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

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lovelife789
Posts: 112
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 80.5
Stage IV Sig. Colon, 6 Liver mets, T3N0M1a, KRAS NRAS Wild, G2=Moderately 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 - Clear PET SCAN - CEA 1.4
3/18 - Clear MRI - CEA 0.8
6/30 - PET SCAN showed a lung nodule that grew from 5mm to 8mm - CEA 1.0
Aug - VATs done, colon met cfm

Faith42
Posts: 30
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: 460
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 - Lap left hemi
Adenocarcinoma
5 x 4 x 1 cm
low grade
T3 N2b M1a
Stage IV A
lymph nodes: 9 of 54
8/17 Sub-total colectomy
2nd tumor 5.5 cm T1 N0
CEA: 1.4, 2.1, 1.5, 1.9, 1.9, 2.1, 2.1, 2.4, 1.7, 2.0
MSS/MSI-L
Lynch no; KRAS wild
Immunohistochemsistry: Normal MLH1, MSH2, MSH6, and PMS2
Tumor DNA variants: MTOR, APC, TP53
Liver left hepatectomy seg 4 1/31/18
5/18 NED

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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: 277
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 at T3N2M0
MSS, KRAS
June-July 2017: 28 days of chemo/radiation
September 2017: laparoscopic LAR surgery with loop ileostomy
October 2017 - February 2018: XELOX six rounds
March 2018: reversal
April 2018: CEA 2.1, all blood counts normal
May 2018: CT scan showed liver spot
August 2018: Abnormal PET, CEA 2.4
September 2018: liver resection with HAI pump

User avatar
juliej
Posts: 2859
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 7/13/2018, CEA<1

heiders33
Posts: 277
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 at T3N2M0
MSS, KRAS
June-July 2017: 28 days of chemo/radiation
September 2017: laparoscopic LAR surgery with loop ileostomy
October 2017 - February 2018: XELOX six rounds
March 2018: reversal
April 2018: CEA 2.1, all blood counts normal
May 2018: CT scan showed liver spot
August 2018: Abnormal PET, CEA 2.4
September 2018: liver resection with HAI pump

henry123
Posts: 128
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
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
msi-h Lynch
4/17 regro fail
5/17 cea 28800
5/17 CT inc in size of mes nodes , new 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 normal
1/18 3.6
2/18 2.3
4/18 2.0
opdivo continue
Aspirin start
6/18 1.5 CT clear
8/18 1.3
NED
Vegan yoga juicing apricot


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