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Congrats on one year Julie. Red Robin, McDonald's, or Denney's...it's all about celebrating with family. I will keep you in my thoughts and prayers for a positive report on Friday.
Duke, I have tried to post an avatar picture in the past. I browse, upload and then I get nothing. I'm usually pretty computer savvy but had a mental block I guess with this small endeavor. I did post the picture on the Facebook cholangiocarcinoma page and many people responded or liked it. I'm not sure how many of you are on Facebook or are a member of that group.
By the way, John's MRI and CT scans, from brain to pelvis, came back clear. I had such a sense of calm going in to get the results. I know that, at this point, there is another purpose for him making it through his difficult surgery and chemo.
Marion, it's up to you if you'd like to remind Rick again. I know that people seem to be inspired by the picture.
Thank you for your interest.
Thank you Marion. I sent the picture to "Iowagirl" and she was inspired by it as well. I would love to share it. Could you tell me how, or can I send it to you, as a moderator?
Thank you Marion, Melinda B and everyone for your positive energy. I will keep you all posted.
Not sure how to post a picture on this forum. Message me on my facebook page, Melinda LaVenture Aldrian, and I'll send it to you. Or use my email address: firstname.lastname@example.org
It is incredibly inspirational. I have had several people who have experience with angel orbs contact me about the image.
I hope this is ok on this board. I don't want to get in trouble using my email or fb contact.
thanks for your prayers for positive results. mri of brain today as well as ct of chest. tomorrow is ct of abdomen and pelvis. results on wednesday.
Hello CC Warriors! Thank you so much for your support and positive energy and thoughts....oh and for crossing everything possible on a body to bring good JUJU.
Lainy...great idea to just be forthright when talking with others. I'm sure that friends who offer help with word retrieval are put more at ease knowing that it's ok to just say the word that you were struggling to find. John's doctor is working hard to find the correct meds to regain chemical balance in the brain after surgery and chemo. We had an adjustment yesterday and today was the first "great day" in a long time. Hoping it's not just a placebo effect, but I'll even take that and hope it continues.
Hercules...What encouraging words knowing that you are 9 years out from a resection. As far as the cannabis, John got good results from Marinol (synthetic mj) and his surgeon suggested that he try the real deal for appetite and pain. We went to a clinic and spoke to the folks there but haven't pulled the trigger yet. I think John's being an ex Jesuit, may need a bit more persuading. I appreciate your suggestion tho and am keeping an open mind.
Julie T...You are absolutely right in that not being able to keep a thought or process as well as before. That is what really bothers John as well. Based on all of your comments, we had a great talk while walking around the gardens at City of Hope yesterday where we attended Ash Wednesday mass. You're right that whatever is going to be his new normal does not diminish the person that he is. It is what it is.
Marion...thank you so much for your words of support. You're right...surgery and chemo is such an invasion on your body and we just have to accept that each day is a gift and we are blessed to wake up each day and give thanks for all that we have been given.
Gavin...thanks for your well wishes from Scotland. You are always so supportive and I appreciate your contributing your crossed digits and positive thoughts as well.
John and I prayed and meditated at a labyrinth last Thursday and again today. I took pictures of him as he meditated and there was a beam of light enveloping him as he prayed. No doubt, he was inspired by this image and given hope. I wish I could share it with you... It is an incredible picture.
Will let you know how his scan goes on Monday...results with oncologist on Wednesday, then meeting with his surgeon on March 2 to review results. I love his surgeon. He wants to stay closely involved for at least three years he said. what a blessing.
thank you all
Hi all. I could use some positive thoughts and energy for the coming days as we head into our 6 month scan next Monday. My husband was diagnosed in April, 2014, had 55% resected in May, and then followed with 6 months of gem/cis. At his three month scan, they were unable to use a contrast as his creatinine level was off due to dehydration, but what they did see looked clear.
While John is not that apprehensive about the scan in particular, he has been plagued with incredible "foggy brain" since his chemo that has let to a dark depression. We are seeing both a counselor for individual therapy every 10 days as well as a psychiatrist every month to get the meds right so that the chemical imbalance in his brain might be righted.
I know that stress is so bad for the body and as a diabetic and heart patient, I worry about the toll the constant stress is taking on his body. I have posted before about our worries with chemo brain and how long it takes before it fades away. His oncologist says that sometimes it never goes away. I guess I just needed to vent and ask for your thoughts and prayers for a) good results on his upcoming scan, and b) some relief from the anxiety and depression that he is suffering from on a daily basis.
Thank you so much for your work here in supporting cancer patients and their families. I appreciate you all so very much and wish you well as well.
I am so sorry Teresa. I have no words that will make the hurt go away. All I do know is that your mom was blessed, as you were, to be able to spend time with each other, to smile, laugh and share stories. Sending positive energy your way.
Dear Wensdi, I am so sorry to hear about your son's diagnosis. This is a great forum for advice and support. I hope that you will receive comfort and a variety of ideas here. While UCI is a great facility, you may want to also look at City of Hope in Duarte, CA. It's in the San Gabriel Valley. I know that they do take patients that do not have insurance. They have been incredible in treating my husband's cc and everyone that works/volunteers there is so positive and welcoming. City of Hope also has Dr. Yuman Fong as the chief of surgery. He is internationally known and very well respected. Dr. Singh is my husband's surgeon and we could not be more pleased. He is so reassuring and patient with all of our questions. He was the chief of surgery until Dr. Fong arrived from Sloan Kettering in NY.
Please check into getting a second opinion there. You wont be disappointed by their compassion and knowledge of cc and all cancers.
I will include your son and you in my prayers and hope that you will continue to reach out to the many wonderful people in this forum.
I'm so sorry Sammi. What a blessing to be able to go home to be surrounded with love and care. Sending positive energy and prayers for strength.
Tom and Ben...what a blessing you have been to each other and to the rest of us who have received messages of hope from you over the years. I am glad that you will be at home and that you are at peace with your difficult decision. I will include you in my prayers at Midnight Mass tonight.
Love and strength to you both.
I saw that...pretty incredible. I believe that he might be on to something. I hope he is on to something.
Thanks for sharing that. Teddy sure seems like he was such a caring and compassionate man.
What a blessing to all that had him as part of their lives.
Beautiful and inspiring words. We can all learn by what you have shared, that we have so much for which to give thanks...
Not jumping the gun is definitely easier said than done, but know that there are many people sending positive thoughts, energy and prayer to you. I think all of us have been there...over one hurdle and faced with another. I try to focus on what I can control, and that is getting the very most out of each day. Yup, I have bad days where I get discouraged. Both my husband and I tend to perseverate on the what ifs. when that happens, I usually binge watch mindless Netflix shows, just to get through that day and on to a better day tomorrow. LOL, works for me. John works in the yard to keep his mind occupied. Lainy's sharing of Teddy's thought, "Now we know what's wrong, let's fix it" is a perfect attitude to have.
You are not alone, Porter. The folks on this discussion board have been very comforting to me over the months. Hopefully you will find the messages not only supportive, but comforting.
Let tomorrow go, enjoy the present and move toward a new day...
Thanks for sharing your story Mike. It is truly inspirational to so many families on these boards. Please keep us posted as you continue your journey. Continued success in the coming months.
My husband and I drive an hour to get to City of Hope for infusion and care from our wonderful doctors. Yes, we have Loma Linda, a wonderful hospital, close by but opted to go where they treat many more cases of cc. We tend to make a day of it, often getting a nice dinner after while the steroids he receive improve his appetite. Some of our best conversations occur during our drive to and from. I guess I would be frustrated as well, but my suggestion is to go where you feel comfortable with your doctor and where they have much more experience treating this monster of a cancer. Staying positive is critical to getting through this journey...go where your heart tells you to go.
My husband has diabetes, has had a quadruple bypass and a year before his diagnosis, and had a stent put in the "widow maker" vein in his heart a year before his diagnosis. He was on Crestor for many years but discontinued because of side effects (neuropathy). Put back on prior to his cc diagnosis. John had no symptoms other than weight loss, but he was experiencing major stress/depression since he retired two years ago. He was experiencing some forgetfulness/memory issues prior to retiring...thought it was due to the anesthesia from surgery. I know that stress is deadly to your body and often wonder if that compromised his immune system.
He cardiologist told him last month that he has certainly beaten the odds with all the major traumas his body has been through. Praying that his luck holds out and that I am still giving you updates for many years.
You are certainly an inspiration to the rest of us just beginning our journeys. Congratulations for your healthy immune system and your continued success in fighting this ugly disease.
Please keep posting...you give me such hope.
I feel the same way about this Christmas...receiving a great scan is the best incentive to celebrate and give thanks. When we saw our surgeon on Monday, John gave him a card with a gift card in it, just to thank him for his outstanding work and support over the months. I came home from shopping this morning and John said that his surgeon called him to thank HIM for making his day. John thought at first there was bad news to be delivered, but Dr. Singh just wanted John to know how touched he was by John's inscription. Wow is all I can say.
I just found out that both of our kids will make it home for Christmas (from Vegas and DC) and that all my 3 siblings will also be with us to celebrate. I too feel like celebrating and decorating the house to welcome our two precious grand kids and family members. Going out to buy our tree and some poinsettias right now.
Yes, let's keep in touch.
Merriest of Christmases,
Hi Julie. We met with John's surgeon yesterday and he indicated that for the first year, he wants to do a CT scan every three months. The second year, her will extend it to every four months, and after that every 6 months. When I told him that our oncologist thought that scans could be done further apart and just rely on lab work, he said that John (and you) are among the 20% that had no indication from tumor markers or elevated levels on blood work prior to diagnosis, and that we needed to remind our oncologist about that should he want to just go by lab results.
We are lucky that Dr. Singh said that he likes to personally stay in touch with his surgical patients for one year following resections and chemo. Most surgeons turn their patients over to the oncologist who rely on the radiologists reports following a ct scan. He said that since he was "in there", he knows first hand what shadows might be or where scar tissue is. We love Dr. Singh at City of Hope and trust his judgement immensely.
John's liver has fully regrown and he has a clean bill of health until February 23 when the next scan is complete. With regards to a MRI vs CT Scan with contrast, Dr. Singh indicated that with this type of cancer, the ct scan with contrast gives a more complete view of microscopic changes, unlike other scans or images.
After drinking a ton of water since his last creatinine test, John's levels were back within normal range and the thinking is that he just let himself get dehydrated prior to the scan on Nov. 24.
So, overall, good news for this visit and peace of mind for the holidays, where my entire family will gather from all parts of the country. First time in many years that we are going to be all together.
Continued best wishes to you...keep singing my favorite Christmas hymn at every opportunity. I love Silent Night as even during the depths of my mom's Alzheimers, she recognized and tried to sing along with this one song at mass. Just beautiful.
Hi Julie, I have been following you as your story and my husbands are eerily similar. Diagnosed with stage 4 in April, resection in May and finished up with six months of gem/Cis on November 5. Clear margins after surgery. Had a ct scan on Nov 24 but couldn't use contrast as creatinine was 1.66. Scan looked clear but will redo it in 3 months. We saw the oncologist last Wednesday, the 26, and he said that John might have been dehydrated to cause bad kidney functioning level. He has been drinking a ton if fluids since then as we have an appt on Monday, with our surgeon and he will recheck labs, especially the creatinine. We will be referred to a nephrologist if kidney levels are still high, knowing that cisplatin is so hard on the kidneys.
Anyway, their original plan was to do a ct every 6 months as well, with lab work each month. This made me nervous since his lab work was all normal prior to incidental finding of cc tumor. I will ask about having a ct sooner as well but not sure that they will ok it. At least we will have one more in 3 months, using contrast, to show closer detail which they couldn't get this time.
I'll keep you posted tho. We have such similar stories, it's uncanny. I stressed out prior to the scan too so I know how you feel. Scanxiety is very real and alive in so cal.
What were some of the other burning questions on your list. Maybe I can ask Dr. Singh at City of Hope and see what he says, since we're so similar.
Glad that your scan was clear too. Keep drinking water. 1.3 isn't too far above normal. Hopefully you can just hydrate more before your next labs.
Hope my post is mostly legible. Writing it in a car on my iPhone, and wanted to respond to you as soon as I could.
God Bless you, and all the posters, in this journey.
wow...I believe those things and that Teddy is ok with the new chapter of your life. People who love you want you to be happy...that includes your beloved Teddy.
I'm definitely gonna use it. Keep em coming
Porter, I totally agree with your questions and what you are feeling after resection and chemo. My husband has just finished chemo after his surgery and feels exactly the same way. He is emotionally lost without his weekly trips to City of Hope, searching for support and information about his new normal. When does taste come back? chemo brain leave? food? CT scans more often or rely on lab work when his labs were normal pre diagnosis. Odds of cc returning, etc....
Thanks for verbalizing what we have been scratching our heads over for the past few weeks.
hey Duke...give yourself a wee bit more credit. As a former elementary school principal, I'd say that your humor was at least fifth grade!
Those dang mice must've found something comforting in that snow blower...enough to take up residence and return often, after a large meal no doubt.
Moral of the story is NEVER LEAVE YOUR CHOKE FLAPPER UNATTENDED.
And there you have it. Words to live by.
Thanks for the great story.
Posts found: 1 to 25 of 66