Need help with decisions

[plastikos]

Hi again. Just an update. Immunotherapy (Pembro) has been put on hold temporarily. Liver mets causing biliary obstruction. Biliary stent is in and is working. My onc just feels he can get a more predictable response with chemo for now to shrink the liver tumors to a size that wont cause problems. Just received my first infusion of FOLFOX and Cetuximab last week. True enough my node at the right supraclavicular area has shrinked. Whether this is chemo or the residual effect of the Pembro dose I received in early December I am not sure. I'll take it though if it means response.

I am aware the being St IVb is very different from being St IVa. I am doctor and I know what the evidence is. But when you're the patient all evidence goes out the window. There have been survivors who have defied the odds to prove that.

My question is what is the best long term course of action?

1) My greatest fear is of dying. A close second is having to get chemo for life. So right now I am hoping chemo will buy some time and I will eventually get back on immuno. I know the data isn't there on how durable immuno respones are but the way I see it what have I got to lose. I already know that I recur when off chemo (although I have never tried Avastin). Anyway chemo is always there as a backup. Hoping also for a vaccine to prevent recurrence one day. Basically I am placing all my bets on immuno as my main treatment. Any thoughts?

2) Is it still worth it to pursue liver surgery in extrahepatic disease? I have nodal spread. Has anyone done this? I see survivors who had lung mets. If not surgery which would be better RFA or SIRT? I am always in awe of Suzanne Lindley's story on SIRT and that she has been a st IV survivor since 1998.

3)I have a paraaortic node met in the chest. Anyone have any effective treatment for this? SBRT?

Sorry I know this is a lot to chew on. Basically I am looking for opinions based on experience. I already know what the protocols and evidence are. And I have my doctors for that. I just dont want to be shackled or limited by what the current stats are. Hoping to find a center and doctors who are willing to take a risk and think out of the box. Any input would be greatly appreciated.

[stu]

Hi,
Are you quite chemo responsive?
Sounds like a good plan but given you have lymph node involvement I would lean to RFA for now but I would check with the liver surgeon to make sure it would not interfere with further ops if required. Also the larger liver resection knocked my mum for six compared to the smaller one. She was not well enough for chemo . You don't want anything holding you back.
Last year we were told my mum's lung met is part of her original spread. Possibly before2009 . She has not had chemo since 2010 . What on earth kept it in check. Immunotherapy sounds like a plan to me.
Here is the other question that keeps surfacing. Which might be good news for you. The liver tumours grew rapidly . The lung met was small and very slow growing . So where in 2009 chemo worked well at knocking it down it has no role to play in her lung met. Flexible treatment plans seems the way forward. Nor had it mutated!!
I think hitting it hard then back to immunotherapy seems a ideal solution. Reducing the tumour load has always made sense to me.
Kind regards
Stu

[Stanfordmom]

I bet if you go to Sloan and consult Dr. Kemeny, she might be able to come up with a compresphensive plan. Lung nodule might be RFAed, the para aura LN can be removed. They removed mine in the beginning but it turned not to be Cancer. Liver might benefit from HAI pump. If most of your spread is in the liver, you might be able to take you and have HAI implanted.

Seriously, she is that good. She fights hard for her patient. She strikes down Cancer once, twice, three time .....

Do think about her and sloan.....Good luck!

Sha

[plastikos]

Hi,
Are you quite chemo responsive?
Sounds like a good plan but given you have lymph node involvement I would lean to RFA for now but I would check with the liver surgeon to make sure it would not interfere with further ops if required. Also the larger liver resection knocked my mum for six compared to the smaller one. She was not well enough for chemo . You don't want anything holding you back.
Last year we were told my mum's lung met is part of her original spread. Possibly before2009 . She has not had chemo since 2010 . What on earth kept it in check. Immunotherapy sounds like a plan to me.
Here is the other question that keeps surfacing. Which might be good news for you. The liver tumours grew rapidly . The lung met was small and very slow growing . So where in 2009 chemo worked well at knocking it down it has no role to play in her lung met. Flexible treatment plans seems the way forward. Nor had it mutated!!
I think hitting it hard then back to immunotherapy seems a ideal solution. Reducing the tumour load has always made sense to me.
Kind regards
Stu

Hi Stu. Yes my onc seems to think I am chemo responsive. I never progressed ON chemo. Just looking for that "magic" combination that'll knock this thing out for good. Hoping immunotherapy is the game changer.

[plastikos]

I bet if you go to Sloan and consult Dr. Kemeny, she might be able to come up with a compresphensive plan. Lung nodule might be RFAed, the para aura LN can be removed. They removed mine in the beginning but it turned not to be Cancer. Liver might benefit from HAI pump. If most of your spread is in the liver, you might be able to take you and have HAI implanted.

Seriously, she is that good. She fights hard for her patient. She strikes down Cancer once, twice, three time .....

Do think about her and sloan.....Good luck!

Sha

Hi Sha. Thanks. I am planning to have consults in the US and MSK is my first option.

[rp1954]

... I am placing all my bets on immuno as my main treatment. Any thoughts?

Effective available immuno today is likely more complex than a single magic bullet like Sleen's, timing here is problematic
For options with less resolving power, I am wary of trials that try single components or binaries for small statistical gains. "cheaper by the dozen" with multiple targeting and titration makes more sense to me. Implicit in this, is that most components have a high therapeutic index.

Is it still worth it to pursue liver surgery in extrahepatic disease? I have nodal spread. Has anyone done this? ...
I have a paraaortic node met in the chest. Anyone have any effective treatment for this? SBRT?

We disintegrated or shrank some liver lesions when the combined immunochemo met several criteria. For surgery per se, it depends on how many days surgery would interrupt various chemistry components.

We reduced the nodal load surgically and inhibit or contain the rest by daily immunochemo. However, it is a fairly complex, by the (blood and other) numbers affair.
Imperfect delivery means things start to grow again in one or more markers, depending on what's short or missing. Returns to/toward baseline(s) are possible but not easy or always guaranteed.

[Lee]

Sorry, I can not offer advice, butt know you are never far from my thoughts and prayers. I always read your posts.

I hope you can make it to the USA soon and to Sloan Kittering in NYC for consults. I hope they have the answers that you seek to get you to NEDville.

All the best, (((plastikos)))

Lee

[plastikos]

Update on myself. Just had my 2nd chemo last Monday (just 5FU and Cetuximab). Prior to my 2nd chemo my hepatologist happened to do an ultrasound which showed almost a 50% decrease in the size on my liver tumors. I also noticed a significant decrease in the size of my supraclavicular node. Whether this is due to the Pembro dose I received in early December or the 1st chemo (Jan 10) or a combination of both I am not sure. I am more inclined to think it's the Pembro but onc thinks it's the chemo as he feels I have always been chemosensitive. Understandably he is biased in favor of chemo as he has had tons more experience with it as compared to immuno, which I suspect is the case with most practicing oncs. He held off on adding Oxaliplatin to the mix as he sees no benefit in adding a toxic drug when I seem to be responding. It seems too fast for me to be the chemo. Or maybe I am just itching to give Pembro another try. I am sick of chemo.

Questions: should I still pursue some sort of ablative therapy (RFA, SIRT) once liver tumors are smaller? This was my jnitial plan. Or should I just wait until chemo and/or immuno wipe them all out. This seems to be my onc's plan.

Has anyone had experience suddenly shifting to immuno from chemo? How soon can I shift assuming I am seeing a response? I understand that there aren't many "standard" protocols at this stage.

[Marejenny]

Hi Plastikos,

Could you tell me the difference between Stage 4A and 4B colon cancer? I have been searching all over and just noticed your reference to it. Looks like you have been fighting quite the battle for a few years.and I wish you the best of luck in the future.

Thanks,
Mary

[Lee]

Questions: should I still pursue some sort of ablative therapy (RFA, SIRT) once liver tumors are smaller? This was my jnitial plan. Or should I just wait until chemo and/or immuno wipe them all out. This seems to be my onc's plan.

Congratulations on your shrinkage.

My understand, surgery give you the best outcome. If at all possible, get 2nd opinions, especially at a major cancer treatment centers.

All the best,

Lee

[plastikos]

Hi Plastikos,

Could you tell me the difference between Stage 4A and 4B colon cancer? I have been searching all over and just noticed your reference to it. Looks like you have been fighting quite the battle for a few years.and I wish you the best of luck in the future.

Thanks,
Mary

Hi Mary. Sorry the site was down for a while. IVa as far as I know is when disease has spread to other organs but is limited to one other organ (liver) and is resectable. IVb is where you cannot achieve total surgical resection of all macroscopic disease.

[plastikos]

Questions: should I still pursue some sort of ablative therapy (RFA, SIRT) once liver tumors are smaller? This was my jnitial plan. Or should I just wait until chemo and/or immuno wipe them all out. This seems to be my onc's plan.

Congratulations on your shrinkage.

My understand, surgery give you the best outcome. If at all possible, get 2nd opinions, especially at a major cancer treatment centers.

All the best,

Lee

Thanks Lee. I forgot to mention that I have some nodal spread which makes things a little more complicated decision wise.

[Wonderfullymade]

Hi Plasitkos,
You and I are on a similar ride here. Looks like our DNA is even the same ( kras wild, msi-h) I don't have an answer for you as far as best treatment goes, but wanted to let you know you are in my prayers!
I am going for a scan next week to see if the "progression" on the last scan is really progression or just inflammation from the colitis...
I might be switching...well I am trying not to put the cart before the horse...so
I will keep you informed...
Wonderfullymade

[dianetavegia]

Marejenny,
Stage IVa is spread to one organ.

There is a sub set of IVa which is considered more likely curable. It's called oligometastatic disease and is when the cancer met was found more than 2 years post original dx. That's called metrochronus. Also, there is usually only one tumor and it is smaller than 3 cm. Only spread to one distant site, so not lung and liver. A good percentage of Stage IVa patients (20% to 50%) who have oligometastatic disease confined to a single organ—usually the liver—complete metastasectomy can result in cure.

In colorectal cancer, there is growing evidence that liver-limited disease is a distinct biological cohort that may benefit from aggressive management. While only a minority of patients are technically resectable, approximately 40% of patients with resected liver limited disease are alive 5 years after diagnosis.

[Marejenny]

Thank you Diane.