Four months in , scared, confused and overwhelmed about how to proceed

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TXLiz
Posts: 175
Joined: Thu Sep 22, 2016 3:31 pm

Re: Four months in , scared, confused and overwhelmed about how to proceed

Postby TXLiz » Thu Mar 16, 2017 2:54 pm

Hi Sarah. So sorry you are here, and facing this with your husband. Feels super unfair, right? Totally overwhelmed, fearful, despairing, just an avalanche of bad feelings.

I know.Us too. I see every day as a victory. If I and my family get through the day, it's a good day, no matter what. (And let's not kid ourselves, the day may have been an utter disaster. But we got through it, right?)

I hope for the best for you and your husband.
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
Baseline PET scan clear 9/16 CEA 0.5
FOLFOX 10/16- 3/17
April 16th, CT scan clear. CEA 1.1
Lynch "inconclusive"

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juliej
Posts: 2685
Joined: Thu Aug 05, 2010 12:59 pm

Re: Four months in , scared, confused and overwhelmed about how to proceed

Postby juliej » Thu Mar 16, 2017 6:34 pm

SarahS wrote:Julie, thank you, I was hoping you might chime in , you are kind of a hero of mine :) along with many others on this board.
Do you think that it might be worth contacting MSK even with the peritoneal involvement ( which I think is not that extensice given that the colorectal surgeon took out almost everything including the kitchen sink whilst performing his resection) ?

Sarah,

Yes, I would definitely recommend contacting Dr. Kemeny's office! :D See if you can get a referral from his colorectal surgeon. It's a little faster to get a consultation that way. She'll want to see his latest CT scan and all test results, labs, etc.

You're smart to be looking around for alternatives right now since he's seeing good results from the chemo. Stay strong and stay aggressive about getting him the best treatment possible!

Hugs to you!
Juliej
Stage IV, liver/lung mets 8/4/2010
Xelox+Avastin 8/18/10 to 10/21/11
LAR, liver resec, HAI pump 11/11
Double lung surgery + ileo reversal 2/12
Adjuvant Xeloda 3-9/12
VATS rt. lung 12/21/12 - benign granuloma!
NED 3/17/12 to 6/19/2017, CEA<1

mariane
Posts: 516
Joined: Sun Sep 13, 2015 6:16 pm

Re: Four months in , scared, confused and overwhelmed about how to proceed

Postby mariane » Thu Mar 16, 2017 10:07 pm

Sarah,
I see GA in one of the posts. Are you living in Atlanta? Dr Ballard from Piedmont Cancer Center in Atlanta is working with Dr Kemeny. They are exchanging patients sometimes , cooperate and you can receive some treatments locally, some in NY. They try hard to arrange everything as convenient for patients as possible. I am one of their shared patients.
I personally met 2 of Dr Kemeny patients with peritoneum involvement. One had HIPEC by Dr Sugarbaker , than HAI pump, resection, is NED, no chemo.
The other one had MSKCC version of HIPEC, HAI pump, resection, is NED, now on chemo.
You can successfully treat traditionally (chemo+surgery) some of stage 4 patients with more sites affected. The key is: good response to chemo,(Sarah, Melissa - the CEA of your husband went down fast), aggressive surgeon and oncologist.
mom of almost 8 years old twins, dx @ 40 with stage 4 upper rectal cancer with liver mets on 6/26/2015, CEA 140
8/2015 - beginning chemo: 4xFOLFIRINOX, 2xFOLFOX, 8xFOLFIRI, 10x5FU, 12xFUDR
4 surgeries complete pathological response
CEA<2 since 10/2015
NED since May 2016

Praise God for every day with my family!

SarahS
Posts: 43
Joined: Sat Mar 11, 2017 12:44 pm

Re: Four months in , scared, confused and overwhelmed about how to proceed

Postby SarahS » Thu Mar 16, 2017 10:49 pm

Thank you again Julie, we will definitely be contacting MSK

Mariane- yes we are in Atlanta , currently being treated at Piedmont , although not with Dr Ballard, but that is very useful to know of the MSK connection , thank you so much for bringing that to my attention. I suspect that I might have questions for you going forward, would it be alright if I were to message you at some point in the future?
Wife and caregiver to husband diagnosed with stage 4 colon cancer Nov 2016
Emergency surgery to remove blockage in cecum 12/03/2016
Stage 4 colon cancer. Mets to liver, peritoneum, possibly lungs
K-Ras mutant MSS
01/05/2017 Begin Folfox 6 plus Avastin
CEA pre surgery 114, post surgery 70, 02/2017- 35 03/2017- 23 04/2017- 12

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Hannah Faulkner
Posts: 29
Joined: Tue Feb 14, 2017 3:14 am

Re: Four months in , scared, confused and overwhelmed about how to proceed

Postby Hannah Faulkner » Fri Mar 17, 2017 7:08 am

So sorry to hear about your hubby’s diagnosis and is V. lucky to have you. I hope Trial and chemo add for you.

Best Wishes,
Hannah

mariane
Posts: 516
Joined: Sun Sep 13, 2015 6:16 pm

Re: Four months in , scared, confused and overwhelmed about how to proceed

Postby mariane » Fri Mar 17, 2017 9:36 am

Sarah, anytime. :)

I will be at Piedmont this Wednesday most likely. I have labs to do and pump flush. I am waiting for glycerol from NY to flush, so the Wednesday is 90% sure.

The nurse, who usually flushes my pump told me that they have now 5 or 6 patients with the pump at Piedmont. They see both: Dr Ballard and Dr Kemeny. I did the opposite way: Dr Kemeny sent me to Dr Ballard :) She called him to scheduled my first appointment with him to maybe my treatment as bearable as possible for me. Dr Ballard is very positive, nice man.
mom of almost 8 years old twins, dx @ 40 with stage 4 upper rectal cancer with liver mets on 6/26/2015, CEA 140
8/2015 - beginning chemo: 4xFOLFIRINOX, 2xFOLFOX, 8xFOLFIRI, 10x5FU, 12xFUDR
4 surgeries complete pathological response
CEA<2 since 10/2015
NED since May 2016

Praise God for every day with my family!

mhf1986
Posts: 23
Joined: Sat Mar 11, 2017 8:30 pm
Location: near DC

Re: Four months in , scared, confused and overwhelmed about how to proceed

Postby mhf1986 » Sat Mar 18, 2017 6:43 pm

Sarah! You still around? I wanted to share that DH's latest CEA has fallen to 14. Yes, FOURTEEN. It was 114 in September right before surgery and has been going down since he started FOLFOX in late November. It was 31 in February.

We had a long talk tonight about HAI, surgery, and such. Thinking about various options. He hates the idea of surgery (the two surgeries back in October were a disaster, complete with sepsis and collapsed lung) but is willing at least to consider it. So will be asking the Onc on Tuesday when he plans on another CT scan and then decide next steps. Best guess is May.

Does anyone out there know if HAI is only done at MSK? We are only 3 hours from there via train so that's an obvious choice but just wondering. IF MSK is the only place, is because of surgeons, or patents, or what?

Sending you some hugs and some hope,

Melissa
Caregiver to DH, dx age 50, mets to liver, MSS, KRAS wild
10/16: hemicolectomy, colostomy, CEA 114
11/16: FOLFOX started, Avastian added 12/16
2/17: CT scan shows 1 liver tumor shrinking, CEA 31
4/17: CEA 11, blood pressure medicine added
5/17: 1mm growth to lung nodes? liver stable, CEA 15, OX discontinued due to neuropathy
6/17: CEA 12

mariane
Posts: 516
Joined: Sun Sep 13, 2015 6:16 pm

Re: Four months in , scared, confused and overwhelmed about how to proceed

Postby mariane » Sat Mar 18, 2017 8:30 pm

There are other places which offer HAI. Dr Kemeny traveled the world to convince oncologists to use HAI.

She has the greatest experience in HAI chemo dosage. She saw all kinds of side effects.
The surgeons in MSKCC who work with her do the hundreds of HAI placements and liver resections per year so they have the greatest experience. They so many anatomic variations. I had rare anatomy and still my surgeon was able to place pump modified for my divided arteries.
Dr. Kemeny has stage 4 patients who are over 20 years cancer free thanks to HAI pump.Colon cancer is very recurrent cancer. HAI pump cuts recurrence rate. It can also help shrinking previously unresectable tumors.
mom of almost 8 years old twins, dx @ 40 with stage 4 upper rectal cancer with liver mets on 6/26/2015, CEA 140
8/2015 - beginning chemo: 4xFOLFIRINOX, 2xFOLFOX, 8xFOLFIRI, 10x5FU, 12xFUDR
4 surgeries complete pathological response
CEA<2 since 10/2015
NED since May 2016

Praise God for every day with my family!

SarahS
Posts: 43
Joined: Sat Mar 11, 2017 12:44 pm

Re: Four months in , scared, confused and overwhelmed about how to proceed

Postby SarahS » Sat Mar 18, 2017 9:25 pm

Hi Melissa, yes still here! That is fantastic news regarding the CEA number, :D
Our next CEA test is a few weeks away but My husband is doing well so we are hoping for another good result.

Mariane, we are at Piedmont on Tues for infusion and Thursday for pump disconnect, sounds like our days are out of synch unfortunately but I an extremley grateful to you for all of the info you and Julie have shared so far. This is a dark and lonely road but the people on this board make it that much more bearable , you give me hope :D
Wife and caregiver to husband diagnosed with stage 4 colon cancer Nov 2016
Emergency surgery to remove blockage in cecum 12/03/2016
Stage 4 colon cancer. Mets to liver, peritoneum, possibly lungs
K-Ras mutant MSS
01/05/2017 Begin Folfox 6 plus Avastin
CEA pre surgery 114, post surgery 70, 02/2017- 35 03/2017- 23 04/2017- 12

mhf1986
Posts: 23
Joined: Sat Mar 11, 2017 8:30 pm
Location: near DC

Re: Four months in , scared, confused and overwhelmed about how to proceed

Postby mhf1986 » Mon Mar 20, 2017 6:30 pm

Hi Sarah, Are you allowed to disconnect the pump? The home health care nurse taught me and after 2 times watching me, she said I was fine to go solo. So that's a time/expense savings for us in that we don't have to go back to the hospital or arrange for the nurse to come to the house. It's a very easy process. I had to do the antibiotic infusion/saline/heparin after the surgeries so this is similar. The worst part is pulling off the bandages off!

Headed to hospital tomorrow (Tuesday) for meeting with oncologist followed by infusion. Expecting blood pressure medication to be added as the Avastian is really messing with the lower number.

Melissa
Caregiver to DH, dx age 50, mets to liver, MSS, KRAS wild
10/16: hemicolectomy, colostomy, CEA 114
11/16: FOLFOX started, Avastian added 12/16
2/17: CT scan shows 1 liver tumor shrinking, CEA 31
4/17: CEA 11, blood pressure medicine added
5/17: 1mm growth to lung nodes? liver stable, CEA 15, OX discontinued due to neuropathy
6/17: CEA 12

inorganic8
Posts: 35
Joined: Mon Feb 27, 2017 6:13 pm

Re: Four months in , scared, confused and overwhelmed about how to proceed

Postby inorganic8 » Tue Apr 04, 2017 7:06 pm

Hi Sarah,

I met you briefly on the "Wives" thread. It looks like your husband and mine have very similar circumstances. Joe has mets in his omentum, on his abdominal wall, and on the surface of his liver. This is a lousy freakin' boat to be in, but since we're both in it, I guess we can help each other paddle. I don't know much about immunotherapy, but I have done a lot of HIPEC research. I even made a spreadsheet comparing multiple surgeons. If that's something you are interested in, I would be happy to share my research.

You're not alone. Contact me any time. I'm easy to find on gmail, just use my forum user name.

-Kim
Wife to wonderful man with CRC
Stage IV Diagnosis 1/27/17, Mets to Liver, Omentum, Peri
KRAS Mutation, G12, MSS
Folfirinox 2/8/17, completed 9 rounds
Follow-Up PET 4/13/17 - Very encouraging. Definite shrinkage and 2/3 liver mets resolved.
Follow-Up PET 6/13/17 - Very encouraging. Even more shrinkage.
Folfiri 6/14/17

inorganic8
Posts: 35
Joined: Mon Feb 27, 2017 6:13 pm

Re: Four months in , scared, confused and overwhelmed about how to proceed

Postby inorganic8 » Wed Apr 05, 2017 5:13 pm

Hi Melissa,

I see you are in this boat too.

*Hands Melissa a paddle*

If I can help you in any way or be a sounding board, don't hesitate to contact me. This is proving to be a great club of kind, generous people. I'm just sorry anyone has to be here.

-Kim
Wife to wonderful man with CRC
Stage IV Diagnosis 1/27/17, Mets to Liver, Omentum, Peri
KRAS Mutation, G12, MSS
Folfirinox 2/8/17, completed 9 rounds
Follow-Up PET 4/13/17 - Very encouraging. Definite shrinkage and 2/3 liver mets resolved.
Follow-Up PET 6/13/17 - Very encouraging. Even more shrinkage.
Folfiri 6/14/17

mhf1986
Posts: 23
Joined: Sat Mar 11, 2017 8:30 pm
Location: near DC

Re: Four months in , scared, confused and overwhelmed about how to proceed

Postby mhf1986 » Wed Apr 05, 2017 6:53 pm

Hi Kim,

Can we sell our paddles and buy an outboard motor?

Real question: I asked about Folfirinox back in November and our oncologist poo-poo-ed (no pun intended) the idea. How's it going? Did your onc recommend it or what? DH is on Folfox w/Avastian and it's doing it's thing but I've read that adding the irin has a better prognosis.

Thanks, Melissa
Caregiver to DH, dx age 50, mets to liver, MSS, KRAS wild
10/16: hemicolectomy, colostomy, CEA 114
11/16: FOLFOX started, Avastian added 12/16
2/17: CT scan shows 1 liver tumor shrinking, CEA 31
4/17: CEA 11, blood pressure medicine added
5/17: 1mm growth to lung nodes? liver stable, CEA 15, OX discontinued due to neuropathy
6/17: CEA 12

inorganic8
Posts: 35
Joined: Mon Feb 27, 2017 6:13 pm

Re: Four months in , scared, confused and overwhelmed about how to proceed

Postby inorganic8 » Thu Apr 06, 2017 4:30 pm

Folfirinox is pretty hard core, but Joe is tolerating it well. The irinotecan (or "I run to the can," as it is lovingly called) does cause some abdominal discomfort and diarrhea. So far the side effects have been manageable. Our oncologist started this therapy because he did not want to use Avastin. My husband had a colon stent placement before we got to the onc. and he is worried Joe will need surgery or have a perforation due to the stent.

Our current oncologist is Dr. SoulCrusher. The day we walked in he explained to us that there was no hope for a cure, and Joe had 2 to 3 years with chemo. He did not see surgery as an option. So it's a little ironic that he's the most grim of the doctors that we've consulted but has ordered the most aggressive treatment. (First onc. consulted wanted Folfox.)

We're going to fire Dr. SoulCrusher later down the line, but for right now the treatment plan seems good. Joe gets scanned next week, so we'll see what kind of progress we're making.

By the way, it took us a while to work through Dr. SoulCrusher's prognostication, but now that we have, we are in no way giving up. I am currently in contact with Wake Forrest to see if they consider him a candidate for HIPEC surgery. Memorial-Sloane Kettering does consider him a HIPEC candidate, so one way or another, that's the option we'll be pursuing.

As a side note, I understand that Folfirinox is generally used for pancreatic cancer.

Regards,
-Kim
Wife to wonderful man with CRC
Stage IV Diagnosis 1/27/17, Mets to Liver, Omentum, Peri
KRAS Mutation, G12, MSS
Folfirinox 2/8/17, completed 9 rounds
Follow-Up PET 4/13/17 - Very encouraging. Definite shrinkage and 2/3 liver mets resolved.
Follow-Up PET 6/13/17 - Very encouraging. Even more shrinkage.
Folfiri 6/14/17

mhf1986
Posts: 23
Joined: Sat Mar 11, 2017 8:30 pm
Location: near DC

Re: Four months in , scared, confused and overwhelmed about how to proceed

Postby mhf1986 » Fri Apr 07, 2017 7:03 pm

HI Kim (and Sarah since you started this!)

Your Dr. sounds like our Dr. Almost the exact same 2-3 years speech. AND a lot of statistics that I know aren't true. I think we will keep going with him until after the May CT scan as the Folfox is working for now. My biggest concern (if I may be age-ist here) is that he's 60 and doesn't seem to be up on new research. I also think his PA did the treatment plan. We haven't been offered a tumor board, proton therapy, spheres, HIPEC, HAI, surgery, nothing. Given that the CEA is down to 12.5 (!!!!) I'm thinking there must be other options now. Last CT scan showed "calcified right lobe but less" which I hope means the liver is re-generating over there. Left lobe has shrinking tumors.

And do NOT get me started on trying to get FMLA approval at my office!

Let's keep paddling,

Melissa
Caregiver to DH, dx age 50, mets to liver, MSS, KRAS wild
10/16: hemicolectomy, colostomy, CEA 114
11/16: FOLFOX started, Avastian added 12/16
2/17: CT scan shows 1 liver tumor shrinking, CEA 31
4/17: CEA 11, blood pressure medicine added
5/17: 1mm growth to lung nodes? liver stable, CEA 15, OX discontinued due to neuropathy
6/17: CEA 12


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