...progression...

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Mohrfamily
Posts: 137
Joined: Tue May 22, 2018 4:04 pm

...progression...

Postby Mohrfamily » Fri Jul 19, 2019 12:29 pm

The first bad scan in the last 15 months. More pronounced spots that the radiologist defined as a likely progression some areas comparing to a scan in March do not even register anymore and others are super bright.

There was talk of a change in systemic, the radiologist met with our oncologist to determine together a chemo change is in order most likely to add irinotecan. The radiologist and oncologist agreed together to get in a referral for an oncology doctor specializing in clinical trials as well as a professional in administering SIRTS. The radiologist said 2 options speakk volumes altering systemic and the SIRTS

"we are not done and certainly not out of viable options"
DH dx officially stage IV with liver mets largest measuring 6x6.4 cm
Colonoscopy/endoscopy/port place 5/29
4cm long mass in splenic flexure
1st round FolFox 5/30
08/2018 new CT no new lesions, clear lungs, slight decrease in colon.
3/2019 PET scan shows greater than 6-7 liver mets largest measuring 3x3 cm. No growth nothing new.
4/3/19 consult radiologist for possible radiation treatment.

Pyro
Posts: 274
Joined: Mon Oct 12, 2015 7:40 pm
Location: Tucson, AZ

Re: ...progression...

Postby Pyro » Sat Jul 20, 2019 3:15 am

Mohrfamily wrote:The first bad scan in the last 15 months. More pronounced spots that the radiologist defined as a likely progression some areas comparing to a scan in March do not even register anymore and others are super bright.

There was talk of a change in systemic, the radiologist met with our oncologist to determine together a chemo change is in order most likely to add irinotecan. The radiologist and oncologist agreed together to get in a referral for an oncology doctor specializing in clinical trials as well as a professional in administering SIRTS. The radiologist said 2 options speakk volumes altering systemic and the SIRTS

"we are not done and certainly not out of viable options"


Heck no you’re not out of options, in fact, it looks like you hade some standard options left before trials which is a good feeling. I am curious what trials might be available, could you post those once you find out? I have had a ton of success with irrotecan, years of it, and imagine you guys would too.
Aug 2015- Diag Stage 4 CC with liver Mets(38/m)
Sep 2015- Avastin/Folfox/Iron
Dec 2015-Not liver surgery candidate
Jan 2016- Erbitux/Folfiri, 2nd opinion at MDA in TX
Feb 2016 -MDA liver surgery
Mar 2016 -30% of left lobe rem, PVE
May 2016 - 70% of liver rem
Jun 2016-Rad
Jan 2017-perm colost @MDA
Jul 2017-Erb/FOLFURI
Nov 2017 -Lung & Liver ablations@MDA
Jan 2018 -Xeloda & Avastin mx
Jul 2018-Avast/FOLFURI
Sep 2018-Rad
Mar 2019 - Keytruda fail, CEA @36
Jun 2019 - FOLFURI until I can’t stand it

Mohrfamily
Posts: 137
Joined: Tue May 22, 2018 4:04 pm

Re: ...progression...

Postby Mohrfamily » Sat Jul 20, 2019 8:16 am

Thank you pyro. The radiologist reccomended this doctor highly who specializes in clinical trials. For sure I will be on here with those details as they emerge for a round of q&a
DH dx officially stage IV with liver mets largest measuring 6x6.4 cm
Colonoscopy/endoscopy/port place 5/29
4cm long mass in splenic flexure
1st round FolFox 5/30
08/2018 new CT no new lesions, clear lungs, slight decrease in colon.
3/2019 PET scan shows greater than 6-7 liver mets largest measuring 3x3 cm. No growth nothing new.
4/3/19 consult radiologist for possible radiation treatment.

FightCRC
Posts: 37
Joined: Fri May 25, 2018 10:39 pm

Re: ...progression...

Postby FightCRC » Sat Jul 20, 2019 10:23 am

I have seen many, many cases in the various CRC groups of patients who consult for the HAI pump, get approved for the procedure, and then back out for various reasons. Nerves and logistics being the most common. You can see them look for all the reasons not to do the treatment, than accept the reasons why they should.

There is also the mistaken belief that HAI is an option that can be kept in the back pocket, and pulled out when needed. Like a "get out of jail free" card.

Unfortunately, it doesn't work that way. There is a window. Wait too long, and the window closes. Many of those patients try later to get HAI, when they become desperate, but it's too late.

I don't say any of this to upset or scare you. But needs to be said. Time is not a Stage IV patient's friend. Neither is indecision. HAI might not be the best or correct treatment for your husband's current situation, but he needs to take it off the back burner, and move it to the front one now. Good luck to you guys.

User avatar
juliej
Posts: 3015
Joined: Thu Aug 05, 2010 12:59 pm

Re: ...progression...

Postby juliej » Mon Jul 22, 2019 5:33 pm

FightCRC wrote:Time is not a Stage IV patient's friend. Neither is indecision. HAI might not be the best or correct treatment for your husband's current situation, but he needs to take it off the back burner, and move it to the front one now. Good luck to you guys.

Agree x 1,000! :D

HAI is a life saver. It should be front and center in your arsenal of possible directions to go. It was, by far, the easiest chemo I took during my treatment.

Juliej
Stage IV, liver/lung mets 8/4/2010
Xelox+Avastin 8/18/10 to 10/21/11
LAR, liver resec, HAI pump 11/11
Double lung surgery + ileo reversal 2/12
Adjuvant Xeloda 3-9/12
VATS rt. lung 12/21/12 - benign granuloma!
NED 3/17/12 to 6/13/2019, CEA<1

Mohrfamily
Posts: 137
Joined: Tue May 22, 2018 4:04 pm

Re: ...progression...

Postby Mohrfamily » Mon Aug 05, 2019 4:45 am

So Dr. Pnemonitis is ordering tests in DHs biopsies from last year for the HER2. He might qualify for 2 trials if it tests out ok. We talk to an IR doctor the 12th and hoping to go down to Columbus soon.

My hubby has been getting pats on the back from the new people he's been seeing. He's been so focused on doing everything at all times to survive I.e. not giving himself a break on vectibix except for 2 cycles, not back to back, he's covered in rash and this week hit a breaking point in the pain. His legs hurt so bad he couldnt let our daughter sit on his lap. She's 5 and can't sit still he can't let this rash keep his "lap empty". A game they play when they want cuddles.
DH dx officially stage IV with liver mets largest measuring 6x6.4 cm
Colonoscopy/endoscopy/port place 5/29
4cm long mass in splenic flexure
1st round FolFox 5/30
08/2018 new CT no new lesions, clear lungs, slight decrease in colon.
3/2019 PET scan shows greater than 6-7 liver mets largest measuring 3x3 cm. No growth nothing new.
4/3/19 consult radiologist for possible radiation treatment.

Mohrfamily
Posts: 137
Joined: Tue May 22, 2018 4:04 pm

Re: ...progression...

Postby Mohrfamily » Thu Aug 08, 2019 4:48 am

Apparently the tune is changing on my husband's condition and in a positive way ((not to get my hopes up)).

Chemo was delayed this week because the oncologist wants an MRI before going forward with irinotecan which can't be done till the 15th. So where DH was looking fir a break from vectibix he got a bigger break than he wanted. However he still went in for his routine bloodwork at his insistence to check his CEA and its down to 47! Last time it was I believe 62! Albeit short lived win since he skips this week that number will probably rise again :roll:.

That opened a discussion on how no one believes the PET scan could show progression in the liver when everything else shows the contrary, hence the MRI? This is good right?
DH dx officially stage IV with liver mets largest measuring 6x6.4 cm
Colonoscopy/endoscopy/port place 5/29
4cm long mass in splenic flexure
1st round FolFox 5/30
08/2018 new CT no new lesions, clear lungs, slight decrease in colon.
3/2019 PET scan shows greater than 6-7 liver mets largest measuring 3x3 cm. No growth nothing new.
4/3/19 consult radiologist for possible radiation treatment.

Mohrfamily
Posts: 137
Joined: Tue May 22, 2018 4:04 pm

Re: ...progression...

Postby Mohrfamily » Fri Aug 16, 2019 2:43 pm

So news flash! Husbands MRI came back with SMALLER spots!
DH dx officially stage IV with liver mets largest measuring 6x6.4 cm
Colonoscopy/endoscopy/port place 5/29
4cm long mass in splenic flexure
1st round FolFox 5/30
08/2018 new CT no new lesions, clear lungs, slight decrease in colon.
3/2019 PET scan shows greater than 6-7 liver mets largest measuring 3x3 cm. No growth nothing new.
4/3/19 consult radiologist for possible radiation treatment.

sbpaq1
Posts: 9
Joined: Sat Aug 25, 2018 8:09 pm
Facebook Username: Matthew

Re: ...progression...

Postby sbpaq1 » Fri Aug 16, 2019 2:47 pm

Heck yeah!
Age 30, Male
07/05/18 - Colonoscopy, T3N2M0/Stage IIIB Rectal, MSS and High Grade
09/10/18 - 28 Days Xeloda/Radiation
10/11/18 - MRI decrease in Tumor & Nodes
11/19/18 - lAR
12/06/18 - Bad news, Surgery margins inconclusive, 17 of 19 nodes, PNI & LVI
12/09/18 - Bad news, 2 spots on liver and 1 on Lung, XELOX start
02/15/19 - Good News! Lung spot gone, Liver Spot down to 1, Nodes shrinking.
06/15/19 - bad news! Rectal recurrence and node increase
07/01/19 - folfiri
08/23/19 - surgery consult unc

User avatar
ginabeewell
Posts: 269
Joined: Wed Oct 24, 2018 10:30 am

Re: ...progression...

Postby ginabeewell » Fri Aug 16, 2019 3:12 pm

That's amazing news - congratulations! I guess that CEA was an accurate leading indicator after all!!
45 year old mom of twins (7) and lucky stepmom of 13 and 16 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets (largest 11 cm)
9/20/18 CEA 931
10/1/18 FOLFOX + Vectibix planned 12 rounds
12/12/18 Routine scan showed typhlitis (7 days in hospital) but largest met down to 5 cm. Chemo holiday.
12/26/18 CEA 4.6
1/14/18 Resume chemo (#6-8)
3/27/19 Surgery: HAI pump placement / colon resection
4/8/19 Resume chemo (#9-12) FOLFOX (no OX) + Vectibix
5/20/19 CEA 1.3
7/19/18: 1st of 2 liver resections

Gravelyguy
Posts: 177
Joined: Thu Jul 05, 2018 6:03 pm

Re: ...progression...

Postby Gravelyguy » Fri Aug 16, 2019 9:29 pm

That is awesome news. Now get those things out!

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

Mohrfamily
Posts: 137
Joined: Tue May 22, 2018 4:04 pm

Re: ...progression...

Postby Mohrfamily » Sat Aug 17, 2019 9:07 am

Hope is alive and well! Our nurses at the cancer center were so excited for us they called the very next day! They could have waited till this upcoming Friday for the oncologist to follow up with us but good news in this game is to few and far between! I don't have any new measurements that will probably be given at that appointment. The nurses called not only to tell the good news but they also were on the phone with the insurance and squared them all up that nothing NEEDS changed and was given the go to resume!

Thank you all for visiting and your ....everything. Kindness, encouragement.... Just everything!
DH dx officially stage IV with liver mets largest measuring 6x6.4 cm
Colonoscopy/endoscopy/port place 5/29
4cm long mass in splenic flexure
1st round FolFox 5/30
08/2018 new CT no new lesions, clear lungs, slight decrease in colon.
3/2019 PET scan shows greater than 6-7 liver mets largest measuring 3x3 cm. No growth nothing new.
4/3/19 consult radiologist for possible radiation treatment.


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