Larry decided to go with Dr. Adess at North Shore University. Larry made a decision to try the 4 drug chemo cocktail, Fofirinox. He will be starting chemotherapy on July 9th. I will be staying and driving him to Highland Park Hospital where he will be getting his 6 hour chemo cocktail on Mondays. Larry Kyo has agreed to split the day with me after a few weeks and Laura will also in August. Larry will then go home with 5FU chemo attached to him via a fanny bag. He will have that disconnected on Wednesdays in Glenview. This will hopefully allow him to finish his Wed/Thurs summer school classes. The chemo regimen is every two weeks.
This schedule will change in August when he returns to teach one class. Loyola is working with him so that he can continue to teach. His MWF class can also be handled online if he needs to. Of course he says he wants his students to get their moneys worth and will do everything he can to be in class. If need be, Larry Kyo and I will take turns driving him to school and wait around until he is done and then drive him back home.
Larry is still feeling good. Running and lifting weights. This will change after this Monday, July 2nd because he will have a port placed in his chest and will no longer be able to lift weights. He is planning on continuing to run for as long as his body will let him. Go Larry!
He is now attempting to follow the Foods that Heal and Diet that I have written about. It is very difficult for him since he is going cold turkey on sugar and junk food. He keeps telling me that he can't possibly eat like me all at once.
We are trying to talk, think and be surrounded with HOPE. This is not always easy but we are doing the best we can.
Saturday, June 30, 2012
Finances
6/27/12
One of the things Larry is keeping busy with is making sure that his family is provided for and everything is in order. I of course don't even want to talk about it. Yet it is so important to him, that I do.
Went to Loyola today to speak and meet the Benefits Advisor. She will be my contact later. As most have said, she could not believe that Larry was that sick.
I will have to be very frugal but I will be ok financially. Probably will not be able to afford the house. The scariest part is health insurance. Loyola has a generous Cobra plan for 3 years. After that, I will not be able to get health insurance that I can afford and does not have any waivers. Hoping that the Health Care Plan in Washington gets passed by the Supreme Court.
We had discussed recently of dropping some of his life insurance because of the cost. I thought we could drop it but Larry felt we should hang on to it. I actually always told him to insure me the most because of all my health problems. He did not listen to me and I will be forever grateful to him.
How unfair is it that he has worked since he was 16, has this good retirement package and now will not get to use any of it? I cannot even put words to how much this hurts me.
Month of June, 2012 Part 2
6/14/12
This time we see an Oncologist at LGH. We liked him but neither of us were impressed with the chemo regimen. He was using the 15 year old Gemzar with 5FU. He also only believed that the port should be placed in the arm not the chest. I questioned as to the reason being blood clots forming because of the Gemzar but he would not contribute the clots from the drug. I had read that Gemzar is known for blood clots. He was a No.
6/15/12
Appt with Oncologist at North Shore University Health Systems. This is where I went for my surgery and treatment. He is using the Folfirinox cocktail. He is young and spent almost 2 hours with us detailing all alternatives that can be found across the country. His nurse came back with a printout detailing all the drugs that would be used and side effects. We also received names of nurses with contact numbers and the Dr's home phone number and cell number. We were disappointed to learn that he is only in Glenview one day a week and practices mainly at Highland Park Hospital. This would mean a 30 minute drive for the chemo treatments. However, we really liked him.
Went to the Chicago Botanical Gardens after to visit one of your favorite places. Everything is so hard. We tried to enjoy ourselves but when we got back to the parking lot we both cried and discovered it was for the same reason. All we saw were older couples together. Knowing that we would never experience that was heartbreaking.
6/17/12
Fathers Day and my son's 23rd Birthday. We went out to lunch because Larry Kyo had to work. Spent the rest of the day taking a walk, sitting outside and trying to be happy. We all want to be hopeful and believe that he will still be here for next Fathers Day.
6/20/12
We had a 2pm appt with a Dr from Northwestern University Hospital that everyone said I would not get Larry into to see. After waiting 3 hrs for him, he confirmed what we thought. He wanted Larry in his Phase 1 clinical trials. Teaching hospitals are wonderful and that is where the research is but NW is downtown and would take us a long time to get to. Also, how long would we have to wait each time because of the large volume of people they see? Even though he is suppose to be one of the top Dr's for pancreatic, he was not offering anything different except for the trial. This was a No.
6/21/12
Loyola was last on our list of consults. After a 45 minute drive at noon time, we decided that we could travel that distance if this was the place. We liked the Dr. The information about treatment was the same. No new news. The main advantage is that we would receive 90% insurance coverage versus the 80% elsewhere. This was a possibility.
Was it worth having all the consults? Yes, we wanted to make sure that we were choosing someplace that we both would be comfortable with the Dr and staff. Communication is always so difficult and complicates everything during difficult times. I need to know that if I call, I will receive a return call asap. I also need to know that Larry will be given the latest treatment and be provided with the best care.
6/25/12
We started couples counseling at the Cancer Wellness Center. It was painful but a good session. We already knew her because we saw her with my cancer. I feel that counseling can be very helpful going through this process.
6/26/12
Our Birthday's! We have always loved waking up and singing Happy Birthday in bed to each other. Larry turned 57 and being the older one, I am 58. Each year he does not forget to remind me of it!
We want to be hopeful that we will be waking up and singing to each other in 2013.
6/29/12
Today we began family counseling at the Cancer Wellness Center. We needed to use a different counselor so that Larry Kyo and Laura would have their own contact if needed. I cried through the entire session, sorry kids. There are so many elements of difficulty but this one is brutal in knowing that Larry will be missing so many important parts of our kids lives. It is brutal for us and for them.
This time we see an Oncologist at LGH. We liked him but neither of us were impressed with the chemo regimen. He was using the 15 year old Gemzar with 5FU. He also only believed that the port should be placed in the arm not the chest. I questioned as to the reason being blood clots forming because of the Gemzar but he would not contribute the clots from the drug. I had read that Gemzar is known for blood clots. He was a No.
6/15/12
Appt with Oncologist at North Shore University Health Systems. This is where I went for my surgery and treatment. He is using the Folfirinox cocktail. He is young and spent almost 2 hours with us detailing all alternatives that can be found across the country. His nurse came back with a printout detailing all the drugs that would be used and side effects. We also received names of nurses with contact numbers and the Dr's home phone number and cell number. We were disappointed to learn that he is only in Glenview one day a week and practices mainly at Highland Park Hospital. This would mean a 30 minute drive for the chemo treatments. However, we really liked him.
Went to the Chicago Botanical Gardens after to visit one of your favorite places. Everything is so hard. We tried to enjoy ourselves but when we got back to the parking lot we both cried and discovered it was for the same reason. All we saw were older couples together. Knowing that we would never experience that was heartbreaking.
6/17/12
Fathers Day and my son's 23rd Birthday. We went out to lunch because Larry Kyo had to work. Spent the rest of the day taking a walk, sitting outside and trying to be happy. We all want to be hopeful and believe that he will still be here for next Fathers Day.
6/20/12
We had a 2pm appt with a Dr from Northwestern University Hospital that everyone said I would not get Larry into to see. After waiting 3 hrs for him, he confirmed what we thought. He wanted Larry in his Phase 1 clinical trials. Teaching hospitals are wonderful and that is where the research is but NW is downtown and would take us a long time to get to. Also, how long would we have to wait each time because of the large volume of people they see? Even though he is suppose to be one of the top Dr's for pancreatic, he was not offering anything different except for the trial. This was a No.
6/21/12
Loyola was last on our list of consults. After a 45 minute drive at noon time, we decided that we could travel that distance if this was the place. We liked the Dr. The information about treatment was the same. No new news. The main advantage is that we would receive 90% insurance coverage versus the 80% elsewhere. This was a possibility.
Was it worth having all the consults? Yes, we wanted to make sure that we were choosing someplace that we both would be comfortable with the Dr and staff. Communication is always so difficult and complicates everything during difficult times. I need to know that if I call, I will receive a return call asap. I also need to know that Larry will be given the latest treatment and be provided with the best care.
6/25/12
We started couples counseling at the Cancer Wellness Center. It was painful but a good session. We already knew her because we saw her with my cancer. I feel that counseling can be very helpful going through this process.
6/26/12
Our Birthday's! We have always loved waking up and singing Happy Birthday in bed to each other. Larry turned 57 and being the older one, I am 58. Each year he does not forget to remind me of it!
We want to be hopeful that we will be waking up and singing to each other in 2013.
6/29/12
Today we began family counseling at the Cancer Wellness Center. We needed to use a different counselor so that Larry Kyo and Laura would have their own contact if needed. I cried through the entire session, sorry kids. There are so many elements of difficulty but this one is brutal in knowing that Larry will be missing so many important parts of our kids lives. It is brutal for us and for them.
Month of June, 2012, Part 1
6/4/12
Met with the Gastro Dr. who actually brought Larry's CT and MRI films up on his laptop to show us what it all looked like. The MRI cyst looked a lot bigger than what we had in our minds. I am not a professional but still have had quite a few images shown to me on my own health. I commented that the cyst looked like it was also in his stomach area. He looked at the radiologist report again and said no, brought the film back up and maneuvered it a little. "Are you sure it is not in the stomach?" He said he needed to perform an ultrasound guided endoscopy to see everything clearly. Told us there was no rush and to make an appt that is convenient for us. As we were walking out Larry and I looked at each other and both said, let's get this done asap. We were very concerned. The endoscopy was scheduled for Friday, June 8th. This day began our nights of not sleeping.
6/7/12
Jim, no Justin, just can't get this guy's name right, arrived with some of my landscape plantings. He told me that he would finish everything on Friday, June 8th. I explained that Larry was having an endoscopy and that I would not be around until the afternoon. Yes I was nervous. Nervous about Larry's test and also about not being around for the 2nd day of plantings. Being awake most of the night is not helping matters.
6/8/12
We had an unsettling feeling after leaving the Dr's office this past Monday. I asked my son, Larry Kyo, if he would go with us for the biopsy. I was reassured that our Dr seemed to have the skill and used the latest technology. Also, he would have a pathologist in the operating room to make a preliminary diagnosis.
When Larry was in the recovery room and sitting up we were called in. The Dr. came to talk to us. The news was horrible. The preliminary diagnosis was Pancreatic Cancer in the pancreas, stomach and liver.
How did we go from a cyst to malignant cancer? Why did 45 days pass from his fall to this diagnosis? Why wasn’t anyone concerned?
Oh God, this cannot be happening to us! Hasn't our family been through enough and suffered enough in the last 7 years????
The three of us return home (I have no memory of even driving home) to buckets of tears and hugs. We sit and cannot move. We are frozen in time of disbelief. Larry/Dad is the healthy one. He runs, he doesn't get colds, no flu, has never been sick. Only one hospital procedure, for his parathyroid 12 yrs ago, where he complained that he didn't even get a meal.
How are we suppose to sleep? We don't. We are up all night walking around the house, our brains in overdrive. Finally Larry takes an advil pm and gets to sleep. It is not working for me.
I hear my son come home around 1am. This is the first time I see him drunk. I hold the garbage can while he vomits his fear. I tuck him in to the couch with his garbage can beside him. This will be a very long road of denial versus reality for my son.
Everything has been harder for my children throughout their life. Being adopted means feeling the pain of questions without any answers. This diagnosis for their Dad means having to bring forward, that deep, mostly hidden pain. How cannot I not cry.
6/9/12
I leave to pick up my daughter, Laura, from the train station to come home. I am tied in knots having to tell her. I refused to tell her on the phone. When I saw her walk over to the car, when I saw her face, it was obvious she already knew it was bad. I did not want to give her the news in the car, yet she already guessed. It was the longest drive home.
Laura had gotten very close to her Dad since attending school. She visited him often in his office at school. She even had him as a teacher for a day. He would listen to her intently as she struggled through her classes. He would take her out to eat and for ice cream. It has truly been a special two years for them. I was very happy that this happened. How brutal this all is for her.
Why is it I always seem to cry in my car? So many times horrible news has been given in my car. Has God followed me to my car during these times? I am so angry at him. Sharing this with Larry, he reminds me that he believes that God is a woman!
I again cannot sleep. It is 3am and the pain is just whirling inside me. I know what a panic attack feels like. I wake up Laura and ask her to take me for a drive. I wake up Larry Kyo and ask him to take me for a drive. Neither stir, they turn over and go back to sleep. I know better than to get behind the wheel myself.
I cannot breath on this warm night. I go into my car and let out a primal scream. It seems like it goes on forever. I then take my box of tissue with me and walk in my nightgown, up and down the block, cursing God, until the daylight breaks.
6/10/12
We both awake to tears at the realization of what has happened.
Can we please wake up from this horrible nightmare?
No, it is real. Every morning now, whenever we awake, the pain punches our stomach and heart.
6/11/12
Larry received the official diagnosis by phone this morning at 10am. Stage IV Pancreatic Cancer, Terminal.
I cannot explain the deep seated pit of the stomach pain for us and our son and daughter. Fear, Panic, Sadness, Disbelief, rolled up into a ball and placed inside all of us.
We had many many group hugs.
I go to the internet and stay there for 6 hours. By the end of the day, I have made 6 Dr appts with Pancreatic Cancer specialists at all the area hospitals. All said the same-they were double booked.
I told them we needed to get in this week. A few would not give me an appt without a Dr referral. So I told them that our Dr. referred us, often just naming a Dr who popped into my head.
Many said that they needed the Dr to call them. I told them that we did not have that kind of time with this cancer and fibbed that he was on vacation. Worked for all the hospitals except for Northwestern and Loyola which said we had to wait for the following week. They did however get us an appt.
6/13/12
Our first appts today. We saw a surgeon at LGH that was recommended to us by Larry's doctor. He
gave us more bad news. Surgery is not an option once pancreatic cancer
has spread to the liver. Even though he is not an oncologist he spent time with
us about options. He told Larry that if he had the diagnosis he would do
nothing. He told him that he could go to Florida for a few months and enjoy
himself until symptoms became a problem. He actually had some patients who did
that.
We left more
depressed than ever. I told Larry that it was his choice on what he does and
that I would support him with whatever decision he made.
In the afternoon, another Surgeon this time at Northwest Community Hospital. The same response, no surgery once it has spread. He did however, call an oncologist and had us go directly to see him.
Why have Oncologists become sales people? He spent an hour trying to convince us to sign up now. We both liked this Dr and he was using the latest Folfirinox chemo cocktail. We have never been to this hospital but it is close to home. They took the time to see us without an appt. This is definitely an option.
In the afternoon, another Surgeon this time at Northwest Community Hospital. The same response, no surgery once it has spread. He did however, call an oncologist and had us go directly to see him.
Why have Oncologists become sales people? He spent an hour trying to convince us to sign up now. We both liked this Dr and he was using the latest Folfirinox chemo cocktail. We have never been to this hospital but it is close to home. They took the time to see us without an appt. This is definitely an option.
Month of May, 2012
5/8/12
Larry saw his family Dr on May 8th. His Dr told him that he should get an MRI. However, Larry was unable to lay down yet and since we were leaving for a Florida vacation, he would do it after. His Dr was ok with this. Again no urgency was placed on getting this MRI quickly.
We had a wonderful vacation even though Larry was still uncomfortable and healing. When we returned, he scheduled an appt for his MRI for later that week
5/25/12
I called to get the results of the MRI. When his Dr. talked to him he read the MRI report to him which stated "a cystic mass in the body of the pancreas measuring 4X3cm". It also stated that there "were no liver defects seen. A few incidental tiny liver cysts are noted." Impression: "Cystic mass involving the body portion of the pancreas. MRI findings are most consistent with a chronic pseudo cyst. Reevaluation in 4-6 months recommended." His Dr decided that he should see a gastroenterologist at LGH.
Now anyone that knows me, understands that I will always question a Dr and what they do or don't do. I looked up the gastro Dr's at LGH and noticed that they did not mention any experience with the pancreas. After a little research, I found a Dr in Skokie that actually specialized in the pancreas. We made an appt.
5/28/12
Larry started teaching summer school. Laura also started summer classes and moved into an apt by her school. It was difficult having her leave and seeing her room empty. Yet I was more happy for her than sad for me. Larry Kyo was working more hours and he and I went to see a rocking Red Hot Chili Peppers concert. I continued to practice Healing Touch and keeping busy. I was also eagerly waiting for my new plants, bushes and a tree to be planted on June 7th.
Larry saw his family Dr on May 8th. His Dr told him that he should get an MRI. However, Larry was unable to lay down yet and since we were leaving for a Florida vacation, he would do it after. His Dr was ok with this. Again no urgency was placed on getting this MRI quickly.
We had a wonderful vacation even though Larry was still uncomfortable and healing. When we returned, he scheduled an appt for his MRI for later that week
5/25/12
I called to get the results of the MRI. When his Dr. talked to him he read the MRI report to him which stated "a cystic mass in the body of the pancreas measuring 4X3cm". It also stated that there "were no liver defects seen. A few incidental tiny liver cysts are noted." Impression: "Cystic mass involving the body portion of the pancreas. MRI findings are most consistent with a chronic pseudo cyst. Reevaluation in 4-6 months recommended." His Dr decided that he should see a gastroenterologist at LGH.
Now anyone that knows me, understands that I will always question a Dr and what they do or don't do. I looked up the gastro Dr's at LGH and noticed that they did not mention any experience with the pancreas. After a little research, I found a Dr in Skokie that actually specialized in the pancreas. We made an appt.
5/28/12
Larry started teaching summer school. Laura also started summer classes and moved into an apt by her school. It was difficult having her leave and seeing her room empty. Yet I was more happy for her than sad for me. Larry Kyo was working more hours and he and I went to see a rocking Red Hot Chili Peppers concert. I continued to practice Healing Touch and keeping busy. I was also eagerly waiting for my new plants, bushes and a tree to be planted on June 7th.
A Very Slow Path to a Diagnosis
4/21/12
I was away this day taking Level 3 Healing Touch classes in Wheaton, Il . Came home after a 10 hr class and had to take My Hubby, Larry, to the ER@Lutheran General Hospital. He had fallen down a few steps earlier that day carrying laundry. He did not feel he had hurt himself until the pain became intense that evening. He waited for me to come home instead of calling me. Typical Larry, not wanting to bother anyone.
After an xray, it was found he had a broken rib. The ER Dr also felt we should wait around and get a CT to make sure his lungs were not hurt with the fall. She came back into our curtained space around 3am to tell us that his lungs were clear but they had found a pseudo cyst on his pancreas. He was released with instructions to see his family Dr. when convenient. No urgency was ever put on this cyst.
Larry of course told everyone that he no longer has to do any laundry because it is much too dangerous for him!
I took more weekend classes, Larry finished his semester teaching, we went to a wonderful Yanni concert. We were also looking forward to leaving for a family vacation in Florida on Mother's Day.
I was away this day taking Level 3 Healing Touch classes in Wheaton, Il . Came home after a 10 hr class and had to take My Hubby, Larry, to the ER@Lutheran General Hospital. He had fallen down a few steps earlier that day carrying laundry. He did not feel he had hurt himself until the pain became intense that evening. He waited for me to come home instead of calling me. Typical Larry, not wanting to bother anyone.
After an xray, it was found he had a broken rib. The ER Dr also felt we should wait around and get a CT to make sure his lungs were not hurt with the fall. She came back into our curtained space around 3am to tell us that his lungs were clear but they had found a pseudo cyst on his pancreas. He was released with instructions to see his family Dr. when convenient. No urgency was ever put on this cyst.
Larry of course told everyone that he no longer has to do any laundry because it is much too dangerous for him!
I took more weekend classes, Larry finished his semester teaching, we went to a wonderful Yanni concert. We were also looking forward to leaving for a family vacation in Florida on Mother's Day.
The Start of Our Nightmare
STAGE 4 PANCREATIC
CANCER-
I am starting this
blog because I need to share. I am not looking for sympathy or understanding. I
do not believe anyone can understand unless they have lived through someone
they love being diagnosed with a cancer that comes with the word Terminal. I believe
in prayer and as of yet have not been able to pray. So I welcome prayers from
anyone and every religious background.
If Larry was writing
this it would probably be statistical information with a lot of humor. He tends
to hold his emotions inside. I, however, do not. So a warning that my emotions
are raw and can go almost anywhere.
I know very little
about Pancreatic Cancer. Yet I will once again become educated about a disease
and be in the midst of the medical community. Another set of Doctors and Nurses
that I will depend on. I feel my life has been centered around Doctors, Nurses
and Hospitals. The list of Doctors I’ve dealt with has now become much too
long. Most have been wonderful and I am thankful everyday that I live in a city
that has some of the best.
HOPE. I hope this
blog answers all questions my friends and family have and keeps everyone
updated. I
hope to
share information with others who may find themselves in the same hell as we
are, dealing with a diagnosis of Stage IV Pancreatic Cancer. I hope to educate people about this disease that robs
people of their futures. That is robbing Larry of his future and our
future together as a married couple. I hope for
a miracle. I
hope.
Foods That Heal....For Cancer and Everyday
UPDATE: I have found that the standard Cancer Diet has not been helpful for Pancreatic Cancer because of the digestion being so compromised. We have had to remove many of the foods below from Larry's diet. His digestive system is not tolerating a lot of fiber or fat. Juicing being the worst. I had to switch him to a mostly protein diet with rice. He is doing his best to stay alkaline using baking soda and lemon. Yet is unable to drink large amounts of water. He sips water but is only managing about 5 cups a day. Cruciferous veggies, beans, nuts and seeds have had to be eliminated. He is tolerating Whey Protein Shakes with bananas. We have also had to add Boost to his shakes. Keeping his calories up has been a problem. Also, when we eliminated red meat his hemoglobin went down. This was before he started his chemo treatments. So, he is now occasionally eating grassfed beef, bison and lamb.
DIET:
FOODS THAT HEAL
This section contains information I gathered from many sources.
The biggest piece of information I can share is to alkaline, alkaline, alkaline
the body! Cancer grows in an acidic body. Meat-very acidic. Dairy-causes
inflammation in the body. Use unsweetened organic almond, soy, coconut or rice milk.
Sugar-remove from diet. Can use stevia or small amounts of agave nectar.
Caffeine-very acidic. Shellfish-causes inflammation. Anything White-remove all
from diet. White sugar, flour, white rice, white breads-gone!
Water-
Drink 1/2 your body weight of water, daily. Example 160#=80oz of
water daily. Divide into 10oz glasses and you know that you need to drink 8
glasses a day.
To alkaline, drink your first glass and last glass of water before
bed with 1/2 tsp of non-aluminum baking soda mixed in. Our bodies become acidic
overnight. Also, drink water throughout the day with a squeeze of fresh juiced
organic lemon in it. One would think that lemon is acidic but lemon neutralizes
the body and reduces the acidic base.
Juicing-
Purchase canning jars so that you can juice enough to keep in the
fridge for a few days. Veg juices last about 3 days in the fridge. As you make
your juice cocktail, fill up each canning jar to the very top so that no more
can be added. Hold the disk sealer just over the top of the jar and press down.
Some juice should squirt down the side of the jar. This removes all the air in
the jar. Place the sealing ring so the disk is secure. Once you open the jar,
you must drink all of its contents withing a few minutes. The reason is that
prolonged exposure to air will destroy the enzymes.
The tastiest ORGANIC VEGGIES to juice are carrots, cabbage, beets,
daikon radish and red radish, fresh celery, tomato, ginger, garlic, cayenne,
wheatgrass, barleygrass, parsley, spinach, kale, chard, cucumber, pepper and
dandelion greens. "I have had patients raise their platelet counts and the
only thing they do, per my recommendation, is to drink wheatgrass juice. I have
this fully documented." Dr. Leonard Smith
Healthy Fats-
Cold pressed(expeller pressed) unrefined oils. Keep refrigerated
and not exposed to light or air. Flaxseed oil, Sesame oil, Olive oil, Coconut oil, Avocado oil, Udo's
oil, pure butter-no margarine.
Snacks-
Protein fats like nuts mixed with non starchy veggies or avocado.
Only raw nuts, not roasted-Roasting
destroys some of the vitamins and many of the valuable live enzymes in raw
nuts. Trader Joe's has a wonderful selection of raw nuts. Most nutritious are Walnuts, Almonds, Pecans,
Brazil Nuts, Pistachios and Hazelnuts. Seeds are also healthy, Pine nuts,
Pumpkin seeds, Chia seeds, Flax seeds, Sesame seeds and Hemp
seeds. Organic Almond butter and organic cashew butter make great protein
snacks with fruit.
Sorry, nothing with peanuts. Peanuts extremely acid and are susceptible to a fungus that
generates poisons called aflatoxins. Aflatoxins can cause liver damage, so many people avoid
peanuts and peanut products. The issue is even worse with natural peanut butter
since they are actually more susceptible to the growth of the mold because they
are less processed and have a shorter shelf life; therefore the mold is more
likely to thrive.
Use your snack time to get in your daily amount of veggies and
fruits. Most know what fruits and veggies are healthy. Try bok choy, edamame, tabbouleh,
hummus, guacamole, chickpeas, smoothies and
popcorn the old fashioned way(not in a bag).
These are a must: Organic Only
Celery-
Only fresh with no brown spots. Studies have shown it can help
prevent cancer cells from spreading. Eat 2-4 stalks a day.
Kiwi-
Multiple studies have shown that kiwifruit reduces damage to DNA
and prompts damaged cells to repair themselves. Eat 1-2 kiwi a day.
Spinach-
Is anti-inflammatory. Toss a handful in salad or a smoothie. Aim
to eat a few ounces everyday.
Cooked Carrots-
Inhibits tumor growth. Nutrients are more easily absorbed when
cooked lightly. Eat daily.
Cabbage-
Stimulates enzymes that detoxify carcinogens in the body. Red
cabbage is far superior to white, with about 7X more vitamin C and 4X more
polyphenols. Eat at least 4 times a week.
Broccoli-
Calorie for calorie, broccoli contains about twice the amount of
protein as steak. It neutralizes carcinogens and helps to remove them from the
body. It it raw. Eat every day.
Kale-
Is anti-inflammatory and highly nutritious. Eat every day.
Cherries-
Cherries are packed full of substances that help fight inflammation and cancer. Two important compounds found in cherries, quercetin and ellagic acid, have been found to inhibit tumor growth.
Dinner Proteins-
Most fish. If cost is an issue you can find some healthy canned
fish. Please know that most supermarket canned fish contains BPA from the can.
Wild planet, while pricier, does not. Canned sardines, salmon, mackeral are
very healthy. Organic chicken is also an option. Eliminate red meat and only
occasionaly eat pork. Beans and Legumes are another option but may be hard to
digest. Adzuki beans, Black-eyed peas, black beans
and chick peas are relatively benign. Indian pulses, such as split mung beans
(mung dhal), or red lentils (masoor dhal) are easy to digest. Prepare them yourself, they freeze very well. The only brand in a can without BPA is Eden. Eden Foods has been leading the BPA-free way for years, with a policy in place since 1999 and all of its organic bean products in cans lined without BPA.
My Research on Pancreatic Cancer
This research information is for my family, friends and anyone diagnosed. I also hope to bring to everyone's attention the underfunding and lack of treatment options.
Having worn that pink ribbon twice, I believe there should be a fairness of medical research to all Cancers. It is very disturbing to read that there has been no significant progress in the treatment of Pancreatic Cancer. Pancreatic Cancer is currently the least funded of the major cancers – with only two percent of the National Cancer Institute’s budget devoted to pancreatic cancer research.
Just because PC is a death sentence in 2012 does not mean it has to be that way in the future. To change this, voices have to be heard. Advocacy must occur.
Where are the Phase 3 clinical trials? Why isn't there more research being done? Where is the blood test marker? Where is the Ribbon for Pancreatic Cancer??
From what I understand, pancreatic cancer is usually not even diagnosed until stage 4 because there are few symptoms before that. If it's caught earlier, it's often accidental in the course of treating something else. Pancreatic cancer is the fourth leading cause of cancer death in the U.S. Pancreatic Cancer is known as the silent killer.
The majority of people who are diagnosed with pancreatic
cancer have a poor prognosis because by the time symptoms are obvious enough to
get noticed, it has already spread to other organs(metastasized) and
systems.
The most common type of pancreatic cancer, accounting for 95 percent of diagnosed cases, is adenocarcinoma. This is a type of cancer in which the tumor forms in the part of the pancreas that makes substances involved in digestion. Adenocarcinomas are often found in the head, body or tail of the pancreas.
A small number of pancreatic cancer cases involve cancer of the endocrine cells in the pancreas. Endocrine cells produce hormones used by the body, such as insulin. Cancer involving these cells is known as islet cell tumors, or pancreatic endocrine tumors. Chances of recovery are greater for cancer involving the endocrine cells in the pancreas.
The pancreas is a gland about 6 inches long that is shaped like a thin
pear lying on its side. The wider end of the pancreas is called the head, the
middle section is called the body, and the narrow end is called the tail. The
pancreas lies behind the stomach and in front of the spine.
Prognosis:
Pancreatic cancer is based on a 5-year percentage rate. The
prognosis for stage IV pancreatic cancer is grim. According to the American
Cancer Society, only 1 percent of all patients diagnosed with stage IV will
survive 5 years after diagnosis. According to the website below, no matter what
the stage, only 20% of people live beyond a year after their diagnosis and just
4 percent survive the 5yr marker.
Pancreatic
Cancer Action Network (PANCAN).
This amazing
organization provided one on one contact with me. I am very grateful to them.
After I submitted my email someone contacted me the next day. He provided me
with information that I was unable to retrieve on my own. After a one hour
telephone conversation, he then sent me emails with contact information and
everything that came up in our conversation. I was told that anything on
the pancreas should immediately be dealt with by having an MRI. It is obvious
that our doctors are not aware of this.
I found out that remote consults are given from some of the major hospitals in our country. With your Dr's phone call, you can then send your medical information to them and they will contact you with an opinion. Some of them offer second opinions for pathology; in other words, to confirm the diagnosis and staging of the disease. Others offer medical second opinions, where a physician would evaluate a patient’s proposed treatment plan and potentially offer other options.
Advocacy: Since
there are so few survivors, PANCAN is relying on family members to
pick up the fight. Pancan was founded in 1999, and before
that there was no movement for pancreatic cancer. Now they need people to raise
their voices and put a spotlight on pancreatic cancer so they can change the
facts of this cancer.
"And that’s
exactly what PANCAN is hoping to do – change the playing field. 650 advocates
for the foundation met on June 26th(our birthdays) with congressmen and
senators to discuss the Pancreatic Cancer Research and Education Act – a bill
that would force the National Cancer Institute to create a strategic plan for
pancreatic cancer. This landmark legislation will direct the National Cancer
Institute to develop and fund a long-term comprehensive research strategy for
developing early diagnostics and better treatments to increase survival rates.
In addition, we will continue to play a leading role in the Deadly Cancer
Coalition, joining with the advocates of other overlooked deadly cancers to
increase the attention given to the patients facing these diseases."
Read
more: http://www.pancan.org/
Clinical
Trials:
Phase I trials are testing a drug that has recently started on its
path toward potential FDA approval. Therefore, dosage, safety and side effects
are tested in a small group of 20-40 patients. Phase II trials are still
testing dosage, safety and side effects, but are also testing the effectiveness
of the trial drug. These trials usually enroll 25-100 patients who may or may
not have had prior treatment. Finally, phase III trials enroll several hundred
patients which are randomly assigned to either the new treatment or the
standard of care treatment. This is done to compare the efficacy of the new
drug against the standard drug. Most Phase III trials are for patients who have
not yet received any drug treatment. It is mostly recommended that you enroll
in Phase 3 trials because it has been determined by that phase to by safe.
Looking over the last 10 years almost all the clinical trials in
the United States were withdrawn or terminated. In my search of the Chicago
area for current clinical trials, there are only two Phase 3 trials being offered,
using the old standard of care drugs, for stage 4 pancreatic cancer. A few
Phase 2 and mostly Phase 1. The newest form of treatment called
Folfirinox is currently not being offered in any Phase 3 trials in the United
States.
Treatments options for Stage 4 Pancreatic Cancer:
Adapted from the NCI Cancer Bulletin.
A four-drug chemotherapy regimen has
produced the longest improvement in survival ever seen in a phase 3 clinical
trial of patients with metastatic pancreatic cancer. Patients who received the
regimen, called FOLFIRINOX, lived approximately 4 months longer than patients
treated with the standard of care used for the last 15 years called gemzar or
gemcitabine. (11.1 months compared with 6.8 months). This trial was conducted
at 48 hospitals in France and published in the May 12, 2011, New England Journal of Medicine.
For more information:
http://www.cancer.gov/clinicaltrials/results/summary/2011/pancreatic-chemo0611
The chemotherapy options are few and can
have an impact on quality of life. Your Dr. should discuss with you the best
protocol so that you do have a decent quality of life during your remaining
months.
Another option is to not do any treatment
and immediately go into hospice care at home. This was discussed for days
between my husband and I. It is not an easy conversation but I believe is necessary.
I came across an interesting article
written by a physician on this subject. Doctors will do anything to keep some
patients alive, but they take a different approach when it comes to their own
lives, according to USC Medical School's, Ken Murray.
How Doctors Choose to Die?!
When
faced with a terminal illness, medical professionals, who know the limits of
modern medicine, often opt out of life-prolonging treatment. An American doctor
explains why the best death can be the least medicated – and the art of dying
peacefully, at home.
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