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...progression...

Posted: Fri Jul 19, 2019 12:29 pm
by Mohrfamily
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"

Re: ...progression...

Posted: Sat Jul 20, 2019 3:15 am
by Pyro
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.

Re: ...progression...

Posted: Sat Jul 20, 2019 8:16 am
by Mohrfamily
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

Re: ...progression...

Posted: Sat Jul 20, 2019 10:23 am
by FightCRC
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.

Re: ...progression...

Posted: Mon Jul 22, 2019 5:33 pm
by juliej
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

Re: ...progression...

Posted: Mon Aug 05, 2019 4:45 am
by Mohrfamily
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.

Re: ...progression...

Posted: Thu Aug 08, 2019 4:48 am
by Mohrfamily
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?

Re: ...progression...

Posted: Fri Aug 16, 2019 2:43 pm
by Mohrfamily
So news flash! Husbands MRI came back with SMALLER spots!

Re: ...progression...

Posted: Fri Aug 16, 2019 2:47 pm
by sbpaq1
Heck yeah!

Re: ...progression...

Posted: Fri Aug 16, 2019 3:12 pm
by ginabeewell
That's amazing news - congratulations! I guess that CEA was an accurate leading indicator after all!!

Re: ...progression...

Posted: Fri Aug 16, 2019 9:29 pm
by Gravelyguy
That is awesome news. Now get those things out!

Dave

Re: ...progression...

Posted: Sat Aug 17, 2019 9:07 am
by Mohrfamily
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!

Re: ...progression...

Posted: Fri Aug 23, 2019 4:45 am
by Mohrfamily
If anyone wondered. The largest spots on DHs liver are now under 2 cm!!

Re: ...progression...

Posted: Fri Aug 23, 2019 7:50 am
by Rock_Robster
Mohrfamily wrote:If anyone wondered. The largest spots on DHs liver are now under 2 cm!!

That’s fantastic! You’re even borderline ablation territory there...

Re: ...progression...

Posted: Fri Aug 23, 2019 10:20 am
by radnyc
HAI