Back in the fight

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macpudd
Posts: 120
Joined: Tue Jul 21, 2015 7:00 pm

Back in the fight

Postby macpudd » Wed Jan 17, 2018 8:58 am

Hello everybody, I had a seizure yesterday and ended up in A+E. Had a CT scan of my head this morning which showed a two centimetres growth on left side of brain. Doc said this could be spread from bowel, or a new primary which might not be malignant. Will be having more tests. All observations welcome.
Dx 10/13/2014 right hemicolectomy 10/15/2014 pT4b N0 M0
Folfox x12 from Dec 2014 to July 2015
01/16/18 tonic seizure hospital admission
01/17/18 ct and mri 2cm tumor on left side of brain
commenced anti epileptic and steroids and
insulin.
01/25/18 brain craniotomy 80% of tumour removed pathology says gbm4
6 weeks of rad and Temodar chemo and then 6 monthly cycles of Temodar
MRI in Oct no tumor
Mri Jan 2019 tumour growth Feb Pet scan tumour 6cm, no surgery, starting Avastin also Lomustine

[Ana & Alex]
Posts: 96
Joined: Tue Feb 14, 2017 5:14 pm
Location: Austria

Re: Back in the fight

Postby [Ana & Alex] » Wed Jan 17, 2018 10:05 am

Dear macpudd,

I don't know what to say. You had your treatment 4 years ago and I really hope that you aren't dealing with the C word anymore.

Anything that goes on on the brain is a challenge, from a surgical point of view. I hope that they figure out fast what is going on and that they have a treatment plan ready for you as soon as possible...

Thinking of you and sending my best wishes...

Try to live a day at a time,
Keep strong...

Ana
Dx @ 29 yo. Mum (2 y.o.) & Wife

12/2016: Rectal AdenoCa G2. CEA 4.3. RAS Wild. MSS. IIIB.
01 - 03/2017: 28 RTx + CHT 2,5 g/d Capecit.
03 - 06/2017: Suplemments and Cimetidine.
05/2017: TME/TAMIS + permanent Colostomy CEA 0.5
05/2017: ypT2N2aM0 (4/15), good cCR, limited pCR
06 - 8/2017: 4x CapOx 3,5 g/d (2x Oxi reduced to 80%)
09 -11/2017: 3x Capecit. monotherapy 4g/d
12/2017: Aspirin, Vit. D3, Curcumin, Multivitamin.

Pemba
Posts: 84
Joined: Thu Aug 24, 2017 7:52 am

Re: Back in the fight

Postby Pemba » Wed Jan 17, 2018 10:17 am

My friends mom suddenly got episodes where she couldn’t talk, the doctors found a golf ball size benign tumour in her brain. They said it could be a small childhood head trauma, that cause some scaring that had grown bigger over the years.

I really hope it’s nothing serious, and you’ll get answers soon, don’t loose hope !

Hugs !
Age: 26
2017: 15mm Tubulovillous adenoma- Low grade dysplasi.
Next scopy: original 2020 probably 2018-19

DarknessEmbraced
Posts: 3815
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: Back in the fight

Postby DarknessEmbraced » Wed Jan 17, 2018 11:08 am

I'm sorry you're going through this and hope it's nothing serious!*hugs*
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! :)

macpudd
Posts: 120
Joined: Tue Jul 21, 2015 7:00 pm

Re: Back in the fight

Postby macpudd » Wed Jan 17, 2018 7:23 pm

Thanks for the words of encouragement folks. Will be having MRI on head and full body CT Tomorrow. Doc has said will have a better plan tomorrow and he's meeting with oncology, neurosurgery and radio oncology. Feeling shellshocked tonight as I'm just over three years since diagnosis and was feeling good. Last October I had done training to facilitate the Stanford Cancer Thrive and Survive Program, and had just delivered the first session on Monday at my local cancer support centre. It was really uplifting to meet so many people who had battled through.
Dx 10/13/2014 right hemicolectomy 10/15/2014 pT4b N0 M0
Folfox x12 from Dec 2014 to July 2015
01/16/18 tonic seizure hospital admission
01/17/18 ct and mri 2cm tumor on left side of brain
commenced anti epileptic and steroids and
insulin.
01/25/18 brain craniotomy 80% of tumour removed pathology says gbm4
6 weeks of rad and Temodar chemo and then 6 monthly cycles of Temodar
MRI in Oct no tumor
Mri Jan 2019 tumour growth Feb Pet scan tumour 6cm, no surgery, starting Avastin also Lomustine

User avatar
Robino1
Posts: 463
Joined: Fri Aug 11, 2017 12:09 pm
Facebook Username: Robin.lawthers
Location: Florida

Re: Back in the fight

Postby Robino1 » Wed Jan 17, 2018 8:22 pm

Praying that it is not a return of cancer and that it is benign. Seriously, praying for the best.
At 54 2014 1st colonoscopy colon cancer detect
Colon resect margins clear. No chemo Stage II
2017
Distend abd, pain in intestines.
CT scan seeding & Ascites
Lap diag - cancer on the omentum
CEA 217; 219
FOLFOX started 6/17
CEA 202
8/29/17 CT melting of tumor.
Latest CT scan shows 2 new tumors and return of ascites.
CEA: (2017)9/30 -109; 10/12 -99.1; 11/4 -90.7; 11/30 -70.7; 12/14 -83.4; (2018)1/4 -73.3; 2/1-84.2; 89.2; 89.8; 88.5; 81.8: 93.5; 107; 119
BRAF V600e

User avatar
juliej
Posts: 3114
Joined: Thu Aug 05, 2010 12:59 pm

Re: Back in the fight

Postby juliej » Wed Jan 17, 2018 8:34 pm

macpudd wrote:Will be having MRI on head and full body CT Tomorrow. Doc has said will have a better plan tomorrow and he's meeting with oncology, neurosurgery and radio oncology.

Sending lots of prayers for your MRI and CT scan tomorrow! Hope it's benign and can be removed with a minimal amount of discomfort. Stay strong and let us know what you find out!

Hugs to you!
Juliej
Stage IVb, liver/lung mets 8/4/2010
Xelox+Avastin 8/18/10 to 10/21/2011
LAR, liver resec, HAI pump 11/2011
Adjuvant Irinotecan + FUDR
Double lung surgery + ileo reversal 2/2012
Adjuvant FUDR + Xeloda
VATS rt. lung 12/2012 - benign granuloma!
VATS left lung 11/2013
NED 11/22/13 to 12/18/2019, CEA<1

User avatar
mypinkheaven
Posts: 459
Joined: Fri May 20, 2016 4:29 pm
Facebook Username: Sally Cunningham
Contact:

Re: Back in the fight

Postby mypinkheaven » Wed Jan 17, 2018 10:01 pm

Best wishes to you macpudd!
MSS, KRAS Wild NRAS Mutated
9/2012 CRC IIB Lft Colectomy 0 lymph nodes 0 Chemo
10/2013 CT clear
11/15 CEA 2.7 to 4.6
11/15 Spread to uterus. Hysterectomy
2/16 Pelvic radiation 25, brachytherapy 3
4/16 - 6/16 Xeloda
6/16 CT Several lung nodules 5 mm
8/16 CT Nodules still present. Most stable. Some growth
11/16 Transfer to UCSD Moores
12/16 Folfox + Avastin failed
2/17 Folfiri + Erbitux
8/17 5FU+Erbitux No 5FU bolus
7/18 Spread to vagina
6/18 Folfiri + Avastin + Trametinib
6/18 CEA dropping

bitchslapped
Posts: 1538
Joined: Tue Sep 09, 2014 3:23 pm
Location: PNW/USA

Re: Back in the fight

Postby bitchslapped » Thu Jan 18, 2018 7:06 pm

Hey mac...I'll never forget my DH's onc saying "the issue is in the tissue". I sure hope the further tests are helpful in identifying what's most likely going on upstairs. Just seems even if benign it will need to be addressed as causing scary symptoms. Does sound like they are assembling a good team for you. Wish I could offer more in the way of information.
Keep us updated.

Best Wishes
BS
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, lvr, billiary tree fried x HAI
DM dx CC 85YO,CC,CHF,stroke,dementia,aphasia

AppleTree
Posts: 267
Joined: Fri Mar 18, 2016 8:16 am

Re: Back in the fight

Postby AppleTree » Thu Jan 18, 2018 10:07 pm

Hoping for the best for you. It is good to hear they are scheduling you in pronto. At least you will get results faster. I imagine you are a bundle of nerves right now. I know everyone says to wait to hear results before worrying, but that is hard...at least for me. Still...try to get some rest tonight.
Diag Feb 5, 2016 Age 45
3 cm tumor 5 cm from verge
Radiation + Xeloda pills - 3000mg 5x week
3/14 - 4/16 - 25 sessions
Shrank just over 50% L nodes 0/13
Remove rectum with temp Ileo 6/17
Reversal 7/20 due to infection
Acute hepatitis August. Chemo cancelled
June to September 2016 - 58 days in hospital

2017
6/16, MRI shadow in lung
Pet - 6.6mm Met in Upper R lobe
7/30 VAT surgery Mass General/Boston
8/24 port
8/30 - 4/28 Folfox. 12 rounds
2018
June CT shows new lung Mets.
July/Oct PETs...CLEAR!

macpudd
Posts: 120
Joined: Tue Jul 21, 2015 7:00 pm

Re: Back in the fight

Postby macpudd » Fri Jan 19, 2018 4:36 pm

Thanks everyone. Plan is to transfer me to a specialist neuro surgical department in a Dublin hospital to have growth removed. Docs feel it is most likely a met, but can not find any others so will approach this with curative intent which I think is very positive. They did say it's unusual to have brain met without lung or liver involved. Pathology will tell the full story. An now on anti epileptic and steroids and insulin because steroids are affecting blood sugars. Tired and going to bed soon.
Dx 10/13/2014 right hemicolectomy 10/15/2014 pT4b N0 M0
Folfox x12 from Dec 2014 to July 2015
01/16/18 tonic seizure hospital admission
01/17/18 ct and mri 2cm tumor on left side of brain
commenced anti epileptic and steroids and
insulin.
01/25/18 brain craniotomy 80% of tumour removed pathology says gbm4
6 weeks of rad and Temodar chemo and then 6 monthly cycles of Temodar
MRI in Oct no tumor
Mri Jan 2019 tumour growth Feb Pet scan tumour 6cm, no surgery, starting Avastin also Lomustine

User avatar
WriterGirl1969
Posts: 524
Joined: Sat Mar 05, 2016 3:48 pm
Location: Central NY

Re: Back in the fight

Postby WriterGirl1969 » Sun Jan 21, 2018 7:53 pm

macpudd wrote:Thanks everyone. Plan is to transfer me to a specialist neuro surgical department in a Dublin hospital to have growth removed. Docs feel it is most likely a met, but can not find any others so will approach this with curative intent which I think is very positive. They did say it's unusual to have brain met without lung or liver involved. Pathology will tell the full story. An now on anti epileptic and steroids and insulin because steroids are affecting blood sugars. Tired and going to bed soon.


Just wanted you to know that you were in my thoughts and prayers. In spite of the doctors feel I will pray they are mistaken and that it's not a met. Rest and take care of you.

Hugs,
Tracy
DX 3/4/2016 Colon Cancer; age 46 Mom of then 4-yr-old
Stage IIIB: T3N1M0
3/31/16 Surgery
4 to 10/2016: Xeloda Monotherapy
CEA: 10/16 0.56, 1/17 0.54
CT CLEAR: 3/6/17; 4/17/18; 4/16/19
NED 3 years
“If I can help somebody as I walk along, then my living shall not be in vain.”

User avatar
CRguy
Posts: 10472
Joined: Sun Feb 10, 2008 6:00 pm

Re: Back in the fight

Postby CRguy » Sun Jan 21, 2018 11:41 pm

Sometimes being on the Journey sucks shit

DO what you gotta do and we WILL be here for you ....
WORD !

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

macpudd
Posts: 120
Joined: Tue Jul 21, 2015 7:00 pm

Re: Back in the fight

Postby macpudd » Mon Jan 22, 2018 5:11 am

It's so uplifting that through this forum I am getting positive vibes from all over this beautiful blue planet for all its faults. Positive vibes back to you. Should have a date for surgery later today
Dx 10/13/2014 right hemicolectomy 10/15/2014 pT4b N0 M0
Folfox x12 from Dec 2014 to July 2015
01/16/18 tonic seizure hospital admission
01/17/18 ct and mri 2cm tumor on left side of brain
commenced anti epileptic and steroids and
insulin.
01/25/18 brain craniotomy 80% of tumour removed pathology says gbm4
6 weeks of rad and Temodar chemo and then 6 monthly cycles of Temodar
MRI in Oct no tumor
Mri Jan 2019 tumour growth Feb Pet scan tumour 6cm, no surgery, starting Avastin also Lomustine

TXLiz
Posts: 249
Joined: Thu Sep 22, 2016 3:31 pm

Re: Back in the fight

Postby TXLiz » Mon Jan 22, 2018 9:09 pm

Sorry for the new fight you must undertake, and my best wishes for you.
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
MSI-high
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


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