Another new diagnosis

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tminor5
Posts: 2
Joined: Wed Jun 13, 2018 11:46 am

Another new diagnosis

Postby tminor5 » Wed Jun 13, 2018 12:27 pm

I am here because my husband was the one diagnosed. His story is he had no family history, no tell tale signs that something was wrong. The week of May 22nd he started not feeling well. His stomach was bothering him. No blood in stool or anything. On Friday May 25th he calls me at lunch telling me how bad he is feeling. This is a man who doesn't complain about anything and felt bad even calling. I asked symptoms, this is when he tells me he hasn't pooped or farted since Tuesday. Im like ok you need to come back (he has an hour commute to work, 30 min to our dr office). He finally is able to leave work early and walks into our clinic. Our main dr wasn't there that day and he had to see the on call dr. He did run some blood tests, but he wasn't too concerned and suggested he try a liquid diet and see if it clears his no bathroom problem. The dr did say if he started to feel worse go to the ER.

He drove home an by the time he got here he was clammy looking, sweating, and shaking. I'm like ok we are going to the ER. We get there and after an hour and a half (which is long where we are) and people coming in after us going back first. I went up and asked if his pain is getting worse do you want to know? He was back in the ER within 15 min then. I tell them I'm pretty sure he has a bowel obstruction. Of course at the age of 46 they were like, probably not. Im like my dad and my BIL went through bowel obstructions last year I know the symptoms. They tested to see if he was impacted. He really wasn't so they decided to do a CT scan. They found an abscess and infection. They also mentioned diverticulitis. We didn't get to see the surgeon until Saturday, the surgeon was wary to just go in and do surgery. They did put an NG tube in on Saturday. They scheduled a colonoscopy for the next day, Sunday May 27. They did confirm the abscess and infection, but also found a growth. They tried to put a mesh something in to help him be able to wait for confirmation of cancer, and Im sure they wanted to do Chemo first. Needless to say they couldn't put it in. So surgery was scheduled for Sunday night May 27. They took about 18" of colon, 33 lymphs (only found cancer in 1), and had to do an ostomy because of the abscess and infection, they couldn't reconnect. It was ugly in there. His colon was rolled and things were laying on each other. He did have some perforations and tears that the surgeon fixed. He did look around and didn't see that the cancer had not moved near by. We found out the short term disability listed on my husbands benefits (I stay home and babysit on the side) are only for work related stuff. He was in the hospital 8 days. So no short term disability. The dr let him go back light duty (his work is wonderful about this) this past Monday.

Saw his Oncologist on Wed June 6. He was stage 3. He looked at the CT scan and didn't see where the cancer had spread anywhere. He is pretty sure they removed it all. He talked with the radiation person about my husbands scans and they believe he is one that does not need radiation. They will have us talk to the radiation person later so we can decide for ourselves. They went ahead and put his Chemo port in last Friday June 8th, so he can limit his days off, that aren't needed. He starts Chemo Monday June 25th. They also told him if he does radiation the ostomy would be permanent.

I don't know what other information to put. All I know is that I keep thinking if he hadn't gone in because that abscess and infection we still wouldn't know he had cancer. I also know what caused the abscess and stuff. He was trying to be healthier and we were taking a Mexican Root thing that helps turn fat into energy. When you take it you have to supplement potassium. My husband HATES bananas so we came up with smoothies. It had whole Kiwi, strawberries, and I added flax seed (there was other stuff also, this is just the seeded stuff). I know they say seeds don't inflame diverticulitis, but you should've seen what just rinsing out the blender in my sink did to the drain. So Im sure this is what inflamed him. He'd only been on this 35 days, when this happened. We're just lucky we finally found out.

Trisha (husband Roger)

hawkowl
Posts: 100
Joined: Sun Dec 14, 2014 5:29 am
Location: MN/FL

Re: Another new diagnosis

Postby hawkowl » Wed Jun 13, 2018 1:47 pm

What a frightening experience! I am glad to hear that they weee able to remove the entire mass and that they only found cancer in one lymph node. It is terrifying to get a new cancer diagnosis, but you will find many stories to give you hope (I had cancer in at least 5 lymph nodes and that was more than 3 years ago). This forum is a great place to get advice and information from some very knowledgeable people.
Dx 12/2014 T3N2MX (iliac nodes) low rectal
12/2014-4/2015: FOLFOX (8 cycles)
4/2015-6/2015: 28 cycles of chemoradiation with xeloda
8/2015: Robotic APR with iliac node dissection; path showed ypT0,ypN0 (complete pathological response).
11/2015 scans clear, CEA 2.1
11/2015 parastomal hernia repair
3/2016 CEA 1.7
10/2017 CEA remains in normal range (1.4), scans stable.
6/2018 CEA still normal.

Totally disabled due to oxaliplatin induced neuropathy and dysautonomia

tminor5
Posts: 2
Joined: Wed Jun 13, 2018 11:46 am

Re: Another new diagnosis

Postby tminor5 » Wed Jun 13, 2018 2:33 pm

So I just got signed up for the portal with our oncologist. This is what it says for the chemo treatment:

NCCN_COL2: Fluorouracil IVP(400)D1-Fluorouracil CI(1200)D1-2-Leucovorin(400)D1-OXALIplatin(85)D1 Q14D (mFOLFOX6) v2.1

It does say its for eight cycles. But I really have no idea what any of that is. But it looks like it may be the same regimen as most people I see listed?

Trisha

crikklekay
Posts: 26
Joined: Thu Feb 15, 2018 9:47 am
Location: Richmond, VA

Re: Another new diagnosis

Postby crikklekay » Wed Jun 13, 2018 4:27 pm

Hello!

Our experiences are so close we could sisters. My husband had the same issues, but our doctor insisted he was just constipated so we didn't wind up in the ER until he was vomiting and couldn't keep liquids down. We were seen immediately, but I'm told if you can't walk into the ER under your own power you apparently go to the front of the line. No infection or diverticulitis, just the tumor blocking his colon for at least a week. It's great they only found cancer in one node! I can't say anything regarding radiation because it was never discussed as an option for us. His ostomy has given him trouble so having a wound care nurse department to call for questions has been a lifesaver; we even made a consultation appointment once.

The protocol you listed is pretty standard, but I guess since he had very little node involvement is why they're doing 8 rounds instead of 12. My husband had 6 nodes involved so he's doing the full 12 rounds, we just finished treatment #8 last week. Fluorouracil is the chemotherapy, leucovorin is used to help the chemotherapy work (or at least that's how it was explained to us) and oxaliplatin is another chemotherapy drug that contains platinum. Our experience is that he'll start the treatment at an infusion center which takes about 3 hours, then he'll go home with a pump that has the fluorouracil in it which slowly pumps into his system over 48 hours. After the 48 hours he goes back, they remove the pump, and he gets some hydration to help him recover. Rinse and repeat every other week for your assigned number of cycles. He goes in on Tuesday then comes back on Thursday for pump removal.

I hope that helps, this is a community full of experience so reach out with any questions or concerns and someone should be able to help! Good luck to both you and your husband!!
Caring for DH John, 41
DX: Colon Cancer, Sigmoid colon
Tumor type: Adenocarcinoma
Tumor grade: G2, Moderately differentiated with invasion of visceral peritoneum
Stage IIIC
Positive lymph nodes: 6 out of 22 sampled.
Ostomy surgery: Colostomy
Chemotherapy: FOLFOX (6)
12/17 ER and emergency surgery
2/18 Hospital with MSSA infected port, PICC line inserted
3/18 Hospital with CDIFF
Chest and Abdominal Scans Clear So Far

DarknessEmbraced
Posts: 3016
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: Another new diagnosis

Postby DarknessEmbraced » Tue Jun 19, 2018 8:34 am

What a scary experience for both you and your husband!*hugs* I'm sorry he's going through so much!*hugs* I'm glad his cancer was found. I hope his recovery and chemo go well!*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

NHMike
Posts: 1362
Joined: Fri Jul 21, 2017 3:43 am

Re: Another new diagnosis

Postby NHMike » Tue Jun 19, 2018 9:30 am

tminor5 wrote:So I just got signed up for the portal with our oncologist. This is what it says for the chemo treatment:

NCCN_COL2: Fluorouracil IVP(400)D1-Fluorouracil CI(1200)D1-2-Leucovorin(400)D1-OXALIplatin(85)D1 Q14D (mFOLFOX6) v2.1

It does say its for eight cycles. But I really have no idea what any of that is. But it looks like it may be the same regimen as most people I see listed?

Trisha


Most people in the past year had either 12 rounds of FOLFOX with two weeks per cycle for six months or 8 rounds of CAPOX (or XELOX) with three weeks per cycle, again for six months. FOLFOX has the infused form of 5FU while CAPOX/XELOX has the pill form. With FOLFOX, you go to the hospital or an infusion center and then bring home a pump which you use for two days or a little less. With CAPOX, you go to the hospital the first day of the cycle for an infusion and then take XELODA for two weeks (5FU in pill form).

There are newer protocols with less chemo.
6/23/17: ER rectal bleeding; Colonoscopy
7/13: Stage 3B rectal. T3N1bM0. 5.2 x 4.5 x 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/31-9/8: Xeloda 3,400 mg/day+radiation
7/5: CEA 2.7; 8/16: 1.9; 9/8: 1.8; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8
MSS, KRAS G12D
10/6: 2.7 x 2.2 x 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/30: LAR, Temp Ileostomy, Path Complete Response
12/20: Started CapeOx


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