pancrease54

rick haven't heard from you I haven't been on here I added you to fb tried to how are you?

Good to see you on the site! Hope you're continuing to do well.

hey Rick how are you? lost your email!

That's fantastic!!! Congratulations!!! I'm only 13 months into the journey but I'm staying positive & planning to follow in your footsteps. I'm only 50 & hope I have many years to go. I'm so happy for you! That's great news!

Thanks pancrease54, You sure have through hell. I hope I'm as lucky as you. I'm going to celebrate both my surgery date and my date of diagnosis. Thanks for writing back. Zoe

Hi pancrease54, Your story still is amazing to me. It shows you that regardless the level of your cancer, stage 1,2,3 or 4 there are so many people who have had it worse than someone like me who had different treatments. You had 24/7 of chemo for 6 months. That is amazing to me, because I know what 24/7 chemo feels like for a little over one month, but 6months? Unbelievable!!!
Is August your month of release?
Russ

Thanks for being concerned. My husband was in rehab for 7 weeks because of UTI which all stemmed from his prostate. He had surgery on prostate and everything is ok there. While in rehab they did a TB test and no one ever checked it. I noticed a red spot on arm and took picture and showed to oncologist since they started chemo again. Decided to do another TB test which they said was positive. Sent him for a bronchoscopy which came out fine no TB, fungus, etc. Dr. decided to start him on the TB med just in case which was Isoniazide. He is also on Parkinsons medicine and this interfered with that. Put on another med Rifampin which made him have difficulty urinating so took him off of that. Some doctors say TB test was positive and others say it was not. Had PET scan in April and the original spot in lung which he had RADio Frequency ablation the SUV was .8 but it is so close to the aorta they could not get it all. Now two additional spots showed up in same lung with SUV of 2.7 and 3. They are treating these like metastatic lesions. I do not know much about the CA19 9 but when he was first diagnosed it was 52. After surgery and chemo it has been around 7 or 8 for the last 4 years. The recent one they did in April was 23 and of course in my mind I am starting to worry. His appetitie has decreased and he has lost a little weight. Have you heard about marijuana pills to increase appetite.

Hi 54,

I hope you don't mind if I call you 54, because it was Brian Urlacher's number when he was playing for the Bears. I'm a diehard Chicago sports fan. I was born and raised in Chicago and lived there for 28 yrs, and another 20 yrs in the suburbs before moving to New Jersey.

Was lyrica the drug you are currently on? My doctor tried to put me on it, but I had too many side effects, one of which was taking its toll on my leg muscles. I could hardly walk...I felt as though I was going to fall over.

Your story is amazing...can I assume that you live in Tennesee? There was a time that my wife too thought that she was going to lose me.

Your pain pump...what drug does it inject? Morphine?

I had 5 weeks of 5fu for 24/7 and radiation at the same time for 5 weeks. Then we did Gemzar for 9 weeks...3 on, 1 off, etc.

Keep fighting the good fight 54. You're the only other 10 yr+ pancreatic cancer survivor I have met. Congratulations! You deserve the accolades.

Russ

Pancreas54. Trying to remember if you had adenocarcinoma in the head of your pancreas or if you ad the same type as Steve Jobs.

Hey 54,
I have been looking at your history and would like to congratulate you on your journey. I too am having difficulty with neuropathy. In fact I also had an episode with pain pills oxycodone. I have copied it as it appears in my book below:

Chapter 49th
My 12th Anniversary

Hi All,

On November 3, 2012 it was my twelfth year of being a pancreatic cancer survivor. I was not going to send out an email, but as usual I changed my mind...AGAIN! I must admit that this year was a little tougher physically, and mentally from years past. I believe that the mental part is a bi-product of the physical.

My issues are with my neuropathy which is getting worse, and I am experiencing a lot of discomfort in my abdominal area...left side right under my left rib cage. This is exactly the same area of my original diagnosis, as well as on my back side. I am also experiencing a lot of discomfort in my thighs, and upper arms. It is as though I am itching on the inside, and crawling out of my skin. It is very annoying and I am beating on my arms, and shaking them in an attempt to provide some relief. I believe that this may be withdrawal symptoms from the narcotic oxycodone which I have been taking since day one after my surgery. I stopped taking these pain pills for awhile, but then as my neuropathy got worse I would take more. I was taking 8 pills a day shortly after my surgery, and continued to do so for maybe 3-4 months. I never got back over 5 pills which I did however take for probably 9-10 years until I decided this past year that the pain level with which I was experiencing would be manageable. It is not a constant pain, but it is more intense than in the past. The worst time is in the evening and at bedtime. So gradually over these past 6 months I have weaned myself from 5 pain pills a day, to 4 a day, to 3 a day, etc., etc., and it has been 4 days now with which I have not taken any pain pills. It has not been enjoyable, in fact it has been unbearable. I can only imagine what those, who are addicted to hard drugs, are going through when they try to come clean. As I am typing this I am having a hard time to sit still...my thighs front and back feel like they are itching on the inside. Then later when I am in bed it will be my upper arms and without exaggeration I squeeze my arms real hard, and even punch them to some degree.

I tell all of this to you, because I remember when I first started taking oxycodone I said to the doctor that I don't want to become addicted to these pain pills, and he said if you were not a drug abuser before, the chances are slim that you will become addicted to these pain pills. I would not consider myself as an addict of prescription drugs, but they are so easy to get, and some of the doctors will continue to write a new script every month, because there are no refills...a new script must be presented every month. This is how it starts...they are easy to get, and easy to take. If you experience pain of a certain level it is so easy to just pop a couple of pills. I have already weaned myself to no pain pills at all...but I will also admit that I certainly hope that this itching withdrawal feeling stops soon...it is driving me up the wall and interrupting my sleep for the past two weeks. I did not mean to go on about these pain pills but I have to be brutally honest, and will probably add the above as a new chapter in my book.

I drove down to see my brother and Pat this past October...my 3rd trip. They live in a beautiful community in North Carolina...they live on hole #4. We played golf a couple days...if that is what you would call it. Lyle played okay, but I did not...it was the worst I have played in years. I used my physical condition as an excuse ;-). But I had a good time as always...thanks Lyle & Pat. You have got to get down there and see how beautiful, and peaceful it is...at least for me.

Well I used up most of this anniversary email on my pain pills. But I will let you know how I make out with the doctors. I just saw my cardiologist this week Wednesday and he was happy with the fact that I have not had many palpitations. He was pleased when I told him I am seeing my GP on November 26th to discuss getting an abdominal cat scan/contrast. I forgot to mention the last time I saw my neurologist, just 2-3 weeks ago, he increased my dosage of nortriptyline from 50mg to 100mg. After about 3-4 days of this my body felt as though it was giving out on me. My leg muscles felt almost non-existent, and I had a hard time staying on my feet. I didn't save the sheet with side-effects because I have been taking 50mg of this for my neuropathy with no problem. But I looked up the side-effects on the inter-net. If you experience any of the following, weakness, shuffle feet, sore muscles, pain, hallucinations, etc., stop taking the pills and call your doctor. Well I went back down to 50mg, called my neurologist and will see him on December 3rd. I have been told by a couple of medical professionals that I should never try to come off of oxycodone without professional supervision.

Do I sound like a whiner or what? No but I am tired of taking all of these pills...41 every day! Actually I'm down to 38 because I only take 2 a day of the pain pills...Hooray! Well that was short lived…recently my neurologist has prescribed a third drug for my neuropathy…ropinirole 0.25mg 2-4 pills at bedtime. So now I am back to some 40+ pills a day.

I want to leave all of you with some good thoughts. I am so blessed to be alive today...without a doubt! Whatever complaints I have today are nothing more than minor inconveniences compared to where I was at 12 years ago. I have enjoyed my time working with so many people who have cancer in hopes of making a little difference in their lives. Giving them a light at the end of the tunnel in hopes of beating this horrible disease. On behalf of my wife, and our family we want to wish all of you a Happy Thanksgiving. We certainly have a lot to be thankful for...God Bless all of you and your families.

Love, Russ/Dad/Kid, Urai and family

P. S. Since I last wrote this email I have been to my neurologist and we have worked it out where I could probably manage my pain with 2 oxycodone a day. One at dinner and one at bedtime. This is when my neuropathy is at its worst. I take other pills for my neuropathy throughout the day.

Congratulations Pancrease54! I am sked to get an EUS and FNA biopsy next week, and am hoping for the best. Are you pain free now, or will this continue for a while. My husband and I are so happy for all your successes! Thank you for sharing! Painter

So happy for you that treatment is over and you are cancer free. You have seen it through and have given me hope for my husband. Wishing you all good things for you in the future.

I am so PROUD OF YOU!

Hi Rick. I hope you continue to do well. Your journey is an
inspiration to many of us.

Yo, Damn! You're tough.
T-Gen has info on new pancreatic cancer treatments.

Hello Rick,
Sounds like you had good treatment choice from the start.We are so blindsided
because both big hospitals said18 months to 5 years
Here we are only 3months on gemzar and now stage 4 with 4 in the liver
Hope the pain pump eliminates the symptoms
God Bless

Hey there sent you lots of pics:)

you once sent your email, i lost it...... mines funwithmycritters@yahoo.com we got a chevy its nice i can send pics if you like,

hi how is the weather in ky? here its just awful got a 4 wheel drive other day;) that will be fun, lost your email!

Vanderbilt is where I was treated.

Hope you are doing. Well pancan.com helps people w / psn
Pancrrstic cancer w Ithaca treatment and finances for meds
etc. They are great just passing on the good news! !!

You were diagnosed 9 years ago and are cancer free right now. During the 9 years did you ever have a scare where they thought it might have returned. My husband was supposed to get a ct scan last week but I asked the doctor to put it off until after the first of the year. I want to have a Merry Christmas and Happy New Year. How often do you get a ct scan now?

Hi got your email and sent you some already i lived in ky for along time! i will stay in touch!

If we were of this world things would be easy.and they are not because. Gods
Way is wholesome, beautiful and perfect. This world has little of that left
So lets bring. What is in our hearts to this broken. World and accept
being left out as the. holy one did for in heaven every knee shall bend
At the name of the holy one! Amen

Pancrease54, keep doing what you are doing! I for one am glad you are here.
my sister & I are involved with PAN CAM you might have to google it for
Paccreactic cancer it offers help. Well all have bad days! So talking to
others in the same position is the way to go. I have Ms and people really
don't get that. My montra gratitude '! It is the only way to go. After all
life is the dress rehearsal, what are we waiting for! God Bless You, Natte

Thank you Pancrease54...every word of encouragement is welcome. This cocktail that I am on seems to be working alright..there is the neuropathy in the fingers and toes..with the stage iv, this is agressive treatment...and then the scan...When I was first diagnosed they had thought they would do the whipple procedure until they found the tumor in the liver...so we are on the chemo plan now and wait to see where we go from there...thank you

Thank you for your response. I am new to this site and really not sure how to get around. Were you diagnosed 9 years ago and your cancer just reoccurred? And if so do you have it in the liver, lungs, etc.

My husband had the Whipple on Dec 18, 2007 and was sent home 6 days later on Christmas Eve. It was one of the worst Christmas holidays we have had. He has had no complications from the Whipple. We had a local doctor here in Cincinnati do the surgery. He has done a few Whipples but not many. My daughter is a surgical nurse and has seen him in he operating room. Everyone tries to give opinions but she said he is the doctor she wants.

He has one metastatic lesion in the lung which they just did Radio Frequency Ablation. The procedure went well but they could not get it all because it is so close to a main artery. He had stereo tactic radiation to this spot earlier and evidently it did not work. They are giving him a break from chemo until a new ct scan is done the first of the year. Another thing that is so frustrating is the doctors are telling me that it will be hard to tell if this is a lesion or scar tissue. The only way to tell is if it is growing.

Did they every do a CA 19 9 on you and if so what was it?

I am with your wife it is so hard on the caregiver. I have been with my husband for 47 years.

We are praying for you too.

Linda

I see KY after your name. I was born in Ky and curious what part you are from. Did you have treatment first and then the Whipple?