Doing Disney with Stage 4 Cancer

[Redwolf8812]

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

 

[LarryFmScotland]

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.

 

[Pats Dragon]

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.

 

[lmc318]

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

 

[weHEARTmickey]

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.

 

[Redwolf8812]

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

 

[lmc318]

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

 

[Redwolf8812]

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

 

[lmc318]

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!

 

[Kellykins1218]

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!

 

[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!

 

[Redwolf8812]

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

 

[GoofyGraham]

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.

 

[lmc318]

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!!!

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!!!

 

[lmc318]

Thank you!!!!

 

[PatsMom]

This thread is the first time I've come across someone else with an unknown primary! Of course, its only been a few weeks since I was diagnosed with that! I have been battling bladder cancer since 2010 but was staged at T1, but high grade. So I had follow up chemo after tumor removal from the bladder. All the protocols were followed - a second staging was completed just to verify no muscle invasion. All looked good. I have had one bladder cancer recurrence which is quite common - staged at T0 but that was just through observation, not biopsy. They fulgurated the tumor (burned it out) right in the doctor's office. Seemed like the quickest way to get it done at that time and no reason to think it was anything other than a recurrence. Bladder cancer has a terrible recurrence rate.

A few weeks later I had terrible abdominal pain. Finally went to see my primary care who ordered an emergency CT scan. She was thinking pancreatitis from my diabetes medication or possibly gall bladder. What they found were para-aortic lymph nodes so enlarged they were causing pain by pressing on the aorta. At this point, most assumed a lymphoma. At about the same time the inguinal lymph nodes became inflamed and a biopsy was done from the left inguinal lymph node. It did not confirm lymphoma and was so poorly differentiated that they could not tell where it had metatastized from. There was speculation that it was gynecological.

So off I went to the gyn oncologist, who is excellent! Very good credentials and highly recommended. He did all of his tests and exams and didn't see any proof that it was ovarian or uterine. But after much discussion among oncologists and urologists it was decided that they should definitely rule out gyn cancers before deciding on a chemo. So this week they removed the uterus, fallopian tubes and ovaries. I came home to recover yesterday. The gyn onc things bladder cancer is the root, uro thinks gyn. They took lymph nodes from the belly hoping to get more information from those as well. We'll get the pathology report next Friday.

I am going to Disney next Sunday, two days after the pathology report! And I guess this is at least stage 3 at this point. Maybe not four yet since they don't see it in my bones and the MRI of my brain isn't back yet. Not my first Disney cancer trip though. I've been several times during bladder cancer treatment. Took care to avoid close contact where possible, washed my hands a lot and had no issues. Last May had a wheelchair trip because of a broken foot but my chemo wasn't that brutal for bladder cancer and I was able to do all my usual stuff.

This trip will be different. Doctor is OK with the three hour flight but definitely no Tower of Terror for me this trip! Avoiding all the coasters and jerky rides. We have a wheel chair from the last trip and are taking it. Thought about an ECV but I will be alternating walking and riding. I need to walk some, but not ten miles a day! We thought about cancelling but this is a big family trip we have been planning for a while. My step-daughter and five year old grandson are going with us. His first trip. And we decided to take my niece so he would have another young chld to enjoy the trip with. My 21 year old daughter is going too. Hard to get six schedules to agree! And the kids have already arranged to be out of school. So we are going and we figure we will have a good time even with my limited mobility. I won't start chemo until we return so that will help with the exhaustion. Surgical recovery is bad enough. Not to mention that there is really nothing they can do for pain but medicate me with narcotics. Pain won't get better until they can treat the cancer.

To all who are on this journey either on their own or with a loved one, you are on my prayer list automatically!

 

[lmc318]

This thread is the first time I've come across someone else with an unknown primary!

OMG SHUT UP! They say unknown primary isn't all that rare, but as you know from experience, we are few and far between! You are only the second person I've "known" with CUP (never having officially met anyone face to face with it). I don't know how much research you've done on it, but having it only in the lymph nodes is a BIG plus. It's one of the good markers for treatment. The other woman I know with it is being treated for pancreatic. She has all the signs of it without an actual tumor. Not good. Pancreatic was my biggest fear. My pathology reports point to upper GI in origin. I'm 42 years old with a 4 year old. I have a lot to live for, as we all do. Anyway, through biologic testing, they basically ruled out pancreatic. I had an ovary and tube removed and a D&C and there was no cancer anywhere but my right inguinal nodes and the retroperitoneal nodes. After the first round of chemo, everything had gone down. After the second round, the report says disease free. They are treating me for gastric cancer and I'm on carboplatin, docetaxol, and 5-FU. I started on cisplatin instead of carboplatin but I was so sick for 2 of 3 weeks between treatments that they switched me. The carboplatin doesn't make you as nauseous. I was afraid it wouldn't be as effective, but clearly it is!

They looked at me for bladder cancer as well. They thought the original pathology showed bladder or gyn, but that doesn't seem to be it. Although I had an upper endoscopy as well and it was negative. I hope they find the origin for you, but just in case, I would have the biological testing done. They can find out what kinds of treatment you'll best react to. Mine showed my current treatment to be the best, so I guess my docs know what they are doing! The report also gave some good options if and when I start to reject the current therapy.

I was out for a good 2 weeks after my ovary and tube were removed, so more power to you for going so soon after your surgery!!! Have a great time!

 

[Redwolf8812]

Goofygraham - so inspiring! Thanks for joining us.

Patsmom - praying right along with you. Please keep us posted on that path report.

Hope to post tomorrow night after the ablation.

- Penny

 

[Redwolf8812]

Goofygraham - so inspiring! Thanks for joining us.

Patsmom - praying right along with you. Please keep us posted on that path report.

Hope to post tomorrow night after the ablation.

- Penny

 

[MdMommy]

Hi! I was diagnosed with metastatic breast cancer (stage IV) in Sept. 2008. This was 5 years after I was diagnosed with my primary breast cancer. I went to WDW in 2009 before I started chemo (was on Femara then Faslodex before chemo) which was pretty much like any other trips I had taken. I went again in 2010 after a year on chemo (Taxol & Avastin). Had to rent an ECV that trip due to fatigue, but still managed fairly well. I am planning my next trip for July 2013. After several years battling the cancer and undergoing chemo, I don't get around as well and suffer not only from fatigue but also from shortness of breath and pain. I will be renting an ECV again. This trip will be a little different. My mets first appeared in my lungs, but now are also in my liver and some of my bones. Due to the risk of fracture, I will need to skip any jarring roller coasters this trip. I will just send my 2 teenage daughters on those rides without me. Hopefully, my condition doesn't worsen much between now and the summer. I have my next PET/CT scan sometime in January and we will see if the current chemo (oral Xeloda) is working or if we need to change. But, I will keep planning for the trip and will adjust what I am able to do if necessary. I love going to WDW and making memories for my daughters.