November! My birthday month & Pancreatic Cancer Awareness Month

Here we are again! Fortunately, I'm here to see another birthday! Who would have thought, when I was diagnosed, I would see 50!?!?!? Much less, 51. Not sure how many I'll get to since I now have a recurrence. The good news is: my cancer is stable & has been since February. However, if you know how aggressive this cancer is, it could all change on a dime.

For the month of November, I'm going to be BRUTALLY honest about the type of pancreatic cancer I was diagnosed with & the other pancreatic cancer, as well as other cancers. We'll take a look at survival rates, awareness, drugs from "Big Pharma" and the amount of research funds invested into pancreatic ductal adenocarcinoma vs other cancers. I believe you'll be shocked.

Also, I'm going to share with you the projected growth of pancreatic ductal adenocarcinoma over the next 5 years. It may frighten you, but it should frighten you! It is the ONLY major cancer that is on the rise & is projected to become the #2 cancer killer in the USA, surpassing BOTH Colon AND Breast Cancer. Women, Moms, Aunts, Sisters, Grandmothers & friends need to be VERY afraid! It is coming upon a time when women will be DYING from Pancreatic Cancer rather than Breast Cancer...AND THERE IS NO EARLY DETECTION TEST! The majority of patients are diagnosed at Stage IV. The median survival time is ONLY 5 months. Who will it be? You? Your Mom? Your Sister? Your best friend? Your favorite Aunt? It's coming, but I seem to be in a small group of people who is taking this seriously. Why aren't you?

So when your GYN talks to you about BRCA 1 & 2, keep in mind, IF you have a mutation to these genes, you ARE AT GREATER RISK FOR PANCREATIC CANCER. I'll dive into this in a future blog.

First, I want to distinguish between the 2 primary types of Pancreatic Cancer. They are: Pancreatic Ductal Adenocarcinoma. It is very aggressive & accounts for 95% of all cases and is considered the "deadliest" cancer. This is what Patrick Swayze died from. The other type of Pancreatic Cancer is: Pancreatic Neuroendocrine Tumors. These tumors are generally less aggressive & slower growing. This is the type of Pancreatic Cancer-pNETs, that Steve Jobs died from.

Now I'm going to show you the 5 year survival rates for BOTH of the pancreatic cancers, as well as the 5 year survival for the other top cancer killers in the US. All of which are on the decline, except for Pancreatic Cancer.

For Pancreatic Ductal Adenocarcinoma: (#4 Cancer Killer and on the rise.Projected to be
                                            the #2 Cancer Killer by 2015)

Stage IA: 14%
Stage IB: 12%
Stage IIA: 7%
Stage IIB: 5%
Stage III:   3%
Stage IV:   1%
Overall:     6%

For Pancreatic Neuroendocrine Tumors:

Stage I:   61%
Stage II:  52%
Stage III: 41%
Stage IV: 16%
Overall:  42%

NIH funding for Pancreatic Cancer research for FY2013: $102 Million

For Lung Cancer: (#1 Cancer and on the decline)

Stage IA:  49%
Stage IB:  45%
Stage IIA: 30%
Stage IIB: 31%
Stage IIIA: 14%
Stage IIIB:  5%
Stage IV:    1%
Overall:    16%

NIH funding for Lung Cancer research for FY2013: $286 Million 

For Colon Cancer: (#2 Cancer and on the decline)

Stage I:      74%
Stage IIA:  67%
Stage IIB:  59%
Stage IIC:  37%
Stage IIIA: 73%*
Stage IIIB:  46%*
Stage IIIC:  28%
Stage IV:       6%
Overall:       65%
*In this study, survival was better for some stage III cancers than for some stage II cancers. The reasons for this are not clear.

For Rectal Cancer: 

Stage I:     74%
Stage IIA:  65%
Stage IIB:  52%
Stage IIC:  32%
Stage IIIA: 74%*
Stage IIIB: 45%*
Stage IIIC: 33%
Stage IV:     6%
Overall:      62%
*In this study, survival was better for some stage III cancers than some stage II cancers.
The reasons for this are not clear.

NIH Funding for colon/rectum cancer research FY2013: $238 Million

For Breast Cancer: (Currently #3 Cancer, on the decline and equal in deaths to Pancreatic                
                           Cancer)

Stage 0:  100%
Stage I:   100%
Stage II:    93%
Stage III:   72%
Stage IV:   22%
Overall:     89%

NIH Funding for Breast Cancer for FY2013: $559 Million

For Prostate Cancer: (Currently #5 Cancer and on the decline in deaths)

Stage I:  100%
Stage IIA: 99%
Stage IIB: 99%
Stage III: 99%
Stage IV: 29%
Overall 5 year survival: 100%
Overall 10 year survival: 99%
Overall 15 year survival: 94%

NIH Funding for Prostate Cancer for FY2013: $256 Million

So, based on these numbers, I believe we can DEMAND Senators Mitch McConnel & Rand Paul to do away with NIH funding for Prostate Cancer and put that money toward the cancers that are KILLERS: Pancreatic & Lung Cancer! 

Don't get me wrong! All cancer is bad, but there are definitely ones that are much more deadly than others! Isn't it time to reallocate the funds to the cancers that really need it and have not had survival statistics improve in over 40 years? Hell, that was when you had to use a telephone booth with a DIME!! 

I'M MAD AS HELL AND I'M NOT TAKING IT ANYMORE!!! I'M TIRED OF SEEING MOM AFTER MOM AFTER MOM LOSE THE BATTLE WITH PANCREATIC CANCER! 

Everyone in this country should be very afraid and demanding that more money go to Pancreatic Cancer. Who knows, it may be your Mom, sister, wife, Aunt or cousin that is next. It is growing that fast! 

Adenocarcinoma

You may be asking yourself, "Adenocarcinoma? What's that?" Well, my friend, THAT is the TYPE of pancreatic cancer that I have. Yes, there is more than one. I just happened to be diagnosed with the one that 95% of patients are diagnosed with. The one that is considered the most "lethal" of all cancers. So, don't be surprised if after you tell me, "I know someone who had pancreatic cancer and they're still alive after ________ blank number of years! You can beat this, too!!" I then ask you, "Did they have adenocarcinoma or Neuroendocrine?" There IS a difference!! Patrick Swayze had adenocarcinoma. Steve Jobs had neuroendocrine. One is rapidly growing (adenocarcinoma) & usually deadly within a year and one is slow growing (neuroendocrine) and, unless you're diagnosed at stage 4, usually has better outcomes than adenocarcinoma.

Adenocarcinoma, stage 2B...that is MY diagnosis. I am now stage 2B recurrent adenocarcinoma. I am NOT stage 4 and NEVER will be because I was not initially diagnosed with stage 4.
Another lesson in cancer I have learned. You ARE what your initial diagnosis is. Now IF my cancer had metastasized, I would be: Stage 2B with metastasis to (fill in the blank to whatever organ it has spread). Now you know WHY I will never be stage 4.

I did receive good news today. You see, with adenocarcinoma, there is a tumor marker they measure in the blood. It's called CA19-9. Normal range is 0-37. Pre-Whipple, I was 270. Post-op I was down to 15!! Sadly, with the recurrence of the cancer in my lymph node, it rose to 632!! Fortunately, going to a top notch cancer center & having one of the best medical oncologists in the country for pancreatic cancer, I am responding to the chemo in the clinical trial. Not that it has been a cake walk. It has not. Folfox is rough! GI symptoms and neuropathy in my hands & feet?!?! No bueno!! But, I am still here and am improving. How do I know? That crazy CA19-9 and my CT scans! My latest CA19-9 is down to 93!! So, I'm getting closer to 37!! Hopefully, within the next few months, they will declare me NED (No Evidence of Disease) and I will be off of chemo!!

Next blog...cyber stalkers and what you can do when dealing with a psychopath that has been released from jail.

Until then...much love to all!!

Wow! Was that some break from my blog!

I'm so sorry for not keeping you up to date!! I've been busy, LIVING!!
I've also seen a couple of my fellow pancreatic princesses pass, which was extremely difficult! They both were diagnosed with the same cancer & the same stage. God bless their souls!

I'll compose a "real" post tomorrow about what has been going on in the world of the Pancreatic Cancer Princess, tomorrow.

For now, I'm living & working, like a normal week. No chemo this week. :)

Blog pause

Sorry about the "blog pause". I've had some challenges I've had to deal with over the last couple of months and my blog was put on the shelf for awhile.

Tomorrow I'll be spending the day at the hospital. However, this time it's not me! My 82 year old Father is having his aortic valve replaced. Please say a prayer for him. I know he is in God's hands and also in the hands of an excellent surgeon. Whatever His will, will be.

So, while I'm at the hospital tomorrow, I believe I will dive back into my blog. I'm even going to go so far as to rededicate myself to my blog. You ask, "Well Alyson, how are you going to do that?" Here's how: I'm going to commit 30-45 minutes a day & put it on my calendar. Silencing my phone and focusing on my thoughts, feelings and ideas I'm having. I've been told by many of my friends I need to "get back to my blog or journal my journey on a daily basis." They've even gone so far as to encourage me to help others with an insiders view of Pancreatic Cancer. I believe it's very fitting that I'm doing this the week of our biggest Holiday, as a Christian.

One final thought for today. What would you all like for me to talk about?

Stay tuned...same bat time, same bat channel ;)

How Do I Stay So Positive?

That was a question I was asked recently.  I suppose there would be many who wouldn't be optimistic. I understand that. First, I was diagnosed with what is called, "the most lethal" cancer on the planet. I underwent the most invasive surgical procedure, the Whipple, & completed 6 months of chemotherapy. Fully believing that I would NOT have to face pancreatic cancer again. My Oncologist was so sure that I had beaten it also that he suggested I get my port removed within weeks of finishing chemo.

Unfortunately, that wasn't the end of my journey. I love the quote, "Man plans, God laughs."
It's NOT my plan, it's God's plan. The cancer has returned & I am undergoing chemotherapy, again. Fortunately, I am in a clinical trial and in a short amount of time, I am responding well to treatment and the tumors are shrinking. Yet again, I am breezing through without the need of Neupogen/Neulasta, NOR have I needed a transfusion. Friends jokingly call me, "Wonder Woman." I'm not sure about that, but I am certainly blessed.

Back to staying positive. Do I always? No. I have my down times, but the majority of the time, I am reminded of all the blessings in my life. IF I do not succeed in this battle, I will still have won! I believe the biggest reason I remain positive is that at the age of 3, my parents were burying my older sister. She was only 5 and a half. She died as the result of an auto accident in Corbin, KY. She was with a family friend who survived, but lost her son in the accident. Then at 20, one of my best friends died as the result of an aviation accident. She was beautiful! She was also a very talented singer who knew exactly WHAT she wanted in life. So, you see, I have lived a great life and have experienced so much more than my sister & my beautiful friend. Yes, I want more years to see my son graduate from college, marry and have children. Will I be here? I believe so. I have a great Oncologist who is a top researcher in the field of Pancreatic Cancer. However, IF I'm not, I've been blessed with 30 more years than my friend & 45 more than my sister. I've been married, divorced and privileged to be the Mom to a great young man. That ALONE is something I'm sure my sister & my friend would both have been great at...being a Mom.

So, when I start to get depressed, I look at my son and I thank God for each day. Because no one is guaranteed a tomorrow.

Man plans, God laughs.

TB2G for another day.