3C Recently Diagnosed - need support

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marshmallowjones
Posts: 9
Joined: Thu Jan 03, 2019 9:23 am
Facebook Username: Regina Kennedy

Re: 3C Recently Diagnosed - need support

Postby marshmallowjones » Tue Jan 08, 2019 10:21 am

Ron50 wrote:Hi Marshmallowjones,
Welcome aboard. I was dxed with stage 3c colon cancer into 6 of 13 nodes when I was 48. It was very aggressive and my surgeon told me not to expect more than three years. I told him don't worry I don't die of cancer. I have no idea what will get me but it won't be cancer. I had 48 sessions of a very old chemo regime which is no longer used because of sometimes fatal side effects. On the 22nd of this month I reach 21 years ,still cancer free. Wishing you good health and a cancer free future. Ron.


Wow - encouraging and yours was indeed a rough battle. My good friend who was there for a colonscopy and serious bad news news delivery from the Gastro screamed "this aint the way you die!" on the way home for the hours long visit. I agreed, it has to be something more interesting that this.

marshmallowjones
Posts: 9
Joined: Thu Jan 03, 2019 9:23 am
Facebook Username: Regina Kennedy

Re: 3C Recently Diagnosed - need support

Postby marshmallowjones » Tue Jan 08, 2019 10:34 am

LPL wrote:Marchmellojones,
You wrote:
My ONC is saying that we don't look/scan until 1 year which I'll ask about.

Yes ! Do ask about that because it doesn’t sound ‘normal’. My DH has had scans evey 3 month, then every 4 and then 5. Now is the first time it has gone 6 month. My husband was diagonosed in March 2016.
All the best to you!


We met yesterday and the 1st scan will be done at the conclusion of the last chemo session #8. The only that could be happening is that micro metastases are still floating around (fingers crossed - NOT!) The CEA comes into play - whatever that is. I'm feeling better since I wrote this post. I just didn't want to be glossing over the seriousness of my situation.

Excited about dropping Neulasta this treatment and going for 3 shots of Neupegen instead. I'm sure the spelling is wrong. Neulasta is way too tough on me - Claritin and all.

Koreysue
Posts: 101
Joined: Mon Apr 30, 2018 2:36 pm

Re: 3C Recently Diagnosed - need support

Postby Koreysue » Tue Jan 08, 2019 1:06 pm

Hello,
Sorry to hear you have a reason to be on this forum, but it is a good spot for support.
For me the effects did get worse with each treatment cycle, but I tried to walk each day and stay on top of the nausea with meds. Rest when you need to. Sleep sleep sleep.
Lee is such a ray of hope with how well he has done. I know it is hard, but being positive like you are will help more than worrying will. I have to tell myself this daily- over and over, so I know it is easier said than done.
Take care,
Korey
Diagnosed: June 2017 stage 3 colon cancer
Sigmoid colon, 2 nodes affected
CEA at diagnosis: 6
Sigmoid Colectomy and folfox (chemo complete January 31, 2018)
CEA 4/2018: 2.4
CEA 7/2018: 3.7
Colonoscopy 8/2018 clean
PET scan 8/20/18 clear (cea rise a mystery for now, doc said maybe all the smoke in my town from forest fires)
CEA 11/2018: 3.8
CEA 2/2019: 3.2
CT clear 6/18/2019 / CEA : 3.4

Nordy1
Posts: 33
Joined: Tue Oct 02, 2018 11:45 pm

Re: 3C Recently Diagnosed - need support

Postby Nordy1 » Sun Feb 10, 2019 8:24 am

Patty17 wrote:Congratulations on four down, MJ! Way to go!

I would equate FOLFOX doses 4 - 8 like a series of blind dates: each one a little different, some good qualities, some bad. Don’t be surprised if some side effects show up for one cycle and disappear for another. There is a cumulative effect for tiredness and some of the bloodwork numbers continue to take a hit. Accept the help knowing it’s going to get you on your feet faster once #8 is in the history books.

You’re doing everything you can to beat this. Control what you control, let the rest go. So, so hard to let go and not over-analyze what’s on the internet. I am guilty of it myself — it just robs the present of happiness.

You got this!



Love this bit of wisdom and humor! particularly "I would equate FOLFOX doses 4 - 8 like a series of blind dates: each one a little different, some good qualities, some bad" :D

take care of yourselves
Nordy
jan 2018 emergency room via ambulance rectal bleeding event
dx Feb 2018 sigmoid adenocarcinoma 2.5 cm, 3 small extranodal foci resected march 2018
stage 3A T1 n1c
multiple indeterminent nodes in liver, lungs and kidney
11 rounds folfox with oxyplatin stopped with full nephropathy of hands and feet
currently waiting next scan in Feb. 2019


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