Where to start? (and where to finish, most of all..!?)

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singingholly
Posts: 1133
Joined: Thu Feb 27, 2014 3:37 am
Location: Northern Italy

Where to start? (and where to finish, most of all..!?)

Postby singingholly » Tue Mar 17, 2015 3:00 am

I must start with apologizing for my absence and silence, I never stopped following my friends' stories but I was not able to write, the search for an adequate pain therapy left me all this time in a state of mental confusion due to oppioids, now it's a little better but it's still hard to reason about... anything.
Now, the real problem is that I have 2 spine mets. The fear, shock and sudden change of my condition make it difficult to reason about it, what to to do, what to expect... I feel paralized.
Please tell me what you think... Currently I'm on folfoxiri and palliative radiation on spine.
Thank you friends, even for keep calling me all this time. I'm not sure I deserve it but I really love you.
Olivia
Dec2011 sigm IIIst res T3N1(2/18)M0 Xelox
Oct2012 5liv.mets Dec 2012 liv.res
Jan2013 1liv.met Folfiri+avastin
Jul2013 liv.res Folfiri+/av
Feb2014 10+2lu.mets & 1abd node Folfoxiri+SBRT
Sep2014 Res rx l. BUT spot on diaph:SBRT
Dec2014 3+6lu.mets.Immuno

Nik Colon

Re: Where to start? (and where to finish, most of all..!?)

Postby Nik Colon » Tue Mar 17, 2015 3:12 am

I am so sorry, wish I knew what to say or how to help :(

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vilca11
Posts: 730
Joined: Fri Feb 14, 2014 11:19 am
Location: Moscow, Russia; Baltimore, USA 1992; Vilcabamba, Ecuador 2012

Re: Where to start? (and where to finish, most of all..!?)

Postby vilca11 » Tue Mar 17, 2015 3:50 am

Oh, Olivia, finally we hear from you.... You are so dear to so many on this board... I am very sadden by your news. And I can't think right this moment what could be an alternative to the treatment you are doing now. Will do some research, if I learn anything, will post it here. All the love, warmth and calming thoughts to you, dearest Olivia... I wish there was a way to ease your pain over the cyberspace....
Big hug, Vilca
11/2005 CC stage 1, F,50yo@dx
Mod dif adenocar, MSS, APC, TP53, CEAs1.6-4.8
1/12 1met liver@Vena Cava, RFA, 3oxi,11 5FU
8/13 2 mets same place,SBRT
4/14 2 Xeliri+Avastin
5/14 Nano Knife liver same 2 mets
6/14 2 Xeliri, ADAPT
4/15 PET, 2 same mets,Cryo Liver
5/15 MJ Oil, Herbs, Suppl, ADAPT
10/15 PET, same area, doubled in size, high SUV
10/15 RH, HAI, visceral involv., no LN
2/16 red FF, 50% red dose FUDR, CEA trends up
3/16 CT, PET, MRI L.Lobe all in small tumors
4/16 No acceptable options, going home

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chixter
Posts: 121
Joined: Wed Jun 25, 2014 5:31 pm

Re: Where to start? (and where to finish, most of all..!?)

Postby chixter » Tue Mar 17, 2015 6:31 am

singingholly wrote: I'm not sure I deserve it but I really love you.
Olivia


Olivia, for all that you have encouraged, helped, and comforted here even in the face of your own fight.... you deserve our love and so much more. As strangers to each other we gather here for support in our own individual struggles. But emotions and feelings shared soon eradicate the barrier between strangers. You, my lady are loved here and like everyone I wish you peace and comfort in the times ahead. Although I cannot physically reach you, I am holding your hand.

Greg
ImageFather/Caregiver to beautiful 25 y/o daughter with mCRC Stg 4

Moon
Posts: 119
Joined: Fri Apr 20, 2012 9:42 am

Re: Where to start? (and where to finish, most of all..!?)

Postby Moon » Tue Mar 17, 2015 6:34 am

Hi Olivia,
glad to hear from you but sorry to hear the reason for your absence.

Do you have a plan if radiation doesn't work?
For pain management (if radiation doen't) find a pain specialist. Treatment of pain doesn't only consist of paracetamol and opioids. There are other medicaments ( fx antidepressants or anti epileptic drugs) that can help to reduce the pain and the dosis of opiods without getting so tired or constipated. Sometimes local procedures with anesthecis are a possibility.
Many surgeons and oncs only know opioids.


Pain management isn't easy. I am dealing with increasing pelvic pain for many weeks. CT and MRI showed not a reason, a PET scan taken as a part of a study showed a lightning at the tail bone. They looked at my scannings one more time and found a little bone met.
Now I am waiting for my palliative radiation, after have talked with an onc, got a CT scan and bodypainting.Ithe pain is so quickly increasing. I am on opioids now and it is hard to find the balance between painfree but constipated and tired and not confused but pain.

I hope your mets are far away from your spinal cord and nerves, the radiation helps to get you painfree or nearly painfree, that you can sleep well and can use your brain when you need it.

Best wishes
M.
nov. 2011 RC Stage 3
dec. 2011 lap. rectumresection, temp. ileo.
jan.-june 2012 FLOX
aug. 2012 ileo. rev.
jan, sept 2013 surg. for livermet
june 2014 local recurrence + PC, FOFIRI/Avastin june-dec. break
june 2015 surg. for colon blockage

Girl111
Posts: 234
Joined: Fri Dec 06, 2013 4:43 pm

Re: Where to start? (and where to finish, most of all..!?)

Postby Girl111 » Tue Mar 17, 2015 6:55 am

Olivia, sorry to hear all that you are going through . It must be so
hard on you .

You were truly missed on here . I hope the pain will ease with the treatments x

Sarah
Dad diagnosed stage 3 cc nov 13
Bowel resection march 14
Started xeloda
1 liver met and 1 node ( small)
Started irinotecan - failed
Poss nano knife now and oxyplatin
Hope the chem works !

michelle c
Posts: 1912
Joined: Wed Dec 02, 2009 3:58 am

Re: Where to start? (and where to finish, most of all..!?)

Postby michelle c » Tue Mar 17, 2015 8:03 am

Oh Olivia, so nice to see you post....I've been worried about you and thinking of you often.

I'm sorry to hear of your spinal mets...I wish I knew what to say to you. You will remain in my thoughts and in my prayers. I pray for comfort and peace for you dear one. You are very much loved and I will be right by your side holding your hand.

❤❤❤ xoxox ❤❤❤
25 May 09 Dx with CC (sigmoid colon) 2 days after my 44th b'day
CEA prior to surgery 4.7
3 Jun 09 LAR - Stage III 3/10 lymph nodes
6 Jul - 10 Dec 09 12 cycles FOLFIRI
Genetic testing - inconclusive for Lynch
Jul 12 port removed & hernia repair

DarknessEmbraced
Posts: 3554
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: Where to start? (and where to finish, most of all..!?)

Postby DarknessEmbraced » Tue Mar 17, 2015 9:28 am

I'm so sorry to hear that you are in so much pain! I hope that the treatments help!*hugs* You are in my thoughts!
Diagnosed 10/28/14, age 36
Colon Resection 11/20/14, LAR (no illeo)
Stage 2a colon cancer, T3NOMO
Lymph-vascular invasion undetermined
0/22 lymph nodes
No chemo, no radiation
Clear Colonoscopy 04/29/15
NED 10/20/15
Ischemic Colitis 01/21/16
NED 11/10/16
CT Scan moved up due to high CEA 08/21/17
NED 09/25/17
NED 12/21/18
Clear colonoscopy 09/23/19
Clear 5 year scans 11/21/19- Considered cured! :)

SoConfused
Posts: 1026
Joined: Mon Jan 30, 2012 2:40 pm

Re: Where to start? (and where to finish, most of all..!?)

Postby SoConfused » Tue Mar 17, 2015 10:05 am

Hi Olivia,
It's good to hear from you though I am really disappointed at the news ... I know you are too.

Please look into treatment with the STAR™ Tumor Ablation System for immediate pain relief. Here is a link to the manufacturer's website that shares more info about the treatment and patient stories: http://www.dfineinc.com/

This should be available in Europe. I am wishing your pain away. Take care and be gentle with yourself.
Stage IV CC

peanut_8
Posts: 2340
Joined: Sun May 25, 2014 1:31 pm

Re: Where to start? (and where to finish, most of all..!?)

Postby peanut_8 » Tue Mar 17, 2015 10:29 am

Thank you for taking the time to update us on your condition, Olivia. I'm so sorry it is not the best news. I sincerely hope you are able to reduce your pain level with radiation treatments.
peanut
female, diagnosed Jan 14, RC stage 2a, age 56
MSS
April 14, 28 chemo/rad with Xeloda
June 14 adjuvant Xeloda 6 rounds
currently NED

ams5796
Posts: 2298
Joined: Fri Feb 06, 2009 10:07 am

Re: Where to start? (and where to finish, most of all..!?)

Postby ams5796 » Tue Mar 17, 2015 11:18 am

Olivia,

So glad you checked in with us. I hate what you're going through. You have seen how much love the folks on this board feel for you. I hope that love brings you comfort.


Ann
Stage 3C (or 4?) Rectal Cancer 01/07
2/10 lung mets
3/11 VATS
6/11 VATS
7/13 lung met
2/14 SBRT
NED 8/14
5/17 scan and MRI found treated spine met

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CRguy
Posts: 10270
Joined: Sun Feb 10, 2008 6:00 pm

Re: Where to start? (and where to finish, most of all..!?)

Postby CRguy » Tue Mar 17, 2015 11:38 am

Sending Love Peace and Harmony Olivia,
wishing you to be out of pain and the treatments working for you
You are amongst friends here and truly deserve all the love you have received... and more.

CRguy on the Journey
Caregiver x 4
Stage IV A rectal cancer/lung met
14 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

skypup
Posts: 2598
Joined: Mon Dec 17, 2012 12:12 pm

Re: Where to start? (and where to finish, most of all..!?)

Postby skypup » Tue Mar 17, 2015 11:46 am

chixter wrote:
singingholly wrote: I'm not sure I deserve it but I really love you.
Olivia


Olivia, for all that you have encouraged, helped, and comforted here even in the face of your own fight.... you deserve our love and so much more. As strangers to each other we gather here for support in our own individual struggles. But emotions and feelings shared soon eradicate the barrier between strangers. You, my lady are loved here and like everyone I wish you peace and comfort in the times ahead. Although I cannot physically reach you, I am holding your hand.

Greg

What Chixter said!!!

I'm hoping the radiation gets you out of pain. I think it was Kathryn that had good luck with that. Thank you for writing!

bitchslapped
Posts: 1534
Joined: Tue Sep 09, 2014 3:23 pm
Location: PNW/USA

Re: Where to start? (and where to finish, most of all..!?)

Postby bitchslapped » Tue Mar 17, 2015 12:07 pm

Hi Olivia,
You have a lot to process right now aside from the pain. I agree w/Moon in anticipating the need for a pain specialist. Too often docs don't refer patients out to specialists when maybe they should. What you deserve is pain control. Sounds like the radiation has helped w/that.
The only thought I have to add is we women are used to being the caregivers for our family, not the ones receiving the care. I hope you will lean more on your advocates (family/friends) to help navigate/push through the medical system in getting what you need regarding these new developments, especially while @ a disadvantage due to the effects of opioids + emotional upset in sorting through next steps.

Best Wishes to you (& Moon, to you as well).
bitchslapped
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

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MamaN
Posts: 666
Joined: Tue Dec 30, 2014 2:34 am

Re: Where to start? (and where to finish, most of all..!?)

Postby MamaN » Tue Mar 17, 2015 12:19 pm

Olivia
So nice to hear from you! Thank you for the update. Wishing you love and light. Hoping you can be as painfree as possible. So sorry to hear you are going through this. <3

Ronni
Dx@45 stage t3 n1b m unknown IIIB
Resected in 8/2010 rectosigmoid
5.5 tumor with 3 /26 lymph nodes
Lymph vascular invasion
Folfox sept 2010 to feb 2011
10 tx only stopped due to low wbc


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