Wives of husbands with Stage IV Colon Freaking Cancer

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mhf1986
Posts: 31
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, Avastian added 12/16
2/17: CT 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, 7/17 CEA 14

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: 4917
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!

User avatar
LPL
Posts: 267
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!

User avatar
LPL
Posts: 267
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


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