Have the doctors at JH write a letter. One of the doctors my dad saw was out of network, but they were designated as a BCBS treatment center for rare and difficult to treat cancers. It worked for us.

I know how this goes. On one occasion, BCBS sent a notice that my dad owed a particular bill, once I called and told them he want' paying, they backed down. Sometimes, I swear they trying to see what they can get away with.

Thinking of you! Jan

Agree with what others have said about bad luck, we were told "the same odds as winning the lottery" with my Dad. Glad to know I am not crazy when I have these same thoughts and get convinced that CC is in my future. Though I do believe that dwelling on such things can impact one's health.

I have taken steps to be more healthy in an effort to stay off Rx meds, not that I had any condition, but I believe the fewer chemicals one takes in, the better. 

Since my dad passed away, I try to eat organic food when possible, I watch my weight -- I had about 15 or so extra pounds. I have started back on an exercise program and I loosely follow the FAT FLUSH PLAN, a diet centered on liver health. I don't take the supplements, but I do drink the cranberry juice, lemon water, take the flax seed (my dermatologist had suggested it for psoriasis and it seems to be helping.) I watch my carbs and sugar.

That said, I am not overboard, I do dine out knowing that much of what I am eating does not fall with the above parameters. (I happen to live in a "granola" community, so there are organic restaurants if I choose. ) I am regimented on the exercise. Some time ago, I gave up diet soda and I have now almost given up regular soda--30+ days without one!

There are some threads on here about commonalities among CC patients From what i recall, high sugar intake and/or artificial sweeteners and statin prescriptions were some of the top ones.

I have followed yours and Dave's story and been inspired how bravely you two fought this. My thoughts and prayers are with you and your daughter.

Jan

5

(9 replies, posted in In Remembrance)

I will write the only thought in my head right now: that sucks. It is the same one that hit me with John Ur too. I guess because of their youth. I am sorry for Hans, but glad that the fight is over. Lord knows she gave it (and this board and everyone around her) her all.

Like someone else posted, it is news like this that makes coming to this board so difficult.

6

(54 replies, posted in In Remembrance)

Teddy is on to his next adventure. I am so sorry for your loss. You both fought as hard as you could and handled it gracefully and have been an inspiration to so many. Godspeed Teddy! Hugs to you, Lainy.

Jan

7

(18 replies, posted in General Discussion)

Pam,

I am sure as much as it was your honor, your father knew and appreciated all you did. I am sure he loves you for it all the more.

Jan

My dad had back pain for the last 6 months or so. His ran left to right (horizontally, if you will) across the middle to upper middle of his back. Because his started early, he was scanned for mets and found none. I suspect is may be like gall bladder pain and manifest in the back, I hope Teddy finds relief.

Kris,

I am so happy to hear there is a new plan. I hope you know what an inspiration you are to others.

Positive thoughts, good luck and prayers all coming your way!

Jan

10

(16 replies, posted in General Discussion)

Lainy,

My dad was on morphine and ativan (lorazepam). Hospice started them simultaneously. Previously, he was very agitated and wrung his hands, etc. The ativan calmed him. Good luck!

Jan

Pam,

I can only echo what others have said. It was a little over a year ago that I was in your shoes. You are indeed providing something precious and invaluable for your father and yourself. I pray for your continued strength.

Jan

Hi Inky,

Sorry to hear of your father's condition. My father was also 86 when diagnosed. I think for patients that old, many doctors view surgery as risky and therapy as too debilitating. I can only speak from my experience, but for my dad, the choices were 6 months of side effects to maybe get 6 additional months. My dad chose to forgo treatment and enjoy the time he had left. He lived a little over 10 months from diagnosis.

Ultimately, the decision is your father's and I am sure he knows he has your support.

Best of luck,

Jan

13

(33 replies, posted in General Discussion)

Lainy,

I am sorry to hear that Teddy's journey is at this point. As helpful as you are to all the posters here, I can only imagine what strength you provide to him. I'll keep you both in my thoughts.

Jan

Hydration, potassium and glucose could also be culprits.One of my personal speculations (and I am not a physician) is that since alzheimer's is caused by an excess protein, and that protein is broken down and flushed by the brain and liver, if the liver isn't functioning, it seems that could cause an excess thus leading to Alzheimer's symptoms.

My father had the same issue before he passed away. It is so frustrating for the patient and the family. I can empathize. We checked all of the above and never really solved the problem.

Hi Pam,

I understand being blindsided by grief. My daughter had her first dance recital this weekend and one of the groups danced to Daddy's Little Girl and I thought I was going to have to leave the auditorium.

I hope that you can feel your Mom's presence as much as I feel my Dad's. When I think back on "last year this time" I know that my father had ceased to be himself and it makes it easier to move to happier memories of earlier times. I know he is watching over us and that gives me comfort, but I do so understand how our wishes to have them here can be overwhelming.

I received an email from a friend today. Her partner is battling ovarian cancer. No treatment has worked and now, in addition to lymph node mets, she had lung and liver mets. Cancer is so unfair. This woman is 45 years old.

Take care and know that everything your son accomplishes in his new career is your mother living on in him.

Jan

16

(13 replies, posted in Introductions!)

Hi Bruce,

Sorry you have to be here, but it is a great place for info. My dad was 87 when diagnosed. He never had stent or duct issues so my question would be how much of a procedure is a stent change? My father had what was a minor surgery for a biopsy (laparoscopic entry) and he had a very hard time getting over it. It was supposed to be out patient and he had to spend the night and was sent home with a urinary catheter. Our bodies don't bounce back at 80 like they do at 20 or even 40 or 50. He didn't want treatment either and in hindsight, I wished I had not encouraged him to do the biopsy as the results did not really matter to him. I understand your situation is different.
Is there any drawback to waiting until the stent she has isn't functioning as it should? It may be that her health and outlook at that time would help to determine a course of action.
I sympathize with your situation. It is very hard to accept that your parent does not want treatment. It is the first step in acknowledging the inevitable. I think that may have been the hardest time for me. Above all, respect your mother's wishes, it will be what gets your through some of the times to come.

Take care,

Jan

Heather,

I am so sorry for your loss. Forty two is too young. I will keep your family in my thoughts.

Jan

Another Fern? I thought my mother was the only one (it's her middle name) smile

Sorry to hear about your mother. You've come to the right place.

When it is quick (and it was for my Dad) it can be a bit of a shock even though you knew the inevitable. In my opinion, quick is good. No good comes from lingering. I will keep you and your family in  my thoughts.

So sorry for your loss.

I lost my Dad last September. From what I have read on the board, the experience can vary widely. Other than weight loss, my dad was symptom free until about 4-6 months from the end. He had dementia about the last 3 or so months. He just progressively went down hill. He became more dependent on a walker and got weaker until he was in a wheel chair for the last week. His last three days were spent sleeping (probably more of a coma as he never woke up). We had several battles with constipation and bowel impaction.

Hospice can fill you in on the what to look for near the very end, when she has, as Hospice calls it, transitioned. Bur feel free to ask anything you would like to know.

Mathilda,

I am not aware of your location, but is there a hospice type organization you can contact to help with your dad?

Your father should be checked for bowel impaction. Continuing to give him laxatives that aren't working should not be acceptable. We went through the same ordeal.

Jan

23

(11 replies, posted in Grief Management)

Hi Tess,

We were on vacation this week or I would have responded in a more timely fashion.

I was stunned when I saw your post that a year has passed so quickly. It was 6 months for us on Tuesday.

I am sure your Dad was pleased to see you all together and I am glad to hear Little Jack has taken over the head of the table!

Fondly,

Jan

24

(58 replies, posted in Introductions!)

Hi Jeff,

Sorry you had to find this site. There is lots of good info here and good folks to answer questions.

Two things I found worthwhile, though my father was not a candidate:

-sirspheres

-Percutaneous Hepatic Perfusion (PHP) at the

National Institutes of Health
Erin Kelly
Office: 301-451-6940
Email: kellye2@mail.nih.gov
Melissa Walker:         
301.402.9537
Walkerme@mail.nih.gov


You may also want to check the FDA site for other trials, younger and stronger people are typically more apt to be considered.

Good luck,

Jan

Debby,

I read Pam's response and thought, hey, that's me exactly. But I would like to add something to it.

My father passed away last September. He began appearing in my dreams for the first time since then just 3 days ago. l have been struggling more as of late than any other time and I believe he knows that.

In the first dream, we were together on a vacation, having fun doing something we both enjoy. In the next, he was sick, very much like he was last summer, failing physically and suffering from dementia. Last night's dream is not as clear, but he was himself and not sick.

Maybe it is my subconscious telling me what I already know, but I like to believe it is him reminding me that he had to go, that it was his time and that I should remember the good not the bad.

I (and many others here) completely understand the awfulness those last days can bring and the relief that will come. I spoke with one of my best friends who lost her father suddenly when we were in high school nearly 30 years ago. Obviously, there are pros and cons. I got to say goodbye *and everything else I wanted) but the price was having him linger longer than he or I wanted.

I am so sorry for where you are right now. But there will be better days.

Jan