Topic: Hi everyone

I am so blessed by finding this site.  When my mom was diagnosed December of 07 no one we knew had ever even heard of cholangiocarcinoma.  I am so thankful there is a place like this to talk. 

Our story is so similar to so many others.  My mom, who was 59 at diagnosis, looked like she was 35, very active, cooked, worked, loved to do anything fun.  She had some severe pain one day and went to the ER thinking she was having a gall bladder attack.  Sure enough, when they went in laparscopically they found the liver cancer.  I will never forget that phone call from my dad.  Our family has been changed forever.

We never asked for a prognosis.  We are Christian and like many others know that this is in His hands and we didn't want to feel like there was a countdown.  We are hopeful and trying to stay encouraged in the midst of this nightmare that came out of nowhere.  My mom, through her struggles, will look at me and say, "This is good.  We know it is.  It doesn't feel like it, or seem like it, but it is."

Her cancer certainly appeared inoperable after the first scans - she had two chemo-embolizations and we were told that she had a less than 15% chance of the tumors shrinking to an operable size.  Lo and behold, hers did.  They were amazed and scheduled her surgery.  Two weeks beforehand she had some scans done to map out their plan.  My parents received another devastating phone call - the cancer had spread.  A spot on her lung, her rib cage and her arm.  Also, they believed her lymph node was diseased.  The surgery was cancelled.

Immediately she began chemo.  Excuse my spelling, but it has been rounds of Gemsar and Cystplatin.  The cancer doesn't seem to be moving too much but she has become increasingly tired. 

I am only 28 years old and am having such a hard time with the possibility of losing my mom.  We are so close and I am the only daughter with three brothers.  I have always clung to her and continue to stay by her as we only live five miles away.  I am trying to take care of our two little boys as well as spend as much time as possible with her.  I love her so much and feel so overwhelmed. 

Lately her belly has swelled to the point that she has to wear my maternity pants.  It feels like a pregnant belly.  She is going to the doctor today about it - it has been pretty bad for about a week.  Does anyone have any clue as to what this could be?  She has been doing quite well - even working some days.  She still cooks, cleans, etc.  just gets tired much quicker than she used to. 

Thank you all for reading.  I am so thankful to have found you!

Re: Hi everyone

Hopeandgrace,  I'm so sorry to hear about your Mom.  Well , I don't know what time your appointment was with your Mom's doctor?  You probally have been given an explanation of why.  So I just say for now that it is common to have large amounts of fluid retention due to the cancer.  It could also be inflamation of the visceral fatty tissue depending on the extent and how much the cancer has spread.  Well, welcome to the site and feel open to discuss or ask any questions about your Mom.  We are here to support you and your Mom regardless of what is going on. It sounds as though your Mom's cancer has been spreading to other areas for a while.  Wish you the best and don't feel alone . We are here to share what ever we know.
God Bless You Both,
Jeff G.

Take it to the Limit,One More Time! (Eagles)

Re: Hi everyone

hopeandgrace....I would live follow our Jeff by welcoming you to our site.   I would just like to add that you might want to read up on ascities (fluid retention) as Jeff had mentioned.  You will find many threads discussing this particular subject.  Simply, enter the word in to the search function.   In many instances it can be drained, and this is something you might want to discuss with the physician.
Hugs to you and your family,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Hi everyone

Hopeandgrace,
I am sorry you have had the need to come here, but welcome. It does sound like your mother has ascities. This can usually be drained to make her more comfortable.

We are a great little group and very supportive so if you have any other questions, just ask. There are no silly questions and you would not believe the knowledge contained by our members.

I wish your mom good response to treatments and am sending you the best thoughts

Kris

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

Re: Hi everyone

Thank you so much for such a warm welcome.  What a wonderful place to share. 

We didn't get a clear answer as to what is causing the swelling.  She had a CT scan this morning because they wanted to see what is going on.  They have talked to her about having it drained if it is indeed fluid.  What is interesting is she had a sonogram done about a week ago to determine the amount of fluid in there and the doctor was surprised that there really wasn't any?  We are confused as to what is causing her abdomen to be so hard and full though.  Any thoughts?

You all will be in my prayers.

Re: Hi everyone

Welcome Hope and Grace. I just wanted to say welcome to the best little club in the world that no one wishes to join. Wish I could give you an answer but we have only experienced radiation and cyber knife. Teddy's area of cancer got swollen and hard but it was not the whole stomach. You sound like a wonderful daughter and your mother is very lucky to have you by her side. Stay strong and please keep us posted.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Hi everyone

Hi Hope & Grace,

I don't have any answers for you either, but do want to welcome you to the site and wish you & your family all the best on this journey with CC that no one wants to take. I can tell you that you have come to the right place. The people here are all wonderful people & they all know what you are going through & are willing to help with information and support or just to listen when you need to vent. Take care and know that we are all here for you.

Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: Hi everyone

hopeandgrace.....As our Jeff had mentioned the tissue around the tumors can be inflamed thereby causing the swelling possibly, of the omentum and peritoneum.  It has been reported before although; I can't remember who the poster was.  Hoping for you to find the answer soon and for your Mom to otherwise be comfortable.
Sending tons of good wishes your way,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Hi everyone

Dear Hopeandgrace, God bless you and your family.  My daughter is just 30 and is pregnant with her first child.  She is having a hard time as you are.  My abdomen became huge and relatively fast.  I looked as pregnant as my daughter.  I believe it sounds like ascites (fluid retention).  Yesterday I had it drained for the first time.  They removed 3-1/2 liters of fluid, and they were going to send it to the lab to see if the fluid is malignant.  It doesn't hurt, hopeandgrace, and it relieved my discomfort immediately and helped my breathing.  Your mom doesn't need to suffer with that.  It took about 30 to 45 minutes.  I was able to go home and carry on as normally as I can.  I do know that it can come back, but everyone is different.  I also was told it could be removed quite a few times. 

My prayers are with you and all the best to your mom and your family,
Sophie

Re: Hi everyone

Sophie...so glad to hear that you are feeling much better following the draining of the fluid.  Wishing the best of best for you in the coming year.
Hugs
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Hi everyone

Thank you all again so much for your responses. 

Sophie, I am particularly touched by your message as I feel so much for you and your daughter.  I was 27 weeks pregnant with our second child when we found out about my mom and it was absolutely devastating.   There are so many things to be careful about already when you are pregnant - and then when something like this happens it seems to all be so overwhelming.  I was so concerned for my unborn son - would he be ok even though his mother spent hours crying and exhausted? There were days I could barely keep food down because the emotions were just washing over me all hours of the day.  We were so thankful that my mom was doing so well and was at the hospital when he was born.  The Lord has blessed us with so much time.  I am also so thankful that we have a healthy and very happy little boy despite the enormous anxiety and depression I dealt with while carrying him. 

That is wonderful that you are so much more comfortable now that the fluid has been drained.  It sounds so much like what my mom is going through.  She is such a skinny minnie but she has this big, pregnant looking belly right now.  Did the procedure hurt at all?  Are you having trouble with nausea? If she doesn't eat, she starts to get sick.  She had another CT scan today so we should know in a few days what's going on.   

Sophie, when is your daughter due? I will begin praying for her and your family.  I keep counting my blessings and reminding myself that things here aren't as they seem.  The Lord is in control and nothing can separate us from His love.  We're all essentially getting "better" by getting close to dying everyday.  I am thankful my mom wasn't taken from me when I was a child like so many others and I am thankful that I have all of this time to serve her and show her through this trial how much I love, respect and admire her. 

God bless you all and thank you again for the kind words and encouragement.

Re: Hi everyone

Thank you for your concern and kind words, Marion;

Dear Hopeandgrace.  What a touching, heart-rendering email.   It has me crying.  You have a wonderful outlook about the beauty of each day with your mother and how you are greatful you have had her as long as you have.   I copied your post and sent it to my daughter because I want her to see that all through your devastation and stress, your baby is fine.  She is due January 29th.  My granddaughter will be given the name Anna. 

My draining procedure was at the hospital, outpatient, and it did not hurt one bit.  In fact, I wasn't even sedated.  Lydocaine was used to numb the spot where the fluid would be drained.  An ultrasound was used to show the radiation doctor where to remove the fluid.  I went home, and I felt no nausea.  I was able to eat and drink a little.  The draining hole is only as big as a needle hole, and I was able to sleep last night without pain.  Your mom's doctor should be able to palpitate her stomach and be able to tell right away if it's fluid retention, especially since she is a small woman.  It will make her feel so much better.

Thank you, hopeandgrace for your kind words to me.  It gives me confort and eases my mental anxiety.

Prayers for you and your family,
Sophie

Re: Hi everyone

Hopeandgrace,

At 28 this must be a lot for you; it was for me and I was 38 when I was touched by cholangiocarcinoma (back in August).  My Mom was in Pittsburgh, in Montifore Hospital.  If there is anything I can do for you, any help or contacts that I can share, please do get in touch.  I will help in any way possible.

We are too young to be dealing with the enormity of these situations, but I am sure that everyone feels that way in the face of overwhelming life changes.  Be strong and care for yourself well.   

Sophie, please know that my Mom too when through this, and your relief from the drainage is right on target.  I am sorry your are dealing with that, and it reminds me of how much I hate this disease.  I wish you well in the face of adversity. 

-ljg

Re: Hi everyone

Sophie, I am so glad you were encouraged by what I said.  I have passed onto my mom what you said about the drainage and it too eased her fears.  We have yet to hear back from the doctor about the results of the CT scans. 

If your daughter ever wants to talk, please email me.  I know how impossible it seems when you are pregnant and dealing with something this heavy.  Please tell her that it gets better! There is so much less to worry about once the baby is born and others can help.

LJG, thank you for the message.   My mom is right now being treated at West Penn Hospital, but began at UPMC Liver Cancer Center.  Once the cancer spread, they thought it would be best to go back to the oncologist that she really liked at West Penn since they would be using the same drugs.  Was your mom from Pittsburgh or just being treated here?  The weather is awful but the hospitals are great! : )

Pray you all had a wonderful New Year.  Many blessings in every day!

15 (edited by ljg Mon, 09 Feb 2009 17:23:21)

Re: Hi everyone

Hi again-

My Mom was transferred after her cancer was found in a suburb of Pgh.  The family is pretty much from Pgh. and we have doctors in the family in that area too.  Ironically, my Mom was born at West Penn Hospital...

We have links and I hope that helps you feel that you are not alone. 
My very best to you, sweetie.  You hang in there with this process.  -ljg

Re: Hi everyone

hopeandgrace,
I just wanted to thank you for your posts. They have made my heart ache and lifted my spirits at the same time. My mom was diagnosed in Oct. 08, and I'm having a really hard time dealing with it. You put into words alot of my feelings. Your mom sounds like mine with her faith and optimism. I hope they both keep it. I'm supposed to be the one keeping my mom's spirits up, but she always lifts my spirits and gives me faith. You and your family are in my prayers.

Re: Hi everyone

Thank you, ljg.  What a coincidence that your mom was born at West Penn! I know that hospital all too well, now. 

Robyn, I am so sorry about your mom's diagnosis and that you too are dealing with this loathsome reality.  Although we have to believe that it is all for the good! You are just about my age - doesn't it seem like we are still babies ourselves?  There are days that I want to just drive to my parent's home and curl up in my bed in my old room and pretend like everything is OK again.   Then I wake up and realize that I too am a mother and have to keep it together.  I'm so glad that my words have helped you.   We aren't alone and one way or another, this nightmare will be over and we will someday never be separated and never have to endure these trials again.   The diagnosis is still so new for your family.   From what I've experienced, things do become more manageable once a plan is put into place and treatments begin.  Because my mom's diagnosis was such an unbelievable shock - she was in perfect health - I went through a period of severe panic.  It really tested and STRENGTHENED my faith for which I am so thankful.  I would sit and hug my boys so tight and cry and cry thinking I would be taken from them in an instant - nothing seemed secure to me, like I was walking through a minefield not knowing what would blow up next.  But then through prayer, and grace, I was calm.  There was no minefield.  We aren't abandoned here and nothing is random.  We know that God is compassionate and all knowing - our ever present help in trouble.  We will get through this, our mothers will get through this, and our Lord will never leave us.  No matter what happens, it will be good. 

Stay strong and you too will be in my prayers. 

An update on my mom - the swelling in her stomach is apparently not from any blockages from the cancer, but rather, from the chemo.  It is pooling in her stomach and making her pretty sick.  They put her on a diuretic and are going to try and drain it as soon as she is done with the script.  The cancer in her liver isn't moving, but they did see some activity on the spot on her rib.  She is also going back to UPMC Liver Cancer Center.  I think she is a little frightened as she is comfortable with her routine with West Penn, but they are looking to try something else with her at UPMC. 

You all are in my prayers and I am not just saying that.  I pray daily for you all.  God Bless!

Re: Hi everyone

Hopeand grace, parts of your story sound so familiar. I lost my precious mother 6 years ago to this dreaded disease. She was 66. I had two children under the age of 4. I am the only girl with 3 brothers. Unlike you I lived 2 1/2 hours away but was still very close to Mom. She was the epitomal Grandmother. Just be there for her. Cherish the time you have together and say the things you want to say. There will be things you will do for her that your brothers can't. Stay strong and hold onto your faith. Losing my Mom was the hardest thing I'd ever been through but you will survive. It hurts like hell.
The good thing about this disease is that it makes you get real with each other, no sugar coating things just raw honesty. I got to say things to my Mom I probably wouldn't have if not for being scared of losing her at any given moment. we had 6 precious months with her. I wish you alot longer with your Mom. Please know you are in my prayers. I know what you're going through. I pray for miracles for you, no matter how small. Stay strong but know it's ok to break down too-even in front of her. Love, Hugs and prayers, Carla