Wives of husbands with Stage IV Colon Freaking Cancer

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mhf1986
Posts: 50
Joined: Sat Mar 11, 2017 8:30 pm
Location: near DC

Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby mhf1986 » Sun Jul 09, 2017 7:03 pm

Ladies, thank you for all your support. We had a good talk Friday night and it appears he is more at peace with this than I am. He will continue to fight but understands the odds. He does like hearing about the research and people who have beaten the odds. His big concern with hospice is not ever wanting to go back into the hospital for weeks at a time (those 2 weeks in October were just horrible) and the FDA making certain pain drugs unavailable. Our doctor keeps asking about pain, says it will come. Not really what we need to hear now, I would prefer they treat him like he is living, not like he's about to die.

For the short term, it's monthly CEA test tomorrow and hoping it's still around the 12 mark as it was in June. Then a CT scan in August. Then a consult with a Dr at Georgetown who treated a work buddy. This Dr is apparently a pro at spheres and they have Cyberknife and Proton too, none of which our Dr thought were reasonable.

Headed to NYC on the train in 2 weeks to see special exhibits at Natural History!

Hugs to all, Melissa
Caregiver to DH, dx age 50, mets to liver, MSS, KRAS wild
10/16: hemicolectomy, colostomy, CEA 114
11/16: FOLFOX started, Avastin added 12/16
2/17: 1 liver tumor shrinking, CEA 31
4/17: CEA 11, blood pressure medicine added
5/17: CEA 15, OX discontinued due to neuropathy, Vit D added
10/17: CEA 26, CT scan scheduled for 10/30

justbreathe
Posts: 4
Joined: Thu Jun 22, 2017 10:01 am

Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby justbreathe » Tue Jul 11, 2017 10:09 am

I'm not sure if I'm doing the reply right on here and if not bare with me.
You asked if the team of doctors were working together and said only the surgeon can make a decision on removing the cancer.
My husband started out with a group of local doctors in the Cancer Institute in our area. Oncologist, Radiologist and a Surgeon that specializes in Colon/Rectal Cancer. In the beginning the surgeon felt that with Chemo and/or Radiation to shrink the tumor he could do the resection but where it was located there was a good chance he could end up with a colostomy for life. DH thought that sounded better than Cancer. After the first PET Scan showed the cancer had spread that was when Oncologist 1 said he was treatable not curable and my husband went for a second opinion.
Oncologist 2 (who was not associated with our local group of doctors) seemed optimistic that Chemo would shrink the tumors enough for surgery. After 12 rounds it worked on some of the small ones but the main tumor has doubled in size and the others are coming back. Now his thoughts are the same as Oncologist 1 - Treatable, not curable.
Oncologist 2 had a meeting with our Radiologist and the Surgeon that was originally going to do the resection and DH was under the impression that his new treatment (radiation/Xeloda) was still going to end with surgery,
Yesterday after treatment he saw the Radiologist and was told that instead of 30 sessions they were only doing 14. He said this was only to make him more comfortable. There won't be any surgery. The surgeons office never called back after the meeting to set up an apt.
I understand my husband is ill and this is not going to go away, but what I don't understand is, why is it that 3 professional Cancer Specialist can't come up with a way to look you in the eyes and tell you what is really going on instead of looking at the floor and talking in circles.

DH will probably have me call somewhere for a third opinion. And if he ask me to I will. Not because I think his doctors are wrong but because he wants to find someone that will give him the answer he wants to hear. And Because I am a wife of a husband with Stage IV Freaking Cancer.
DH @ 52
DX: 6/21/ 2016
Stage IV RC Lower rectum
Mets in lung and liver
Inoperable
Chemo 12 rounds 11/14/2016 - 05/17/2017 (shrinkage in tumors lungs and liver)
Folfox 6 : Oxaliplatin ;Leucovorin ; 5-FU (fluorouracil)
Rad/Chemo 06/16/2017(Xeloda 14 treatments to make him more comfortable) Ongoing

Lee
Posts: 5185
Joined: Sun Apr 16, 2006 4:09 pm

Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby Lee » Tue Jul 11, 2017 12:57 pm

justbreathe wrote:I'm not sure if I'm doing the reply right on here and if not bare with me.
You asked if the team of doctors were working together and said only the surgeon can make a decision on removing the cancer.
My husband started out with a group of local doctors in the Cancer Institute in our area. Oncologist, Radiologist and a Surgeon that specializes in Colon/Rectal Cancer. In the beginning the surgeon felt that with Chemo and/or Radiation to shrink the tumor he could do the resection but where it was located there was a good chance he could end up with a colostomy for life. DH thought that sounded better than Cancer. After the first PET Scan showed the cancer had spread that was when Oncologist 1 said he was treatable not curable and my husband went for a second opinion.
Oncologist 2 (who was not associated with our local group of doctors) seemed optimistic that Chemo would shrink the tumors enough for surgery. After 12 rounds it worked on some of the small ones but the main tumor has doubled in size and the others are coming back. Now his thoughts are the same as Oncologist 1 - Treatable, not curable.
Oncologist 2 had a meeting with our Radiologist and the Surgeon that was originally going to do the resection and DH was under the impression that his new treatment (radiation/Xeloda) was still going to end with surgery,
Yesterday after treatment he saw the Radiologist and was told that instead of 30 sessions they were only doing 14. He said this was only to make him more comfortable. There won't be any surgery. The surgeons office never called back after the meeting to set up an apt.
I understand my husband is ill and this is not going to go away, but what I don't understand is, why is it that 3 professional Cancer Specialist can't come up with a way to look you in the eyes and tell you what is really going on instead of looking at the floor and talking in circles.

DH will probably have me call somewhere for a third opinion. And if he ask me to I will. Not because I think his doctors are wrong but because he wants to find someone that will give him the answer he wants to hear. And Because I am a wife of a husband with Stage IV Freaking Cancer.


So sorry for all that you and your husband have been through. My recommendation, start a new thread on the main board and include all of the above information. You want to start your own thread so that new eyes will see this. I'm wondering if immune therapy may be the way to go with your DH, because standard chemo may not be working. We have a few people here who are knowledgeable about immune therapies.

Good luck,

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 10 years and counting!

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LPL
Posts: 290
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby LPL » Wed Jul 12, 2017 6:12 am

Hi Melissa,
So Nice to hear about the "good talk" you and your DH had. It is Not easy this, knowing how to act as a caregiver... Your upcoming trip to NYC sounds like a fun 'normal' mini-vacation :)
I hope that the next blood tests & the CT (in Aug) will be good. You wrote before that " Oncologist said inoperable because he believes if they can't get at all, there's no point in going in ". Sorry if I've asked this before but have your DH's Surgeon said the same as the Onc? Hoping that the meeting with the Dr in Georgetown will give new treatment alternatives! I presume that Dr is a surgeon?

Hi Justbreath,
Thank you for explaining more.
There is a lot that I don't understand of how your DH is treated :? and that you feel the Dr's isn't explaining things to you is so Bad :!:
I totally agree with member Lee who wrote:
"My recommendation, start a new thread on the main board and include all .. information. You want to start your own thread so that new eyes will see this. "

Please follow that advice! Many members with great knowledge will see and give you valuable info.
Here is a link to 'start a new thread/topic'
posting.php?mode=post&f=1

My Best Regards to All
Lena
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

mistydawn_67
Posts: 6
Joined: Tue Nov 01, 2016 9:21 pm

Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby mistydawn_67 » Wed Jul 12, 2017 8:48 pm

I have no idea how to reply to specific message on the forum... LPL, He was being monitored with CT scans, colonoscopy, and blood work.. Our insurance did not pay for the PET scan and our doctor did not advocate for it. We got one several months later. Lack of trust with our doc led us to MD Anderson. His Doc in Houston said surgery is out of the question. It will make it worse. Thanks for the info on staging!

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LPL
Posts: 290
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby LPL » Fri Jul 14, 2017 3:20 pm

mistydawn_67 wrote:I have no idea how to reply to specific message on the forum... LPL, He was being monitored with CT scans, colonoscopy, and blood work.. Our insurance did not pay for the PET scan and our doctor did not advocate for it. We got one several months later. Lack of trust with our doc led us to MD Anderson. His Doc in Houston said surgery is out of the question. It will make it worse. Thanks for the info on staging!

Hi Misty,
To reply to someone's post you can do like I did now. I clicked on the " symbol at the upper right of your post.
If you only want to quote part of the text (for example a question) you can delete the other text when you have it where you write your reply. Butt important, make sure that you don't delete the [xx] symbols at the start and end of the quote.
I clicked again now on the " symbol at the upper right of your post and deleted everything but the question. It looks like this:
mistydawn_67 wrote:I have no idea how to reply to specific message on the forum... LPL,

Thank you for your reply. Now I understand. Good that you looked for a 2nd opinion. Wishing your DH will respond well to the treatment -> remission :)
Please stay with us and post.
Kind regards
Lena
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

mhf1986
Posts: 50
Joined: Sat Mar 11, 2017 8:30 pm
Location: near DC

Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby mhf1986 » Wed Aug 02, 2017 7:28 pm

Hello Ladies, Long time no talk to! CT scan this morning and had results within an hour. Oncologist apt on Tuesday to discuss but basically liver is still stable, tiny shrinkage for a few tumors, tiny growth of another. Couple of lung thingys showed growth of 1 mm on a few again which is concerning as we were told back in November that these were calcifications so I'm not completely sure that's true now. Or they measured wrong again.

We are going for a consult sometime with another oncologist and a radiologist at a different teaching hospital. Want to learn about spheres and protons. I honestly don't know about surgery. There are a ton of calcified lymph nodes throughout the abdomen so obviously this disease tried to spread. I just don't know if he's eligible OR if I could talk him into HIPEC or anything. He keeps harping on the statistics...I guess math PhD's do that but it's driving me nuts.

How are the rest of you doing?

Melissa
Caregiver to DH, dx age 50, mets to liver, MSS, KRAS wild
10/16: hemicolectomy, colostomy, CEA 114
11/16: FOLFOX started, Avastin added 12/16
2/17: 1 liver tumor shrinking, CEA 31
4/17: CEA 11, blood pressure medicine added
5/17: CEA 15, OX discontinued due to neuropathy, Vit D added
10/17: CEA 26, CT scan scheduled for 10/30

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LPL
Posts: 290
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby LPL » Wed Aug 09, 2017 9:36 am

Hi Melissa,

Sorry it took a while for me to say something here.
I have been taking a brake.. The thing is that I can finally walk good enough to walk in my forest - and I have SO needed to take my walks in the forest to charge my batteries! I feel a lot better :-) We do say to others and we read, that it is important for caregivers to take care of ourselves don't we? Well I have finally been doing that now for a while.

So I hope you had a good Onc appointment yesterday!
Am I reading your Signature correct and it was?

Did you & your DH have a nice time in NYC and the exhibits at Natural History Museum?

All the best to you Melissa & to all in this thread.
Like Melissa, I also wonder how you all are.
/Lena
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

mhf1986
Posts: 50
Joined: Sat Mar 11, 2017 8:30 pm
Location: near DC

Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby mhf1986 » Wed Aug 09, 2017 6:46 pm

Hi All, FIrst off, I see I have PMs and I can read them and am learning how to reply so be patient with me!

Second, yesterday dr said we motor on for 2-4 months with the Fol+Avastian and then CT again. He said the 1mm lung thingys can't concern anyone at this point.

Still praying for us all. I noticed my daily bible verse yesterday was on patience which was the second one on that topic recently....

Hugs, M
Caregiver to DH, dx age 50, mets to liver, MSS, KRAS wild
10/16: hemicolectomy, colostomy, CEA 114
11/16: FOLFOX started, Avastin added 12/16
2/17: 1 liver tumor shrinking, CEA 31
4/17: CEA 11, blood pressure medicine added
5/17: CEA 15, OX discontinued due to neuropathy, Vit D added
10/17: CEA 26, CT scan scheduled for 10/30

JJH
Posts: 164
Joined: Mon Apr 24, 2017 7:26 am
Location: Europe

Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby JJH » Fri Aug 18, 2017 6:08 am

There's a new Colon Club blog post on caregivers, for those who might be interested:

Fighting the Fight: Through a Caretaker's Eyes
http://colonclub.com/fighting-the-fight-through-a-caretakers-eyes/
DX 2012: Stage IIc
Locations: upper-rectum T4b + mid-sigmoid T4b
Surgery: Open LAR + temp ileo
TX: chemo/rad (28 days) + Xelox (3 cycles)
Ileo reversal
5 years surveillance
7/3/2017: Final 5-year report -
"complete remission ... cured'

mhf1986
Posts: 50
Joined: Sat Mar 11, 2017 8:30 pm
Location: near DC

Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby mhf1986 » Thu Aug 24, 2017 4:44 pm

Consult scheduled! We are on for Sept 8 at Georgetown to discuss other options such as proton, spheres, surgery (???), etc. Now I just have to get 4 CT scans on CD from the current hospital.

DH wants to tell current onc at next appointment that we are going for a consult, I'm not in favor of it yet. Any opinions?

M
Caregiver to DH, dx age 50, mets to liver, MSS, KRAS wild
10/16: hemicolectomy, colostomy, CEA 114
11/16: FOLFOX started, Avastin added 12/16
2/17: 1 liver tumor shrinking, CEA 31
4/17: CEA 11, blood pressure medicine added
5/17: CEA 15, OX discontinued due to neuropathy, Vit D added
10/17: CEA 26, CT scan scheduled for 10/30

User avatar
LPL
Posts: 290
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby LPL » Tue Aug 29, 2017 2:52 am

Hi Melissa,
Will be thinking of you on Sept 8 - hoping it will be a good meeting!!
Tell your current Onc ?
My hubby would say the same as yours and I would be like you :wink: but I think they are right. Best to be honest I belive and it is 'normal' for Patients to want 2nd opinions - isn't it? Besides when you will be requesting Copies of the CTs 'they' probably suspect something anyway?
All the best !
Lena
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

mhf1986
Posts: 50
Joined: Sat Mar 11, 2017 8:30 pm
Location: near DC

Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby mhf1986 » Fri Sep 08, 2017 8:28 pm

NUTS! Consult Appointment postponed to Sept 22 as oncologist got called to something and we can't get in next week. CEA slightly up so we are not happy campers.

Next meeting with current oncologist is Oct 3 so will discuss findings then. Expect he will order usual 3 month CT scan.

No word from Sarah lately...???

M
Caregiver to DH, dx age 50, mets to liver, MSS, KRAS wild
10/16: hemicolectomy, colostomy, CEA 114
11/16: FOLFOX started, Avastin added 12/16
2/17: 1 liver tumor shrinking, CEA 31
4/17: CEA 11, blood pressure medicine added
5/17: CEA 15, OX discontinued due to neuropathy, Vit D added
10/17: CEA 26, CT scan scheduled for 10/30

User avatar
LPL
Posts: 290
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby LPL » Mon Sep 11, 2017 7:32 pm

Hi Melissa,
Sorry to hear about postponed appointment :(
These dates we have in the calender are a sorce for getting 'nervous' (for lack of a better word) but I think it's even worse when they are changed. I hope this new date Sept 22 will happen! and that you will get a good 2nd opinion.
Husband has his next check up soon, blood tests later this week and CT-scan & Onc visit Sept 21 - so almost the same day as your consult appointment. Then he has a colonoscopy Oct 5. So there are many opportunities now to be nervous...
It has been silent from our friends in this thread..
I hope everyone is OK !
All the best to you Melissa and I will be sending good vibrations and thinking of you September 22
/Lena
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

mhf1986
Posts: 50
Joined: Sat Mar 11, 2017 8:30 pm
Location: near DC

Re: Wives of husbands with Stage IV Colon Freaking Cancer

Postby mhf1986 » Fri Sep 22, 2017 3:28 pm

Hey all,

Consult with another university hospital today. Good information but no "magic" of course. My biggest beef is that we got the scans and he didn't even look at them, just read some reports. He was also not complimentary of the famous Sleen/NIH trial, had some patients of his that went through it with no results.

Our biggest take-aways:
+ try to switch to Xeloda pills (asked about it, now will push for it)
+ investigate CEA vaccine trial at NIH as that can be done concurrently (anyone done this?)
+ enormous breakthroughs in the past 3 years so who knows what the next 3 years will bring
+ do more molecular testing on a spot when it shows growth

Repeats of what we knew:
+ too many mets in liver to be resectable
+ lung thingys unknown without biopsy
+ consider cyberknife/proton/spheres later if a particular spot is showing more rapid growth than others
Caregiver to DH, dx age 50, mets to liver, MSS, KRAS wild
10/16: hemicolectomy, colostomy, CEA 114
11/16: FOLFOX started, Avastin added 12/16
2/17: 1 liver tumor shrinking, CEA 31
4/17: CEA 11, blood pressure medicine added
5/17: CEA 15, OX discontinued due to neuropathy, Vit D added
10/17: CEA 26, CT scan scheduled for 10/30


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