In need of metastasis education

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jsbsf
Posts: 30
Joined: Sat Aug 24, 2019 6:01 am
Location: San Francisco

In need of metastasis education

Postby jsbsf » Sat Dec 28, 2019 10:03 am

I feel like after 4 months I still don’t understand some to the basics about what causes metastasis. There seem to be different approaches regarding treatment, and I would like to get a better understanding of the rationale behind those decisions. I understand why treatment depends on “stage” and has to be re-evaluated if it isn’t working or isn’t well tolerated

I would like to open a discussion that might help others who are also confused to better understand what is going on in their bodies. I know it’s another important aspect, however I am not as much concerned with mutations or specific differences, but “metastasis 101”. The other variables make it more complex than it already is. I’m interested in knowing what are the most likely causes of new tumors and how to minimize the risk.

In my case, there is a primary tumor and 2 (known) liver mets. There has been no surgery, but surgery is forthcoming.

The liver mets both had “clear margins” and after a month of preparation for chemo no new mets were discovered, although both mets had grown considerably.

Does “clear margins” mean they are less likely to generate new mets? Is the “source” of the liver mets most likely / definitively the primary tumor? I always wondered if/when a liver met might generate another met.

6 rounds of FOLFOX has been effective. One liver met has disappeared. The remaining liver met is at 10%, and the primary tumor is at 10%. Does that mean the margins are most likely at least as “clear” as from the beginning? I’m wondering if I can count on new mets forming being less likely. This question is another way of asking “why didn’t they remove the mets earlier?Did they know that if chemo worked they would immobilize them so they could resect them later?” In my case surgical removal was always on the table.

The primary tumor had lymph node activity but on the recent PET scan it no longer shows up. Has chemo “locked it down” so that it is incapable of creating new mets? I understand there are most likely cancer cells floating freely, but my question is “have new ones been minimized/ eliminated for the most part since the neoadjuvant chemo has been so effective?” Is it “stem” cells that emerge from a tumor? cancer cells? Or either/both? I feel like “stem” cells are the biggest danger since chemo doesn’t target them and they can become a cancer cell later down the road. Since FOLFOX has been effective, can I expect its same effectiveness to apply to the freely circulating cancer cells as it did on the tumors?

How effective is a strong immune system? After chemo it seems to be the only defense. A lot of people are NED, and a recurrence shows up later. Might not a stronger immune system have prevented that?

Another question is that I have read surgery is risky even if it’s not originally stage IV because it can cause a tumor to “leak” and spread cancer cells, I guess because it can pop open like a cyst spilling into the bloodstream, and this is the main reason for adjuvant chemo. I feel like it’s the main reason for neoadjuvant chemo: to reduce this risk.

In my case the primary tumor has been set aside for the most part, and the approach seems to be working from the “outside in”. For many others it seems to work in reverse order: they remove the primary tumor at the onset of treatment. But for me, they want to control the spread, and then come back and remove the original source. That seems to make a lot of sense, if my understanding is valid and the neoadjuvant has been keeping it in check.

A second opinion oncologist called this approach “sandwiching”, where they basically press the “spread” back toward the primary tumor.

So, after 6 rounds of FOLFOX, liver resection is after a 6 week break, followed by a 3 week recovery, followed by 6 more rounds along with radiation (it’s rectal), followed by surgery.

Another question I have is about lymph node involvement. I know it’s worse than no lymph node involvement, but does it just mean a way to spread? Or is that just a different way to spread? It seems like you can have a met at a distant organ with no lymph node involvement.

Thanks for reading all this and any input.
DH 61
2019
8/23 C-scopy, 5+cm mass. CEA:4.1
8/26 CT ~1cm lvr met?
9/6 PET: liver spot
9/16 MSS. MRI: 2 liver mets: 2.7 & 7mm
9/23 Port
9/30 Start FOLFOX
10/4 Lg lvr met ~3.7cm (raised concern), pri tmr stable.
CEA: 10/13,12.5;10/27,4.7;11/10,3.3; 11/24,3.1;12/8,3.3
11/5 both lvr mets ~ 2/3 smaller.
12/17 PET: sm lvr met gone, remaining tmrs @10% of orig sz & actvty
Chemo break: MWA 2/5, Lap resection 2/11

Claudine
Posts: 255
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: In need of metastasis education

Postby Claudine » Sat Dec 28, 2019 1:08 pm

Very interesting topic jsbsf, thank you for getting it going!

I’m not sure that I can answer any of your questions, but the more I read about cancer (and I’ve done a lot since the whole ordeal started a couple of years ago), the more I realize just how little we still know about it, despite all the research that’s going on. Metastatic spread being one of the mysteries. Why does some people have mets and not others, why in certain places? Is it all in one’s genetic makeup?

Take my husband, who’s a bit if an oddity on this forum. He may not even have CRC but small bowel adenocarcinoma, which is rare and treated like CRC; as far as i know he’s the only one (of active members) who had no primary. His oncologist’s theory is that it invaginated = was tiny and got destroyed by his immune system, but not before it had a chance to « spawn » and send cancer cells in his blood stream, one of which settled in his spine. Possibly by traveling through the Batson venous system. Radiation plus 6 rounds of adjuvant Xerox didn’t do their job and next thing we know, he’s got a large met in his adrenal gland - quite an uncommon site (compared to liver and lungs, although he also had multiple tiny lung nodules at the same time).

Why this spread pattern? Why no primary but mets? So many questions we’ll probably never get answers to! Meanwhile, after 18 rounds of Folfiri + Avastin, his cancer is deemed « under control » and he’s meeting on the 9th with an urologist to discuss laparoscopic adrenalectomy. After that it may be a phase of « wait and see », with a close eye on his lungs.

So, not a lot in common with your case - liver and lymph nodes are clear - but I’m also very interested in the topic. Without being overly pessimistic , my feeling is that I may be on this forum for a long time, with cancer returning over and over (but while hopefully remaining « under control »).
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A
No primary (involuted?)
Lytic tumor L4 vertebrae, EBRT radiation 04/18, SBRT 02/19
Resection small intestine 05/18 (no cancer found - Crohn's)
Failed adjuvant Xelox
Folfiri + Avastin since 03/19
6.7 cm left adrenal mass 03/19, 3.67 cm 12/19, successful resection 02/20
CEA since 03/19: high 58, low 3.2, now 10.2
Scan 03/19: Multiple small lung nodules up to 5mm
Scan 12/19: 2 calcified granulomas, one 1mm stable nodule

stu
Posts: 1259
Joined: Sat Aug 17, 2013 5:46 pm

Re: In need of metastasis education

Postby stu » Sat Dec 28, 2019 6:31 pm

I can’t answer too many either but it sounds as though you are having a great response to chemo . I think apart from the obvious reigning in of the primary tumour and spread by going straight to chemo also allows oncologists to see how your tumour responds . Why someone with the same cell type responds and others don’t Is such a mystery .

I think the immune system has a big role to play . My mum had her primary tumour removed a year into treatment . Her liver spread which was significant was not longer visible on her scans . The good margins part I think might be more a surgical consideration where they look to see who is operable and who is not . They need to get some margin in the resection to make it doable .

The lymph nodes is not so relevant when the spread has already occurred in my mind .

If the PET scan no longer has uptake that’s brilliant in terms of reduction but there could still be some remaining microscopic cells so surgery is still the gold standard for removal .

My mum had a lung met pop up after seven years . Her immune system must have been keeping it under control as it was all part of the original spread that managed to make its way from the primary and lodged in another part of her body .

Like Claudine I started to view this as more a long term situation . The discharge seemed elusive after ten years but my attitude to that has changed . I now see it as a giant safety net that keeps her well . She has even had the opportunity to grow older and develop age related problems .

Take care ,
Stu
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .

jsbsf
Posts: 30
Joined: Sat Aug 24, 2019 6:01 am
Location: San Francisco

Re: In need of metastasis education

Postby jsbsf » Sat Dec 28, 2019 8:20 pm

Thanks for your responses Claudine and Stu. It is very mysterious. I have a friend whose 77 year old father was recently diagnosed with a different type of cancer. It’s a less common blood cancer and his white blood cell count has skyrocketed into the hundreds of thousands. He was given about a month in September and decided to just let it run its course, and not undergo any form of treatment. He’s still alive and celebrating the holidays. It was so different from colon cancer. There’s really no way to operate.

I am actually a caregiver for my husband who is responding, in the oncologist’s words, “remarkable”. He meets different people with different cancers while getting an infusion. I think it’s one of the hardest parts for him because most people are so down. He isn’t even depressed, but it seems everyone in the infusion chairs have given up, and it’s hard to sit for hours with so many lonely, depressed people. One 48 year old man doesn’t even know what type of cancer he has. He noticed a severe abdominal pain while abroad in Spain (we are in the states), and came back here to find out that he has numerous tumors throughout his body. The second opinion was drastically different from the original one. The professionals don’t even know which tumor started the cascade of events. He has even undergone a blood transfusion.

My mother was diagnosed with colon cancer in 2002. It was stage 3. They quickly performed an operation to remove the tumor. I didn’t really understand anything at all at that time, even which chemo or radiation she was taking. She seemed to be doing fine around 2005 or 2006, but eventually they found liver mets, and there was never anymore surgery. So I imagine she was not operable once it spread to the liver. She continued taking chemo until 2012 when she opted out and went into hospice. Even then I didn’t understand the basics. She told me her CEA a few times but I hadn’t a clue if it was good or bad. Eventually, the chemo could no longer contain the liver mets and she died from some sort of release of toxins due to all the damage caused to a very weakened liver.

Our oncologist says the most important numbers for him are CEA and red blood cell count. He feels like the CEA is significant and if it levels off at a normal number, it’s a good indicator that the overall amount of cancer is under control.

This time, I feel like I came into this a lot more prepared - mainly because of this forum. Even though I still have a lot of questions, I feel like I dropped the ball with my mother. I didn’t even realize the metastasis was what would kill her. I always thought the primary tumor was the biggest concern and the little liver mets would just be taken care of with chemo. I feel so stupid now because I didn’t ask any questions or find out more. But this time I have a better handle.

I’m hoping this thread might someday contribute to helping someone, sometime down the road, the way so many posts from over the years have helped me.
DH 61
2019
8/23 C-scopy, 5+cm mass. CEA:4.1
8/26 CT ~1cm lvr met?
9/6 PET: liver spot
9/16 MSS. MRI: 2 liver mets: 2.7 & 7mm
9/23 Port
9/30 Start FOLFOX
10/4 Lg lvr met ~3.7cm (raised concern), pri tmr stable.
CEA: 10/13,12.5;10/27,4.7;11/10,3.3; 11/24,3.1;12/8,3.3
11/5 both lvr mets ~ 2/3 smaller.
12/17 PET: sm lvr met gone, remaining tmrs @10% of orig sz & actvty
Chemo break: MWA 2/5, Lap resection 2/11

User avatar
CRguy
Posts: 10093
Joined: Sun Feb 10, 2008 6:00 pm

Re: In need of metastasis education

Postby CRguy » Sat Dec 28, 2019 8:45 pm

At least a few million $$$$$$ questions here my friend !

Planning to post in later with my "IMO" 2 cents worth

Thanks for starting the topic
Cheers
CRguy
Caregiver x 4
Stage IV A rectal cancer/lung met
12 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

CF_69
Posts: 102
Joined: Sat Dec 22, 2018 9:44 pm

Re: In need of metastasis education

Postby CF_69 » Sat Dec 28, 2019 11:49 pm

I always thought clear margins referred to cancer free tissue on both sides of the tumor after it has been removed.

Cancer sucks.
47 at diagnosis
Distal sigmoid near rectosigmoid junction adjacent to upper rectum
Adenocarcinoma
2.8 x 1.8 x 3.5 cm
G2
T3N0M0 after pathology
CEA:
Dec 2018 - 1.9
September 2019 - 2.5
Xeloda / radiation x 25
Laparoscopic LAR April 2019
0 of 12 nodes
Stage 2A
4 cycles of adjuvant Xeloda
MRI on liver for 2mm hypodensity not suspicious.
Clear CT - September 2019

stu
Posts: 1259
Joined: Sat Aug 17, 2013 5:46 pm

Re: In need of metastasis education

Postby stu » Sun Dec 29, 2019 3:46 am

I think your right about the margins . Once the tumour is removed they always referred to having good margins of cancer free tissue around the tumour .

With the liver pre surgery they talked about getting good margins but interestingly enough mentioned that they only need a small margin with the liver unlike other areas . Anyone else been told this fact about the liver ?

Stu
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .

jsbsf
Posts: 30
Joined: Sat Aug 24, 2019 6:01 am
Location: San Francisco

Re: In need of metastasis education

Postby jsbsf » Wed Jan 08, 2020 3:56 pm

We had good news on Monday. DH met with his liver surgeon and she says the met that disappeared didn't even show on the MRI with contrast. So, she'll insert a probe and burn the area. The other one is so small, she can remove it with a laparoscopic procedure. She says that burning the area where the met was vs. surgically resecting it would produce the same results. So, he's eligible for much less invasive surgery.

She is pushing to schedule having the primary tumor removed at the same time. She says it's so small, it's ready to go, and he won't need a permanent colostomy. We were fully prepared for a permanent one. He may need a temporary one.

Previously, his oncologist recommended removing it after 6 more rounds of FOLFOX and a week of radiation. But I don't think he expected it would be so small, already. Everyone seems pretty amazed with how well he responded to the treatment.

The surgeon, along with other board certified surgeons, felt that having the primary one removed ASAP would eliminate one major unnecessary risk factor of new mets. There doesn't seem to be a compelling reason to postpone, but we'll see.

Somehow, I don't feel that with chemo being so effective, there's any risk of new mets suddenly appearing (while still on chemo), but I'm not going to second guess any of them. They know their stuff.

The best news ever is she was confident he's completely curable. I think that's worth sharing because I never expected with stage IV colon cancer, we'd receive this prognosis 4 1/2 months after diagnosis.

Here's to 2020, where I am looking forward to reading good news from everyone who is a member of this club, or taking care of someone they love.
DH 61
2019
8/23 C-scopy, 5+cm mass. CEA:4.1
8/26 CT ~1cm lvr met?
9/6 PET: liver spot
9/16 MSS. MRI: 2 liver mets: 2.7 & 7mm
9/23 Port
9/30 Start FOLFOX
10/4 Lg lvr met ~3.7cm (raised concern), pri tmr stable.
CEA: 10/13,12.5;10/27,4.7;11/10,3.3; 11/24,3.1;12/8,3.3
11/5 both lvr mets ~ 2/3 smaller.
12/17 PET: sm lvr met gone, remaining tmrs @10% of orig sz & actvty
Chemo break: MWA 2/5, Lap resection 2/11

Siti
Posts: 118
Joined: Thu Aug 01, 2019 10:58 am

Re: In need of metastasis education

Postby Siti » Wed Jan 08, 2020 6:50 pm

I am sooo so happy to read this news!! I really hope that your husband will have a curative outcome :) I wish that both of you will grow old together, as planned 90 :wink:
Wife of DH (54) DX on 5/7/19
CEA value: 1.2
T loc: Sigmoid
T type: Adenocarcinoma
T grade: G3
Pos LNs: 30/31
Wild Type for KRAS, NRAS and BRAF
19/7/19 PET-CT Scan: Distant lymph nodes (para-aorta, neck & hip), est. size 0.5-1.5cm.
22/7/19 Surgery: Laparoscopic Colon Resection
26/8/19 Chemo: CAPEOX + Avastin x 9
6/11/19 CT Scan after 3rd cycle, all nodes have shrunk! Yay!!

Supportivechild
Posts: 24
Joined: Thu Dec 26, 2019 12:45 am

Re: In need of metastasis education

Postby Supportivechild » Wed Jan 08, 2020 7:14 pm

I'm glad I located this post. Since my mother was DX I've been wanting to learn and much as possible. She's the complete opposite. She doesn't want to know anything because of her nerves. So far her CT abdomen / pelvis says her liver appears normal. We are just waiting on the chest CT and PET Scan. My question is in regards to the lymph nodes. If there's suspicious lymph nodes does that mean the cancer has spread and could possibly be in other places like the lungs? I haven't really been nervous but for some reason those 2 lymph nodes thru me off track. I always wondered if cancer had a specific travel route once it begins to spread or does it go wherever. Is that a weird question?

Jay
Caregiver of mother 56
12-13-19 DX Rectal Cancer
5 CM Mass
T1N1M0
2 suspicious lymph nodes 7x4mm 5x3 mm
Abdomen/Pelvis CT
MRI Rectal Screening
Chest CT
PET SCAN

Siti
Posts: 118
Joined: Thu Aug 01, 2019 10:58 am

Re: In need of metastasis education

Postby Siti » Wed Jan 08, 2020 7:50 pm

Supportivechild wrote:I'm glad I located this post. Since my mother was DX I've been wanting to learn and much as possible. She's the complete opposite. She doesn't want to know anything because of her nerves. So far her CT abdomen / pelvis says her liver appears normal. We are just waiting on the chest CT and PET Scan. My question is in regards to the lymph nodes. If there's suspicious lymph nodes does that mean the cancer has spread and could possibly be in other places like the lungs? I haven't really been nervous but for some reason those 2 lymph nodes thru me off track. I always wondered if cancer had a specific travel route once it begins to spread or does it go wherever. Is that a weird question?

Jay


Hey Jay,

It’s great that you’re looking after your mother, she’s very lucky to have you. My husband too prefers not to know in detail and I think it works well because his focus should be on recovery and not stress. I take in the stress, research and care so that we can manage this disease together as a team.

I think it’s best to wait for all your scan results to be back and then determine what’s the best next step. With regards to your question, cancer usually spread via the blood stream or lymphatic system. Let’s hope that in your mother’s case, the cancer has not spread so that she can be cured.

Siti
Wife of DH (54) DX on 5/7/19
CEA value: 1.2
T loc: Sigmoid
T type: Adenocarcinoma
T grade: G3
Pos LNs: 30/31
Wild Type for KRAS, NRAS and BRAF
19/7/19 PET-CT Scan: Distant lymph nodes (para-aorta, neck & hip), est. size 0.5-1.5cm.
22/7/19 Surgery: Laparoscopic Colon Resection
26/8/19 Chemo: CAPEOX + Avastin x 9
6/11/19 CT Scan after 3rd cycle, all nodes have shrunk! Yay!!

Supportivechild
Posts: 24
Joined: Thu Dec 26, 2019 12:45 am

Re: In need of metastasis education

Postby Supportivechild » Thu Jan 09, 2020 1:55 am

Siti wrote:
Supportivechild wrote:I'm glad I located this post. Since my mother was DX I've been wanting to learn and much as possible. She's the complete opposite. She doesn't want to know anything because of her nerves. So far her CT abdomen / pelvis says her liver appears normal. We are just waiting on the chest CT and PET Scan. My question is in regards to the lymph nodes. If there's suspicious lymph nodes does that mean the cancer has spread and could possibly be in other places like the lungs? I haven't really been nervous but for some reason those 2 lymph nodes thru me off track. I always wondered if cancer had a specific travel route once it begins to spread or does it go wherever. Is that a weird question?

Jay


Hey Jay,

It’s great that you’re looking after your mother, she’s very lucky to have you. My husband too prefers not to know in detail and I think it works well because his focus should be on recovery and not stress. I take in the stress, research and care so that we can manage this disease together as a team.

I think it’s best to wait for all your scan results to be back and then determine what’s the best next step. With regards to your question, cancer usually spread via the blood stream or lymphatic system. Let’s hope that in your mother’s case, the cancer has not spread so that she can be cured.

Siti


Thank you for your response. When I saw the MRI results saying that 2 nodes were suspicious I started to think the worse. I sure hope and pray she can be cured. Like you I literally do everything so she can focus and be stress free as much as possible.

Jay
Caregiver of mother 56
12-13-19 DX Rectal Cancer
5 CM Mass
T1N1M0
2 suspicious lymph nodes 7x4mm 5x3 mm
Abdomen/Pelvis CT
MRI Rectal Screening
Chest CT
PET SCAN

jsbsf
Posts: 30
Joined: Sat Aug 24, 2019 6:01 am
Location: San Francisco

Re: In need of metastasis education

Postby jsbsf » Thu Jan 09, 2020 10:01 am

Thank you Siti. I hope your husband is getting some good news and that you’re both staying positive. One of the reasons I don’t want to know the details is I’m afraid it might impact me negatively. So I didn’t really know about lymph node involvement until very recently. When CEA spiked early during treatment (went from 4.1 to 12.5) I didn’t know until it went back down to 4.7. So not knowing the bad news until later when there was improvement has helped emotionally.

Jay, I was where you are not long ago and the beginning was the scariest time for me. The first month was hardest because they would spend time with tests and scans, and there was no treatment until after they learned more. I learned a lot here. At first I focused on supplements. These were some I studied: turkey tail (psk), cimetidine (Tagamet), modified citrus pectin (MCP), and ip6 with inositol, turmeric (curcurmin), green tea extract, and aspirin. Search for some of these keywords and you’ll find there were some late stage colorectal cancer survivors who have been NED for years. I know a lot of people frown on it, but I kept an open mind and bought the book by Jane McCleland “how to starve cancer”. One supplement worth researching is berberine. And Joe Tippins used fenbendazole. I’m not recommending to take any of these but to learn about them. My 2nd opinion oncologist really liked what she knew about PSK and indirectly recommended it. Search for Paul Stamets on YouTube and watch his video. Unfortunately, most oncologists will not want your mother taking supplements, but I feel they like to err on the side of caution and often don’t have specific reasons.

It’s very important to maintain as best of an immune system as possible and that during chemo certain numbers remain within range. Our oncologist focused on red blood cell count and CEA.

Our protocol was FOLFOX, and doctors all stressed how important it is to feel better during recovery week. If you feel better it’s a sure sign the treatment is working. There’s a Facebook group that recommends “icing” during FOLFOX. My husband did get cold sensitivity after each of the first five rounds. On the sixth he held a glass of ice water the entire time and says he didn’t have cold sensitivity that time.
DH 61
2019
8/23 C-scopy, 5+cm mass. CEA:4.1
8/26 CT ~1cm lvr met?
9/6 PET: liver spot
9/16 MSS. MRI: 2 liver mets: 2.7 & 7mm
9/23 Port
9/30 Start FOLFOX
10/4 Lg lvr met ~3.7cm (raised concern), pri tmr stable.
CEA: 10/13,12.5;10/27,4.7;11/10,3.3; 11/24,3.1;12/8,3.3
11/5 both lvr mets ~ 2/3 smaller.
12/17 PET: sm lvr met gone, remaining tmrs @10% of orig sz & actvty
Chemo break: MWA 2/5, Lap resection 2/11

Cured
Posts: 544
Joined: Thu Nov 27, 2008 10:53 pm
Location: MO

Re: In need of metastasis education

Postby Cured » Tue Jan 28, 2020 3:45 pm

Earlier in this string, there was a question on metastic process. My surgeon says that once lymph nodes are involved, micro-tumors are in your bloodstream. Adjunct Chemo is designed to go and get these. FOLFOX and Folfiri do this work.

Offering advice here is always tough, because:
A. What works for one person may not work for another.
B. I pray and trust that I will be healed. (Personally I was cured for 10 years)
C. Doctors may encourage, but most often they worse-case in explaining to the patients. One even said to me "I only treat Cancer - I don't cure it"
D. So your Oncologist may be happy for you that your cancer is reduced - or that you have No Evidence of Disease - but they seldom pronounce that one is cured.

I have read here, in the Club, where someone posts that all is good and they are done - only to see that they are scheduled for surgery a few weeks later. I really come here to encourage people. But hate to provide false hope.

You mentioned Fenbendasole, the Dog Wormer that is showing amazing curative affects for some. We recently met a man who is taking this to good effect. His son-in-law, who we were talking to, is an MD (an ER specialist). This MD recommended the dog wormer. The guy taking it is 83 and in his second battle with cancer, after it causing him to lose his larynx. I just read www.mycancerstory.rocks where Joe supposedly cured himself with the wormer after the Oncs gave him a 1% chance of survival. It is worth reading and the related Blog. I am doing good now, but if the cancer starts to spread, I may try the FZ. But I pray and trust that C will never get the upper hand.
5-08:Stg 3 Rectal: 6/14 Nodes
Ace Surgeon Remvd 90%Rectum,lots of Colon-Full Incision
Ileo Rev'd 6 Mos.
Radiatn+5fu Pre-Surgery
FOLFOX 8 CyclDone 1-09
Clear Scope 8-17; CEA 2-18
Glory to God! Healed by prayers of many: for 10 years
7-18: tumor pressing against brain Removed
Metastatic to lung. CEA 6.9
Folfiri
CEA to 4.5 after 1 chemo
After 8rds CEA 3
CEA 1.8, 2.3,1.7,2.2
12 rds Folfiri
Avastin evy 3 wks
Had Seizure Anti-seizure meds work-no driving for 6 months
Neuro allows me to drive again 0 meds

jsbsf
Posts: 30
Joined: Sat Aug 24, 2019 6:01 am
Location: San Francisco

Re: In need of metastasis education

Postby jsbsf » Wed Feb 12, 2020 11:00 pm

Thanks cured. We have tried fenben too. Husband is doing very well, and we are not sure which treatment or combination of treatments is making the biggest difference. He did a 4 week 3 days on 4 days off regimen once. He started a second 4 week try, but just had surgery yesterday so didn’t do the 4th week.

After yesterday’s surgery, today a nurse told him something interesting, and I’m not sure how many people are aware. I’ve read a lot, but didn’t know this. He had a laparoscopic liver resection where the one remaining met was removed (liver is now cancer free. Yay!). His surgeon wanted to keep him overnight, even though the surgery went very well. There was some miscommunication or misunderstanding, because a (different) nurse told me they noticed what appeared to be a blood clot and wanted to do a ct scan.

This morning, before he was released, he asked about his ct scan and the blood clot. This nurse said there was no blood clot (there never was). The ct scan was a precaution, because cancer patients are more susceptible to blood clots than non-cancer patients. She went on to say the blood has properties that make it “stickier”, and they wanted to rule out any blood clots before sending him home. She said the stickier blood clots more easily, but also provides a mechanism that allows the cancer cells to lodge, clump together and form tumors.

What seems unknown is why the blood is different, and it seems the cancer cells either are the reason, or contribute to it somehow. One thing we are very excited about is that after almost six months of treatment and scans, no new mets have been found.
DH 61
2019
8/23 C-scopy, 5+cm mass. CEA:4.1
8/26 CT ~1cm lvr met?
9/6 PET: liver spot
9/16 MSS. MRI: 2 liver mets: 2.7 & 7mm
9/23 Port
9/30 Start FOLFOX
10/4 Lg lvr met ~3.7cm (raised concern), pri tmr stable.
CEA: 10/13,12.5;10/27,4.7;11/10,3.3; 11/24,3.1;12/8,3.3
11/5 both lvr mets ~ 2/3 smaller.
12/17 PET: sm lvr met gone, remaining tmrs @10% of orig sz & actvty
Chemo break: MWA 2/5, Lap resection 2/11


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