Please pass your positivity/wisdom today

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Mohrfamily
Posts: 43
Joined: Tue May 22, 2018 4:04 pm

Please pass your positivity/wisdom today

Postby Mohrfamily » Sat Jun 02, 2018 9:16 am

Per the PET scan, numerous peripheral hypermetabolic hepatic lesions are seen diffusely throughout the liver. Maximal SUV value of the liver is 14.3 The region of hypermetabolic uptake of the midportion of the sigmoid colon identified. The maximal SUV value for the sigmoid lesion is 12.8 There is also region of subtle hypermetabolism of a lymph node near the sigmoid colon. Maximal SUV value of the suspected adjacent lymph node is 3.8. No soft tissue wall mass or fluid collection identified and no bony lesion seen.
Per the colonoscopy, a 5mm polyp was found in the sigmoid colon, sessile, removed with hot snare. Resection/retrieval complete. 4mm polyp found in recto-sigmoid colon, sessile, filtration to ablate by monopolar prove was successful. An infilltrative non-obstructing large mass was found at the splenic flexure. The mass was partially circumferential, measured 4cm in length, oozing present biopsies taken.

DH has begun FolFox (and hone treatment Fu or F5?)chemo 46 hours every 2 weeks. It will get worse before it gets better but he did well the first round slight constipation and definite cold sensitivity.
DH dx officially stage IV with liver mets
Colonoscopy/endoscopy/port place 5/29
4cm long mass in splenic flexure
1st round FolFox 5/30
08/2018 new CT no new lesions, clear lungs, slight decrease in colon.

stu
Posts: 875
Joined: Sat Aug 17, 2013 5:46 pm

Re: Please pass your positivity/wisdom today

Postby stu » Sat Jun 02, 2018 2:14 pm

Well done to you husband getting through round one . Now the chemo can go like loaded arrows to knock the tumours out .
Reigning in the spread has begun . I wish him every success .
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 .

SteveNZ
Posts: 142
Joined: Tue Apr 24, 2018 4:21 pm
Location: New Zealnd

Re: Please pass your positivity/wisdom today

Postby SteveNZ » Sat Jun 02, 2018 8:16 pm

Thinking of you folk.
You are going so well... Bless you heaps
Steve
Aged 56 - I feel really young...
Colo-Rectal Cancer T2 N1 M0
March 2018 - Diagnosis
April-May 2018 Radiation+Chemo then a TIA (Minor Stroke). - Stopped Chemo.
June 2018 - Sitting it out before operation. ....Pretty Miserable- emotions gone weird....?!
*Decided to live to 100 as I will get a telegram from Her Majesty the Queen when 100yrs old. I so, so want one.
Am a Salvation Army chap so I complete 'knee drill' (prayer) to the Commander in Chief often. For myself personally this helps me through.

RulaLenska
Posts: 21
Joined: Fri May 04, 2018 8:13 pm

Re: Please pass your positivity/wisdom today

Postby RulaLenska » Sat Jun 02, 2018 9:07 pm

Wishing your family the best healing possible for your loved one.
Dx 8/16 IV stage with mets to lungs liver adrenals
KRAS wt MSS CEA over 400
2 x folfori caused refractory diarrhea but dropped CEA to 200
Switched to folfox stopped after 10 due to neuropathy
Avastin leucorvorin 5fu dropped after 11 due to hfs
Chemo break to travel.
Nov. 2017 emergency sleeve colectomy of primary tumor.
Vectibix irinotecan
PET scan shows no lung or adrenal tumors
5/2 Portal Vein Embolisation in preparation for liver resection.
6/12 extended right resection removing 60%.

Mohrfamily
Posts: 43
Joined: Tue May 22, 2018 4:04 pm

Re: Please pass your positivity/wisdom today

Postby Mohrfamily » Tue Jul 03, 2018 11:55 am

Well his 3rd round of chemo happened on 6/27 FolFox but minus avastin and enter vectibix.

He began getting the rash associated in its side effects. When I arrived for the last hour of chemo he mentioned (nonchalantly) that his liver numbers were down. I ask which ones specifically and he didn't remember or write them down but you take that knowledge with his decrease in abdominal pain and its a small victory for a small pray-er, what do i mean by hyphenating well. Our4 year old went to her first year of bible school just 1 week of it. While other preschoolers prayed for toys etc, when it got to her she prayed for her daddy. She doesn't know the word cancer or what it means/could mean and frankly we don't know how to talk about it all she knows is daddy has booboos it was the sweetest thing.

We revel in the small victories in our house. Next scan is set for August 14th wish us luck that our sweetie girls prayers continue to be answered.
DH dx officially stage IV with liver mets
Colonoscopy/endoscopy/port place 5/29
4cm long mass in splenic flexure
1st round FolFox 5/30
08/2018 new CT no new lesions, clear lungs, slight decrease in colon.

Capri
Posts: 68
Joined: Thu Apr 19, 2018 5:59 pm

Re: Please pass your positivity/wisdom today

Postby Capri » Thu Jul 05, 2018 6:23 pm

May continued good reports come for your husband! Bless you both, and your little daughter. How sweet!
Mom to son 46 yo at Dx (2017)
9/17 rectal bleeding
12/17 colonoscopy sigmoid tumor; CT & MRI chest, abd,& pelvis clear; CEA normal
1/18 Robotic resection, Path: adenocarcinoma, Stg. IIIA T3 N1 MX, mod. differentiated, margins clear
2/18 Port placed; 2/26/18 Begins FOLFOX
6/18 On Early surveillance CT 2 liver hemangiomas, PET scan-nothing "lit up"
Neuropathy has started.
7/30/18 Completed 12 cycles of FOLFOX.
Port removed October
11/2/18 Clean colonoscopy

Rikimaroo
Posts: 151
Joined: Tue Dec 20, 2016 8:48 pm

Re: Please pass your positivity/wisdom today

Postby Rikimaroo » Fri Jul 06, 2018 1:59 pm

i had bad constipation on FOLFOX. Get stool softener it helps alot. Get it sooner then later, because I waited to long and got an anal fissure which hurt no matter what thickness your poop is.
Diagnosed at 38 y/o male, 3 kids 7,9,14 - Now 39.
RC T3N1M0
Chemo Rad, CCR - W&W 5/2017
Local Recurrence, discuss options 11/26/2017
CT Scan 11/2017 Liver Met 5.5cm Stable, Stage IV
Port Scheduled for 12/15/2017, folfox/oxapalatin + avastin starts on the 12/20/2017
Blood Clot in Neck 1/16/2018, stop avastin, continue FolFox
TME/Liver Resect 4/3/2018
Biopsy Results 0/8 Lymph nodes clear, margins not clear, CEA now .8,
Chemo Finish 8/15/2018
Reversal October 17th 2018

Gravelyguy
Posts: 57
Joined: Thu Jul 05, 2018 6:03 pm

Re: Please pass your positivity/wisdom today

Postby Gravelyguy » Fri Jul 06, 2018 8:07 pm

Vectibix really did a number on my liver Mets. One was dead completely when they resected it. It also did a number on me. The rash is no joke! Praying for continued good response.

Dave
6/17 dx mCRC t3n1m1 very low rectal tumor 2 very small liver Mets

6/17 begin 4 rounds Folfox w/Vectibix
9/17 short course radiation
10/17 rectal and liver resection
11/17-3/18 8 rounds Folfox
6/18 NED!! Takedown
8/28/18 still NED! CEA .8 new low for me
10/18/18 colonoscopy clear

DarknessEmbraced
Posts: 3155
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: Please pass your positivity/wisdom today

Postby DarknessEmbraced » Mon Jul 09, 2018 10:20 am

I'm sorry you and your husband are going through this!*hugs* I hope his chemo goes 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

Mohrfamily
Posts: 43
Joined: Tue May 22, 2018 4:04 pm

Re: Please pass your positivity/wisdom today

Postby Mohrfamily » Wed Jul 11, 2018 10:18 am

4th dose they had to take a break from vectibix his rash was just to bad. Today is his 32nd birthday and chemo day and poor guy looks like he's a teen going through puberty acne. He's been feeling ok we got a port pillow seat belt protector he likes it more than he hates it I guess. Our baby girl has developed a daddy-dar when he has any pain or discomfort she is almost immediately right there in his lap cuddling him or giving him kissing and even instructing me what to do once after we all went to bed. She came in laid with him after his head rash was really bugging him and she told me to rub his arm as she did the other.

Our daughter is his angel on earth.
DH dx officially stage IV with liver mets
Colonoscopy/endoscopy/port place 5/29
4cm long mass in splenic flexure
1st round FolFox 5/30
08/2018 new CT no new lesions, clear lungs, slight decrease in colon.

Gravelyguy
Posts: 57
Joined: Thu Jul 05, 2018 6:03 pm

Re: Please pass your positivity/wisdom today

Postby Gravelyguy » Wed Jul 11, 2018 2:23 pm

What a sweet girl. Like I said earlier. That rash is no joke. It was really hard to continue but I made it through and it really did shrink my liver Mets. He can do it! The rash goes away and becomes only a memory pretty quickly.

Dave
6/17 dx mCRC t3n1m1 very low rectal tumor 2 very small liver Mets

6/17 begin 4 rounds Folfox w/Vectibix
9/17 short course radiation
10/17 rectal and liver resection
11/17-3/18 8 rounds Folfox
6/18 NED!! Takedown
8/28/18 still NED! CEA .8 new low for me
10/18/18 colonoscopy clear

Mohrfamily
Posts: 43
Joined: Tue May 22, 2018 4:04 pm

Re: Please pass your positivity/wisdom today

Postby Mohrfamily » Tue Jul 17, 2018 10:28 am

They aren't sure if they will let DH get his next dose of chemo that would include Vectibix. His rash is visibly getting better its not 100% and he says it all hurts some but he did said it was feeling better. His white blood cells dipped a little low like no more than 5 points across the whole white count board i.e. neutrophils. So I can see the precaution for his 4th round but if his levels are ok why wouldn't they allow him to take the drug? He's said he doesn't feel bad enough to not give it his best shot. We all know what's at stake here good and bad and 15% better effectiveness is what we all want.

Trying to be patient but I lack in that area when it comes to this. We are hoping for good scans in 4 weeks. And hope Vectibix can make a come back!
DH dx officially stage IV with liver mets
Colonoscopy/endoscopy/port place 5/29
4cm long mass in splenic flexure
1st round FolFox 5/30
08/2018 new CT no new lesions, clear lungs, slight decrease in colon.

Gravelyguy
Posts: 57
Joined: Thu Jul 05, 2018 6:03 pm

Re: Please pass your positivity/wisdom today

Postby Gravelyguy » Tue Jul 17, 2018 3:32 pm

I had a grade 3 rash across my face and chest. I also had mouth sores something fierce. My Onc never talked about not continuing. I did only do 4 rounds with it before surgery. My blood work also stayed pretty good throughout the rounds so that might be impacting the decisions.

Praying for good results with or without the Vectibix!

Dave
6/17 dx mCRC t3n1m1 very low rectal tumor 2 very small liver Mets

6/17 begin 4 rounds Folfox w/Vectibix
9/17 short course radiation
10/17 rectal and liver resection
11/17-3/18 8 rounds Folfox
6/18 NED!! Takedown
8/28/18 still NED! CEA .8 new low for me
10/18/18 colonoscopy clear

Mohrfamily
Posts: 43
Joined: Tue May 22, 2018 4:04 pm

Re: Please pass your positivity/wisdom today

Postby Mohrfamily » Wed Jul 18, 2018 7:28 am

That's what I don't understand my hubby told them he wanted to continue yeah the rash sucks but not enough to give up a good/better drug. I get they don't want an infection and the white blood cells are crucial but they only spiked VERY littke
DH dx officially stage IV with liver mets
Colonoscopy/endoscopy/port place 5/29
4cm long mass in splenic flexure
1st round FolFox 5/30
08/2018 new CT no new lesions, clear lungs, slight decrease in colon.

Mohrfamily
Posts: 43
Joined: Tue May 22, 2018 4:04 pm

Re: Please pass your positivity/wisdom today

Postby Mohrfamily » Tue Jul 24, 2018 6:28 pm

Back on Vectibix tomorrow!

His liver numbers AST, ALT, Alkaline Phosphate are continuing their decent his AP started at 355 and is down to 151... And a normal high range is 120. He was put on a steroid pack which gave him headaches so he took Tylenol as the doctors suggested which gave him liver pain so they prescribed oxycodeine, which with all those possible side effects he's afraid to take.

While getting chemo yesterday he had an allergic reaction, he went really pale, heart beat went up and he broke out in hives. It was either the oxi or leuco, he couldn't remember and I had to work. But he is back on vectibix after taking a 2 week break!

Now I am on double duty worry, next round of chemo our son (6) will undergo a tonsillectomy and adenectony (adenoids) the day after chemo while DH still has his pump on he had his tonsils out as a kid and I know its a common procedure but still, stressful to say the least. Our son is just like daddy, although, I think repeating dads tonsillectomy is a bit much let alone the future of possible cancer DX
Last edited by Mohrfamily on Thu Jul 26, 2018 4:52 am, edited 1 time in total.
DH dx officially stage IV with liver mets
Colonoscopy/endoscopy/port place 5/29
4cm long mass in splenic flexure
1st round FolFox 5/30
08/2018 new CT no new lesions, clear lungs, slight decrease in colon.


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