Recurrence - The Longest Month

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fumaros
Posts: 273
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: 1613
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: 498
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 at dx)
10/1/18 DX with rectal cancer; CEA 17
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
6/28/19 Reversal and port out
CEA 2.1; 1.9; 2.6; 2.8; 2.3; 2.4; 3.0; 3.4; 3.1; 3.4; 3.0; 3.1; 2.6
Latest update: 8/21/23 Clear CT with CEA 2.6!

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

fumaros
Posts: 273
Joined: Sat Jul 02, 2016 10:26 pm
Location: Syracuse, NY
Contact:

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: 809
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

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 yo). MSS, KRAS G12A, no primary

Tumors: L4 04/18; left adrenal gland & small lung nodules 03/19
rectum 02/22 (pT3 pN0 stage 2A); L3 09/22

Surgeries: intestinal resect. 05/18 (no cancer - Crohn's); adrenalectomy 02/20
L3-L4-L5 fusion and corpectomy 05/20; LAR 04/22; ileo reversal 09/22
L2-L3 fusion and corpectomy 09/22

Treatments: EBRT 04/18; SBRT 02/19; Failed adjuvant Xelox ; Folfiri/Avastin 03/19 - 01/20
adjuvant chemorad (Xeloda) 06/22; SBRT 11/22; Xeloda/Avastin since 01/24

Gloriamazz
Posts: 89
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, scope
2.6 adenocarcinoma
8/8/18 APR
Stoma
March 19 CT 2 lung N.
April 29, 2019 Pelvis TMR 1.8 x 1.8 cm

7/22 - 7/29/ 2019 5 radi
no chemo 10 mo.
6-10-19 Folfox, Oxill
2nd Irinotecan , Folferi, FU5
12/14/2020, off folferi lung nods new
break going on pill drug Jan 2021
1/19/22, appt 2nd opinion wait to start Vectivix
2 mos no CHEMO
MMR
MSI/stable/HER2
1/2/2021 - round 1 Vectibix
Oligometastatic (NSCLC)

DarknessEmbraced
Posts: 3816
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
Clear colonoscopy 09/23/19
Clear 5 year scans 11/21/19- Considered cured! :)

WarriorSpouse
Posts: 220
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), Zeloda/Bev since 01/2016. 02/2019 recurrence para-nodes, back to 5FU/LV Oxy/Bev. It is working again. "...Perseverance is not a long race; it is many short races one after the other."-Walter Elliot

lovelife789
Posts: 161
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 189.5
Stage IV Sig. Colon, Liver mets, T3N0M1a, KRAS NRAS Wild
3/17- 6/17 - 6 x FOLFOX + Erbitux
7/17 - 1st & 2nd Liver resec
9-12/17' - 13 x FOLFOX
1-6/18 - NED
6/18 - PET SCAN showed a 0.8mm lung nodule, VATs
8/18 - 4/19 - NED
5/19 - recurrence 1 x PALN, 1x common iliac
FOLFIRI + Avastin x 12 - complete response, SBRT
12/19-5/20 - NED
5/20 - recurrence in LNs, tiny liver spots x 2, W n W due to COVID
8/20 - LNs very slightly increased, liver stable, one new liver spot

boxhill
Posts: 789
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 hemi
11 of 25 LN,5 mesentery nodes
5mm liver met
pT3 pN2b pM1
BRAF wild, KRAS G12D
dMMR, MSI-H
5/18 FOLFOX
7/18 and 11/18 CT NED
12/18 MRI 5mm liver mass, 2 LNs in porta hepatis
12/31/18 Keytruda
6/19 Multiphasic CT LNs normal, Liver stable
6/28/19 Pause Key, predisone for joint pain
7/31/19 Restart Key
9/19 CT stable
Pain: all fails but Celebrex
12/23/19 CT stable
5/20 MRI stable/NED
6/20 Stop Key
All MRIs NED

User avatar
WriterGirl1969
Posts: 524
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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