No more CC Yipee

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

No more CC Yipee

Postby macpudd » Wed Jul 10, 2019 6:23 am

Got my final 5 year ct results re cc this morning. Nothing on them except adhesions and ftty liver. Going forwad would have colonospy and ct every 3 years. It would have been great if not for the gbm4 being fly in the ointmeent. Anyway I hope it shows that very many people can get by the Cc.
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

stu
Posts: 1193
Joined: Sat Aug 17, 2013 5:46 pm

Re: No more CC Yipee

Postby stu » Wed Jul 10, 2019 9:10 am

Hi ,
That’s great news on the CC front . Now to get the chemo working on the GBM . Wishing you every success .
Take care,
Stu
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .

fumaros
Posts: 267
Joined: Sat Jul 02, 2016 10:26 pm
Location: Syracuse, NY
Contact:

Re: No more CC Yipee

Postby fumaros » Wed Jul 10, 2019 3:26 pm

Congratulations, one battle down. Wishing you victory with the other.
Diagnosed 4/8/16, age 29
Colectomy 4/20/16
Stage III, T4bN1 Tumor 7x6.5x2. Muscinous Adenocarcinoma with SRC features
2/16 lymph nodes
Stage IV, Peri mets 5/2019
CEA 4/14/16 - 16.8
CEA 6/2/16 - 1.9
CEA 6/17/16 - 0.87, 7/16 - 1.33, 12/16 - 1.14, 4/17 - 0.6, 7/17 - 0.5, 10/17 - 0.9, 3/19 -5.8, 4/19 -10
FOLFOX began 6/24/16 - 11/25/16, FOLFIRI - 5/10/19
10 round FOLFOX, 2 round 5-FU & Leucovorin, 1 round FOLFIRI
MRI & CT 8/16 - NED, CT 12/16 - 10/17 - NED

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

Re: No more CC Yipee

Postby macpudd » Thu Jul 11, 2019 6:34 am

Thanks folks,
It was gret to beat the CC, but the gbm is a tougher one for me. I was told by the onc in March that prognois ewas i should have 3months but definitrly not 12months. The chemo is to try and maintain quality of life but will not extend overall survival. Mood bad today am so tired its just lieing round all day. My poor wife and kids are so good i wish things would hurry up and i wouldnt be such a burden to them, i know i shouldnt say it but some days its how i feel.
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

stu
Posts: 1193
Joined: Sat Aug 17, 2013 5:46 pm

Re: No more CC Yipee

Postby stu » Thu Jul 11, 2019 11:59 am

Please feel free to say how you feel here . I think it’s important to have somewhere where you can speak from the heart . I don’t blame you for having down days when your processing not only treatment but the whole mortality issue .
All we can be is here for you but be assured we are here for you in any way we can be .

I hope the rest of the day goes a bit easier on you .

I like the straight talking of the Irish . I have my very own wee Irish dad . He always keeps life real .

Hold on tight ,
Stu
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .

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

Re: No more CC Yipee

Postby macpudd » Sat Jul 13, 2019 10:35 pm

stu wrote:Please feel free to say how you feel here . I think it’s important to have somewhere where you can speak from the heart . I don’t blame you for having down days when your processing not only treatment but the whole mortality issue .
All we can be is here for you but be assured we are here for you in any way we can be .

I hope the rest of the day goes a bit easier on you .

I like the straight talking of the Irish . I have my very own wee Irish dad . He always keeps life real .

Hold on tight ,
Stu

Thanks Stu, am up and down like a yoyo this while, sleep a lot but can be awake at night and sleep on day, tiredness is extreme most of the tome. Had a good chat with my wife and family today. They did tell me that there ia times when i make mistakes and dont seem to be aware of what they say and i answer as if i am not aware. This is worse on the days that i have seizures. Its good that they tell me, and i know they work so hard to help me. My kids stayed with me all day today and let my wife have a whole day to herself away, it definitely made her seem a bit more relaxed this evening.
Good to hear abot your irish Dad, what county is he from, mine was from county Mayo. Thanks again for your help and positivity Stu, and all the other people here to.
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

DarknessEmbraced
Posts: 3348
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: No more CC Yipee

Postby DarknessEmbraced » Sun Jul 14, 2019 9:51 am

Congratulations! :D This year's scans and my colonoscopy will be 5 years for me. I hope I get good news too. :)
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

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

Re: No more CC Yipee

Postby macpudd » Sun Jul 14, 2019 10:28 am

DarknessEmbraced wrote:Congratulations! :D This year's scans and my colonoscopy will be 5 years for me. I hope I get good news too. :)

It will be good news for you to hopefully, it is far more likely once we get by 3 years. Good luck to you and let us know when you hear :D
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

Eleda
Posts: 325
Joined: Thu Dec 28, 2017 2:28 am
Facebook Username: adele Morgan
Location: Ireland

Re: No more CC Yipee

Postby Eleda » Sun Jul 14, 2019 12:43 pm

Mc pudd
First of all !!!!!!
Did u get the bell???

Ur wife will have plenty of time on her own when ur gone
Spend every minute with her,,,,,,,,,,
As u would do!!!!!!!

Do something fun if ur up to it with ur kids......m and leave them with a fun memory

Easy for me to say I'm not in ur position
But I'm only saying from the heart,,,,, :(

Ur Celtic friend
Adele x
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: 120
Joined: Tue Jul 21, 2015 7:00 pm

Re: No more CC Yipee

Postby macpudd » Sun Jul 14, 2019 1:07 pm

Eleda wrote:Mc pudd
First of all !!!!!!
Did u get the bell???

Ur wife will have plenty of time on her own when ur gone
Spend every minute with her,,,,,,,,,,
As u would do!!!!!!!

Do something fun if ur up to it with ur kids......m and leave them with a fun memory

Easy for me to say I'm not in ur position
But I'm only saying from the heart,,,,, :(

Ur Celtic friend
Adele x

Hi Adele we have been having good fun today over what I can get them to do for me when I get the bell. Ive been telling all sots of outlandish things they wiil have to do when i ring my new bell :D. My poor wife never complains about a thing it was me that thought a day away on her own would give her a break from me. We are all heading away in 3 weeks if i am fit for it, in Sligo, as i was to told not to fly. Hope your having a good time to Adele. Sunshine beautful and bbq and family here today lifted all oir spirits and shortly going to even have 1 can of Guinness :D
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

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

Re: No more CC Yipee

Postby macpudd » Fri Jul 19, 2019 9:38 am

No avastin today not enough platlets :( will try again in 2 weeks also deu lomustine in 2 weeks as well.
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

Eleda
Posts: 325
Joined: Thu Dec 28, 2017 2:28 am
Facebook Username: adele Morgan
Location: Ireland

Re: No more CC Yipee

Postby Eleda » Fri Jul 19, 2019 10:17 am

Guinness give u shits mc pudd lol but apparently good for the blood ( after giving birth an all )
Might as well have 5 as have one
Enjoy lol
Your Celtic Friend

Adele x
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

Eleda
Posts: 325
Joined: Thu Dec 28, 2017 2:28 am
Facebook Username: adele Morgan
Location: Ireland

Re: No more CC Yipee

Postby Eleda » Fri Jul 19, 2019 10:18 am

Guinness will give u shits mc pudd ( but you know that ) lol but apparently good for the blood ( after giving birth an all that :roll: )
Might as well have 5 as have one
Enjoy lol
Your Celtic Friend

Adele x
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: 120
Joined: Tue Jul 21, 2015 7:00 pm

Re: No more CC Yipee

Postby macpudd » Fri Jul 19, 2019 1:32 pm

23inch less of a colon since my op so have crapped like a elenphant since. I always loved beer bit it leaves me with an awful hangover now with my bad brain, so 1 can is about as much as i can manage :D

I see a whale in the south sea, drinking my soul away,
Oh what limb rending pains ifeel ! Thy fire and my frost
Mingle in howling pains, in furrows by thy lighting rent.
This is Eternal Death, and this the torment long fortold.

Its a crap poem but is sums up how i feel about not drinking load. I am sure i should be annoyed more about not getting avastin :shock:
I am only joking about this just in casr anyone thinks i am serious, actually feel quite good this evening :D
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

stu
Posts: 1193
Joined: Sat Aug 17, 2013 5:46 pm

Re: No more CC Yipee

Postby stu » Mon Jul 22, 2019 4:04 pm

Hi ,
How are you getting on this week . We have a wee heat wave !! At my caravan enjoying a little kayak .
Hope your spirits are up .
Take care ,
Stu
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .


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