CT Scan today

[skb]

Very upsetting to hear
Praying for you beach
This makes me think supplements don't even help much ;(
I'm on turkey tail, vitamin d, tumeric etc. I wonder if if even does anything?

Pagola44,
Please do not jump to the conclusion that supplements don't help much. Everyone's body biology and disease stage is different and it could have varying effectiveness on different people. Personally, I am not sure whether they help or not.

Regarding supplements, there is one thing I want to share with you though. And that is to try to ensure that the products we use are minimally tainted.
I saw this article on npr today about how the additional dye that vendors add on to turmeric was responsible for lead posioning-
https://www.npr.org/sections/goats-and- ... bangladesh

I asked my oncologist about Turkey tail mushrooms and his advice was that it could be a risk taking it during chemo because he does not know yet whether it enhances or reduces the effectiveness of chemotherapy. So I backed off although I wanted to take it. There was a Netflix show by name Fantastic Fungi. It seemed to advertize the healing and calming power of mushrooms.


The world cancer research international posted new guidance for people living withcolorectal cancer here-
https://www.wcrf.org/latest/news-and-up ... al-cancer/
It says:
"People diagnosed with colorectal cancer should consider increasing their dietary intake of wholegrain foods, and reducing their sugary drink intake."

Good luck in your journey. Your journey is starting and I pray it does not get worse.

[zephyr]

Let me start with a disclaimer: I may not know what I'm talking about. That being said, if you decide to go back to Germany, you ~may~ want to consider discussing with Dr. Kern or another surgeon the complications of having multiple thoracotomies. My first two surgeries were in Germany and then I had a third one at MSK towards the end of Covid when I was less comfortable traveling internationally. During/after the third surgery, there were comments about getting around scar tissue from the prior surgeries. It's my understanding (and I could easily be wrong about this) that you can only go in so many times before it becomes too much of a mess to navigate. If that's correct, you may want to be more strategic in how you time a return to Coswig with the thought that this might be the last time Germany is an option. For example, and I'm just typing off the top of my head here, maybe you want to have a PET scan before you consider surgery, or maybe you want to have a minimum size of all nodules or something. This is not an issue for you but it might help show what I mean about being strategic: when I went, I had one small nodule in my right upper lobe that the former head of thoracic surgery at a major U.S. cancer center told me he didn't think he could identify and remove on its own (without taking a section). It was just too small. Dr. Kern was able to remove it but I got the feeling even he was a little surprised at his success. If I had gone to Germany with that tiny nodule thinking it might be my last chance with the laser, would I have waited until it was a little larger? Maybe...

Whatever decision you make, you'll have all of us supporting and cheering you on.

[skb]

zephyr,
I was studying your signature. Would you say that your lung nodules have been stable since you started the Folfox/Avastin regimen few years ago?

I am being hopeful that it would give me few more years if I am prescribed that regimen.

[zephyr]

zephyr,
I was studying your signature. Would you say that your lung nodules have been stable since you started the Folfox/Avastin regimen few years ago?

I am being hopeful that it would give me few more years if I am prescribed that regimen.

More like stable-ish. I've been bouncing between Folfiri/Avastin and Xeloda/Avastin. When we start to see too much progression on Xeloda/Avastin, then we switch back to Folfiri/Avastin to knock it down. I usually get a good response on Folfiri/Avastin but it wears me out after a while so then we switch back to Xeloda/Avastin which is very tolerable for me. So far I've been very lucky repeating treatments. All of that said, I have only the highest praise for my oncologist but I've also been working with a gifted FABNO naturopathic doc and with an awesome Chinese herbalist, and I believe those have been a large part of my success.

[roadrunner]

Zephyr:

I just wanted to comment on how inspiring your success is. That’s a lot of years, and it sounds like you’ve had at least a reasonable QOL despite all the chemo. I wish you many more good years!

[zephyr]

Zephyr:

I just wanted to comment on how inspiring your success is. That’s a lot of years, and it sounds like you’ve had at least a reasonable QOL despite all the chemo. I wish you many more good years!

Thank you, Roadrunner. Like everyone else, QOL ebbs and flows - and there have been some brutal lows - but overall, it's been good.

[Bianca10]

zephyr,
I was studying your signature. Would you say that your lung nodules have been stable since you started the Folfox/Avastin regimen few years ago?

I am being hopeful that it would give me few more years if I am prescribed that regimen.

More like stable-ish. I've been bouncing between Folfiri/Avastin and Xeloda/Avastin. When we start to see too much progression on Xeloda/Avastin, then we switch back to Folfiri/Avastin to knock it down. I usually get a good response on Folfiri/Avastin but it wears me out after a while so then we switch back to Xeloda/Avastin which is very tolerable for me. So far I've been very lucky repeating treatments. All of that said, I have only the highest praise for my oncologist but I've also been working with a gifted FABNO naturopathic doc and with an awesome Chinese herbalist, and I believe those have been a large part of my success.

If you don’t mind me asking, how long between switching between folfiri & xeolda have you had?

Not all consultants are too keen on rechallenging, and I haven’t heard of treatments being rechallenge multiple times so I’m really interested.
Normally they say at least a year off treatment before rechallenging it.

[zephyr]

If you don’t mind me asking, how long between switching between folfiri & xeolda have you had?

Not all consultants are too keen on rechallenging, and I haven’t heard of treatments being rechallenge multiple times so I’m really interested.
Normally they say at least a year off treatment before rechallenging it.

1-2 years. Twice there have been surgeries so I've been off all chemo for some period. This last time I went straight into Xeloda from Forfiri. I can usually get at least a year on Xeloda.

[claudine]

Zephyr, it's great to read this! My husband has been on Xeloda/Avastin since January, so far it's still effective (his CEA is stable around 8, it even dropped to 6.8 today). But I expect it'll stop working at some point. His onc seems ok with doing Folfiri/Avastin again if that happens; DH had it previously, stopped for surgery, not because he developed resistance to it. But onc wants to "save the big guns for when we really need them". Good to know it's been working for you, going back and forth between the two lines of treatment

Beach Sunrise - any recent developments?

[beach sunrise]

Thanks to everyone for all the support!
I will post a positive update tomorrow.

[beach sunrise]

I am sorry for posting the wrong scan results. Coming back from a mental break down among other things I put wrong date on both scans. Goodness, can't believe I got scans mixed up. Below is the right scan from 9-11-24. I think I'm headed for recurrence so changing things up and going to hit it hot and heavy. CEA 7.2
TECHNIQUE: CT Chest with contrast. Patient weight: 92 lbs. IV contrast: Omnipaque 350, 80 ml,
per protocol. Saline flush: 10 ml. IV contrast injection rate: 2 ml per sec. Scan delay: 35 sec
Scan field of view: 330 mm. DLP: 108.09 mGy cm.
FINDINGS:
STRUCTURED REPORT: CT Chest - Standard
LOWER NECK: Heterogeneous multinodular thyroid with mediastinal extension as before.
CHEST:
LINES AND TUBES: None.
ESOPHAGUS AND MEDIASTINUM: No abnormality.
LYMPH NODES: None enlarged.
CARDIOVASCULAR: No cardiomegaly or pericardial effusion.
Coronary Artery Calcification: Mild.
LUNGS, AIRWAYS AND PLEURA: Interval hypodense nodular densities at the site of previously
noted pulmonary nodules bilaterally (series 2 image 44, 49, 85) measuring up to 13 x 9 mm in
the superior segment of the left lower lobe (series 2 image 49). One of these in the right
middle lobe shows internal cystic/cavitary area with associated atelectasis (series 2 image 79,
75). Mildly irregular nodularity in the right upper lobe laterally with previously noted
discrete nodule showing interval decrease in size (series 2 image 46). Moderate centrilobular
emphysema bilaterally. Foci of mucous plugging bilaterally. Biapical lung scarring.
CHEST WALL AND MUSCULOSKELETAL: Sclerotic focus in the T5 vertebral body. Degenerative changes
in spine.
UPPER ABDOMEN: CT Abdomen reported separately.
CONCLUSION:
1. Interval hypodense nodular densities at the site of previously noted pulmonary nodules
bilaterally with one of these showing associated cystic component and atelectasis in the right
middle lobe. These are favored to represent treatment-related changes, less likely progression.
Correlate with PET scan.

REPORT OF EXAM:
EXAM: CT Abdomen and Pelvis w contrast
CLINICAL INFORMATION: Rectal cancer surveillance
COMPARISON: 12/20/2022.
TECHNIQUE: CT Abdomen and Pelvis w contrast. Patient weight: 92 lbs. IV contrast: Omnipaque
350, 80 ml, per protocol. Water: 8 oz. Saline flush: 10 ml. IV contrast injection rate: 2 ml
per sec. Scan delay: 70 sec Scan field of view: 330 mm. DLP: 321.92 mGy cm.
FINDINGS:
STRUCTURED REPORT: CT Abdomen Pelvis
ABDOMEN and PELVIS:
LIVER: Normal.
BILIARY TRACT: Mild extrahepatic biliary dilation with smooth tapering distally is unchanged
since August 2022.
GALLBLADDER: No abnormality.
PANCREAS: Normal.
SPLEEN: Normal.
ADRENALS: Normal.
KIDNEYS: Punctate nonobstructing left kidney stone. Small left renal cyst
LYMPH NODES: None enlarged.
STOMACH / SMALL BOWEL: No abnormality.
COLON / APPENDIX: Left hemiabdomen colostomy.
PERITONEUM / MESENTERY: Normal.
RETROPERITONEUM: Normal.
VESSELS: No significant abnormality.
URINARY BLADDER: Mildly distended.
REPRODUCTIVE ORGANS: No abnormality.
BODY WALL: Left hemiabdomen colostomy.
MUSCULOSKELETAL: No significant abnormality.
CONCLUSION:
No evidence of metastasis in the abdomen and pelvis.