Recurrence - The Longest Month

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fumaros
Posts: 237
Joined: Sat Jul 02, 2016 10:26 pm
Location: Syracuse, NY
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Recurrence - The Longest Month

Postby fumaros » Fri May 10, 2019 9:36 am

I am writing this siting in the infusion chair. I am struggling to organize my thoughts as my fingers keep slipping off the keys as I am pumped full of some new and some old drugs.
It had been almost 3 years since diagnosis. I had gone from scans every three months to scans every 6 months. Then the second 6 month scan found the tumor on my kidney. My oncologist, perhaps, looked more stunned than I did. The onc referred me to a urologist.
Somehow, I did not think that was a sufficient response to my worst nightmare coming to life. So after two visits to MSKCC and multiple visits to Dana Faber, i/we were almost convinced that we could shrink the tumor with chemo and have a simple surgery to remove the left over tumor on the kidney. Then I had a PET Scan and my world came undone all over again. Multiple areas scattered over my retroperitoneum/bowel/pelvis lit up.
The plan is to take it a day at a time. Everytool is being kept in the bucket including HIPEC. But will start with chemo and see what happens.
Wish me luck everyone.
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

stu
Posts: 1065
Joined: Sat Aug 17, 2013 5:46 pm

Re: Recurrence - The Longest Month

Postby stu » Fri May 10, 2019 9:55 am

Hi ,

Hope your infusion is going as smoothly as possible . I am sad for you but also know just how powerful chemo can be so hope it has started already dealing with the spread .
Wishing you every success with your treatment .
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 .

Punky44
Posts: 281
Joined: Mon Oct 01, 2018 4:29 pm

Re: Recurrence - The Longest Month

Postby Punky44 » Fri May 10, 2019 10:34 am

So sorry you are dealing with this again. Stay strong. Best of luck to you.
Caregiver to my amazing mom (68)
10/1/18 DX with rectal cancer; CEA 17 at diagnosis
MRI/CT/PET puts staging at T3N2M0
Total neoadjuvant therapy:
8 rounds Folfox 11/5/18 - 2/11/19
Short course radiation 3/14/19 - 3/20/19
Robotically assisted laparoscopic LAR 3/21/19
Pathology report says yT2N0M0 with 0/38 nodes
CEA 4/23: 2.1

Me: 34, first colonoscopy 11/16/18—normal! Come back in 5 years.

fumaros
Posts: 237
Joined: Sat Jul 02, 2016 10:26 pm
Location: Syracuse, NY
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Re: Recurrence - The Longest Month

Postby fumaros » Fri May 10, 2019 11:00 am

Thanks everyone. That’s the plan, stay strong and live life, and discontinue the Ativan- it almost knocked me out.
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

Claudine
Posts: 21
Joined: Tue Mar 12, 2019 2:41 pm
Facebook Username: Claudine Tobalske

Re: Recurrence - The Longest Month

Postby Claudine » Fri May 10, 2019 1:41 pm

So sorry to hear about the recurrence, Fumaros. Since the new tumors were not visible on the scan (except for the one in the kidney) it seems that they're likely quite small, so hopefully chemo can wipe them out! Good thing you had that PET scan before they grew larger. I wish cost for PET scans would go down so it became a standard checkup method; there's nothing like them to catch early tumors.
Good luck XXX
Claudine
Wife of Dx 04/18 (51 yrs old then)
No primary found, lytic tumor L4 vertebrae, CEA 10
Radiation 04/18
Resection small intestine 05/18 (activity on PET scan, but no cancer found)
Xelox * 6, 05/17 to 10/18
5.3 cm hypermetabolic left adrenal mass 01/19
SBRT L4 02/19
Folfiri + Avastin
CEA 58 03/15
CEA 17 03/29
CEA 10 04/12
CEA 6.4 04/26
CEA 5 05/10

Gloriamazz
Posts: 44
Joined: Thu Jul 12, 2018 1:59 pm
Facebook Username: gloriamazz@ yahoo.com
Location: Ohio
Contact:

Re: Recurrence - The Longest Month

Postby Gloriamazz » Fri May 10, 2019 10:03 pm

Hi Fumaros,

Read your post today so sorry to read what you are going through.

I may have something similar as I went for my biopsy today and tech took tissue. He called the tumor a pelvic mass. He said it is by the sciatica nerve and asked about leg pain.
He said been doing biopsies for years and. 90 percent it is cancer.

Do you know how they treat the pelvic area. I should gave results by Wednesday or next Friday

Prayers and hugs.
June 29, 2018 Colonoscopy
found 3cm leision was biopsied came back as adenocarcinoma
Operated on August 8, 2018 Had APR removed Anus, Rectum and Sigmoid Colon
Have Barbie Butt and permanent Colostomy
March 5, 2019. Cat scan found 2 non specific lung nodules
Surgeon going to watch and repeat Cat Scan in 6 Months Sept. 10, 2019
April 29, 2019 HyperDense Liesion 1.8 x 1.8 cm

DarknessEmbraced
Posts: 3275
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: Recurrence - The Longest Month

Postby DarknessEmbraced » Sat May 11, 2019 9:54 am

I'm sorry you're dealing with a recurrence!*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

WarriorSpouse
Posts: 180
Joined: Tue Aug 16, 2016 9:02 pm

Re: Recurrence - The Longest Month

Postby WarriorSpouse » Sat May 11, 2019 12:38 pm

I am sorry to read of your recurrence. Going to Dan Farber and MSK in NYC are great opportunities for progress back to NED. I noticed that your footer does not reflect taking Oxyplatin, Avasitin or other drugs commonly mentioned on this blog. It would appear that you have many more options, depending on the tumor profile. Get the new plan, follow the new plan and continue the fight with vigor. You are young and can handle whatever they prescribe. My wish is to read of your NED sooner than most... Good luck and my thoughts and prayers are with you:)
WS
D/H 47 years old, 10/2014, Stage IV M/CRC, nodes 12/15, para-aortic, 5 cm sigmoid resection, positive Virchow. KRAS mut, MSS, Highly Differentiated, Lynch Neg, 5FU/LV and Avastin 1 YR (Oxi for 5 months) NED 05/2015, Zeloda/Bev since 01/2016. 02/2019 recurrence para-nodes, back to 5FU/LV Oxy/Bev, pending genetic results. "...Perseverance is not a long race; it is many short races one after the other."-Walter Elliot

lovelife789
Posts: 115
Joined: Thu Aug 24, 2017 5:28 am

Re: Recurrence - The Longest Month

Postby lovelife789 » Sat May 11, 2019 1:05 pm

I'm so sorry to hear this news, I keep you in my prayers. Stay strong!
F/38 - Dx 8 Mar 17, CEA 80.5
Stage IV Sig. Colon, 6 Liver mets, T3N0M1a, KRAS NRAS Wild, G2=Moderately differentiated
3/17- 6/17 - 6 rounds of FOLFOX + Erbitux - CEA 2.5
7/17 - 1st Liver resect/Colon/Gall, all clear margin
8/17 - 2nd Liver resec
9-12/17' - completed 13 rounds of FOLFOX - CEA 1.0
1/18 - Clear PET SCAN - CEA 1.4
3/18 - Clear MRI - CEA 0.8
6/30 - PET SCAN showed a lung nodule that grew from 5mm to 8mm - CEA 1.0
Aug - VATs done, colon met cfm

boxhill
Posts: 214
Joined: Fri Apr 06, 2018 11:40 am

Re: Recurrence - The Longest Month

Postby boxhill » Sat May 11, 2019 2:15 pm

So sorry to hear this news. It must be very challenging to deal with.

Warrior Spouse, FOLFOX, which the OP has had, includes Oxaliplatin. But yes, hopefully there are other alternatives.

OP, do you know your tumor genetics?
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemicolectomy
11 of 25 nodes,5 of 5 mesentery nodes
0.5 cm sub-capsular liver met removed
pT3 pN2b pM1
BRAF wild, KRAS G12D
dMMR, MSI-H
5/4/18 FOLFOX
Neulasta 6/28/18
7/9/18 CT no masses or enlarged nodes, 2mm indeterminate lung nodule
11/20/18 CT same, Lung nodule likely calcified granuloma. Enlarged spleen.
12/20/18 Liver MRI 5mm liver met and 2 lymph nodes in porta hepatis, CT review shows progression of nodes on FOLFOX
12/31/18 Keytruda

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WriterGirl1969
Posts: 510
Joined: Sat Mar 05, 2016 3:48 pm
Location: Central NY

Re: Recurrence - The Longest Month

Postby WriterGirl1969 » Sun May 12, 2019 6:49 pm

fumaros wrote:Then I had a PET Scan and my world came undone all over again. Multiple areas scattered over my retroperitoneum/bowel/pelvis lit up.
The plan is to take it a day at a time. Every tool is being kept in the bucket including HIPEC. But will start with chemo and see what happens.
Wish me luck everyone.


Oh my gosh, I am so sorry to hear what you're going through. The first thing I remembered when I saw your post was your response last year when I posted about Annie (aka Beansmama). I hate to hear that you have to go through this kind of recurrence. Darn stupid cancer! :x

I see you're from the Syracuse area. I am too. I'm going to PM you. Just remember, they threw everything including the kitchen sink at Annie and while things seemed really hopeless and desperate for a while, in the end her treatment DID work. Her cancer was gone, and the tumor when they removed it was completely dead. So there is always, ALWAYS hope.

Hugs from me to you.

Tracy (aka WriterGirl)
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.”


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