The Colon Club

A recap: My DW has been dealing with a number of very unpleasant symptoms. It all started January 23, with a small bowel obstruction, then surgery to correct that, 37 days in the hospital, then discharge to heal. But 6 weeks after discharge she started getting ascites and edema, so she went back to the hospital for diagnostics on May 3, showing significant progression, then spending 11 days there and getting started back on FOLFOX. She is handling it OK but there doesn't seem to be any recovery of symptoms between cycles. She still has ascites and edema, severe enough that she can barely walk, has pain and nausea that have been difficult to control, and has been on TPN since around February 1 because she is hardly eating anything. She also occasionally has a tremor in her hands and fingers, and has taken on a gloomy countenance, which had not been there much before except for short periods when she would snap out of it.

We have made numerous adjustments to our home and to the medicine regimen to try to get her comfortable. I suggested a hospital bed, but she said no, so we just got a regular adjustable bed. That has helped a lot because she can shift her own position. She has started on the Fentanyl patch, with liquid Oxy for breakthrough pain, and that has helped too. The dose on the patch is about to be adjusted from 12 to 25. She is taking zofran 8mg x 3 times daily, the type that dissolves in the mouth. She tried Lasix but that was stopped because it's not effective. They tried paracentesis but could only extract .5 L of fluid, which did not make a dent. We have home Oxygen, TPN, got a walker, tables that can go over the bed for computer and food, since she can eat a little bit. She asked me to get her a wheelchair so I have one on order. I've had to go out and get her a new bunch of clothes because none fit her anymore with 20+ kg of additional body weight from the fluid. She doesn't want any visitors and now is even asking me to leave her alone more. The optics of the situation seem dire. On a positive note, even though she is in bed 99% of the time she is still fully alert and coherent. Is this the kind of thing that other caregivers have dealt with and what do you think happens from here? The doctors seem optimistic that the chemo will do something for the symptoms but I know that doctors are in the optimism business and I would like to know what the reality is. Any thoughts?

Is home/outpatient Palliative Care available through your hospital system?

I have been on Palliative Care for several years due frail health. It has been a life-enhancing service for both me and for my immediate family members.

Palliative Care looks at me as a whole person. Mind, body, and soul. Their services also include my immediate family members, providing counseling and support. My family is healthier for the involvement of Palliative Care.
Karen

MissMolly wrote:Is home/outpatient Palliative Care available through your hospital system?

Karen,

Thank you for your reply. Yes we have been receiving outpatient palliative care from our cancer center for about the past year, and they have been great. We have been considering getting home care too but we're not sure we're ready to pull the trigger on that because we are not too keen on having people in our home, especially strangers. And we certainly aren't ready for hospice, because I don't see any way to get rid of ascites or edema without palliative chemo of some kind. So for now, we are in a bit of a holding pattern with my DW in bed almost all the time, trying to deal with the nausea first, then next the weakness/fatigue. At least the new 25 mcg Fentanyl patch seems to be working better than the 12.

My Palliative Care services are home-based, clinical team members coming to my home. Physical therapy, RN nursing, care manager, physician, psychologist, and even a chaplain. It sounds like your wife would benefit from home physical therapy. Or does having home care seem too intrusive?

I have been on TPN. I have also experienced excessive fluid retention while on TPN/partial parental nutrition. Meeting with the compounding speciality pharmacist, he was able to reduce the concentration of the formulation. The less concentrated parental nutrition formulation was less taxing on my liver, pancreas and kidneys, and my body edema eased. Have you had anyone (pharmacist or nutritionist) review your wife’s parental nutrition orders recently to see if the current TPN formulation is exacerbating her edema/tissue fluid?
Karen

I have ascites in my abdomen. They can drain it to relieve the pressure. Right now I'm controlling how much is manufactured by the cancer by wearing a girdle 24/7. Even sleeping in it.

It was suggested by my surgeon. It truly does help. I still get uncomfortable when I eat too much but I can snack all day long along with smaller meals.

Before draining and wearing the girdle, it was very painful if I stood too long or went for walks.

Restricting the belly from expanding keeps the liquid from building up.

Does she have edema in the feet/legs? Try compression socks. Really work. Nurse saw DH wearing them on Tuesday and said she wished all her patients wore them. They come in many different levels of compression. You may have to help get them on. Also leg massage, gently stroking up the leg. Google "lymphedema massage". If it doesn't help, it at least feels good.

Keep up with water: seems counter-intuitive but good water better than fluid! Is she always thirsty? Try water with electrolytes.

Elastic waist sweat pants with adjustable ties help with weight shifts. I've found a lot at Kohl's called "track pants" or "training pants" that many people wear all the time. Some nylon, some cotton. Feels less like "sick clothes" and more like real clothes.

YOu mentioned a computer...how about an Ipad which is lighter weight? Read, check email, play games, etc. Good for taking to the infusions too.

DH had such bad swelling in his legs after surgery that it took about 10 weeks to go down. He could barely walk. But after two FOLFOX treatments, it was better. We were actually told it would never get better.

Robino1 wrote:I have ascites in my abdomen. They can drain it to relieve the pressure. Right now I'm controlling how much is manufactured by the cancer by wearing a girdle 24/7. Even sleeping in it.

It was suggested by my surgeon. It truly does help. I still get uncomfortable when I eat too much but I can snack all day long along with smaller meals.

Before draining and wearing the girdle, it was very painful if I stood too long or went for walks.

Restricting the belly from expanding keeps the liquid from building up.

Hey robino . How much ascites do u have? What symptoms does it cause?

Sara!!!! wrote:

Robino1 wrote:I have ascites in my abdomen. They can drain it to relieve the pressure. Right now I'm controlling how much is manufactured by the cancer by wearing a girdle 24/7. Even sleeping in it.

It was suggested by my surgeon. It truly does help. I still get uncomfortable when I eat too much but I can snack all day long along with smaller meals.

Before draining and wearing the girdle, it was very painful if I stood too long or went for walks.

Restricting the belly from expanding keeps the liquid from building up.

Hey robino . How much ascites do u have? What symptoms does it cause?

According to my last CT scan, it was reported as moderate. The symptoms are an extended belly. Eating a full meal will cause significant discomfort as the stomach expands and puts pressure on everything. The girdle really helps in restricting the amount of fluid but also aids in that discomfort factor as it doesn't allow the belly to fully expand. Think of when you've eaten that huge Thanksgiving meal and you have to unbotton those pants. That's pretty much how I feel if I eat a full meal.

I just can't 'unbutton the pants'.

I suggested the girdle to my DW and she looked shocked... her abdomen is too tender and painful to put pressure on it like that. She tried compression stockings but that made the fluid all go up to her abdomen which she found to be worse than just having the swollen legs.

She has been vomiting a lot of green liquid and now she is down by 10 pounds. Hopefully that's the FOLFOX doing its job but what an unpleasant way to go about it!

I just don't understand why they don't drain the fluid!

Once drained she would be able to use a girdle.

Hey RObin,

We asked DH's oncologist the same question...why not drain? The response was to see if Vectabix does its job (so far it's been doing something because his belly is shrinking and the liver function tests are improving) and then maybe do some diurectics later. I've also read that the pockets have to be big enough to drain in and a good location.

And since DH is no longer on Avastin, he was also able to discontinue the blood pressure meds. Those meds can cause fluid build up too.

Risto, did you try Ativan for nausea?

M

mhf1986 wrote:Hey RObin,

We asked DH's oncologist the same question...why not drain? The response was to see if Vectabix does its job (so far it's been doing something because his belly is shrinking and the liver function tests are improving) and then maybe do some diurectics later. I've also read that the pockets have to be big enough to drain in and a good location.

And since DH is no longer on Avastin, he was also able to discontinue the blood pressure meds. Those meds can cause fluid build up too.

Risto, did you try Ativan for nausea?

M

Makes sense.

Good to hear that there is improvement! When my ascites came back, I knew it was not good news. I knew it was back before even getting the CT scan that confirmed it. As soon as I felt and saw the belly getting a bit bigger, I put the girdle on immediately and have been wearing it ever since.

There is pressure but not debilitating pressure like before whe I was first diagnosed with the metastasis.

I've stopped Avastin in preparation for possibly getting HIPEC done. I'll know for sure on the 13th. At that point I have to stop chemo. That is a scary thought ... With the stop of Avastin, hopefully I can get off the high blood pressure med also!!

risto wrote:I suggested the girdle to my DW and she looked shocked... her abdomen is too tender and painful to put pressure on it like that. She tried compression stockings but that made the fluid all go up to her abdomen which she found to be worse than just having the swollen legs.

She has been vomiting a lot of green liquid and now she is down by 10 pounds. Hopefully that's the FOLFOX doing its job but what an unpleasant way to go about it!

Hey risto can u tell me how much ascites does your wife have? Have the doctors said what's causing it? Peri mets?

They attempted parecentesis on my DW however they were only able to get a half liter. It was challenging for them to even get at this small spot. We were told that it is because the fluid is accumulating in a lot of small pockets that are walled off from each other by scar tissue, tumors, or whatever. I saw the imaging on the ultrasound, and there were apparently large areas but they did not look clean, with some echo coming back it was assumed there is vasculature in these features, so they would not go there, and they are saying that's soft tissue tumors not fluid. In fact they are suggesting that most of the swelling is edema not ascites, i.e. it is fluid trapped within other tissues, so it can't be tapped. Altogether I figure she has about 20kg of fluid. At least we got her pain under control with a 25mcg patch changed every 2 days instead of 3. Her nausea is pretty well controlled now too (Zofran + Reglan) and she hasn't thrown up since Wednesday. She is still having the FOLFOX every 2 weeks and is due for CT scan beginning of July.

I'm sorry your wife is having such a hard time!*hugs* I hope she feels better soon!*hugs* I'm glad her pain and nausea are under control.