Back in the fight

Please feel free to read, share your thoughts, your stories and connect with others!
Lee
Posts: 5680
Joined: Sun Apr 16, 2006 4:09 pm

Re: Back in the fight

Postby Lee » Sat Feb 03, 2018 11:07 pm

Well Sh*t!!!

I am sorry to read your latest turn of events. Yes check out possible trials. I've been waiting for the other shoes to drop in my body. I am very much aware, with all they threw at me, I will most likely be looking at a 2nd cancer in the not to distant future.

Take care of yourself,

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!

Kiajerome
Posts: 1
Joined: Wed Feb 07, 2018 4:02 am

Re: Back in the fight

Postby Kiajerome » Wed Feb 07, 2018 4:06 am

Hi macpudd,
From your words - "two centimeters growth on left side of brain"
Are you suffering from brain tumour.

Rikimaroo
Posts: 141
Joined: Tue Dec 20, 2016 8:48 pm

Re: Back in the fight

Postby Rikimaroo » Wed Feb 07, 2018 1:52 pm

Sorry such sad news.

Lee don't think like that. no you will not get another cancer in your lifetime. You have beating it.

Cancer sucks no matter what and 52 such a young age still. Any holistic approaches? just wondering if chemo and radiation is worth it at this point and maybe trying alternative treatments?

May god heal you!!
Diagnosed at 38 y/o male, 3 kids 7,9,14 - Now 39.
RC T3N1M0
Chemo Rad, CCR - W&W 5/2017
Local Recurrence, discuss options 11/26/2017
CT Scan 11/2017 Liver Met 5.5cm Stable, Stage IV
Port Scheduled for 12/15/2017, folfox/oxapalatin + avastin starts on the 12/20/2017
Blood Clot in Neck 1/16/2018, stop avastin, continue FolFox
TME/Liver Resect 4/3/2018
Biopsy Results 0/8 Lymph nodes clear, margins not clear, CEA now .8,
Chemo Finish 8/15/2018
Reversal October 17th 2018

macpudd
Posts: 75
Joined: Tue Jul 21, 2015 7:00 pm

Re: Back in the fight

Postby macpudd » Wed Feb 07, 2018 5:02 pm

Lee wrote:Well Sh*t!!!

I am sorry to read your latest turn of events. Yes check out possible trials. I've been waiting for the other shoes to drop in my body. I am very much aware, with all they threw at me, I will most likely be looking at a 2nd cancer in the not to distant future.

Take care of yourself,

Lee

Lee I really hope there is nothing bad in your future, I asked the docs could the folfox have caused what happened me and they said there is no evidence of Folfox causing brain tumours. Please try not to worry about what might happen.
Dx 10/13/2014 right hemicolectomy 10/15/2014 pT4b N0 M0
Folfox x12 from Dec 2014 to July 2015
cea pre surgery 1.6 after .6
01/16/18 tonic seizure hospital admission
01/17/18 ct and mri 2cm met on left side of brain
commenced anti epileptic and steroids and
insulin.
01/25/18 brain surgery 80% of tumour removed
due to have radiation and chemo starting in 3/4 weeks

macpudd
Posts: 75
Joined: Tue Jul 21, 2015 7:00 pm

Re: Back in the fight

Postby macpudd » Wed Feb 07, 2018 5:09 pm

Kiajerome wrote:Hi macpudd,
From your words - "two centimeters growth on left side of brain"
Are you suffering from brain tumour.

Yes Kiajerome, I have the remains of a brain tumour, 70/80% of it was removed, but they could not get the rest of it out without leaving me blind and damaging my ability to speak. The pathology report has shown that it is nothing to do with colon cancer, it is a Glioblastoma Multiforme grade 4 which is an aggressive form of cancer which only affects the brain.
Dx 10/13/2014 right hemicolectomy 10/15/2014 pT4b N0 M0
Folfox x12 from Dec 2014 to July 2015
cea pre surgery 1.6 after .6
01/16/18 tonic seizure hospital admission
01/17/18 ct and mri 2cm met on left side of brain
commenced anti epileptic and steroids and
insulin.
01/25/18 brain surgery 80% of tumour removed
due to have radiation and chemo starting in 3/4 weeks

macpudd
Posts: 75
Joined: Tue Jul 21, 2015 7:00 pm

Re: Back in the fight

Postby macpudd » Wed Feb 07, 2018 5:23 pm

Rikimaroo wrote:Sorry such sad news.

Lee don't think like that. no you will not get another cancer in your lifetime. You have beating it.

Cancer sucks no matter what and 52 such a young age still. Any holistic approaches? just wondering if chemo and radiation is worth it at this point and maybe trying alternative treatments?

May god heal you!!

I have tried to research any alternative treatments but the only thing I can find which has some scientific evidence is the Stupp protocol treatment, which is exactly what my doctors have offered me. While there is some downsides to the radiation and temozolomide chemo, it appears to be the only treatment that can prolong my life, median survival being 14/16 months, while if I just have radiation or chemo median survival is 12 months. I have being told today that I cannot drive my car or ride my motorcycle because I will most likely have more seizures, I am gutted about that as I really liked riding my bike and thought I would be able to do it for a few more months at least. On a positive note my head is healing up well and I am able to walk for two miles daily and hopefully can do more next week :D
Dx 10/13/2014 right hemicolectomy 10/15/2014 pT4b N0 M0
Folfox x12 from Dec 2014 to July 2015
cea pre surgery 1.6 after .6
01/16/18 tonic seizure hospital admission
01/17/18 ct and mri 2cm met on left side of brain
commenced anti epileptic and steroids and
insulin.
01/25/18 brain surgery 80% of tumour removed
due to have radiation and chemo starting in 3/4 weeks

Eleda
Posts: 174
Joined: Thu Dec 28, 2017 2:28 am
Facebook Username: adele Morgan
Location: Ireland

Re: Back in the fight

Postby Eleda » Wed Feb 07, 2018 5:50 pm

Hi mac
Have you looked into CBD oil and or hight dose iv vitiman c in conjunction with ur medical treatment????
Neither will do u any harm and many studies have shown effective,
I hope ur trying to enjoy every day that u have
Ur celtic friend
ADELE
SWF, 47
Mom to 3 sons 6/8/12
Dec4th 2017 colonoscopy for minor intermittent rectal bleeding during Summer
CEA 4.4
DX T3 L3C M0 2.5/3 cm above AV.
JAN 3RD started 1650mg Zelda 2xday, with 28 radiation
Did tagamet 800mg daily and 75mg IV VIT C WEEKLY UNTIL SURGERY and
Tumor reduce by 80% 1 LN still remaining
TATME May10th, temp illeostomy
10/07/2018 CEA 3
MMR INTACT
Began FOLFOX July 10th
24/08/2018 Allergic reaction so next infusion lucovorin and 5fu
CEA 4
Second attempt with oxi aug 12th

macpudd
Posts: 75
Joined: Tue Jul 21, 2015 7:00 pm

Re: Back in the fight

Postby macpudd » Wed Feb 07, 2018 6:50 pm

Eleda wrote:Hi mac
Have you looked into CBD oil and or hight dose iv vitiman c in conjunction with ur medical treatment????
Neither will do u any harm and many studies have shown effective,
I hope ur trying to enjoy every day that u have
Ur celtic friend
ADELE


Hi Adele, good to hear from you, I will ask my doc about both alternatives next week. I know there is clinical trials in the UK about the use of Sativex (cannabis based) and Temozolmide chemo which are still ongoing. Hope things are going well for you, I am doing my best to be positive. We have sold our house in the country side and are moving to a nearby town, it's due to happen on the 22nd Feb and I am starting radiation and chemo on the 21st Feb, so lots of packing to do.
Dx 10/13/2014 right hemicolectomy 10/15/2014 pT4b N0 M0
Folfox x12 from Dec 2014 to July 2015
cea pre surgery 1.6 after .6
01/16/18 tonic seizure hospital admission
01/17/18 ct and mri 2cm met on left side of brain
commenced anti epileptic and steroids and
insulin.
01/25/18 brain surgery 80% of tumour removed
due to have radiation and chemo starting in 3/4 weeks

AussieAssCancer
Posts: 248
Joined: Sat May 21, 2016 10:16 am

Re: Back in the fight

Postby AussieAssCancer » Wed Feb 07, 2018 8:08 pm

Good to hear you’re up and about MAC! Bummer about the bike/car though :x Also good that the radiation and chemo is not too far away either. Keep on keeping on mate!

AAC
Dx Oct '15 w/ Stage 3c RC
Nov '15 - Jan '16: 3x FOLFOX and 5wks Chemoradiation w/ Xeloda
March '16: ULAR w/ temp ileostomy
Complete pathological response incl 0/12 nodes
April '16: Clear CT (NED)
May - Aug '16: 9x FOLFOX (dropped Oxaliplatin for final Rd due to neuropathy)
Dec '16: Clear CT (NED)
Feb '17: Ileostomy reversed
Aug '17: Clear CT (NED)
Feb ‘18: Clear CT (NED)

Blog: kickingrectalcancerintheassblog
https://kickingrectalcancerintheassblog.wordpress.com/

Lee
Posts: 5680
Joined: Sun Apr 16, 2006 4:09 pm

Re: Back in the fight

Postby Lee » Thu Feb 08, 2018 11:51 am

macpudd wrote:Lee I really hope there is nothing bad in your future, I asked the docs could the folfox have caused what happened me and they said there is no evidence of Folfox causing brain tumours. Please try not to worry about what might happen.


Thank you, You will be in my thoughts and prayers that they throw this new cancer into the next universe.

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!

Caat55
Posts: 528
Joined: Sat Dec 23, 2017 6:01 pm

Re: Back in the fight

Postby Caat55 » Thu Feb 08, 2018 12:34 pm

Macpuud,
One of my friends grows cannabis for medical use. He sells to legal manufacturers. He mentioned something called Rick Simpson oil to me but it didn't seem relevant to me. You might check it out. I ended up using some charlottes web for pain after radiation, also used Tylenol. Don't know what worked but controlled pain. I am no expert so don't take anything I say as bible but check it out and speak to your doctor.
S
55 y.o. Female
Dx 9/26/17 RC Stage 3
Completed 33 rad. tx, xeolda 12/8/17
MRI and PET 1/18 sign. regression
Surgery 1/31/18 Ileostomy, clean margins, no lymph node involved
Port 3/1/2018
Oxaliplatin and Xeloda start 3/22/18
Last Oxaliplatin 7/5/18, 5 rounds

MissMolly
Posts: 560
Joined: Wed Jun 03, 2015 4:33 pm
Location: Portland, Ore

Re: Back in the fight

Postby MissMolly » Thu Feb 08, 2018 1:14 pm

Macpudd:
Reading about your brain tumor diagnosis figuratively hit me directly in the gut.

My brother had a similar diagnosis of a Grade1V Glioblastoma multiforma when he was 16 years of age. The tumor was an infiltrating spider web involving his right temporal-partial lobe (and motor cortex and speech center). This was in 1984. He underwent surgery with a partial resection of the tumor mass and was given 6 months to live. Neither chemotherapy nor radiation was available, as the science had not yet found way for agents to cross the blood brain barrier.

My brother is alive today, a miracle in his own right. He is now 61 years of age and, while showing some neurological compromise, is doing well and living independently. His amazing survival is due to the intrinsic ability of his own immune system that was able to identify the surface proteins of his cancer and amount a successful attack. My brother’s immune system intuitively knew what science researchers are now just beginning to understand of the immune system and it’s role in challenging cancers. I share this as a ray of hope. Miracles do happen.

You have my most sincere of prayer for your well-being,
Karen
Dear friend to Bella Piazza, former Colon Club member (NWGirl).
I have a permanent ileostomy and offer advice on living with an ostomy - in loving remembrance of Bella
I am on Palliative Care for broad endocrine failure + Addison's disease + osteonecrosis of both hips/jaw + immunosuppression. I live a simple life due to frail health.

macpudd
Posts: 75
Joined: Tue Jul 21, 2015 7:00 pm

Re: Back in the fight

Postby macpudd » Thu Feb 08, 2018 5:31 pm

MissMolly wrote:Macpudd:
Reading about your brain tumor diagnosis figuratively hit me directly in the gut.

My brother had a similar diagnosis of a Grade1V Glioblastoma multiforma when he was 16 years of age. The tumor was an infiltrating spider web involving his right temporal-partial lobe (and motor cortex and speech center). This was in 1984. He underwent surgery with a partial resection of the tumor mass and was given 6 months to live. Neither chemotherapy nor radiation was available, as the science had not yet found way for agents to cross the blood brain barrier.

My brother is alive today, a miracle in his own right. He is now 61 years of age and, while showing some neurological compromise, is doing well and living independently. His amazing survival is due to the intrinsic ability of his own immune system that was able to identify the surface proteins of his cancer and amount a successful attack. My brother’s immune system intuitively knew what science researchers are now just beginning to understand of the immune system and it’s role in challenging cancers. I share this as a ray of hope. Miracles do happen.

You have my most sincere of prayer for your well-being,
Karen

I am so glad your brother is alive and relatively well Karen. It is also encouraging for me to hear that some people can survive this. I have seen your response to many people here Karen and I must say your attitude and messages are so inspiring. I am aware that you have very challenging health conditions but your positivity and calm manner is something which I have tried to adapt for my own approaches to what is happening myself. Many thanks Karen.
Dx 10/13/2014 right hemicolectomy 10/15/2014 pT4b N0 M0
Folfox x12 from Dec 2014 to July 2015
cea pre surgery 1.6 after .6
01/16/18 tonic seizure hospital admission
01/17/18 ct and mri 2cm met on left side of brain
commenced anti epileptic and steroids and
insulin.
01/25/18 brain surgery 80% of tumour removed
due to have radiation and chemo starting in 3/4 weeks

User avatar
CRguy
Posts: 9616
Joined: Sun Feb 10, 2008 6:00 pm

Re: Back in the fight

Postby CRguy » Fri Feb 09, 2018 12:48 am

Hey buddy
I just came across this latest research initiative from our local cancer agency, specifically directed at GBM

http://www.nxtbook.com/nxtbooks/manifes ... ex.php#/10

There are new developments emerging all the time, so keep your docs in the loop about what we find out here !

Best wishes
CRguy
Caregiver x 3
Stage IV A rectal cancer/lung met
11 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

macpudd
Posts: 75
Joined: Tue Jul 21, 2015 7:00 pm

Re: Back in the fight

Postby macpudd » Fri Feb 09, 2018 4:22 am

CRguy wrote:Hey buddy
I just came across this latest research initiative from our local cancer agency, specifically directed at GBM

http://www.nxtbook.com/nxtbooks/manifes ... ex.php#/10

There are new developments emerging all the time, so keep your docs in the loop about what we find out here !

Best wishes
CRguy

Thanks CRguy, that mesh application appears to be a very good idea. The BC cancer foundation newsletter is a good read. Will mention that mesh development to my oncologist. Thanks again :D
Dx 10/13/2014 right hemicolectomy 10/15/2014 pT4b N0 M0
Folfox x12 from Dec 2014 to July 2015
cea pre surgery 1.6 after .6
01/16/18 tonic seizure hospital admission
01/17/18 ct and mri 2cm met on left side of brain
commenced anti epileptic and steroids and
insulin.
01/25/18 brain surgery 80% of tumour removed
due to have radiation and chemo starting in 3/4 weeks


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



Who is online

Users browsing this forum: Atoq, Nohogirl and 47 guests