Possibly still NED...our story to date

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ginabeewell
Posts: 206
Joined: Wed Oct 24, 2018 10:30 am

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

Postby ginabeewell » Fri Apr 12, 2019 8:24 am

That’s great news. Dealing with this is tough enough without having to make trips every other week. I sure hope it works out for you!
45 year old mom of twins (7) and lucky stepmom of 13 and 16 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets (largest 11 cm)
9/20/18 CEA 931
10/1/18 FOLFOX + Vectibix planned 12 rounds
12/12/18 Routine scan showed typhlitis (7 days in hospital) but largest met down to 5 cm. Chemo holiday.
12/26/18 CEA 4.6
1/14/18 Resume chemo (#6-8)
3/27/19 Surgery: HAI pump placement / colon resection
4/8/19 Resume chemo (#9-12) FOLFOX (no OX) + Vectibix
5/20/19 CEA 1.3
Late summer: liver resection hopefully

boxhill
Posts: 236
Joined: Fri Apr 06, 2018 11:40 am

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

Postby boxhill » Fri Apr 12, 2019 10:28 am

To your original question about disconnecting and flushing the 5FU pump, for FOLFOX typically the pump is on for 46 hours, not 48. The total infusion time is indeed 48, but the first two hours are the Oxy and Leucovrin infusion at the center, followed by the 5FU bolus. When I was on FOLFOX they always told me to come back 48 hours after the infusion began. Usually the pump would run out on the way there (it's about 25 minutes away). It is my understanding that it is not wise to wait long before removing the pump, IIRC less than an hour was mentioned.

While some people disconnect and flush on their own, I was close enough to the center that going in made more sense. It also enabled them to take a look at me, give a bag of fluids if necessary, and so on.

The HAI pump is outside my experience. :)
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemicolectomy
11 of 25 nodes,5 of 5 mesentery nodes
5mm liver met removed
pT3 pN2b pM1
BRAF wild, KRAS G12D
dMMR, MSI-H
5/4/18 FOLFOX
Neulasta 6/28
7/9/18 CT NED, 2mm indeterminate lung nodule
11/20/18 CT NED, Lung nodule calcified granuloma. Enlarged spleen.
12/20/18 Liver MRI 5mm liver met and 2 lymph nodes in porta hepatis, CT review shows progression on FOLFOX
12/31/18 Keytruda
6/5/19 Triphasic CT LNs shrunk to normal, Liver node stable

mpbser
Posts: 904
Joined: Wed Apr 19, 2017 11:52 am

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

Postby mpbser » Fri Apr 12, 2019 3:56 pm

I plan on calling the local cancer center on Monday to make an appointment for my husband to discuss the possibility. It sure would be nice to reduce the number of trips to NYC.

My husband's disconnect appointment is scheduled for 48 hours after his treatment appointment (10:30 appointment for treatment at MSK Monday and 10:30 appointment for disconnect at our local cancer center on Wednesday). Hope this works out ok. I will chime back in on my thread next week -- in case this might help anyone else in the future.
Wife 4/17 Dx age 45
5/17 LAR
Adenocarcinoma
5 x 4 x 1 cm
low grade
T3 N2b M1a
Stage IV A
8/17 Sub-total colectomy
2nd tumor 5.5 cm T1 N0
lymph nodes: 9 of 96
CEA: 2.9 to 2.2
MSS/MSI-L
Lynch no; KRAS wild
Immunohistochemsistry Normal
Tumor: MTOR, APC, TP53
Fall 2017 FOLFOX shrank the 1 met in liver
1/18 Liver left hepatectomy seg 4
5/18 CT clear
12/18 MRI shows 1 liver met
3/7/19 Resection & HAI
4/1/19 Folfiri & FUDR
5/13/19 HAI pump catheter dislodge, nearly hemorrhaged to death
6/10/19 5FU

mpbser
Posts: 904
Joined: Wed Apr 19, 2017 11:52 am

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

Postby mpbser » Wed Apr 17, 2019 7:15 pm

My husband’s 5-fu pump was just about empty at 9:30 am this morning, just in time for his 10:30 disconnect appointment at our little cancer center in town. So far, he has had practically no side effects from the folfiri. He takes 1 gram of ginger daily which I started giving him a few days before his Iri infusion on Monday. The Life Extension protocol says to use it for the three days before treatment but, if I recall correctly, is silent about during and afterwards. Since 5-fu with LV stays in the body for 2-3 days after the infusion has finished, he’ll keep doing the ginger tomorrow and Friday. Basically, the only side effect he has had is fatigue and that only came upon him tonight. So far, so good.

Also, his labs on Monday were phenomenal.
Wife 4/17 Dx age 45
5/17 LAR
Adenocarcinoma
5 x 4 x 1 cm
low grade
T3 N2b M1a
Stage IV A
8/17 Sub-total colectomy
2nd tumor 5.5 cm T1 N0
lymph nodes: 9 of 96
CEA: 2.9 to 2.2
MSS/MSI-L
Lynch no; KRAS wild
Immunohistochemsistry Normal
Tumor: MTOR, APC, TP53
Fall 2017 FOLFOX shrank the 1 met in liver
1/18 Liver left hepatectomy seg 4
5/18 CT clear
12/18 MRI shows 1 liver met
3/7/19 Resection & HAI
4/1/19 Folfiri & FUDR
5/13/19 HAI pump catheter dislodge, nearly hemorrhaged to death
6/10/19 5FU

zephyr
Posts: 222
Joined: Thu Aug 18, 2016 7:31 am

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

Postby zephyr » Wed Apr 17, 2019 7:54 pm

mpbser wrote:My husband’s 5-fu pump was just about empty at 9:30 am this morning, just in time for his 10:30 disconnect appointment at our little cancer center in town. So far, he has had practically no side effects from the folfiri. He takes 1 gram of ginger daily which I started giving him a few days before his Iri infusion on Monday. The Life Extension protocol says to use it for the three days before treatment but, if I recall correctly, is silent about during and afterwards. Since 5-fu with LV stays in the body for 2-3 days after the infusion has finished, he’ll keep doing the ginger tomorrow and Friday. Basically, the only side effect he has had is fatigue and that only came upon him tonight. So far, so good.

Also, his labs on Monday were phenomenal.


That is AWESOME! My experience with Folfiri was tough but I was in pretty bad shape when I started. I'm so happy your husband's experience has been so good. It's encouraging since I may be doing Folfiri again soon. You can be sure I will remember ginger. Are you giving him fresh ginger or a tincture?
Nov-2009 Early stage CRC found during routine colonoscopy
2010, 2011, 2014 Follow up colonoscopies, all clear
Jun-2016 CRC found during routine follow up colonoscopy, surgery, Stage 4, KRAS, MSS, inoperable lung mets
Aug-2016-May-2018 Folfox, 5FU & Avastin, 5FU, Folfiri & Cyramza
Aug/Sep-2018 YAG laser surgeries (Germany) on both lungs, 11 nodules (9 mets) removed
Nov-2018 clean CT scan
Mar-2019 New lung nodules
April-2019 Xeloda + Avastin

mpbser
Posts: 904
Joined: Wed Apr 19, 2017 11:52 am

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

Postby mpbser » Thu Apr 18, 2019 2:35 am

500 mg Capsules. Yarrow brand, supplied by vitacost :)
Wife 4/17 Dx age 45
5/17 LAR
Adenocarcinoma
5 x 4 x 1 cm
low grade
T3 N2b M1a
Stage IV A
8/17 Sub-total colectomy
2nd tumor 5.5 cm T1 N0
lymph nodes: 9 of 96
CEA: 2.9 to 2.2
MSS/MSI-L
Lynch no; KRAS wild
Immunohistochemsistry Normal
Tumor: MTOR, APC, TP53
Fall 2017 FOLFOX shrank the 1 met in liver
1/18 Liver left hepatectomy seg 4
5/18 CT clear
12/18 MRI shows 1 liver met
3/7/19 Resection & HAI
4/1/19 Folfiri & FUDR
5/13/19 HAI pump catheter dislodge, nearly hemorrhaged to death
6/10/19 5FU

boxhill
Posts: 236
Joined: Fri Apr 06, 2018 11:40 am

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

Postby boxhill » Fri Apr 19, 2019 9:36 am

Good news!
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemicolectomy
11 of 25 nodes,5 of 5 mesentery nodes
5mm liver met removed
pT3 pN2b pM1
BRAF wild, KRAS G12D
dMMR, MSI-H
5/4/18 FOLFOX
Neulasta 6/28
7/9/18 CT NED, 2mm indeterminate lung nodule
11/20/18 CT NED, Lung nodule calcified granuloma. Enlarged spleen.
12/20/18 Liver MRI 5mm liver met and 2 lymph nodes in porta hepatis, CT review shows progression on FOLFOX
12/31/18 Keytruda
6/5/19 Triphasic CT LNs shrunk to normal, Liver node stable

mpbser
Posts: 904
Joined: Wed Apr 19, 2017 11:52 am

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

Postby mpbser » Fri Apr 19, 2019 12:44 pm

and the good news continues.... the fatigue is gone. Essentially, he has experienced minimal side effects this round. The ginger has worked wonders. Thank goodness for http://lifeextension.com/
Wife 4/17 Dx age 45
5/17 LAR
Adenocarcinoma
5 x 4 x 1 cm
low grade
T3 N2b M1a
Stage IV A
8/17 Sub-total colectomy
2nd tumor 5.5 cm T1 N0
lymph nodes: 9 of 96
CEA: 2.9 to 2.2
MSS/MSI-L
Lynch no; KRAS wild
Immunohistochemsistry Normal
Tumor: MTOR, APC, TP53
Fall 2017 FOLFOX shrank the 1 met in liver
1/18 Liver left hepatectomy seg 4
5/18 CT clear
12/18 MRI shows 1 liver met
3/7/19 Resection & HAI
4/1/19 Folfiri & FUDR
5/13/19 HAI pump catheter dislodge, nearly hemorrhaged to death
6/10/19 5FU

User avatar
ginabeewell
Posts: 206
Joined: Wed Oct 24, 2018 10:30 am

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

Postby ginabeewell » Fri Apr 19, 2019 1:05 pm

Is your husband just on FOLFIRI or does he have Vectibix or Avastin as part of his mix?

Dr K just prescribed 5FUDR and Vectibix for me - no Oxy and no Iri this round of systemic. I had asked her to consider keeping me on FOLFOX so I am just curious what drove the recommendation. Maybe my local onc can give me some insight during our appointment on Monday!
45 year old mom of twins (7) and lucky stepmom of 13 and 16 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets (largest 11 cm)
9/20/18 CEA 931
10/1/18 FOLFOX + Vectibix planned 12 rounds
12/12/18 Routine scan showed typhlitis (7 days in hospital) but largest met down to 5 cm. Chemo holiday.
12/26/18 CEA 4.6
1/14/18 Resume chemo (#6-8)
3/27/19 Surgery: HAI pump placement / colon resection
4/8/19 Resume chemo (#9-12) FOLFOX (no OX) + Vectibix
5/20/19 CEA 1.3
Late summer: liver resection hopefully

mpbser
Posts: 904
Joined: Wed Apr 19, 2017 11:52 am

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

Postby mpbser » Fri Apr 19, 2019 1:47 pm

He is only on folfiri. That's really interesting change per Dr. K. I would be very interested in knowing her reasoning.
Wife 4/17 Dx age 45
5/17 LAR
Adenocarcinoma
5 x 4 x 1 cm
low grade
T3 N2b M1a
Stage IV A
8/17 Sub-total colectomy
2nd tumor 5.5 cm T1 N0
lymph nodes: 9 of 96
CEA: 2.9 to 2.2
MSS/MSI-L
Lynch no; KRAS wild
Immunohistochemsistry Normal
Tumor: MTOR, APC, TP53
Fall 2017 FOLFOX shrank the 1 met in liver
1/18 Liver left hepatectomy seg 4
5/18 CT clear
12/18 MRI shows 1 liver met
3/7/19 Resection & HAI
4/1/19 Folfiri & FUDR
5/13/19 HAI pump catheter dislodge, nearly hemorrhaged to death
6/10/19 5FU

User avatar
ginabeewell
Posts: 206
Joined: Wed Oct 24, 2018 10:30 am

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

Postby ginabeewell » Fri Apr 19, 2019 2:33 pm

mpbser wrote:He is only on folfiri. That's really interesting change per Dr. K. I would be very interested in knowing her reasoning.


My best guess is that it is tied to the fact that I had a pretty serious infection back in December.

At the time, my local oncologist was worried that FOLFOX + Vectibix might have just been too much for me. When I returned to chemo after healing from that infection, I did my first round sans Vectibix (which Dr K thought made no sense, by the way). So maybe Dr K is pulling the Oxy out this time instead? I've seen a few people mention that the new protocol for FOLFOX is six rounds, due to the long-term impact of the Oxy. I've done 8, albeit with a 7 week chemo break in between cycle 5 and 6.

Personally the Vectibix side effects bother me a lot more than the Oxy does. That one round I had just FOLFOX was a breeze. But it seems like the doctors are convinced it's really working and so don't want to take it out of the mix. Can't wait for my rash to return in full force, ugh.

I'm sure I'll find out more on Monday.
45 year old mom of twins (7) and lucky stepmom of 13 and 16 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets (largest 11 cm)
9/20/18 CEA 931
10/1/18 FOLFOX + Vectibix planned 12 rounds
12/12/18 Routine scan showed typhlitis (7 days in hospital) but largest met down to 5 cm. Chemo holiday.
12/26/18 CEA 4.6
1/14/18 Resume chemo (#6-8)
3/27/19 Surgery: HAI pump placement / colon resection
4/8/19 Resume chemo (#9-12) FOLFOX (no OX) + Vectibix
5/20/19 CEA 1.3
Late summer: liver resection hopefully

mpbser
Posts: 904
Joined: Wed Apr 19, 2017 11:52 am

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

Postby mpbser » Sun May 05, 2019 7:35 am

I found myself going down the rabbit hole again... one thing I read brought me to another, then to another and another, and so on....

So, I was reading about how sTNF-R1 (a type of tumor necrosis factor) was found elevated in the greatest percentage of all CRC patients and immunity, etc., in https://www.int-imm-foundation.com/en/p ... s.htm#fn19 and I got curious about what the difference is between innate immunity and "cellular" immunity which I found out was aka "cell-mediated" immunity... which led me to this:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3938011/ Immune response after laparoscopic colectomy for cancer: a review

and the following caught my attention: "In particular, the level of circulating tumor cells is highest following manipulation of the tumor" (a concept I have seen expressed on this forum a number of times).

I am now convinced that it was a BAD idea for my husband not to have done mop-up chemo after his liver surgery in January 2018. Oh well, nothing can be done about it. Moving on.....
Wife 4/17 Dx age 45
5/17 LAR
Adenocarcinoma
5 x 4 x 1 cm
low grade
T3 N2b M1a
Stage IV A
8/17 Sub-total colectomy
2nd tumor 5.5 cm T1 N0
lymph nodes: 9 of 96
CEA: 2.9 to 2.2
MSS/MSI-L
Lynch no; KRAS wild
Immunohistochemsistry Normal
Tumor: MTOR, APC, TP53
Fall 2017 FOLFOX shrank the 1 met in liver
1/18 Liver left hepatectomy seg 4
5/18 CT clear
12/18 MRI shows 1 liver met
3/7/19 Resection & HAI
4/1/19 Folfiri & FUDR
5/13/19 HAI pump catheter dislodge, nearly hemorrhaged to death
6/10/19 5FU

Punky44
Posts: 293
Joined: Mon Oct 01, 2018 4:29 pm

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

Postby Punky44 » Sun May 05, 2019 4:39 pm

I wonder about that concept too but then I also think how virtually all Stage 1s are never advised chemo but their tumors are “disturbed” upon removal just like everyone else’s.

I dwell on this a lot especially bc the doctors had my mom do all her chemo upfront before surgery.
Caregiver to my amazing mom (68)
10/1/18 DX with rectal cancer; CEA 17 at diagnosis
MRI/CT/PET puts staging at T3N2M0
Total neoadjuvant therapy:
8 rounds Folfox 11/5/18 - 2/11/19
Short course radiation 3/14/19 - 3/20/19
Robotically assisted laparoscopic LAR 3/21/19
Pathology report says yT2N0M0 with 0/38 nodes
CEA 4/23: 2.1

Me: 34, first colonoscopy 11/16/18—normal! Come back in 5 years.

User avatar
henry123
Posts: 186
Joined: Sun Oct 08, 2017 3:25 am

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

Postby henry123 » Tue May 07, 2019 5:28 pm

mpbser wrote:Thanks for asking, punky. He's still a bit shocked, as am I. The PET results seemed to be so promising. What a let down.


This disease is such.
Take things in your stride.
Best wishes.
46yo M msi-high Lynch +ve
5/16 lap AR 14/21 L nodes +ve
T4N2M1
7/16 Capox 9 cyc
9/16 cea 2
1/17 550
PET CT mets in lung & peri
iri+ avast fail
3/17 10577
4/17 regro fail
5/17 cea 28800
5/17 CT inc in size of mes nodes ,onset of multi nodules in liver.
6/17 Opdivo start
7/17 26754
8/17 5623
9/17 497
10/17 52
11/17 12
CT all clear exc a nodule in Lung. liver norm
1/18 3.6
4/18 2.0
Aspirin start
6/18 1.5 CT clear
12/18 1.1 CT Clear NED
4/19 1.1
6/19 .9 CT clear
Vegan yoga juicing
Still on opdivo

mpbser
Posts: 904
Joined: Wed Apr 19, 2017 11:52 am

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

Postby mpbser » Fri May 10, 2019 4:26 pm

Really trying very hard to take things in stride.

My husband's boss is acting up.

Says that he wants my husband to be at work every day he isn't doing chemo. Well, he HAS been! Seriously. WTF?!?! I don't even have the words to describe how much I despise that man.
Wife 4/17 Dx age 45
5/17 LAR
Adenocarcinoma
5 x 4 x 1 cm
low grade
T3 N2b M1a
Stage IV A
8/17 Sub-total colectomy
2nd tumor 5.5 cm T1 N0
lymph nodes: 9 of 96
CEA: 2.9 to 2.2
MSS/MSI-L
Lynch no; KRAS wild
Immunohistochemsistry Normal
Tumor: MTOR, APC, TP53
Fall 2017 FOLFOX shrank the 1 met in liver
1/18 Liver left hepatectomy seg 4
5/18 CT clear
12/18 MRI shows 1 liver met
3/7/19 Resection & HAI
4/1/19 Folfiri & FUDR
5/13/19 HAI pump catheter dislodge, nearly hemorrhaged to death
6/10/19 5FU


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