new symptoms..fewer answers…
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Paulina…….. I so much hoped for a more positive result today. Unfortunately, this cancer is very difficult to detect. The plates of scans measure 1cm therefore, anything less than that is not visible. Hence surgeons comment that the only true diagnoses are possible during surgery.
Much is on your shoulder being that you have to come to accept the severity of the situation in addition to having to explain it to your Mom. My heart goes out to you.
At present pain control is the most important issue. I would make sure not to allow your Mom to be released from the hospital unless she can be made comfortable.
Please, stay in touch. We will stand by your side.
All my best,
MarionHi,
Thanks for your compliment.
For pain control,please go to the experience forum on this web site,and look under the Pain Management blog;read about “The use of opioids” for pain control,it may provide some help in managing your mom’s pain.
Since your mom is in the hospital,Dilaudid IV by the nurses or Dilaudid PCA(your mom can control her pain better by her own using the pain button to give her a dose of Dilaudid on demand.);when she discharged by the hospital,Fentanyl patch and quick dissolved tablet can be used.If I may,surgeons excel in doing surgery,therefore they may not know about current medical intervention in treating CC like other specialists do. It is not uncommon for surgeons to say things like that as you might have the same experience back in 2005, when your mom first diagnosed CC. So don’t pay too much attention to it. I once asked a surgeon about my sister-in-law who have stage 4 CC mets to the omentum,he took a look at the CT scan report and recommended hospice care only.It was almost 9 months ago.She is on chemo treatment now and shown partial response to the Gemzar/Xeloda treatment. (that means her tumor shrinked at least >30%) and she went back to work full time this week.
That is why 2nd opinion is important.
Tell your mom everything is ok at this point;and talk to her GP for his/her opinion about the future course of treatment plans if you do not want chemo or radiation treatment.But don’t be afraid of chemo ,it is much better in terms of tumor response and control of side effects like nausea nowadays as compared to say,just 5 years ago.
BTW,How old is your mother? Age is a risk factor in determining treatment plans.
Keep in touch and we will learn from each other as well.
Thanks for your prayer.
God bless.Thank You marions,Gavin and Lainy for your positive messages!
im sorry i havent responded ..alot has happened since my last post. but it was a great feeling to read your msgs at such a low time…thanks for reaching out, you have no idea what a difference it makes..thank you for thisas for All Star..everything you wrote..you were right on the money. my mom is getting zofran for nausea and although she is very much against pain meds but is taking either vicoden or dialodid. her oncologist recommended a high protein low fat diet because of her chylous fluid, she has been on tpn iv for past 2 1/2 weeks. (she was taking lasix and spirolactone prior to being in hospital, dr took her off because of low albumin and other nutrient levels.
she had her laproscopy done today. suergeon told me she may have weeks to maybe a few months left, he said that her cholangio has matastisized..( i just don’t understand how they didn’t see this from all the tests she has done in the past month???
this pain is the most horrible feeling..i dont know what to do or what to expect, im trying to remember everyhting else the seurgon told me, but it all seems like blurr now
i dont want my mom to suffer anymore than she has (with more treatments like chemo or radiation). she has been sleeping most of night so far from the anestesia ,,,i just dont know what to tell her when she is completly awake. i dont want her to lose any hope but also dont want to lie to her…
All star, i hope you are doing well, i will pray for you as well as everyone else on here…may God bless you all, and give you strengthHi,
I am just a patient like your mom.this for your info.only. consult doctor is a MUST before any change of current treatment plans.For constant cough,you may ask the doctor to prescribe benzonatate 200mg and take it as recommended by your doctor.
For nausea ask him to prescribe Zofran ODT 4-8mg as he /she recommended,
the ODT formulation dissolved right out of the tongue for fast drug action.
It is also a good idea to get Xanax 0.5-1mg and take it at bedtime as prescribed by your doctor to help your mom relax and sleep.
For shortness of breath and adominal pain,it is related to the ascites and doctor’s advice is needed for proper treatment.Your mom’s oncologist may be right that your mom’s CC may have returned.
Chylous ascites is milky in color and rich in triglycerides which produces by the liver in general. It occurs when the lymphatic system was blocked due to traumatic injury or obstruction by tumors(ie:abdominal malignancy and cirrhosis)
In the mean time before the actual diagnosis is finalized, uptodate.com suggests a high protein and low fat diet with medium-chain triglyderides(MCT).
The ascitic fluid should be tested so that the doctor can rule out infection or portal hypertension besides malignancy.
Also up to 21 liters can be removed without fear of hemodynamic consequences for paracentesis. Lasix and aldactone diuertic should be suggested if appropriate and nutritional supplements should be suggested to maximize caloric intake for patients who have poor appetite.
God bless.Dear Paulina, welcome to our wonderful family but sorry you had to join is. What a brave lady your Mom is, she has really been through the war. I also have not heard of this although it sounds like she is in good hands. Do they have her on pain/nausea Meds? There are so many she can be taking. No one should be in that kind of pain. While I can’t be of any jelp on the problem, I just wanted you to know we care and you are not alone. Please keep us posted and be strong!
Hi Paulina,
Welcome to the site. Sorry that you had to find us all and I am very sorry to hear what your mum is going through right now. But I am glad that you have joined us all as we know what you are going through right now and you will get a load of support from us all. I had never heard of chylous ascites before and did a search here on the site and found no postings on it either. Hopefully someone else will be able to offer some thoughts on this. My dad had ascites also and he took diuretics for that, he had the swelling in his feet, ankles and also his abdomen.
Is your mum taking anything for her pain and if so what? Also, is she taking anything for her nausea? There are a lot of different meds out there for nausea and my dad went through that as well. He tried a wide variety and combinations of meds for that with differing amounts of success.
Please keep coming back here and let us know how things go with your mum. And ask as many questions as you have and we will try and do our best to help in answering them. I hope that your mums lymphoscintography goes well and I will keep my fingers crossed for success with that. We are all here for you and know what you are going through and we care.
My best wishes to you and your mum,
Gavin
Hello Paulina….I am so sorry to hear that your Mom is dealing with this rarely occurring chylous ascities. We have never seen this on this site however, I am hoping for someone to come forward and share some thoughts with you.
In the meantime I am wishing for tomorrowmy 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
Paulina
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
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