The Colon Club

boxhill wrote:Keeping my fingers crossed for you. Any idea why this happened?

Sounds like this is an “expected response” when you are displacing such a large chunk of an organ - fluid comes in to fill the void.

But in my case, I had pain and a fever which suggested the fluid may have been infected. In fact, we still don’t know whether or not that’s the case and maybe won’t for another day or so!

I find myself wondering if they discharged me too early? Or maybe I didn’t walk enough? I don’t know, I don’t want to Monday morning quarterback. This recovery has been a doozy but ultimately I should be fine!

The surgeon also revealed pathology report today - he was able to achieve all clear margins, and the treatment response in the tumor that was removed was 99%! Looking forward (sorta) to starting mop-up chemo.

ginabeewell wrote:

boxhill wrote:Keeping my fingers crossed for you. Any idea why this happened?

Sounds like this is an “expected response” when you are displacing such a large chunk of an organ - fluid comes in to fill the void.

But in my case, I had pain and a fever which suggested the fluid may have been infected. In fact, we still don’t know whether or not that’s the case and maybe won’t for another day or so!

I find myself wondering if they discharged me too early? Or maybe I didn’t walk enough? I don’t know, I don’t want to Monday morning quarterback. This recovery has been a doozy but ultimately I should be fine!

The surgeon also revealed pathology report today - he was able to achieve all clear margins, and the treatment response in the tumor that was removed was 99%! Looking forward (sorta) to starting mop-up chemo.

Fantastic! Clear margins and a 99% dead tumour is a dream response!

Yes the fluid thing is a bugger but it does happen. I had free abdo fluid after my liver op - surgeon was a bit confused as to why in a young guy without complications, I was terrified it was ascites but as you say - it’s just what happens. It was still there when they tried to do my mapping for radiation therapy several weeks later, but after another week or two of gentle movement and frequent walking, and all resolved itself. Hopefully the same for you!

Checking out of MSK - finally!

They told me they would discharge me if I could stay off oxygen all day and maintain a pulse ox of 94 - which I did! I even walked four laps without feeling I was dying.

We meet with Dr Kemeny tomorrow afternoon and had to book out on a 10 pm flight - literally the only way we could get seats together.

Very interested to hear what’s next. Hoping against hope no Vectibix!

Oh hell yeah! Great news!!

Good! I had an infusion on Wednesday last week and met an older-than-me woman who was on Vectibix and had the hairiness thing and the rash, and had been in the hospital over the weekend with ascites--7 litres or so. Yikes! She didn't realize why she was so short of breath until her daughter, a NP, told her she looked 9 months pregnant. She and her H were sweeties, but not the research types, LOL!

I’m super frustrated coming out of my meeting with Kemeny.

Am I NED? She didn’t say so. And all Dr Kingham said was he thinks he got it all. They did do a CT scan to diagnose the fluid build up so I would think someone would have noted if they saw anything there.

She noted that pathology was “very good” and she wants to keep me on my current chemo including Vectibix. How long? Depends. No answer. If I didn’t have this board’s experiences with her treatment tendencies I would have no idea. And I’m not sure I do anyway.

I know I’m in an emotional place right now, in the middle of a tough recovery - but could we have just taken a moment to regroup on where we are right now?

I’m not asking for a celebration. Frankly even just understanding whether at this point I’m considered NED - or if there is some other hurdle to cross - would be helpful.

Not the same situation - yours is much better -- but a similar feeling of disappointment, when my triplet therapy stopped working in August, and I was advised to go back on Folfoxfiri. It felt like a major defeat -- not to mention the regimen is way harder, and I loose several days a month to recovering. So, I totally understand wanting that damn Vetibix to go away, and at least have pathway/timetable.

But here's the thing, if you're not NED today, you will be soon. You are in a much better place than you were, and will be living a lot longer than you originally thought. That is a huge win.

I hope I can follow in your footsteps.

JC

hopefulandstrong wrote:Not the same situation - yours is much better -- but a similar feeling of disappointment, when my triplet therapy stopped working in August, and I was advised to go back on Folfoxfiri. It felt like a major defeat -- not to mention the regimen is way harder, and I loose several days a month to recovering. So, I totally understand wanting that damn Vetibix to go away, and at least have pathway/timetable.

But here's the thing, if you're not NED today, you will be soon. You are in a much better place than you were, and will be living a lot longer than you originally thought. That is a huge win.

I hope I can follow in your footsteps.

JC

Thank you for that reminder. I know you are right, and frankly I think that’s part of why I feel so terrible feeling shitty. A close friend - the woman who was the gestational carrier for my twins - has metastatic breast cancer and it’s become clear in the past few days that she is terminal. She will leave behind three young boys who have already lost their dad to Alzheimer’s. And who knows the role the hormones we asked her to take to get pregnant on our behalf may have held.

It’s all just so scary sometimes. And I’m like worried about a rash?!

ginabeewell wrote:I’m super frustrated coming out of my meeting with Kemeny.

Am I NED? She didn’t say so. And all Dr Kingham said was he thinks he got it all. They did do a CT scan to diagnose the fluid build up so I would think someone would have noted if they saw anything there.

She noted that pathology was “very good” and she wants to keep me on my current chemo including Vectibix. How long? Depends. No answer. If I didn’t have this board’s experiences with her treatment tendencies I would have no idea. And I’m not sure I do anyway.

I know I’m in an emotional place right now, in the middle of a tough recovery - but could we have just taken a moment to regroup on where we are right now?

I’m not asking for a celebration. Frankly even just understanding whether at this point I’m considered NED - or if there is some other hurdle to cross - would be helpful.

You should really give yourself a break, we all know how hard this point on your journey can be. Remember, you just went through 2 MAJOR SURGERIES in the past 6 months on top of being in chemo and dealing with it’s serious side effects. You’re a champion, most humans NEVER have to go through what a lot of us have on here. Give the team at MSK a break, you’re insides are a mess right now, no CT or PET scan right now can show for certain what your status is, although your surgeon and Kemeny seem over all positive about the outcome. My first CT post hepatectomy was not clear, it wasn’t until the subsequent two that we were confident that I had achieved NED status. Take care of yourself, both in body and mind, things will get better.

Peace

Al

radnyc wrote:My first CT post hepatectomy was not clear, it wasn’t until the subsequent two that we were confident that I had achieved NED status. Take care of yourself, both in body and mind, things will get better.

Peace

Al

That actually super helpful to know. I guess I should have just asked but was afraid to on some level I am sure. I did take a peek at my CT and it looked like a mess. I am sure nobody could look at it and confidently tell me I am all set.

I also know that I’m having this angst because I’m exactly where you reference me being - this past year has had three surgeries and 19 rounds of chemo. And complications that were painful, required another procedure, and kept me from going home as planned. I’m freaking TIRED. And I know myself well enough to know I have a much harder time digging out of a funk when I’m just plain tired.

I’ll sleep in my own bed tonight and I’ll wake up feeling better tomorrow.

ginabeewell wrote:

radnyc wrote:My first CT post hepatectomy was not clear, it wasn’t until the subsequent two that we were confident that I had achieved NED status. Take care of yourself, both in body and mind, things will get better.

Peace

Al

That actually super helpful to know. I guess I should have just asked but was afraid to on some level I am sure. I did take a peek at my CT and it looked like a mess. I am sure nobody could look at it and confidently tell me I am all set.

I also know that I’m having this angst because I’m exactly where you reference me being - this past year has had three surgeries and 19 rounds of chemo. And complications that were painful, required another procedure, and kept me from going home as planned. I’m freaking TIRED. And I know myself well enough to know I have a much harder time digging out of a funk when I’m just plain tired.

I’ll sleep in my own bed tonight and I’ll wake up feeling better tomorrow.

Just want to echo what Radnyc wrote. I don't think they are being coy. I think they don't know because your surgery does such a number on your liver that it would be very hard for a scan to show anything. We have had different treatments but my first scan after surgery was over 6 months after surgery and 8 more rounds of chemo. It wasn't until then that they said the magic words "no evidence of disease"!

You have been through a lot and the unknown gets so mentally tough and add to it the beating our bodies take with all of these treatments, it is no wonder you are tired. You have made it past the next hurdle. Take a moment to celebrate that if you can before looking down the road to the next one.

Hope this helps,

Dave

Gravelyguy wrote:Just want to echo what Radnyc wrote. I don't think they are being coy. I think they don't know because your surgery does such a number on your liver that it would be very hard for a scan to show anything. We have had different treatments but my first scan after surgery was over 6 months after surgery and 8 more rounds of chemo. It wasn't until then that they said the magic words "no evidence of disease"!

You have been through a lot and the unknown gets so mentally tough and add to it the beating our bodies take with all of these treatments, it is no wonder you are tired. You have made it passed the next hurdle. Take a moment to celebrate that if you can before looking down the road to the next one.

Hope this helps,

Dave

Thank you so much - in fact, both of your experiences gave me some much better perspective and understanding of what’s being communicated and why. And being able to wrap my head around it goes a long way to feeling better about it all.

Not to mention being back in my own home thank goodness!

It’s my husband’s birthday today plus Halloween. I have costumes to finish up! Luckily my mom is here to help me!

I’m 18 days out from surgery (a few less from the drain installations) and still feeling pretty tired and beat up.

I went down to NW today for a pump flush and a check in with the nurse practitioner, just to bring them up to speed on surgery and plans for mop up chemo.

While we were in the waiting room, I felt a drop of liquid roll all the way down my side. What the? I unzipped my sweatshirt to find my t-shirt soaked! Ack!

In short order we figured out that my drains were leaking, one quite a lot. Eventually we heard back from MSK, who weren’t concerned and suspected it might be due to internal wounds closing up (a good thing). But we had several tense hours trying to figure out why it happened and what the hell to do about it - specifically should we leave NW before having someone take a look?

The answer was no: go home and redress it. Keep it dry in the meantime. Which is how I turned into a lady with a giant maxi pad taped to my chest - a solution that worked shockingly better than gauze or paper towels should you find yourself in a similar position!

My husband changed the dressings tonight with about 500% as much care and accuracy as yesterday’s home nurse. So that’s our last home nurse dressing change as far as I am concerned!

That said, I think it was stressful - he sweated all the way through and when he was done announced he was going to make himself a drink! Fair enough, kind caretaker!

My appetite still hasn’t recovered, and I’m craving weird things. Drinking a ton of milk, eating Kraft Mac and cheese, and just asked for a sliced apple. Maybe I’m eight again?

Trying to stay patient and give myself time. My parents come back tomorrow and I would like to get a little walking in with them.

It’s now been six weeks since surgery. I wish I could say I’m feeling so much better but this is the longest recovery ever. My red blood counts are still low, and I’m losing my breath climbing a set of stairs.

My drains, which were putting out 40/50 ml a day suddenly jumped to 170-185. No idea what’s going on. I had a CT scan the other day to prepare for a drain replacement.

In other words, these drains aren’t coming out any time soon. And chemo can’t restart until the drains come out. It feels like a terrible holding pattern.

We are trying to move things forward. I might just go to work next week, even if I still feel like hell. And we bought those tickets to Istanbul. I’m so mad at and bored with myself, maybe a little adventure will help?

My cancer buddy, who has stage 2 or 3 pancreatic cancer had surgery last week and it went super well. So well that she’s basically done - no mop up chemo or anything. On the one hand, I’m joyous for her. And on the other, totally jealous. Which isn’t helping my bad mood.

I’m looking forward to the holiday weekend to provide a little break in routine. We will head to Milwaukee to my parents’ place for Thanksgiving. Then on Friday, to a lake cottage we bought and just finished renovating. It will be our first night there! We don’t have all the furniture up there yet, and the range needs to be repaired, but we will camp and have a good time, I hope.

We bought this place before my diagnosis, and hired a contractor right away - he took a deposit, demoed the place, and then disappeared, which we discovered right before my diagnosis. (“How awful!” people would say when they heard, and we would respond, “Well, it’s not the WORST thing to happen to us this year.”)

It took a while to find another and get going. By then we were like, hey I don’t know how much time we have, let’s do it all and do it all right away. Kind of a budget buster for the modest purchase we thought we were making, but it’s going to be a beautiful place to spend time with friends and family. My mom is an interior designer so it’s all to her credit it turned out as lovely as it did!

Hey Gina

Sorry your recovery is taking longer than expected.

On the bright side — wow a lake cottage! When will it be fully done? Fresh air, and waking up to a beautiful peaceful lake. Certainly something to look forward to. Do you have a boat?

Maybe on those days when you’re bored, you can work on the ID with your mom?

Sending you best wishes for a speedy recovery!

Siti