Supporting my husband with a new DX *UPDATE*

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melissadc76
Posts: 12
Joined: Tue Dec 04, 2018 5:03 pm
Facebook Username: melissa.syria

Re: Supporting my husband with a new DX *UPDATE 3/25/2019*

Postby melissadc76 » Mon Mar 25, 2019 10:32 am

So I've read about SCANXIETY on here.

My husband finished his 6th round of chemo on Friday. He's gained 10 lbs, looks much healthier, and is able to work out in the yard, build things in his shop.

His iron levels have normalized, he's gotten used to his colostemy, he is no longer pale and sunken looking.

Best of all- (his tumor was fixed to his bladder, which caused difficulty with urination- some days he couldn't pee, some days, just intense pain, some days both) (and intense pelvic pain, difficulty with having to go to the bathroom all night because of mucous and blood from his rectum) HE HAS NO PAIN. He doesn't even take tylenol or anything.

His doctor says he is "breezing through" chemo- he has tired and nauseous days a couple days after being disconnected from his infusion, but then bounces back and is feeling great, active.

So they moved his scan earlier than previously scheduled. I know I always try to read the tea leaves, and I know you can't. But can someone please give their take or opinion: we are just hoping he has had an awesome response to chemo: because of the improvement in pain, in bladder function, and the lack of bleeding from his rectum.

Please tell me these are all good signs and we will have an amazing scan that will lead to his tumor being operable.

P.S. I love his oncologist. I asked him, "What if this chemo doesn't work?" He looked me right in the eye and said, "It will work." We needed that hopeful attitude and confidence.
Caregiver to my DH (48 yo)
5 kids (2 mine 21 & 16, 2 ours 11 & 10, 1 adopting 2)
Dx Sigmoid Adenocarcinoma 10/25/2018
No staging yet, told "Inoperable" and "about the size of an orange"
Emerg Colostomy bowel block 10/25/2018
New colostomy surgery 11/5/2018 (new placement of original botched placement?)
CT scans of lungs and liver look "clear"
Huntsman Cancer Institute surgery consult
Tx Plan: Neoadj Chemo FOLFOX 1/10/2019-?
CEA 1.9 (I guess it's not a marker for him).

Gravelyguy
Posts: 229
Joined: Thu Jul 05, 2018 6:03 pm

Re: Supporting my husband with a new DX *UPDATE*

Postby Gravelyguy » Mon Mar 25, 2019 11:24 am

Hi Melissa,

I don't think any tea leaves are needed. All of his diminished symptoms point to the chemo doing its job! Hope the scans show that he is ready for surgery!

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 clear scans, CEA .9 still NED!
6/11/19 clear scans CEA 1.0

User avatar
LPL
Posts: 650
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

Re: Supporting my husband with a new DX *UPDATE 3/25/2019*

Postby LPL » Mon Mar 25, 2019 3:54 pm

melissadc76 wrote:So I've read about SCANXIETY on here.

My husband finished his 6th round of chemo on Friday. He's gained 10 lbs, looks much healthier, and is able to work out in the yard, build things in his shop.

His iron levels have normalized, he's gotten used to his colostemy, he is no longer pale and sunken looking.

Best of all- (his tumor was fixed to his bladder, which caused difficulty with urination- some days he couldn't pee, some days, just intense pain, some days both) (and intense pelvic pain, difficulty with having to go to the bathroom all night because of mucous and blood from his rectum) HE HAS NO PAIN. He doesn't even take tylenol or anything.

His doctor says he is "breezing through" chemo- he has tired and nauseous days a couple days after being disconnected from his infusion, but then bounces back and is feeling great, active.

So they moved his scan earlier than previously scheduled. I know I always try to read the tea leaves, and I know you can't. But can someone please give their take or opinion: we are just hoping he has had an awesome response to chemo: because of the improvement in pain, in bladder function, and the lack of bleeding from his rectum.

Please tell me these are all good signs and we will have an amazing scan that will lead to his tumor being operable.

P.S. I love his oncologist. I asked him, "What if this chemo doesn't work?" He looked me right in the eye and said, "It will work." We needed that hopeful attitude and confidence.

Melissa, please now that sometimes if there is something you hope has shrunk and it might not ‘look’ like it has on CT - the inside can be mostly dead cells. These things are not revealed until looked at on pathology. It sounds really good reading about how your husband is feeling :)
DH @ 65 DX 4/11/16 CC recto-sigmoid junction
Adenocarcenoma pt 35x15x9mm G3(biopsi) G1(surgical)
Mets 3 Liver resectable
T4aN1bM1a Stage IVa 2/9 LN
MSS, KRAS-mut G13D
CEA & CA19-9: 5/18 2.5 78 8/17 1.4 48 2/14/17 1.8 29
4 Folfox 6/15-7/30 (b4 liver surgery) 8 after
CT: 8/8 no change 3/27/17 NED->Jan-19 mets to lung
:!: Steroid induced hyperglycemia dx after 3chemo
Surgeries 2016: 3/18 Emergency colostomy
5/23 Primary+gallbl+stoma reversal+port 9/1 Liver mets
RFA 2019: Feb lung met

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juliej
Posts: 3048
Joined: Thu Aug 05, 2010 12:59 pm

Re: Supporting my husband with a new DX *UPDATE 3/25/2019*

Postby juliej » Thu Mar 28, 2019 3:59 pm

melissadc76 wrote:Please tell me these are all good signs and we will have an amazing scan that will lead to his tumor being operable.

These facts -- that he is not in pain anymore, he is gaining weight back, he bounces back from chemo, he is feeling better than he has in a long time -- all are great signs that the chemo is working! :D :D :D

Step one is getting the chemo to shrink the tumors. Step two is surgically removing the tumors if possible. It sounds like you are well on your way to step two!

Make sure your surgeon is a board-certified colorectal surgeon. There are some brilliant docs out there so make sure you've got someone you can trust and who has extensive experience with the type of surgery he needs. Don't be afraid of getting a second opinion. It will either confirm your choice of the first surgeon or let you know there's another possibility. You have to be proactive to get the best care.

Juliej
Stage IVb, liver/lung mets 8/4/2010
Xelox+Avastin 8/18/10 to 10/21/2011
LAR, liver resec, HAI pump 11/2011
Adjuvant Irinotecan + FUDR
Double lung surgery + ileo reversal 2/2012
Adjuvant FUDR + Xeloda
VATS rt. lung 12/2012 - benign granuloma!
VATS left lung 11/2013
NED 11/22/13 to 9/23/2019, CEA<1

DarknessEmbraced
Posts: 3348
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: Supporting my husband with a new DX *UPDATE*

Postby DarknessEmbraced » Sun Mar 31, 2019 9:02 am

I'm glad his chemo is going well and I hope he gets good scans!*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

radnyc
Posts: 390
Joined: Tue Apr 06, 2010 6:32 pm

Re: Supporting my husband with a new DX *UPDATE*

Postby radnyc » Sun Mar 31, 2019 9:59 am

First off: Take a deep breath. Your battle is starting not ending. In my opinion “incurable” means bunk until all available options have been tried. There are a few people on here who’ve been told that and have survived. First off: 2nd, 3rd or 4th opinions are needed. Go beyond your local hospital/oncologist, try to go to a major cancer center. Look up the list online. Don’t give up, don’t get down on yourself and keep up a can do attitude. This forum is a great place to get some help.
Peace!
DX Jan '10, at 47
Feb - colon resection - 2/17 nodes
April - liver mets - Stage 4
3 months Folfox chemotherapy
August '10 liver resection and HAI pump
7 months chemo FUDR HAI and Folfiri systemic
NED since August 2010
Last treatment April '11
HAI Pump removed Dec '15

melissadc76
Posts: 12
Joined: Tue Dec 04, 2018 5:03 pm
Facebook Username: melissa.syria

Re: Supporting my husband with a new DX *UPDATE*

Postby melissadc76 » Thu Apr 04, 2019 10:26 pm

Eeeeeeek! I am so happy!
We went to Huntsman for the scan and round 7 of chemo this week. We saw the oncologist the next day (yesterday). He said my husband's tumor has shrunk by half and he is ready for surgery. Now he gets a 4 week break from chemo and surgery consult!!!!

He is operable!

We know we still have a long journey, but so hopeful. My husband holds it all inside, but he wept when the oncologist have him the news. You should have seen the doctor beaming with the good news.
Caregiver to my DH (48 yo)
5 kids (2 mine 21 & 16, 2 ours 11 & 10, 1 adopting 2)
Dx Sigmoid Adenocarcinoma 10/25/2018
No staging yet, told "Inoperable" and "about the size of an orange"
Emerg Colostomy bowel block 10/25/2018
New colostomy surgery 11/5/2018 (new placement of original botched placement?)
CT scans of lungs and liver look "clear"
Huntsman Cancer Institute surgery consult
Tx Plan: Neoadj Chemo FOLFOX 1/10/2019-?
CEA 1.9 (I guess it's not a marker for him).

Gravelyguy
Posts: 229
Joined: Thu Jul 05, 2018 6:03 pm

Re: Supporting my husband with a new DX *UPDATE*

Postby Gravelyguy » Fri Apr 05, 2019 6:15 am

That is so wonderful. A true answer to prayers!

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 clear scans, CEA .9 still NED!
6/11/19 clear scans CEA 1.0

jmn
Posts: 48
Joined: Sat Aug 11, 2018 8:20 pm
Location: New York/Philadelphia

Re: Supporting my husband with a new DX *UPDATE*

Postby jmn » Fri Apr 05, 2019 3:16 pm

Thanks for sharing the good news. While you still have a long journey ahead, it’s important to take time to celebrate the milestones along the way.
DX: CC, 7-9-18 @ age 61, male
Severe anemia (4.5 g/dl), 5-11-18; colonoscopy, 6-29-18
Lap-assisted right hemicolectomy, 7-16-18
G2, moderately differentiated adenocarcinoma in cecum, 4.2 x 3.7 x 0.7 cm
Stage IIB, pT4aN0 (first pathology DX: pT3N0)
0/24 lymph nodes, LVI present, PNI present, surgical margins clear, MSS
CEA: 3.0 (pre-op, 7-10-18); 0.7 (post-op, 8-8-18)
TX: Xeloda (capecitabine) monotherapy, 10-16-18 to 4-21-19
CEA: 4-19, 3.4; 5-19, 3.0; 7-19, 3.0
NED: 5-28-19 :D
Clear colonoscopy, 7-15-19 :D

Punky44
Posts: 360
Joined: Mon Oct 01, 2018 4:29 pm

Re: Supporting my husband with a new DX *UPDATE*

Postby Punky44 » Fri Apr 05, 2019 11:58 pm

Hooray! Great news and good luck with surgery!
Caregiver to my amazing mom (68)
10/1/18 DX with rectal cancer; CEA 17 at diagnosis
MRI/CT/PET puts staging at 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
CEA 4/23: 2.1; 7/24: 1.9
6/28/19 Reversal and port out

Me: 34, first colonoscopy 11/16/18—normal! Come back in 5 years.

brokenwings
Posts: 101
Joined: Mon Jan 07, 2019 1:50 am

Re: Supporting my husband with a new DX *UPDATE*

Postby brokenwings » Mon Apr 08, 2019 10:27 am

melissadc76 wrote:Eeeeeeek! I am so happy!
We went to Huntsman for the scan and round 7 of chemo this week. We saw the oncologist the next day (yesterday). He said my husband's tumor has shrunk by half and he is ready for surgery. Now he gets a 4 week break from chemo and surgery consult!!!!

He is operable!

We know we still have a long journey, but so hopeful. My husband holds it all inside, but he wept when the oncologist have him the news. You should have seen the doctor beaming with the good news.


I read your journey so far and I'm so happy for your husband. I wish him all the best with his surgery.

Hugs,

Paola
DX 2019 Adenocarcinoma Sigmoid colon. PC + ovarian met.
Obstruction. Temporary colostomy. Primary tumour still there.
Folfirinox: 6 cycles
CT Scan/PET Scan: ok for surgery
Surgery (CRS + HIPEC) 04/29: not optimally resectable, surgery cancelled. Right ovary removed.
2nd ptotocol: IP chemo (oxaliplatin) + IV chemo (Folfiri + Avastin).
07/04: exploratory laparoscopy - necrosis of peri mets
4 more cycles
09/11: CT scan
09/12: last exploratory laparoscopy and final decision

melissadc76
Posts: 12
Joined: Tue Dec 04, 2018 5:03 pm
Facebook Username: melissa.syria

Re: Supporting my husband with a new DX *UPDATE*

Postby melissadc76 » Wed Jul 10, 2019 1:30 pm

UPDATE 7/10/2019

My husband had surgery on 6/13/2019. They removed his tumor! After chemo, it had shrunk enough to remove, although there was some worry about whether it was stuck to his spine, bladder. Turns out, they had to remove part of his bladder, part of his intestine, and a segment of his colon with the tumor. During the surgery, they did a colostomy takedown! They gave him a temporary ileolstemy and sent him home with a catheter until his bladder healed.

Yesterday, they removed his staples, removed his catheter, and said he looks great.

Pathology report said they got clean margins on everything. They believe they got all the cancer out. None of his lymph nodes tested positive.

My biggest worry at this point, (besides having the cancer return) is his weight. After surgery, he's lost a lot. He's down to 187 (he's 6''3") and I'm hoping he will start feeling better.

4 more rounds of chemo starting next Friday.

Any tips on gaining weight with an ileostemy? It seems like everything just goes straight through him.
Caregiver to my DH (48 yo)
5 kids (2 mine 21 & 16, 2 ours 11 & 10, 1 adopting 2)
Dx Sigmoid Adenocarcinoma 10/25/2018
No staging yet, told "Inoperable" and "about the size of an orange"
Emerg Colostomy bowel block 10/25/2018
New colostomy surgery 11/5/2018 (new placement of original botched placement?)
CT scans of lungs and liver look "clear"
Huntsman Cancer Institute surgery consult
Tx Plan: Neoadj Chemo FOLFOX 1/10/2019-?
CEA 1.9 (I guess it's not a marker for him).

Punky44
Posts: 360
Joined: Mon Oct 01, 2018 4:29 pm

Re: Supporting my husband with a new DX *UPDATE*

Postby Punky44 » Wed Jul 10, 2019 1:38 pm

Great news! My mom had issues gaining with her ileostomy as well—she tried to do protein supplement drinks like Boost and Ensure whenever possible.
Caregiver to my amazing mom (68)
10/1/18 DX with rectal cancer; CEA 17 at diagnosis
MRI/CT/PET puts staging at 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
CEA 4/23: 2.1; 7/24: 1.9
6/28/19 Reversal and port out

Me: 34, first colonoscopy 11/16/18—normal! Come back in 5 years.

fumaros
Posts: 267
Joined: Sat Jul 02, 2016 10:26 pm
Location: Syracuse, NY
Contact:

Re: Supporting my husband with a new DX *UPDATE*

Postby fumaros » Wed Jul 10, 2019 3:22 pm

Congratulations that is good news. the best part is that they got all of it.
Diagnosed 4/8/16, age 29
Colectomy 4/20/16
Stage III, T4bN1 Tumor 7x6.5x2. Muscinous Adenocarcinoma with SRC features
2/16 lymph nodes
Stage IV, Peri mets 5/2019
CEA 4/14/16 - 16.8
CEA 6/2/16 - 1.9
CEA 6/17/16 - 0.87, 7/16 - 1.33, 12/16 - 1.14, 4/17 - 0.6, 7/17 - 0.5, 10/17 - 0.9, 3/19 -5.8, 4/19 -10
FOLFOX began 6/24/16 - 11/25/16, FOLFIRI - 5/10/19
10 round FOLFOX, 2 round 5-FU & Leucovorin, 1 round FOLFIRI
MRI & CT 8/16 - NED, CT 12/16 - 10/17 - NED


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