End of the journey...No more treatment available

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ieowi
Posts: 202
Joined: Mon Jul 27, 2015 1:27 am

End of the journey...No more treatment available

Postby ieowi » Sat Dec 05, 2015 9:01 am

we just left Memorial sloan, after they recommended radiation+pembrolizumab we decided to fly and visit them, apparently the procedure is not very effective "in there words" and my father have multiple tumors, you should only have one tumor to do this trial,, makes me wonder why recommending it from the first place, but haven said that we didn't have any more options in MD Anderson. so we don't regret coming here.
they recommended to go home and live the rest of his life between family and friends.
I would like to thanks everybody in this forum specially DK37 who kept us up to date with the latest researches and trials. although we didn't manage to find any treatment/cure for my father but I sure did met very good people here.

I hope nothing but the best for all of you.
Last edited by ieowi on Sat Dec 05, 2015 3:47 pm, edited 2 times in total.
Father 58 yo , Colon cancer IV + 4 Lymph. 7/2015
K-ras Mutant,GNAS,FBXW7,PIK3CA, MSI-low
4 cycles irinotecan+FU5
developed abdominal met + lung met...Failed
4 cycle Oxaliplatin+folfox. peri met growing...Failed
unofficial trial !!!

pantufla
Posts: 134
Joined: Thu Dec 03, 2015 12:44 pm
Facebook Username: kelleykulina

Re: End of the journey for my Father

Postby pantufla » Sat Dec 05, 2015 9:14 am

I'm so sorry for your loss.
DH T2 N1b M0. 3/15 positive nodes.
Stage IIIA moderately differentiated adenocarcinoma.
Tumor size 6 cm.
Left hemicolectomy 10/26/15.
FOLFOX 11/30/15 to 5/2/16, full 12 cycles.
10/3/16 CT scan clear.
11/10/17 CT: "Focal opacity along the left lower lung, 7 mm. Two small peripheral opacities along the right lower lobe, 2 to 3 mm. A few small to mildly prominent left-sided central mesenteric nodes, up to 13 mm.
June 2019: NED.

JENNJ
Posts: 115
Joined: Tue Feb 17, 2015 8:00 pm

Re: End of the journey...No more treatment available

Postby JENNJ » Sat Dec 05, 2015 9:40 am

I am so so sorry to hear this. I know the pain and frustration and fear with knowing there is nothing left to try. Sending you, your Dad and your family nothing but the best. He is lucky to have you and you are lucky to have him. Enjoy each and every moment that you can.
Katy

Teddi
Posts: 241
Joined: Thu Jul 31, 2014 1:44 pm
Facebook Username: teddimcfarland

Re: End of the journey...No more treatment available

Postby Teddi » Sat Dec 05, 2015 12:10 pm

I am so sad for you. I hope that you get to spend time with your father, and that he is not in pain. You tried so hard, and I'm sure he appreciates your efforts

Teddi
47 at diagnosis
Colonoscopy, biopsy, CT, PET 6/14
Rectal cancer (tentatively) Stage III-b, MSS
Xeloda and radiation 25x finished 8/14
FOLFOX 5 cycles
Surgery 1/23/14 ~ T1N0MX ~ temp illeostomy
FOLFOX 3 cycles = total of 8
Illeostomy reversal 4/8/15
Clean scans x2, clear colonoscopy 9/15

JudeD59
Posts: 726
Joined: Sun Apr 12, 2015 12:16 pm

Re: End of the journey...No more treatment available

Postby JudeD59 » Sat Dec 05, 2015 1:32 pm

I'm sorry to hear this. You'll be in my prayers. Even though the outcome is not what you wanted, you at least know you tried everything you could. I'm glad you found this board for support and advice and so we could get to know you. We're still here for you for the rest of the journey and beyond if you need us. Sending hugs.

Judy
56 yrs old, wife, mother to 4 daughters
RC Stage II T3N0M0 DX April 2, 2015
6 cm. mid-rectum-CEA 121
Xeloda and radiation finished 06/15/15- CEA 242
CEA right before surgery 81
LAR performed 8/12/15 Temporary ileostomy
CEA 10-21-15 1.6
PET scan 11-4-15 All clear
Port installed 11/11/15
Folfox started 11/18/15
Folfox stopped due to bad reaction
Reversal 2/17/16
CEA 2/3/16 1.7
CEA 3/31/16 1.3
CT Scan 4/12/16 All Clear
Port removed 4/21/16
CEA 5/24/17 1.4

User avatar
Mastan
Posts: 433
Joined: Sat Feb 19, 2011 11:12 am
Location: Albuquerque, NM

Re: End of the journey...No more treatment available

Postby Mastan » Sat Dec 05, 2015 1:45 pm

It is not over until your father says it is over. There are many clinical trials out there. Have you done an exhaustive search through them? When one goes for a consult you typically get the opinion from one Onc. That is not the be all end all regardless of which institution they are affiliated with.

Keep searching,

Mark
Dx 6/2010 rectal CA

Lee
Posts: 5971
Joined: Sun Apr 16, 2006 4:09 pm

Re: End of the journey...No more treatment available

Postby Lee » Sat Dec 05, 2015 3:45 pm

So sorry for this recent turn of events. I hope your family is able to create many wonderful memories in the days ahead.

You and your family are in my thoughts and prayers.

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 10 years and counting!

jhocno197
Posts: 817
Joined: Mon May 11, 2015 9:33 pm

Re: End of the journey...No more treatment available

Postby jhocno197 » Sun Dec 06, 2015 8:37 pm

I am sorry.
DH - dx Dec 2014, stage IV with bladder & peritoneal involvement - non-resectable
Colostomy
FOLFOX failed
FOLFIRI failed
Tumor actually distending pelvic skin
Not a candidate for last-ditch pelvic exenteration
Stivarga finally begun 2/19/16
Tumor growing/fungating
Lonsurf started 11/18/16
Died 3/10/17

jortego128
Posts: 288
Joined: Sat Aug 15, 2015 7:47 am

Re: End of the journey...No more treatment available

Postby jortego128 » Sun Dec 06, 2015 9:06 pm

ieowi, Im very sorry to hear this-- it sounds like you have taken every step possible in efforts to get treatment for your father. Its very disheartening, but stay vigilant-- do the Vitamin D supplements, cimetidine, and maybe even consider IV vit C if your father is KRAS or BRAF mutant.

Pray for healing and comfort for your father, spend as much time with him as you can, love and laugh with him. I will pray for him.

Josh
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

jens22
Posts: 1009
Joined: Wed Jun 09, 2010 9:26 am
Facebook Username: jspirio
Location: Long Island, NY

Re: End of the journey...No more treatment available

Postby jens22 » Sun Dec 06, 2015 9:35 pm

I'm so sorry to hear this....but at the very least you know that you have done Everything. Prayers for Strength
Colonoscopy 3/10 for ? hemmorrhoid.
Diag Colon Cancer 3 days later
Colon Ressection 3/30/10
Stage 3B 5/14 Nodes positive.
Power Port and 7 months of Chemo
Port removed 11/11
8 negative Cat Scans..... 7 years cancer free and Discharged from Sloane Kett!!
Diag age 47 , now 54 Mom of 3 boys.

plastikos
Posts: 330
Joined: Wed Jan 14, 2015 6:09 am

Re: End of the journey...No more treatment available

Postby plastikos » Sun Dec 06, 2015 9:53 pm

I am sorry to hear this. I am sure it is not easy. Are you sure you do not want to get other opinions? HIPEC is not an option? Sorry I am not familiar with the details of the extent of your father's disease. My goal is not to give false hope. But I for one would never stop trying. Maybe at least this is the time to try all those alternative non-toxic therapies you were afraid to try during conventional treatment. Reishi tea? Essiac? How about hyperthermia therapy using a Far Infrared Sauna or a BioMat? They may or may not help. But my point is what have you got to lose? Your choice of course. Hoping and praying for the best.
St. IV Colon CA @ 37, male, Kras wild, MSI-high (2014)
11/2014 Right Hemicolectomy + Liver Resection
12/2014 - 6/2015 FOLFOX + Cetuximab
10/2015 - Recurrence liver
Liver resection 10/2015
FOLFIRI 11/2015 - 5/2016
Recurrence liver, nodes 11/2016
Pembrolizumab started 12/2016 -> pseudoprogression(?) -> biliary obstruction -> biliary stenting
Chemo 4x: most mets inactive and smaller on PET-CT
March 2017 - Back on Pembrolizumab again
Sept 2017 - SIRT - > NED
2019 NED

Flinders
Posts: 5
Joined: Fri Dec 04, 2015 7:05 pm

Re: End of the journey...No more treatment available

Postby Flinders » Sun Dec 06, 2015 10:06 pm

This also make me very sad, Old Dominion Research have the science to help even at this stage, https://www.odu.edu/bioelectrics/research, this works and its very quick , just maybe they would be able to include your dad in a trial?
I have endured 12 months of this Biologic treatment and am clean. God Bless.

dudette
Posts: 106
Joined: Sat Oct 17, 2015 10:04 am

Re: End of the journey...No more treatment available

Postby dudette » Mon Dec 07, 2015 4:27 pm

I'm still new'ish to the board and it's the first time that I respond to "bad news". I never really know what to say without using expletives about this terrible disease. I'm sorry that you have to go through this.

However, I agree with the general sentiment here, 'it's not over until it's over'.

In Germany a company developed a new peri met treatment called PIPAC - Pressurized IntraPeritoneal Aerosol Chemotherapy. The main research institute is the Ruhr University in a city called Bochum. Apparently the side effects are less severe than with HIPEC. I looked it up and the University of Texas used to be a research collaborator. Head to Texas Endosurgery Institute, San Antonio http://www.texasendosurgery.com

Here is a manufacturer/developer link in English: http://www.capnomed.de/en/treatment.html

I'm sure you looked in every direction but I agree with plastikos that now is a good time to pull out all stops. Hyperthermia is increasingly becoming an add-on standard in Germany; same for high-dose mistletoe infusions. I can PM you details of clinics in Germany where they include this on top of chemotherapy (and which are not cookook lunatics who promise to cure all cancers if you give them all your money). While it will probably not cure your dad it may give him time until you come up with another plan of attack - the exact reason why I just bought an infrared sauna (cheap second-hand off ebay).

I hope you can muster up the strength to keep looking until you really, really, really have exhausted all options. Lots of strength to you and your family.
Temi
Dx 03/2015 @ age 41 - CC stage IV - pT3 N2b (14/29) cM1 (hep) L1 V1 Pn1 R1
Wild K-RAS, N-RAS, BRAF / MSS
unresectable mets liver 60% + lungs
Surgery
04/15 - sigmoid resect.
07/16 - hysterectomy (ovaries)
Chemo
05-06/15 - 4 x Folfirinox
12/15 - 02/16 4 x Xeliri + Avastin
03-05/16 9 x Xeloda
09-12/16 Folfiri + Cetuximab
01/2017 - metronomic chemo + methadone
July 20, 2107 - Temi has passed away.

cathy123
Posts: 665
Joined: Sat Nov 08, 2014 3:36 pm

Re: End of the journey...No more treatment available

Postby cathy123 » Mon Dec 07, 2015 9:48 pm

Very sorry you have reached this point.
Cathy

Diagnosed 10/14 low rectal cancer age 43
Clinical T2NXMX
Radiation/xeloda 12/14-1/15
LAR with temp Ileo 3/15
pT2N0M0, lymphatic invasion 0/37 nodes
4 xelox, 1 xeloda only
Reversal 9/15
Mom to 9&11 year olds

plastikos
Posts: 330
Joined: Wed Jan 14, 2015 6:09 am

Re: End of the journey for my Father

Postby plastikos » Mon Dec 07, 2015 10:46 pm

pantufla wrote:I'm so sorry for your loss.

As far as I know the person is still alive.
St. IV Colon CA @ 37, male, Kras wild, MSI-high (2014)
11/2014 Right Hemicolectomy + Liver Resection
12/2014 - 6/2015 FOLFOX + Cetuximab
10/2015 - Recurrence liver
Liver resection 10/2015
FOLFIRI 11/2015 - 5/2016
Recurrence liver, nodes 11/2016
Pembrolizumab started 12/2016 -> pseudoprogression(?) -> biliary obstruction -> biliary stenting
Chemo 4x: most mets inactive and smaller on PET-CT
March 2017 - Back on Pembrolizumab again
Sept 2017 - SIRT - > NED
2019 NED


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