A Word to the New People (and the Old People)

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Julie YW
Posts: 169
Joined: Tue Aug 27, 2013 2:25 am
Facebook Username: Julie.yip-williams

A Word to the New People (and the Old People)

Postby Julie YW » Fri Apr 07, 2017 1:20 pm

I haven't been here for awhile. It's always a little shocking to see all the new names. I feel for those of you who are relatively recently diagnosed. I want to tell you all not to panic, that you have time. Many of us have been managing with active disease for a long time. I often think how I envy people who are diagnosed now. The landscape of research and science is so vastly different from what it was when I was diagnosed. You have standard treatments which will hopefully buy you a lot of time and then there are trials.

I'm on my third experimental treatment and still going. I feel like an old veteran now. For those who have been at it for awhile, I know you can relate -- I'm tired. I honestly don't know how I keep going. A part of me welcomes death. That's what my latest blog post is about -- the newest trial and being tired.

https://julieyipwilliams.wordpress.com/ ... paralysis/

For those who are new, I write a blog that's pretty honest, maybe too honest for those who are new to this. I found it really helpful to read the blogs of those who had gone before me. So check it out if you think it might be useful. People tell me I voice what they can't express and that helps them feel less alone.
DX July 2013, 37yo
12 of 68 LN
Stage IV w/ drop peri met
Folfox 8/12/13
Clean scans 1/24/14
Rising CEA 2/13/14
HIPEC 3/13/14
Folfiri 4/21/14
Recurrence in lungs 12/19/14
Xeloda & Avastin
Follow my blog: http://julieyipwilliams.wordpress.com/about/

KElizabeth
Posts: 332
Joined: Sat Oct 31, 2015 12:41 pm
Facebook Username: KElizabeth
Location: Omaha

Re: A Word to the New People (and the Old People)

Postby KElizabeth » Fri Apr 07, 2017 7:05 pm

Thanks for sharing. I'm tired too, but going forward always.
Female age 38- ,two kids, age eleven and fifteen.
Colon Cancer - DX March 2013
Age 34 at DX - Stage III B
Resection surgery -May 2013
FOLFOX - June, 2013 to Sept, 2013
5FU plus leukavorin Sept, 2013 to Dec, 2013
METs liver and lungs discovered Sept, 2015
KRAS - MSS
FOLFURI plus Avastin - Sept, 2015 - current
Art therapy January 2015 to current
CEA at recurrence:10.1/august, 2015
CEA: 1.9 February, 2016
CEA:: 10.2 December, 2016
CEA: 40.3 January, 2017
CEA: 16.4 March 2017
Facebook.com/natureinink

Steph20021
Posts: 430
Joined: Sat Dec 27, 2014 4:58 pm
Location: Ontario, Canada

Re: A Word to the New People (and the Old People)

Postby Steph20021 » Sat Apr 08, 2017 12:27 am

Julie I love your blog and always read the minute I get my email,notification that you've posted. Your latest blog brought me to near tears. I was on the edge of my seat wondering if you would still elect to do the trial given the risk or not. I am not sure what I would do in your shoes but I hope I'd be as brave as you are. I am rooting for you and wondering when you will have your first scan to check on the progress. Wishing you all the best, always. Thanks for sharing. You have a beautiful way with words. But honestly, your account of how rough immunotherapy is, came to me as quite a shock. It's the first account I've read that makes it sound so painful and horrible. Love your honesty.
Last edited by Steph20021 on Sun Apr 23, 2017 12:30 am, edited 1 time in total.
DX 1/31/14 @ 33- SPS-T4a(invades visceral peri), N2a(6/106 LN), M1a(ovary) (Stage 4a) MSS
2/1/14-subtotal col, lost R ovary, temp ileo
3/14-9/14- folfox; sepsis
10/14- rev ileo
11/14-CT/PET: L ovary met, pelvic met, (?)ghost liver met(?)
12/14-folfiri -13 rds kept me stable from 3/15-6/15
7/15- clear flex sig
8/15-HIPEC, hysterectomy et al, 2nd temp ileo, NED?
09/15- cea 0.9
Current: abdo wall mets and lymph nodes
Jan/17- pulmonary embolism
Feb/17- 1 wk radiation to abdo wall
Current- folfiri 4 life

User avatar
LPL
Posts: 137
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

Re: A Word to the New People (and the Old People)

Postby LPL » Thu Apr 20, 2017 6:52 pm

Hi Julie YW,

My 1st language is not English, and even if it was I'm sure I could never find good enough words to express how grateful I am that you posted a link to your Blog. I clicked on that link, could not stop reading and read all your Blog posts.
I have so much respect for you and I want to Thank You So Much for being so honest in your writing - it feels as your words have changed me. Whishing with all my heart for You that the Experimental ongoing treatments will help and will be less tiring as they continue.
DH @ 65 DX 4/11/16 CC recto-sigmoid junction
Adenocarcenoma pt 35x15x9mm G3(biopsi) G1(surgical)
Mets 3 Liver resectable
T4aN1bM1a Stage IVa 2/9 LN
MSS, KRAS-mut G13D
CEA & CA19-9: 5/18 2.5 78 8/17 1.4 48 2/14/17 1.8 29
4 Folfox 6/15-7/30 (b4 liver surgery) 8 after
CT: 8/8 no change 3/27/17 NED for now :D
:!: Steroid induced hyperglycemia dx after 3chemo .. hospitalized, insulin -> Metformin
Surgeries (open):
3/18 Emergency colostomy 5/23 Primary+gallbl+colostomy reversal (+port) 9/01 Liver mets


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