Any Stage IV currently in NEDville? Please share any advice or tips? P

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

Re: Any Stage IV currently in NEDville? Please share any advice or tips? P

Postby lovelife789 » Mon Mar 12, 2018 10:52 pm

Exercising actually helps combat fatigue. I pushed myself in the beginning to just get up and walk! After a couple of rounds of chemo, I don't get that fatigue like in the beginning. I need to get back into that walking routine as I've gotten lazy the last couple of months.


You are so good Robin!!

I started a few personal training sessions towards the end of my chemotherapy and it was brutal, I had no muscle (very little left after two major surgeries), I couldn't even stand straight and I felt like giving up on my third push up. Keep it up! You inspired me to try harder! Thank you! :oops:
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

Faith42
Posts: 31
Joined: Mon Sep 01, 2014 4:37 am
Location: New Mexico

Re: Any Stage IV currently in NEDville? Please share any advice or tips? P

Postby Faith42 » Thu Mar 22, 2018 2:17 am

Hello all. I am just checking in. I updated my signature line. They are making leaps and bounds in cancer research. One should never lose hope and know that you can be the person in it for the long game.
Mom 42 at Dx
Child 11 yo
Dx 1/12 Stage IIIT N2b. 11/57 nodes
Chemo 3/12
Dx 8/14 Stage IV to lung
10/14 2 lung mets surgically removed. 2 VATS left and right
Chemo 4/15
Rising CEA and met to right lobe of liver 1 cm. surgery in 6/15
Rising CEA and cryoabeltion 10 mm on left lung in 12/16
Rising CEA and met to liver. Surgery 10/17
Cryoabeltion 12/17
NED 2/14/18
Warrior and Fighter

mpbser
Posts: 912
Joined: Wed Apr 19, 2017 11:52 am

Re: Any Stage IV currently in NEDville? Please share any advice or tips? P

Postby mpbser » Thu Mar 22, 2018 11:55 am

lovelife789, I just caught your comment. Thank you so much for paying attention!
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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hopeful
Posts: 1372
Joined: Mon Jan 04, 2010 11:43 am

Re: Any Stage IV currently in NEDville? Please share any advice or tips? P

Postby hopeful » Thu Mar 22, 2018 7:25 pm

There are likely lots more Stage IV survivors who just don't frequent the forum anymore. I used to be hear every day, but my husband's cancer and treatments have been over for 8 plus years. Life goes on and things get busy. We meet lots of cancer survivors in everyday life as well. Keep the faith, eat well, and keep exercising. My husband still walks several miles per day, weather permitting.
Caregiver to husband diagnosed 11/09 stage IIIb colon cancer
Surgery 11/5/09
12 rounds FOLFOX beginning 12/18/09
Folfox finished 6/3/10
Last scan Jan 2015
NED since Dec. 2009

heiders33
Posts: 347
Joined: Sat Nov 04, 2017 11:08 am

Re: Any Stage IV currently in NEDville? Please share any advice or tips? P

Postby heiders33 » Wed Mar 28, 2018 6:29 am

gfpiv wrote:
Exercise is a fantastic way to reduce risk of recurrence IMHO. Better diet probably is too. I tried to reduce sugar and add fiber, and added Vit D, baby aspirin, coriolus versicolor PSK mushroom, and BCM curcumin. Though I have been slacking off on these supplements for the past few years, I still do as much exercise as possible.




I already take probiotics, Vitamin DIII, and mushroom extract recommended by a integrative care doctor at MSK. I am trying to get a follow-up appointment with him, but in the meantime I would like to get started on some of these other supplements. I have started eating tree nuts every day. Can anyone tell me what dosage of aspirin and curcumin they are taking? Do you take curcumin with pepper or piperine? https://examine.com/supplements/curcumin/ Thanks for any help you can give!
36 year-old female
May 2017: Dx rectal cancer T3N2M0
MSS, KRAS G12D
6/17: 28 days chemorad
9/17: LAR/loop ileostomy
10/17 - 2/18: XELOX six rounds
3/18: reversal
5/18: CT liver spot, blood counts normal
8/18: Abnormal PET, CEA 2.4
9/18: liver resection/HAI pump
10/18: Clear CT/sigmoidoscopy
10/18 - 4/19: 6MO FUDR/5FU
7/19 - Clear CT

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juliej
Posts: 3036
Joined: Thu Aug 05, 2010 12:59 pm

Re: Any Stage IV currently in NEDville? Please share any advice or tips? P

Postby juliej » Wed Mar 28, 2018 6:19 pm

heiders33 wrote:I already take probiotics, Vitamin DIII, and mushroom extract recommended by a integrative care doctor at MSK. I am trying to get a follow-up appointment with him, but in the meantime I would like to get started on some of these other supplements. I have started eating tree nuts every day. Can anyone tell me what dosage of aspirin and curcumin they are taking? Do you take curcumin with pepper or piperine? https://examine.com/supplements/curcumin/ Thanks for any help you can give!

I take Life Extension's Super Bio-Curcumin, a 400 mg capsule every day, on the recommendation of my integrative care doc. It's seven times more absorbable than conventional curcumin extracts and it remains in the bloodstream almost twice as long. I took twice that dose during treatment, but only take one capsule now for maintenance. I highly recommend it!

http://www.lifeextension.com/Vitamins-Supplements/item00407/Super-Bio-Curcumin

Hope this helps!
Juliej
Stage IV, liver/lung mets 8/4/2010
Xelox+Avastin 8/18/10 to 10/21/11
LAR, liver resec, HAI pump 11/11
Double lung surgery + ileo reversal 2/12
Adjuvant Xeloda 3-9/12
VATS rt. lung 12/21/12 - benign granuloma!
NED 3/17/12 to 6/13/2019, CEA<1

heiders33
Posts: 347
Joined: Sat Nov 04, 2017 11:08 am

Re: Any Stage IV currently in NEDville? Please share any advice or tips? P

Postby heiders33 » Fri Apr 06, 2018 6:45 am

Thanks, juliej! I just heard back from my integrative care doctor and he said to take this curcumin supplement twice daily. It seems similar to what you posted. https://www.amazon.com/gp/product/B00KI ... 0UWR&psc=1

He also recommended 81 mg of enteric-coated aspirin once per day.

Ordering these on Amazon now.
36 year-old female
May 2017: Dx rectal cancer T3N2M0
MSS, KRAS G12D
6/17: 28 days chemorad
9/17: LAR/loop ileostomy
10/17 - 2/18: XELOX six rounds
3/18: reversal
5/18: CT liver spot, blood counts normal
8/18: Abnormal PET, CEA 2.4
9/18: liver resection/HAI pump
10/18: Clear CT/sigmoidoscopy
10/18 - 4/19: 6MO FUDR/5FU
7/19 - Clear CT

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henry123
Posts: 198
Joined: Sun Oct 08, 2017 3:25 am

Re: Any Stage IV currently in NEDville? Please share any advice or tips? P

Postby henry123 » Mon Apr 30, 2018 7:08 am

heiders33 wrote:
gfpiv wrote:
Exercise is a fantastic way to reduce risk of recurrence IMHO. Better diet probably is too. I tried to reduce sugar and add fiber, and added Vit D, baby aspirin, coriolus versicolor PSK mushroom, and BCM curcumin. Though I have been slacking off on these supplements for the past few years, I still do as much exercise as possible.




I already take probiotics, Vitamin DIII, and mushroom extract recommended by a integrative care doctor at MSK. I am trying to get a follow-up appointment with him, but in the meantime I would like to get started on some of these other supplements. I have started eating tree nuts every day. Can anyone tell me what dosage of aspirin and curcumin they are taking? Do you take curcumin with pepper or piperine? https://examine.com/supplements/curcumin/ Thanks for any help you can give!


I think you are doing great as far as supplements go. Keep doses to minimal.
Try to reduce animal protein from meats and dairy in your diet. Add some veggie juices to your daily routine.

I am taking 150 mg aspirin and 2 tablets of curcumin with piperine.
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
Aspirin start
6/18 1.5 CT clear
12/18 1.1 CT Clear NED
6/19 .9 CT clear
9/19 1.2
Vegan yoga juicing
Still on opdivo

Siti
Posts: 46
Joined: Thu Aug 01, 2019 10:58 am

Re: Any Stage IV currently in NEDville? Please share any advice or tips? P

Postby Siti » Tue Aug 20, 2019 2:38 am

juliej wrote:
heiders33 wrote:I already take probiotics, Vitamin DIII, and mushroom extract recommended by a integrative care doctor at MSK. I am trying to get a follow-up appointment with him, but in the meantime I would like to get started on some of these other supplements. I have started eating tree nuts every day. Can anyone tell me what dosage of aspirin and curcumin they are taking? Do you take curcumin with pepper or piperine? https://examine.com/supplements/curcumin/ Thanks for any help you can give!

I take Life Extension's Super Bio-Curcumin, a 400 mg capsule every day, on the recommendation of my integrative care doc. It's seven times more absorbable than conventional curcumin extracts and it remains in the bloodstream almost twice as long. I took twice that dose during treatment, but only take one capsule now for maintenance. I highly recommend it!

http://www.lifeextension.com/Vitamins-Supplements/item00407/Super-Bio-Curcumin

Hope this helps!
Juliej


Hi Julie,

May I ask where you buy your PSK from and in what form? Did you take it together with chemo? What was your dosage?

Thank you for sharing :)
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 | BRAF normal
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

TinaFish
Posts: 178
Joined: Sun Jul 21, 2019 10:11 am

Re: Any Stage IV currently in NEDville? Please share any advice or tips? P

Postby TinaFish » Tue Aug 20, 2019 9:35 pm

Lee wrote:I'm bumping this thread back up to the top. KNOW there are many people out there who are stage IV survivors (many in NEDville). They just do not check in as often. If you do a search, you will find other threads asking the same question.

Know that it is possible to beat this cancer and MANY stage IV people have.

Exercise is a great start (by some reports by 50%). So if you are not exercising now, find something you enjoy and stick with it.

Lee


This is my first time seeing this thread! I'm going to keep it in my back pocket so that when I get to NED (fingers crossed), I can read all of the great tips!

So, exercise... I don't dare. I lost 20 lbs during my first two months since diagnosis. I just don't dare. Would weight-lifting be helpful? Or does it need to be cardio exercise?
F 45, single mother to son, 7 and daughter, 3
DX: stage 4 Rectal Cancer June 2019
Tumor Location: ? cm above anal verge
Tumor type: Adenocarcinoma
Tumor size: 5 cm
Tumor grade: ?
TNM code: ?
Stage : Stage IV-B
# of cancerous lymph nodes: ?
Mets: Numerous mets to liver, lungs
CEA: 22 in July; 11 as of August 15, 7 as of Sept 20
MSI status: MSS
KRAS/BRAF status: KRAS mutation
surgery: TBD
Ostomy surgery: TBD
Radiation therapy: TBD
Chemotherapy : CAPEOX+Avastin, 6 cycles, with CT scans after 3rd and 6th cycle.

Rock_Robster
Posts: 290
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: Any Stage IV currently in NEDville? Please share any advice or tips? P

Postby Rock_Robster » Wed Aug 21, 2019 2:43 am

TinaFish wrote:
Lee wrote:So, exercise... I don't dare. I lost 20 lbs during my first two months since diagnosis. I just don't dare. Would weight-lifting be helpful? Or does it need to be cardio exercise?

Strength training is good, but actually it doesn’t need to be that intense. 4-5 hours per week of moderate walking was associated with a 30% risk reduction in a recent study. And if you go bike-riding or swimming, only a couple of hours per week will do it. At these levels you probably aren’t burning so many calories as to worry about weight loss, and hopefully the extra movement will curb fatigue and stimulate your appetite anyway (as it does for me).

There was another study which showed that high-intensity interval training can actually halt tumor growth completely for up to 24 hours, but anyone who can do HIIT on chemo is a tougher human than me...
Male 37; Melbourne, Australia
10/2018 Dx 3.5cm RC adenocarcinoma, 12cm from AV
Mod diff, EMVI+ LVI+ PNI-
3 LN; 4 liver mets, resectable
pT3pN1apM1a; Stage IVa. MSS, NRAS (G13R)
CEA: Oct-18= 12; Nov-18= 14, Mar-19= 2.4, Aug-19 <2.0
11/18 - FOLFOX x 6
3/19 - Liver resection
4-5/19 - 25 x pelvic radiation; complete met. response, TRG 3
07/19 - ULAR (robot), temp ileo, 1/27 LN+
08/19 - Missed liver spot
08/19 - FOLFOX x 1, FOLFOXIRI x 1, FOLFIRI x 2
10/19 - Planned liver resection #2 & ileo reversal

User avatar
henry123
Posts: 198
Joined: Sun Oct 08, 2017 3:25 am

Re: Any Stage IV currently in NEDville? Please share any advice or tips? P

Postby henry123 » Fri Aug 30, 2019 4:11 am

TinaFish wrote:
Lee wrote:I'm bumping this thread back up to the top. KNOW there are many people out there who are stage IV survivors (many in NEDville). They just do not check in as often. If you do a search, you will find other threads asking the same question.

Know that it is possible to beat this cancer and MANY stage IV people have.

Exercise is a great start (by some reports by 50%). So if you are not exercising now, find something you enjoy and stick with it.

Lee


This is my first time seeing this thread! I'm going to keep it in my back pocket so that when I get to NED (fingers crossed), I can read all of the great tips!

So, exercise... I don't dare. I lost 20 lbs during my first two months since diagnosis. I just don't dare. Would weight-lifting be helpful? Or does it need to be cardio exercise?



Tina
I would recommend yoga and breathing exercises rather than intense exercise as there is a possibility of getting fractures and other injuries. Already the body is in a compromised state due to chemo and general weakness .
Walking and stretching within limits is also a good option . you can slowly increase the duration and intensity of your exercises but very cautiously.
Breathing exercises and meditation also strengthen your mind and will power which is very important along with physical well-being to be able to handle the aftermath of disease and treatment.
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
Aspirin start
6/18 1.5 CT clear
12/18 1.1 CT Clear NED
6/19 .9 CT clear
9/19 1.2
Vegan yoga juicing
Still on opdivo

Lee
Posts: 5952
Joined: Sun Apr 16, 2006 4:09 pm

Re: Any Stage IV currently in NEDville? Please share any advice or tips? P

Postby Lee » Sat Aug 31, 2019 9:01 pm

henry123 wrote:
TinaFish wrote:
Lee wrote:I'm bumping this thread back up to the top. KNOW there are many people out there who are stage IV survivors (many in NEDville). They just do not check in as often. If you do a search, you will find other threads asking the same question.

Know that it is possible to beat this cancer and MANY stage IV people have.

Exercise is a great start (by some reports by 50%). So if you are not exercising now, find something you enjoy and stick with it.

Lee


This is my first time seeing this thread! I'm going to keep it in my back pocket so that when I get to NED (fingers crossed), I can read all of the great tips!

So, exercise... I don't dare. I lost 20 lbs during my first two months since diagnosis. I just don't dare. Would weight-lifting be helpful? Or does it need to be cardio exercise?




. . . Walking and stretching within limits is also a good option . you can slowly increase the duration and intensity of your exercises but very cautiously.

Best wishes.


I have been a power walker for about 14 yrs now. I actually enjoy it A LOT

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 - 10 years and counting!


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