New here...At a Crossroad

Please feel free to read, share your thoughts, your stories and connect with others!
TXLiz
Posts: 226
Joined: Thu Sep 22, 2016 3:31 pm

Re: New here...At a Crossroad

Postby TXLiz » Thu Nov 09, 2017 12:02 pm

40 rounds of chemo, you are a warrior! I have so much respect for you and your fighting spirit.

I imagine your body and mind are both drained and weakened, and everything seems miserable when you try to think of your options going forward.

I haven’t had anywhere near 40 rounds of chemo, and at times I was ready to cry uncle. (Apparently I’m a softie.)

Since you believe in God, as I do, can you speak with a pastor, chaplain, priest, anyone who can speak to your faith shared beliefs? I have, and found comfort and strength, even through sadness.

I will be thinking of you and your family and hoping you can get further helpful treatment.
Last edited by TXLiz on Sun Nov 12, 2017 7:04 am, edited 2 times in total.
Vomiting and blockage 9/19/16 46 y F
R hemi colectomy 9/20/16
Stage 3 B CRC, located in cecum
3 out of 16 lymph nodes positive
perineural invasion/lymphovascular invasion
infiltrating, mod differentiated adenocarcinoma with a mucinous component
separate tumor nodules present in pericolonic adipose tissue
Baseline PET scan clear 9/16 CEA 0.5
FOLFOX 10/16- 3/17
April 16th, CT scan clear. CEA 1.1
Lynch "inconclusive"
Colonoscopy 10/5/2017 clear

Janis
Posts: 7
Joined: Thu Sep 28, 2017 11:30 am
Facebook Username: Janis Ishmael Hill
Location: Houston, Texas
Contact:

Re: New here...At a Crossroad

Postby Janis » Fri Nov 10, 2017 4:29 pm

Pemba wrote:I’m so sorry to hear about your current situation.

I think I depends on life quality, how affected are you by the chemotherapy? Dose it knock you out completely or can you live a “normal” life. If the chemo don’t ruin your life quality I would keep on going, what can it hurt really, the medical world is moving so fast that nothing is ever sure, there may be a new trial or new medicin just around the corner.

If you on the other hand feel like chemo is draining everything good out of your body, then I understand why you would want to enjoy the last time the best way as possible.

I have linked to a Ted Talk, that I think you should view, it’s very positive and full of love.

https://www.ted.com/talks/lucy_kalanith ... xt#t-21134

I hope you find peace at whatever choice you make, remember it’s your life, YOU decide.

So much love, hugs and kisses from me.


Thank you so much for the link and you are right it is very helpful. I have gained a better perspective of all this since I've had time to let it absorb. I say loud and clear I am not ready to give up. Love hugs and kisses back at you my friend.
dx 11/2015 mom of 2
stage lllc T3N2M0 cc sigmoid
12/2015 surgery tumor 6.5x7cm
18in sig removed no ostomys
Lynch neg Kras wild cea 7
Folfox+oxi
1/2015 mets to both lungs 11 in total
dropped oxi and added avastin
7/2017 2 mets on liver
Dropped folfox started Irinotecan w/Avastin
10/2017 mets everywhere too many to list
cea 50
@MD Anderson

Janis
Posts: 7
Joined: Thu Sep 28, 2017 11:30 am
Facebook Username: Janis Ishmael Hill
Location: Houston, Texas
Contact:

Re: New here...At a Crossroad

Postby Janis » Fri Nov 10, 2017 4:49 pm

NHMike wrote:Your situation is quite difficult and I understand the part about spending so much time in treatment that it leaves little time to enjoy life. I understand that you want to be there for your family as long as you can but they likely would want you to enjoy life if it's clear that there aren't any solutions on the horizon. I have a friend that's on the chemo for life program and he's on short-term disability and asks "why me?". His medication will keep him alive until hopefully a cure or procedure can be found. He has some side-effects but no spread so his position is tenable for him. You are seeing spread so things are harder for you. It's definitely one of the things that all of us with Stage 3 worry about at one time or another or maybe all the time.

The answer to your question is intensely personal. I think that I know what I'd do in your case but that's me.

Thank you so much for your inspiration. I now know what I have to do. Pull up my Texan bootstraps and kick butt. And thank you so so much for making me realize that as long as I am alive A cure or new treatment can be found any day now with God's blessing.
dx 11/2015 mom of 2
stage lllc T3N2M0 cc sigmoid
12/2015 surgery tumor 6.5x7cm
18in sig removed no ostomys
Lynch neg Kras wild cea 7
Folfox+oxi
1/2015 mets to both lungs 11 in total
dropped oxi and added avastin
7/2017 2 mets on liver
Dropped folfox started Irinotecan w/Avastin
10/2017 mets everywhere too many to list
cea 50
@MD Anderson

Janis
Posts: 7
Joined: Thu Sep 28, 2017 11:30 am
Facebook Username: Janis Ishmael Hill
Location: Houston, Texas
Contact:

Re: New here...At a Crossroad

Postby Janis » Fri Nov 10, 2017 4:59 pm

radnyc wrote:I would absolutely star looking for clinical trials. This is where the future of research is. Ask your oncologist and check:

https://clinicaltrials.gov

Thank you so much for the link. I have had time for all this to sink in and I am definitely not not not giving up.
dx 11/2015 mom of 2
stage lllc T3N2M0 cc sigmoid
12/2015 surgery tumor 6.5x7cm
18in sig removed no ostomys
Lynch neg Kras wild cea 7
Folfox+oxi
1/2015 mets to both lungs 11 in total
dropped oxi and added avastin
7/2017 2 mets on liver
Dropped folfox started Irinotecan w/Avastin
10/2017 mets everywhere too many to list
cea 50
@MD Anderson

User avatar
CRguy
Posts: 9286
Joined: Sun Feb 10, 2008 6:00 pm

Re: New here...At a Crossroad

Postby CRguy » Fri Nov 10, 2017 5:20 pm

Hey Janis
sending you POSI+++VIBES here sista'

@ MDA you have good folks on your side and you will ALWAYS have good folks on your side here on CTalk.
Consider checking out this other trial finder organized by our own Maia and DK37 from here
http://trialfinder.fightcrc.org/ .... OR post into Maia's topics / send a PM and she will be a resource for you as well !

support and positive vibes ..... the head of my karate federation has the exact same view as I do, so I will share his quote here with you

"You are not finished when you lose. You are finished when you quit."
Sensei Masaru Shintani

over the years I have won a few battles and lost a few battles
BUTT ... I will never quit

sounds to me like you have that spirit too

Love Peace and Harmony
CRguy on the Journey with y'all
Caregiver x 3
Stage IV A rectal cancer/lung met
10 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

TXLiz
Posts: 226
Joined: Thu Sep 22, 2016 3:31 pm

Re: New here...At a Crossroad

Postby TXLiz » Sun Nov 12, 2017 6:49 am

Janis, I am so sorry I did not read you post carefully enough to see that you already are a patient at MD Anderson.

I hope that you can find a clinical trial that could help you.

No matter what your decision, I will be thinking of you and praying for you and your family.
Last edited by TXLiz on Sun Nov 12, 2017 7:02 am, edited 2 times in total.
Vomiting and blockage 9/19/16 46 y F
R hemi colectomy 9/20/16
Stage 3 B CRC, located in cecum
3 out of 16 lymph nodes positive
perineural invasion/lymphovascular invasion
infiltrating, mod differentiated adenocarcinoma with a mucinous component
separate tumor nodules present in pericolonic adipose tissue
Baseline PET scan clear 9/16 CEA 0.5
FOLFOX 10/16- 3/17
April 16th, CT scan clear. CEA 1.1
Lynch "inconclusive"
Colonoscopy 10/5/2017 clear

WarriorSpouse
Posts: 80
Joined: Tue Aug 16, 2016 9:02 pm

Re: New here...At a Crossroad

Postby WarriorSpouse » Sun Nov 12, 2017 1:01 pm

Hey Janis,
I am sorry to read what you are going through.

From my wife's past experiences, she has been successful being on Zeloda and Avastin, on a two week on and one week off maintenance program. The Avastin comes once at the beginning of the two week cycle.

Since you are at MD Anderson, I would press them hard on a proactive treatment plan including Avastin, and what ever chemo has worked best for you historically. From your footer information, it looks like Avastin has worked for you in the past, why are you not using it now? Everyone is different and not one treatment is the same from patient to patient, but be proactive and push forward to NED status again.
All the best on your decisions and plan forward.

Good luck!
WS
Spouse of wife 47 years old
10/2014, Stage IV Metastatic CC
Lymph node involvement 12/15, w/ positive PET on para-aortic lymph nodes.
5 cm sigmoid tumor resection as well as positive Virchow lymph node.
KRAS mut, Highly Differentiated, Lynch Negative
Folfox and Avastin 1 YR (Oxi for 5 months) NED 05/2015
Zeloda and Avastin since 01/2016
Chemo break 03/2017, back on Zeloda and Avastin 04/2017.

"...Perseverance is not a long race; it is many short races one after the other."
-Walter Elliot

Janis
Posts: 7
Joined: Thu Sep 28, 2017 11:30 am
Facebook Username: Janis Ishmael Hill
Location: Houston, Texas
Contact:

Re: New here...At a Crossroad

Postby Janis » Tue Nov 14, 2017 3:46 pm

WarriorSpouse wrote:Hey Janis,
I am sorry to read what you are going through.

From my wife's past experiences, she has been successful being on Zeloda and Avastin, on a two week on and one week off maintenance program. The Avastin comes once at the beginning of the two week cycle.

Since you are at MD Anderson, I would press them hard on a proactive treatment plan including Avastin, and what ever chemo has worked best for you historically. From your footer information, it looks like Avastin has worked for you in the past, why are you not using it now? Everyone is different and not one treatment is the same from patient to patient, but be proactive and push forward to NED status again.
All the best on your decisions and plan forward.

Good luck!
WS

Thank you very much and I hope your wife continues to do very very well. I have been on avastin for almost 2 years now. I have never dropped the avastin. At the present time I am taking Irinotecan with avastin. Thank you very much for the input.
dx 11/2015 mom of 2
stage lllc T3N2M0 cc sigmoid
12/2015 surgery tumor 6.5x7cm
18in sig removed no ostomys
Lynch neg Kras wild cea 7
Folfox+oxi
1/2015 mets to both lungs 11 in total
dropped oxi and added avastin
7/2017 2 mets on liver
Dropped folfox started Irinotecan w/Avastin
10/2017 mets everywhere too many to list
cea 50
@MD Anderson

Janis
Posts: 7
Joined: Thu Sep 28, 2017 11:30 am
Facebook Username: Janis Ishmael Hill
Location: Houston, Texas
Contact:

Re: New here...At a Crossroad

Postby Janis » Tue Nov 14, 2017 3:51 pm

NHMike wrote:
mpbser wrote:"get to MD Anderson and get your tumor tested for MSI status"

I would imagine that that was already done. Janis is a patient at MD Anderson. Wouldn't such a big cancer center test MSI as a matter of course?

Janis -- sending positive thoughts your way.


My local hospital is nowhere near top-ranked and they tested MSI status using the cheaper IHC testing. I would guess that MD Anderson would do a full NextGen Genomic Tumor analysis to get the mutation and variant so they would know exactly what they are dealing with.


Thank you so much sweetie for the input. I will be asking my oncologist about this. I also seen your signature that you recently went through surgery and I hope all is well with you. Thanks so much.
dx 11/2015 mom of 2
stage lllc T3N2M0 cc sigmoid
12/2015 surgery tumor 6.5x7cm
18in sig removed no ostomys
Lynch neg Kras wild cea 7
Folfox+oxi
1/2015 mets to both lungs 11 in total
dropped oxi and added avastin
7/2017 2 mets on liver
Dropped folfox started Irinotecan w/Avastin
10/2017 mets everywhere too many to list
cea 50
@MD Anderson

NHMike
Posts: 544
Joined: Fri Jul 21, 2017 3:43 am

Re: New here...At a Crossroad

Postby NHMike » Wed Nov 15, 2017 10:53 am

Janis wrote:
NHMike wrote:
mpbser wrote:"get to MD Anderson and get your tumor tested for MSI status"

I would imagine that that was already done. Janis is a patient at MD Anderson. Wouldn't such a big cancer center test MSI as a matter of course?

Janis -- sending positive thoughts your way.


My local hospital is nowhere near top-ranked and they tested MSI status using the cheaper IHC testing. I would guess that MD Anderson would do a full NextGen Genomic Tumor analysis to get the mutation and variant so they would know exactly what they are dealing with.


Thank you so much sweetie for the input. I will be asking my oncologist about this. I also seen your signature that you recently went through surgery and I hope all is well with you. Thanks so much.


I'm in the office today, 15 days after surgery. So still nowhere near 100% but things get better fast when you get to a certain point.
06/23/17: ER rectal bleeding; Colonoscopy+Biopsy
07/13/17: Stage 3B rectal cancer. T3, N1b, M0. 5.2 x 4.5 x 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6 mm, 5 x 5 mm.
Xeloda 3,400 mg/day + radiation 07/31 - 09/08.
CEA 2.7; halfway through treatment: 1.9; after treatment: 1.8.
MSS, KRAS G12D
10/06/17: 2.7 x 2.2 x 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 mm (-75%), 5 x 3 mm (-40%). 5.1 CM from AV.
Surgery: 10/30/17 LAR, Temp Ileostomy


Return to “Colon Talk - Colon cancer (colorectal cancer) support forum”



Who is online

Users browsing this forum: Bing [Bot], orlar, Yahoo [Bot] and 36 guests