My Introduction
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mom2cmk……hang in there. We are rooting for good news following the tests. A tidal wave of good wishes are heading your way.
Hugs
MarionDear 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!
Thank you all. I say I’m likely not a candidate for surgery because I’m having sacral spine pain that seems to be compressing my spine, causing me to have loss of sensation in my legs at times. This has progressed the past week. I begged for further testing prior to GB removal bc testing showed a blockage and I was itching like crazy but docs felt it was gallstones, even though zero ever showed up on scans. I’m having a MRCP in the morning and MRI of the spine the following day so I feel the big reveal will be this week. I’ve been working on getting to this point for 3 months and now that it’s here, I’m filled with so much fear and anxiety. I will update once I get results.
Melissa,
This board has helped me so much with advice for my daughter.
I hope you get all the support you need to get your game plan together.
Thinking of you
Thanks to Lainey and Marions for replying, I don’t know what I would do without your support.
Andrea is trying to do too much and her body is just not up to it, she is also losing weight as she does not feel hungry.
On Saturday, Andrea had a temperature and so went to Christie’s to be checked over, her bloods were checked for any infection but they came back clear.
She goes to Christie’s again on Thursday to get her bloods checked to ascertain what strength her next chemo tablets will be.
Her doctor has given her E45 cream for her hands and feet.
Melissa,
I would like to welcome you to our discussion board family as well. I wouldn’t assume you are not resectable based on opinion of a medical generalist. There are many folks on this board that were told that by their community doctors/hospital staff, only to be told they are resectable by a CC expert. My husband is an example of that. Many others become resectable after achieving shrinkage via chemo. I think you are doing the right thing by seeking out a top specialist. All the best to you.
Debbie
mom…..welcome. Lainy’s suggestions are great. You may also consider Vanderbilt, as it is close to you. They are very familiar with this cancer and have a robust hepatobiliary department.
Good luck and please keep us posted.
Hugs
MarionDear 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. I’m 37 yo mother of 3 and facing a diagnosis of CC. I am in KY. Vanderbilt and Barnes Jewish are within driving distance for an initial consult but willing to travel to any location by flight. I am trying to get a game plan together (or 2 for that matter) so that I can get moving in some direction if this is my diagnosis. So my question is: how do you determine where to go? Of course, I hope that surgery is an option but assume it’s probably not in my case due to my symptoms and that it has taken 3+ months and gallbladder surgery for my doctors to look further. Thanks in advance!
Hazel…. Most everyone experiences hand and foot syndrome with Xeloda (capecitabine)
this link offers suggestions:
http://chemocare.com/chemotherapy/side-effects/handfoot-syndrome.aspxCall your doctor at once if you have a serious side effect such as:
nausea, loss of appetite, eating much less than usual, vomiting (more than once in 24 hours);
severe diarrhea (more than 4 times per day, or during the night);
bloody, black, or tarry stools;
coughing up blood or vomit that looks like coffee grounds;
fever, chills, body aches, flu symptoms, easy bruising or bleeding, white patches or sores inside your mouth or on your lips;
pale skin, feeling light-headed or short of breath, rapid heart rate, trouble concentrating;
pain, tenderness, redness, swelling, blistering, or peeling skin on your hands or feet;
swelling, rapid weight gain; or
jaundice (yellowing of the skin or eyes).Other common side effects may include:
stomach pain or upset, constipation;
tired feeling;
mild skin rash; or
numbness or tingling in your hands or feet.This is not a complete list of side effects and others may occur. As Lainy mentioned, it is best to contact the physician and report each and every side effect experienced.
Please keep us posted – we care.
Hugs
MarionDear Hazel, I would certainly let the Doctor know about Andrea’s side effects. There are lotions for her feet and hands and also Meds for Nausea and diarrhea. Unfortunately this can come with the territory. Tiredness is a given! I would call the Doctor and see what he can do for her. Wishing for her to feel much better.
Andrea has now taken 2 courses of the chemo tablets and is now experiencing nausea and diarrhoea. as well as the dry and hot skin on her hands and feet.
She is feeling very tired too, but I assume this is only to be expected.
Gavin those links are great, they seem to cover everything, I am sure Andrea will find them very useful.
She is still managing to run her business, run a home and look after her 3 kids, so she is doing very well.
Andrea has nearly completed her second course of chemo tablets.
Her skin is very dry especially on her hands and her feet and it is making it painful to walk. She is using E45 cream to try to keep them moisturised.
She says they feel like they are on fire and wonders if putting them in iced water would help
This one as well Hazel should be of use –
Gavin
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