On a Clinical Trial but I Think We're Reaching the End

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inorganic8
Posts: 48
Joined: Mon Feb 27, 2017 6:13 pm

On a Clinical Trial but I Think We're Reaching the End

Postby inorganic8 » Thu May 23, 2019 12:51 pm

Hi. It's been a while since I stopped in here. I've been in hiding ever since I revealed BigCarrot.

Unfortunately, DH is not doing well. He fought long and hard for the last 2.5 years, and I'm still hoping for a miracle. I'll try to summarize our journey.

DH was diagnosed with stage 4 colon cancer in January 2017. He is a KRAS mutant (G12D) with a mucinous adenocarcinoma. He had metastisis all over the peritoneum. We were told the best we could hope for was 2 to 3 years. He immediately started on Folfirinox and did 8 rounds. Then he switched to Folfiri and did another 12 rounds. In December 2017, the cancer was clearly growing again. After that, we found a surgeon willing to do HIPEC. He had that done in January 2018. It was a 15 hour surgery. They removed a foot of colon, the entire omentum, a piece of his liver, the peritoneal wall, lots of lymph nodes, they scraped the bladder, and took off a tumor wrapped around the hepatic vein. They removed every bit of visible cancer and we hoped for the best.

It was back in June 2017. It was back in the colon, on the liver, and now in his lungs. They started him on Stivarga, which I think the CIA could use for an enhanced interrogation technique. After two months, he couldn't stand it any more. It wasn't helping anyway. Then, he got on a clinical trial for Keytruda plus ibrutanib. It was entirely unsuccessful. I pointed out to the oncologist that we had never tried Avastin and Dr. SoulCrusher (not his name, but he is a pretty gloomy guy) agreed it was worth a shot. DH started on Folfiri plus Avastin.

That lasted until December 26, 2018. I rushed DH to the hospital with severe pain. It turned out that he had a small bowell obstruction. After a week in the hospital, it had not resolved. We were given three options: 1) Have surgery to remove the obstruction (highest risk and highest reward), 2) Live off of IV nutrition (DH immediately nixed this), 3) go home and enroll in hospice and enjoy what's left. We chose option 1 and it went well. They sorted out the obstruction and in a few weeks he was eating well as long as we stuck to soft, low fiber foods. So I made a lot of scrambled eggs.

In March, we got him on another clinical trial for TAK-164. It's a Phase I dose escalation study and he got enrolled in a newly opened arm. This means he was given the highest dose yet of anyone in the United States. He got an infusion on Tuesday and all went well. Wednesday, no problem. Thursday, no problem. We thought this is great, he is finally on treatment that isn't making him miserable. Then Friday happened with the nausea and pain. It only got worse through the weekend. By the following Tuesday he was admitted into the hospital for pain management. He came home a few days later. While he was in there, they drained a pleural effusion. It wasn't a surprise that it was there, but it had apparently gotten bigger. The pathology report indicated No Evidence of Malignancy in the removed fluid.

Last week he had his second infusion and the misery started immediately. by Monday, we were back in the hospital and that's where he is now. He is nauseous most of the time even though they are loading him up on compazine and zofran. They even tried phenergan. The pain isn't as bad this time, but he is on a fentanyl patch for general pain control.

He's not getting better and I don't know if he will this time. I'd really like to get him home one way or another, either with him feeling better, or with hospice. I don't know what the future holds. None of us do, but I can't help but feel we are nearing the end. There really hasn't been too much to his life but suffering for the past couple of months. I really want that to stop (preferably with a miraculous turn around), but I have to be realistic.

thanks for listening... er... reading,
Kim
Wife to DH with CRC
Stage IV Diagnosis 1/27/17, Mets to Liver, Omentum, Peri
KRAS Mutation, G12, MSS
Folfirinox 2/8/17
Folfiri 6/14/17
Nov. scan - disease progression
1/24/18 15-hour HIPEC surgery.
June 2018 It's back, starting Stivarga
Aug. 2018 stopping Stivarga
Sep. 2018 clinical trial of Keytruda and ibrutanib
Dec. 2018 disease progression, stopped trial
Jan. 2019 small bowel obstruction and surgery
Mar. 2019 clinical trial TAK-164
May 2019 deteriorating rapidly

Gravelyguy
Posts: 164
Joined: Thu Jul 05, 2018 6:03 pm

Re: On a Clinical Trial but I Think We're Reaching the End

Postby Gravelyguy » Thu May 23, 2019 2:41 pm

I am so sorry, Kim.

Praying for your family in this tough time.

Dave
6/17 dx mCRC t3n1m1 very low rectal tumor 2 liver Mets 1.3 cm and .9 cm

6/17 begin 4 rounds Folfox w/Vectibix
9/17 short course radiation
10/17 rectal and liver resection LAR with coloanal anastomosis (no rectum left)
11/17-3/18 8 rounds Folfox
6/18 still NED!! Takedown
8/28/18 still NED! CEA .8 new low for me
10/18/18 colonoscopy clear
12/12/18 clear scans, CEA .9 still NED!
6/11/19 clear scans CEA 1.0

fumaros
Posts: 252
Joined: Sat Jul 02, 2016 10:26 pm
Location: Syracuse, NY
Contact:

Re: On a Clinical Trial but I Think We're Reaching the End

Postby fumaros » Thu May 23, 2019 2:43 pm

I am praying for your husband and your family.
Diagnosed 4/8/16, age 29
Colectomy 4/20/16
Stage III, T4bN1 Tumor 7x6.5x2. Muscinous Adenocarcinoma with SRC features
2/16 lymph nodes
Stage IV, Peri mets 5/2019
CEA 4/14/16 - 16.8
CEA 6/2/16 - 1.9
CEA 6/17/16 - 0.87, 7/16 - 1.33, 12/16 - 1.14, 4/17 - 0.6, 7/17 - 0.5, 10/17 - 0.9, 3/19 -5.8, 4/19 -10
FOLFOX began 6/24/16 - 11/25/16, FOLFIRI - 5/10/19
10 round FOLFOX, 2 round 5-FU & Leucovorin, 1 round FOLFIRI
MRI & CT 8/16 - NED, CT 12/16 - 10/17 - NED

Pyro70
Posts: 101
Joined: Mon Jan 21, 2019 4:25 pm

Re: On a Clinical Trial but I Think We're Reaching the End

Postby Pyro70 » Thu May 23, 2019 4:53 pm

Sorry to hear about your story. I had a similar diagnosis in Jan 2017 (tough month).

I’m sure you and/or your doctors have already looked into it, but have you confirmed that he doesn’t have mutations for some of the new (highly effective) targeted therapies? Was an NGS completed that looked for NTRK and ALK fusions or Her 2 amplifications? If the NGS was performed in 2017 it’s possible that those were not included.
Dx Jan 2017 stage IVB w/ PC age 35
FOLFOX
SEP 17 HIPEC 1, anastamosis leak
XELODA
MAR 18 HIPEC 2
JUN 18, ileo reversal and 2nd anastamosis leak

boxhill
Posts: 242
Joined: Fri Apr 06, 2018 11:40 am

Re: On a Clinical Trial but I Think We're Reaching the End

Postby boxhill » Fri May 24, 2019 12:40 pm

I'm so sorry, Kim.

I guess it all depends on how your husband feels about it. He may want to fight on for now, or he may want permission not to. I've never experienced having that conversation with someone: although I was there when we decided to do home hospice with my father, he wasn't part of the discussion at that point.

Maybe the hospital or your cancer practice has a counselor who specializes in this area of care who can work with both of you for as long as you need?
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemicolectomy
11 of 25 nodes,5 of 5 mesentery nodes
5mm liver met removed
pT3 pN2b pM1
BRAF wild, KRAS G12D
dMMR, MSI-H
5/4/18 FOLFOX
Neulasta 6/28
7/9/18 CT NED, 2mm indeterminate lung nodule
11/20/18 CT NED, Lung nodule calcified granuloma. Enlarged spleen.
12/20/18 Liver MRI 5mm liver met and 2 lymph nodes in porta hepatis, CT review shows progression on FOLFOX
12/31/18 Keytruda
6/5/19 Triphasic CT LNs shrunk to normal, Liver node stable

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LPL
Posts: 635
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

Re: On a Clinical Trial but I Think We're Reaching the End

Postby LPL » Fri May 24, 2019 7:00 pm

Sorry to hear that your DH is having such bad side effects Kim.
Is he feeling any better today?
I hope he will bounce back, can come home and that you will be offered something else that can be ’The Miracle’!
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->Jan-19 mets to lung
:!: Steroid induced hyperglycemia dx after 3chemo
Surgeries 2016: 3/18 Emergency colostomy
5/23 Primary+gallbl+stoma reversal+port 9/1 Liver mets
RFA 2019: Feb lung met

inorganic8
Posts: 48
Joined: Mon Feb 27, 2017 6:13 pm

Re: On a Clinical Trial but I Think We're Reaching the End

Postby inorganic8 » Fri May 31, 2019 7:29 am

Pyro70 wrote:Sorry to hear about your story. I had a similar diagnosis in Jan 2017 (tough month).

I’m sure you and/or your doctors have already looked into it, but have you confirmed that he doesn’t have mutations for some of the new (highly effective) targeted therapies? Was an NGS completed that looked for NTRK and ALK fusions or Her 2 amplifications? If the NGS was performed in 2017 it’s possible that those were not included.


Yes, my friend. He was tested for everything. His mutation burden is pretty minimal, which is aggravating.
Wife to DH with CRC
Stage IV Diagnosis 1/27/17, Mets to Liver, Omentum, Peri
KRAS Mutation, G12, MSS
Folfirinox 2/8/17
Folfiri 6/14/17
Nov. scan - disease progression
1/24/18 15-hour HIPEC surgery.
June 2018 It's back, starting Stivarga
Aug. 2018 stopping Stivarga
Sep. 2018 clinical trial of Keytruda and ibrutanib
Dec. 2018 disease progression, stopped trial
Jan. 2019 small bowel obstruction and surgery
Mar. 2019 clinical trial TAK-164
May 2019 deteriorating rapidly

inorganic8
Posts: 48
Joined: Mon Feb 27, 2017 6:13 pm

Re: On a Clinical Trial but I Think We're Reaching the End

Postby inorganic8 » Fri May 31, 2019 7:32 am

Thank you all for your kindness. We have enrolled Joe in hospice. He did everything he could to fight, and outlived many a doctor's predictions, but it's time for him to be comfortable and at peace. He sleeps most of the time and with the medications, he is pain free. That's the first time in a long, long time. I will miss him terribly, but the only realistic future for him was more suffering.

Cancer sucks
Wife to DH with CRC
Stage IV Diagnosis 1/27/17, Mets to Liver, Omentum, Peri
KRAS Mutation, G12, MSS
Folfirinox 2/8/17
Folfiri 6/14/17
Nov. scan - disease progression
1/24/18 15-hour HIPEC surgery.
June 2018 It's back, starting Stivarga
Aug. 2018 stopping Stivarga
Sep. 2018 clinical trial of Keytruda and ibrutanib
Dec. 2018 disease progression, stopped trial
Jan. 2019 small bowel obstruction and surgery
Mar. 2019 clinical trial TAK-164
May 2019 deteriorating rapidly

inorganic8
Posts: 48
Joined: Mon Feb 27, 2017 6:13 pm

Re: On a Clinical Trial but I Think We're Reaching the End

Postby inorganic8 » Fri May 31, 2019 7:35 am

And one more thing, because I need to vent a little:

You would think, that if you are 45 years old and facing losing your husband of 21 years, that if people can't be helpful, they can at least not burden you with additional bull-spit. You would be wrong. Thus far, I have managed to keep my internal monologue... well... internal. But I am under a lot of stress. I don't sleep much. I have a headache all of the time. So here are some things that may be coming out of my mouth soon.

No, random stranger that I just met 15 minutes ago, you do not know how I feel because your hamster died last week. I am not judging your grief. I'm sure you loved that hamster and as I have said repeatedly, it is not a competition. But you do not know how I feel.

No, guy who delivered an oxygen tank, I do not need you to tell me about our Lord and Savior Jesus Christ. I have my own relationship with our Lord and Savior Jesus Christ and judging by the fact that you feel the need to proselytize to a 45-year old woman about to lose her husband, he and I have a very different relationship than he and you. That's fine, but please just drop off the oxygen and leave.

No, Joe's coworker, you cannot come over and ask him last minute questions about project status and get advice for finishing them. Even if he could carry on a conversation, which he can't, I would toss your ass out, preferably into the nearest red ant pile. You will just have to figure it out your damn self.

No, well meaning new coworker, I am not interested in reading a website about a guy that claims to cure cancer he never had with carrot juice for the soul purpose of selling his quack science book.

These are just from the last two days. Humanity is truly amazing. Here are some honorable mentions from the past:

No, pharmaceutical companies are not hiding the cure so they can make more money.

No, he has not tried coffee enemas, and he isn't going to... ever... EVER.

And finally, now that the semester is over, I am going over to the local university and I will pay $30 to any kid willing to sell me their chemistry book. And I'm going to carry them around for every jackass that needs to tell me about alkalized water. (They are out there and they are organized.)

Them: You know alkalized water...
Me: Here's a chemistry book
Them: ... I was just going to say it cures...
Me: Turn to page 136
Them:... You see it works by...
Me: There's a whole section on pH adjustment. Look up the part where you add a weak base to a strong acid.

And that's when the stabbing will start.

It is truly amazing what people think is "helpful."
Wife to DH with CRC
Stage IV Diagnosis 1/27/17, Mets to Liver, Omentum, Peri
KRAS Mutation, G12, MSS
Folfirinox 2/8/17
Folfiri 6/14/17
Nov. scan - disease progression
1/24/18 15-hour HIPEC surgery.
June 2018 It's back, starting Stivarga
Aug. 2018 stopping Stivarga
Sep. 2018 clinical trial of Keytruda and ibrutanib
Dec. 2018 disease progression, stopped trial
Jan. 2019 small bowel obstruction and surgery
Mar. 2019 clinical trial TAK-164
May 2019 deteriorating rapidly

Brearmstrong
Posts: 81
Joined: Sun Mar 26, 2017 3:24 pm
Location: CT

Re: On a Clinical Trial but I Think We're Reaching the End

Postby Brearmstrong » Fri May 31, 2019 9:28 am

Inorganic8,

I wanted to reach out and reply to your message. My situation is reversed in that I am watching the strain on my husband (also married 21 years) and my children and how this impacts them. You hear all the blah blah blah on how caregivers have it tough but somehow most of society doesn't "get" the fact that those we are leaving behind are the ones who really suffer. They suffer long after we've gone to rest. Your comments are spot on and made me laugh even though this is no laughing matter. However, your husband's coworkers are seriously delusional for even considering that either of you give a CRAP about work related stuff. I know that despite working like a DOG for the last 26 years at my career and all that, I will be forgotten and a new person will be sitting in my office the next day. None of those things matter now. My hope for you and your family and close friends is that you can find some quiet time to just be together. PS. Don't worry about offending anyone or losing your cool- you have earned that right. xoxo

We are all here for you to vent, scream, cry.

-Brenda
45 F Jan 17 Mom 2 boys
tumor appendix/colon
Muc Adeno 4cm
mod diff G2 T4aN2
nodes 8/50
CEA 4.6 after surgery <.05
KRAS G12D MSS
FOLFOX Apr-sep 17
Clean CT scan Jul 2017 lung nodule 4mm, clean CT oct 17, CEA 3.4, nov 17 8.1. May 18 2.3 Jul 18 1.0 oct 18 1.3 Jan 19 1.3 Mar 19 1.0
Oct 2017 clean CT
Nov 17 PET para aortic nodes Stage IV
Folfori w/avastin Dec 17 CEA 7.1
May 18- surgery to remove nodes- 5 positive xeloda continues
Aug 18-CT NED Nov 18 CT clear, Feb 19 CT clear, May 19 CT clear

fumaros
Posts: 252
Joined: Sat Jul 02, 2016 10:26 pm
Location: Syracuse, NY
Contact:

Re: On a Clinical Trial but I Think We're Reaching the End

Postby fumaros » Fri May 31, 2019 11:10 am

I am so sorry that this is happening to your husband, to you and your family. Do not hesitate to vent as much as you need to. Do what ever it takes to get through this. Your family will be in my prayers.
Diagnosed 4/8/16, age 29
Colectomy 4/20/16
Stage III, T4bN1 Tumor 7x6.5x2. Muscinous Adenocarcinoma with SRC features
2/16 lymph nodes
Stage IV, Peri mets 5/2019
CEA 4/14/16 - 16.8
CEA 6/2/16 - 1.9
CEA 6/17/16 - 0.87, 7/16 - 1.33, 12/16 - 1.14, 4/17 - 0.6, 7/17 - 0.5, 10/17 - 0.9, 3/19 -5.8, 4/19 -10
FOLFOX began 6/24/16 - 11/25/16, FOLFIRI - 5/10/19
10 round FOLFOX, 2 round 5-FU & Leucovorin, 1 round FOLFIRI
MRI & CT 8/16 - NED, CT 12/16 - 10/17 - NED

User avatar
LPL
Posts: 635
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

Re: On a Clinical Trial but I Think We're Reaching the End

Postby LPL » Fri May 31, 2019 12:45 pm

inorganic8 wrote:
... I need to vent a little: ...

Wow - having been confronted with so many idiots :evil: in two days - I totally understand your reaction!!! I hope you have good support from relatives - I read about others who are having Big problems with for example in-laws.
Sending strengthening vibes to you and I hope your husband continues to be pain free.
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->Jan-19 mets to lung
:!: Steroid induced hyperglycemia dx after 3chemo
Surgeries 2016: 3/18 Emergency colostomy
5/23 Primary+gallbl+stoma reversal+port 9/1 Liver mets
RFA 2019: Feb lung met

Pyro70
Posts: 101
Joined: Mon Jan 21, 2019 4:25 pm

Re: On a Clinical Trial but I Think We're Reaching the End

Postby Pyro70 » Fri May 31, 2019 2:20 pm

Sorry to hear about the trouble. I don’t think you should censor yourself. Call out bad behavior.

I also agree with Brenda, spouses have it the worst. The worst part for cancer patients is knowing loved ones will carry this burden for the rest of their lives. For us patients it’s unfortunately/fortunately quite temporary :(
Dx Jan 2017 stage IVB w/ PC age 35
FOLFOX
SEP 17 HIPEC 1, anastamosis leak
XELODA
MAR 18 HIPEC 2
JUN 18, ileo reversal and 2nd anastamosis leak

Pyro70
Posts: 101
Joined: Mon Jan 21, 2019 4:25 pm

Re: On a Clinical Trial but I Think We're Reaching the End

Postby Pyro70 » Fri May 31, 2019 2:32 pm

inorganic8 wrote:
Pyro70 wrote:Sorry to hear about your story. I had a similar diagnosis in Jan 2017 (tough month).

I’m sure you and/or your doctors have already looked into it, but have you confirmed that he doesn’t have mutations for some of the new (highly effective) targeted therapies? Was an NGS completed that looked for NTRK and ALK fusions or Her 2 amplifications? If the NGS was performed in 2017 it’s possible that those were not included.


Yes, my friend. He was tested for everything. His mutation burden is pretty minimal, which is aggravating.



Most of us are in that boat unfortunately. Also the fact that there really still hasn’t been an MSS breakthrough is aggravating. Quite a few game changers at ASCO 2019 but not for CRC. Ugh.
Dx Jan 2017 stage IVB w/ PC age 35
FOLFOX
SEP 17 HIPEC 1, anastamosis leak
XELODA
MAR 18 HIPEC 2
JUN 18, ileo reversal and 2nd anastamosis leak

mpbser
Posts: 905
Joined: Wed Apr 19, 2017 11:52 am

Re: On a Clinical Trial but I Think We're Reaching the End

Postby mpbser » Wed Jun 12, 2019 5:30 am

inorganic,

sending you positive vibes. You have been in my thoughts
Wife 4/17 Dx age 45
5/17 LAR
Adenocarcinoma
5 x 4 x 1 cm
low grade
T3 N2b M1a
Stage IV A
8/17 Sub-total colectomy
2nd tumor 5.5 cm T1 N0
lymph nodes: 9 of 96
CEA: 2.9 to 2.2
MSS/MSI-L
Lynch no; KRAS wild
Immunohistochemsistry Normal
Tumor: MTOR, APC, TP53
Fall 2017 FOLFOX shrank the 1 met in liver
1/18 Liver left hepatectomy seg 4
5/18 CT clear
12/18 MRI shows 1 liver met
3/7/19 Resection & HAI
4/1/19 Folfiri & FUDR
5/13/19 HAI pump catheter dislodge, nearly hemorrhaged to death
6/10/19 5FU


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