bad news

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worriedson714
Posts: 48
Joined: Mon May 03, 2021 4:27 pm
Facebook Username: jasonbeck

bad news

Postby worriedson714 » Mon Oct 11, 2021 8:48 pm

Hello all ,
So my dad's scan showed his tumor is growing basically the same as it did before chemo which is heartbreaking news for us . I am sure someone has been in this situation should I expect the oncologist to cancel chemo weds ? It's only been 5 cycles we are hoping maybe it's just to soon to see results from the chemo ? Any help I will be grateful just hate going into oncologist appointments have no idea what's going to happen I like to be prepared with questions .
My Dad was DX - 3/19 stage 3 rectal cancer
Folfox - 6/ 2019 threw 10/2019
Rad - 4/ 2019 threw 5/2019
12/ 19 - Abdominal Perineal Resection - Cancer left and permanent colostomy
9/21- Removal of prostate and bladder- Permanent Urostomy still cancer left
5/28/21 - Positive Biopsy Mostly necrotic tumor
6/14/21 - Sepsis with obstructive uropathy needed nephrostomy tube
7/19/21 Kidney infection
7/28/21-Started folfiri
8/3/21 - Blood Clots in lungs and leg
10/13/21 Chemo stopped

stu
Posts: 1528
Joined: Sat Aug 17, 2013 5:46 pm

Re: bad news

Postby stu » Tue Oct 12, 2021 2:00 am

Hi ,
Sorry to hear his tumour has grown ! That is very disappointing news ! However there is a subgroup of patients do respond to second line treatment ! I would expect they will consider switching or wait a bit longer on this chemo.
Is there a surgical option !
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 .

Claudine
Posts: 562
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: bad news

Postby Claudine » Tue Oct 12, 2021 9:44 am

It is very difficult to hear that chemo isn't doing its job. But like Stu said - if this was first line treatment, there are other options. My husband failed Xelox (Xeloda + oxaliplatin), but responded very well to Folfiri + Avastin. Maybe the opposite for your father?
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A
No primary (involuted?)
Lytic tumor L4 vertebrae, EBRT 04/18, SBRT 02/19
Resect small intestine 05/18 (no cancer - Crohn's)
Failed adjuvant Xelox
Folfiri + Avastin 03/19 to 01/20
6.7 cm left adrenal mass 03/19, successful resection 02/20
CEA since 03/19: high 81.1, low 3.2, now 66.1
Scan 03/19: Multiple small lung nodules, now gone/calcified
PET 04/20 uptake by L4
L3-L4-L5 fusion surgery and partial corpectomy 05/20
Scan 09/17/2021: stable

worriedson714
Posts: 48
Joined: Mon May 03, 2021 4:27 pm
Facebook Username: jasonbeck

Re: bad news

Postby worriedson714 » Tue Oct 12, 2021 1:18 pm

stu wrote:Hi ,
Sorry to hear his tumour has grown ! That is very disappointing news ! However there is a subgroup of patients do respond to second line treatment ! I would expect they will consider switching or wait a bit longer on this chemo.
Is there a surgical option !
Take care ,
Stu

This is second line he had folfox a few years back so hopefully there is a 3rd line I am praying for one and surgery they say would be tough cause of location same as radiation . They could be done but surgery carries a risk of not getting it all and radiation they said is 50 percent likely to damage small bowls so other options look bleak . See oncologist tomorrow I am expecting the worse .
My Dad was DX - 3/19 stage 3 rectal cancer
Folfox - 6/ 2019 threw 10/2019
Rad - 4/ 2019 threw 5/2019
12/ 19 - Abdominal Perineal Resection - Cancer left and permanent colostomy
9/21- Removal of prostate and bladder- Permanent Urostomy still cancer left
5/28/21 - Positive Biopsy Mostly necrotic tumor
6/14/21 - Sepsis with obstructive uropathy needed nephrostomy tube
7/19/21 Kidney infection
7/28/21-Started folfiri
8/3/21 - Blood Clots in lungs and leg
10/13/21 Chemo stopped

stu
Posts: 1528
Joined: Sat Aug 17, 2013 5:46 pm

Re: bad news

Postby stu » Wed Oct 13, 2021 4:43 am

So sorry , the way I scrolled back I did not see your signature !
Hope today brings some options . I notice some people are using Immunotherapy in trials in the U.K. even although they are not MSI . I think the theory behind it if sufficient tumour mutation burden is reach it may become an option! Might be worth finding out plus get the proper science from someone reliable . Ha !
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 .

catstaff
Posts: 165
Joined: Wed Mar 03, 2021 11:37 am

Re: bad news

Postby catstaff » Wed Oct 13, 2021 11:48 am

In the US at least, clinical trials for immunotherapy for MSS tumors generally include some experimental drug or vaccine to try to prime the immune system. PD-1 inhibitors almost never work alone for immunologically "cold" tumors, which most colorectals are. I am pretty hopeful that one or more of these approaches will work, but it may be a while before we know.
D/H Dx 10/2019 RC age 61
Clinical T4bN2M1a (common iliac and para-aortic lymph nodes)
MSS KRAS G12D
CRT 11/19-1/20 FOLFOX 3/20-7/20
Pelvic exenteration w/LAR 8/20
ypT4bN0Mx G3 0/14 nodes LVI not seen PNI-
CEA 10/19:20, 1/20-11/20:1.6, 4.3, 3.4, 2.7, 2/21:9.0 3/21:18,40 4/21:28,19, 5/21:13.3,8.6
PET 3/21 recurrence in distal nodes, L5 vertebra, pelvis
FOLFIRI+bev 3/21-

stu
Posts: 1528
Joined: Sat Aug 17, 2013 5:46 pm

Re: bad news

Postby stu » Wed Oct 13, 2021 2:16 pm

Catstaff
You clearly have a finger on the pulse so I will run it by you and see if this lines up with what you are saying .
It’s a Phase 3 trial ! Leap-017, adenocarcanoma
Lenvatinib and Pembrolizumab the other arm being Lonsurf with regorafenib .

Does that sound about right ! Am I grasping this ???
Would love to know if I am getting the plot on what they are trialing ?
Thanks for your time !
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 .

catstaff
Posts: 165
Joined: Wed Mar 03, 2021 11:37 am

Re: bad news

Postby catstaff » Thu Oct 14, 2021 2:55 pm

It appears that lenvatinib is a multikinase inhibitor that particularly works on VEGFR kinases, so a sort of super-Avastin. It is being combined with pembrolizumab (Keytruda) for several cancers and just got FDA approval for endometrial cancer, according to Dr. Google. The LEAP abstract claims lenvatinib increases the "good" white cells (the ones that attack) and decreases the "traitor" ones (the ones that tend to protect the tumor) since VEGF, among its other activities, seems to affect the immune system.

They would be comparing it with a more standard third-line treatment in this case (Lonsurf+regorafenib).
D/H Dx 10/2019 RC age 61
Clinical T4bN2M1a (common iliac and para-aortic lymph nodes)
MSS KRAS G12D
CRT 11/19-1/20 FOLFOX 3/20-7/20
Pelvic exenteration w/LAR 8/20
ypT4bN0Mx G3 0/14 nodes LVI not seen PNI-
CEA 10/19:20, 1/20-11/20:1.6, 4.3, 3.4, 2.7, 2/21:9.0 3/21:18,40 4/21:28,19, 5/21:13.3,8.6
PET 3/21 recurrence in distal nodes, L5 vertebra, pelvis
FOLFIRI+bev 3/21-

worriedson714
Posts: 48
Joined: Mon May 03, 2021 4:27 pm
Facebook Username: jasonbeck

Re: bad news

Postby worriedson714 » Thu Oct 14, 2021 3:23 pm

Catstaff how does one go about finding these clincial trails ? oncologist suppose to have clinical trail people call us hasn't happened yet .

Also anyone have experience with photon radiation ? Got a appointment for my dad with a photon radiation center
My Dad was DX - 3/19 stage 3 rectal cancer
Folfox - 6/ 2019 threw 10/2019
Rad - 4/ 2019 threw 5/2019
12/ 19 - Abdominal Perineal Resection - Cancer left and permanent colostomy
9/21- Removal of prostate and bladder- Permanent Urostomy still cancer left
5/28/21 - Positive Biopsy Mostly necrotic tumor
6/14/21 - Sepsis with obstructive uropathy needed nephrostomy tube
7/19/21 Kidney infection
7/28/21-Started folfiri
8/3/21 - Blood Clots in lungs and leg
10/13/21 Chemo stopped

catstaff
Posts: 165
Joined: Wed Mar 03, 2021 11:37 am

Re: bad news

Postby catstaff » Thu Oct 14, 2021 5:13 pm

https://clinicaltrials.gov

(Proton beam. X-rays are photons :-) )
D/H Dx 10/2019 RC age 61
Clinical T4bN2M1a (common iliac and para-aortic lymph nodes)
MSS KRAS G12D
CRT 11/19-1/20 FOLFOX 3/20-7/20
Pelvic exenteration w/LAR 8/20
ypT4bN0Mx G3 0/14 nodes LVI not seen PNI-
CEA 10/19:20, 1/20-11/20:1.6, 4.3, 3.4, 2.7, 2/21:9.0 3/21:18,40 4/21:28,19, 5/21:13.3,8.6
PET 3/21 recurrence in distal nodes, L5 vertebra, pelvis
FOLFIRI+bev 3/21-

stu
Posts: 1528
Joined: Sat Aug 17, 2013 5:46 pm

Re: bad news

Postby stu » Fri Oct 15, 2021 1:43 am

Thank you so much catstaff . That is very helpful and I am passing it along to someone who may benefit !
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 .

DarknessEmbraced
Posts: 3651
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: bad news

Postby DarknessEmbraced » Sat Oct 16, 2021 7:51 am

I'm sorry his tumor grew. *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! :)

stu
Posts: 1528
Joined: Sat Aug 17, 2013 5:46 pm

Re: bad news

Postby stu » Mon Oct 18, 2021 8:51 am

Hi ,
Just wondered how your dad is doing ? Is he any further forward with his consultations ?
Hope your holding up ok !
Thinking of you both !
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 .

worriedson714
Posts: 48
Joined: Mon May 03, 2021 4:27 pm
Facebook Username: jasonbeck

Re: bad news

Postby worriedson714 » Mon Oct 18, 2021 6:50 pm

stu wrote:Hi ,
Just wondered how your dad is doing ? Is he any further forward with his consultations ?
Hope your holding up ok !
Thinking of you both !
Stu

He has a lot of appointments coming up proton radiation Consult Oct 27th Nov 3rd out radiation oncologist Nov 7th another oncologist working on trails waiting for call back we on vacation now dad wanted to go before medical stuff but now he is having confusion and sedation problems from a oxy and Lyrica increase Me I am a mess I don't think I can handle losing him
My Dad was DX - 3/19 stage 3 rectal cancer
Folfox - 6/ 2019 threw 10/2019
Rad - 4/ 2019 threw 5/2019
12/ 19 - Abdominal Perineal Resection - Cancer left and permanent colostomy
9/21- Removal of prostate and bladder- Permanent Urostomy still cancer left
5/28/21 - Positive Biopsy Mostly necrotic tumor
6/14/21 - Sepsis with obstructive uropathy needed nephrostomy tube
7/19/21 Kidney infection
7/28/21-Started folfiri
8/3/21 - Blood Clots in lungs and leg
10/13/21 Chemo stopped

stu
Posts: 1528
Joined: Sat Aug 17, 2013 5:46 pm

Re: bad news

Postby stu » Tue Oct 19, 2021 2:36 am

So sorry to read this !
I am hoping that some of these options you are investigating help prolong his life !
My mum is the same with an morphine based meds . Knock her right off ! You might need to speak to his team about them . Some people are just really sensitive to opiates !
Mortality is a wrestle most of us struggle with ! Speak to your GP if required as your health matters too!
Much love ,
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 .


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