debnorcal

Gail,

I am so very sorry that it has come to this. My heart is breaking for you and your children. Your courage and clarity of mind during this unimaginably difficult time are admirable. You are doing an outstanding job of providing comfort to your husband and also leading your children through this difficult terrain. Hang in there – your husband’s journey will get easier soon and there will be time to relax the need to be strong and accept comfort from your friends. We are here for you.

Debbie

Dear Alikemal,

You have my most sincere condolences in the loss of your mother. I hope you have some comfort in knowing you did everything possible to help your mom, and I’m sure your loving presence was a big comfort to her.

Debbie

Gail,

I am also glad you were able to make graduation day special. Love your photo.

I am so sorry your family is going through this exceptionally trying time. You have taken the
lead with courage, wisdom, selflessness and sensitivity, and most importantly, devotion
to your husband. I can tell you from experience that having you at his side throughout this
Illness matters more to him than you may know. You are doing your absolute best, and you are doing an outstanding job. You will get through this. I am sending loads of positive thoughts
your way today, plus a big virtual hug!

Debbie

Dear Carole,

First, I want to belatedly welcome you to our group, I read your initial post a few weeks ago and have been following your husband’s story as time permits, but my time has been completely absorbed with a family issue that didn’t leave time for anything else, even postings here.

I am glad that you found us because, as I’m sure you discovered, understanding, searching for treatments, and managing this disease is a monumental task., and we on this board collectively have a lot of experience and we can guide and support you. It sounds as though you have been doing an excellent job of guiding your husband through this nightmare. I wish there were more treatment options available to him at this point in the progression of his disease.

I am glad that your husband’s immune system has not been impacted- he would be feeling worse if it were, and I am glad he has far exceeded his doctor’s prediction made back in August. Nevertheless, it does sound as though he is in late stage progression, which I am sure is heartbreaking. My prayers go out to you, your husband, and your entire family.

Regarding the adult children in your family, of course I don’t know them or the family dynamics, but I do know that serious illness of a parent is a very difficult thing for all children to deal with, regardless of age. We all experience impending loss in our own way. For some, it is too painful and they may put an emotional wall up or try to keep busy and ignore the pain. Whatever their particular approach is, we can’t control the actions of our adult children. I would suggest you let them know that, even though it is difficult to see him in this situation, it would make their dad so happy if they would visit and maybe help with a task. (You have probably already done this). Then they will choose to spend time or not. For your young daughter, my heart just breaks. Talking to her in an age appropriate way about what to expect, and reassuring her that you are healthy and will be there for her, may be helpful. Just talking with her may give you some insight into her unspoken worries so that you can address them.

I am sorry for the long message. I am keeping your family in my thoughts. Please lean on this group for support. Thank you for keeping us updated.

Debbie

Dear Hopeseeker,

I would bring these symptoms to the attention of her doctor today. It could be a blockage caused by a tumor. Often, itching can be caused by increased bilirubin, which can elevate with a blockage. If there is a blockage, it can cause an infection which can get serious very quickly. You didn’t mention if your MIL has a stent to allow the bile to flow. If so, it may need to be changed. If not, she may need one. It is inserted via a simple procedure called an ERCP. It could be due to the conditions you mentioned. The doctor should be able to advise. Even though it is the start of a long holiday weekend, I suggest placing a call to doctor today, as she may need to be checked right away.

I hope you figure it out quickly and your MIL experiences relief quickly.

Debbie

Diane,

Our world was also turned upside down when my husband was diagnosed at age 55. We relied on advice from the wonderful members of this board, and we sought out and found a highly experienced medical center in Northern California, and more than two years post resection, my husband is still cancer-free. You are in for a rough ride, but a team of cc medical experts, such as USC, as suggested by Marion, can offer your husband the best possible treatment options for his specific condition. Hang in there, there is hope!

Debbie

Lainy, it has been a pleasure getting to know you on line. Despite the awful circumstances that bring many of to this site, this community is full of amazingly generous and caring people, and you are one of the superstars. You are always so positive and have a knack for finding the silver lining, and your sense of humor always makes me smile. Thank you for welcoming me when I first joined this community, and for all the guidance, encouragement and support you have provided to so many.

I wish you much joy in all your adventures.

Fondly,

Debbie

Semih,

I am glad you found us and have benefitted from the knowledge and experience of our members. Thank you for posting your story as well.

I agree that it would be wise to give the chemo a try. It is quite possible that your tumor(s) will respond well to it. Despite all the negative information available on line about the chemo, it is generally better to start with the first line treatment that has proven results for some before moving onto an unproven trial. Additionally, the Netherlands DRUP protocol seems to indicate the targeted drugs available through the various trials are only used after other treatment options show no response.

Best of luck to you. Please keep us posted.

Debbie