Update: It's just a matter of time

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Update: It's just a matter of time

Postby flyboy22 » Wed Nov 22, 2017 12:45 am

Hello friends,

I still mostly lurk here on a regular basis, and read many of your stories. I'm happy to see the positive news from so many.

I'm sad to be the bearer of bad news.

My wife and I searched for clinical trials since the end of March through the summer and into August.

All to no avail. Either we were on wait list and trial filled before they got to her name, or more often than not, protocols changed and either she no longer met inclusion/exclusion requirements, or the openings were pushed months back waiting for formal approvals from pharma/institution conducting the trial.

We even had some initially positive responses for the TIL trial at NCI. I submitted my wife's medical docs for a KRAS (G12V) trial that popped up this summer. And the NCI admitting nurse called me back wondering if my wife would be interested in the TIL trial. Of course we would be!

They really liked her because of the easy access to her supraclavicular tumor. They liked everything they read in the documents and scans they saw, though they were concerned about the numerous lung mets, small though most of them were.

So they asked us to come out to Bethesda and have more scans, meet with more nurses, docs, and surgeons. We did that over the course of two days the first week of August.

My wife was still quite healthy and mobile, which surprised the admitting nurse some.

She had developed somewhat of a consistent cough toward the end of summer, which we knew was from the lung mets, but the medical team didn't seem too concerned about it.

After all our meetings, the chief surgeon and post doc fellow said they would recommend her to be included at the next committee meeting on Monday. They even began planning when she could fly out to remove the supraclavicular tumor and we also received permanent photo IDs since we would be visiting often. We left that thursday with high hopes, even though going in to it, I new her numerous lung mets would be a difficult hurdle to overcome, especially since there is quite the delay between tumor removal and reinjection of harvested T-cells three months later. In other words, a lot of time for cancer to grow.

Still, the evaluation team after all their scans, tests, and probing, wanted to admit her to the trial. So I figured we had a good chance.

Monday came though with bad news. The committee denied her acceptance to the TIL trial because they were too worried about the lung growth, especially since they had grown about 20% in between scans that were 5 weeks apart.

That was a rough moment.

As none of the other trials were working out, we knew we needed to start something. So she decided to begin Longsurf at the end of August.

Well, then Harvey came and messed everything up around here. We couldn't get to MD Anderson for two weeks to get the Longsurf pills and other medication.

Meanwhile she began narcotics to help with the increasingly frequent coughing and shortness of breath.

So she began longsurf mid september and did two rounds of two weeks on, two weeks off.

At the end of the second round, she was tired of chemo, and wasn't sure she wanted to do the third round. Her Onc scheduled three rounds with blood work in between and scans at the end.

But her blood work after second round showed that her WBC was too low, so she would have to delay beginning of 3rd round anyway. Plus suddenly her CEA spiked to 8.9. That when CEA has never been above 2.1 during anytime in the past 3 years with this disease, not even pre surgery. CEA simply wasn't a marker for her. Until now.

The doc decided to do scans so we could see if longsurf was even working, and she didn't want to continue if it wasn't. Stivarga was out in our minds as sooo many doctors we met during clinical trials searching seemed to think it was a good thing we hadn't tried it yet. She didn't think the likely huge decrease in quality of life with Stivarga was worth any potential gain.

Well, scans came back about two weeks ago, and nothing was good. The lung mets have all grown, and now consolidated in some areas. She has new lymphangitic carcinomatosis and lower lobe predominant diffuse interlobular septal thickening.

Increased size of supraclavicular, aortopulmonary window, bilateral hilar, and subcarinal metastatic lymphnodes. Increased size of retroperitoneal (aortocaval, etc.) lymphnodes, and common iliac lymph nodes.

3mm hypodense spot in liver was also seen, likely cancerous, and right ovary now 5.5 cm that is considered metastatic along with increased size of left ovary.

oh, and her CEA was now 13.8, a jump within just a week or two.

Like I said. Nothing good.

Doc was great about giving us the bad news. It was tough for him because she is about his age. He recommended we begin hospice, which we have.

She now needs oxygen regularly and moved onto more morphine to help with shortness of breath and hydrocodone to help with persistent coughing.

We don't know how much time, but doc thinks 4-8 weeks.

It's a difficult thing to swallow, even though we honestly didn't expect good news. We both could sense that the cancer was growing and that Longsurf wasn't helping.

So we'll live our lives as much as we can, pray and hope that she gets to see her 41 birthday, Christmas, and the New Year.

Thanks for your continued help and support as I've reached out to the board in general and some of you in particular to get some help and guidance as we proceeded down this journey.

I pray and hope most of you fare better.
DH to wife 38, DX 12/14, Rt. clctmy Xmas
St. IIIB, pT3N2aM0, 4/27 nodes, mod. dif
KRAS (G12V), APC, TP53, MSS, vasc/lymph/perineural +
TX FOLFOX 1/15-6/15 (4 no oxi)
7/16 mets to retropertnl, iliac, supclavic. nodes
TX 9/16 FOLFIRI+Avast
1/17: Numerous bilateral lung mets; nodes stable/growth; FOLFIRI fail
TX 1/17 FOLFOX+Avast.
3/17: lung mets grow/new, nodes stable/growth, FOLFOX fail
no clinical trials
TX 9/17 Lonsurf
11/17 growth in lungs, nodes; mets to ovary, abdomen, and likely liver
11/17 hospice

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Joined: Wed Aug 16, 2017 12:13 am

Re: Update: It's just a matter of time

Postby Mercy110 » Wed Nov 22, 2017 4:21 am

I am so sorry about your news. It is rely difficult to see someone you love suffering. Reality is too bitter to swallow.
Prayers to your family, especially to your wife, to stay strong. God Bless.
Daughter of Mum age 56, NRAS-mutate Q61R
2017-05: Surgery done. Temporary stoma. Path: T4N1M0. Stage3C. Chemo - Xeloda. Rejected radio. CEA: 7.3
2017-08: CEA: 8.0 (1st) CEA: 9.8 (2nd) CT Scan: Multiple lung nodules. Stage4.
Start from 2017-09: Chemo - FOLFOX + Avastin, 85% for serious diarrhea CEA: 7.0, 4.7 (10/10), 3.7 (11/10), 2.9 (12/3)
2017-11: Stable Multiple Lung Nodules from CT


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Joined: Fri Feb 10, 2006 7:04 pm

Re: Update: It's just a matter of time

Postby Ron50 » Wed Nov 22, 2017 6:34 am

Hugs and peace to you both, Ron.
dx 1/98
st 3 c 6 nodes
48 sessions 5Fu/levamisole
no recurrence cea <.5
numerous l/t side effects of chemo

Posts: 228
Joined: Thu Sep 22, 2016 3:31 pm

Re: Update: It's just a matter of time

Postby TXLiz » Wed Nov 22, 2017 7:11 am

Your post breaks my heart.

I am so sorry. Prayers for you and your wife and family.
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"
Colonoscopy 10/5/2017 clear

Posts: 111
Joined: Thu Jul 27, 2017 7:44 am

Re: Update: It's just a matter of time

Postby veckon » Wed Nov 22, 2017 7:39 am

I am so sorry.
27 yo male
Metastatic rectal cancer diagnosed 12/16
Liver metastases and peritoneal carcinomatosis
Lynch syndrome, MSI-H
Failed liver resection 3/17
FOLFOX6 12/16 - 05/17
Keytruda 5/17 - present
@Memorial Sloan Kettering

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Joined: Fri Jul 21, 2017 3:43 am

Re: Update: It's just a matter of time

Postby NHMike » Wed Nov 22, 2017 7:46 am

I'm very sorry to hear about your wife as I also have a KRAS mutation. I looked up G12V at https://targetedcancercare.massgeneral. ... V-(c-35G-T).aspx and see the paragraph:

There is no clear association between activating KRAS mutations and poor prognosis in colorectal cancer. This may be attributed to allele-specific differences, as the KRAS G12V mutation has specifically been associated with worse survival. In addition, the presence of BRAF mutations significantly worsens the prognosis and clinical trials looking for the effect of KRAS on long-term outcomes should control for this factor.

I didn't know that there were worse outcomes in the KRAS family with some mutations.
6/23/17: ER rectal bleeding; Colonoscopy+Biopsy
7/13: Stage 3B rectal cancer. T3, N1b, M0. 5.2 x 4.5 x 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6 mm, 5 x 5 mm
7/31-9/8: Xeloda 3,400 mg/day+radiation
7/5: CEA 2.7; 8/16: 1.9; 9/8: 1.8. 11/30: 0.6
10/6: 2.7 x 2.2 x 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 mm (-75%), 5 x 3 mm (-40%). 5.1 CM from AV
10/30: Surgery: LAR, Temp Ileostomy
Path report: Tumor regression grade: 0 (complete response).

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Facebook Username: Robin.lawthers
Location: Florida

Re: Update: It's just a matter of time

Postby Robino1 » Wed Nov 22, 2017 8:23 am

I am so sorry. I pray for strength for the both of you and your families.
At 54 2014 1st colonoscopy colon cancer detected.
Colon resect right ascending
margins clear. No chemo Stage II
Distended abd, pain in intestines.
CT scan shows seeding
Lap diag - cancer on the omentum
CEA 217
CEA 219
PET cancer on the omentum, susp activ right abdomen
FOLFOX started 6/17
CEA 202
Not genetic
8/29/17 CT scan showed excellent melting of the tumor. Chemo is working!
Ascites is gone
CEA: 9/30/17 -109; 10/12/17 - 99.1; 11/4/17 - 90.7; 11/30/17 - 70.7
BRAF V600e mutation :(

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Joined: Wed Sep 20, 2017 6:14 am

Re: Update: It's just a matter of time

Postby Ampes » Wed Nov 22, 2017 8:49 am

So sorry for your family!!
DH diagnosed 9/17 57 yrs
CRC ascending 7x3 cm tumor
T3N0M0 stage 2A well differentiated MSS
LAR right hemicolectomy 10/11/17 clear margins

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Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: Update: It's just a matter of time

Postby susie0915 » Wed Nov 22, 2017 8:56 am

I am so sorry. Prayers for you and your family.
58 yr old mother of 3 Dx @ 55
5/15 DX T3N0MO/ 2A
6/15 5 wks of chemo/rad
7/15 sigmoidoscopy/scar tissue left
8/15 Pet scan NED
9/15 LAR
0/24 nodes
10/15 Bowel blockage. 3 1/2 weeks in hospital,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 Clear CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 CT 4mm lung nod onc thinks scar tissue
monitored for autoimmune disorder/interstitial lung disease
7/17 no change lung nodule
10/17 Clear CT
11/17 CEA<.5

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Joined: Wed Nov 19, 2014 11:11 pm

Re: Update: It's just a matter of time

Postby lpas » Wed Nov 22, 2017 11:14 am

I'm so sorry to hear this. :( I know how incredibly hard you've worked to help your wife these last three years.
11/14 Dx sigmoid CC @ 45yo
12/14 Colectomy + hysterectomy
Stage IIIB, T3N1bM0, 2/20 nodes, MSS, G2, KRAS(A146T), TP53, SMAD4, ERBB2, CEA 1.0
2/15-7/15 XELOX, Celebrex & many supplements
3/16 Ovarian mass removed. Benign fibroid
9/16 clean colonoscopy
3/17 clean CT
Ongoing Celebrex, cimetidine & other carefully-targeted supplements
Post-chemo CEA 3.0, 2.5, 2.3, 2.0, 1.6, 1.3, 1.8, 2.1, 1.8, 2.0, 1.8, 1.9, 1.7, 1.5, 1.6, 1.5, 1.4, 1.4, 1.3, 1.3, 1.6, 1.6, 1.3
Mom to a 3 & 6yo

Achilles Torn
Posts: 90
Joined: Fri Dec 16, 2016 2:41 pm

Re: Update: It's just a matter of time

Postby Achilles Torn » Wed Nov 22, 2017 2:06 pm

I am sad to read this news and feel so badly for you and your wife. I've followed your story as my stage 4 was also distant lymph nodes and always hoped for the best for you.
It sounds like you have researched everything and I'm not aware of your entire medical history, but if you haven't, you could try a few alternative therapies that might slow growth and improve QOL with almost no side effects. With KRAS - IV vitamin C comes to mind...

I suppose I'm just trying to reach for something that could help because that is my nature.

I am so sorry.
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.

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Joined: Thu Aug 18, 2016 7:31 am

Re: Update: It's just a matter of time

Postby zephyr » Wed Nov 22, 2017 3:00 pm

Achilles Torn wrote:... if you haven't, you could try a few alternative therapies that might slow growth and improve QOL with almost no side effects. With KRAS - IV vitamin C comes to mind...

I have a KRAS mutation and the IV vitamin C changed the quality of my life, quite dramatically for the better.
Oct-09 Stage I CC
Jun-16 Stage III (T3 N1c)
Jun-16 Surgery
Jul-16 Probable Stage IV with inoperable lung mets
Jan-17 Dropped Oxi, continuing with 5FU & Avastin
Aug-17 Dropped Avastin, continuing with 5FU
Dec-17 Chemo stopped, lung mets growing but CEA stable, considering other treatment options

Posts: 72
Joined: Fri Sep 01, 2017 1:28 pm

Re: Update: It's just a matter of time

Postby SweetC80 » Wed Nov 22, 2017 6:33 pm

I'm so sorry things haven't been going better for your wife. Thoughts and prayers.
Mom's history
68yo at diagnoses
12/16 Stage IIIb Rectal Ca CEA 1.2
1/17-2/17 Chemoradiation CEA 4.4
5/17 Entire Colon, Rectum and Anus removed Perm Ileostomy Bag
9/17 Stage IVb 9cm Liver Met and suspicious 7mm Lung Nodule CEA 197
9/17 Irincotecan CEA 160
10/17 Confirmed KRAS Positive CEA 210
11/17 Met growths, Liver 10cm and Lung 8mm CEA 425
12/17 Onco Apt to discuss options after treatment for abscess. Mom's not giving up

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