lainy
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Dear Scott, my favorite hillbilly! I wish there was something I could do or say but sometimes we just have to hang in and hang on. When Teddy had his pic it was only while he was in the hospital. You never know how strong you are until “strong” is the only choice you have! Like Gavin said, not too much going on but I sure do miss you!
Dear MGG, Welcome to the best place to be for CC support along with our remarkable family. I can’t help on your question but wanted to say you will receive a ton of support here as we are all family. You might go to our Search engine at the top of the page and type in Celiac and see if any posts appear. I am also posting a site for you that you may find helpful. Please keep us updated on your husband’s progress.
http://cholangiocarcinoma.org/newly-dx/Dear Jennifer, WELCOME to our remarkable family and the best place to be for CC support. You are doing all the right things for your Mom and yes other opinions are extremely important. We have a search engine at the top of the page and if you click on it with individual names different posts may appear on that Doctor. Best of luck to Mom and please keep us posted on her progress. Below is a site you may find helpful:
http://cholangiocarcinoma.org/newly-dx/
WOW! Thanks for this Gav, Israel also played a hand in Keytruda. I am so glad new treatments are popping up, this is what we have been wishing for. Everyone, hang in and hang on new developments are around the corner!
Dear Tiah, FRUSTRATION, thy name is Cholangio! Talk about a roller coaster ride, I am so sorry to read this but hope the Doctor can get in and do the deed very soon! Sometimes I think these things happen because the timing is off. Let’s hope for better news from the DOC and sending Mum my very best!
David the soreness will go away soon. The good news is you still have options for treatment. Will be interesting to see what the ONC comes up with. Hang in and hang on and wishing you the very best!
Oh, Matt, what great news! Miracles do happen here, I am over the moon for you! YIPPEE followed by cartwheels! It just does not get any better than this! Bless you and your family.
Hi, Pat, what a good and kind person you are! I so sympathize with your friend. This is not so far fetched. I had my Colectomy last May. Started getting terrible pain on the underside of the bladder like a knife cutting me and after going back to the GI Surgeon and two diff. Urologists I got the news that everything else was good but apparently I got “nerve damage” during surgery. This happens a lot and cannot be helped and that nerve damage, no matter what surgery, can happen. At least I now know. It cannot be seen or detected and the nerves can take a year or longer to heal. The pain is like I am being cut. They can try a new treatment using Botox but I said if I use Botox it will be at the other end! I would not accept unconcerned DOCs and if need be I would go to ER. Perhaps even a mild dose of a pain reliever could help.
P.S. I can’t do Barley either in any form. Very hard on the tummy. Best of luck and let us know what happens. Tell her she has a whole bevy of cheerleaders here.Catherine, revving up to do cartwheels! What great news, really doesn’t get much better than this. YIPPEE!
Oh, Irish, I am so sorry to read this. My husband had a Whipple back in the day, it did buy him 5 years. We went to visit his Surgeon to say thank you for the 5 years when we were near the end, and the surgeon said, “Salvatore, I never expected you to get a year”. Moral to the story is, DO NOT listen to time frames especially when new treatments and trials are popping up all the time. That is the game, to keep yourself going for that treatment round the corner that may help your Dad. AND far from least, celebrate each day and make more loving memories. Have you thought about another opinion?
Dear Sherry, eating becomes a major problem as no one has an appetite with all they are going through. I would suggest trying some nutritional drinks. Teddy really liked Carnation Instant Breakfast, the vanilla and I would blend in a banana. You can drink this in place of all meals or with a meal. Try more comfort foods like homemade soup, pasta, omelets, pudding, jello, and only put small amounts on the plate. When an ill person sees a large amount of food it appears insurmountable. Best of luck and glad he is almost done with his chemo.
Curious, have any scans or LABS been taken?Dear Melissa, we call that feeling before a Scan result….Scanxiety. My husband used to look at it this way, “Now we know what the problem is, let’s fix it!”. Waiting to hear your results. Be strong!
Dear Melissa, Welcome to the best place to be for CC support and welcome to our remarkable family. I feel it is a very wise thing you are doing by lining up choices where you may want to get more opinions. The Barnes Jewish Hospital is great and I would toss in MDA in Houston, Dr. M. Javle. Of course all your tests and DX has to be complete. Where are you being tested? It is good to take one step at a time but know where others may lead. Please keep us updated as we truly care. Below is a site you may find helpful.
http://cholangiocarcinoma.org/newly-dx/
Hi again! My husband was on Morphine but started out much higher. If the Tylenol 3 is working that is great but if you feel it does not work well enough, never let the pain get beyond control as the longer you wait to be comfortable the harder it can be to control it. Again, let the ONC help.
Dear Brigitte, unfortunately this is very normal and goes with the territory. There is nothing wrong with asking your ONC for a little dose of something to help you through. A few years ago I went through those feelings and emotions when taking care of Teddy. My DOC put me on a low dose of Lexapro and it worked like a miracle. I had no side effects, of course everyone is different. There is no way anyone expects you to do this “cold turkey”. Please call your ONC and he/she will help you out on what may be best for you. You are a lovely package and the whole package needs to be taken care of.
