It has come back...in the LNs...

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lovelife789
Posts: 141
Joined: Thu Aug 24, 2017 5:28 am

It has come back...in the LNs...

Postby lovelife789 » Tue May 28, 2019 10:10 am

:cry: I haven't been posting as much, but I have been reading and have kept everyone here in my thoughts (in case prayers are not for everyone)...

Got the PET report today, after it being clear for 10 months, it came back to hit me at liver 1.1cmx 1.1cm, one suspicious paraaortic LN and one suspicious near iliac and one suspicious one near thorax. They could not see the size only the SUV uptake was around 3.5-4.5. Was told I need to be on chemo for life. :cry: :cry:

The strange part is my CEA has always been a great indicator....in my last lung met, it did trend upwards just not exceeding the >5 range. This time it actually trend down. 1.1>1.0>0.9. did anyone's CEA was a good indicator but was not working all of a sudden?

I'm worried about Paraaortic LN, I saw someone had it removed before but did it help? Chemo for life isn't good, but I will take it if that's my only option. Anybody has any experience to share? :cry: :cry:

I'm still in shock... :? :? :( :( :(
F/38 - Dx 8 Mar 17, CEA 189.5
Stage IV Sig. Colon, Liver mets, T3N0M1a, KRAS NRAS Wild, G2=Mod. differentiated
3/17- 6/17 - 6 rounds of FOLFOX + Erbitux - CEA 2.5
7/17 - 1st Liver resect/Colon/Gall, all clear margin
8/17 - 2nd Liver resec
9-12/17' - completed 13 rounds of FOLFOX - CEA 1.0
1/18 - 6/30 - NED
6/30 - PET SCAN showed a lung nodule that grew from 5mm to 8mm - CEA 1.0
8/30 - VATs
8/30 - 4/30 - NED
5/28 - uptake seen in 1 x PALN, 1x common iliac, cloudy in Liver
FOLFIRI + Avastin

Claudine
Posts: 120
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: It has come back...in the LNs...

Postby Claudine » Tue May 28, 2019 11:01 am

I am so very sorry to read this, Lovelife. Chemo for life isn't a very pleasant prospect, but I guess it all depends on how well you tolerate it? A colleague of mine is starting her 6th year (small bowel cancer with an inoperable met near her pelvis). She gets an infusion every month and is able to maintain great QoL (works fulls time, etc). There's so much research going on for mCRC right now that one can always hope that a better cure will eventually be found - hang in there!

Claudine
Wife of Dx 04/2018 (51 yo). MSS, KRAS mutated G12A
No primary, lytic tumor L4 vertebrae, CEA 10
Radiation 04/2018
Resection small intestine 05/18 (no cancer found - Krohn's disease)
Xelox * 6, 05/2018 to 10/2018
6.7 cm left adrenal mass 03/14/2019, 4.4 cm 05/21, 4.1 cm 09/16
SBRT L4 02/2019
Folfiri + Avastin
CEA since 03/15: 58, 17, 10, 6.4, 5, 4.8, 4.2, 3.6, 3.2, 3.3, 3.2, 3.7, 4.3, 4.2, 4.2,
Scan 03/14: Multiple small lung nodules
Scan 05/21: shrinking
Scan 09/16: lungs show no abnormalities (YAY!!!)

lovelife789
Posts: 141
Joined: Thu Aug 24, 2017 5:28 am

Re: It has come back...in the LNs...

Postby lovelife789 » Tue May 28, 2019 11:35 am

Claudine wrote:I am so very sorry to read this, Lovelife. Chemo for life isn't a very pleasant prospect, but I guess it all depends on how well you tolerate it? A colleague of mine is starting her 6th year (small bowel cancer with an inoperable met near her pelvis). She gets an infusion every month and is able to maintain great QoL (works fulls time, etc). There's so much research going on for mCRC right now that one can always hope that a better cure will eventually be found - hang in there!

Claudine


Thanks Claudine. That story of your colleague is encouraging. Though I was told Folfiri is not easy, I have had FolFox and it was perfectly fine with me.

I read your signature on your DH, you two are in my thoughts too!!!
F/38 - Dx 8 Mar 17, CEA 189.5
Stage IV Sig. Colon, Liver mets, T3N0M1a, KRAS NRAS Wild, G2=Mod. differentiated
3/17- 6/17 - 6 rounds of FOLFOX + Erbitux - CEA 2.5
7/17 - 1st Liver resect/Colon/Gall, all clear margin
8/17 - 2nd Liver resec
9-12/17' - completed 13 rounds of FOLFOX - CEA 1.0
1/18 - 6/30 - NED
6/30 - PET SCAN showed a lung nodule that grew from 5mm to 8mm - CEA 1.0
8/30 - VATs
8/30 - 4/30 - NED
5/28 - uptake seen in 1 x PALN, 1x common iliac, cloudy in Liver
FOLFIRI + Avastin

rp1954
Posts: 1521
Joined: Mon Jun 13, 2011 1:13 am

Re: It has come back...in the LNs...

Postby rp1954 » Tue May 28, 2019 2:23 pm

lovelife789 wrote:Got the PET report today, after it being clear for 10 months, it came back to hit me at liver 1.1cmx 1.1cm, one suspicious paraaortic LN and one suspicious near iliac and one suspicious one near thorax....
… I'm worried about Paraaortic LN, I saw someone had it removed before but did it help?

We used a series of nicer chemo and surgeries to eventually weed out enough mets so that my "chemo forever" wife has been able to stay off chemo this past year. The other part was to achieve her daily chemo+chemistry with a great quality of life for 8 years while on immunochemo. We had to find ways to improve on various standard practices and personalize her treatments - some by borrowing others' practices and techniques, others by finding current papers, and natural/nutritional medicine.

Many things are possible but require special effort, including better doctors' cooperation and best efforts to go beyond overworn, everyday answers. Patients have to be able to leap some obstacles too.

The strange part is my CEA has always been a great indicator....in my last lung met, it did trend upwards just not exceeding the >5 range. This time it actually trend down. 1.1>1.0>0.9. did anyone's CEA was a good indicator but was not working all of a sudden?

We had later events that appeared to shift the cancer markers' degree of response amongst CEA, CA199 and AFP, perhaps individual lesions shedding different levels of markers.
Also the other blood chemistry and extra but common labs can contain important hints and useful information if inflammation and chemo damage can be kept under control. I've posted much about our basic bloodwork goals and experience.

Chemo for life isn't good, but I will take it if that's my only option.

All chemo has some side effects but the degree of effects, and outcomes, amongst chemistries varies wildly. Even small improvements can make some big differences.
watchful, active researcher and caregiver for stage IVb/c CC. surgeries 4/10 sigmoid etc & 5/11 para-aortic LN cluster; 8 yrs immuno-Chemo for mCRC; now no chemo
most of 2010 Life Extension recommendations and possibilities + more, some (much) higher, peaking ~2011-12, taper to almost nothing mid 2018, mostly IV C

Brearmstrong
Posts: 85
Joined: Sun Mar 26, 2017 3:24 pm
Location: CT

Re: It has come back...in the LNs...

Postby Brearmstrong » Tue May 28, 2019 4:35 pm

Hi there. Sorry to hear your news but wanted to reach out. I am one of those that had high SUV uptake in para aortic nodes and had them removed. I have been NED since last May but also on chemo for life. It is doable!
45 F Jan 17 2 sons
tumor appendix/colon
Muc Adeno 4cm
mod diff G2 T4aN2
nodes 8/50
CEA 4.6 after surgery <.05
KRAS G12D MSS
FOLFOX Apr-sep 17
Clean CT Jul 2017 lung 4mm, clean CT oct 17, CEA 3.4, nov 17 8.1. May 18 2.3,1.0,1.3, 1.3, 1.0, 2.3, 2.2, 2.1,2.2
Oct 2017 clean CT
Nov 17 PET para aortic nodes Stage IV
Folfori w/avastin Dec 17 CEA 7.1
May 18- surgery to remove nodes- 5 positive xeloda continues
Aug 18-CT NED Clear CT's Nov 18, Feb 19, May 19, Aug 19

jep
Posts: 174
Joined: Sun Jun 11, 2017 7:45 pm

Re: It has come back...in the LNs...

Postby jep » Tue May 28, 2019 7:22 pm

Hi Lovelife,
My husband got similar news in October....he also has paraaortic nodes...1 was biopsied and is cancerous....he did a second round of chemo without any real change....his surgeon and oncologist (and the tumor board) all agree that surgery is his best option....that will happen in mid August and we're hoping to have nothing but positive news to share with you and everyone here!! He has to finish his 6 weeks of xeloda and radiation (for a small spot on his colon), rest up for six weeks and then head in for a second surgery...has your doc mentioned doing a biopsy? Praying for you and everyone here!
jep
Wife of DH (47) Stage IV CC on 5/16/17
T Loc: recto-sigmoid
T type: Adenocarcinoma
T size: 7.4 cm
T grade: G3
TNM code: T3N2M1
Pos LNs: 8 out of 20
Baseline CEA value: .9
LVI: present
Perineural invasion: present
LAR margins: clear (w/in microns)
Folfox (8/17-1/18)
Scope 6/18 - CLEAR! - 2 polyps removed
PET 10/17/18: 3 pos LNs
Irinotecan + Vectobix (started in 11/18)
CEA: 1.7 (2/19)
Xeloda + radiation (5/19)
Surgery scheduled: 8/21/19 (surgery aborted)

lovelife789
Posts: 141
Joined: Thu Aug 24, 2017 5:28 am

Re: It has come back...in the LNs...

Postby lovelife789 » Tue May 28, 2019 11:58 pm

jep wrote:Hi Lovelife,
My husband got similar news in October....he also has paraaortic nodes...1 was biopsied and is cancerous....he did a second round of chemo without any real change....his surgeon and oncologist (and the tumor board) all agree that surgery is his best option....that will happen in mid August and we're hoping to have nothing but positive news to share with you and everyone here!! He has to finish his 6 weeks of xeloda and radiation (for a small spot on his colon), rest up for six weeks and then head in for a second surgery...has your doc mentioned doing a biopsy? Praying for you and everyone here!
jep


I'm praying for your husband too. These lymph nodes are so annoying!

Did your husband's scan reveal the node's exact location and how close they are to the main artery? Mine was blurry, so it's not easy to tell until they attempt to remove it. I will commence folfiri tommorrow with Avastin, not sure about whether I will respond to it. I'm amazed your husband gets to know the chemo wasn't working only after 2 rounds, I will only know when I do my next scan in Aug. :| :| :|

I pray for the surgery of your husband!
F/38 - Dx 8 Mar 17, CEA 189.5
Stage IV Sig. Colon, Liver mets, T3N0M1a, KRAS NRAS Wild, G2=Mod. differentiated
3/17- 6/17 - 6 rounds of FOLFOX + Erbitux - CEA 2.5
7/17 - 1st Liver resect/Colon/Gall, all clear margin
8/17 - 2nd Liver resec
9-12/17' - completed 13 rounds of FOLFOX - CEA 1.0
1/18 - 6/30 - NED
6/30 - PET SCAN showed a lung nodule that grew from 5mm to 8mm - CEA 1.0
8/30 - VATs
8/30 - 4/30 - NED
5/28 - uptake seen in 1 x PALN, 1x common iliac, cloudy in Liver
FOLFIRI + Avastin

lovelife789
Posts: 141
Joined: Thu Aug 24, 2017 5:28 am

Re: It has come back...in the LNs...

Postby lovelife789 » Wed May 29, 2019 12:04 am

Brearmstrong wrote:Hi there. Sorry to hear your news but wanted to reach out. I am one of those that had high SUV uptake in para aortic nodes and had them removed. I have been NED since last May but also on chemo for life. It is doable!


Hey brearmstrong,

Have been reading your posts too! Sometimes I feel bad not contributing more to the forum but I knew I needed a pseudo-normalcy without any mCRC info day and night at that time.

Did your surgeon comment on the surgical difficulties? Where were the paraaortic LN? Was it hard to remove? I was told noone would remove those nodes given its proximity to the artery. I asked about radiation as well, not sure if it's applicable to me... Just a thought. :|

I wish you NED forever!
F/38 - Dx 8 Mar 17, CEA 189.5
Stage IV Sig. Colon, Liver mets, T3N0M1a, KRAS NRAS Wild, G2=Mod. differentiated
3/17- 6/17 - 6 rounds of FOLFOX + Erbitux - CEA 2.5
7/17 - 1st Liver resect/Colon/Gall, all clear margin
8/17 - 2nd Liver resec
9-12/17' - completed 13 rounds of FOLFOX - CEA 1.0
1/18 - 6/30 - NED
6/30 - PET SCAN showed a lung nodule that grew from 5mm to 8mm - CEA 1.0
8/30 - VATs
8/30 - 4/30 - NED
5/28 - uptake seen in 1 x PALN, 1x common iliac, cloudy in Liver
FOLFIRI + Avastin

jep
Posts: 174
Joined: Sun Jun 11, 2017 7:45 pm

Re: It has come back...in the LNs...

Postby jep » Wed May 29, 2019 4:31 am

lovelife789 wrote:
jep wrote:Hi Lovelife,
My husband got similar news in October....he also has paraaortic nodes...1 was biopsied and is cancerous....he did a second round of chemo without any real change....his surgeon and oncologist (and the tumor board) all agree that surgery is his best option....that will happen in mid August and we're hoping to have nothing but positive news to share with you and everyone here!! He has to finish his 6 weeks of xeloda and radiation (for a small spot on his colon), rest up for six weeks and then head in for a second surgery...has your doc mentioned doing a biopsy? Praying for you and everyone here!
jep


I'm praying for your husband too. These lymph nodes are so annoying!

Did your husband's scan reveal the node's exact location and how close they are to the main artery? Mine was blurry, so it's not easy to tell until they attempt to remove it. I will commence folfiri tommorrow with Avastin, not sure about whether I will respond to it. I'm amazed your husband gets to know the chemo wasn't working only after 2 rounds, I will only know when I do my next scan in Aug. :| :| :|

I pray for the surgery of your husband!


Lovelife,
I just want to clarify that it was after 6 months of chemo that we realized the nodes hadn't gotten any smaller . . . his largest node (the one that was biopsied) is snuggled between his aorta and some other important vessels . . . his surgeon said the procedure is risky but doable :shock: He is also bringing in a vascular surgeon to assist in the operation as needed. It's pretty scary, but my husband feels good about it and trusts his surgeon, so this is the plan . . .
jep
Wife of DH (47) Stage IV CC on 5/16/17
T Loc: recto-sigmoid
T type: Adenocarcinoma
T size: 7.4 cm
T grade: G3
TNM code: T3N2M1
Pos LNs: 8 out of 20
Baseline CEA value: .9
LVI: present
Perineural invasion: present
LAR margins: clear (w/in microns)
Folfox (8/17-1/18)
Scope 6/18 - CLEAR! - 2 polyps removed
PET 10/17/18: 3 pos LNs
Irinotecan + Vectobix (started in 11/18)
CEA: 1.7 (2/19)
Xeloda + radiation (5/19)
Surgery scheduled: 8/21/19 (surgery aborted)

lovelife789
Posts: 141
Joined: Thu Aug 24, 2017 5:28 am

Re: It has come back...in the LNs...

Postby lovelife789 » Mon Jun 03, 2019 1:54 am

Hi rp1954,

Thanks for replying. I was reading through your comments a few times. Pardon me for not having English as my first language, may I ask what this part actually means?

rp1954 wrote:We had later events that appeared to shift the cancer markers' degree of response amongst CEA, CA199 and AFP, perhaps individual lesions shedding different levels of markers.
Also the other blood chemistry and extra but common labs can contain important hints and useful information if inflammation and chemo damage can be kept under control. I've posted much about our basic bloodwork goals and experience.


You wife can stay off chemo for the past year is great!!! :D :D :D :D

My situation is kind of murky...

1) So I got my PET scan report just last week, the prior one in Feb was all clear, so for anything at all, everything happened in these 3 months. This one in May shows several spots with low uptake. The one near Thorax was the lowest, my Onc said probably reactive and false positive, not to worry too much.

2) The L paraaortic LN SUV is up to 8 :evil: . No measurement. No enlargement confirmed :?: .

3) L Common iliac LN uptake around low 4 too. No measurement. No enlargement confirmed.

4) The one in liver was inconclusive without any measurable lesion, even on the scan, it only shows a higher density foggy area, not a solid thing. Uptake was at low 4... :?:

5) CEA: Feb>1.1 - Mar>0.9 - Apr>1.0 - May>0.9 (same day as my PET scan). CEA at initial diagnosis in March 2017> 189, so the marker was at one point sensitive... :roll:

Now I'm put on FOLFIRI + Avastin (expensive...I think their patent expires in the US this year) and due for check back in Aug for PET scan. I'm pushing for shrinkage (but with no measurement, not sure what's the shrinkage for...), eventually LN resection.

I'm currently on Vitamin D, Vitamin B complex, Curcumin, Reservatrol, Tagamet (800mg/day), Vitamin C, Milk Thistle, baby aspirin and Probiotic. I certainly would consult my doctor but at a glance, am I missing anything?

Is there any silver lining I can hold on to with all these? :cry: I researched a lot on resecting PALN, looks like it's doable, just need to keep the crappy C at bay with immunochemo or something similar. I'm not residing in N. America at the moment and the colon ca group is not well connected, any good survival story to share as encouragement?

I almost prayed for God to take my life the other night thinking this over... :roll: :roll: :roll: :roll: thanks a lot...
F/38 - Dx 8 Mar 17, CEA 189.5
Stage IV Sig. Colon, Liver mets, T3N0M1a, KRAS NRAS Wild, G2=Mod. differentiated
3/17- 6/17 - 6 rounds of FOLFOX + Erbitux - CEA 2.5
7/17 - 1st Liver resect/Colon/Gall, all clear margin
8/17 - 2nd Liver resec
9-12/17' - completed 13 rounds of FOLFOX - CEA 1.0
1/18 - 6/30 - NED
6/30 - PET SCAN showed a lung nodule that grew from 5mm to 8mm - CEA 1.0
8/30 - VATs
8/30 - 4/30 - NED
5/28 - uptake seen in 1 x PALN, 1x common iliac, cloudy in Liver
FOLFIRI + Avastin

rp1954
Posts: 1521
Joined: Mon Jun 13, 2011 1:13 am

Re: It has come back...in the LNs...

Postby rp1954 » Mon Jun 03, 2019 12:49 pm

lovelife789 wrote:… may I ask what this part actually means?
rp1954 wrote:We had later events that appeared to shift the cancer markers' degree of response amongst CEA, CA199 and AFP, perhaps individual lesions shedding different levels of markers.
Also the other blood chemistry and extra but common labs can contain important hints and useful information if inflammation and chemo damage can be kept under control. I've posted much about our basic bloodwork goals and experience.

It means that we combine the analysis of cancer markers with the other panels to better assess and modify cancer recurrence risks and cancer environment, and ultimately, the immune and chemo treatment components. We addressed my wife's monitoring by a different, milder chemo plan more compatible with stable bloodwork, and broader, more sensitive bloodwork, designed for her, starting as early as possible.

Patients in long term treatment for active cancer often face a drift in their markers and tumor cells, where CEA alone missed or delayed detection later than other combinations of marker(s) and panels, or scans. Often by the time detection occurs by other means (e.g. a scan later or symptoms), the surgery boat or some other treatment option may have sailed.

You wife can stay off chemo for the past year is great!!!

Yes, she's happy about it. Now she just wants to forget about mCRC and treatments, puts off monitoring as frequently and healthy stuff, where that is more a suppressed worry for me.

1) So I got my PET scan report just last week, the prior one in Feb was all clear, so for anything at all, everything happened in these 3 months. This one in May shows several spots with low uptake. The one near Thorax was the lowest, my Onc said probably reactive and false positive, not to worry too much.
2) The L paraaortic LN SUV is up to 8 :evil: . No measurement. No enlargement confirmed :?: .
3) L Common iliac LN uptake around low 4 too. No measurement. No enlargement confirmed.
4) The one in liver was inconclusive without any measurable lesion, even on the scan, it only shows a higher density foggy area, not a solid thing. Uptake was at low 4... :?:

Your doctors are dependent on your scans - PET, CT and MRI(?) for size and character changes to monitor for cancer changes. They typically won't move without one (else you are talking things like biopsy, exploratory surgery, anomalies, or maybe liquid biopsy). You need better diagnostic information to break the dead lock. You seem to be missing CT or MRI size estimates that could be helpful to you. We get that from the original radiology scan reports, which we pick up, rather than be filtered through (or out) by an oncologist first. Often a second opinion adds info or changes the picture.

Perhaps others have insight on bloodwork, CTC or ctDNA to push another diagnostic step here over the diagnostic noise from Folfiri-Avastin.

I'm currently on Vitamin D, Vitamin B complex, Curcumin, Reservatrol, Tagamet (800mg/day), Vitamin C, Milk Thistle, baby aspirin and Probiotic. I certainly would consult my doctor but at a glance, am I missing anything?

Lots of things and details? You should work with some experienced professionals for a personal plan who look at your details. Then discuss them here. "Done right", the supplements and off label drugs should form a targetable/testable network of additive benefits, either at the supportive level, or, to also intensify chemo benefits at more aggressive usages, with different groups of patients linked to different treatment combinations and components.

I don't really agree with Tagamet taken willy nilly for long term treatment with immunochemo or post chemo followup without at least a CA199 determination. We always tracked CA199 in the bloodwork and eventually got the CA199 and CSLEX1 tissue stains done, to be sure of our target. You apparently never overcame or bypassed the oncologist's resistance on a relatively inexpensive initial CA199 test (even just one), where I count that as a mistake - CA199 detects a substantial metastatic factor (with CSLEX1) treatable with CIM but cimetidine has some contraindications for irinotecan, metformin and Avastin. In fact I'm surprised cimetidine didn't make your Folfiri+Av side effects more (too) harsh. That Kras WT probably increases the chance of your CA199 being ultralow, meaning CIM would be useless for you. It's important to try to line up your answers with people's CRC most like yours.
watchful, active researcher and caregiver for stage IVb/c CC. surgeries 4/10 sigmoid etc & 5/11 para-aortic LN cluster; 8 yrs immuno-Chemo for mCRC; now no chemo
most of 2010 Life Extension recommendations and possibilities + more, some (much) higher, peaking ~2011-12, taper to almost nothing mid 2018, mostly IV C

Eternal optimist
Posts: 20
Joined: Sun May 01, 2016 9:26 am

Re: It has come back...in the LNs...

Postby Eternal optimist » Wed Jun 05, 2019 6:33 pm

I had PALN mets when was diagnosed, and 2 PALN recurrences. The first were surgically removed, the second treated with radiotherapy and the third shrunk away within my first 3 months of chemo for life. They stopped showing up on scans 18 months ago, and I have had no evidence of visible disease for over a year and am now on maintenance chemotherapy. PALN mets can be like the advance guard of a recurrence, it's not uncommon for people to get organ mets diagnosed a few months after Para aortic mets are discovered. This is why you should have chemo first before any targeted treatment.

My understanding is that it is quite common for lymph node mets to not affect CEA, even if subsequent organ mets do then cause raised markers. Also your tumour could have mutated to stop expressing CEA, this would also be a sudden change in the readings compared to previous tumours.

The chemo has worked really for me this time, and I know others who have also got rid of PALN mets through chemo. I hope you get the same result.
Diagnosed age 34 in Feb 2015, sigmoid tumour & PALNs
CapOx Mar-Oct 15
Resection of colon and PALNs Dec 15 -T3a N2 M1a
Xeloda Apr- Nov 16
Dec 16 - PALN recurrence, Radiotherapy
Aug 17 - FDG uptake in para aortic and retro peritoneal nodes, peritoneum, ovary plus small nodues on lungs. Only enlarged PALNs and small lung nodules visible on CT, but possible spine mets seen.
Sept 17 Folfiri and Cetuximab
April 18 NED
July 18 -surgery to examine what turned out to be a benign peritoneal inclusion cyst

lovelife789
Posts: 141
Joined: Thu Aug 24, 2017 5:28 am

Re: It has come back...in the LNs...

Postby lovelife789 » Thu Jun 06, 2019 3:55 am

Eternal optimist wrote:I had PALN mets when was diagnosed, and 2 PALN recurrences. The first were surgically removed, the second treated with radiotherapy and the third shrunk away within my first 3 months of chemo for life. They stopped showing up on scans 18 months ago, and I have had no evidence of visible disease for over a year and am now on maintenance chemotherapy. PALN mets can be like the advance guard of a recurrence, it's not uncommon for people to get organ mets diagnosed a few months after Para aortic mets are discovered. This is why you should have chemo first before any targeted treatment.

My understanding is that it is quite common for lymph node mets to not affect CEA, even if subsequent organ mets do then cause raised markers. Also your tumour could have mutated to stop expressing CEA, this would also be a sudden change in the readings compared to previous tumours.

The chemo has worked really for me this time, and I know others who have also got rid of PALN mets through chemo. I hope you get the same result.


Hi Eternal Optimist,

Thanks for sharing your story. You really did give me hope. I mentioned in another thread that the mCRC community is not very connected where I live, so I don't really hear other people's stories. I can only search here and find the positive stories of PALN mets a minority.

I was really depressed upon getting my PET CT report, thinking I'm so going to be leaving my dear mom, who fought with me at different down times through the years. I wept for a few days, lost my appetite and told my loved ones of the news, which felt more like mourning than telling.

These few days, I started to pick up more positive stories. I'm not dreaming for a recurrence free 5 years, of course it would be good if it happens, but I'm wishing for the opportunity to keep fighting.

Can you share which maintenance therapy are you on now and how are you tolerating it? I was told chemo can only do so much for LNs but radiotherapy is very efficient in getting them packing for good. Do you mind to also share the other positive stories you have heard?

One thing I really felt had brought recurrence was stress. I was working happily and kept getting clear scans until the last three months I was always under stress and it came back.

For us all, say no to stress and say yes to longevity ~

Lovelife
F/38 - Dx 8 Mar 17, CEA 189.5
Stage IV Sig. Colon, Liver mets, T3N0M1a, KRAS NRAS Wild, G2=Mod. differentiated
3/17- 6/17 - 6 rounds of FOLFOX + Erbitux - CEA 2.5
7/17 - 1st Liver resect/Colon/Gall, all clear margin
8/17 - 2nd Liver resec
9-12/17' - completed 13 rounds of FOLFOX - CEA 1.0
1/18 - 6/30 - NED
6/30 - PET SCAN showed a lung nodule that grew from 5mm to 8mm - CEA 1.0
8/30 - VATs
8/30 - 4/30 - NED
5/28 - uptake seen in 1 x PALN, 1x common iliac, cloudy in Liver
FOLFIRI + Avastin

lovelife789
Posts: 141
Joined: Thu Aug 24, 2017 5:28 am

Re: It has come back...in the LNs...

Postby lovelife789 » Thu Jun 06, 2019 4:15 am

Thanks RP for the explanation, I read your reply a few times to make sure I understand everything. :oops:

I don't take Tagamet anymore, dropped like it's wildfire....

Really appreciate all the knowledge and idea!!!
F/38 - Dx 8 Mar 17, CEA 189.5
Stage IV Sig. Colon, Liver mets, T3N0M1a, KRAS NRAS Wild, G2=Mod. differentiated
3/17- 6/17 - 6 rounds of FOLFOX + Erbitux - CEA 2.5
7/17 - 1st Liver resect/Colon/Gall, all clear margin
8/17 - 2nd Liver resec
9-12/17' - completed 13 rounds of FOLFOX - CEA 1.0
1/18 - 6/30 - NED
6/30 - PET SCAN showed a lung nodule that grew from 5mm to 8mm - CEA 1.0
8/30 - VATs
8/30 - 4/30 - NED
5/28 - uptake seen in 1 x PALN, 1x common iliac, cloudy in Liver
FOLFIRI + Avastin

DarknessEmbraced
Posts: 3348
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: It has come back...in the LNs...

Postby DarknessEmbraced » Sat Jun 08, 2019 11:41 am

I'm sorry it wasn't better news and I hope your chemo goes well!*hugs*
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


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