Forum Replies Created
Hi Lainy –
Thanks for your concern! I do have an excellent GI doctor and to date he has performed 12 ERCPs and replaced each time plastic stents without any issue. It is just at this stage he cannot assist any further because there is too much “sludge” in the biliary tree to be cleared by stents and to lower bilirubin levels. They also consulted interventional radiologists to see if they could clear out the area and they said they had no options to help.
Since diagnosis, we’ve also gotten 3 other second opinions besides my doctors here and NY Presbyterian, and at this point, none have been helpful and have just proven frustrating (time, money, disappointment).
As for the leakage from my ascites Pleurx drain, I will continue to pursue a route to stop or reduce it with the interventional radiologists who placed the drain. Currently, it’s very limiting to my ability to leave the house. I’ve had several humorous incidents in public in the last few weeks.
Hi Marion –
I’m sorry for the delay in responding. I was hospitalized because my stents are clogged and the GI doctors and Interventional Radiologists here cannot reduce my Bilirubin levels. As a result, I am accumulating ascites and had to have a catheter installed for drainage at home. unfortunately, the catheter site leaks all time!!! ugh
I have sent reports and scan updates to NY Presbyterian, but they do not have any suggestions so far. My doctors here have just recommended home health nurses and to select a hospice. My husband and I are still optimistic that things will reverse, but we also have to realistic.
I hope all is well with you! And thank you for all your help over the past year and half!
Hi – I’m not sure how helpful this will be, but here goes.
I had 4 treatments of TACE. The first was in May 2014 to one side of the liver, and then June 2014 to the other side of the liver. There was a month break. My results were very good and I tolerated the treatments well , and so, my interventional radiologist wanted to repeat the procedures. So, we repeated in August 2014 and September 2014. My last treatment in September, however, proved to be more than my liver could handle and I experienced infections and symptoms of acute liver failure which resolved in October.
I am not familiar with the acronym CBRT, so I cannot comment. I did also have radiation treatment to the bile duct area in April.
I just wanted to thank you for this wonderful opportunity for me and my family. I truly appreciated it!
I had paracentesis done about 3 -4 times. The first time I requested it because I looked about 9 months pregnant (was not), had trouble getting out of bed, and slight shortness of breath after bending down or doing chores. They removed close to 4-5 liters of fluid each time. But I was never drained “dry” and always had some fluid remain. It is pretty painless (just don’t look at the needle) and you’ll have some gas afterwards.
However, for those two months, the ascites just kept coming back, which I was warned about, and I needed to repeat the procedure. Eventually, the ascites just stopped, much to my relief.
Hope this might help.
That was my dosage from March to September (1500 mg 2x daily/14 days on/7 days off). I am 5’9″ 150 lbs and 33 years old. My only symptoms were fatigue, some slight numbness in my feet, and stomach discomfort (which was managed with OTC Nexium and Rolaids). In September, the stomach discomfort got worse, and I was told to take a break from Xeloda.
Hi Vicki –
Welcome to the site, and you will find tons of helpful information here. And best of luck at MD Anderson in September!!
Regarding the pain in the rib cage you mentioned, I have been dealing with a similar pain on and off since diagnosis. I would recommend you mention this to your treating physicians because it potentially could be metastasis to the bone (worst case). Most likely it won’t be, but an MRI or PET scan would rule it out. In my case, my treating physicians ruled metastasis to the bone with an MRI, and then told me it was most likely inflammation pushing up against the rib cage. I use ice packs on my rib cage and/or take ibuprofen to help with the inflammation. However, I’m sure your doctors will have better advice than what I can provide!
Hope you find some relief.
Hi Marion –
At diagnosis in December 2013, I was told it was unresectable due to lymph node involvement. We sought opinions from two other facilities, and those surgeons concurred. As you recalled, I started Gem/Cis for 3 mos with poor results.
In April I had radiation to the tumor outside the liver. The tumor showed shrinkage afterwards. They also started me on Xeloda (3,000 mg a day), which I have been on ever since.
In May, I was referred to an interventional radiologist and had three chemo embolizations to the liver (each one month apart), and I have one more to go in September. My response to the embolizations has been very good with significant tumor death in the liver. However, my latest PET scan still shows “active” lymph nodes outside the liver.
So, the next step will be more systemic chemo to keep the lymph nodes in check. My oncologist isn’t sure which drug though — he says there no clear cut option. This is very frustrating.
I am now told if I can keep the cancer growth stable, there is a small chance they may consider a surgery in the future (they have yet to put a metal stent in, which I think is a good sign). I am so very hopeful.
I don’t know how others handle years of treatment! I am tired!
Hi – I wonder if I ignored potential early signs – although not shingles, per se.
About a year and a half prior to diagnosis, I started experience intense itching all over that lasted about 4 weeks and drove me nuts. At first I actually thought it was about a bed bug infestation, until a pest control guy confirmed I was completely wrong, especially since my husband had no symptoms. Coincidentally, we moved out of state around the time the itching went away – so I chalked it up to some type of regional allergy.
About a year later, the itching returned but both my dermatologist and ob/gyn told me it was probably post-partum hormone related as I had given birth about six weeks prior.
Four months later, the itching returned but with jaundice. At that time, I was diagnosed at stage IV and unresectable.
I have a lot of would’ve/could’ve/should’ve regrets, but that doesn’t help much these days. My husband is a physician and he didn’t put the clues together either.
Judy – Thanks so much for the info! We aren’t seeing Dr. Kemeny, but heard similar resistance to being out of state with the pump. Your insight is really invaluable to me while weighing my options!
I’m sorry, but I’ve never heard of Ground Glass Opacity. However, I was curious if your husband was cleared to fly and what the outcome of his scans were.
Coincidentally, I was at MSK yesterday for a consultation/second opinion. They mentioned the hepatic pump as an option in my case (32 yr old w unresectable with mets to liver and possible lymph nodes), but said they didn’t think it was a great option for me since I live out of state and they don’t have anyone to maintain it near me. They otherwise did not have very optimistic options for me besides continuing different chemo (I did not respond to Gem/Cis).
I’d love to hear about your experiences with the pump and if it is working (read some of your older posts) and with traveling to MSK for care of the pump.
I hope all is well and that your husband finds some relief soon.
I’ve been doing similar research looking for where to go for second opinions, and I found out Dr Fong from Memorial Sloan Kettering is moving to LA to City of Hope. I’ve never met him but have heard he is a wonderful surgeon that has seen a lot of cholangiocarcinoma. I imagine that he would have an opinion that would be useful even in unresectable cases.