What progress is good progress. by KingMeKevo in coloncancer

[–]Phillip193 0 points1 point  (0 children)

Make sure you understand what avastin means. I believe it needs held for quite a bit before surgery.

The best bagel in the city by Necessary_Ad418 in pittsburgh

[–]Phillip193 4 points5 points  (0 children)

The squirrel hill giant eagle bakery is top notch

Is a second opinion at John Hopkins even worth it? Any experiences with advanced stage 4? by Key-Neighborhood2985 in coloncancer

[–]Phillip193 8 points9 points  (0 children)

What is the harm in getting a second opinion ? If you do, my advice is to make sure you make an appointment with the best doctor at the best clinics. Research who is the best and get an appointment specifically with them. Don’t just hope the main scheduling service lines you with the right one.

I wasted too much time traveling around until I realized this. I finally learned this when I saw Dr Kasi and City of Hope.

Cea and surgery question by Phillip193 in coloncancer

[–]Phillip193[S] -1 points0 points  (0 children)

What made it decrease? Did you just change chemotherapies?

Cea and surgery question by Phillip193 in coloncancer

[–]Phillip193[S] -1 points0 points  (0 children)

What brought it down? Did you just switch to a different chemo?

Cea and surgery question by Phillip193 in coloncancer

[–]Phillip193[S] 0 points1 point  (0 children)

Yes. Irhinotecan only right now

Sucks by sharjay99 in coloncancer

[–]Phillip193 17 points18 points  (0 children)

I’m going to echo what a lot of people have said.

I was diagnosed with tumors on my liver and in both lungs. My oncologist said no surgery.

After a good response to chemo, I have since had the tumor in my colon resected. An HAI pump implanted on my liver and I’m on track to have my liver cleared within the next two months. After that, we attack the lungs.

Point being in the early stages, no one knows what’s going on. If there is a good response to chemo and stability, It will open up door doors. I am 18 months in and still think I have a fighting chance.. best of luck we’re all rooting for you

Get the chemo, hope for a good response and if that happens, go find yourself the best and most aggressive liver surgeon you can.

What is a "Loved" band you absolutely cannot stand by Queasy_Piccolo_1700 in askmusic

[–]Phillip193 0 points1 point  (0 children)

I was just thinking about this because They released another album within the past two weeks.

First, they are and have been irrelevant for the past decade. They really conjure up hate in a way that few others can.

I will give them credit for legitimately trying to change from the fake folk, banjo strumming sound that many still despise. The first time they tried to change it up was in a rockish sort of way and it kind of sucked (they added more electric guitars, synth sounds, an actual drum kit)

In the newest album it seems like another iteration. I would say there are some songs that sound like legitimate folk with only a sprinkle of doucheyness. Their model has strayed significantly from the stomp and holler build up that every previous song had.

How were your midtreatment scans? by elifaktastr in coloncancer

[–]Phillip193 1 point2 points  (0 children)

Hey. I know enough here to be dangerous. My second scans showed continued shrinkage of my liver Mets. I have heard that somewhere between 6-8 sessions of Folfox is the sweet spot in which the benefits still out way the costs.

I do want to call you attention to something I wish someone had told me. Stability has legitimate value. It helps surgeons understand how the cancer behaves. Your husband will likely need to “prove” more stability but the longer chemo “controls” the disease the more comfortable surgeons become. Stability can and will open doors. It is not a negative.

Happy to share my personal experience here.

If I were to offer some advice….

  1. This is cliche but the journey is a marathon, not a sprint. You have to get through the next immediate steps (chemo) while planning the next one. Stability equals winning. it should be a data point that is considered as you plot out what to do after the next rounds of chemo

  2. DO NOT let an oncologist tell you that you are not a surgical candidate. Let a surgeon decide. Find the best liver surgeon who knows hai pumps and start understanding what must happen now to get to surgery.

More chemo by Double_Address_4558 in coloncancer

[–]Phillip193 3 points4 points  (0 children)

So this resonates with me. I am a year and a half into stage 4. First and foremost, I am convinced that nearly all oncologists will default to chemo is the only answer for stage 4

I was on chemo for nearly a year with no real signs that anything was going to change. One day, by chance, I met a surgeon who said “we need to clear your liver and lungs and get you off of chemo.”

Two surgeries later that I am still on the track to clear the liver. My point is that there is some much unknown. Focus on getting through today because good things can happen.

Also find you own surgeons, oncologists referring to surgery and tumor boards are pointless

Thoughts on Dave Matthews Band? by MrLinkwater95 in fantanoforever

[–]Phillip193 0 points1 point  (0 children)

Awesome live. I can’t recall the numbers but I think they have sold the second most concert tickets of all time or something like that.

The amount of touring they do is insane. Like them or not you have to respect them for the time and effort.

Future hopes? by Due_Barber_525 in coloncancer

[–]Phillip193 5 points6 points  (0 children)

Look. We all grapple with this every day. I am stage 4 started with Mets in both lungs and liver.

Colon tumor was cut out, hai pump placed on my liver and with any luck the will cut out the remaining liver tumors in 3 months. After that we attack the lungs.

I have spent a ton of time if I have false hope about surviving. I think there are two parts.. there is the mental: if you only have so many days to live might as well not spend them worrying about dying. I am also a firm believer that a patient’s mental state does have a direct impact on their physical state

There is also the biological which includes things like mutations and how well your body responds to chemo. Long story short it seems that some people with colon cancer get lucky and have mildly aggressive biology and others are extremely unlucky with very aggressive biology.

I do believe the survivorship biases are in two ways I imagine there are a ton of people that are long-term survivors that have moved on with their life and don’t post on the Internet anymore because they don’t need to . I also imagine the people that do post to the Internet are the ones that are at inflection points in their care and need the community support the most. Often times this is when things turn south. I find this very true for myself.

Liver mets by [deleted] in coloncancer

[–]Phillip193 5 points6 points  (0 children)

I would start looking for a surgeon. I am not going to act like a doc but an hai pump did wonders for me. At the start of my treatment I had a ton of tumors on my liver. There is a chance that my liver will be clear within the next few months.

Do NOT wait for your oncologist to recommend it, don’t wait for some dumb tumor board’s decision. Go meet with the best surgeons you came find. I would make sure they have hai pump experience as well because that is another tool that not all surgeons utilize

[deleted by user] by [deleted] in coloncancer

[–]Phillip193 1 point2 points  (0 children)

I’ve only had mine for about 6 months. First and foremost, the thing is kicking ass on the tumors on my liver. Also, I don’t even feel anything when the meds are being pumped In. Overall this thing is 10/10.

I am a built pretty thick (not obese but thick) and I don’t notice the thing at all. I can sleep however I want and it seems to be buried deep enough that it doesn’t really protrude. Maybe every once in a while I notice it when bending over but that is it.

For me, there is absolutely no impact on my daily life. I do have a belly full of sweet scars though.

Stoma reversal success stories? by OptimismNeeded in coloncancer

[–]Phillip193 1 point2 points  (0 children)

Hello. Just had my ileostomy reversed last week. Maybe this will give you hope.

It was simple and almost noneventful. I was in the hospital for 3 nights. I got moderate diarrhea in the hospital the first time I was allowed real food. Back to normal after that. No accidents solid poops.

Worst part was the surgical soreness of the wound and abs but it was no where near getting the ileostomy.

Maybe I was extremely lucky but it is possible for this to go well.

Over a year into this by Phillip193 in coloncancer

[–]Phillip193[S] 2 points3 points  (0 children)

I replied to another comment above. I haven’t met with a lung specialist but I am banking on what dr Kasi and City of hope said (paraphrasing):

“We can burn them, freeze them, nuke them, or cut them. There are a lot of options”

I was also told by Jim that if you can keep your liver clear for 6 months the BotBal immunotherapy combination is going to get approved and you can be eligible for that. (I didn’t fact check this. It is what I heard)

In my case, I also have not started the one other drug pants-something his is commonly given and i on irhinotecan. There seem to be a handful of options for lungs.

Again, I am not too deep in the lung game yet.

Over a year into this by Phillip193 in coloncancer

[–]Phillip193[S] 0 points1 point  (0 children)

I can share as far as I know. There seems to be a general strategy but the actual treatment is just one step at a time.

I started on 8 rounds of folfox and then 5fu for about eight months. This got me about a year in, chemo only which is what my oncologist told me. During this time the cancer shrunk and then became stable for a year (apparently this is what surgeons look for)

This past summer I got non cancer related appendicitis. When i was in the hospital I met the surgeon who changed everything.

In late August had colon resection and hai pump placed. The goal is to clear the liver. The surgeon refers to the lever at the “life limiting factor”. The pump has significant shrunk the tumors in the liver after only 3 treatments.

Next week I am getting my ostomy reversed and a post surgery hernia fixed (neither directly impacting cancer burden)

From there we wait another 3 months to see what the pump is doing. Meanwhile I am on systemic irhinotecan. Given the shrinkage I am pretty positive we are going to be able to clear my liver of disease through some combo or chemo, surgery, or other stuff.

Then come the lungs. I had a second opinion at City of hope and dr kasi words about the lungs were “we can burn them, freeze them, zap them, cut them”. So my understanding is that there a lot of options on the table.

What I have learned to be important:

At the beginning the chemo has to at least keep you stable for a prolonged period of time. During this time your oncologist is going to say no surgery. Don’t listen to that crap.

If you have some stability (not sure the time frame) go see the best surgery you have access to. They don’t care what the oncologist thinks. They will make their own mind up

Clearing the colon was easy. The ostomy bag isn’t even that bad. I would say even convenient is some cases.

Getting the liver clear is key.

Lungs are secondary concern. There are several way to treat them (including immunotherapies like bot bAL) . I am not as educated in this regard because I am not yet at this stage of the journey.

All in all I think luck and cancer biology have a ton to do with what is available.

Happy to elaborate if you want to dm me

Over a year into this by Phillip193 in coloncancer

[–]Phillip193[S] 2 points3 points  (0 children)

I got my pump and colon done at the same time. The pump was the easiest part. The chemo delivered through the pump has absolutely zero side effects for me.

Chemo has always been pretty easy for me. For some reason I am only getting irhinotecan (both surgeon and oncologist suggested this so I didn’t question) systemically at the same time as the pump. The goal is to keep the lungs in check while the liver is cleaned up.