Re: New guy with old questions.

[JP66]

Hi everybody,

My thoughts and prayers go out to each and everyone of us on this board. Here's hoping we all achieve NED in 2024!

Anyways, a quick introduction:

In August of this year I finally realized that the narrow stools and blood in my stool was not just from hemorrhoids so I got myself scheduled for a colonoscopy. In October of '23 I had my colonoscopy and they found a tumor 7.4 cm above the AV. Initially I had high hopes of having caught this early, but those hopes were dashed when the biopsy came back showing Stage IV. That was the bad news. The good news was that the metastasis was restricted to two left side Common Iliac lymph nodes, and I learned ) that in Japan I would actually be considered Stage III and many doctors in the U.S. treat my situation with intent to cure and not just palliative care. (Japanese Classification of Colorectal, Appendiceal, and Anal Carcinoma)(Does a fine line exist between regional and metastatic pelvic lymph nodes in rectal cancer). Initially I was seeing a group in Norwalk, CT at the Whittinger Cancer center, but I switched to Memorial Sloan Kettering and after several initial consultations my 3 doctors outlined a treatment plan that was essentially a modified version of total Neo-adjuvant therapy with the possibility of no surgery depending on my response. I went in for a radiation simulation and was two days away from starting treatment when the lead doctor from MSK gave me a call and informed me that the MSK tumor board of 50+ doctors had met the day prior and declared my case to be officially Stage IV therefore not eligible for curative treatment, but only palliative lifetime chemo. I was devastated.

Fast forward one week, and I had reconnected with the group in Norwalk, and the lead oncologist there disagreed with the MSK decision and reassured me that being young and otherwise extremely healthy and not having poly metastatsis but rather oligo and only in the two lymph nodes that he and his group would apply the "Full Monty" or slightly modified Total Neo-adjuvant therapy including 5 weeks of radiation+Xeloda followed by 3 months chemo using FOLFIRINOX followed by surgery. I was back on the proverbial Cloud None when I heard that. I realized my odds were still bad, but at least these doctors were willing to give a shot at a cure.

In the meantime I have done all I can that I believe will help. I eliminated alcohol, I became 100% vegan (I was already 99% there as my wife and daughter have been vegan for years), also decided to go gluten free and try to stay away from sugary foods or foods with high glycemic indexes like white rice opting for a diet heavy in cruciferous vegetables, beans, legumes, fruits, and nuts. The best news so far is on the last day of radiation treatment my radiation oncologist brought in a before and after CT scan showing that the Common Iliac lymph nodes had returned to normal size and were not "lighting up" and add to that the fact that my stool is returning to normal size and I haven't had any blood in my stool for weeks now I have a tiny bit of hope things are moving in the right direction.

For now though I am a bit nervous about starting the next step. On Friday I go in for port implant and then on the following Monday I'm scheduled for my first infusion of Leucovorin, Irinotecan, Oxaliplatin, and Flurouracil. The latter will be administered via a pump over 48 hours which brings me to my first question for the board.

I am a bit nervous about how I am going to sleep whilst attached to a pump. Typically I'm a side sleeper who moves side to side often plus I get up normally 3-4 times a night to visit the bathroom.

What advice do people here have as regards tips for sleeping with a pump?

Thanks everyone for sharing all the great info here!!

Joe

[rp1954]

Hi everybody,
My thoughts and prayers go out to each and everyone of us on this board. Here's hoping we all achieve NED in 2024!

Anyways, a quick introduction:In August of this year I finally realized that the narrow stools and blood in my stool was not just from hemorrhoids so I got myself scheduled for a colonoscopy. In October of '23 I had my colonoscopy and they found a tumor 7.4 cm above the AV. Initially I had high hopes of having caught this early, but those hopes were dashed when the biopsy came back showing Stage IV. That was the bad news. The good news was that the metastasis was restricted to two left side Common Iliac lymph nodes, and I learned ) that in Japan I would actually be considered Stage III and many doctors in the U.S. treat my situation with intent to cure and not just palliative care. (Japanese Classification of Colorectal, Appendiceal, and Anal Carcinoma)(Does a fine line exist between regional and metastatic pelvic lymph nodes in rectal cancer). Initially I was seeing a group in Norwalk, CT at the Whittinger Cancer center, but I switched to Memorial Sloan Kettering and after several initial consultations my 3 doctors outlined a treatment plan that was essentially a modified version of total Neo-adjuvant therapy with the possibility of no surgery depending on my response. I went in for a radiation simulation and was two days away from starting treatment when the lead doctor from MSK gave me a call and informed me that the MSK tumor board of 50+ doctors had met the day prior and declared my case to be officially Stage IV therefore not eligible for curative treatment, but only palliative lifetime chemo. I was devastated.

Fast forward one week, and I had reconnected with the group in Norwalk, and the lead oncologist there disagreed with the MSK decision and reassured me that being young and otherwise extremely healthy and not having poly metastatsis but rather oligo and only in the two lymph nodes that he and his group would apply the "Full Monty" or slightly modified Total Neo-adjuvant therapy including 5 weeks of radiation+Xeloda followed by 3 months chemo using FOLFIRINOX followed by surgery. I was back on the proverbial Cloud None when I heard that. I realized my odds were still bad, but at least these doctors were willing to give a shot at a cure.

In the meantime I have done all I can that I believe will help. I eliminated alcohol, I became 100% vegan (I was already 99% there as my wife and daughter have been vegan for years), also decided to go gluten free and try to stay away from sugary foods or foods with high glycemic indexes like white rice opting for a diet heavy in cruciferous vegetables, beans, legumes, fruits, and nuts. The best news so far is on the last day of radiation treatment my radiation oncologist brought in a before and after CT scan showing that the Common Iliac lymph nodes had returned to normal size and were not "lighting up" and add to that the fact that my stool is returning to normal size and I haven't had any blood in my stool for weeks now I have a tiny bit of hope things are moving in the right direction.

For now though I am a bit nervous about starting the next step. On Friday I go in for port implant and then on the following Monday I'm scheduled for my first infusion of Leucovorin, Irinotecan, Oxaliplatin, and Flurouracil. The latter will be administered via a pump over 48 hours which brings me to my first question for the board.

I am a bit nervous about how I am going to sleep whilst attached to a pump. Typically I'm a side sleeper who moves side to side often plus I get up normally 3-4 times a night to visit the bathroom.
What advice to people here have as regards tips for sleeping with a pump?
Thanks everyone for sharing all the great info here!!

My wife may have a number para aortic LN met similarities, more details needed.
A lot of my wife's treatment for metastatic colon cancer originates from Japanese CRC literature sources and experimental treatments.
At least in 2010 and before, Japan used sharp surgery instead of radiation for rectal cancer, so there was more commonality in CRC care.
Also the were a number of successful Japanese papers about perioperative chemo that led to no major changes in practice, but are still relevant.

In 2010 there was a lot of prior discrepancy about stage severity and equivalence for lymph nodes, mostly in European papers.
At that particular moment in 2010, oncologists oriented to western pharma were trying to treat both stage III and IV CRC with Folfox + Avastin! (before two trial failures in stage 3 patients)

A particular difference that I noticed in some Japanese results was their use of continuous (oral 5FU) chemo rather than cycles, or at least, longer cycles of active treatment with UFT (an asian predecessor to Xeloda), in chemical combinations that had the special properties of enchancing immunochemo and inducing cancer cell somnolence. So what we decided to do was play for time, add extra but nicer adjuncts to inhibit mets and maintain body functions much better, use truly continuous chronomodulated oral chemo up to as close to the moment of surgery as possible, and to rely on surgery to remove the worst actors that wouldn't die chemically.
The special property of continuous (chronomodulated/targeted/immuno) chemo is the potential for "too many"/"hopeless mets" to behave as if they are merely a pair (or longer series) of individual "oligio met surgical cases", to be done serially over some weeks or months.
Another special property of continuous (chronomodulated/targeted/immuno/nutrient packed) chemo is the ability to maintain good bloodwork with more meaningful blood measurements even for years on chemo with a high quality of life.

I have come to believe that strong cyclical chemo has special strength in two cases:
1. First is the burn out of susceptible stem cell, clusters, seeds, and smaller micromets within 5-8 treatments in stage 2 and stage 3 patients with susceptible cell types; susceptibility varies.
2. Second is the induction treatment and salvage of highly metastatic CRC patients who may have dozens or even hundreds of mets larger than 10 mm. The problem with this second set of patients is the durability of their organs and CBC on aggressive chemo.

I believe that many stage 4 patients aiming for curative results may have more choices for chemo than standard care with cyclical chemo forever.
The question that I asked on my very first interview has never been satisfactorily addressed to me: Is there an option to switch from induction treatment to continuous treatment.
In our case, we winged it on continuous oral chemo with many (polite) inhibitors, got a second surgery that afterwards the surgeon still thought was a write off (too many mets, shot through, and bursting out the side walls), but we foiled his concerns by being extra aggressive in our polite chemo plan, going back on "aggressive polite chemo" sooner and faster e.g. 24 hrs vs 3-6 weeks.

Anyway, oral chemo is one way to get rid of a companion pump.

[Peregrine]

... I am a bit nervous about how I am going to sleep whilst attached to a pump. Typically I'm a side sleeper who moves side to side often plus I get up normally 3-4 times a night to visit the bathroom.

What advice to people here have as regards tips for sleeping with a pump?
... Joe

Joe-

I understand your concern about sleeping with a pump attached. I don't have any experience with this kind of pump, but I know from reading various articles that there can be serious problems if a patient mis-handles the pump while it is attached.

What I would recommend first is to read the article below to see what kinds of problems can arise with patients who are on one of these so-called "ambulatory" pumps:

https://www.mskcc.org/cancer-care/patient-education/continuous-infusion-elastomeric-pump

Then, prepare your questions for the nurses in the infusion center, since they are the ones who know what the possible problems are and what can be done to avert them.

Good luck !

P.S. Thanks for updating your signature.

[JP66]

Thanks RP,

I thoroughly enjoyed your posts on Utahgals thread as well. Clearly having been dealing with this for over a decade you are a veritable encyclopedia of information and I have learned a ton already from you posts; so thanks again!

Might I ask what "polite" chemo is? I'm very interested in discussing this topic with my doctors, but its a term I'm unfamiliar with at the moment.

[utahgal7]

I agree with Peregrine that advice may depend on what type of pump you get. Alot of colorectal cancer patients get a pump that is stored in a fanny pack. Yeah, think 1990s, lol.

However, I think the most important consideration is not to lie down on the clear tubing connected to the pump. One way around that is to place a chair next to the bed. Then you want to place the pump on the chair and let the tubing drop to the floor. Then you can get comfortable on your side. I wouldn't recommend moving around too much. If you lie on your back, you can place the pump on your chest. I think stomach sleeping may be out of the question until you are off chemo.

Hope this helps!

Paige

[JP66]

I agree with Peregrine that advice may depend on what type of pump you get. Alot of colorectal cancer patients get a pump that is stored in a fanny pack. Yeah, think 1990s, lol.

However, I think the most important consideration is not to lie down on the clear tubing connected to the pump. One way around that is to place a chair next to the bed. Then you want to place the pump on the chair and let the tubing drop to the floor. Then you can get comfortable on your side. I wouldn't recommend moving around too much. If you lie on your back, you can place the pump on your chest. I think stomach sleeping may be out of the question until you are off chemo.

Hope this helps!

Paige

I like the chair idea. Thanks.

Fortunately I'm most definitely not a stomach sleeper so that won't be a problem. I sleep on the left side of the bed so if I use the chair idea I just need to keep from trying to sleep on my left side. I don't really think that should be too much trouble

Joe

[roadrunner]

Sleeping with a pump is not an issue. Put it in a safe place with the line clear. Back sleeping is better, but side sleeping is fine—the lines can be adjusted to give you slack. Don’t do vigorous gymnastics whilst in bed. Even if something happens it will just beep, then you’ll go in and get it fixed.

[JP66]

Sleeping with a pump is not an issue. Put it in a safe place with the line clear. Back sleeping is better, but side sleeping is fine—the lines can be adjusted to give you slack. Don’t do vigorous gymnastics whilst in bed. Even if something happens it will just beep, then you’ll go in and get it fixed.

Thanks for that reassurance; it means a lot! Joe

[Peregrine]

Joe -

Here's some information about port (central line) implantation:

https://www.mskcc.org/cancer-care/patient-education/your-implanted-port

[Peregrine]

... Typically I'm a side sleeper who moves side to side often plus I get up normally 3-4 times a night to visit the bathroom.
...
Joe

Another thought: Maybe your frequent trips to the bathroom are related to Benign Prostatic Hyperplasia (BPH). In your blood test panels do they test for the PSA marker? If so, is your PSA within the normal range for your age, or is it elevated?

[JP66]

... Typically I'm a side sleeper who moves side to side often plus I get up normally 3-4 times a night to visit the bathroom.
...
Joe

Another thought: Maybe your frequent trips to the bathroom are related to Benign Prostatic Hyperplasia (BPH). In your blood test panels do they test for the PSA marker? If so, is your PSA within the normal range for your age, or is it elevated?

Unfortunately, the radiation therapy has changed my bowel control so typically I visit the bathroom at night now as a precaution when passing gas so as not to have an accident whilst in bed although I am wearing a diaper 24/7 now as I have had an accident twice while walking my dogs in the woods behind my house. Hopefully this is temporary and will improve once the radiation side effects wear off. I am right now only 10 days post treatment so they say this is the worst period.

[Rock_Robster]

Agree with other comments that sleeping with the “ball” type pump was no issue for me. I kept the ball on top of the blankets so it wouldn’t get tangled up, and then just slept on my side as normal. I also understand you don’t want to overheat the ball too much (as it’s thermally activated) so another reason (probably psychological) not to snuggle up with it.

If you have one of the electronic “pump” type pieces of kit then yes I can see it might need a little more logistics. The main thing though is that they give you enough line length that you can keep the thing away from you and not get tangled as you move around at night.

My other tip if you’re in a cooler climate is a hoodie with a “kangaroo” style front pocket is great during the day - you can run the line underneath the jumper and up into the pocket almost completely unnoticed.

[Rock_Robster]

... Typically I'm a side sleeper who moves side to side often plus I get up normally 3-4 times a night to visit the bathroom.
...
Joe

Another thought: Maybe your frequent trips to the bathroom are related to Benign Prostatic Hyperplasia (BPH). In your blood test panels do they test for the PSA marker? If so, is your PSA within the normal range for your age, or is it elevated?

Unfortunately, the radiation therapy has changed my bowel control so typically I visit the bathroom at night now as a precaution when passing gas so as not to have an accident whilst in bed although I am wearing a diaper 24/7 now as I have had an accident twice while walking my dogs in the woods behind my house. Hopefully this is temporary and will improve once the radiation side effects wear off. I am right now only 10 days post treatment so they say this is the worst period.

If you’re 10 days out now then yes you’re in the thick of it and this should definitely improve over the next couple of months. While several years later I wouldn’t say I’m at 100%, it’s quite manageable.

[Peregrine]

Thanks RP,

I thoroughly enjoyed your posts on Utahgals thread as well. Clearly having been dealing with this for over a decade you are a veritable encyclopedia of information and I have learned a ton already from your posts; so thanks again!
...

There are other members here who have also found rp1954's posts to be useful:

Link to rp1954's previous posts https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=57693&p=454654#p454654

rp1954's approach to do-it-yourself (DIY) treatment planning
https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=65882&p=510476&hilit=rp1954#p510476

[JP66]

If you’re 10 days out now then yes you’re in the thick of it and this should definitely improve over the next couple of months. While several years later I wouldn’t say I’m at 100%, it’s quite manageable.

Thanks for the input. It's so nice to have found a resource full of people that have already experienced what I have yet to go through. Here's hoping my chemo which starts Monday Jan. 29th, 2023 is tolerable.

Joe