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Dear NolaPat,
I had three large incisional hernias which I had repaired in April,. I have the ability to be a little more active and pain has decreased but scar tissue remains and sometimes that causes pain for me.
Hugs
LisaDear Nola,
Congratulations on the STABLE report! I will be keeping you and Neil in my thoughts and prayers for continued good news and successful hernia repair! Take care….MelindaNola….I share your happiness…..excellent report. So glad that Neil can have his hernia operation and looking forward to feeling better all the way around.
Hugs,
MarionReturned late last night from MD Anderson. Neil’s scans show stability of disease even with being off chemo for six weeks. His tumor markers were also good. White counts and platelets remain down. They recommended more time off chemo and gave approval for hernia surgery. We were very happy with this report!
Nola….really good news regarding the successful pain control. Can’t wait to read next week’s report.
Fingers and toes are crossed for a positive meeting.
Hugs,
MarionHi NolaPat,
Welcome to the site. Sorry that you had to find us here and I am sorry to hear about your husband and what he is experiencing right now. Glad that you have joined us all here as you’re in the right place for support and help and know that you will get loads from everyone here.
I missed your post when you first posted, my apologies for that. My dad too had PDT for his CC with a metal stent placed back in 2008 after his diagnosis and I wrote a bit about that here on the site. Here are a few links to my postings if you want to read them.
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=1940
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=1959
I so hope that Neil’s med team can get to grips with the pain, no one should have to suffer through pain and pain can be controlled. How long ago did Neil have the PDT? My dad had the after effects of it for some time re sensitivity to light and all of that, I’m sure that you both were warned about that.
Hope that the next scans show some good news for you both and please let us know how they go. We are all here for you and we care.
My best wishes to you and Neil,
Gavin
Thanks so much for caring and it was good to read of another’s experience with PDT. Thanks for the link! I don’t know if the esophageal varices are new or just newly discovered. They have not been mentioned on previous ct scans, but don’t know if they would show up. Neil is having repeat scans next week so will see. We seem to be eliminating the causes of pain and it seems to be coming down to scar tissue. He still has very large abdominal hernias and is really wanting to have these surgically repaired. Will discuss with onc next week about whether this is recommended. It is a quality of life issue for him and I will support his decision although I know there are risks and he will have to be off chemo to recover from surgery. He tried the pain patch last night and tolerated it well. Had some breakthrough pain which we had meds for. So I think we have a plan for addressing pain.
NolaPat….Rohrbork had mentioned pain following PDT treatment. Perhaps you find something similar in his story. Here is the link:
http://www.cholangiocarcinoma.org/punbb/search.php?action=show_user_posts&user_id=8920
I don’t believe that anyone should suffer with pain. Don’t hold back from addressing it with the doctor. With my husband, I made sure to stay on top of it and always had extra medication for breakthrough pain. It takes some time to get it right – trial and error.
Are the Esophageal varices a new development or is watched by the physicians?
Hoping and wishing for the paracenthesis to reduce your husbands pressure and lead to further reduction of pain.
Please keep us posted. We care.
Hugs,
MarionMarion’s, he has tried enzymes. I think they helped with the gas he seems to get from everything he eats. Problems with fatty foods seems to vary, maybe on how well his stent is working at the time. He had an EGD and colonoscopy today to try and determine source of abdominal pain. The doctor found evidence of his portal hypertension in esophageal varies, but no colitis. No real source of pain discovered, but she did prescribe a pain patch for time released pain control. He has a paracenthesis scheduled for tomorrow to drain ascites. Hopefully this will make him more comfortable also. The ascites is not new, but recently worse. We go to MDAnderson next week for labs and scans. His bilirubin is down since PDT but he does not feel any better – and we had such high hopes for that treatment!
NolaPat…..wondering, have you used enzymes prior to each meal. Also, does your husband have pain after a particularly heavy meal or one that contains fat? And the swelling in his abdomen, is this a new development?
BTW: you are so right. This cancer can be very isolating for the reasons mentioned by you. Glad you are here amongst those who know and understand.
Hugs,
MarionDear NolaPat, guess what? My husband had the CC I have Colitis. I have never had a CT for it but every 6 months get a colonoscopy. It’s been a miserable ride for almost 4 years now. I just found out that a woman has 21-22 ft. of colon and mine was ulcerated except for 10″. This last year I went on Remicade infusions along with a RX, Imuran. I am healed except for 2″ and that is worse than when it was the whole colon. I NEVER had pain but do get very bloated. At any rate I am glad to hear Neil is getting a colonoscopy. Guess it’s not enough to have CC got to get something else with it!!! Please let us know how the tests go.
Thanks for all the kind words. Although we believe we have a great medical team, I just realized we do know one single other person with this particular disease and how isolated we have been. To answer the questions, a year ago Neil developed colitis after several months of Xeloda. The colitis was confirmed by Ct scan and he was taken off the Xeloda. Since that time he has had some abdominal pain on and off, usually associated with meals, and we and the doctors attributed it to lingering intestinal inflammation that was a side effect of chemo. On our last trip to MDAnderson it was decided to give him a 6 week break from chemo as his scans were good, Ca 19-9 was normal, and liver functions were stable to see if the pain got better. Well the 6 weeks are nearly up and the pain is not improved. We saw our GI doc who because the pain is very localized and worse after eating, believes it may be scar tissue from the attempted liver resection and has scheduled an EGD and colonoscopy for Wed. Neil has pain meds but a discussion of pain control is definitely on our list for our next onc visit. He also seems to have more abdominal swelling so have called his onc office about scheduling a paracenthesis. I am hoping we will have some answers Wed after the procedures about what is causing this and how it can be treated.
Dear NolaPat,
Ditto from me. A warm welcome and be assured you will be glad you are here. I too am concerned about the pain and feel it needs to be addressed. I’m thinking you may also want to get a second opinion. Let us know how things are progressing. We care.
Love & Hugs,
DarlaNola….a quick welcome from me as well. I too am concerned about the pain your husband is experiencing. Can you share with us a bit more? When did it start? Is it increasing? Is it constant or occasionally only?
Hugs,
MarionDear NolaPat, welcome to the best place to be for CC support and we have the most fabulous family in the world. I am so sorry that your husband is having pain and am wondering if you have related this to his ONC. There are so many pain RX available. Try to read up on CC when you can as knowledge is our most important tool to work with. Also if you have a question about anything just type a word or 2 in the Search engine above and posts will pop up on that subject. Can’t find what you are looking for? We have plenty of very smart people on here waiting to help. I am also sending you some links you may want to take a look at. Please keep us update on your husband as we truly care.
http://cholangiocarcinoma.org/the-disease/newly-diagnosed/
Free complimentary Book or e-mail download:
http://cholangiocarcinoma.org/news/foundation-resources/
Biliary drainage – stent information card
http://cholangiocarcinoma.org/biliary-emergency-information-card/
Register for a CURE
The International Cholangiocarcinoma Registry
http://cholangiocarcinoma.org/professionals/research/patient-registry/
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