Please! Read me...

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NHMike
Posts: 1687
Joined: Fri Jul 21, 2017 3:43 am

Re: Please! Read me...

Postby NHMike » Sat Jun 02, 2018 7:21 pm

Mohrfamily wrote:My husband surgery for his port placement to the left side of his chest went well. Will he ever feel normal with it? He can't rest his arm on the window when driving for more than 10 minutes he's just sent my heart racing talking about pain in his (left) arm that had me thinking heart attack. Can someone shed a little light on the future as far as this goes?


I have my port on the right side and it was painful with some movements in my shoulders and arms. The pain level dropped in 3 days and I didn't really notice it after a week.

I'm generally careful and there are strength-training exercises that I avoid because of where it is. I avoid hugging people as well as it may press on the port on on my illeostomy. The doctor should have talked to him about how it would feel pain-wise and how it would feel before the surgery.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda 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; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal

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Robino1
Posts: 462
Joined: Fri Aug 11, 2017 12:09 pm
Facebook Username: Robin.lawthers
Location: Florida

Re: Please! Read me...

Postby Robino1 » Sat Jun 02, 2018 9:05 pm

The pain will subside. The doctor should have told him not to raise his arms for a few days. Not sure how long it was before I could. It took me a while to feel ok with the port. Sideways hugs, patting it clean when showering... Now it is like it has always been there. I give full hugs, no hesitation when showering or putting on lotion.

I couldn't sleep on my right side for a couple of weeks (port is on my left). Now it's no problem. :)

Give it time. If it hurts, stop doing what it was that makes it hurt. ;) In time it will all be ok and no restrictions After it heals and settles in.
At 54 2014 1st colonoscopy colon cancer detect
Colon resect margins clear. No chemo Stage II
2017
Distend abd, pain in intestines.
CT scan seeding & Ascites
Lap diag - cancer on the omentum
CEA 217; 219
FOLFOX started 6/17
CEA 202
8/29/17 CT melting of tumor.
Latest CT scan shows 2 new tumors and return of ascites.
CEA: (2017)9/30 -109; 10/12 -99.1; 11/4 -90.7; 11/30 -70.7; 12/14 -83.4; (2018)1/4 -73.3; 2/1-84.2; 89.2; 89.8; 88.5; 81.8: 93.5; 107; 119
BRAF V600e

some808guy
Posts: 10
Joined: Thu Oct 01, 2015 2:38 am

Re: Please! Read me...

Postby some808guy » Sun Jun 03, 2018 1:05 am

Mohrfamily wrote:My husband surgery for his port placement to the left side of his chest went well. Will he ever feel normal with it? He can't rest his arm on the window when driving for more than 10 minutes he's just sent my heart racing talking about pain in his (left) arm that had me thinking heart attack. Can someone shed a little light on the future as far as this goes?


Palliative is just a word. Do not let that deter you from getting the best care you can. I was actually able to use that "palliative" label to be able to get drugs off label and not standard of care treatments.

I had some pain on the port but it only for a week or so. I think it is more of getting used to having the port there. I have my port for so long now, I barely notice it's there.

Mohrfamily
Posts: 36
Joined: Tue May 22, 2018 4:04 pm

Re: Please! Read me...

Postby Mohrfamily » Mon Jun 04, 2018 10:13 am

Has anyone heard of Smitha Krishmnaruthi? Out of Cleveland clinic?
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

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O Stoma Mia
Posts: 1426
Joined: Sat Jun 22, 2013 6:29 am
Location: Traveling abroad:

Re: Please! Read me...

Postby O Stoma Mia » Mon Jun 04, 2018 1:47 pm

Mohrfamily wrote:Has anyone heard of Smitha Krishmnaruthi? Out of Cleveland clinic?

Are you sure you have the name spelled correctly?

There's a Dr. Smitha Krishnamurthi (oncologist) who has co-authored many articles in various areas of oncology:
https://scholar.google.com/scholar?start=10&q=krishnamurthi+smitha&hl=en&as_sdt=0,5

Here is a video about her:
Dr. Smitha S. Krishnamurthi (VIDEO)

Mohrfamily
Posts: 36
Joined: Tue May 22, 2018 4:04 pm

Re: Please! Read me...

Postby Mohrfamily » Thu Jun 07, 2018 4:44 am

We started a t shirt campaign and its gone really well sold 60% of our goal. If anyone wants to do a campaign I recommend www.customink.com because its also like a gofundme.

Does anyone know of good financial support programs? I looked at HOPE but they are closed and the name escapes me now but it provided like a secondary insurance for cancer? Anyway colon cancer and liver mets wasn't on the qualifying list.
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

Mohrfamily
Posts: 36
Joined: Tue May 22, 2018 4:04 pm

Re: Please! Read me...

Postby Mohrfamily » Thu Jun 07, 2018 4:46 am

Mohrfamily wrote:We started a t shirt campaign and its gone really well sold 60% of our goal. If anyone wants to do a campaign I recommend http://www.customink.com because its also like a gofundme.


Not looking for anyone to buy from us just a tool for others to use FYI
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

jortego128
Posts: 284
Joined: Sat Aug 15, 2015 7:47 am

Re: Please! Read me...

Postby jortego128 » Mon Jun 11, 2018 2:25 pm

Get second opinions on the resectability of the liver tumors, inquire about SIRT (Selective Internal Radiation Therapy) in conjunction with chemo. SIRT has a better chance (statisically) of shrinking liver tumors to resectability than just systemic chemo alone.
DM 57 yrs old dx 6/8/15 T:4a N:1b M:1
KRAS G12D and TP53 C242fs mutations
Poorly Differentiated, Prominent Signet Ring Component(~50%)
Microsatellite Stable, 3 of (13)lymph nodes positive
15 Liver mets, largest 3.2 cm
Prim. Resection, Right Hemicolectomy 6/21/15
Start Chemo 7/20/15
2 rounds FOLFOX, 1 round FOLFOX +Avastin
CT 8/28/15, met growth, largest 4.5cm
4 rounds FOLFOX+Avastin
CT 11/06/15 mets stable, lungs clear
Begin FOLFIRI+Avastin 11/17/15, Stop chemo 1/26/16
Entered Paradise 3/11/2016

Mohrfamily
Posts: 36
Joined: Tue May 22, 2018 4:04 pm

Re: Please! Read me...

Postby Mohrfamily » Mon Jun 11, 2018 6:57 pm

jortego128 wrote:Get second opinions on the resectability of the liver tumors, inquire about SIRT (Selective Internal Radiation Therapy) in conjunction with chemo. SIRT has a better chance (statisically) of shrinking liver tumors to resectability than just systemic chemo alone.


We saw Dr. Smitha K ... From Cleveland clinic today. There's a lot to deal with on his liver. I think are changing him from adding avastin to another aggressive method good for liver targeting. The name escapes me now. She pushed on his abdomen today and he said it didn't hurt as much as day a month or so ago and said that was a good sign. She is having us meet a liver surgeon to be able to consult when new scans are done and is keeping in the loop with our local oncologist (still affiliated with Cleveland). She talked also about an internal pump for chemo directly to the liver also. Will have to mention SIRT right now he's inoperable with the amounts of disease on the liver so we are going through the chemo morons till the next scans are done.
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


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