Rare Disease Day

As you all already know the last day of the month of February is rare diseases day. Wait, no you didn't. I’m willing to bet that not one of you out there reading this knew that. Do you know that July is sarcoma awareness month? Or that pediatric cancer awareness month comes the month before pink october? No to both? I’m not surprised because one year ago…Neither did I.

As you already know I was diagnosed with a very rare form of bone cancer named Ewing’s Sarcoma. Over the past several months I have learned a lot about sarcoma, and pediatric cancer. Here are some statistics that I’d like to share with you. They may surprise you. I know I was shocked, and upset when I read some of these facts because my assumptions about these diseases were completely wrong.

Sarcoma Facts 

• There are over 50 types of sarcoma 
• At any one time there are approximately 50,000 people struggling with the disease. 
• Each year there are 14,000 people diagnosed with sarcoma, and 6,000 die from the disease making it one of the most aggressive cancers. 
• 1% of adult cancer diagnosis are sarcoma, and 20% of pediatric cancer diagnosis are sarcoma(mainly Rhabdomyosarcoma, Ewing’s Sarcoma, and Osteosarcoma).
• With early detection and aggressive treatment these cancers can be cured in 60-70% of patients, but a lot of the time sarcoma goes misdiagnosed for months
• Since 1995, there has been over 50 new drugs approved for the treatment of cancer by the FDA, but only one of those drugs is for the treatment of sarcoma. 
• The survival data over the last 20 years has been very stagnant 
• New methods of treatment are needed to increase patient survival rates. 

Sarcoma is extremely underfunded. How much? In dollar terms, the National Cancer Institute’s funding for sarcoma research is $38.9 million while funding for prostate cancer research is $265.1 million, and breast cancer is $602.7 million. I was unable to find specific funding numbers from the American Cancer Society website on sarcoma, but I did find that they only gives 2.96% of the money they raise for research to pediatric cancer, and 12%, and 7% to breast, and prostate cancer respectively. Sarcoma is likely to be much less than even 2.96% unfortunately. Why is the funding so little? National Cancer Institute, and American Cancer Society response: “Because it is rare.” My response to that: “That is not good enough of an excuse.” Soon you will see why.

Sarcoma’s nickname of “The Forgotten Cancer” is well deserved from the figures above. That’s a pretty large gap in funding isn’t it? It’s not even close. Two types of cancer with a much higher survival rate, and more advanced treatment get exponentially more funding than over 50 types of cancer put together. Seems pretty reasonable….NOT! 

Every year there are 250-300 people diagnosed with Ewing’s sarcoma. Let me explain to you something I have thought about every day since my diagnosis.

I don’t know how many cases of Ewing’s Sarcoma were made in 2013, but for the sake of simplicity let’s pretend that its an even 300. I have thought of these other 299 people as my class. With current treatment for Ewing’s sarcoma I’ll show you how many of us will make it to graduation while also giving you some information about the disease. At diagnosis 75% of us will have localized disease, with the remainder having metastatic(spread) disease. Typically all of us have at least microscopic spreading though. This is because this cancer has an 80-90% recurrence rate when only treated with surgery. It must be treated with systemic chemotherapy to kill the microscopic spreading along with surgery and/or radiation. All 300 of us have the same first line treatment. I’m lucky to be part of the 225 people with localized cancer. We have around a 70-75% chance of beating the disease, while the people with metastatic disease at diagnosis have less than a 30% of being cured. So when it comes graduation time only 190 of us will be there to celebrate. The 190 of us that make it will not be finished though. The treatment for this disease is very harsh, and aggressive, which leaves us at a much higher risk for late side effects from treatment such as infertility, organ damage, and secondary cancers. This is unacceptable because most of us are just kids when we’re diagnosed, and will live for a long time if we survive. These risks, and the fact that only 2 out of 3 of us will survive the cancer are exactly why treatment needs to improve. The average years of life lost from those 110 people is 62. 62 years! The average years of life lost from someone who dies from all types of cancer is 15 years. Remind me why we’re not getting any funding again? Is it because our disease is rare or is it because you’d rather give some old person 15 extra years of life who has already experienced most of what life has to offer at the expense of us who haven't. I hope its not the latter.

Just because our disease is rare doesn’t mean that we don’t exist. It’s true that Ewing’s sarcoma is a very rare cancer, but we are also a part of a much larger group of people. The 300 of us diagnosed in 2013 are a part of the 50,000 people currently fighting various types of sarcoma. And those 50,000 people are a part of an even larger group of people. People fighting rare diseases. Doesn’t sound too rare now does it?

If you would like to donate money to sarcoma or pediatric cancer I suggest donating to these organizations below. These organizations donate all of their funds towards sarcoma, and pediatric cancer unlike other organizations.

• http://www.curesarcoma.org
• http://miles2give.org
• http://www.stbaldricks.org
• https://shop.stjude.org/GiftCatalog/donation.do?cID=14262&pID=24671
• http://www.alexslemonade.org
• http://sarcomahelp.org

I wish all 300 of us could survive the cancer, but until there is change it will never happen. Survival rates will remain stagnant until we get more funding. More funding creates more clinical trials which eventually leads to new drug approvals, and thus improved treatment, and survival rates.  Small nonprofit organizations cannot do it on their own. There is too much of a gap in funding. Until that day comes we must donate to these small organizations, and get the word out about these “rare” diseases to create awareness.

Please share this post. It’s all that I ask of you to do. The word needs to get out.

Sources

• http://www.cancer.gov/researchandfunding/snapshots/
• http://sarcomaalliance.org/what-you-need-to-know/
• http://curechildhoodcancer.ning.com/page/childhood-cancer-1
• http://www.uptodate.com/contents/treatment-of-the-ewing-sarcoma-family-of-tumors
• http://www.onclive.com/web-exclusives/Pazopanib-Receives-FDA-Approval-for-Treatment-of-Soft-Tissue-Sarcoma
• http://childhoodcancer-mccaul.house.gov/issue/all/related-news?page=1

Rough Week

Since my last post I have had one major complication occur due to treatment. Hemorrhagic cystitis. Well what's that? It's bleeding of the bladder, and it's easily the most painful, and bothersome side effect that I have gotten from my treatment. It started on Friday morning when I noticed that it was painful to urinate. This was new to me because usually during my B treatment weeks I pee in morse code by Wednesday(Grown ups reference), but it would never get any worse than that. Especially not painful. This couldn't be good. I told my oncologist about it, and he increased my Mesna dosage to protect my bladder, and said if it gets any worse then he would cancel my ifosfamide chemo drug on Monday.

On Saturday it was more painful, and also more frequent. It's now Thursday as I'm writing this, and the longest time I have had in between peeing is an hour and a half and that was today. That includes nights too. Average time is 15-20 minutes during the day, and 30-60 minutes at night.

On Sunday it got even worse. It was just as frequent as before, but much more painful. Like so painful that my eyes would tear up every single time I used the bathroom. It also burned. As weird as this sounds, I started to stand on my tippy toes while I urinated, and it was the only way I could go with all of the pain I had. I guess my focus on balancing my body is what helped me focus on that instead of the pain. And to top it all off I was now peeing blood. I called up my oncologist, and he canceled my ifosfamide chemo, but scheduled me to receive extra mesna on Tuesday through Thursday of this week with some hydration. The unfortunate thing about hemorrhagic cystitis is that it is so much easier to prevent than treat. This is going to take weeks to heal completely. Also on Sunday it was much more urgent. When I would have to go, I would have to sprint to the bathroom sometimes(and that's no exaggeration folks). At one point I just sat on the toilet for over an hour because it was the most comfortable place for me. My treatment was in the city on Monday at 8 am so we booked a hotel for the night so we wouldn't have to get up at 4 in the morning.

On Monday I got pills that help with the discomfort, and they help a lot. I was taking my leftover diuladid from surgery, but they weren't helping much. I was still peeing blood, but at least I wasn't in as much pain. The Pyridium pills really help take the edge off.

Tuesday was about the same as Monday.

Wednesday I was a little bit better with the pain, but everything else was the same. The burning was gone. By this day I was just so tired though. It's been 2 weeks in a row of treatment with not even close to enough sleep.

Today. Pain is a lot less than yesterday. I would say it's about as painful as it was on Saturday. There is still blood, and it is frequent, but not urgent. Today was my first comfortable car ride in a week. It's a good thing too because I plan on going to Joey's eighth grade night basketball game tonight.


My take on this week: This week really sucked. There is really no way I can look at the past week, and not be upset about it. Missing out on the chemo on Monday isn't too big of a deal, but I hope my symptoms keep improving so I won't miss out on any more doses or my schedule gets pushed back. That would be a problem. There are three things that can cause hemorrhagic cystitis. Cyclophosfamide, Ifosfamide, and radiation. I receive cyclofosfamide on my A treatment, and I get that next on Wednesday next week. This needs to keep healing up. I think this complication really proves how toxic these drugs really are, and how much more my body can take of these chemicals(not much). At least I'm nearing the end. I don't plan on the next cycle being any easier than this one, but I'd like to be surprised. As a whole, treatment has been so much more difficult in this second half of chemo than my first three cycles. I'm planning on the bone pain again because my counts are mirroring my last cycle perfectly. That should happen on Sunday or Monday.

There is going to be a different type of post on here in the next couple of days. Be ready for it.

Cycle 5B, and St. Jude's

Right now I'm in Radnor stuck in a hotel with a crazy snowstorm brewing outside. This storm is crazy. We already got 10 inches! Chemo was cancelled today due to the storm, and I'll be back for day 4 tomorrow. Day 5 will be Monday. Good thing the hotel is located right up the street from clinic. Tomorrow I'll find out how this storm will affect my next cycle. I'm thinking that my next cycle will be moved to next Wednesday because of my shots which would run until next Monday. 

So far I've been pretty good this week. This week has definitely been easier than the last B week. It's a shame that we got this storm though. I was only two days away from finishing the cycle, but now I'm so far away. I don't feel like I'm getting anything out of this day off, and then I'll have the same thing over the weekend only to get a day of chemo on Monday. I hope my next cycle is moved from Monday until Wednesday because I don't think I'll be ready for it on Monday. 

A special thanks goes to St. Jude's school, my grade school for holding a benefit for me. My family and I really appreciate all that you have done. I would also like to thank my old basketball coach Mr. Kempinski, and Mrs. Wills for organizing the event and for all of the wonderful things they said during the basketball game.

Hopefully this post made sense. I'm really tired, and I'm going to sleep now.

I Love the Shirt

Rest Week

Short update:

Last week was a great week for me. I got to go out and do a lot, and it was very enjoyable. This week has been more of a rest week for me. The only exciting things I did this week were to pick up my glasses yesterday, and blood work on Thursday. Sounds really fun doesn't it? Not really, but in all seriousness I really needed to just rest this week. If there is one thing that I have done well so far in this cancer treatment its to listen to my body. I push myself a little bit from time to time, like last week, but mostly I haven't. My blood counts, and overall health during this has been really good so far. Some of that success is due to luck, but I have done everything right and that definitely helps.

Sunday was the last day that I really did much. I went to my brother's basketball game. I'm still a bad luck charm though. Maybe this Sunday they'll get a win when I see them play. No pressure guys....just kidding. Looking forward to the game. It looks like were not getting much snow Sunday so that's good. We already got enough this week. I really wish I could have went outside and played in the snow. I love the snow.

Now let's get to the cancer treatment. As far as side effects from treatment go. The only new thing is my mouth. I have no mouth sores, but the inside of my mouth is now back to how it was during my first three cycles. It's all pale and dead looking, especially my tongue. Gross! In the morning the skin in my mouth feels really tight, and dry. Like so tight that I can't stick my tongue out. I think if I tried to I would tear the skin under my tongue. The biotene helps a little bit. It gets better as the day goes on, but it is always the same in the morning. I feel pretty good right now. I have more energy now than I did last week.

My 5th B treatment is next week. Hopefully there's no snowstorms, or I'll be staying down there. Please keep me in your prayers next week. The last B week that I had was a really rough experience, and I hope this time is much better.

Also keep all of the other people battling cancer, and other illnesses in your prayers.