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La fundación de colangiocarcinoma (CCF) ahora ofrece servicios de traducción en Español.
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Posts found: 1 to 25 of 96
Lainy, I haven't been in here very often as thankfully my husband has been doing well for the past three years since his resection.
I just wanted to wish you well and thank you for being there for me and so many others during our darkest hours.
I very much enjoyed chatting with you about the spiritual aspects of life and I pray that you continue to experience light and love as you go forward in your journey.
Angels be with you Lainy. God bless you.
My husband had another check up today with his oncologist and I'm happy to report that he's three years NED post diagnosis and resection surgery. So blessed to have been treated at City of Hope in Duarte California. For the last 18 months, my husband has been a volunteer at City of Hope in the guest services department. After new patients have completed their paperwork, John escorts them to the lab to get their blood work done and then up to their doctors for their first appointment. Knowing how scary it was for us our first time at City of Hope, I know that he is alleviating anxiety for new patients and their families. When asked by patients , John shares his story about his diagnosis of stage 4 bile duct cancer, his resection by Dr. Gagandeep Singh, and the 6 mo of follow up chemotherapy. There's no doubt in my mind that God is working through John as he helps new patients and their families face their new normal. We thank God every day for his life and I thank the members of this group for getting me through the scary early times. It's reassuring to see so many moderators still providing hope and sharing resources and medical options. May God continue to bless the doctors and staff at City of Hope and also all those on this Board who open themselves so that others may thrive.
How comforting to have Teddy stop by now and then. I have a close friend whose 24 year old son was killed last year in a auto accident. She gets such comfort from his many visits and finds him in a rainbow, sunrise, blooming flower, "sun spots" in pictures, etc. It's amazing how, after meditating on ones loved one, signs are more apparent. Very comforting indeed.
Glad to hear that you have healed so well after a complex surgery. I hear ya about regretting not doing it sooner. I have another friend who refuses to have the surgery and suffers from depression due to the fact that he does not like to go too far from home. I can only relate how my experience was...successful and really not that troublesome or limiting. Hoping that your nerve damage is soon a thing of the past as well.
Thanks for your well wishes for a great holiday. John goes in for blood work next week...another three months behind us. Fingers crossed that he continues to be NED.
Thanks for your continued work with patients and their families. What a gift to us all.
Happiest of holidays to you and yours as well,
I just saw this now and had to post on my facebook wall. Thanks for sharing this video of such talented and gifted children. That song is particularly special for me. When I was an elementary school principal a few years ago, we had a student who had a very aggressive type of brain cancer. He had more surgeries in his short life than anyone I have met. During an awards assembly, in front of 1100 students and parents, I played Josh Groban's version of this song in honor of our student. There was not a dry eye in the house. It will always be a strong that gives me strength in the face of insurmountable odds.
I know it's been posted for a while, but I am now just catching up.
God bless you Lainy.
So happy that your Teddy came back Lainy, and especially at a time that you needed his energy and presence. It's been a while since your post, Lainy. Is T still visiting? I haven't been on these message boards lately. Hoping that you are continuing to do well after your surgery last April.
Great news Julie...you are one tough cookie with little pain after surgery. I'm sure you'll be doing laps around the nurses station in no time. Praying for a speedy recovery.
Hello Dear Sharon and Phil, You have come to a great place for information and support. I am glad that your husband's pain levels are manageable. During chemo, my husband drank a lot of Boost to keep calories up. He found that he couldn't stomach many of his favorite foods, but could enjoy turkey, stuffing and mashed potatoes. Needless to say, we ate a lot of this. As hard as it is, maintaining as positive an attitude is key. I too was angry when people would tell me to trust God and turn it over to Him. I couldn't turn it over at that time but kept praying. I now know that everything is indeed in His hands and a part of His plan. As a couple, we have never been closer and so filled with faith than we are now. Sad how it took this horrible disease to get to this place with each other and our faith. Don't lose hope Sharon. As others have said, everyone is different.
I will add you and your husband to my list for prayers. God bless you both.
Hi Nikki, I totally understand what you are saying as far as severe cognitive loss after diagnosis and chemo. At first we attributed my husband's fogginess to chemo brain after a lengthy dose of GEM/CIS following his liver resection. It has now been 18 months since his surgery and chemo and his cognitive processes are still significantly decreased. This has caused a very deep depression to set in since he has always, prior to diagnoses, been as sharp as a tack. His inability to navigate his smart phone, computer, crossword puzzles, retrieve names, directions, etc. have prompted his doctors to suggest neurological testing for Alzheimers. We had scheduled this test twice and twice cancelled as the anxiety associated with "not knowing simple answers" became overwhelming to him. We didn't see a real benefit to having a diagnosis, only drawbacks such as limitations to his independence.
We have not received a diagnosis of paraneoplastic syndrome and after cursory skimming a few websites, don't feel that this relates to John.
He is taking meds for anxiety and depression which have helped some but his fogginess remains. I totally understand your concern and frustration as shown in your statement, "It's like we lost him before we lose him". I feel the same way, but as I told my husband, I'd rather have a foggy husband that no husband. With nine years age difference, he took such good care of me when we first married, it is now my turn to care for him. I am honored to do so but that doesn't mean that at times I become impatient or frightened at the impact on his life. Tell your mom to remember to care for herself when she can. Find the simple things that they can do together. With John and me, it is gardening or sometimes just sitting in the garden, watching the sunset, talking in the dark. I tell him that I didn't marry him for his brain. I married him for his heart...and that beats strongly and with passion for family and friends.
God bless you and your family. Stay positive if at all possible, and be good to yourselves.
Hi Cat, I'm sorry about your mom's diagnosis. It is indeed a very scary thing to hear and process. I agree with Lainy that a second or third opinion will give you peace of mind that you have exhausted all avenues for treament. I have no words of wisdom, just an offer of prayers for your mum and your family. I know that maintaining a positive attitude, which is oft times difficult, will ease the daily confusion, anger, disbelief.
You have indeed come to the right place as there is a wealth of information with each and every member of this forum. Prayers for strength and comfort.
Hoping that all went well with your mom's scan. I will include your family in my prayers.
I'm so sorry Carol for the loss of your wee dad. What an incredible relationship you had with him. He must've been a wonderful man to have raised such a caring daughter. I will include him and your family in my prayers for comfort.
Duke, I have never really written directly to you but for the past year and a half that I have been in this forum, I have enjoyed your "shoot from the hip" approach at fighting the good fight. You have been an inspiration to me and my husband, and now, as you make your decision to focus on quality, I once again find inspiration. I only hope that when the time comes for my husband and myself, that I can be as brave and eloquent as you. Love the Stones quote...it's so you.
God Bless you and your family as you continue your journey.
Hello Steven, I do not have information on any clinical trials that may be appropriate for your mom but I needed to comment that you are doing an incredible job, exhausting every avenue to find some form of treatment that would meet your mom's needs.
You have come to the right place as people in this forum are knowledgeable and very supportive.
I just wanted to let you know that I will include your mom and you in my prayers for answers towards a cure.
Keep up the great work supporting your mom. She must be a special person to have raised a loving, intelligent son.
Hi Greg, great news that your cc was caught early, that you were able to have the resection and that you are NED. I do not know about the nerve involvement but your diagnosis, surgery and treatment were very close to my husband's. Diagnosed in April 2014, surgery on May 2, clear margins, chemo with Gem/Cis but no radiation. John had 55% of his liver removed and had intrahepatic. We are going in this Wednesday for lab work, but his liver enzymes were normal before the tumor was found incidentally. At the end of September, we will have another CT scan which will hopefully reveal NED.
I just wanted to welcome you to this amazing group of fighters and supporters. They have been here for me when I had questions or was just nervous with upcoming scans.
Good luck with your treatment. You are one of the 2%, as our oncology surgeon says, that qualifies for surgery. Please keep us posted on your progress.
Great news, Duke, about your feeling better now. I have not communicated with you directly before but you have always been an inspiration to me with your honest approach at fighting this dreaded disease.
Keep up the fight and please continue to keep us posted. You are such an inspiration to so many.
Grateful to your family for relaying information to us all.
Thanks for taking the time to research the side effects of his meds, especially as they relate to the concerns that I had. Great information. Great information. John's gp reduced the nighttime dose of diabetes meds and he started that regimen last night. We will talk to his psychiatrist about the effects of his other meds on blood glucose levels. Your post, along with Lainy's, really calmed my nerves as the next appointment at City of Hope quickly approaches. I agree about the MRI contrast being different form the CT contrast. What you suggested was exactly what was done for his last scans...a combination of them both.
Lainy, I agree 100% with your comment about letting our guys have the fun moments/events to enjoy, while we cross our fingers, say some prayers and wait for the call that everything is going well.
Much appreciation to you both.
Will keep you all posted.
Thanks Lainy and Julie for your very detailed messages. John went to his GP this morning as part of his four month follow up schedule. He went out to breakfast afterwards, so that is encouraging. Yes Julie, I am very worried about the changes that I see with him most recently. In particular, that the glucose fluctuations could be a result of new activity with his liver. Lainy, I agree that major surgeries can cause fluctuations in glucose readings and bouts of depression. He is taking Remeron, Xanax and Zoloft and is under the care of experts. We will ask his oncologist next week if we should speed up the ct scan or if waiting till Sept 21 is ok. His last CT scan was 5 months ago. He can only have them every 6 months as the contrast is hard on his kidneys.
I am a bit more relaxed than I was at the time of writing my post. Since then we had two large parties at my house for the volunteers of a trauma intervention program and just this weekend a 75 person family reunion in 104 temperature. LOL Glad that they are both over and maybe now we can rest a bit easier and not add that level of stress to the mix.
Thank you both for your responses. They were much appreciated. I will keep you posted after we see the docs in the coming weeks. You're right Lainy. he has indeed come too far to let this go on too much longer without checking into it.
Blessings to you both. and all of the wonderful people in this forum.
Prayers coming your way right now. A Jesuit friend remarked when I requested prayers for my husband:
"...it's actually a blessing for the rest of us when you let us know that you're in need of support, because it gives us an opportunity to express care and concern for you, even if it's only in the quiet places of our hearts. It's a simple give and take of love that wouldn't happen if you didn't ask."
Hello all, things have been going relatively smoothly since my husband's resection in May, 2014. I have written about his possible chemo brain and his frustration with lack of mental clarity and memory. He is seeing a psychiatrist and a counselor to deal with depression and anxiety.
My question to you all is whether there is a connection between increased frequency of bm's and urination and recurrence of bdc. His sugar levels have been erratic lately as well, often going low which he has never had since being diagnosed as type 2 diabetic many years ago. He is struggling to find pleasure in eating and has to force himself to eat and maintain his weight. This last symptom is very similar to what he experienced prior to his bdc diagnosis in April 2014.
We see his oncologist at the end of this month for labs, but his blood work was normal up until they found his tumor incidentally. We see his surgical oncologist at the end of September and will have a CT scan with contrast then to look for tumors.
Anyone have any info to share on these new issues that have arisen? I know that depression could be the cause of his unwillingness to eat. The bm and urination increase is new though as is his eratic glucose levels.
Any help you can give would be greatly appreciated.
Thanks so much,
My 67 year old husband had 6 months of gem/cis chemo and the side effects were minimal. He lost some hair in terms of thickness and lost his sense of taste, sticking to a few meals that he enjoyed like turkey, stuffing and mashed potatoes. Every week we celebrated a new Thanksgiving. He now is experiencing some chemo brain as far as memory and word retrieval, but a year after finishing his chemo regimen, he is volunteering at City of Hope, welcoming new patients.
In my opinion, don't let the possible side effects stop you from trying chemo. Everyone is different, i know, but we are thankful that John's reaction was minimal.
Hello Imcherry. You have definitely come to the right place. There are so many knowledgeable and caring people in here who will give you the facts and also share their hearts with you. The most important thing, I have found, is to keep positive. I know it's hard at times but it is so necessary for your long term plan.
Sending positive thoughts and energy that your chemo goes well and that side effects are minimal. My husband did 6 months on gem/cis and his only complaint was that good tasted funny.
As Lainy said, read up and become informed.
You can do this.
So glad to hear that you are adapting well with Orville. I found mine fascinating (weird, I know) and was mesmerized by the bubbles etc. after a shower when I would "air dry". You can get so many products from different manufacturers, free for the asking, and one great gift was a small backpack type thing to carry all supplies. I found that experimenting with different supplies was beneficial because my skin got sensitive with the little square sponges that get rid of glues, etc. Also, remember to get a card that you have an ostomy so that you can carry water and cleaning supplies on a plane.Who knew? there are so many videos on You Tube about care and management...when I was housebound and bored I would watch them. Bless their hearts, trying to help and being so open with their lives.
All the best to you Lainy...and oh yeah, stay away from the broccoli and cabbage. Gives you enough gas to heat a home in the frozen tundra.
Hello Lainy, so glad that your surgery went well and that you are on the road to recovery. I've gotta tell you that having an ostomy bag scared the heck out of me when I perforated my colon in 2012. I very quickly joined an online discussion board like this one and they were marvelously supportive. The important thing was to experiment with the different apparatus and find the right products for you. I preferred the Hollister products and the smaller bags, opting to change them more often instead of draining them. Look on Amazon for the "pink tape" that is so hard to find. At times you may want to tape around the edges of the mantle, especially if you're going out or trying new foods. Tape generally irritated my skin after a while but using "pink tape" was a God send. It has zinc oxide in it, so no irritation. Keep a food journal as well. Record what you eat and how your body reacts. Stay away from gassy foods. There are plenty of online articles about which foods you should eat. Your ostomy nurse will be a great help here too.I know it sounds weird, but in some cases, an ostomy was a lot easier than a "normal" procedure. Just carry a spare set of clothes and plenty of supplies with you at all time. It's a piece of cake...you got this.
Feel free to contact me with any questions.
I am so happy that you are up and walking and giving us a report so soon. Great news about no additional cancer.
I'm sorry to hear that your dad had a bit of a set back with the fistula that they found. Thank goodness it was found so that a course of treatment can be planned. There is a lot of information on here and as Marions said, you will be able to search for specific information through that function.
The reason I have written, after reading your story, is to give you hope. Today is the one year anniversary of my husband's surgery to remove a large tumor and 55% of his liver and surrounding lymph glands. He has done well and now volunteers at the City of Hope where his doctors have worked miracles on him and so many others. John's gift is to provide compassion to new patients as he escorts them to their first lab and doctor appointments. They find hope in his story of being so sick and now giving back by helping those who are in the position we were in over a year ago. His surgeon wrote him a brief email yesterday, thanking him for helping his new patients and all of those who walk through the doors of the medical campus. What a blessing it was to find him.
You will have some setbacks throughout your journey, but keeping a positive attitude and maintaining hope are critical. The people on this forum helped me get through some very difficult times a year ago when I was in your shoes.
God bless your dad, mom and your whole family as you progress in your treatment. May God also bless those doctors to whom you have placed your trust... theirs is a difficult job.
How blessed you are to have Teddy visit you. There is no doubt that he is still helping you from afar. I believe too my friend. We went to our beloved labyrinth today to plant some more flowers. After the planting was done, I rested in the center and as I now love to do, took some pictures. When I got home I looked at them and saw about 10 orbs in this photo, mostly above the Guardian Angel statue. I was in such a peaceful state.
Feeling very blessed and happy that Teddy danced you to sleep.
Here's the picture:
It's easier to see the orbs on an iPhone than a computer. You can enlarge sections on a smart phone.
Posts found: 1 to 25 of 96