harder/smarter opportunities missed by "standard" protocols.
"worse at night" - decades of chronomodulation data says that ~3am is the time for a peak dose of 5FU.
So the xeloda chronomodulation papers have big doses at 12 midnight and about 7am - this is part of the last + in ADAPT++++ improvements, far beyond ADAPT. My wife's UFT chronomodulation was more primitive, with the biggest (5FU) dose first thing in the morning with more instant 5FU release from UFT. Standard xeloda protocols say, "duh, gee, what's up doc?"

My dad was prescribed very strong opioids and had to go to the ER numerous times for pain management.

Some CRC cancer cell lines are inhibited by high IVC levels and/or celecoxib. Since opioids stimulate cancer growth, we maximized IVC and NSAIDS (tramadol for surgery instead of morphine, then celecoxib afterwards) with 5FU. IVC relieves acute pain for some hours, and to a lesser degree, perhaps several days. Carrying 2+ cm LNs, long before we had her optimized chemo load, my wife was doing IVC 4x-5x a week, where she had relief or at least, a self driven strong urge. Once she was better after surgery #2 removed the LN, it was hard to keep her doing IVC 1.5x - 2x a week. Over the next 2 years we tested and improved her oral chemo formula more, for her personal biology, but still behind ADAPT++++ now in several aspects.

Situations like utahgal describes is what we worked hard to avoid, and figure out, if necessary, the pedal-to-the-metal off label versions to attack mets with oral formulations that have mild side effects.

[Markdale]

Thanks for the detailed responses.it’ll take some time to get the bloodwork but I have ready access to, ALP 96u/l calcium 2.5 mmol/l, these were part of regular panels I get. I haven’t measured ca199 in about year.
The problem I’m having with the shoulder met is I’ve had pain there for the last 4 months I’ve had an X-ray of the shoulder alone and an ultrasound not to mention standard ct scans but nothing was shown except for bursitis which they thought caused the pain I’ve had an injury in that area in the past. Eosinophilia was noted Jan 20 and I read eosinophillic granuloma can light up on pet scan. I’m probably just in denial.
The pain was really bad about 2 months ago right after surgery but has been getting better which I assumed would be the opposite if it was a met. Maybe the undisplaced fracture relieved pressure.

The nodal spread may not have been rapid they were mentioned in previous ct scans as slightly enlarged in 2022 they were approx 1cm and at time of pet scan 1.6 cm and 1.8cm I really should of pushed for a pet scan before surgery but maybe they would not have operated
I still need to have a chat to the oncologist, I got the report from my GP

[Markdale]

I have started radiation therapy to the shoulder to treat the metastasis and improve pain, I’m receiving 20gy over 5 fractions.
On the consent it said palliative radiotherapy to the bone. First time the word palliative has been used.

The oncologist was going to chat with the radiation oncologist about hitting the other 2 spots, she feels that it shouldn’t be a problem. They both said that it’ll be a while before the 2 in the mediastinum will cause any problem. Feels like they’re just trying to make me comfortable now.

The bloodwork is done by a few different companies it’s a bit difficult to get them all together sorry rp.

[roadrunner]

Mark: I don’t know too much about this area, but I recall that Claudine from this forum has been down this road with her husband, and while I’m not sure they achieved remission of his bone met, I believe it’s been controlled locally for a number of years. You may want to reach out to her to see if she might have helpful info. As always, I wish you the best!

[Markdale]

Thanks road runner.

[roadrunner]

Should’ve added: I have seen other stories of long-term survival with CRC bone metastases. And that’s not just about “quality time”— therapeutic technology is moving very fast at present, faster than pharmaceutical development (though even there developments appear to be accelerating, and may well do so exponentially in the next few years due to AI). I am not trying to create false optimism, but simply suggesting that “hanging around” for a few years might turn into something more. This WILL happen to many subsets of cancer patients over the next ten years, for sure. The trick is to be in the right subset, of course. But this kind of thing may give you something to shoot for.

In line with this, I’m attaching a 2022 paper on one promising modality, HIFU treatment of bone metastases. I just skimmed it, but it seems to offer some really significant potential benefits when compared with current SOC. It’s very detailed, and there may be exclusionary factors or other relevant considerations, but it might at least be worth a quick read.

https://www.mdpi.com/2072-6694/15/1/108

[utahgal7]

Markdale,

Have you had your vitamin D levels checked recently? The reason that I ask is that vitamin D may play a role in bone metastases from what I have read. I found this article to be interesting https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7695905/, particularly part 4 (Discussion) where it specifically mentions that deficiency of vitamin D can enhance secondary cancer growth in bone. I am NOT saying that if you raise your vitamin D levels that it will make the bone mets go away. But maybe a sufficient vitamin D level could delay more bone mets. IDK, it's something to consider.

I know that breast cancer patients that have higher vitamin D levels have less bone mets.

I hope radiation has been helpful in relieving your pain.

Take care,

Paige

[Markdale]

Thanks for the advice again roadrunner you’ve been a great help. Thanks for the article also. Finding out about the bone met really set me back, I’ve been trying to deal with the pain for a while and finding out everything I’ve done has been useless has been hard to deal with. I’m not giving up, I think I have a few options for the shoulder and they’ve agreed to hug the lymph nodes with radiation.

I haven’t been monitoring my Vit d levels but I’ve been taking supplements for a while, I will get them checked though.

Thank you mark

[Markdale]

I had a repeat pet scan after radiation to shoulder and lymph nodes. The scan was 4 weeks after radiation to lymph nodes and approx 5 weeks after radiation to shoulder. The lymph nodes showed a partial response to radiation with a decrease in suv but the shoulder showed an increase in suv uptake which I found weird. I’m hoping it’s to do with inflammation to the area and the body is trying to fix the pathological fracture. The pain associated with the shoulder met is much better so I assume it has had some effect.

[beach sunrise]

I am happy that youhad a response in lowering SUV and the pain is less.
Just weird how we are all different in the way cancer behaves but there are treatments for us.