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Old 12-26-2012, 07:41 AM   #1
Redwolf8812
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Doing Disney with Stage 4 Cancer

Was wondering if anyone is interested in a thread like this - for patients and/or caregivers. We could share tips, commiserate, etc. I've been battling breast cancer since July 2010 and have enjoyed 3 trips to Disney World with my family since diagnosis. It has its ups and downs and I always enjoy seeing my family have fun. We live in Jersey and have always driven. Last time, we took the auto train home. I always wondered how others handle side effects of treatments while vacationing.

Penny
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1972 - 1984 many visits
1993 - Yacht Club, honeymoon, October
2001 - offsite, first visit with 2 kids, May
2002 - Fort Wilderness, October
2004 - Fort Wilderness, first visit with 3 kids, October - November, Food & Wine Festival, trick-or-treating in the campground
2006 - Fort Wilderness, October - November, Food & Wine Festival, trick-or-treating in the campground
2008 - Fort Wilderness, October - November, Food & Wine Festival, Mickey's Not So Scary Halloween Party, trick-or-treating in the campground
2011 - June - Old Key West & Bay Lake Tower, first visit as DVC owners after selling camper & truck, first visit post-cancer diagnosis (stage 3)
Easter 2012 - Animal Kingdom Kidani, first visit post-stage 4 cancer diagnosis
November 2012 - Boardwalk Villas
May 2013 - Treehouse Villas
December 2013 - Saratoga Springs
Reservation for 6/26-6/30/14 Saratoga Springs
next - it's all in God's Hands
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Old 12-26-2012, 04:29 PM   #2
LarryFmScotland
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I think your advice would be welcomed by people who are helping people with cancer have a vacation, or have cancer themselves.

I imagine that taking your time and finding moments to rest are important. One of the wonderful things about Walt Disney World is that you can forget your problems to some extent, there is nothing much to remind you of your day to day life. I find that when I'm there I can relax, despite it being a busy vacation destination.

My father passed away from cancer some 12 years ago. I wish I'd taken him to Walt Disney World with me, he would have loved it.

Regards Larry.
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Old 12-26-2012, 07:08 PM   #3
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My twin sister was diagnosed with stage 4 breast cancer and went to DW a couple of times. She was exhausted much of the time but she rented an ecv and carried a bag with all of her medicine. Objectively she should not have gone but she had some wonderful moments with her grandkids which she wouldn't have wanted to miss.
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Old 12-27-2012, 10:29 AM   #4
lmc318
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I would love a thread like this. I was diagnosed in July with Cancer of an Unknown Primary, which isn't really staged, but is metastatic by nature, so at the very least it's stage 3. We are planning a trip in November 2013. I'm calling it my Survivor's Trip and I've invited everyone in my family to go. So far my parents have said yes, for sure, and my sister and her family are a probably. My brother and his family is a maybe. DH's family are nos. Not surprising. They don't travel and MIL is on dialysis, so she won't go.

I've been to WDW several times, most recently in October of 2011, but never with cancer. I know things are different now. Mainly, I have lymphedema in my right leg (the cancer was found and so far is only located in the inguinal lymph nodes in my right groin, and it's causing lymphedema). I'm going to therapy but after 4 weeks it hasn't helped much. I'm hoping it'll reverse since I started treatment early on when I was still pitting, but I don't know. At the very least, I'm hoping the compression stockings will allow me to walk the parks. I really, really, really don't want to be in an ECV. It would be great to get suggestions from people who have been through it, and I know they are out there! Looking forward to coming back to this thread several times before November!

And best of luck and grace to all of us!

Lisa
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Old 12-27-2012, 11:02 AM   #5
weHEARTmickey
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Quote:
Originally Posted by Redwolf8812 View Post
Was wondering if anyone is interested in a thread like this - for patients and/or caregivers. We could share tips, commiserate, etc. I've been battling breast cancer since July 2010 and have enjoyed 3 trips to Disney World with my family since diagnosis. It has its ups and downs and I always enjoy seeing my family have fun. We live in Jersey and have always driven. Last time, we took the auto train home. I always wondered how others handle side effects of treatments while vacationing.

Penny
What a beautiful idea for a thread My Mom passed away from breast cancer in August 2010. We had taken her to WDW in 2008 (before her diagnosis) & those memories and pictures are precious to us! She was Stage IV when I took her whale watching, for her Bucket List trip. It was pretty difficult, because she went downhill very fast (while we were on the trip.) I did have to push her in a wheelchair most places, and her appetite was tiny. She slept quite a bit during the end of our trip.

Even though we weren't in Disney, I would like to give this one piece of advice... Do the MOST IMPORTANT thing first! If it is your wish to have a family picture in front of Cindy's Castle at MK, then go to MK on the 1st day! You never know when extreme fatigue/illness may strike, and it would be so sad if you'd "saved the best for last", only realizing that the patient was too tired/sick to attend. We had debated on visiting San Francisco at the beginning or end of our Monterey, CA whale watching trip. I am SO THANKFUL we chose to go whale watching on our first full day in CA, followed by San Fran, because Mom declined after seeing those whales. Prayers to all of you brave souls who are having to struggle through this horrible disease.
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Old 12-27-2012, 05:51 PM   #6
Redwolf8812
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Lisa - we're planning a trip in November as well. It's our favorite time of the year to go - the weather is pleasant, our teachers' convention is the week we go so the kids don't miss too much school, things are less expensive and less crowded. Of course we realize everything is subject to change due to health issues. In fact, the June 2011 trip had been rescheduled so many times I lost count. LOL. I see you live in the Philly suburbs. I live in South Jersey but am treated at UPenn. Where do you go for treatment?

We rented wheelchairs for me. The first time we just got them at each park but then we got smart and rented one off-property ahead of time and arranged for it to be delivered to our hotel the day of our arrival and picked up our day of departure. It was SO much easier and also less expensive. With the wheelchair, we were able to do so much more because I didn't tire out as fast. I walked when I felt up to it. There were enough family members that they took turns pushing me. No one minded - we had more fun since we didn't have to leave early on my account.

I don't have much experience with lymphedema at this point, but do you have to be careful with it if you fly? With driving, we stop every 2 hours because I have to stretch my legs - some chemos can cause blood clots so it's important to get the blood flowing. No big deal - we stop a lot anyway because someone always seems to need a bathroom break.

I try to avoid thinking of these trips as "my last one with my family". Otherwise I'd stress myself out trying to take pictures and making sure we do EVERYTHING. No one knows when their last vacation will be. I try to stay positive and talk about "the next time we come back". We try to stay relaxed about the whole thing. Planning the trips gives me something to look forward to.

Right now we have a room booked at Bay Lake Tower but would LOVE to try to get a treehouse. Either way, we'll have fun.

Penny
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Penny
1972 - 1984 many visits
1993 - Yacht Club, honeymoon, October
2001 - offsite, first visit with 2 kids, May
2002 - Fort Wilderness, October
2004 - Fort Wilderness, first visit with 3 kids, October - November, Food & Wine Festival, trick-or-treating in the campground
2006 - Fort Wilderness, October - November, Food & Wine Festival, trick-or-treating in the campground
2008 - Fort Wilderness, October - November, Food & Wine Festival, Mickey's Not So Scary Halloween Party, trick-or-treating in the campground
2011 - June - Old Key West & Bay Lake Tower, first visit as DVC owners after selling camper & truck, first visit post-cancer diagnosis (stage 3)
Easter 2012 - Animal Kingdom Kidani, first visit post-stage 4 cancer diagnosis
November 2012 - Boardwalk Villas
May 2013 - Treehouse Villas
December 2013 - Saratoga Springs
Reservation for 6/26-6/30/14 Saratoga Springs
next - it's all in God's Hands
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Old 12-27-2012, 06:38 PM   #7
lmc318
I have dreams like you, no really! Just much less touchy-feely. They mainly happen somewhere warm and sunny....
 
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Quote:
Originally Posted by Redwolf8812 View Post
Lisa - we're planning a trip in November as well. It's our favorite time of the year to go - the weather is pleasant, our teachers' convention is the week we go so the kids don't miss too much school, things are less expensive and less crowded. Of course we realize everything is subject to change due to health issues. In fact, the June 2011 trip had been rescheduled so many times I lost count. LOL. I see you live in the Philly suburbs. I live in South Jersey but am treated at UPenn. Where do you go for treatment?

I don't have much experience with lymphedema at this point, but do you have to be careful with it if you fly? With driving, we stop every 2 hours because I have to stretch my legs - some chemos can cause blood clots so it's important to get the blood flowing. No big deal - we stop a lot anyway because someone always seems to need a bathroom break.

Penny
Hi Penny - I hear November is an excellent time to go and I'm super excited! DH and I went in December 06 for our honeymoon, and then my entire family went in July 09 (I will never do summer again!!). DH, DD and I went in October 2011 and LOVED it. DD was 3 at the time and we splurged and stayed at the Poly. It was such a magical time and made it really hard to pick a resort this time. In November, we're going to stay at Wilderness Lodge. We decided the Christmas decorations at WL were too much to pass up. I thought about BW, but I have Celiac Disease (in addition to cancer, so it's a joy), and BW has limited food options for me. DD will be 5 when we go next and resort food is important as an option, so WL it is!

I'm being treated at Fox Chase Cancer Center, although I have a second opinion appointment at Penn in January. I'm happy with my treatment - the nodes have gone down each time since I started treatment end of July - but with unknown primary, second opinions are always good. It would be nice to know where this is coming from. They seem to think gastric, although the upper endoscopy showed no signs of cancer. I have no cancer in any organs that is visible to the naked eye or to CT/Pet scans. It's just in my lymphatic system and right now confined to the right groin. My pathology reports show CK7+ and CK20 focally +, so that is why they think upper GI. I guess they think gastric because with pancreatic, I'd be in much worse shape by now. I was kind of hoping for testicular, to be honest. Much higher cure rate. I don't think I'm eligible for that, though.

I'll have to wear a compression bandgage, probably for the rest of my life and yes, definately on the plane. Since I started treatment early and it's due to the cancer in my lymph nodes, we're hoping as the cancer goes down, the lymphoma will go down. Have to get it under control first, though. I've been doing therapy for 4 weeks and my calf is back down to normal size, but my foot and my thigh are not. I'm going to continue starting 1/7 at Grandview in Sellersville, PA, which is much closer to me. I'll be able to go more often for therapy there and hopefully get this under control. It is uncomfortable, to say the least. I'm supposed to be able to go about my business as usual with the bandages on, but it doesn't seem to be working well. They fall down all the time and I don't fit into normal clothes with them on and eventually I just feel like a pig in a blanket. The holidays were tough, to say the least.

I have a feeling I'll need to rent a wheelchair or ECV while I'm there, but I'm hoping not. During my cycle good weeks, I feel pretty good, but the more treatment I have, the more exhausted I get, so we'll see. I'm still praying for remission. If the lymphedema is under control by then, I'll be able to wear a compression stocking and keep the swelling under control. They have bigger ones for bed time. I hear they are awful, but whatever it takes to keep my leg a fairly normal size.

If you happen to be at Penn January 15th let me know and maybe we can meet up quick for a cup of coffee/water/quick hug.

Lisa
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Old 12-27-2012, 07:06 PM   #8
Redwolf8812
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OK, will let you know. The cancer is currently in my liver and I'm having an ablation on Monday morning. After that, I'm not sure what my treatment schedule will be. I just got done a clinical trial - the chemo was taxol and carboplatin, plus a pill that was either a placebo or a parp inhibitor. Parp inhibitors are for cancer patients whose cancer is genetic, like mine.

Ah, "remission", from your lips to God's ears!

Penny
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"The God of all grace who called you to his eternal glory through Christ [Jesus] will himself restore, confirm, strengthen, and establish you after you have suffered a little." (1 Peter 5:10)
Penny
1972 - 1984 many visits
1993 - Yacht Club, honeymoon, October
2001 - offsite, first visit with 2 kids, May
2002 - Fort Wilderness, October
2004 - Fort Wilderness, first visit with 3 kids, October - November, Food & Wine Festival, trick-or-treating in the campground
2006 - Fort Wilderness, October - November, Food & Wine Festival, trick-or-treating in the campground
2008 - Fort Wilderness, October - November, Food & Wine Festival, Mickey's Not So Scary Halloween Party, trick-or-treating in the campground
2011 - June - Old Key West & Bay Lake Tower, first visit as DVC owners after selling camper & truck, first visit post-cancer diagnosis (stage 3)
Easter 2012 - Animal Kingdom Kidani, first visit post-stage 4 cancer diagnosis
November 2012 - Boardwalk Villas
May 2013 - Treehouse Villas
December 2013 - Saratoga Springs
Reservation for 6/26-6/30/14 Saratoga Springs
next - it's all in God's Hands
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Old 12-29-2012, 02:50 PM   #9
lmc318
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Just wanted to share the great news! I had my CT yesterday following my latest round of chemo and as of now, I am disease free! I don't know how, but I won't question it! I consider myself very, very lucky since they found the cancer when it was isolated to my lymph nodes and had not spread to organs. I know it's not curable, but remission would be fantastic! So one more round of three and I get a break from treatment!

Of course, now I'm looking to celebrate while I can, especially since my birthday is in March, when I'd be done the round and have my next CT.

Just wanted to share the great news! Hope everyone is well!
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Old 12-29-2012, 03:07 PM   #10
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Just wanted to share the great news! I had my CT yesterday following my latest round of chemo and as of now, I am disease free!

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Old 12-29-2012, 03:11 PM   #11
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Dh is currently battling testicular cancer with metz to the lungs and brain (3x) He asked me to book a cruise for Oct.

I really hate Cancer!
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Old 12-30-2012, 12:55 AM   #12
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Thank God for your great news, Lisa!

Bitlerzx4 - hating cancer with you. I hope planning the cruise is a good distraction.

Hope everyone is having a happy and healthy Christmas season. As usual, the holidays came upon us too fast and are going by in a blur.

I'm so grateful to God for our faith. I know that I will face Judgment sooner then later, but I know that I will also be forever in the presence of the One Who Loves Me Most.

So Monday - the ablation is still scheduled for 9am. I think it'll take a couple of months to find out how successful it was, and in the meantime, I believe the oncologist wants me back on chemo. I've enjoyed these last few weeks without chemo and thank God for the nice break. But it's time to put the armor back on and get back into fighting mode.

- Penny
__________________
"The God of all grace who called you to his eternal glory through Christ [Jesus] will himself restore, confirm, strengthen, and establish you after you have suffered a little." (1 Peter 5:10)
Penny
1972 - 1984 many visits
1993 - Yacht Club, honeymoon, October
2001 - offsite, first visit with 2 kids, May
2002 - Fort Wilderness, October
2004 - Fort Wilderness, first visit with 3 kids, October - November, Food & Wine Festival, trick-or-treating in the campground
2006 - Fort Wilderness, October - November, Food & Wine Festival, trick-or-treating in the campground
2008 - Fort Wilderness, October - November, Food & Wine Festival, Mickey's Not So Scary Halloween Party, trick-or-treating in the campground
2011 - June - Old Key West & Bay Lake Tower, first visit as DVC owners after selling camper & truck, first visit post-cancer diagnosis (stage 3)
Easter 2012 - Animal Kingdom Kidani, first visit post-stage 4 cancer diagnosis
November 2012 - Boardwalk Villas
May 2013 - Treehouse Villas
December 2013 - Saratoga Springs
Reservation for 6/26-6/30/14 Saratoga Springs
next - it's all in God's Hands

Last edited by Redwolf8812; 12-30-2012 at 01:02 AM.
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Old 12-30-2012, 07:41 AM   #13
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I do hope it's okay to post this... An experience, an encouragement, a survivor story? You choose.
I wasn't aware that during my last Disney trip for my 50th birthday in September 2011, I had an undiagnosed bowel cancer. The tumour was found on 1st November and I had surgery on 5th December that year leaving me with a loop ileostomy.
I have been unbelievably lucky, the ileostomy was reversed in February, went back to work in March and was able to work right through 7 months of chemo.
Each time I went to the chemo ward, once every 3 weeks, I got reminded how lucky I was and told all of my friends and colleagues. There were many people suffering far more, better and far braver people than I.
I've been told that they think my cancer is all gone so I've booked a WDW trip in April to celebrate with my son and partner.

My thanks go to all of the medical teams, from my GP to the oncology dept and all points in between for saving, or at least extending my life.

I wish all sufferers and carers well, and wish you all the success in fighting it that I've had so far.
Whilst there are no certainties in life, dreams and wishes do help, and DIS and Disney have them in abundance.
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Old 12-30-2012, 08:42 AM   #14
lmc318
I have dreams like you, no really! Just much less touchy-feely. They mainly happen somewhere warm and sunny....
 
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Quote:
Originally Posted by bitlerzx4
Dh is currently battling testicular cancer with metz to the lungs and brain (3x) He asked me to book a cruise for Oct.

I really hate Cancer!
I'm so sorry to hear of your husband's diagnosis. Just tell him to keep thinking of Lance Armstrong while he's fighting, who also had mets to his lungs and brain. And look at him now! (Aside from the doping scandal, of course!). I think booking that cruise is the perfect motivation. It's the exact reason I planned a Nov 2013 trip when I started treatment. Please vent, cry, share joy with us as you feel up to it. As a caregiver, you're going to need support too. Find it where you can. Hugs to you!!!

Quote:
Originally Posted by Redwolf8812
Thank God for your great news, Lisa!

So Monday - the ablation is still scheduled for 9am. I think it'll take a couple of months to find out how successful it was, and in the meantime, I believe the oncologist wants me back on chemo. I've enjoyed these last few weeks without chemo and thank God for the nice break. But it's time to put the armor back on and get back into fighting mode.

- Penny
Penny, thank you! I wish you best of luck tomorrow and a speedy recovery. Keep us posted when you can. My thoughts will be with you.

GoofyGraham - great news!! Survivor stories are always encouraging to me, they help me fight harder. Have a great trip and enjoy it!!!
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Old 12-30-2012, 08:45 AM   #15
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I have dreams like you, no really! Just much less touchy-feely. They mainly happen somewhere warm and sunny....
 
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Quote:
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Thank you!!!!
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