Possibly still NED...our story to date

Please feel free to read, share your thoughts, your stories and connect with others!
mpbser
Posts: 934
Joined: Wed Apr 19, 2017 11:52 am

Re: Possibly still NED...our story to date

Postby mpbser » Tue Feb 12, 2019 4:03 pm

I had some down time yesterday afternoon so I spent it looking at the images from the MGH December MRI. I measured the segment 6 spot and it looked .9 cm to me when you use the auto magnification. If you increase the magnification one notch up, it adjusts to 1.3 or so. The radiologist at MGH could have had it set at the lower magnification or the radiologist at MSK could have had it set at the next notch up!

I guess I won't ever get to the bottom of it, not being present for the reads and there being no record of what magnification setting the reads were made on. Oh well!
Wife 4/17 Dx age 45
5/17 LAR
Adenocarcinoma
low grade
1st primary T3 N2b M1a
Stage IVA
8/17 Sub-total colectomy
2nd primary 5.5 cm T1 N0
9 of 96 nodes
CEA: < 2.9
MSS
Lynch no; KRAS wild
Immunohistochemsistry Normal
Fall 2017 FOLFOX shrank the 1 met in liver
1/18 Liver left hepatectomy seg 4
5/18 CT clear
12/18 MRI 1 liver met
3/7/19 Resection & HAI
4/1/19 Folfiri & FUDR
5/13/19 HAI pump catheter dislodge, nearly bled to death
6-7 '19 5FU 4 cycles
NED

User avatar
LPL
Posts: 651
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

Re: Possibly still NED...our story to date

Postby LPL » Tue Feb 12, 2019 5:52 pm

mpbser wrote:I had some down time yesterday afternoon so I spent it looking at the images from the MGH December MRI. I measured the segment 6 spot and it looked .9 cm to me when you use the auto magnification. If you increase the magnification one notch up, it adjusts to 1.3 or so. The radiologist at MGH could have had it set at the lower magnification or the radiologist at MSK could have had it set at the next notch up!

I guess I won't ever get to the bottom of it, not being present for the reads and there being no record of what magnification setting the reads were made on. Oh well!

I wish the same person looked at all my DH’s scans.
As I understand it different peope looking, is also a source of difference in measurement.
DH @ 65 DX 4/11/16 CC recto-sigmoid junction
Adenocarcenoma 35x15x9mm G3(biopsi) G1(surgical)
Mets 3 Liver resectable
T4aN1bM1a IVa 2/9 LN
MSS, KRAS-mut G13D
CEA & CA19-9: 5/18 2.5 78 8/17 1.4 48 2/14/17 1.8 29
4 Folfox 6/15-7/30 (b4 liver surgery) 8 after
CT: 8/8 no change 3/27/17 NED->Jan-19 mets to lung NED again Oct-19 :)
:!: Steroid induced hyperglycemia dx after 3chemo
Surgeries 2016: 3/18 Emergency colostomy
5/23 Primary+gallbl+stoma reversal+port 9/1 Liver mets
RFA 2019: Feb & Oct lung mets

mpbser
Posts: 934
Joined: Wed Apr 19, 2017 11:52 am

Re: Possibly still NED...our story to date

Postby mpbser » Tue Feb 12, 2019 6:01 pm

Exactly!
Wife 4/17 Dx age 45
5/17 LAR
Adenocarcinoma
low grade
1st primary T3 N2b M1a
Stage IVA
8/17 Sub-total colectomy
2nd primary 5.5 cm T1 N0
9 of 96 nodes
CEA: < 2.9
MSS
Lynch no; KRAS wild
Immunohistochemsistry Normal
Fall 2017 FOLFOX shrank the 1 met in liver
1/18 Liver left hepatectomy seg 4
5/18 CT clear
12/18 MRI 1 liver met
3/7/19 Resection & HAI
4/1/19 Folfiri & FUDR
5/13/19 HAI pump catheter dislodge, nearly bled to death
6-7 '19 5FU 4 cycles
NED

mpbser
Posts: 934
Joined: Wed Apr 19, 2017 11:52 am

Re: Possibly still NED...our story to date

Postby mpbser » Tue Feb 26, 2019 7:25 am

So, yesterday was the big pre-surgery day with CT, MRI, labs, echo, EKG, and appointments with Kemeny and D’Angelica. The appointment with D’Angelica went well. He had had a chance to look at the MRI which showed the lone new met to be “unchanged” according to him. He said that if he thinks that it looks possibly benign when he is in there, he will do a rapid biopsy before moving forward because obviously we don’t want a pump in that case. At this point, my husband is now not even sure if he wants it in any case. A couple reasons for this. First, the MRI actually notes that the suspicious spot actually decreased in size by 2mm. 1.3 cm to 1.1 cm. I added some super powerful supplements to his regime a few weeks ago. Very glad they work but now their efficacy is impeding on what were firm plans to get the pump. Almost as importantly (to my husband), Dr. Kemeny showed her true colors to us last night. She was extraordinarily abrasive. I am a very clinical thinker and put my feelings aside when it comes to these matters, but he can’t so much. We have until the day before the surgery to decide. The upcoming week sure will be one of very deep contemplation.
Last edited by mpbser on Tue Feb 26, 2019 11:23 am, edited 1 time in total.
Wife 4/17 Dx age 45
5/17 LAR
Adenocarcinoma
low grade
1st primary T3 N2b M1a
Stage IVA
8/17 Sub-total colectomy
2nd primary 5.5 cm T1 N0
9 of 96 nodes
CEA: < 2.9
MSS
Lynch no; KRAS wild
Immunohistochemsistry Normal
Fall 2017 FOLFOX shrank the 1 met in liver
1/18 Liver left hepatectomy seg 4
5/18 CT clear
12/18 MRI 1 liver met
3/7/19 Resection & HAI
4/1/19 Folfiri & FUDR
5/13/19 HAI pump catheter dislodge, nearly bled to death
6-7 '19 5FU 4 cycles
NED

mpbser
Posts: 934
Joined: Wed Apr 19, 2017 11:52 am

Re: Possibly still NED...our story to date

Postby mpbser » Tue Feb 26, 2019 7:26 am

So, yesterday was the big pre-surgery day with CT, MRI, labs, echo, EKG, and appointments with Kemeny and D’Angelica. The appointment with D’Angelica went well. He had had a chance to look at the MRI which showed the lone new met to be “unchanged” according to him. He said that if he thinks that it looks possibly benign when he is in there, he will do a rapid biopsy before moving forward because obviously we don’t want a pump in that case. At this point, my husband is now not even sure if he wants it in any case. A couple reasons for this. First, the MRI actually notes that the suspicious spot actually decreased in size by 2mm. 1.3 cm to 1.1 cm. I added some super powerful supplements to his regime a few weeks ago. Very glad they work but now their efficacy is impeding on what were firm plans to get the pump. Almost as importantly (to my husband), Dr. Kemeny showed her true colors to us last night. She was extraordinarily abrasive, confrontational, and argumentative. My husband now firmly despises her. I am a very clinical thinker and put my feelings aside when it comes to these matters, but he can’t so much. We have until the day before the surgery to decide. The upcoming week sure will be one of very deep contemplation.
Wife 4/17 Dx age 45
5/17 LAR
Adenocarcinoma
low grade
1st primary T3 N2b M1a
Stage IVA
8/17 Sub-total colectomy
2nd primary 5.5 cm T1 N0
9 of 96 nodes
CEA: < 2.9
MSS
Lynch no; KRAS wild
Immunohistochemsistry Normal
Fall 2017 FOLFOX shrank the 1 met in liver
1/18 Liver left hepatectomy seg 4
5/18 CT clear
12/18 MRI 1 liver met
3/7/19 Resection & HAI
4/1/19 Folfiri & FUDR
5/13/19 HAI pump catheter dislodge, nearly bled to death
6-7 '19 5FU 4 cycles
NED

User avatar
Maggie Nell
Posts: 1134
Joined: Wed May 27, 2015 1:57 am
Location: Melbourne, Australia

Re: Possibly still NED...our story to date

Postby Maggie Nell » Tue Feb 26, 2019 10:28 am

Do you and your husband still use the same username when you post in this forum?
DX April 2015, @ 54
35mm poorly diff. tumour, incidental finding following emergency r. hemicolectomy
for ileo-colic intussusception.
Lymph nodes: 0/22
T3 N0 MX
July 2019 : pending liver U/S, colonoscopy
rut roh

radnyc
Posts: 408
Joined: Tue Apr 06, 2010 6:32 pm

Re: Possibly still NED...our story to date

Postby radnyc » Tue Feb 26, 2019 10:59 am

My two cents. Go with what Kemeny says. She is who she is, we’ve known that for years on here. My oncologist does not hold my hand, at first I hated him. After I saw the results I respect and understand where’s he’s coming from. Your husband is getting the best possible treatment at MSK, no doubt. Back off the supplements, I did. After surgery I started back up slowly.
DX Jan '10, at 47
Feb - colon resection - 2/17 nodes
April - liver mets - Stage 4
3 months Folfox chemotherapy
August '10 liver resection and HAI pump
7 months chemo FUDR HAI and Folfiri systemic
NED since August 2010
Last treatment April '11
HAI Pump removed Dec '15

mpbser
Posts: 934
Joined: Wed Apr 19, 2017 11:52 am

Re: Possibly still NED...our story to date

Postby mpbser » Tue Feb 26, 2019 11:25 am

“Go with what Kemeny says.” She hasn’t particularly said anything. That’s the thing.
Wife 4/17 Dx age 45
5/17 LAR
Adenocarcinoma
low grade
1st primary T3 N2b M1a
Stage IVA
8/17 Sub-total colectomy
2nd primary 5.5 cm T1 N0
9 of 96 nodes
CEA: < 2.9
MSS
Lynch no; KRAS wild
Immunohistochemsistry Normal
Fall 2017 FOLFOX shrank the 1 met in liver
1/18 Liver left hepatectomy seg 4
5/18 CT clear
12/18 MRI 1 liver met
3/7/19 Resection & HAI
4/1/19 Folfiri & FUDR
5/13/19 HAI pump catheter dislodge, nearly bled to death
6-7 '19 5FU 4 cycles
NED

User avatar
LPL
Posts: 651
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

Re: Possibly still NED...our story to date

Postby LPL » Tue Feb 26, 2019 12:13 pm

mpbser wrote:So, yesterday was the big pre-surgery day with CT, MRI, labs, echo, EKG, and appointments with Kemeny and D’Angelica. The appointment with D’Angelica went well. He had had a chance to look at the MRI which showed the lone new met to be “unchanged” according to him. He said that if he thinks that it looks possibly benign when he is in there, he will do a rapid biopsy before moving forward because obviously we don’t want a pump in that case. At this point, my husband is now not even sure if he wants it in any case. A couple reasons for this. First, the MRI actually notes that the suspicious spot actually decreased in size by 2mm. 1.3 cm to 1.1 cm. I added some super powerful supplements to his regime a few weeks ago. Very glad they work but now their efficacy is impeding on what were firm plans to get the pump. Almost as importantly (to my husband), Dr. Kemeny showed her true colors to us last night. She was extraordinarily abrasive, confrontational, and argumentative. My husband now firmly despises her. I am a very clinical thinker and put my feelings aside when it comes to these matters, but he can’t so much. We have until the day before the surgery to decide. The upcoming week sure will be one of very deep contemplation.

Nice to hear you had a good appointment with the surgeon.
It feels odd reading about different peoples experiences with the famous Dr Kemeny.. We want our Onc to be very scilled but we also want to feel calm & reassured that we can ask questions and get answers. Someone wrote to follow up with her assistent (or what it is called) after the appointment with her. Is that possible for you? Sending strength and a hug.
DH @ 65 DX 4/11/16 CC recto-sigmoid junction
Adenocarcenoma 35x15x9mm G3(biopsi) G1(surgical)
Mets 3 Liver resectable
T4aN1bM1a IVa 2/9 LN
MSS, KRAS-mut G13D
CEA & CA19-9: 5/18 2.5 78 8/17 1.4 48 2/14/17 1.8 29
4 Folfox 6/15-7/30 (b4 liver surgery) 8 after
CT: 8/8 no change 3/27/17 NED->Jan-19 mets to lung NED again Oct-19 :)
:!: Steroid induced hyperglycemia dx after 3chemo
Surgeries 2016: 3/18 Emergency colostomy
5/23 Primary+gallbl+stoma reversal+port 9/1 Liver mets
RFA 2019: Feb & Oct lung mets

radnyc
Posts: 408
Joined: Tue Apr 06, 2010 6:32 pm

Re: Possibly still NED...our story to date

Postby radnyc » Tue Feb 26, 2019 3:04 pm

Curious, what “super powerful supplements” did you use that you think might have shrank the tumor?
DX Jan '10, at 47
Feb - colon resection - 2/17 nodes
April - liver mets - Stage 4
3 months Folfox chemotherapy
August '10 liver resection and HAI pump
7 months chemo FUDR HAI and Folfiri systemic
NED since August 2010
Last treatment April '11
HAI Pump removed Dec '15

mpbser
Posts: 934
Joined: Wed Apr 19, 2017 11:52 am

Re: Possibly still NED...our story to date

Postby mpbser » Tue Feb 26, 2019 3:38 pm

Thanks, LPL. I appreciate that.

radnyc, I added chlorrella, spirulina, chlorophyllin, n-acecytel-carnitine (sp?), dandelion root extract, selenium, resveratrol, and quercetin to his already long list that I upped to full dosage. I also started buying a higher quality curcumin extract that has high rate of bioavailability.
Wife 4/17 Dx age 45
5/17 LAR
Adenocarcinoma
low grade
1st primary T3 N2b M1a
Stage IVA
8/17 Sub-total colectomy
2nd primary 5.5 cm T1 N0
9 of 96 nodes
CEA: < 2.9
MSS
Lynch no; KRAS wild
Immunohistochemsistry Normal
Fall 2017 FOLFOX shrank the 1 met in liver
1/18 Liver left hepatectomy seg 4
5/18 CT clear
12/18 MRI 1 liver met
3/7/19 Resection & HAI
4/1/19 Folfiri & FUDR
5/13/19 HAI pump catheter dislodge, nearly bled to death
6-7 '19 5FU 4 cycles
NED

radnyc
Posts: 408
Joined: Tue Apr 06, 2010 6:32 pm

Re: Possibly still NED...our story to date

Postby radnyc » Tue Feb 26, 2019 3:51 pm

mpbser wrote:Thanks, LPL. I appreciate that.

radnyc, I added chlorrella, spirulina, chlorophyllin, n-acecytel-carnitine (sp?), dandelion root extract, selenium, resveratrol, and quercetin to his already long list that I upped to full dosage. I also started buying a higher quality curcumin extract that has high rate of bioavailability.

Thanks for the information. I’ve used some of them, as a preventative measure. I really believe they’re helpful. I’ll look them up. The doctors don’t like us to be using a lot of supplements prior to surgery or the start of a new chemo regime. They feel it’ll mess with their readings. Which does happen. On the other hand I totally get why you’re doing this. Your husband is lucky to have you looking for all this alternatives. Hopefully things will work out and he’ll get the pump and be on his way to NED.
DX Jan '10, at 47
Feb - colon resection - 2/17 nodes
April - liver mets - Stage 4
3 months Folfox chemotherapy
August '10 liver resection and HAI pump
7 months chemo FUDR HAI and Folfiri systemic
NED since August 2010
Last treatment April '11
HAI Pump removed Dec '15

mpbser
Posts: 934
Joined: Wed Apr 19, 2017 11:52 am

Re: Possibly still NED...our story to date

Postby mpbser » Tue Feb 26, 2019 4:01 pm

I've been making sure that his supplements are listed with all his doctors. Interestingly, no one has ever said anything except to say to stop them a week before surgery.
Wife 4/17 Dx age 45
5/17 LAR
Adenocarcinoma
low grade
1st primary T3 N2b M1a
Stage IVA
8/17 Sub-total colectomy
2nd primary 5.5 cm T1 N0
9 of 96 nodes
CEA: < 2.9
MSS
Lynch no; KRAS wild
Immunohistochemsistry Normal
Fall 2017 FOLFOX shrank the 1 met in liver
1/18 Liver left hepatectomy seg 4
5/18 CT clear
12/18 MRI 1 liver met
3/7/19 Resection & HAI
4/1/19 Folfiri & FUDR
5/13/19 HAI pump catheter dislodge, nearly bled to death
6-7 '19 5FU 4 cycles
NED

radnyc
Posts: 408
Joined: Tue Apr 06, 2010 6:32 pm

Re: Possibly still NED...our story to date

Postby radnyc » Tue Feb 26, 2019 4:27 pm

Have you checked out MSK herbs and supplements site? You just pop in the name and it tells you what their take on it is.

https://www.mskcc.org/cancer-care/diagn ... rbs/search
DX Jan '10, at 47
Feb - colon resection - 2/17 nodes
April - liver mets - Stage 4
3 months Folfox chemotherapy
August '10 liver resection and HAI pump
7 months chemo FUDR HAI and Folfiri systemic
NED since August 2010
Last treatment April '11
HAI Pump removed Dec '15

mpbser
Posts: 934
Joined: Wed Apr 19, 2017 11:52 am

Re: Possibly still NED...our story to date

Postby mpbser » Tue Feb 26, 2019 4:32 pm

Yes, I have checked that site to see what it says about every one that he takes.
Wife 4/17 Dx age 45
5/17 LAR
Adenocarcinoma
low grade
1st primary T3 N2b M1a
Stage IVA
8/17 Sub-total colectomy
2nd primary 5.5 cm T1 N0
9 of 96 nodes
CEA: < 2.9
MSS
Lynch no; KRAS wild
Immunohistochemsistry Normal
Fall 2017 FOLFOX shrank the 1 met in liver
1/18 Liver left hepatectomy seg 4
5/18 CT clear
12/18 MRI 1 liver met
3/7/19 Resection & HAI
4/1/19 Folfiri & FUDR
5/13/19 HAI pump catheter dislodge, nearly bled to death
6-7 '19 5FU 4 cycles
NED


Return to “Colon Talk - Colon cancer (colorectal cancer) support forum”



Who is online

Users browsing this forum: Carboxo, Google [Bot], Majestic-12 [Bot] and 44 guests