SWF, so many uncertainties NOW!!!!

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NHMike
Posts: 2555
Joined: Fri Jul 21, 2017 3:43 am

Re: SWF, so many uncertainties NOW!!!!

Postby NHMike » Thu Jan 04, 2018 11:38 am

Eleda wrote:Thanks Beth, I posted a reply but in the wrong place
I'll rectify it later
Same as I replied to u Mac lol I'm technology retarded sorry lol
NHMike, I tried to send u a message and I dump what I've done :roll:

Mike I've been reading up on the MSS MSI KRAS AND BRAF, TO THE POINT I'M TOTALLY CONFUSED NOW, as its adding combinations of mutations with different outcome,,,
Would u mind breaking down the main mutations and prognosis or likely treatment for the main types that I can expect to come back from hispatology

This was the last one u read and and I've a banging headace as it is from the Zelda


https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3269820/


Our bodies have a genetic repair system DNA Mismatch Repair and it's impaired with certain genetic markers. When you have the problem, it's labeled as MSI. When it's normal, it's labeled as MSS. MSI can be an indicator for Lynch Syndrome.

KRAS and BRAF are gene mutations.

Image

KRAS is a gene that provides the code for making a protein, KRAS, which is involved primarily in controlling cell division. This protein is part of the MAP kinase signaling cascade (RAS/RAF/MEK/ERK) that relays chemical signals from outside the cell to the cell's nucleus and is primarily involved in controlling cell division. KRAS is an enzyme (a GTPase) that converts a molecule called GTP into GDP. When KRAS is attached (bound) to GDP, it's in its "off" position and can't send signals to the nucleus. But when a GTP molecule arrives and binds to KRAS, KRAS is activated and sends its signal, and then it converts the GTP into GDP and returns to the "off" position.

When mutated, KRAS can act as an oncogene, causing normal cells to become cancerous. The mutations can shift the KRAS protein into the "on" position all the time. KRAS mutations are common in pancreatic, lung and colorectal cancers. These KRAS mutations are said to be somatic, because instead of coming from a parent and being present in every cell (hereditary), they are acquired during the course of a person's life and are found only in cells that become cancerous.

Tumor mutation profiling performed clinically at the MGH Cancer Center has identified KRAS mutations across a broad-spectrum of cancer types. The highest incidence of KRAS mutations have been found in pancreatic cancer (70%), colon cancer (30%), lung cancer (25%), cholangiocarcinoma (15-20%), acute myeloid leukemia (15-20%) and endometrial cancer (15-20%). Across the other major tumor types, KRAS mutations have been found in less than 10% of cases that have been tested.


https://targetedcancercare.massgeneral. ... D-(c-35G-A).aspx

There are a lot of different mutations possible in KRAS. There are gene mutations possible in the other parts of that diagram as well and those are different gene mutations. I believe that most with CRC KRAS mutations are MSS. I have KRAS G12D which is the most common CRC gene mutation. KRAS is the most common CRC gene that mutates.

There are some known aggressive gene mutations with worse potential outcomes and two of them are KRAS G12V and BRAF V600E. There are databases at Mass General Hospital and the MyCancerGenome.org where you can look at descriptions of Gene Mutations https://www.mycancergenome.org/content/ ... r/kras/34/

I don't think that it's worthwhile reading through potential gene mutations, though, unless you've had the testing to determine exactly what you have as it's a lot of worrying and you likely only have one out of potentially hundreds of mutations. Some people do have multiple mutations though but, from what I've seen, that's pretty rare. The vast majority don't get comprehensive Genomic testing though. Most get the standard treatments which don't really look at what you have exactly.

If you have more detailed or specific questions, I can try to answer them but I'm not an expert in this area - just someone that's done a lot of reading and I do get things wrong. My son does understand this stuff far better than I do but I don't like to pepper him with questions that he has to research. He's helped me with a lot of my understanding though, as he can interpret papers for me.
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; 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, 2/12 1.2
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
2/19: Clean CT

Eleda
Posts: 328
Joined: Thu Dec 28, 2017 2:28 am
Facebook Username: adele Morgan
Location: Ireland

Re: SWF, so many uncertainties NOW!!!!

Postby Eleda » Thu Jan 04, 2018 12:07 pm

Thanks so much Mike, I'll have a read over it later, as, I'm waiting for radiation atm
Asked on my CEA level and at Colonoscopy, it was 4.4 so don't think it's going to be a marker I can go from
It's like getting blood from a stone as to get ur own info from them lol
Thanks
Adele
SWF, 47
Mom to 3 sons 6/8/12
Dec4th 2017 colonoscopy for minor intermittent rectal bleeding during Summer
CEA 4.4
DX T3 L3C M0 2.5/3 cm above AV.
JAN 3RD started 1650mg Zelda 2xday, with 28 radiation
Did tagamet 800mg daily and 75mg IV VIT C WEEKLY UNTIL SURGERY and
Tumor reduce by 80% 1 LN still remaining
TATME May10th, temp illeostomy
10/07/2018 CEA 3
MMR INTACT
Began FOLFOX July 10th
24/08/2018 Allergic reaction so next infusion lucovorin and 5fu
CEA 4
Second attempt with oxi aug 12th

Eleda
Posts: 328
Joined: Thu Dec 28, 2017 2:28 am
Facebook Username: adele Morgan
Location: Ireland

Re: SWF, so many uncertainties NOW!!!!

Postby Eleda » Thu Jan 04, 2018 1:11 pm

Mac, thanks for ur reply
I couldn't find a forum that suited me until I found this one
It's very informative and honest, and good to find someone from the mother land to compare treatments and protocol
Glad to see u doing so well
It amazes me the age catorogy here is so Young
So much for old peps cancer
I'm only 2 days now and so far only dehydrated and banging headache
So fingers crossed it will be a decent ride
Adele
SWF, 47
Mom to 3 sons 6/8/12
Dec4th 2017 colonoscopy for minor intermittent rectal bleeding during Summer
CEA 4.4
DX T3 L3C M0 2.5/3 cm above AV.
JAN 3RD started 1650mg Zelda 2xday, with 28 radiation
Did tagamet 800mg daily and 75mg IV VIT C WEEKLY UNTIL SURGERY and
Tumor reduce by 80% 1 LN still remaining
TATME May10th, temp illeostomy
10/07/2018 CEA 3
MMR INTACT
Began FOLFOX July 10th
24/08/2018 Allergic reaction so next infusion lucovorin and 5fu
CEA 4
Second attempt with oxi aug 12th

NHMike
Posts: 2555
Joined: Fri Jul 21, 2017 3:43 am

Re: SWF, so many uncertainties NOW!!!!

Postby NHMike » Thu Jan 04, 2018 1:44 pm

Eleda wrote:Thanks so much Mike, I'll have a read over it later, as, I'm waiting for radiation atm
Asked on my CEA level and at Colonoscopy, it was 4.4 so don't think it's going to be a marker I can go from
It's like getting blood from a stone as to get ur own info from them lol
Thanks
Adele


There's been a big push to Electronic Medical Records in the US and your biggest hospitals generally have it because they have the size and scale to pay for the IT hardware and software. I can go into the hospital portals and look at test results myself unless the doctor embargoes them. Sometimes they do embargo them until you meet with them in a doctors visit so that you don't freak out over a number without an explanation. My portal gives you test results and will give you a history of results, in tabular form or as a chart if you want.
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; 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, 2/12 1.2
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
2/19: Clean CT

Eleda
Posts: 328
Joined: Thu Dec 28, 2017 2:28 am
Facebook Username: adele Morgan
Location: Ireland

Re: SWF, so many uncertainties NOW!!!!

Postby Eleda » Thu Jan 04, 2018 2:05 pm

That's brilliant,,
I'd love if I could access all my reports!!!
Then again lol
I'd never sleep at all then
Wouldn't b viable here, costwise they have it between hospitals as I attend 2 different,,, my surgeon and oncology is at one and radiation at a different one and their all linked for reports,
Ireland is still behind technology wise lol
We still have no broadband in areas lol
Small island syndrome lol
SWF, 47
Mom to 3 sons 6/8/12
Dec4th 2017 colonoscopy for minor intermittent rectal bleeding during Summer
CEA 4.4
DX T3 L3C M0 2.5/3 cm above AV.
JAN 3RD started 1650mg Zelda 2xday, with 28 radiation
Did tagamet 800mg daily and 75mg IV VIT C WEEKLY UNTIL SURGERY and
Tumor reduce by 80% 1 LN still remaining
TATME May10th, temp illeostomy
10/07/2018 CEA 3
MMR INTACT
Began FOLFOX July 10th
24/08/2018 Allergic reaction so next infusion lucovorin and 5fu
CEA 4
Second attempt with oxi aug 12th


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