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No surgery; no RFA; no CE, just standard chemo

LeeandShirley's picture
LeeandShirley
Posts: 122
Joined: Apr 2011

My husband has been dx w. cholyangiocarcenoma, that is inoperable. I understand inoperable, because he has 2 large and multiple small tumors in his liver. It started in his hepatic duct which was resected in Sept. of 2010. Now last CT showed multiple tumors and multiple nodes. What I wonder is, why the oncologist was so quick to rule out the RFA or CE (chemoembolization)? It seems that these might be even better at extending life than standard chemo. That is usually ineffective or short lived if it does work. Is it because of the lymph involvement? The oncologist had a look on his face like, "you're a deadman, but wouldn't tell us anything except the combination of drugs he was going to try. Gem/Cis. He's not even starting chemo till May sometime after more tests and doctor visits. Very frustrating. Seems like if my husband is this serious he should be on chemo , yesterday.

Angel322
Posts: 26
Joined: Mar 2011

I have much experience with this type of cancer. I was my Mom's nurse for two years. She had a biliary drain that I cared for daily for two years. My Mother fought as long as she could, but very sadly, I lost her on Father's day. My Mom had surgery at Johns Hopkins Hospital in Aug of 2008 and the doctor said he got it all and her scans were clear for almost a year. Oddly, though, he said he saw a spot on her liver when he was doing her surgery but they tested it and it wasn't cancerous. Then it came back in her liver not even one year later on July 25, 2009. It was very hard to comprehend. I am devastated as she was my whole world so I understand what you are going through.

My Mother's doctor ruled out ablation and chemoembolization because he said that it would more than likely cause more harm than good. He said abcesses are common when doing these procedures and felt that it would take away from my Mom's quality of life. I begged him to try anything, but he told me it would be taking a BIG risk with all she had already been through. Resection in 2008 (50% of her liver removed), followed by 5.5weeks of radiation and gemcitabine chemotherapy. Then in June 2009 she had to have another surgery due to them over-radiating her. She was bleeding internally. I thought I was going to lose her then, but they saved her. Then one month to the day she had that surgery they did another scan and found a spot on her liver. It was a total blow after she was recovering so well from the radiation surgery and from all she went through to beat this. 2years of her enduring surgeries, treatments, medication only to come to this? I was so angry and so distraught for days. I still am at times. I just couldn't believe how things could change so drastically when the scan from the week before was clear? I will never understand. Now I'm numb and lost without my Mother. While my Mom was sick and going through all of this, I didn't have time to stop and think about all of this as much as I do now because I was trying to help her fight this thing day in and day out. Now I'm left after she is gone trying to process it all...trying to make some sense of all that my Mom went through...and how it could come to this when she was able to have surgery and do all the treatments only to still lose her life? Its not easy. I'm tormented inside everyday.

I'm sure May seems like an eternity away to you and your husband, but your husband's condition will not change much between now and then. However, you should talk with his doctor and voice your concerns. Its your right. Don't hold back! I use to call, email my Mother's doctor's regularly whenever I had a question or something was bothering me. I plan on starting a foundation in my Mother's name to help other patients and families with this terrible disease in her honor. Its the least I can do for all she endured. I hope that I was some help to you. Please write to me privately, if you need support. I am here for you and will try to help you in any way that I can. My heart truly and deeply goes out to you and your husband and all the other patients and families on here dealing with this terrible,heartbreaking disease. Hugs, Angel

LeeandShirley's picture
LeeandShirley
Posts: 122
Joined: Apr 2011

Thank you for your caring concern. I was beginning to believe no one would have any reply to my questions. It seems like only the patients and their caregivers can deal with this subject openly. I think the doctors are embarrased by this cancer, since it is so terrible and unpredictable. Our Oncologist, even though he is a brilliant doctor, just wants to give the drugs and not talk about anything else, because it is difficult for him to be honest. I appreciate your answers about the abcess dangers and that the delay in treatment is not going to be critical. You have eased my mind. I am so sorry for your mothers journey through this horribly devastating form of cancer. I can tell by your words that you were devoted to her. At least you have that. I also lost my mother to cancer 40 years ago. She was my best friend and I still miss her, but the pain is gone. I just have the good memories of our relationship. But, my husband's illness has opened the wound a little. I know some of what I have to look forward to. I hope we do stay in touch and become confidants. Please feel free to open your feelings to me too, because your loss is still new and you may need my shoulder. I know I will need yours. Again thank you for your reply.
With all my sincerity and sympathies, (((((hugs))))) to you too. Shirley

Angel322
Posts: 26
Joined: Mar 2011

Your kind words for my Mother mean so much to me. She was an amazing woman, beautiful inside and out, a real angel on earth. I was the luckiest girl in the world to have her! My heart is so broken. Thank you for your shoulder.

This type of cancer is hard to treat, and very undpredictable, as you mentioned. However, your husband's doctor should talk to you and your husband and meet with you regularly. We use to meet with my Mom's doctor once every couple of months or when needed so he was up to date on how she was feeling. He would sit and talk with us and about her symptoms etc. This is so important, Shirley. Communication is very crucial. Im sure when your husband starts chemo in May, he will be more open with you when he sees how your husband tolerates the treatment. My Mom's oncologist was very gentle and answered all of our questions honestly no matter how hard the truth was to say.

Please tell your husband I am praying for him here in Baltimore and sending him positive thoughts and wishing him all the best in his treatments. I will definitely stay in touch with you, and please do the same. I will check in here on the site regularly. If you have any other questions or just need to talk, please don't hesitate at all. I want to support you and be here for you. Lots of hugs to you and your husband, Angel

LeeandShirley's picture
LeeandShirley
Posts: 122
Joined: Apr 2011

I so need someone to talk to now. Thank you for the offer and I will too be checking in regularly. We can be here for one another. Sometimes listening to others can help you forget the pain you are going through for a little while. Soon.
Huggs Shirley

LeeandShirley's picture
LeeandShirley
Posts: 122
Joined: Apr 2011

My husband's PET scan has come back with just about the same results as the CT scan. One good thing is the node that was thought to be near his lung was not found and there was no enlargement. He will be getting his PORT in next Tuesday and may begin chemo the same day. This has come from the surgeon, we still need to visit his Oncologist this Wednesday. Wish us luck. I will be taking your advise Angel. I have written down a whole list of questions for the Oncologist. Sometimes when we go to the doctor, I just forget everything I wanted to say. Thank you for reinforcing the need for communication. Bless you.

How are you? Don't feel shy about sharing your feelings, too. Talking with you will keep me from getting too wrapped up in my own situation. I do know from my experiences with my mother, that after we lose them, the shock and pain, just then, begins to set in.
Are you working on the foundation for your mother? And how is that coming? I am sure this will be cathartic for you. Keep up the good works.
(((((HUGGS)))))
Shirley

Angel322
Posts: 26
Joined: Mar 2011

I was so happy to read that your husband's PET scan didn't come back with any new results. That is great news, Shirley. Sounds like his treatment plan is in place and he will be well on his way next Tuesday. I pray so hard that the chemotherapy will help him. You have my luck and well wishes with you every step of the way!

I use to bring a list of questions with me as well and go over each one with my Mom's Oncologist or Surgeon and mark them off as I go. Depending upon who we had an appointment with. Its so hard to remember everything when you are there and under so much stress and worry. I would also write down any symptoms or medications my Mom needed, too. Also, after your husband has bloodwork, have his doctor give you a copy of the results and keep in a folder. If there is anything concerning or not, his chemo nurse or his doctor will go over them with the two of you. Its very important to keep track of his bilirubin counts, as well as his liver enzymes. Alkaline phosphatase, AST, ALK, and albumin. Albumin is a very important protein in the liver. If its low, it can lead to poor liver function. They will watch is levels closely, especially while he is in treatment. Also, pay close attention to his potassium levels. It is a very important electrolyte that regulates the heart and controls muscle and nerve function. Don't be too alarmed, as it will drop at times during treatment. I always use to keep bananas on hand for my Mom and they helped a lot.
Of course, his Red and White Blood cell count is important to stay on top of as well as his hemoglobin. I have two large folders of all of my Mom's bloodwork. I was able to go back and look at any improvements or changes each week. It will be helpful for you and your husband to keep track of. But always ask keep these at the TOP OF YOUR LIST: Bilirubin, Liver Enzymes, Albumin, Potassium and Red and White Blood Cell counts. If he has any sugar problems, you can also get his glucose counts. The lab results will show his ranges and the doctor will adjust his treatment/medication's, as needed, depending on his bloodwork.

Today was a tough day. It was my first Easter without my Mom. I just miss her so so much! I long for her everyday, just to talk to her, spend time with her like we use to. We were not only Mother and daughter, but we were BEST friends! We had an amazing bond. I am truly feeling the shock and immense pain of losing her. You really understand. As more time passes, its more real to me and I can't believe all she, and us, her family, went through the last two years. Some days I still can't believe it, some days I can't believe she is really gone and I will never be able to talk to her again. Its hard for me to accept. Grieving is a difficult journey. Each day I just want to wake up from this nightmare, but I can't. Its a very lonely world without my Mother. Nothing or no one can fill her shoes. My family is not the same.

I have started to work on her foundation little by little. My Mom use to walk 5-6 miles a day. I am thinking of planning a local walk in her honor and some other special events. Talking with others that understand helps a lot. Thank you from the bottom of my heart for your support with the loss of my Mother. Is your husband's name Lee? I'm thinking it must be since that is part of your user name. :) My boyfriend's name is Lee. I thought that was a neat connection between us. Please tell your husband Im here praying and keeping him close in thought each day and pulling for him. You, too! :))) Feel free to send me a private email if you'd rather not post certain info. on the message board. Its easy. I will send you my private email to your email on here now. Many hugs to you both!!

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