Stage IV 31 Year Old Male currently Fighting

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jumpman50512
Posts: 2
Joined: Thu Jan 10, 2019 10:36 pm

Stage IV 31 Year Old Male currently Fighting

Postby jumpman50512 » Thu Jan 10, 2019 10:47 pm

Hello everyone just wondering what is your experience with treatment and any survivors that are cancer free.
Currently I have been fighting stage IV.
The cancer had spread to my liver. So i had 4 rounds of chemo at first and erbitux i broke out badly with i mean horrible it was on my face arms back neck and little on my belly it was huge. My tumor on my liver was 3cm at first and then after 4 rounds shrunk to 2cm.
No mutation on my tumor and it does not run in my family in fact i am the first on both sides my grandma who is 90 years old does have skin cancer but shes been like that for a few years.
I have had two surgeries. One surgery is Liver my first they removed 25% of my liver. Right love of my liver to be exact. It was successful doctor was super happy with the results he said the rest look perfect and pathology reported the little extra they took was cancer free.
After that i got radiation and chemo pills for i think month and a half somewere around there i think.
Next up was my colon surgery. My doctor used a robot to remove it and i think she remove 14cm of the colon sorry im on chemo now and cant think that well sometimes.
The report came back and they removed 14 lymph nodes also. All lymph nodes came negative for cancer she was super happy for that. Now i poop out of a bag. Currently taking oxyloplatin once a month and chemo pills 4000mg for 21 days and one week break. I have to do this for four months. after that a ct scan and pet scan and i pray i am cancer free. Just wondering if anyone has had a close regiment and been cancer free with no recurrence. Chemo is though but i am pushing through. How do you guys stay positive during the whole process?
Thanks everyone

stu
Posts: 1137
Joined: Sat Aug 17, 2013 5:46 pm

Re: Stage IV 31 Year Old Male currently Fighting

Postby stu » Fri Jan 11, 2019 2:51 am

Hi Welcome to the forum .
I have been hanging around here for nine years . My mum had a lot more Mets in her liver than you . The stats are much better for only one met to a distant organ than someone like my mum. There are lots of people who have had your experience and not had further recurrences . Infact my mum’s very first surgeon had one of his very first liver surgery patients still doing well twenty years later with no recurrence.

You don’t have to be positive all the time . From an observation point of view I think it is a total assault on your body and mind and you are very positive indeed just to endure all that .
You are coming through well especially with no lymph node involvement . My mum was the same . It will take time to gain confidence and put distance between you and this episode.
But the good news is that even as a family I can assure you it has faded into the background . We have been masters at compartmentalising . Once a good scan is in we did not think about it till the next one was on the horizon. Then it would surface for a bit .
I can think of many people here who had a similar path to you but they eventually stop posting and you know they are balanced out again . Sometimes they pop back on and share good news .
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 .

Wonderfullymade
Posts: 140
Joined: Tue Jan 12, 2016 4:33 pm

Re: Stage IV 31 Year Old Male currently Fighting

Postby Wonderfullymade » Fri Jan 11, 2019 4:44 pm

Hi jumpman,
I am sorry you have to be here, but if you must be this is a good group to support you through it!
I am one of those who doesn’t post much, but I do look in from time to time.
In March it will be 4 years since I was diagnosed stage 4 and wasnt really given a great deal of hope for survival. I changed my Dr and went to Mayo In Rochester MN. Was a pretty good choice as I am here to tell you that!
I went through the first line of treatment and then some more,see my signature for the whole story.
I want to tell you the fact that you have the rash is a good sign. Generally means the erbitux drug is working.
Have you been tested for your msh status? That is a game changer around here, and if you are mss you should read the thread from jake&katies mom I think. She is having great results well.
Hang on to the good stuff,but also give yourself a chance to mourn. My thoughts are with you as you find your way through this!
Wonderfullymade
Eta: how I survive...one day at a time, each battle as it comes
DX 3/2015 53
Stage IVa CC w/liver met
BRAF/KRAS wild type MSI-High (MLH1, PMS2) not Lynch
Folfox 3 cycles
5/2015 ER for subtotal colectomomy due to perforated colon, ovary removed
Folfuri/Pantiumumab 5 cycles
8/2015 liver resection, gallbladder removed and new LN
10/2015 CT scan new nodes
10/2015 Pembro started CEA 2.2
5/2017 stable lung things, coltis, lymph nodes stable cea 1/2017 1.1
9/2017 NED CEA 1.1 ( stopped Pembro)
2/2019 ER for DVT/ PE
2/2019 clean CT (NED) CEA 1.1

jumpman50512
Posts: 2
Joined: Thu Jan 10, 2019 10:36 pm

Re: Stage IV 31 Year Old Male currently Fighting

Postby jumpman50512 » Sat Jan 12, 2019 12:18 am

Hello everyone

thank you for all the support i really do appreciate it. My CEA is also very low. At first i was tested for a genetic mutation on my dna but nothing all they said i came from some bloodline that was jewish and they have a 50% higher chance to have colorectal cancer. But i am mexican lol. Which was weird result. My doctor who is a local doctor was recommended from MD Anderson he is considered one of the best. I am almost done with treatment pending a ct scan and pet scan if everything comes out good i am done hopefully no re currence

stu
Posts: 1137
Joined: Sat Aug 17, 2013 5:46 pm

Re: Stage IV 31 Year Old Male currently Fighting

Postby stu » Sat Jan 12, 2019 8:02 am

We are seeing s big rise in the UK too in your age group. Totally unheard of before and a lot of work is going in to make GP’s more aware of the rise to allow better detection . Just like you most are without a family history or genetic mutation . No idea why !!!
However it’s looking good for you and that’s the main thing .
It will take time to readjust and get hospitals back out your life but then it will be on to living a full life .
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 .

User avatar
betsydoglover
Posts: 967
Joined: Mon Aug 14, 2006 2:31 pm
Facebook Username: Betsy Lindh Williams
Location: Maryland - outside DC

Re: Stage IV 31 Year Old Male currently Fighting

Postby betsydoglover » Sat Jan 12, 2019 12:28 pm

I am so sorry that you have to be here, but it a great support board and also a wealth of information.

I also was diagnosed Stage 4 - sigmoid tumor and liver met. You can see my treatments below. My CEA, by the way has never been higher than 0.9 so clearly it is not a marker for me and it sounds like it is not a good one for you either. I too had no family history. Unlike you I am KRAS mutant which just means that I cant take Erbitux / Vectibix.

Just wanted to share this with you - diagnosed 5/05, sigmoid colectomy, NED after 6 rounds of chemo by 12/05. One recurrence in lung in 2008 - VATS removal of lung met, NED since 4/09.

Please know that this can be beaten.

Take care,
Betsy
diag. Stage IV, 5/05, liver met
lap sigmoid colectomy, 6/05
6 cycles Xeloda/oxaliplatin/Avastin (NED after 2)
11/08 9x13mm right lower lobe lung nodule; removed via VATS 4/09
NED
6 cycles Xeloda + Avastin
Avastin only 10/09-5/11
Still NED 06/18


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