Just to encourage all who are starting out with a stage 4 diagnosis.
Mum scanned well and has now entered her ninth year since diagnosis.
The first few years were rough but her quality of life is good .
Hope is gives a little light to some on this path.
Stu
Stage 4 Hope
Stage 4 Hope
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .
-
WarriorSpouse
- Posts: 220
- Joined: Tue Aug 16, 2016 9:02 pm
Re: Stage 4 Hope
Great news Stu!
It is always good to read such great news on the Colon Talk community forum.
America sends your Mum warm thoughts and heartfelt wishes for continued good health and success!
WS
It is always good to read such great news on the Colon Talk community forum.
America sends your Mum warm thoughts and heartfelt wishes for continued good health and success!
WS
D/H 47 years old, 10/2014, Stage IV M/CRC, nodes 12/15, para-aortic, 5 cm sigmoid resection, positive Virchow. KRAS mut, MSS, Highly Differentiated, Lynch Neg, 5FU/LV and Avastin 1 YR (Oxi for 5 months), Zeloda/Bev since 01/2016. 02/2019 recurrence para-nodes, back to 5FU/LV Oxy/Bev. It is working again. "...Perseverance is not a long race; it is many short races one after the other."-Walter Elliot
-
teacher2017
- Posts: 275
- Joined: Sat Sep 09, 2017 1:18 pm
- Facebook Username: Lydia Clark
Re: Stage 4 Hope
Wonderful news! Wishing her many more years! I can only hope!
50 yo mom of 2 (15, 18)
DX stage 3c - 12/17 LN. T3
8" colon resection 9/22/17
6.1cm tumor
folfox 11/17-4/18
CEA -1.4 11/8/17
Colonoscopy- 5/18-CLEAR!
Cea -1.8 6/18
Cea -2.1. 8/18
8/10/18 Stage 4
1cm met in seg.8 liver
Liver resection-9/18
Cea -1.5/1.2
Port removal-9/19
Cea -1.2 10/19
Cea -1.1 02/2020
Cea - 1.2 5/20
Cea-1.1 9/20
Cea- 1.3 2/21
Cea.1.3 5/21
DX stage 3c - 12/17 LN. T3
8" colon resection 9/22/17
6.1cm tumor
folfox 11/17-4/18
CEA -1.4 11/8/17
Colonoscopy- 5/18-CLEAR!
Cea -1.8 6/18
Cea -2.1. 8/18
8/10/18 Stage 4
1cm met in seg.8 liver
Liver resection-9/18
Cea -1.5/1.2
Port removal-9/19
Cea -1.2 10/19
Cea -1.1 02/2020
Cea - 1.2 5/20
Cea-1.1 9/20
Cea- 1.3 2/21
Cea.1.3 5/21
-
Gravelyguy
- Posts: 382
- Joined: Thu Jul 05, 2018 6:03 pm
Re: Stage 4 Hope
That is great news, Stu! It is so encouraging for those of us settling into this NED thing. Hope for many more years!
Dave
Dave
6/17 dx mRC t3n1m1 very low rectal tumor 2 liver Mets 1.3 cm and .9 cm
6/17 begin 4 rounds Folfox w/Vectibix
9/17 short course radiation
10/17 rectal and liver resection LAR with coloanal anastomosis (no rectum left)
11/17-3/18 8 rounds Folfox
6/18 still NED!! Takedown
8/28/18 still NED! CEA .8 new low for me
10/18/18 colonoscopy clear
12/12/18 CEA .9 still NED!
6/11/19 CEA 1.0
12/19/19 CEA 1.0 still NED!
6/17/20 CEA 1.1 still NED!
12/15/20 CEA 1.1still NED!
12/16/21 CEA 1.2 still NED!
6/17 begin 4 rounds Folfox w/Vectibix
9/17 short course radiation
10/17 rectal and liver resection LAR with coloanal anastomosis (no rectum left)
11/17-3/18 8 rounds Folfox
6/18 still NED!! Takedown
8/28/18 still NED! CEA .8 new low for me
10/18/18 colonoscopy clear
12/12/18 CEA .9 still NED!
6/11/19 CEA 1.0
12/19/19 CEA 1.0 still NED!
6/17/20 CEA 1.1 still NED!
12/15/20 CEA 1.1still NED!
12/16/21 CEA 1.2 still NED!
Re: Stage 4 Hope
Cheers Stu
Give Mum a hug from all of us
and one for you, too !!
Harmony
CRguy
Give Mum a hug from all of us
and one for you, too !!
Harmony
CRguy
Caregiver x 4
Stage IV A rectal cancer/lung met
17 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far
Stage IV A rectal cancer/lung met
17 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far
Re: Stage 4 Hope
This is such great news, stu!
All the best to you and your mum.
All the best to you and your mum.
Caring for my mum, 65
Sigmoid resection, multiple liver mets
09/05/2018 Dx Stage IV, 6/11 LN - KRAS G12V
28/05/2018 First round of FOLFOX + Avastin
CEA down from 6000+ (05/2018) to 843 (08/2018) to 377 (11/2018)
9/10 rounds with Oxaliplatin
8/10 rounds with Bevacizumab
Sigmoid resection, multiple liver mets
09/05/2018 Dx Stage IV, 6/11 LN - KRAS G12V
28/05/2018 First round of FOLFOX + Avastin
CEA down from 6000+ (05/2018) to 843 (08/2018) to 377 (11/2018)
9/10 rounds with Oxaliplatin
8/10 rounds with Bevacizumab
Re: Stage 4 Hope
That is great news! Hope goes a long ways toward brightening someone's day. Thank you for sharing. We all celebrate every victory.
Diag Feb 5, 2016 Age 45
3 cm tumor 5 cm from verge
Radiation + Xeloda pills - 3000mg 5x week
3/14 - 4/16 - 25 sessions
Shrank just over 50% L nodes 0/13
Remove rectum with temp Ileo 6/17
Reversal 7/20 due to infection
Acute hepatitis August. Chemo cancelled
June to September 2016 - 58 days in hospital
2017
6/16, MRI shadow in lung
Pet - 6.6mm Met in Upper R lobe
7/30 VAT surgery Mass General/Boston
8/24 port
8/30 - 4/28 Folfox. 12 rounds
2018
June CT shows new lung Mets.
July/Oct PETs...CLEAR!
3 cm tumor 5 cm from verge
Radiation + Xeloda pills - 3000mg 5x week
3/14 - 4/16 - 25 sessions
Shrank just over 50% L nodes 0/13
Remove rectum with temp Ileo 6/17
Reversal 7/20 due to infection
Acute hepatitis August. Chemo cancelled
June to September 2016 - 58 days in hospital
2017
6/16, MRI shadow in lung
Pet - 6.6mm Met in Upper R lobe
7/30 VAT surgery Mass General/Boston
8/24 port
8/30 - 4/28 Folfox. 12 rounds
2018
June CT shows new lung Mets.
July/Oct PETs...CLEAR!
Re: Stage 4 Hope
Hello ,
Thank you so much for your good wishes .
My mum was so touched by them . She sincerely hoped it encourages people to press on and seek out windows of opportunity.
Much love to you all Stu
Thank you so much for your good wishes .
My mum was so touched by them . She sincerely hoped it encourages people to press on and seek out windows of opportunity.
Much love to you all Stu
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .
-
Spazzyjanet
- Posts: 54
- Joined: Mon Oct 01, 2018 3:28 pm
- Facebook Username: Heather Stoker
Re: Stage 4 Hope
As of yesterday, it seems that my diagnosis might be landing at Stage IV as well.
I woke up this morning and remembered and my chest lit up with panic and fear. My spreading, if/when confirmed Cancer is also just to the liver- for now.
I see that your Mom got a liver resection.
I have only spoken to a radiologist so far about about the possible spreading, but he made it sound like they would press with FOLFOX and then biopsy later.
I wonder whether we should be doing something more aggressive now?
I woke up this morning and remembered and my chest lit up with panic and fear. My spreading, if/when confirmed Cancer is also just to the liver- for now.
I see that your Mom got a liver resection.
I have only spoken to a radiologist so far about about the possible spreading, but he made it sound like they would press with FOLFOX and then biopsy later.
I wonder whether we should be doing something more aggressive now?
40 yr old, 3 kids. Dx 9/2018, Stage IV
KRAS G12V (resistant to Cetuximab)
CEA levels normal at diagnosis
4.2 cm Tumor, PT3, PN2B
11 of 18 with adenocarcinoma
+ removal of one cancerous node in Peritoneum.
9/2018, Colon resection and Ostomy-- Margins Negative
10/2018, PET shows 6 liver mets
10/2108, begin FOLFOX (Oxi+5 FU)
11/2018, MRI updates potential liver metastasis to 11 mets, both lobes.
KRAS G12V (resistant to Cetuximab)
CEA levels normal at diagnosis
4.2 cm Tumor, PT3, PN2B
11 of 18 with adenocarcinoma
+ removal of one cancerous node in Peritoneum.
9/2018, Colon resection and Ostomy-- Margins Negative
10/2018, PET shows 6 liver mets
10/2108, begin FOLFOX (Oxi+5 FU)
11/2018, MRI updates potential liver metastasis to 11 mets, both lobes.
-
lovelife789
- Posts: 161
- Joined: Thu Aug 24, 2017 5:28 am
Re: Stage 4 Hope
Give your mum a big hug for me!! I don't know how old was she when she was diagnosed and the details of her journey but everytime I read your signature I find hope!
Everytime I get told when people met to somewhere else outside of liver, prognosis dims a lot ... i would get so frustrated.... Then I would read your signature and felt better.
Thank you!!! And best wishes to her being NED forever!!!
Everytime I get told when people met to somewhere else outside of liver, prognosis dims a lot ... i would get so frustrated.... Then I would read your signature and felt better.
Thank you!!! And best wishes to her being NED forever!!!
F/38 - Dx 8 Mar 17, CEA 189.5
Stage IV Sig. Colon, Liver mets, T3N0M1a, KRAS NRAS Wild
3/17- 6/17 - 6 x FOLFOX + Erbitux
7/17 - 1st & 2nd Liver resec
9-12/17' - 13 x FOLFOX
1-6/18 - NED
6/18 - PET SCAN showed a 0.8mm lung nodule, VATs
8/18 - 4/19 - NED
5/19 - recurrence 1 x PALN, 1x common iliac
FOLFIRI + Avastin x 12 - complete response, SBRT
12/19-5/20 - NED
5/20 - recurrence in LNs, tiny liver spots x 2, W n W due to COVID
8/20 - LNs very slightly increased, liver stable, one new liver spot
Stage IV Sig. Colon, Liver mets, T3N0M1a, KRAS NRAS Wild
3/17- 6/17 - 6 x FOLFOX + Erbitux
7/17 - 1st & 2nd Liver resec
9-12/17' - 13 x FOLFOX
1-6/18 - NED
6/18 - PET SCAN showed a 0.8mm lung nodule, VATs
8/18 - 4/19 - NED
5/19 - recurrence 1 x PALN, 1x common iliac
FOLFIRI + Avastin x 12 - complete response, SBRT
12/19-5/20 - NED
5/20 - recurrence in LNs, tiny liver spots x 2, W n W due to COVID
8/20 - LNs very slightly increased, liver stable, one new liver spot
Re: Stage 4 Hope
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .
Re: Stage 4 Hope
Hi Janet ,
Really sorry to hear you require more treatment . Mum went straight to chemo and it was a good plan . It allowed strinkage to occur and pulled in any stray cells . After surgery she did not have any chemo which is where our countries may differ in approach .
Back in 2009 there truely were not the options available for treatment that there are now . I wish you did not have more treatment to face but wish you the very best . Getting a specialist team on board with wise decisions and good clinical judgements was a game changer for mum .
You have many options open to you so take the time you need to seek the best approach .
Once a plan was in place mum felt a lot better .
Take care ,
Stu
Really sorry to hear you require more treatment . Mum went straight to chemo and it was a good plan . It allowed strinkage to occur and pulled in any stray cells . After surgery she did not have any chemo which is where our countries may differ in approach .
Back in 2009 there truely were not the options available for treatment that there are now . I wish you did not have more treatment to face but wish you the very best . Getting a specialist team on board with wise decisions and good clinical judgements was a game changer for mum .
You have many options open to you so take the time you need to seek the best approach .
Once a plan was in place mum felt a lot better .
Take care ,
Stu
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .
Re: Stage 4 Hope
Hi Lovelife ,
The photo is for you with mum’s permission. She was 67 at diagnosis but very fit . She is 76 in the photo and as you can see is keeping well . Sometimes she makes me laugh as it turns out you can do a lot despite missing several parts of your major organs . She has some impairment from chemo but it’s just accepted and dealt with.
The first couple of years were challenging as most of the surgeries and chemo were carried out in that time frame .
The thought of the lung met was so much worse than the reality of it for mum and it really was the easiest process for her to date .
She has two nodules which stay static and have no uptake in a PET scan since 2014 . One is 7mm !! But does not seem to be cancer . She is now on yearly scans .
Her oncology team are really positive with her and think she does best with just surgery . Bit of quality of life at this stage too . In the beginning it was all negative language, half way through it turned to “ doing well” and now they are all fully on board with her approach .
They have been such a blessing in the whole process .
Looking forward to hearing more good news from your signature line.
The photo is for you with mum’s permission. She was 67 at diagnosis but very fit . She is 76 in the photo and as you can see is keeping well . Sometimes she makes me laugh as it turns out you can do a lot despite missing several parts of your major organs . She has some impairment from chemo but it’s just accepted and dealt with.
The first couple of years were challenging as most of the surgeries and chemo were carried out in that time frame .
The thought of the lung met was so much worse than the reality of it for mum and it really was the easiest process for her to date .
She has two nodules which stay static and have no uptake in a PET scan since 2014 . One is 7mm !! But does not seem to be cancer . She is now on yearly scans .
Her oncology team are really positive with her and think she does best with just surgery . Bit of quality of life at this stage too . In the beginning it was all negative language, half way through it turned to “ doing well” and now they are all fully on board with her approach .
They have been such a blessing in the whole process .
Looking forward to hearing more good news from your signature line.
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .
Re: Stage 4 Hope
Hi Stu
Good to see the photo of your Mum and glad she is doing so well. May she continue to be a beacon of hope to you, and to others, including myself on this board.
Kiwi
Good to see the photo of your Mum and glad she is doing so well. May she continue to be a beacon of hope to you, and to others, including myself on this board.
Kiwi
Stage IV Rectal Cancer (39 Year old male at dx)
pT3N0M1 (wish that was M0)
Diagnosed 05 Dec 2012
LAR 05 Jan 2013
VATS 27 Feb 2013
FOLOFX April 2013 - Sep 2013
Clear Scan 03 Dec 2013 - August 2020
Port Out 26 March 2015
pT3N0M1 (wish that was M0)
Diagnosed 05 Dec 2012
LAR 05 Jan 2013
VATS 27 Feb 2013
FOLOFX April 2013 - Sep 2013
Clear Scan 03 Dec 2013 - August 2020
Port Out 26 March 2015
Re: Stage 4 Hope
Thank you Stu! Thats wonderful news!
Dx 3/16 @ 36yrs Stage IIIB
RT Hemi-colectomy
T3N1M0. 2/37 lymph nodes
4/2016 Started 12 rounds of 5 FU & Oxi Chemo
7/2016 Stopped chemo after 5 rounds due to chest pain
8/2017 MUYTH Gene
10/2017 Clear CT Scan; CEA 1.9
5/2018 CEA 447
6/2018 Stage IV w/drop metastases to peritoneal cavity
7/2018 Cytoreductive surgery & Hipec (3 tumors, 2 nodules on bladder, and ovaries removed)
05/2019 Clear CT
10/2019 2 new nodules in pelvic area/CEA 19
11/2019 6 Rounds of Chemo
RT Hemi-colectomy
T3N1M0. 2/37 lymph nodes
4/2016 Started 12 rounds of 5 FU & Oxi Chemo
7/2016 Stopped chemo after 5 rounds due to chest pain
8/2017 MUYTH Gene
10/2017 Clear CT Scan; CEA 1.9
5/2018 CEA 447
6/2018 Stage IV w/drop metastases to peritoneal cavity
7/2018 Cytoreductive surgery & Hipec (3 tumors, 2 nodules on bladder, and ovaries removed)
05/2019 Clear CT
10/2019 2 new nodules in pelvic area/CEA 19
11/2019 6 Rounds of Chemo
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