Anyone with peri mets who survived?

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Punky44
Posts: 203
Joined: Mon Oct 01, 2018 4:29 pm

Re: Anyone with peri mets who survived?

Postby Punky44 » Sat Dec 08, 2018 2:27 pm

Bumping for Trying.
Caregiver to my amazing mom (68)
10/1/18 DX with rectal cancer; CEA 17 at diagnosis
MRI/CT/PET puts staging at T3N2M0
Trying total neoadjuvant therapy—chemo first, then short course radiation, then surgery
Completed 8 rounds of neoadjuvant Folfox 11/5/18 - 2/11/19
Current CEA 7.0

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

WarriorSpouse
Posts: 168
Joined: Tue Aug 16, 2016 9:02 pm

Re: Anyone with peri mets who survived?

Postby WarriorSpouse » Sat Dec 08, 2018 2:58 pm

I am sorry to read of your recent troubles. My wife has had great success with an aggressive 1st year chemo program with 5FU and Avastin; and then after becoming NED, using Zeloda and Avastin on a three week maintenance treatment schedule. She feels and looks great, and just needs to get a power nap in during the afternoon to keep it all feeling normal. She has been NED for over 3 years.
We wish you well in becoming NED again soon.
WS
Spouse of wife 47 years old, 10/2014, Stage IV Metastatic CC ,Lymph nodes 12/15, w/ positive PET on para-aortic lymph nodes, 5 cm sigmoid tumor resection as well as positive Virchow lymph node.
KRAS mut, MSS, Highly Differentiated, Lynch Negative, Folfox and Avastin 1 YR (Oxi for 5 months) NED 05/2015, Zeloda and Avastin since 01/2016, Chemo break 03/2017, back on Zeloda and Avastin 04/2017
"...Perseverance is not a long race; it is many short races one after the other."
-Walter Elliot

JulesW
Posts: 11
Joined: Thu Jun 21, 2018 1:48 pm

Re: Anyone with peri mets who survived?

Postby JulesW » Wed Jan 16, 2019 2:23 pm

Hi Lydia,
I was diagnosed with stage II rectal cancer in December 2016. Lymph nodes were negative and no metastases but it had broken through the colon wall. June 2018 four spots on my right lung and three spots my left lung were noted. I had these removed in Germany with laser assisted pulmonary metastectomy October/November of last year. A few weeks after returning I saw blood in my urine and cystoscopy/biopsy came back as rectal cancer which likely means that I also have peri mets because it's very unusual for colorectal cancer to metastasize to the bladder and there were no adhesions noted at the time of surgery. I have follow-up scheduled with a surgeon but will try to get into a major cancer center like Memorial Sloan-Kettering. First I need to get insurance sorted out. I wish you the best and I'll let you know what I learn. I just found this out yesterday.
Sincerely,
Julius
Dx at 46 rectal ca. 12/16
CT scan 1/17 4 spots R upper lung largest 8 mm
f/u CT scan 4/17 showed spots in lung stable
LAR 1/17 rectal tumor stage 2b, 0/30 nodes pos
Xeloda x 6 mos
CT 6/18 - 4 nodules right upper lung had inc. in size, also 3 new spots in left lower lung
6/18 folfiri + Avastin x 5 cycles
radiation onc and surgeon say too many nodules
LAPM Germany 10/18 - 10 nodules removed right lung, 4 cancer
11/1/18 R pneumothorax - chest tube placed surgically
11/6/18 planned LAPM for L lung

Donna wayne jake
Posts: 3
Joined: Sat Feb 09, 2019 2:39 am
Facebook Username: Donna Sherman

Re: Anyone with peri mets who survived?

Postby Donna wayne jake » Sat Feb 09, 2019 2:50 am

Hi I have 8 spots told not operable but I've heard about this. Can I ask the cost of laser surgery in Germany please

User avatar
LPL
Posts: 519
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

Re: Anyone with peri mets who survived?

Postby LPL » Sat Feb 09, 2019 1:24 pm

JulesW wrote:Hi Lydia,
I was diagnosed with stage II rectal cancer in December 2016. Lymph nodes were negative and no metastases but it had broken through the colon wall. June 2018 four spots on my right lung and three spots my left lung were noted. I had these removed in Germany with laser assisted pulmonary metastectomy October/November of last year. A few weeks after returning I saw blood in my urine and cystoscopy/biopsy came back as rectal cancer which likely means that I also have peri mets because it's very unusual for colorectal cancer to metastasize to the bladder and there were no adhesions noted at the time of surgery. I have follow-up scheduled with a surgeon but will try to get into a major cancer center like Memorial Sloan-Kettering. First I need to get insurance sorted out. I wish you the best and I'll let you know what I learn. I just found this out yesterday.
Sincerely,
Julius

Donna wayne jake wrote:
Hi I have 8 spots told not operable but I've heard about this. Can I ask the cost of laser surgery in Germany please

Hi Donna,
I have included/quoted JulesW here because I believe that will trigger a notification to Jules and your comment will be seen.
All the best to you! /LPL
DH @ 65 DX 4/11/16 CC recto-sigmoid junction
Adenocarcenoma pt 35x15x9mm G3(biopsi) G1(surgical)
Mets 3 Liver resectable
T4aN1bM1a Stage IVa 2/9 LN
MSS, KRAS-mut G13D
CEA & CA19-9: 5/18 2.5 78 8/17 1.4 48 2/14/17 1.8 29
4 Folfox 6/15-7/30 (b4 liver surgery) 8 after
CT: 8/8 no change 3/27/17 NED for now :D
:!: Steroid induced hyperglycemia dx after 3chemo .. hospitalized, insulin -> Metformin
Surgeries (open):
3/18 Emergency colostomy 5/23 Primary+gallbl+colostomy reversal (+port) 9/01 Liver mets

JulesW
Posts: 11
Joined: Thu Jun 21, 2018 1:48 pm

Re: Anyone with peri mets who survived?

Postby JulesW » Mon Feb 11, 2019 5:09 pm

Hi I have 8 spots told not operable but I've heard about this. Can I ask the cost of laser surgery in Germany please


Hi Donna wayne jake, the cost of surgery was €15,000 per lung
Dx at 46 rectal ca. 12/16
CT scan 1/17 4 spots R upper lung largest 8 mm
f/u CT scan 4/17 showed spots in lung stable
LAR 1/17 rectal tumor stage 2b, 0/30 nodes pos
Xeloda x 6 mos
CT 6/18 - 4 nodules right upper lung had inc. in size, also 3 new spots in left lower lung
6/18 folfiri + Avastin x 5 cycles
radiation onc and surgeon say too many nodules
LAPM Germany 10/18 - 10 nodules removed right lung, 4 cancer
11/1/18 R pneumothorax - chest tube placed surgically
11/6/18 planned LAPM for L lung

Mpm
Posts: 1
Joined: Sun Feb 17, 2019 5:36 pm

Re: Anyone with peri mets who survived?

Postby Mpm » Sun Feb 17, 2019 5:53 pm

WarriorSpouse wrote:I am sorry to read of your recent troubles. My wife has had great success with an aggressive 1st year chemo program with 5FU and Avastin; and then after becoming NED, using Zeloda and Avastin on a three week maintenance treatment schedule. She feels and looks great, and just needs to get a power nap in during the afternoon to keep it all feeling normal. She has been NED for over 3 years.
We wish you well in becoming NED again soon.
WS

Hi Warrior Spouse. Thank you for sharing. I have been diagnosed with the similar crc as your wife. Where is she being treated and did you ever change her diet ? I’ll be having chemo next week (folfoxiri and avastin) . Last month I had a partial colectomy and full hysterectomy. Thanks again.


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