my mom was 1st prognosed with this cholangiocarcinoma back in 2005.
She had chemo and then radiation the first 2 years...since then it has been Stable. She has been doing great other than the occasional fever and chills. She had ercp to replace Stent every 5 months. ,but other than that she has been strong for past 6 years... until june1 st when she started retaining lots of fluid in belly. Her Gyn had told her this past Jan that he saw a cyst in ovaries that was being checked every few months. It grew in size around April , he did blood work and told us that it looked suspicious of ovarian cancer. We spoke with mom's oncologist, who told us this ascitis fluid she has been retaining has nothing to do with ovaries, that it may be recurring cholangio ..my mom has since done 7 Parasentisis .each time they remove 5 liters of fluid from her. It has become chylous in the past month. Dr says this is blockage somewhere or it may be scarred tissue from radiation done in 2006.
Mom has been hospitalized for weeks at a time these past 3 months. (june-August now) With infections treated with iv antibiotics. She has been put through petscan, catscans, X-rays,ultrasounds....she also has fluid in lungs which causes her to cough constantly, has lost lots of weight, and her strength and spirit is nowhere near what it was only months ago...it breaks my heart to see her like this. It's like this is all starting over again...but only worse now.. We have since gone to doctors in mass general and layhee clinic..one told us that this was the beginning of the end and she may only have few months left( as we were told in 2005, that she only had 3-6 months to live). The other doctor was more uplifting telling us that her body could reverse the ascitis, he suggested do a laprascope through stomach.. since we are in hospital now.( she was admitted to ER with 106 temp and chills, 3weeks ago )
Doctors dont know where leak is coming from, so these past 2 weeks she was put on tpn to bring her albumin levels back up and mailnly to manage the ascitis fluid . we were told that in order to do the laproscopy, her belly should not have any fluid in it and the only way to rid the fluid from her belly was to do the tpn. so she did, her ascitis fluid is now yellow and not white (chylous) and they only removed 1.5 liters 2 days ago as opposed to the average 5 liters, as soon as fluid was removed, but her belly still looks like she is carrying triplets. she is scheduled for another parasentisis today.
the doctors now tell us of another procedure called lymphoscintography, she is scheduled to do this tomorrow.this is supposed to locate the leak in lymphatic vessell, they will try to seal it and do a laproscope next week. looking for anyone who has had this done or someone in simalar situation..please ...
she is in alot of pain, hasnt slept in days because of constant cough and sometimes even chokes on her fluid,her feet have become swollen, nausea and almost no appetite...these symptoms started only weeks ago...
im getting really scared, been hearing less and less encouraging words from doctors. so far havent heard of patients in similar situation.
May God Bless all of you who are fighting cancer as well as your families, may God give you strength to get through this. Stay strong..stay positive
Are there any procedures other than scope to rid her body of the ascitis...would really appreciate any help/ advice on treatments...thanks so much. God bless