Just got the call, tested positive for Lynch.

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BeansMama
Posts: 959
Joined: Thu Jan 28, 2016 1:38 am
Location: North Carolina

Just got the call, tested positive for Lynch.

Postby BeansMama » Thu Mar 03, 2016 5:47 pm

Completely bummed, and worried about my kiddo carrying the mutation too.

Anyone know if there is an age they have to hit before they test for it?

You know what they say, knowing is half the battle.
41 yrs old
Tumor found 9/2015
Surgery 1 - 11/2015 LAR and colostomy
Surgery 2 - 11/2015 wound vac
Surgery 3 - 12/2015 revise resection, move colostomy
Mets to liver - tumor inoperable - one add'l met destroyed
Stage IVa (T3 N2a M1a)
Primary tumor 9 cm x 7.5 cm x 2 cm
Beginning Folfox 1/2016 - Failed
Beginning Folfiri and vectibix 8/2016 — Failed
Beginning Folfirinox + Avastin 11/2016 - Failed
Beginning Keytruda 1/2017
CEA drop from 345 to 7.3 after starting immunotherapy
Lynch positive 3/2016

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bitchslapped
Posts: 1502
Joined: Tue Sep 09, 2014 3:23 pm
Location: PNW/USA

Re: Just got the call, tested positive for Lynch.

Postby bitchslapped » Thu Mar 03, 2016 6:37 pm

Ethically the geneticist told my DNL, they don't like to test til age 18 to avoid burdening a child. So his mom had the pediatrician order the test instead for my 8yr old grandson because she just had to know. Though results did show a genetic abnormality, it was somewhat inconclusive because of his young age, so he will need to be retested when he is older.

Being Lynch positive is a blow when initially told, but in ways can be perceived also as an avenue to more regular testing than others may normally be allowed beyond the standard of care to catch any other primary cancers one might get. It does not mean that your children will automatically have Lynch syndrome, but certainly will need to be tested @ some point in time.

IMO having my young grandson tested did not reveal anything more than what we already knew: Colon cancer is in the family before 50 yrs of age (his grandpa, uncle). His dad is Lynch positive (not a cancer patient) & so my grandson will need to be retested & monitored when he is much older, which they would have done anyway.

They do subscribe to clean, organic living as closely as they can to reduce risk factors considering the family history...and now the genetic component only reinforces their commitment to that belief. Nothing has really changed other than my grandson will never be allowed to eat a hot dog in their presence.


Best Wishes
BS
DSS,35YO,unresect mCRC DX 7/'14,lvr,LN,peri,rib
FOLFOX+Avstn 4 Rnds d/c 10/'14
Stent 9/'14
FOLFIRI+Avstn 10/'14
Gone From My Sight 2/20/15
Me:garden variety polyps + precancerous polyp, diverticulitis
Carergver x2 DH,DM dbl occupancy,'03-'10
DH dx 47YO mCRC,'04-'07 fried x HAI
DM dx CC 85YO,CC,CHF,stroke,dementia,aphasia

lynch2015
Posts: 57
Joined: Fri Jun 19, 2015 12:04 pm
Facebook Username: tiffany.mccleary

Re: Just got the call, tested positive for Lynch.

Postby lynch2015 » Thu Mar 03, 2016 7:31 pm

My doctors and genetic counselors have said at 18 we should test our kids. I have 4 girls and would really like to know before they are 18. The reasoning I was given for not testing until 18 is because they wouldn't do any surveillance at young ages anyways. However, if my children are 18, they can choose whether or not to be tested. In my opinion, it's better for them to know so they can (and I can help) keep up their surveillance.
Lynch positive 2011
Dx stage 3b CC 6/2015
Right hemicolectomy 7/2015
Xeloda and Oxaliplatin 9/2015, 8 rounds
Xeloda reduced 10/2015
Oxaliplatin reaction on rounds 2 & 3
Oxaliplatin reduced to 75%
Oxaliplatin administered over 5 hrs to avoid reaction
Wife and mommy to 4 girls

NateA
Posts: 115
Joined: Sun Aug 02, 2015 7:41 pm
Facebook Username: Nathan Drew Allen

Re: Just got the call, tested positive for Lynch.

Postby NateA » Thu Mar 03, 2016 7:46 pm

On a positive note, Lynch peeps are doing pretty good in recent immunotherapy trials!!
7/15 dx CC stage 4 with lots of liver mets CEA 208
KRAS Mutant G12V, MSS.
9/23 from folfoxiri to folfox and Xeloda. CEA 25
11/11/15 all liver markers in the zone, CEA 4.0, moving to Avastin/xeloda for now..tumors shrinking
01/13/16 Avastin/xeloda CEA 3.5
03/11/16 clean PET CEA 4.4

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BeansMama
Posts: 959
Joined: Thu Jan 28, 2016 1:38 am
Location: North Carolina

Re: Just got the call, tested positive for Lynch.

Postby BeansMama » Thu Mar 03, 2016 8:45 pm

Thanks everyone! My kiddo is 9 so probably too early to test, I may be able to get her screened earlier as she has endocrine issues already. That is my big worry, she's already medically complex, hoping we aren't going to add Lynch to the list!
41 yrs old
Tumor found 9/2015
Surgery 1 - 11/2015 LAR and colostomy
Surgery 2 - 11/2015 wound vac
Surgery 3 - 12/2015 revise resection, move colostomy
Mets to liver - tumor inoperable - one add'l met destroyed
Stage IVa (T3 N2a M1a)
Primary tumor 9 cm x 7.5 cm x 2 cm
Beginning Folfox 1/2016 - Failed
Beginning Folfiri and vectibix 8/2016 — Failed
Beginning Folfirinox + Avastin 11/2016 - Failed
Beginning Keytruda 1/2017
CEA drop from 345 to 7.3 after starting immunotherapy
Lynch positive 3/2016

User avatar
BeansMama
Posts: 959
Joined: Thu Jan 28, 2016 1:38 am
Location: North Carolina

Re: Just got the call, tested positive for Lynch.

Postby BeansMama » Thu Mar 03, 2016 8:47 pm

NateA wrote:On a positive note, Lynch peeps are doing pretty good in recent immunotherapy trials!!


That is interesting, I wonder if testing positive will open up some different avenues of treatment. One can hope I suppose :D
41 yrs old
Tumor found 9/2015
Surgery 1 - 11/2015 LAR and colostomy
Surgery 2 - 11/2015 wound vac
Surgery 3 - 12/2015 revise resection, move colostomy
Mets to liver - tumor inoperable - one add'l met destroyed
Stage IVa (T3 N2a M1a)
Primary tumor 9 cm x 7.5 cm x 2 cm
Beginning Folfox 1/2016 - Failed
Beginning Folfiri and vectibix 8/2016 — Failed
Beginning Folfirinox + Avastin 11/2016 - Failed
Beginning Keytruda 1/2017
CEA drop from 345 to 7.3 after starting immunotherapy
Lynch positive 3/2016

jortego128
Posts: 286
Joined: Sat Aug 15, 2015 7:47 am

Re: Just got the call, tested positive for Lynch.

Postby jortego128 » Thu Mar 03, 2016 9:00 pm

Absolutely it does. Lynch syndrome carries a better prognosis than standard colon cancer and has also been shown to respond to PD(L)1 antibody immunotherapies.

You should take this news as a positive development!
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

Cathie
Posts: 78
Joined: Fri Mar 28, 2014 12:09 pm

Re: Just got the call, tested positive for Lynch.

Postby Cathie » Fri Mar 04, 2016 1:50 am

Forgive my ignorance but what is Lynch?

Cathie
Dx'd colo rectal cancer Oct 2002
radiation chemo November December 2002
Surgery Mar 2003 which was a temp ileo
Summer of 2003 more chemo
Ileo reversed Mar 2004
Cancer free since then

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BeansMama
Posts: 959
Joined: Thu Jan 28, 2016 1:38 am
Location: North Carolina

Re: Just got the call, tested positive for Lynch.

Postby BeansMama » Fri Mar 04, 2016 8:40 am

Cathie wrote:Forgive my ignorance but what is Lynch?

Cathie


Lynch is a genetic mutation that predisposes people with the mutation to certain types of cancer. It basically increases the odds and it can show up earlier.
41 yrs old
Tumor found 9/2015
Surgery 1 - 11/2015 LAR and colostomy
Surgery 2 - 11/2015 wound vac
Surgery 3 - 12/2015 revise resection, move colostomy
Mets to liver - tumor inoperable - one add'l met destroyed
Stage IVa (T3 N2a M1a)
Primary tumor 9 cm x 7.5 cm x 2 cm
Beginning Folfox 1/2016 - Failed
Beginning Folfiri and vectibix 8/2016 — Failed
Beginning Folfirinox + Avastin 11/2016 - Failed
Beginning Keytruda 1/2017
CEA drop from 345 to 7.3 after starting immunotherapy
Lynch positive 3/2016


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