Forum Replies Created
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.
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.
Melinda AAugust 25, 2015 at 3:57 am in reply to: Can’t find previous line of topic, so I thought I’d start a new one #89515
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.
MelindaAugust 25, 2015 at 3:41 am in reply to: Sharing my story and hoping to find someone with same #89508
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.”
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.