2nd Set of Eyes

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sdino
Posts: 85
Joined: Tue Mar 28, 2017 5:32 pm

2nd Set of Eyes

Postby sdino » Wed Mar 29, 2017 8:40 am

Hello – Quick introduction, I’m the husband to my lovely wife (52 yrs old). We have two daughters ages 25 and 19. My Wife was Dx with Stage IV Sigmoid Colon Cancer w/bilateral mets to lungs. Routine colonoscopy in Early Nov 2016 detected the tumor. CT scan of pelvis and chest revealed the bad news. Biopsy on the lung met revealed Adenocarcinoma from Colon. Started Folfox w/Avastin 12 rounds with Oxaliplatin, however the oncologist stopped the Oxi- after 8 rounds as she could not take it anymore.
I want to share my experience with others on getting a second opinion/consulting from a second Oncologist. Since the beginning and current, we are at Roswell Cancer Inst in Buffalo, NY. We just got back from a Sloan Kettering NYC appointment on 3/27/17. They reviewed ALL pathological slides, CT Scans, Bloodwork, Genetic Testing, ect, ect. We needed confirmation that Roswell (one egg in the basket) was on a “good” path for my wife. Here is what we learned:
• Sloan totally agrees with Roswell’s treatment and current approach
• Based on several CT’s, We have had some shrinkage of Colon tumor and lung mets
• Sloans Dr’s agree that Roswell Onc. To stop Oxaliplatin before more harm could come
• Since we are now a patient of one of Sloan’s Dr’s, we can now call them anytime, set up an appointment and be matriculated into their system. We agreed that basic Chemo/Bloodwork, CT Scans will remain at Roswell. When it comes to the Next Step in my wife’s treatments, Sloan will be consulted and they will advise on the next course of action. We have a followup appoint. w/Sloan in a month. So… basically I hope that I have two Oncologist fighting for my Wife’s life,. My job will be to ensure that both Institutions play nice together, communicate and formulate solid plans moving forward.
• Some of the smallest lung nodules could be infections/scar tissue
• One other Note… Sloan is working furiously on targeted chemo. Still in early stages.
Thank you for listening to me and our experiences, I hope it helps someone else who is thinking the same way. My Wife and I were very pleased with the outcome of our Sloan meeting and makes us feel better that we are currently receiving the best possible recommended chances from both these Institutes. I pray for everyone here who is fighting this disease., God Bless.
Caregiver for Wife 54 yrs old
DX:11/16-CC sigmoid colon
Lung Mets: 25+ Bilateral ranging 4mm-5.0cm
MSS, KRAS-G12D; TP53
iTCR TIL Trial NCT03412877 4/19 to 7/19 Off trial, - Sept. 2019 TIL trial NCT01174121
CT Scans: 7/2020 lung met shrinkage 36%, 3 lung mets left, two Liver mets destroyed by TILs
Brain tumor removal 3/2020
CEA:16-11/16; 5 -9/18; 63 -8/19; 1 -1/20; 0.8-5/20

Deb m
Posts: 558
Joined: Tue Jan 14, 2014 10:08 am

Re: 2nd Set of Eyes

Postby Deb m » Wed Mar 29, 2017 11:35 am

Welcome to the board,

I think it's great that you have chosen to have a second set of eyes look into your wife's case. It almost always proves to be beneficial. Sloan is a great place to get that second opinion from! My husband and I also got a second opinion. We went to MDA cancer center in Houston Texas. I believe that second opinion pretty much saved his life. They staged it differently and the treatment that our local oncologist wanted to do was very different than what MDA recommended. We of course followed MDA's advice and continued all of his treatments and follow ups there. I get an anxiety attack every time I think that we at one time actually contemplated not going and getting a second opinion and having somebody else look at everything, so glad we did!

He has been NED for 6 years now, and no longer needs any follow ups. I hope and pray that you wife has the same results.

Also praying for everybody on the board including care givers,

Deb

TXLiz
Posts: 249
Joined: Thu Sep 22, 2016 3:31 pm

Re: 2nd Set of Eyes

Postby TXLiz » Wed Mar 29, 2017 5:05 pm

Thank you for your post!

I see my local onc, but also get follow up from MD Anderson. My local onc said my testing for Lynch could not be done locally so you can bet I am getting it from MD Anderson, as I have 3 kids.

My onc always tells me protocol and standard of care and treatment is universal in the US, and he does exactly what MD A would do. I too have found that is true thus far, but who can blame cancer patients and their families for wanting a second look and a top cancer center also weighing in.

During one of my chemo infusions, the lady next to me said she was in her 3rd cancer, and it was in her brain. The nurse asked if she had been to MD Anderson (we are in TX) and she replied no, her insurance would not pay for it.

I have read some horror stories of patients needing checks from $10,000 to $40,000 just to get an evaluation at MD A. I think many cannot afford it.

Best wishes to you and wife and family. I am originally from a small town near Buffalo and miss it a lot, even the lake effect snow.
Vomiting and blockage 9/19/16 46 y F
R hemi colectomy 9/20/16
Stage 3 B CRC, located in cecum
3 out of 16 lymph nodes positive
perineural invasion/lymphovascular invasion
infiltrating, mod differentiated adenocarcinoma with a mucinous component
separate tumor nodules present in pericolonic adipose tissue
MSI-high
Baseline PET scan clear 9/16 CEA 0.5
FOLFOX 10/16- 3/17
April 16th, CT scan clear. CEA 1.1
Lynch "inconclusive"
Colonoscopy 10/5/2017 clear


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