Small update . . . .

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AnnClare
Posts: 241
Joined: Wed Sep 09, 2015 3:31 pm

Small update . . . .

Postby AnnClare » Fri Jun 16, 2017 4:10 pm

This morning, I met with the neuorsurgeon to discuss my on-going dizziness / imbalance issues. During the office visit / exam, he did not seem overly-concerned, explaining (which I already knew) that it could be the result of swelling caused by the brain radiation.
He tends to err on the side of caution (a good thing, I've come to understand and appreciate), so he ordered a CT scan of my brain.
Naturally, the CT scan showed some hydrocephaly (to be expected), and I was told an MRI would be 'more conclusive (duh - why didn't he just order that instead?!), BUT that it wasn't something that needed to be done ASAP, or before next week.
I reiterated that I'd be getting the PET scan results Monday afternoon from the oncologist, and from what I've gathered, those are more informative this close post-rad than either CT OR MRI, so . . .more wait and see. The fact that he didn't want me to go to the ER, or do something NOW, I'll take as a positive sign. :)

Also, MD Anderson wants to see me next Friday morning. This will be my 1st appointment / consult, so I am nervous. Yet I'm also relieved / thankful to actually have an appointment with them. They're a 5-hour drive away, AND, more importantly, I've heard great things about them, their approach, and treatment options. Fingers crossed & here's hoping (always!)
42 yr. old female
Rectal cancer Stage 3C T3 N1 M0 - Sept 2015
28 rounds radiation w/Xeloda - Nov - Dec 2015
2/17/16 - Surgery to remove rectal tumor, lymph nodes (2/20+), ovaries & fallopian tubes, temp. ileostomy
3/28/16 - 9/26/16 -12 rounds FOLFOX w/full oxi
Ileo reversal 10/27/16; Port removed 12/1/16
Lung mets confirmed 2/6/17
March-May 2017 - brain mets; brain rad. 5/9-5/29/17

Lee
Posts: 4898
Joined: Sun Apr 16, 2006 4:09 pm

Re: Small update . . . .

Postby Lee » Fri Jun 16, 2017 10:00 pm

AnnClare wrote:. . . The fact that he didn't want me to go to the ER, or do something NOW, I'll take as a positive sign. :)


I take it as a good sign too. :D Enjoy the weekend.

Your fellow "ass kicker"

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!

Steph20021
Posts: 477
Joined: Sat Dec 27, 2014 4:58 pm
Location: Ontario, Canada

Re: Small update . . . .

Postby Steph20021 » Fri Jun 16, 2017 10:19 pm

Wow, a five hour drive for you for your MD consult, make sure you pack some tasty snacks for the journey :) Major kudos to you, not sure I could do such a trip. will you spend the night in a hotel and drive home the following day?
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

TXLiz
Posts: 179
Joined: Thu Sep 22, 2016 3:31 pm

Re: Small update . . . .

Postby TXLiz » Fri Jun 16, 2017 10:22 pm

Glad things are going well!

My two experiences at MDA have been really good. They are on it.

It's big and crowded but worth it.

In April, they were relocating their pharmacy and it seems always crowded and is a pretty long wait. It's packed! The lab is as well. It's an ocean of people, so be ready to wait

It's worth it. Good luck and I hope the best for you.

If you stay in a hotel, there are tons around the medical center and a lot of them have a shuttle that leave every half hour. The traffic in that area is massive due to the hospitals in the area...the first time I went with my son and neither of us wanted to find our way around, so we used our hotel shuttle. The driver was very nice.

Some hotels offer "medical" rates and are mostly cancer patients going to MDA. It's comforting to not feel like the afflicted patient and be amongst others who are facing similar challenges.

They have a big cafeteria with lots of food options too.
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"

AbbyDoo
Posts: 102
Joined: Wed Jun 29, 2016 2:25 am
Location: So.Ca.

Re: Small update . . . .

Postby AbbyDoo » Sat Jun 17, 2017 4:24 am

Fingers crossed and hoping right along with you.
Ugg waiting, waiting for a game plan is always one of the hardest parts. Sounds like your going to have a pretty action packed week next week. Good luck Monday on your PET scan results, I will make sure to check the board for your post saying radiation did the trick.
I so wish there was a magic pill or we could kiss you and make it all better.
53 yrs old
4/30/15 colonoscopy Mass found
5/21/15 staged 3 C rectal cancer
7/3/15 finished xeloda and radiation 28 rounds
9/30/15 LAR
10/29/15 picc line installed
11/2/15 start chemo 5 fu Oxaliplatin
3/7/16 Finish Chemo
4/29/16 Ileostomy Reversal.
7/13/16 colonoscopy clear.
CRC survivors know there Sh%t

AnnClare
Posts: 241
Joined: Wed Sep 09, 2015 3:31 pm

Re: Small update . . . .

Postby AnnClare » Sat Jun 17, 2017 9:46 am

Thanks, guys.

My sister-in-law has a friend who lives near MDA and has graciously offered to let me stay with her. Still not sure if I'm going to fly or go by car (with someone else driving, of course!)

My husband drove me to work this morning, as the dizzies are still there today. Argh.
Butt I'm still here! "Not like this, and not today!"
42 yr. old female
Rectal cancer Stage 3C T3 N1 M0 - Sept 2015
28 rounds radiation w/Xeloda - Nov - Dec 2015
2/17/16 - Surgery to remove rectal tumor, lymph nodes (2/20+), ovaries & fallopian tubes, temp. ileostomy
3/28/16 - 9/26/16 -12 rounds FOLFOX w/full oxi
Ileo reversal 10/27/16; Port removed 12/1/16
Lung mets confirmed 2/6/17
March-May 2017 - brain mets; brain rad. 5/9-5/29/17

DarknessEmbraced
Posts: 2605
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: Small update . . . .

Postby DarknessEmbraced » Sun Jun 18, 2017 4:51 pm

I'm glad the neurosurgeon wasn't concerned and hope everything goes well at MD Anderson!
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 01/21/2016
NED 11/10/16

Lee
Posts: 4898
Joined: Sun Apr 16, 2006 4:09 pm

Re: Small update . . . .

Postby Lee » Sun Jun 18, 2017 5:41 pm

AnnClare wrote:Also, MD Anderson wants to see me next Friday morning. This will be my 1st appointment / consult, so I am nervous. Yet I'm also relieved / thankful to actually have an appointment with them. They're a 5-hour drive away, AND, more importantly, I've heard great things about them, their approach, and treatment options. Fingers crossed & here's hoping (always!)


Yes good luck with MD Anderson, that's great that you have a place to stay. Let us know how it goes.

I believe you get the result back tomorrow regarding your PET scan. ALL THE BEST that it is good news.

Your fellow "ass kicker"

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!


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