Dad's Update: PVE and second opinion

npatel22526

 

Hello All,

 

 

 

Hope all are doing well and healthy.  It's been a while since my last post so wanted to keep everyone posted and especially share an experience.

 

I've updated AboutMe page with history for detailed information but briefly, dad have colon cancer metastasized to liver (July 2019) . So far two surgeries were performed, first was colon resection (Aug 2019) , followed by partial liver resection (Jan 2020) and 12 cycles of FOLFOX (Sep-2019 to April 2020) .  Then After few months of break  (April 2020 to August 2020) the mets reappeared, with multiple lesions , mostly on right side along with abscess that had Klebsiella infection. After the infection was taken care, the plan was to start FOLFIRI + Avastin (Dec 2020)  and Perform Extended right hepatectomy.  Avastin caused Nose to bleed so was stopped (02/2021), currently, dad is only on irinotecan, which seems to be working as his CEA was dropped from ~70 to ~22.

 

So now, we had Portal Vein Embolization (PVE) (April 2021), so that dad can have enough liver to support the body post-surgery. 5 weeks after the PVT, a CT scan was performed (May 2021)  and according to the current surgeon, the PVE procedure didn't increase the volume of the Left side of the liver.

 

The oncologist reviewed the scans with the surgeon and said Dad is no longer a surgery candidate and surgery is off the table. We also met with the Surgeon  (Thanks to this forum, one thing I tattooed in my head is "not to take surgery advice from Oncologist and Chemo advice from Surgeon) who echoed the same regarding the PVE but said as a second option we can do a partial resection of the right side and burn the remaining of the lesions with radiation ( So surgery was still an option)

 

Meanwhile, I started researching alternative as well Salvage techniques for "failed"  PVE. Also looked into clinical trials, and came across one for liver transplant patients who had liver mets from Colon cancer and no tumors elsewhere in the body.  There was a Phase-I trial done in Oslo which showed amazing results. 

 

This trial may be suitable for fellow members on east costs. -> https://clinicaltrials.gov/ct2/show/NCT04742621

 

Apparently, the trial started in February 2021,  So I contacted the Surgeon of the Clinical trial and amazingly got his response within few hours. The same day his team set up an online portal for me to provide all the scans and reports, even though their facilities in NYC do not accept  out NJ Medicaid.   Within 4 days They reviewed all the scans, discussed with the tumor board and he personally, called me back and said he can do the surgery and dad doesn't even need to go through the clinical trial. His staff scheduled in-person visit and we meet him within a week. He was certain that surgery is still the best option and he can take care of all the right side lesions. Also assured that his team is working with insurance. Currently, we waiting for an MRI (for which his office got approval from insurance in less than a day, normally it takes weeks). I am not going too ahead of myself , keeping fingers crossed and hoping nothing drastically changes in the latest MRI and if that's the case then surgery shall be scheduled in a month.

 

Take home is to hanging there, and keep trying you never know which door will open for you. And to always get the second/third opinion. No matter what the MRI results will be, the doctor and his team left a lifetime mark in my heart, which I am very grateful of.

 

Cheers,

Nihir

Tueffel

Confused

Hello,

It seems that you found some options. But I am a little confused: your dad will have the liver resection right? Not a liver transplantation? As for liver transplantion, there is on colon talk a thread about it. Tbh I am not a hge fan about transplantation in these cases. I would give a liver to my dad without a problem,many friends would. The problem is that after the transplant you need drugs that suppress the immune system and I recently learned that this just causes rapid growth of the tumor when it comes back. So keep that in mind if you do the trial. 

Second opinion is so important. I am thankful that my dads doctors dont mind sharing things, they are working with different colon cancer centers together to help my Papa. And you are right: at some poibt there will be something.

Tueffel

npatel22526

Tueffel said:

Confused

Hello,

It seems that you found some options. But I am a little confused: your dad will have the liver resection right? Not a liver transplantation? As for liver transplantion, there is on colon talk a thread about it. Tbh I am not a hge fan about transplantation in these cases. I would give a liver to my dad without a problem,many friends would. The problem is that after the transplant you need drugs that suppress the immune system and I recently learned that this just causes rapid growth of the tumor when it comes back. So keep that in mind if you do the trial. 

Second opinion is so important. I am thankful that my dads doctors dont mind sharing things, they are working with different colon cancer centers together to help my Papa. And you are right: at some poibt there will be something.

Tueffel

Too much information

Thank you for your reply.
I think I provided too much information.  Yes, the first plan is to go for surgery unless MRI shows that spread is bad on the left side. Let me clear some air,

So after the PVE procedure, the consensus was that the planned surgery which would have removed all(most) the liver with lesions, is no longer be possible. That would mean lifetime chemotherapy. With the number of lesions he has, We weren't keen to accept the option. He gets terrible mouth sores from almost all the chemotherapy drugs, so bad that he can't even eat some days. So started researching all available options and came across the liver transplant trial. I studied the trial and dad's seems eligible so I decided to enroll him in the trial as well as fully planned to become his liver.  Thus I reach out to the Trial surgeon/team, However,  when he reviewed all previous scans he was convinced that dad is very well suitable for surgery and doesn't need a transplant as of now so we plan to pursue surgery (and not the transplant)  with the clinical trial surgeon.

 

Now regarding your concerns related to Transplant, please review this https://pubmed.ncbi.nlm.nih.gov/31188200/

"after the transplant you need drugs that suppress the immune system and I recently learned that this just causes rapid growth of the tumor when it comes back"

That is why the trial's primary requirement was that the tumor MUST only be present in the liver and nowhere else, with certain CEA requirements. The hope is that replacing the liver would "likely" get rid of the disease. If you read the Oslo trial, I believe none had any recurrence in the liver. Few had "non-aggressive" recurrence in other organs, mostly in lungs which were candidates for surgeries.

I know there are risks associated with Transplant but lifetime chemo was not an encouraging option for my dad.

Hope this clarifies.

I am glad that you have a caring team working for your dad.

 

SnapDragon2

Best news I've heard all day.

Best news I've heard all day...Way to advocate!!!

Don't take onc advice from surgeon and don't take surgical advice from onc...

If you don't know your options available, you have no options!

DanNH

Thank-You for this post

This really rang true to me. I hope that we will be able to do a liver resection some day. I will definately reach out to an oncological surgeon for a second opinion before taking NO for an answer...Thank you!

Dan

Tueffel

npatel22526 said:

Too much information

Thank you for your reply.
I think I provided too much information.  Yes, the first plan is to go for surgery unless MRI shows that spread is bad on the left side. Let me clear some air,

So after the PVE procedure, the consensus was that the planned surgery which would have removed all(most) the liver with lesions, is no longer be possible. That would mean lifetime chemotherapy. With the number of lesions he has, We weren't keen to accept the option. He gets terrible mouth sores from almost all the chemotherapy drugs, so bad that he can't even eat some days. So started researching all available options and came across the liver transplant trial. I studied the trial and dad's seems eligible so I decided to enroll him in the trial as well as fully planned to become his liver.  Thus I reach out to the Trial surgeon/team, However,  when he reviewed all previous scans he was convinced that dad is very well suitable for surgery and doesn't need a transplant as of now so we plan to pursue surgery (and not the transplant)  with the clinical trial surgeon.

 

Now regarding your concerns related to Transplant, please review this https://pubmed.ncbi.nlm.nih.gov/31188200/

"after the transplant you need drugs that suppress the immune system and I recently learned that this just causes rapid growth of the tumor when it comes back"

That is why the trial's primary requirement was that the tumor MUST only be present in the liver and nowhere else, with certain CEA requirements. The hope is that replacing the liver would "likely" get rid of the disease. If you read the Oslo trial, I believe none had any recurrence in the liver. Few had "non-aggressive" recurrence in other organs, mostly in lungs which were candidates for surgeries.

I know there are risks associated with Transplant but lifetime chemo was not an encouraging option for my dad.

Hope this clarifies.

I am glad that you have a caring team working for your dad.

 

Seems to work

Seems to work on slower growing colon cancers and not like fast growing as my dads. I did read the pubmed article and the Fong score is too high now. Funny thing, it could have worked last year...  But even if my dad has lifetime chemo, he does feel good. One week he is tired and I hope it stays that way. I can still hope for a complete response 

Thanks for the clarification! You did not write too much. I just lost track at one point.. 

Unfortunately the study did not state what drugs need to be taken after. Even if the disease is confined only to the liver, the patient still needs to take drugs and that increases the risk for new cancers or faster growing ones...

EDIT: but Oslo is close to Germany. Maybe when the disease is several months stable, Papa might meet inclusion criteria and they would do a transplant. Enough people in our family and many friends would be willing to help. So Thanks I will keep it in mind