Pancreatic Cancer Stage IV: I need support

Well, it sounds good and may look good; but you note "you feel you've aged x years." That is a combination of what the cancer has taken away from your body, as well as adverse affects of the chemo, etc. What I believe you need in conjunction with saying the chemo looks good in dropping--is more rest. Ask your oncologist to go over your blood panels with you, so you can more fully understand it. I know in my case, the size and marker increased until I had a conference with our team. In doing that snack when eating, so excess burden on digestion is less. Rest more. Your trying to keep up with a 2 year old, fight a major battle and survive all at once. Did your team ever explain how eating a normal diet with cancer at your stage uses extra energy in the digestive process---I know I have to nap near an hour after meals. Yet, I'm sure our systems differ in many ways. Ensure and Boost are 2 excellent drinks used by many to help fight the loss of vitamins and minerals during the healing process. Hospitals and rehab centers also use it to restore what is often lost.

irvkay312

It couldent hurt i have noticed i feel better when i eat less so i have been slowly adjusting my diet. I love coffee with milk and sugar and that cant be good. as far as slowing down i nap with the baby sometimes. And i sleep good at night. Im remodeling my basement juts to keep my mind and body working im afraid of falling into a big depressing hole.

@ut3cordova Alex: I just wanted to drop you a note to cheer you on. I'm so impressed with the way you are handling your health condition. Eating small meals is a great idea for all types of digestive problems (it is a tough road to follow at holiday meals or celebrations). Resting also gives your body the break that it needs to let the meds and healing take place. Since it is so easy to become consumed with health issues, I admire the way you are keeping yourself occupied with projects that are not health-related. Best wishes as you face your challenges "head-on."

I truly wish everyone well in this fight. I have a new pain it seams to b in the lower lobe of my right lung. I went to the er and its not a blood clot and its not a new tumor thank god. Going to visit my oncology doctor to see see if they have better solutions than the local er. I have a wonderful life and a suportive family i feel so bad for putting them through this i can tell they suffer. I would love to ease this entire process anyone out their with some words of wisdom cause i sure need them.

Hi Alex,
The reality of your situation is tough, for everyone. While we would like to spare our loved ones, it isn't possible. Judging from your profile picture, I believe you have young children. We want to protect them the most. However, it is usually best to talk openly and frankly in an age appropriate approach. If not, their imaginations can create a reality where they blame themselves. Here are some articles from Virtual Hospice that you might find helpful

- Talking with Children and Youth about Serious Illness http://bit.ly/2bk31VQ
- When to Tell the Children: Preparing Children for the Death of Someone Close to Them http://bit.ly/2bRChOd

I truly believe that the people who care about you want to support you, and that they want to share thoughts, fears, tears and joys, and that they wait to follow your lead. As a caregiver and partner, I wonder if @IndianaScott might have some thoughts to share about this.

Did you find out what is causing the pain in your lower lobe of your lung?

Hello @ut3cordova. I am sorry to read about what you, and your family, are going through. While I have not had cancer, my wife had brain cancer for 14 years and I was her primary caregiver during those years. I was glad to read your decision to see your oncologist. To be honest, one of the things we learned early on was the fact even some of the best GP/ER/Internist doctors were 'over their head' when it came to all the complexities of cancer care, treatment, options, etc. but many are loath to admit this. We spent way too much time and energy trying to help my wife's GP understand what her cancer was doing to her.

Each person's cancer journey is unique, just as each caregiver's journey is also unique. Please understand what I say is from my heart, from my perspective, and from my wife's and my experiences during our unique journeys. You can take it with a grain of salt, ignore it, or take it to heart. It is certainly your call -- ask any questions, etc. I have very thick skin since I was a fundraiser for most of my work career 🙂

When it comes to the effects on a family of a family member's cancer journey, I believe it is natural for the adults to want to shelter those around us from the effects of the disease on the family. Our goal during my wife's journey was to not make her cancer fight our children's issue. (I will say they are grown, but that made it no easier on them). That said we did set down some 'rules' right away. Our daughter offered to defer beginning law school in order to be a caregiver for her mom. We said no. Our son offered to move back from a far away state, but again we said no. We told them they needed to have their own lives, to not feel guilty about that fact, that it was what both of us wanted, etc.

I did tell our children I would not ever lie to them about their mom's condition. If something changed, became problematic, etc. I would tell them right away, but that one a day-to-day basis they should use the mantra 'no news means status quo'. We were able to keep our goal until my wife's final 60 days or so.

It is great to hear you have a supportive family! Accept the support they offer with open arms. It is not always the norm -- and the journey you are on can be a very isolating one.

I wish you strength and peace!

A reacent scan of the four tumors (one in the pancreas two in the liver and one im not certain whare it is but its tiny ) that the doctors are following was bitter sweet. Only one tumor (in the liver) grew very slightly the rest stayed the same. The tumor markers in my blood are down to the 200 fron 500 on my last blood test. In my last scan tumors were down 7 percent overall and that brought us much joy. The fact that the tumors did not shrink brings the reality that my diagnosis is terminal. Please dont get me wrong im certenly not going to make it easy for the cancer to win this fight. I know the chemo im on will eventually stop working and then im ready for some exciting new trials. Can anyone explain the cancer markers to me all i know is low is good and high is bad. I was over a thousand when i started treatment in February. Is there a number that means my experation date is comming soon and its time to spend some money Extremely Foolishly. As for now with help from family and friends im taking my family to disney world for seven days starting this Saturday. Any suggestions for disny would be welcome as well its my first time.

Hi Alex,
Here is some information about tumor markers. Which tumor marker went from 500 down to 200? CA 19-9?
- Oncolink http://bit.ly/2cS5gT0
- National Cancer Institute http://bit.ly/2d9E2WX
- American Association for Clinical Chemistry https://labtestsonline.org/understanding/analytes/ca19-9/tab/test/

I continue to admire your attitude: realistic but not defeated. Have you and your family researched your palliative care options and/or availability for hospice care when the time comes?

What marvelous news about the upcoming trip to Disney made possible by family and friends. I still remember its magic from my visit as a child. I haven't been since so I doubt recommendations to specific attractions would be valid. Plan ahead where possible, be ready to change those plans, and bathe yourself in your childrens' fascination. I wish you the best trip filled with memories and magic.

Hi @ut3cordova I wish you all the best in your fight and congrats on the good numbers!

My son and his family live right by Disney. They suggest the following -- always go left in line. Most folks tend to go to the right line since they are right handed. Animal Kingdom is great for kids and Yak & Yeti has great food. They say there is not a single restaurant in Epcot that is not very good. They also suggest, if you have the stamina, watch the fireworks one night.

All our best,

And please, buy the book by Birnbaum about how to see the most of the parks<br>while you are there! It is a lifesaver!<br>https://www.amazon.com/Birnbaums-2017-Walt-Disney-World/dp/1484737776/ref=sr<br>_1_1?ie=UTF8<br><br>&qid=1474516004&sr=8-1&keywords=Birnbaum+%26+Disney Best $12.00 ever<br>spent!!!<br><br>