Thought I was ready I wasn't need advice please

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

Thought I was ready I wasn't need advice please

Postby worriedson714 » Wed Oct 13, 2021 11:02 am

Hello all ,
So the nightmare seems to continue my dad's chemotherapy has been stopped after only 5 cycles of folfiri cause oncologist says that's enough to know it's never going to work . I honestly think that's way to soon to stop it after last week when oncologist even told us he didn't expect much results cause it was to soon well guess he changed his mind . The growth of the tumor was only " mild " the same growth as there was without the chemo anyone else think this is to soon to stop chemo ? Now they are pushing my dad to do risky radiation or clinical trails or 3 months of lonsurf . But I feel like folfiri could still work if given the time to work is that crazy of me ?
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: Thought I was ready I wasn't need advice please

Postby catstaff » Wed Oct 13, 2021 11:38 am

If you can, I'd suggest you seek a second opinion. We were lucky enough to have had significant success with five cycles of folfiri+bev but they didn't stop it. It's only been suspended due to his small bowel obstruction (preparing for surgery on that now).

Is this his only met? Proton-beam radiation may be sufficiently safe. It is more targeted than X-rays and can be used for patients who have had significant X-ray exposure. The downside is that there are relatively few facilities and it is more expensive (and I don't know what insurance may say about it).
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: Thought I was ready I wasn't need advice please

Postby worriedson714 » Wed Oct 13, 2021 11:56 am

catstaff wrote:If you can, I'd suggest you seek a second opinion. We were lucky enough to have had significant success with five cycles of folfiri+bev but they didn't stop it. It's only been suspended due to his small bowel obstruction (preparing for surgery on that now).

Is this his only met? Proton-beam radiation may be sufficiently safe. It is more targeted than X-rays and can be used for patients who have had significant X-ray exposure. The downside is that there are relatively few facilities and it is more expensive (and I don't know what insurance may say about it).


Well that is tricky cause yes he only has one met but the soft tissue around it was mentioned to appear cancerous to but all the cancer is in his pelvis is one spot . I don't know if that means one met or not and working on second opinions now .
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: Thought I was ready I wasn't need advice please

Postby catstaff » Wed Oct 13, 2021 12:05 pm

That would be most likely a local recurrence, which isn't exactly a "met" though we often call it that. If it's the only one he may be accepted for proton therapy if it's appropriate.
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: Thought I was ready I wasn't need advice please

Postby worriedson714 » Wed Oct 13, 2021 12:20 pm

Yep its called a local reaccurance I thought that was better then it spreading but seems i was wrong i got a call into a photon radiation place now .
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


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