In need of metastasis education

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Rock_Robster
Posts: 517
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: In need of metastasis education

Postby Rock_Robster » Wed Feb 12, 2020 11:21 pm

jsbsf wrote: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.

Hi jsbsf, as someone who had a clot (DVT), I can confirm this is absolutely right!

Actually cancer patients often have multiple factors for clotting risk, aka the 3 “C’s” - Cancer itself, Chemotherapy, and Catheters (ie from a port). Add to this that many ca patients have major abdominal surgery and are then immobile for a period, and you have very high clotting risk. Once you’ve had one clot, the chance of another is higher (the 4th “C”). Clots are the leading cause of death in cancer patients after the cancer itself, so they are not something to muck about with and any symptoms should be taken very seriously.

There is a theory (fairly well established I think) that the clotting mechanism is actually one of the processes in the body that cancer “hijacks” in order to metastasise. Single cells can’t form a solid tumour; they need to bind together somehow, and the clotting process is an ideal method. So by increasingly the “clottiness” of the blood (by making genetic changes which increase production of pro-coagulation factors), cancer makes it easier for it spread. There is some early suggestion that anticoagulation therapy may hence impair metastasis, but not enough to use it as standard (as it has it own risks). It did make me not mind taking all those clexane injections so much though...
38M Australia
10/2018 Dx RC, 12cm high
Mod diff, EMVI+ LVI+. 4 liver mets
pT3N1aM1a Stage IVa. MSS NRAS G13R
CEA: Oct-18= 12; Nov-18= 14, Mar-19= 2.4, Aug-19 <2.0, Mar-20=2.2, May-20=1.9, Jun-20=2.1, Sep-20: 2.1
11/18 FOLFOX x6
3/19 Liver resect
5/19 25x pelvic radiation; complete met. response
07/19 ULAR w ileo, 1/27 LN+
08/19 Found liver spot
08/19 FOLFOX x1, FOLFOXIRI x1, FOLFIRI x5
12/19 Liver resect
02/20 Ileo reversed
03/20 NED (PET+MRI)
06/20 NED (CT+MRI)
07/20 Clear scope
09/20 NED (PET)

jsbsf
Posts: 52
Joined: Sat Aug 24, 2019 6:01 am
Location: San Francisco

Re: In need of metastasis education

Postby jsbsf » Thu Feb 13, 2020 1:48 am

Hi rock_robster,

Very interesting! I was looking at your signature and you both have a lot in common. I believe his tumor is a bit lower, so low that at first, we believe he was destined for a permanent colostomy.

His treatment path seems practically identical to yours. He had only 2 liver mets that were very recently removed after 6 rounds of FOLFOX. One dissolved completely, and since it was deeper, was ablated with MWA. He’s in quite a bit of pain right now, and taking pain meds. His response has been very well, and all the doctors are surprised. The rectal tumor has shrunk so much, it can barely be felt, and showed up as a tiny fraction of what it was, originally. I don’t think it was even the size of a pea when last checked. It was originally over 5cm.

So, he was presented with the option of a robotic surgery which would be after more chemo and radiation. The surgeons agreed that he’s a good candidate for robotic surgery.

Just 4 days after his first chemo infusion his scans showed considerable growth on those 2 liver mets. But the radiologist was pleased (and surprised) to report no new mets were detected. Between the 3rd and 4th round of chemo they shrunk by about two thirds (I think of the largest size), and after the sixth round they were at about 10% in both size and activity of what they were originally. The oncologist seemed more impressed with the much smaller activity than of the much smaller sizes.

I feel like the shrinkage is very important, especially if they can be upgraded to operable from inoperable, but the key seems to be with getting a handle on metastasis.
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 1-6
10/4 Lg lvr met ~3.7cm (raised concern), pri tmr stable.
CEA: 10/13,12.5;10/27-12/8 btw 4.7 & 3.1
11/5 both lvr mets ~ 2/3 smaller.
12/17 PET: sm lvr met gone, remaining tmrs @10% of orig sz & actvty
Chemo break
2020
MWA 2/5, Lap resection 2/11
CEA: 3/1-5/31 btw 2.1&2.9
3/2 start FOLFOX 7-12
7/23-29 radiation
10/2/2020 NED

Claudine
Posts: 439
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: In need of metastasis education

Postby Claudine » Thu Feb 13, 2020 12:23 pm

The pathology report came in from DH's adrenalectomy. No big surprise, the analysis confirms its nature as a colon cancer met; the adjacent lymph node is clear though, which is a good thing. I really wonder why some mCRC spread to the lymph nodes, or (quite commonly) to the liver, and others don't.
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A
No primary (involuted?)
Lytic tumor L4 vertebrae, EBRT 04/18, SBRT 02/19
Resect small intestine 05/18 (no cancer - Crohn's)
Failed adjuvant Xelox
Folfiri + Avastin 03/19 to 01/20
6.7 cm left adrenal mass 03/19, successful resection 02/20
CEA since 03/19: high 58, low 3.2, now 24.1
Scan 03/19: Multiple small lung nodules, now gone
PET 04/20 uptake by L4
L3-L4-L5 fusion surgery and partial corpectomy 05/20
Scan 09/20: nothing to report

Lee
Posts: 6134
Joined: Sun Apr 16, 2006 4:09 pm

Re: In need of metastasis education

Postby Lee » Thu Feb 13, 2020 1:21 pm

My understanding colon cancer tend to metastasis in the liver and rectal cancer tends to metastasis to the lungs. This is not concrete but tends to be a general rule. Guess it has something to do with lymph nodes and blood stream flows.

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 16 years and counting!

Claudine
Posts: 439
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: In need of metastasis education

Postby Claudine » Thu Feb 13, 2020 1:34 pm

And since we never found DH's primary tumor we'll never really know! His metastasized to the spine first, then adrenal gland and lungs simultaneously. He's one of the "unusual types".
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A
No primary (involuted?)
Lytic tumor L4 vertebrae, EBRT 04/18, SBRT 02/19
Resect small intestine 05/18 (no cancer - Crohn's)
Failed adjuvant Xelox
Folfiri + Avastin 03/19 to 01/20
6.7 cm left adrenal mass 03/19, successful resection 02/20
CEA since 03/19: high 58, low 3.2, now 24.1
Scan 03/19: Multiple small lung nodules, now gone
PET 04/20 uptake by L4
L3-L4-L5 fusion surgery and partial corpectomy 05/20
Scan 09/20: nothing to report

Claudine
Posts: 439
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: In need of metastasis education

Postby Claudine » Thu Feb 13, 2020 1:37 pm

Here's an interesting article, which confirms what you were saying, Lee:

Pattern and Dynamics of Distant Metastases in Metastatic Colorectal Cancer - https://www.karger.com/Article/Fulltext/454687

"Both in colon and rectal cancer, the liver constituted the most frequent metastatic site, albeit the frequency in colon cancer (71%) exceeded the one in rectal cancer (60%). The difference was more pronounced for peritoneal involvement, which occurred six times more frequent in colon cancer. Of the patients with colon cancer, 23% were diagnosed with peritoneal carcinomatosis (vs. 4% in rectal cancer). In contrast, pulmonary metastases were about twice as frequent in rectal cancer compared to colon cancer (30 vs. 17%)."
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A
No primary (involuted?)
Lytic tumor L4 vertebrae, EBRT 04/18, SBRT 02/19
Resect small intestine 05/18 (no cancer - Crohn's)
Failed adjuvant Xelox
Folfiri + Avastin 03/19 to 01/20
6.7 cm left adrenal mass 03/19, successful resection 02/20
CEA since 03/19: high 58, low 3.2, now 24.1
Scan 03/19: Multiple small lung nodules, now gone
PET 04/20 uptake by L4
L3-L4-L5 fusion surgery and partial corpectomy 05/20
Scan 09/20: nothing to report

jsbsf
Posts: 52
Joined: Sat Aug 24, 2019 6:01 am
Location: San Francisco

Re: In need of metastasis education

Postby jsbsf » Fri Feb 14, 2020 1:06 am

That is very interesting about the distant sites where mets are more or less likely to occur. DH has very low rectal cancer, and the only mets were liver, one in either side. The first appeared on the far left side, where there’s a “tip”, so relatively easy to resect. The second was below the surface near the top on the right side, which was accessible with a needle down through the rib cage. That one actually disappeared completely after chemo, and was burned out with microwave ablation last week. We’re still waiting for pathology reports on the one that was resected Tuesday. The surgeon says it was so small they could remove three times the normal amount of margin to have better certainty they got everything. Fortunately, he hasn’t had any lung mets, but it’s good to be aware he’s at a greater risk, having rectal cancer.
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 1-6
10/4 Lg lvr met ~3.7cm (raised concern), pri tmr stable.
CEA: 10/13,12.5;10/27-12/8 btw 4.7 & 3.1
11/5 both lvr mets ~ 2/3 smaller.
12/17 PET: sm lvr met gone, remaining tmrs @10% of orig sz & actvty
Chemo break
2020
MWA 2/5, Lap resection 2/11
CEA: 3/1-5/31 btw 2.1&2.9
3/2 start FOLFOX 7-12
7/23-29 radiation
10/2/2020 NED

Cured
Posts: 569
Joined: Thu Nov 27, 2008 10:53 pm
Location: MO

Re: In need of metastasis education

Postby Cured » Tue Jun 02, 2020 9:13 am

Dear JSBSF, How is your husband doing now?

BLOOD THICKENING: When my wife had blood clots, including a PE, a Hematologist MD said that low oxygen level could cause platelets to get sticky. After that my wife did the Sleep Study and has used C_PAP each night, besides taking Warfarin.

Daily I take a 325mg Aspirin, Garlic Capsule which help thin my blood. Also Turmeric with black pepper. These actions seem benign.

I am anxious to hear of Your Husband’s health after taking Fenbendazole, +others who who have. Here at the Colon Club we would not be so bold as to say we have found a magic bullet, but to share things which may have helped while not harming.

In a 2008 study of Fenbendazole they found it raised the neutrophils in mice. Since my Neutrophils are scary-low now, I am poised to take the “dog-wormer” now. Even though the Onc doesn’t believe in it. (It only costs $14. Not $30,000 like chemo. I hate to say it, but there is lots of money made treating cancer.)
5-08:Stg 3 Rectal: 6/14 Nodes
Ace Surgn Remvd 90%Rectm,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 yrs
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, 2.3,1.7,2.2,5.7,5.3,2.3
12 rds Folfiri
Avastin evy 2 wks
Seizure Anti-seiz meds work-no driving for 6 mo
4-20PET: Lung spots=Chemo

jsbsf
Posts: 52
Joined: Sat Aug 24, 2019 6:01 am
Location: San Francisco

Re: In need of metastasis education

Postby jsbsf » Mon Sep 14, 2020 1:06 am

Hi Cured,

I am sorry for being very late to reply. I don’t receive notifications, and don’t visit the site as frequently as I have in the past. I hope your wife is doing well. I actually found your post searching “fenbendazole”.

DH completed his 12th round of FOLFOX, coincidentally, on 6/2. He had a 5 day course of radiation that ended on 7/29, I believe. The doctors are all surprised at how well he is doing. He will have an evaluation on the rectal tumor on 10/02.

The radiology doctor told him he has done extremely well and hinted that he didn’t think he even needed surgery on the primary tumor. The oncologist and colorectal surgeon are still pushing for surgery, however.

He has probably taken 4 “courses” of fenbendazole since late last year. We get the safeguard brand since it costs much less and has the same ingredients. By “course”, we get a box that has 4 weeks worth if you take 1g/day for 3 days per week. We completed the 2nd week today. I asked and he says he would like to make it more of a regular practice, so we will probably take a week break after this box, and resume the 3 day per week routine for quite some time.

He took cimetidine tablets (Tagamet) for months, but for some reason complained of knee pain that got pretty bad at one point. We stopped the Tagamet and the knee pain went away. So, we are very careful about that now. These supplements are supposedly all considered low in toxicity, but different people may experience different side effects.

We also have experimented with IP6 w/inositol. Not advocating any of this, but going into this with a stage IV, grim prognosis, we were ready to take some calculated risks.

Keep in mind we both take a 5g scoop of modified citrus pectin daily. He takes at least 1.5g of turkey tail. And we both take turmeric, vitamins b and d. He takes the fenbendazole in a spoon mixed with olive oil. Supposedly it works better with vitamin e.

We feel more at ease with taking the supplements now that he has been off chemo for more than 3 months.

We are very pleased with his progress. The radiation was a traumatic ordeal, but he has recovered well. They told him it’s very rare for stage 4 to be treated with radiation. I don’t understand the logic behind this, but they seem to think it shouldn’t be given unless/until they are confident there is no more cancer outside the primary tumor. Neither of us know how much of his progress , if any, was helped by the various supplements. We feel it’s all minimally improved his immune system. We never had a strict routine, and some days just took a centrum multivitamin. Neither of us has gotten sick. I take some of the supplements myself.

I wish you both the best. It’s taken a big emotional toll.
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 1-6
10/4 Lg lvr met ~3.7cm (raised concern), pri tmr stable.
CEA: 10/13,12.5;10/27-12/8 btw 4.7 & 3.1
11/5 both lvr mets ~ 2/3 smaller.
12/17 PET: sm lvr met gone, remaining tmrs @10% of orig sz & actvty
Chemo break
2020
MWA 2/5, Lap resection 2/11
CEA: 3/1-5/31 btw 2.1&2.9
3/2 start FOLFOX 7-12
7/23-29 radiation
10/2/2020 NED

polluxx
Posts: 50
Joined: Thu Jul 10, 2008 9:41 pm

Re: In need of metastasis education

Postby polluxx » Mon Sep 14, 2020 1:54 pm

I was actually diagnosed with colon cancer as a result of blood clots.

I went to the ER with shortness of breath as my only symptom. It turned out I had 5 pulmonary embolisms in 3 lobes of my lungs. At that time, they also discovered that I was extremely anemic. They told me right then that I most likely had cancer somewhere in my body, because the combination of blood clots and anemia are highly indicative of cancer.

It took a couple of days of testing to find the primary tumor. I’ve been on blood thinners to prevent any new blood clots, particularly because starting chemo made my blood even “stickier”.

Now that I’ve finished my 12 round of FolFox, I’m hoping to get off of all blood thinners. My oncologist believes that since cancer in the cecum does not usually have symptoms other than anemia, we might not have found it before it spread to distant organs if it hadn’t been for the blood clots.
Stage 3c
2/2020 Right colon hemicolectomy (invasive adenocarcinoma with micropillary features)
Moderately differentiated
Tumor size: 4.4 in greatest dimension Metastatic Carcinoma in 12 out of 28 lymph nodes
Extranodal extension identified
Margins negative

3/2020 Began 12 rounds of FolFox

Lee
Posts: 6134
Joined: Sun Apr 16, 2006 4:09 pm

Re: In need of metastasis education

Postby Lee » Mon Sep 14, 2020 6:40 pm

jsbsf wrote:Hi Cured,

The radiology doctor told him he has done extremely well and hinted that he didn’t think he even needed surgery on the primary tumor. The oncologist and colorectal surgeon are still pushing for surgery, however.

.


He should be listening to his colon rectal surgeon regarding whether he needs surgery or not.

There is an old saying, get surgical advice from a surgeon, not an oncologist. Get chemo advice from an oncologist, not a surgeon.

Good luck

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 16 years and counting!

Cured
Posts: 569
Joined: Thu Nov 27, 2008 10:53 pm
Location: MO

Re: In need of metastasis education

Postby Cured » Wed Sep 23, 2020 5:38 pm

Jsbsf: Lee is correct. Get with the colorectal surgeon and remove the tumor!!!

I had the same logic and asked if, after the radiation with 5FU chemo, if I could skip the surgery. They told me absolutely not. Good thing, as my tumor was “like an iceberg” barely noticeable on the colonoscopy but huge on the outside of the wall. Plus lymph nodes were affected and removed. My surgeon is very skillful and experienced, so he removed the bad stuff AND was able to save my rectum and reconnect me. Every colonoscopy I had after the surgery showed a clean and pink colon. Now you can’t even tell there was a new connection. 12 years later my colon is still clear. Each day I take a full 325mg Aspirin and Konsyl psyllium fiber as preventative measures.

They say once your lymph nodes are involved that micro-tumors circulate in your blood. Which is why you do adjunct chemo to “mop-up” the bastard tumors.
I was cured for 10 years- then tumors woke-up in my lungs. Don’t cry for me. Just take care of yourselves ASAP.
5-08:Stg 3 Rectal: 6/14 Nodes
Ace Surgn Remvd 90%Rectm,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 yrs
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, 2.3,1.7,2.2,5.7,5.3,2.3
12 rds Folfiri
Avastin evy 2 wks
Seizure Anti-seiz meds work-no driving for 6 mo
4-20PET: Lung spots=Chemo

jsbsf
Posts: 52
Joined: Sat Aug 24, 2019 6:01 am
Location: San Francisco

Re: In need of metastasis education

Postby jsbsf » Fri Oct 02, 2020 9:27 pm

Hi cured,

I’m sorry to hear about the lung mets after 10 years.

We received some positive news from the colorectal surgeon this afternoon. He assured us there was no cancer. I’m not sure how it’s possible to make that determination with an endoscopy. Maybe it can be done because of the extensive amount of radiation. The area was treated well beyond the area covered by the original tumor. It even covered the anus.

DH was given the W&W option. In fact, he asked what the surgeon would recommend, and even though the surgeon was prepared to perform surgery, he recommended W&W. His logic is that they will keep close watch, and if/when there would be a recurrence, they would operate very quickly. There is a good chance it will never come to that. If it does, unfortunately he would most likely need a permanent colostomy.

He’s decided to take the watch and wait option.
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 1-6
10/4 Lg lvr met ~3.7cm (raised concern), pri tmr stable.
CEA: 10/13,12.5;10/27-12/8 btw 4.7 & 3.1
11/5 both lvr mets ~ 2/3 smaller.
12/17 PET: sm lvr met gone, remaining tmrs @10% of orig sz & actvty
Chemo break
2020
MWA 2/5, Lap resection 2/11
CEA: 3/1-5/31 btw 2.1&2.9
3/2 start FOLFOX 7-12
7/23-29 radiation
10/2/2020 NED

DarknessEmbraced
Posts: 3500
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: In need of metastasis education

Postby DarknessEmbraced » Sat Oct 03, 2020 10:20 am

That's wonderful news! :)
Diagnosed 10/28/14, age 36
Colon Resection 11/20/14, LAR (no illeo)
Stage 2a colon cancer, T3NOMO
Lymph-vascular invasion undetermined
0/22 lymph nodes
No chemo, no radiation
Clear Colonoscopy 04/29/15
NED 10/20/15
Ischemic Colitis 01/21/16
NED 11/10/16
CT Scan moved up due to high CEA 08/21/17
NED 09/25/17
NED 12/21/18
Clear colonoscopy 09/23/19
Clear 5 year scans 11/21/19- Considered cured! :)

Cured
Posts: 569
Joined: Thu Nov 27, 2008 10:53 pm
Location: MO

Re: In need of metastasis education

Postby Cured » Tue Oct 06, 2020 7:58 pm

Jsbsf, I suggest you search for a highly skillful colorectal surgeon and ask for a second opinion. My surgeon is an old friend. He has saved peoples lives; and improved lives of many. I seen him tear-up when telling of people who saw him after a permanent colostomy; at which time he could not undo. Whereas if he had been the original surgeon he could have preserved their functions. Don’t let me pretend to be his Dr; and admit there are times the anus cannot be saved.

Let’s state that it is better to be alive with an ostemey - than to be no longer living with your family.

By God’s grace I have no pains and I live on. This Club has been a comfort and help.
5-08:Stg 3 Rectal: 6/14 Nodes
Ace Surgn Remvd 90%Rectm,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 yrs
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, 2.3,1.7,2.2,5.7,5.3,2.3
12 rds Folfiri
Avastin evy 2 wks
Seizure Anti-seiz meds work-no driving for 6 mo
4-20PET: Lung spots=Chemo


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