Doing Disney with Stage 4 Cancer

[Disney_Fanatic25]

Try domperadone. You'll have to get it from a compounding pharmacy. You will need a prescription, but it works well.

Or pregnancy pops.

Thanks! I'll talk to my doctor about it.

 

[PatsMom]

I'm hoping someone can help I am having a lot of nausea and vomiting. I'm allergic to all of the typical anti nausea meds like zofran compazine reglan. The only one I can take is phenegran but it isn't working. I've tried sucking on pepermints and drinking flat soda but nothing is helping. I'm trying to not have to go in to the hospital. Any tips on getting this under control?

Depending on what state you live in, you could check on marijuana. It has helped some find relief from the nausea.

 

[Redwolf8812]

Yesterday, we asked the doctor some hard questions and received honest answers. My next scan is on the 25th. If it shows tumor growth, I have other options, most are hard chemos, but there's only a 20-30% chance that they will work. The miracle drug Herceptin doesn't work in 30% of patients. I'm in that 30%. I most likely will try at least one more chemo but I don't look forward to the harsh side effects. The treatment (TDM1) I'm on now has been fairly easy so I pray that the scan shows it's working.

When I decide to stop all treatments, she told me that liver failure is pretty painless. I would just fall asleep, be in a coma for a couple of days, and then pass away.

Not the kind of answers I wanted, but it is what it is.

"Help me. I know Jesus loves you very much and that you deserve it, so talk to him on my account..." - Saint [Padre] Pio de Pietrelcina (1887-1968), Capuchin

 

[Redwolf8812]

I'm hoping someone can help I am having a lot of nausea and vomiting. I'm allergic to all of the typical anti nausea meds like zofran compazine reglan. The only one I can take is phenegran but it isn't working. I've tried sucking on pepermints and drinking flat soda but nothing is helping. I'm trying to not have to go in to the hospital. Any tips on getting this under control?

What state do you live in? Here in NJ, marijuana has been approved for terminally ill patients, but there are a lot of hoops to jump through. There's a state-monitored website that you have to register on, as does you doctor, and it costs each $200. Then it's $600 for a month supply. My problem is that I live in NJ but am treated in PA, so it's a moot point for us, and anyhow, I really don't want a government agency having access to that kind of information about me.

 

[PatsMom]

Yesterday, we asked the doctor some hard questions and received honest answers. My next scan is on the 25th. If it shows tumor growth, I have other options, most are hard chemos, but there's only a 20-30% chance that they will work. The miracle drug Herceptin doesn't work in 30% of patients. I'm in that 30%. I most likely will try at least one more chemo but I don't look forward to the harsh side effects. The treatment (TDM1) I'm on now has been fairly easy so I pray that the scan shows it's working.

When I decide to stop all treatments, she told me that liver failure is pretty painless. I would just fall asleep, be in a coma for a couple of days, and then pass away.

Not the kind of answers I wanted, but it is what it is.

"Help me. I know Jesus loves you very much and that you deserve it, so talk to him on my account..." - Saint [Padre] Pio de Pietrelcina (1887-1968), Capuchin

I will be praying for good scan results for you. If you are not blessed with them, then I hope that you have lots of loving family to support you through the difficult times. Hopefully there is a treatment that will work for you! I assume that all the experimental drugs have been looked at too?

 

[stargazertechie]

Depending on what state you live in, you could check on marijuana. It has helped some find relief from the nausea.

This was going to be my recommendation as well if you live in a state with MMJ

 

[Redwolf8812]

So I've made a decision to stop feeling anxious and put it in God's Hands.

My recent bloodwork shows liver still functioning as it should. Thank You, Lord! I've made a decision that I can only have positive attitudes. Fear is of the devil. So, as far as the scan I have coming up on the 25th, I am looking forward to hearing great news on the results! Praise God!

As my friend said, I've got the "little liver that could". LOL.

- Penny

 

[bdink921]

I'm hoping someone can help I am having a lot of nausea and vomiting. I'm allergic to all of the typical anti nausea meds like zofran compazine reglan. The only one I can take is phenegran but it isn't working. I've tried sucking on pepermints and drinking flat soda but nothing is helping. I'm trying to not have to go in to the hospital. Any tips on getting this under control?

That's a tough one. Does kytril fall into your list of allergies? If not, it comes in tablet form but also as a 7 day patch. Scopolamine patches also are sometimes good too but have some side effects. Have you tried ginger? There are candies and teas with ginger.

 

[DisDee]

So I've made a decision to stop feeling anxious and put it in God's Hands.

My recent bloodwork shows liver still functioning as it should. Thank You, Lord! I've made a decision that I can only have positive attitudes. Fear is of the devil. So, as far as the scan I have coming up on the 25th, I am looking forward to hearing great news on the results! Praise God!

As my friend said, I've got the "little liver that could". LOL.

- Penny

My thoughts and prayers are with you Penny. I understand what you are going through as I have 2 different tests on the 27th. If the tumors have not grown I should be able to continue treatment as long as my cardiac test is good. If not, we'll have to come up with another course of treatment. As you said anxiety can get the best of us and I'm fighting with those feelings too. I know that worrying won't change the outcome but sometimes its hard not to.

It sounds like you have a strong faith and that is so important at a time like this. Fight like a girl!

 

[kimatiu]

Hi everyone. My name is Kim and I have stage 4 pancreatic cancer. I'm on a stiff multi drug chemo regimen that so far seems to be working. Still term I also but maybe will get more than a year to hang around the family is my hope.

We decided to plan some Disney trips to keep our spirits up. So far a family cruise on the Fantasy and last night booked a week long trip for husband and me to Disney world. The planning is a great distraction from all the chemo stuff. And looking at trip reports and pics of Disney food is a great wayti be entertained when I am too tired to get out of bed.

More later

 

[PatsMom]

Hi everyone. My name is Kim and I have stage 4 pancreatic cancer. I'm on a stiff multi drug chemo regimen that so far seems to be working. Still term I also but maybe will get more than a year to hang around the family is my hope.

We decided to plan some Disney trips to keep our spirits up. So far a family cruise on the Fantasy and last night booked a week long trip for husband and me to Disney world. The planning is a great distraction from all the chemo stuff. And looking at trip reports and pics of Disney food is a great wayti be entertained when I am too tired to get out of bed.

More later

Welcome, but sorry you are joining us. Glad your current chemo regimen seems to be working and I hope it buys you enough qualify time to get in a few Disney trips with the family. They are great memories to leave behind! And as you mentioned, planning the trips is a distraction for you. The only thing I didn't like about our last trip was that I was not hungry. Had to force myself to eat. Eating was always the best part of vacation for me so it is very sad for me to not want to eat!

 

[kimatiu]

Decided to book a trip to Disney for my husband and myself for early December. That's still within the year the oncologist gave me before I started chemo. Staying at the Wilderness Lodge. Got a pin for a free dining plan, only cost me 300 bucks to upgrade the room (ha ha). We had to move from a woods view to a courtyard view...and the reservation rep put us in a bunk bed room...grrr. Fortunately it still has a queen bed. But then the rep put in for one adult and one child dining plan. Sheesh. I know I'm not eating much now but I sure don't want to order off the kids' menu - only so many chicken fingers a girl can stand, right?! Supposedly another rep got that fixed - we'll see when we get there.

I had a lot of fun booking meals tho. Funny how I"m not hungry in RL but all the menus at Disney had me drooling. And all the pics of food - oh man do they look delicious. Wish sweets looked as good here. Maybe I just need a Mickey ice cream bar. That has got to be the cure all for chemo nausea don't ya think?

And I booked a cruise for the end of October with the rest of my family - on DCL. It will be our first time on DCL - we've done Dolphin (an old line that is long out of business), Carnival, and Princess. We're doing the Western Caribbean route. I hope to have enough energy to get off the boat and go to at least one beach. If not, there seems to be stuff to do on board.

So I'm getting in my Disney fix. If I get a few extra months, who knows...an Alaska cruise maybe or the Adult Disneyland (Las Vegas)

Trying to stay positive and love having Disney fun to plan and look forward to.

Hope everyone else is hanging in there.

 

[Redwolf8812]

My most recent scan looks good. Only 1 remaining tumor and it's smaller than before. Doctor is thrilled and says to keep "storming the gates of Heaven" with our prayers. Thank You, Lord! Thank you Mother Mary and Blessed Zelie Martin and all the angels and saints! Love you all!

 

[PatsMom]

My most recent scan looks good. Only 1 remaining tumor and it's smaller than before. Doctor is thrilled and says to keep "storming the gates of Heaven" with our prayers. Thank You, Lord! Thank you Mother Mary and Blessed Zelie Martin and all the angels and saints! Love you all!

Wonderful news. Hope that the good results just keep on coming! I am so hoping that the taxotere I am starting on will shrink the tumors. I think I will be much more comfortable then. Sick of taking higher and higher doses of pain meds. The palliative care people are doing a great job and will keep working with me.

I have another Disney trip scheduled for this fall and I am not cancelling. My daughter will not be able to go because of her school schedule and my husband can't push a wheelchair. So I think it will be a scooter trip. Not really looking forward to that since I am afraid that I am going to run someone over! Not only that but if I want it at the resort I will have to deal with loading and unloading it on the bus. I can see the lovely looks I am going to get now - I will get off the scooter, my husband will drive it on the bus and park it, then the two of us will board. That is how it is supposed to work but people think you are getting some huge benefit boarding first and "cheating" the system because of the driver switch.

Hope everyone has a wonderful Fourth of July holiday.

 

[kimatiu]

My most recent scan looks good. Only 1 remaining tumor and it's smaller than before. Doctor is thrilled and says to keep "storming the gates of Heaven" with our prayers. Thank You, Lord! Thank you Mother Mary and Blessed Zelie Martin and all the angels and saints! Love you all!

That is awesome news. I love it when results seem to surprise the docs! Keep up the positive thoughts and prayers.

 

[kimatiu]

I tried a scooter at Walmart the other day for the first time - was just too tired to walk anymore. And I had the same reaction - was terrified I'd run into someone. People kept popping out of aisles without looking down. I know I do the same thing.

 

[Piper]

I tried a scooter at Walmart the other day for the first time - was just too tired to walk anymore. And I had the same reaction - was terrified I'd run into someone. People kept popping out of aisles without looking down. I know I do the same thing.

After you have used a scooter for a while (or a power wheel chair) you get used to really watching the people around you. I always check carefully before I cross an aisle. I have gotten much better at anticipating what others will do. One of my biggest pet peeves at a store is people who block the aisle with their carts and won't move them!

 

[kimatiu]

Welcome, but sorry you are joining us. Glad your current chemo regimen seems to be working and I hope it buys you enough qualify time to get in a few Disney trips with the family. They are great memories to leave behind! And as you mentioned, planning the trips is a distraction for you. The only thing I didn't like about our last trip was that I was not hungry. Had to force myself to eat. Eating was always the best part of vacation for me so it is very sad for me to not want to eat!

That is my biggest worry too - that I won't be hungry enough to really enjoy all the good Disney food. I plan to have 3 weeks off chemo before the cruise and hopefully be done with chemo be for the WDW trip in December. Hopefully 3 weeks will be enough time to get a little appetite back.

I am also really worried about being so tired I can't enjoy stuff or walk around the ship. In WDW we are already thinking about a wheelchair. But that seems awkward on the boat with narrow halls and doors. Will play it by ear. The local hospital here has started a program of physical therapy for cancer patients. I go tomorrow to be evaluated. The therapy is supposed to help build up stamina. That would be a good thing.

 

[ross0354]

Hello everyone! This thread is exactly what I've been looking for! My husband (29yrs old) was diagnosed with stage 4 cholangiocarcinoma (bile duct cancer) in March 2013. It was always our dream to bring our son, 2yrs old, to Disney someday. With so much uncertainty in the future, we decided to go September 2013.
My husband has been getting chemo every other week since he was diagnosed in March. The chemo and the cancer itself leave him feeling pretty run down most of the time. He has significant pain, fatigue, and nausea. We are planning on going for 1 week, doing 1 park/day for 4 days and taking the other days off. We're also renting a scooter and planning to return to the resort in the afternoon for rest/nap time. Does anyone have any other tips to make things go smoothly?
We are planning on staying at Old Key West and using the busses to get to the parks. Any tips for transportation?
Do you think he could benefit from using a GAC?
Also, has anyone had to obtain medical care while at Disney? My biggest concern is my husband sometimes develops ascites and needs to have paracentisis to have the fluid drained. At home, he can just go outpatient to the hospital and have it done in about 30minutes. Any tips on how such a procedure could be coordinated while at Disney? Especially if we won't have a car.

Thank you!

 

[ttintagel]

Do you think he could benefit from using a GAC?

It's hard to say. What do you think his needs may be, beyond what the scooter will take care of? He may be a bit slow getting in and out of ride vehicles, but you don't need a GAC for that - just tell the CM at the load/unload area. (The Peoplemover and Peter Pan are the only moving walkways that can't be slowed.) Can he walk up or down a few steps if he needs to?

The scooter can go in most lines, but there are some, like Pirates of the Caribbean, where he'll have to transfer into a manual wheelchair.

My advice is to read up on the attractions as much as you've got time for, make note of anything he might need help with, then go ti City Hall when you're there and explain it to them and see what they recommend. The DisAbilities FAQ will also have lots of info on different rides.

He has significant pain, fatigue, and nausea.

I've read that Star Tours, Dinosaur, Mad Tea Party, and Soarin' have been known to give nausea-prone folks motion sickness, FWIW. When I was going through chemo, certain smells triggered nausea, but I'm not sure if there's much you can do about that. I've heard you can request special allergy cleanings for hotel rooms, but I'm not sure who to call about it. I've asked for unscented soaps and shampoos, but have been told no and always end up bringing my own.

Also, has anyone had to obtain medical care while at Disney? My biggest concern is my husband sometimes develops ascites and needs to have paracentisis to have the fluid drained. At home, he can just go outpatient to the hospital and have it done in about 30minutes. Any tips on how such a procedure could be coordinated while at Disney? Especially if we won't have a car.

I've never needed anything that specialized, so take this with a giant grain of salt, but I was happy with the general ER care I got at Florida Celebrations Hospital for a broken bone. Your husband's oncologist may be able to recommend someplace better suited. I went in an ambulance, but I'm sure OKW would arrange a taxi for you.