We got the blood tests back in preparation for the CT scan we have on Friday.
CEA is not good at all. We started in the 6000s+, went down to 300 after chemo. Now it's over 12000. We spoke to our oncologist on the phone and he is not happy with these results either (well, I mean, I wouldn't want to meet the sadist who is happy with these results).
My mum has severe back pain and is sometimes confused in her speech. I feared it might be something bigger, but I hoped it would be chemo brain.
Seeing our oncologist next week to talk about next steps.
My heart is very shattered right now.
Bad News
Bad News
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: Bad News
Hi ,
You mum had a great downward trend on chemo. Is she having a chemo break just now ? Or had a recent scan ?
Your mum’s tumours clearly give off a lot of protein but I would rely more on the scan information .
My own mum became very confused as her electrolytes were knocked off with chemo . Particularly her potassium . She was totally confused and I thought the worst but it was chemo related .
Hold on tight .
Stu
You mum had a great downward trend on chemo. Is she having a chemo break just now ? Or had a recent scan ?
Your mum’s tumours clearly give off a lot of protein but I would rely more on the scan information .
My own mum became very confused as her electrolytes were knocked off with chemo . Particularly her potassium . She was totally confused and I thought the worst but it was chemo related .
Hold on tight .
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: Bad News
Sorry just reread your first line . This is in preparation for her scan . Is this her first scan ?
Stu
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: Bad News
stu wrote:Sorry just reread your first line . This is in preparation for her scan . Is this her first scan ?
Stu
Hey stu, this is her third scan post-diagnosis, but her first after a three month chemo break.
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: Bad News
Hi ,
Got it . But she clearly responded well when she was on chemo .
My mum had a good response to chemo but would have regrowth whilst off it . However it responded just as effectively to it after the break .
Hope the oncologist has a good plan for your mum . It is very overwhelmingly .
Take care,
Stu
Got it . But she clearly responded well when she was on chemo .
My mum had a good response to chemo but would have regrowth whilst off it . However it responded just as effectively to it after the break .
Hope the oncologist has a good plan for your mum . It is very overwhelmingly .
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: Bad News
Thank you for your kind words. Really hope the damage in the liver is manageable, and the spread can be contained.
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: Bad News
For sure . Holding out for that for your mum and for you too .
Stu
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: Bad News
Sorry for the bad news 
I hope the scan gives you more definitive answers and that your onc comes up with a plan to keep fighting.
I hope the scan gives you more definitive answers and that your onc comes up with a plan to keep fighting.Caregiver to my amazing mom (68 at dx)
10/1/18 DX with rectal cancer; CEA 17
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
6/28/19 Reversal and port out
CEA 2.1; 1.9; 2.6; 2.8; 2.3; 2.4; 3.0; 3.4; 3.1; 3.4; 3.0; 3.1; 2.6
Latest update: 8/21/23 Clear CT with CEA 2.6!
Me: 34, first colonoscopy 11/16/18—normal! Come back in 5 years.
10/1/18 DX with rectal cancer; CEA 17
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
6/28/19 Reversal and port out
CEA 2.1; 1.9; 2.6; 2.8; 2.3; 2.4; 3.0; 3.4; 3.1; 3.4; 3.0; 3.1; 2.6
Latest update: 8/21/23 Clear CT with CEA 2.6!
Me: 34, first colonoscopy 11/16/18—normal! Come back in 5 years.
-
WarriorSpouse
- Posts: 220
- Joined: Tue Aug 16, 2016 9:02 pm
Re: Bad News
I am sorry to read your post. I know another thread currently on the board shows great results with Keytruda for similar diagnosis and potential recurrence. Read the posts and be armed with this information prior to your next Oncology visit. Keep up with the changes around us with things like Keytruda, and they may actually help in fighting the next battle ahead. Good Luck!
WS
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
Re: Bad News
I think her KRAS mutation might rule out Keytruda for us, but I'll ask. Thank you.
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
-
DarknessEmbraced
- Posts: 3817
- Joined: Sat Nov 01, 2014 4:54 pm
- Facebook Username: Riann Fletcher
- Location: New Brunswick, Canada
Re: Bad News
I'm sorry your mother is having a hard time!*hugs* I hope you get more answers from her scan!*hugs*
Diagnosed 10/28/14, age 36
Colon Resection 11/20/14, LAR (no illeo)
Stage 2a colon cancer, T3NOMO
Lymph-vascular invasion undetermined
0/22 lymph nodes
No chemo, no radiation
Clear Colonoscopy 04/29/15
NED 10/20/15
Ischemic Colitis 01/21/16
NED 11/10/16
CT Scan moved up due to high CEA 08/21/17
NED 09/25/17
NED 12/21/18
Clear colonoscopy 09/23/19
Clear 5 year scans 11/21/19- Considered cured!
Colon Resection 11/20/14, LAR (no illeo)
Stage 2a colon cancer, T3NOMO
Lymph-vascular invasion undetermined
0/22 lymph nodes
No chemo, no radiation
Clear Colonoscopy 04/29/15
NED 10/20/15
Ischemic Colitis 01/21/16
NED 11/10/16
CT Scan moved up due to high CEA 08/21/17
NED 09/25/17
NED 12/21/18
Clear colonoscopy 09/23/19
Clear 5 year scans 11/21/19- Considered cured!
-
Stewsbetty
- Posts: 170
- Joined: Thu Jul 14, 2016 7:08 am
Re: Bad News
dliu wrote:I think her KRAS mutation might rule out Keytruda for us, but I'll ask. Thank you.
Kras doesn’t rule out Keytruda, however it is usually not recommended for MSS. There is a thread on here that tells of a MSS patient getting Keytruda due to her high tumour mutuational burden. If you check your mom’s tumour testing and see a high number of mutations, it might be something worth looking into.
I have Kras mutation and am MSI h. I have been on Keytruda for 18 months now and have had an amazing response.
Hope the news from your scan isn’t too devastating.
Beth
42yo At diagnosis. Female in BC, Canada
Dx: CC ascending
Right Hemi colectomy 06/16 clear margins
Adenocarcinoma 6cm High Grade
pT3 pN2a Stage 3
10 out of 16 lymph involved
MSI-h, Kras mut, Braf wild
Finished chemo Feb. 2017
PET scan showing active area April 2017
July 2017 CT showing LN mass and spread to other LN
Stage 4
Aug 2017 failed Fofiri
Sept 2017 keytruda scans every 3 months showing shrinkage and stability
November 2018 CT shows only 1 small tumour left
September 2019 clear CT finally NED!!!
Dx: CC ascending
Right Hemi colectomy 06/16 clear margins
Adenocarcinoma 6cm High Grade
pT3 pN2a Stage 3
10 out of 16 lymph involved
MSI-h, Kras mut, Braf wild
Finished chemo Feb. 2017
PET scan showing active area April 2017
July 2017 CT showing LN mass and spread to other LN
Stage 4
Aug 2017 failed Fofiri
Sept 2017 keytruda scans every 3 months showing shrinkage and stability
November 2018 CT shows only 1 small tumour left
September 2019 clear CT finally NED!!!
Re: Bad News
Thank you all for your replies. My mum has been feeling very poorly in the last few days so her oncologist advised against starting treatment again now. He put her on a regime of steroids and fentanyl to get her back into shape. He is currently focusing on her QOL and wants to know how things go in the coming week to be able to reassess. I don't disagree as she has been incredibly frail over the past week. He came to see her at our home, which at least makes him a sweetheart.
The scan showed extensive progression in the liver and moderate ascites. No spread anywhere else which I guess is the good news.
The scan showed extensive progression in the liver and moderate ascites. No spread anywhere else which I guess is the good news.
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: Bad News
Dilu:
The human touch of compassion as demonstrated by your mom’s oncologist in making a home visit to personally see her is sometimes the best medicine.
I am dependent on corticosteroids due to Addison’s disease. I can attest that the steroids will give your mom a generalized uplifting effect - which may make her feel better in and of itself.
I am also on a Fentanyl duragesic patch. Its pain relief is far better for me than oral opiates. The medication in the patch is absorbed by the skin, bypassing the GI tract. The medication is released at a slow, constant rate which provides for more even pain control (fewer pain ups and downs as compared to taking a pain pill orally several times a day).
Your mom’s oncologist is giving thoughtful consideration to her comfort and quality of life. Not to be lost in all the advances of medicine, compassionate care and relief of pain is always to be cherished. I am on Palliative Care and appreciate its model of care.
Karen
The human touch of compassion as demonstrated by your mom’s oncologist in making a home visit to personally see her is sometimes the best medicine.
I am dependent on corticosteroids due to Addison’s disease. I can attest that the steroids will give your mom a generalized uplifting effect - which may make her feel better in and of itself.
I am also on a Fentanyl duragesic patch. Its pain relief is far better for me than oral opiates. The medication in the patch is absorbed by the skin, bypassing the GI tract. The medication is released at a slow, constant rate which provides for more even pain control (fewer pain ups and downs as compared to taking a pain pill orally several times a day).
Your mom’s oncologist is giving thoughtful consideration to her comfort and quality of life. Not to be lost in all the advances of medicine, compassionate care and relief of pain is always to be cherished. I am on Palliative Care and appreciate its model of care.
Karen
Dear friend to Bella Piazza, former Colon Club member (NWGirl).
I have a permanent ileostomy and offer advice on living with an ostomy - in loving remembrance of Bella
I am on Palliative Care for broad endocrine failure + Addison's disease + osteonecrosis of both hips/jaw + immunosuppression. I live a simple life due to frail health.
I have a permanent ileostomy and offer advice on living with an ostomy - in loving remembrance of Bella
I am on Palliative Care for broad endocrine failure + Addison's disease + osteonecrosis of both hips/jaw + immunosuppression. I live a simple life due to frail health.
Re: Bad News
MissMolly, thank you so much for your insight into the effects of these drugs. I just put on her first patch and was very worried, and this comforts me a lot. She has had a lot of trouble with codeine pouches (sorry not sure about the term to describe drugs you dilute in water) and we think it might have had some effect on her general nosedive health-wise.
I am sorry to read about your own medical history and I wish you well on your journey. Thank you so much once again.
I am sorry to read about your own medical history and I wish you well on your journey. Thank you so much once again.
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
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