Need some new trial options/Running out of Time

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Ceebo
Posts: 132
Joined: Sat Feb 14, 2015 9:15 am
Location: Southwest Michigan

Need some new trial options/Running out of Time

Postby Ceebo » Sat Dec 26, 2015 7:51 am

Good Morning!! Hope everyone had a wonderful holiday with your family or friends--although I know there are some of you that are actively struggling today due to this disease! Unfortunately, I know that is just the reality of where some of us are on this cancer journey!

I just wanted to update you on my husband's situation since he's been taking TAS-102!. He only took two cycles, got scans, and showed significant disease progression in the peritoneum, liver, and lungs--BAD NEWS!! So, of course drug was stopped a few weeks ago! Now we are looking for some other options. Unfortunately, we live in Michigan, and there just aren't as many trials available in the midwest as there are on the east or west coasts. But--we found one trial at Karmanos in Detroit, MI, that may offer us some hope! I thought I would share this information in case it might help someone else. The Phase 1 trial will be looking at the interactions between two drugs that are already FDA approved--Crizotinib and itraconazole (So the purpose of the trial is not looking at how these drugs work for patients with colon cancer). What is good for my DH is that Crizotinib is a drug that was identified via the Foundation One Report to be a possible choice to use for his colon cancer treatment, due to him having a c-MET amplifcation. Currently,it has only been FDA approved for a particular type of lung cancer. So we hope to be able to get some benefit from this drug and at the same time add to the data pool for colon cancer research. We won't find out for about 10 days whether he will be accepted into the trial.

I am also beginning to do some research on what trials are available on the west coast, since we have a son who lives in LA, CA. I'm looking into the RRx-001trials at the University of CA . I also want to find out more about where the Xilonix trials are being done at. It's been difficult to make much progress with my searches due to the holidays. It has really slowed down a lot of communication at the various sites.

We are so thankful that although the scans show significant disease progression, my DH is still staying very active and having a good QOL. The team at Karmanos are very happy to see how well he is doing; no pain; almost normal labwork; great attitude. We believe God is doing a daily miracle in his life, to keep him this strong and active, in spite of the negative information from the scans. But--we know we are running out of time and I am constantly searching for what is available to help give my DH more time--but also a good quality of life. I am a nurse, so I have been the one who is doing all of the research and studying the options. I am thankful that I can use my knowledge to help us on this journey!!!

We appreciate this forum so much!!! If you have any other ideas, or questions, please let me know!!! We are all in this together and we need to support each other the best ways that we can!!

Thankful and Hopeful,
Cindie
DH 64 Stage 4 on 4/14 ; cecal tumor; 5+ nodes ; mets to liver; colon resection
5/14 FOLFOX
9/14 - Liver surgery aborted; peri mets
10/14 CT mult.1-2 mm lung mets; FOLFIRI & Avastin
1/15 CT -liver & lung mets shrinking
3/15 PET - ? New met. site colon; CEA rising
7/15 Chemo has failed; looking for clinical trial
9/29/15 started TAS-102 trial
KRAS mutant; MSS

User avatar
O Stoma Mia
Posts: 1709
Joined: Sat Jun 22, 2013 6:29 am
Location: On vacation. Off-line for now.

Re: Need some new trial options/Running out of Time

Postby O Stoma Mia » Sat Dec 26, 2015 9:21 am

It looks like there are 6 locations in California that are running Xilonix trials right now...

Xilonix trials in California

Ceebo
Posts: 132
Joined: Sat Feb 14, 2015 9:15 am
Location: Southwest Michigan

Re: Need some new trial options/Running out of Time

Postby Ceebo » Mon Dec 28, 2015 10:01 am

O Stoma mia : Thanks for the trial sites in CA. --Cindie
DH 64 Stage 4 on 4/14 ; cecal tumor; 5+ nodes ; mets to liver; colon resection
5/14 FOLFOX
9/14 - Liver surgery aborted; peri mets
10/14 CT mult.1-2 mm lung mets; FOLFIRI & Avastin
1/15 CT -liver & lung mets shrinking
3/15 PET - ? New met. site colon; CEA rising
7/15 Chemo has failed; looking for clinical trial
9/29/15 started TAS-102 trial
KRAS mutant; MSS

Redwingfan3991
Posts: 25
Joined: Wed Jun 04, 2014 6:17 pm
Location: DTW

Re: Need some new trial options/Running out of Time

Postby Redwingfan3991 » Tue Dec 29, 2015 1:16 am

Ceebo,

My mom started this trial last Monday.
She is tolerating it well a bit tired but otherwise
No major issues.

Feel free to contact me, and if you want I can put you in
Touch with her.

Good luck to your husband

Michelle
Daughter/caregiver to mom aged 64
Kras mutant
4/14 diagnosed stage IV colon cancer mets to omentum
5/14 started folfox & avastin
10/14 chemo not working tumors growing
11/14 laparoscopic surgery to see how much seeding
12/14 unable to do surgery
1/15-8/15 folfiri
8/15- folfiri fail
10/15- Stivarga Stopped after 9 days due to side effects
10/15-- maybe clinical trial ? All conventional options seem to be exhausted
12/15--2/16 clinical trail failed
4/16 LONSURF

Ceebo
Posts: 132
Joined: Sat Feb 14, 2015 9:15 am
Location: Southwest Michigan

Re: Need some new trial options/Running out of Time

Postby Ceebo » Tue Dec 29, 2015 3:13 am

Your mom started the Xilonix trial? Where is your mom going for her trial treatment?? Looks like we are both from Michigan! --Cindie
DH 64 Stage 4 on 4/14 ; cecal tumor; 5+ nodes ; mets to liver; colon resection
5/14 FOLFOX
9/14 - Liver surgery aborted; peri mets
10/14 CT mult.1-2 mm lung mets; FOLFIRI & Avastin
1/15 CT -liver & lung mets shrinking
3/15 PET - ? New met. site colon; CEA rising
7/15 Chemo has failed; looking for clinical trial
9/29/15 started TAS-102 trial
KRAS mutant; MSS

Redwingfan3991
Posts: 25
Joined: Wed Jun 04, 2014 6:17 pm
Location: DTW

Re: Need some new trial options/Running out of Time

Postby Redwingfan3991 » Tue Dec 29, 2015 3:46 pm

My mom has not started the xilonix trial. She is on the one thru karmanos.
She has been on it for 1 week and is tolerating it well.
If you would like to speak with her about, I will put you in contact with her


Michelle
Daughter/caregiver to mom aged 64
Kras mutant
4/14 diagnosed stage IV colon cancer mets to omentum
5/14 started folfox & avastin
10/14 chemo not working tumors growing
11/14 laparoscopic surgery to see how much seeding
12/14 unable to do surgery
1/15-8/15 folfiri
8/15- folfiri fail
10/15- Stivarga Stopped after 9 days due to side effects
10/15-- maybe clinical trial ? All conventional options seem to be exhausted
12/15--2/16 clinical trail failed
4/16 LONSURF

bitchslapped
Posts: 1538
Joined: Tue Sep 09, 2014 3:23 pm
Location: PNW/USA

Re: Need some new trial options/Running out of Time

Postby bitchslapped » Sat Jan 02, 2016 5:51 pm

We also have a sticky thread @ the top of the forum that may be useful in services providing assistance in locating appropriate clinical trials:
viewtopic.php?f=1&t=53238

Hope everyone that is in clinical trials gives updates here on the forum.

Best Wishes
BS
DSS,35YO,unresect mCRC DX 7/'14,lvr,LN,peri,rib
FOLFOX+Avstn 4 Rnds d/c 10/'14
Stent 9/'14
FOLFIRI+Avstn 10/'14
Gone From My Sight 2/20/15
Me:garden variety polyps + precancerous polyp, diverticulitis
Carergver x2 DH,DM dbl occupancy,'03-'10
DH dx 47YO mCRC,'04-'07, lvr, billiary tree fried x HAI
DM dx CC 85YO,CC,CHF,stroke,dementia,aphasia

Dana123
Posts: 49
Joined: Tue Nov 24, 2015 9:31 pm

Re: Need some new trial options/Running out of Time

Postby Dana123 » Tue Jan 05, 2016 6:40 pm

Recommend you also join http://www.colontown.org and get access to their Blue Hope Clinic page on Facebook, designed to share info and experiences about clinical trials.

Also, Colon Cancer Alliance has a helpline that can assist with resources and advice. They also have a Clinical Trial Matching Service that helps people learn about trials that may be appropriate for their situation.
48 yo DH diagnosed/resection (rectosigmoid at 18 cm), 8/15
IIIB--T3, N2a (6/24), moderately differentiated, genetic testing--negative for mutations
CEA pre-surgery 3.5
FOLFOX began 8/15
Oxaliplatin dosage reduced at Round 8 due to WBC issue, began Neulasta for that
Oxaliplatin ended at Round 9 due to persistent neuropathy


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