The Box

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sdino
Posts: 36
Joined: Tue Mar 28, 2017 5:32 pm

The Box

Postby sdino » Tue Apr 18, 2017 5:26 pm

Im going to throw this out here. We have been to 2 good Cancer Centers. I get the impression that they follow certain protocol and if that’s not good enough, then it “feels” to me, that they cash their chips in. This how I honestly feel about my Wife’s situation. To me in this day and age that is unacceptable ! Sometimes, I feel that it is a false sense of hope from these well established centers. However, it does makes my wife feel comfortable going to the BIG joints. But something and I can’t put my finger on it, Im worried as all heck. Is their enough being done in the colon cancer arena ? Is their places that people turn to in an effort to find a life extension/cure in a desperate situation ? We are new to this just…. into completion with the first 12 rounds of Chemo. I am so frustrated with the more I investigate, the worse my mind and my soul gets in turmoil. Foremost, I want to say I mean no dis-respect to the people that have moved into the Lord’s Arms and the immense fight for the right to live they have all fought. Dear Lord, is their an institution that will get the helluva out of the Box and try something that has promise. How do we get out of this Box !!
Caregiver for Wife 52 yrs old
DX: 11/16-CC sigmoid colon 3 cm, Lung Bio-Adenocarcinoma Stg IV
Mets: 1.2 cm now 7 mm lung w/14 other nodules less than 6 mm. 7/17 growth in Mets
MSS, KRAS-mut G12D; TP53;
Completed 12 rounds Folfox/Avastin + Oxi 11/16 to 5/17
8/17 Start Xeloda + Avastin
CT Scans: 11/16; 1/17 lung mets/colon shrinkage; 5/17 colon & lung met shrinkage, 7/17 disease progression lungs/colon
CEA: 16 - 11/16; 4 – 12/16; 0.5 – 2/17; 0.6 - 5/17; 2.6 - 7/17

teri3
Posts: 343
Joined: Fri Jan 09, 2015 11:03 am

Re: The Box

Postby teri3 » Tue Apr 18, 2017 7:41 pm

There's always the trials. Lots of new things coming along all the time. Research the clinical trials post on here. It can be overwhelming and scary. Hang in there.
Hugs
Teri
58 yrs old female
MSS KRAS mutation G12V
adenocarcinoma sigmoid colon dx 11-14
sigmoidectomy 11-14
Stage 3A
3 out of 20 lymph nodes involved
started FolFox 1-27-15
11 rounds FOLFOX last one 6-30-2015
7-29-2015 PET clear
5-14-2016 CT 2 nodules one in each lung
Confirmed pulmonary metastasis stage 4
FOLFIRi + Avistin started 8-16 11 rounds complete 12-16
CT 12-16 nodules shrunk chemo break wait and see :?

Utwo
Posts: 131
Joined: Mon May 23, 2016 10:14 am
Location: T.O.

Re: The Box

Postby Utwo » Tue Apr 18, 2017 9:36 pm

sdino wrote:I get the impression that they follow certain protocol and if that’s not good enough, then it “feels” to me, that they cash their chips in.

sdino, in the US big hospitals are especially concerned about lawsuits, because they have tons of money.
There are armies of malpractice lawyers salivating every time they hear about somebody dying.
Cancer Centers by the nature of this disease have a lot of people dying.
Following established protocols is their main defence against US lawyers.
As a result doctors are required to follow all protocols and guidelines to a letter.
Nothing personal - strictly business.
58 yo male at diagnosis - T1bN0, 0/15 lymph nodes, low grade/moderately differentiated adenocarcinoma
03/2016 colonoscopy #1: 2 small polyps removed in left colon; CEA = 1.3
04/2016 colonoscopy #2: caecum sessile 3.5 cm polyp piecemeal removed
05/2016 CT scan, blood test ...
05/2016 laparoscopic right hemicolectomy with a few complications (bleeding, leak, infection)
06/2017 CT scan, colonoscopy OK; CEA = 1.6

Achilles Torn
Posts: 80
Joined: Fri Dec 16, 2016 2:41 pm

Re: The Box

Postby Achilles Torn » Wed Apr 19, 2017 2:00 am

If I read your signature correctly it sounds like your wife has had a really good response to FolFox + Avastin - if so that is great news.
Are you hoping for a surgery for the lung and colon ?
Maybe you could explain what the Dr's are suggesting going forward ?

AT
40 yo Male. BC Canada. Sigmoid Colectomy Dec. 2016
Pathology T3N2bM1 19 of 24 Nodes Positive + tumour deposits
PET scan - Para-Aortic and Iliac Lymph node spread. Stage VI.
Moderately differentiated. MSS. KRAS/BRAF Wild.
Mutations: TP53, ERBB4, MLL3, PDCD1LG2, PRKDC, SMAD3
FOLFOX Commenced Jan 9/2017 - Avastin(Bev) added after round 1.
June 2017 Dose Reduction on Round 11 due to Neuropathy.
Good PET Scan July 2017 - on maintenance 5FU/Bev every 2 weeks until progression.

Jacques
Posts: 408
Joined: Sun Dec 28, 2014 10:38 am

Re: The Box

Postby Jacques » Wed Apr 19, 2017 3:41 am

sdino wrote:... 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...

sdino -

You mentioned earlier that MSKCC would advise you on the next course of action and that you would have another meeting with them sometime this month.

Have you had that meeting yet? Have they come up with a plan? Have they told you what they are waiting for?

Maybe you could ask the Sloan Dr. to outline the contingency plan that they have in mind. They might be waiting to get the most recent bloodwork and scans from Roswell before deciding what to do next.
DX(2012): RC
Stage IIc,T4b N0 M0 L0 PN1 H0 D0 P0 I1
LAR
MSI: not tested
Chimio-radiothérapie
Chimiothérapie adjuvante : capécitabine + oxaliplatine
CEA < 1.0,
5 years NED,
End of 6-month follow-ups: 7/2017
----
Info links:
Create Your Signature
How to Select a Surgeon
List of Forum Features
Colorectal Cancer Stages (TNM)

sdino
Posts: 36
Joined: Tue Mar 28, 2017 5:32 pm

Re: The Box

Postby sdino » Wed Apr 19, 2017 12:13 pm

Hi Achilles, yes FolFox+Avastin currently has been very good to us. As of today, visit w/Onc, we will do 1 more chemo treatment at end of April then a CT scan in May. Then it will be a decision with our Onc at Roswell with Final approval from the MSKCC Onc on the treatment Plan moving forward. (possible chemo break) My frustration lies with really nothing has been addresses or discussed about the lungs. I understand the waiting game with CRC, but I guess I have to train myself to be more patient. So we are trying to educate ourselves about lung surgeries (not worried about colon tumor yet)…. As u can see from my wife’s sig, small multiple lung mets will need to discussed at some point.

Hi Jacques – Yes we had our first apt w/MSKCC. Essentially they are in agreement with Roswell’s approach with nothing discussed about lung mets. MSKCC will advise and approve all proposed treatments in the future. We have a follow-up with Sloan once we complete chemo and CT scan in Mid May. I do like the idea of tasking the Sloan Dr. to come up with a contingency plan.
Believe it or not, since I joined this Forum, first I found out about VATS, then investigating this further, we found out that Roswell has a VATS surgeon on staff. My Onc @ Roswell has made no mention of that … weird ! Also, we have been in contact with Dr Rosenburg’s Nurse at NIH/NCI but that’s another day if chemo goes south on us.

I want to thank you both to responding to us. Looks like we still have research to do. Thanks, Be well !
Caregiver for Wife 52 yrs old
DX: 11/16-CC sigmoid colon 3 cm, Lung Bio-Adenocarcinoma Stg IV
Mets: 1.2 cm now 7 mm lung w/14 other nodules less than 6 mm. 7/17 growth in Mets
MSS, KRAS-mut G12D; TP53;
Completed 12 rounds Folfox/Avastin + Oxi 11/16 to 5/17
8/17 Start Xeloda + Avastin
CT Scans: 11/16; 1/17 lung mets/colon shrinkage; 5/17 colon & lung met shrinkage, 7/17 disease progression lungs/colon
CEA: 16 - 11/16; 4 – 12/16; 0.5 – 2/17; 0.6 - 5/17; 2.6 - 7/17

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mypinkheaven
Posts: 415
Joined: Fri May 20, 2016 4:29 pm
Facebook Username: Sally Cunningham
Contact:

Re: The Box

Postby mypinkheaven » Thu Apr 20, 2017 3:17 pm

sdino wrote: My frustration lies with really nothing has been addresses or discussed about the lungs.


In my experience, the doctors don't want to mess with multiple, widely spread lung mets. If there are under 5 nodules, the doctors may start to discuss VATS, SBRT or RFA. But with 14 nodules, they will probably stick with chemo. A different chemo regime for your wife may kill some nodules and get her to the point where a thoracic surgeon or an interventional radiologist would consider treatment. Otherwise it's trying to keep the nodules stable. I have 16. I switched from Folfox + Avastin to Folfiri + Erbitux and my first post chemo CT scan showed some response.
MSS, KRAS Wild
9/2012 Colon Cancer IIB Lft Colectomy 0 lymph nodes 0 Chemo
10/2013 CT clear
11/15 CEA 2.7 to 4.6
11/15 Metastasis to uterus. Hysterectomy
2/16 Pelvic radiation - 25, brachytherapy - 3.
4/16 - 6/16 Xeloda
6/16 CT Several lung nodules less than 5 mm.
8/16 CT Nodules still present. Most stable. Some growth
10/16 CT Same ^. Onc recommends no tx :evil:
11/16 Transfer to UCSD Moores Cancer Center
12/16 Folfox + Avastin failed
2/17 Folfiri + Erbitux
8/17 5FU+Erbitux No 5FU bolus

sdino
Posts: 36
Joined: Tue Mar 28, 2017 5:32 pm

Re: The Box

Postby sdino » Thu Apr 20, 2017 5:33 pm

Thank you MyPink for your response, exactly what Im thinking. That mindset has gotsta change in my opinion. Im going to TRY in the near future to change my Onc’s mindset on this. They should be pulling all stops when the iron is hot. What the hell am I going to wait till she has 45 nodules ???? There is where our concerns are. We have had good response so far from chemo, but the end game is Foggy and it makes me very worried. Thank you, and I hope the very best for you.
Caregiver for Wife 52 yrs old
DX: 11/16-CC sigmoid colon 3 cm, Lung Bio-Adenocarcinoma Stg IV
Mets: 1.2 cm now 7 mm lung w/14 other nodules less than 6 mm. 7/17 growth in Mets
MSS, KRAS-mut G12D; TP53;
Completed 12 rounds Folfox/Avastin + Oxi 11/16 to 5/17
8/17 Start Xeloda + Avastin
CT Scans: 11/16; 1/17 lung mets/colon shrinkage; 5/17 colon & lung met shrinkage, 7/17 disease progression lungs/colon
CEA: 16 - 11/16; 4 – 12/16; 0.5 – 2/17; 0.6 - 5/17; 2.6 - 7/17


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