Topic: Newly diagnosed

My mother was recently diagnosed with CC.  SHe is 79 years young, takes no meds and looks like she is 60.  This diagnosis has completely turned our worlds upside down.  In May, she went to dinner with her friends and woke up in the middle of the night vomiting.  SHe thought it was a virus.  It happened two more times over the next three weeks.  Her doctor ordered a blood test to reveal that her liver enzymes were elevated.  She had an MRI which revealed a 2.5x2 cm mass partially blocking her bile duct.  The GP said it was probably cancer and that she had maybe a year to live.  My Mom lives in Florida alone (my Dad died 5 years ago from lung cancer) so I had her fly up to me in Philadelphia because I felt that she would have better treatment here.  We went to Jefferson Hospital where we had more CTs, blood tests.  The GI told her chemotherapy would only extend her life 2 months and that she should have photodynamic therapy to alleviate her symptoms.  He also wanted to do an ERCP and put in a stent.  After much research, I got her appointments at Hopkins and MSKCC (of course they were on the same day as they only see patients on Tuesdays).  We decided on MSKCC probably because I grew up in NY and it was familiar and we have friends in NYC.  We saw Dr. Jarnagin who told my mom that her tumor was nonresectable at this time because it was encased around the portal vein and hepatic artery.  He wanted to try chemo to try to shrink back the tumor and perhaps operate.  SHe had a liver biopsy on Monday to identify the tumor and she sees an oncologist (Dr. Lowery) next week.

Jarnagin sees no reason to put in a stent because she is not jaundiced.  Mom as lost weight (13 lbs) over the last 2+ months and she is very limited in the foods her stomach can tolerate.  She belches frequently.  She recently told me she sometimes gets dizzy when standing or walking up stairs.

It's so hard to see such a transformation in mother physically and mentally.  SHe went from an extremely active person to someone who is often tired.  It's also really hard as I am an only child and my mom's life is in Florida where she has tons of friends.  Here in Philly she knows no one except my friends and my kids.  She feels like a burden in our house and she has taken over one of my kids rooms.  She and I both know that the care is here and that she will need my help once chemo starts.

I pray that the chemo works and she can have surgery and resume her life.  I am not very hopeful that will ever happen.  I am glad that I found this site and I feel for all of you that have to endure this terrible illness.  My dad died three months after diagnosis.  The only good part is that he did not suffer. He was in tremendous pain as it had spread to his bones.  I am so afraid of losing my mom.  We are incredibly close and I can't imagine my life without her.   

Thanks for letting me ramble.

2 (edited by PCL1029 Sat, 28 Jul 2012 10:22:16)

Re: Newly diagnosed

Hi,
You are doing the right things to go to Memorial SKCC to have their expertise for this type of cancer as  compare to the local ones.
Just follow their treatment advise and check the results 3 months later by Cat scan to see how good the chemotherapy works.
Come here often for support, Our Lainy and others are really good at comforting and provide emotional support to the care givers as compare to me in that department.
By the way I am a patient here for more than 3 years and I hope the same can apply to your mom too.
God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: Newly diagnosed

Hi Laurkcp,

My mother just passed Thursday from this cancer.  She sounds a lot like your mom.  She too was 79 years young.  She was my best friend.  In a few weeks, I would love to talk to you about our experience.  My email address is rjbyrnes@rgv.rr.com.  Please feel free to contact me.  You will find this site to be a blessing.  My prayers and thoughts are with you and your family.  God Bless.  Mona

Re: Newly diagnosed

Hi There,

Welcome to the site. Sorry that you had to find us all and I am sorry also to hear about your mum. But I am glad that you have joined us all here as you have come to the best place for support and help, and you will get a ton of both from everyone here. And please, you never ever have to apologise for rambling! You want to ramble then you go right ahead and do so! And if you want to shout, vent or let of some steam then you go right ahead and do that as well! We know what you are going through right now and we care.

I too was my dad carer when he went through his fight with CC and like you I am the only child. I am also my mums carer and have been so for years and she has copd. It is tough being the carer is it not, and from what you have said it sounds like to me that you have done everything for your mum. Your mum is in good hands medically at MSKCC and I hope that she will get some good news next week when she meets with the onc.

My dads CC was also deemed inoperable from diagnosis for the same reason that your mums was, too close to the portal vein and he did have the PDT as his treatment along with the metal stent for his jaundice.

I know what you are feeling right now and going through and it is tough to deal with. And please know that we are here for you. As I said, I hope that your mu gets some good news next week and please keep coming back here and let us know how things go for your mum. We are here for you.

My best wishes to you and your mum,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

5 (edited by marions Sun, 29 Jul 2012 18:11:56)

Re: Newly diagnosed

Laurkp....welcome to our site; the one no one wants to belong to, but it is happy to have found.
You and so many others on this site realize the shock experienced when presented with a disease such as this.
But you are not alone because; collectively we have gained much experience and gladly will share thoughts, lend support, and help you navigate the medical system.  We are in this together.   Please remember:  non one has an expiration date stamped on their foot.  Yes, the fear of the unknown is difficult, but is really helps to stay positive mixed with a dose of realism.  Know that you will do anything in your power to help your Mom and realize that this is your control over the situation. 

I also wanted to mention something we see occasionally only, a gastric bypass for those patients hindered by blockage of the intestine.  It is not without complication therefore, it is the call of the physician.  It does not cure the patient however, it allows for comfort.  In the meantime you would want to make sure that your Mom consumes meals high in protein, small portions, spread throughout the day.  Moving around aids in the digestion in fact, small walks are very beneficial. 

I am glad that you have found us and please, keep us posted.

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: Newly diagnosed

Thank you all for your support. It's very comforting knowing I am not alone in this battle. Mona, I am sorry for your loss.  I will contact you soon. 

I'm sure I'll have more to report after her appointment with the oncologist on wednesday. 

Lauren

Re: Newly diagnosed

Hi there! Sorry you had to find us, but with your mother having cc, I'm glad you did. This is the right place to be, everyone is so helpful.
First off, let me say, we are seeing that ages don't have much to do with someone getting cc. I'm only 30, and we have had a few people younger than me with it.
I know it must be hard to be away from your mom during this time. But for her to have the best outcome, she needs to get to a major cancer center. I believe this I'd very important, as most doctors don't know how to treat us. I go from Alabama to Texas to see my doctor every 3 months. I'm able to get chemo here at home though.
Please keep us updated, and feel free to ask questions. Hang in there, it's a crazy ride.
Blessing,
Tiffany

~Tiffany~ 31 years young wink Fighting CC since 10-27-2011
Wife to Brian; Mommy to Carter (8) and Madison (4)
http://tiffanyschwantes.wordpress.com/
Liver transplant 7-9-2013