Topic: New to Site - Friend has cc

I have been reading this site for a while now and feel as if I know some of you already but this is my first post.  I have a dear friend, Sarah, who went to the Doctor August 19th with stomach pains and just generally not feeling very well.  She was jaundice and sent directly to the ER and her roller coaster ride began.  She was diagnosed with intrahepatic bile duct carcinoma stage IVB.  She was in the hospital about 5 days, released, got a port and started chemo right away.  She was doing Gemzar/oxaliplatin, the regular cycle of one week gemzar, one week both and then a week off.  She was being treated at Virginia Hospital Center by Dr. Feigert.  We went to Georgetown Hospital for a second opinion with Dr. Pishvaian and also Sibley hospital (part of John Hopkins) and met with Dr. Azad.  At the time, the current treatment was working, her CA 19-9 numbers were decreasing and her tumors showed some shrinkage.  I know she should be with someone who deals a lot with cc but she really felt comfortable with her Dr and at the time, things were moving in the right direction.  I think he has dealt with it before but obviously not like others (I would like to see her at MD Andersen).

Around November, she started having issues with her gall bladder which caused acute pain.  The doctor said it was “sludge” and gave her some medication and told her to watch her fat intake.  Oh, I forgot some vital statistics.  Sarah is 52 years old and the picture of health before this (I know that is the case for others)  She was always watching her weight, was a vegetarian and exercised regularly.  She never had fried or fatty  foods so is now basically not eating any fat.  We worry that she isn’t eating enough but understandably she wants to avoid any gall bladder issues.

The roller coaster continued and during a January hospital visit, a CT scan on the 20th showed some growth.  According to the report, there is a large central hilar hypodense mass which extends into the hepatic parenchyma  which measures  5.7 x 8.8 cm, which grew slightly from 5.8 x 7.7 cm.  There are several small metastases scattered diffusely throughout the left lobe of the liver as well as a few scattered lesions within the right lobe of the liver.  The largest lesion at the lower aspect of the right lobe actually decreased from 5.6 x 3.2 to 4.3 x 2.6 cm.  The second largest in the right lobe also decreased from 3 x 2.3 cm to 2.6 x 1.9 cm.  Her CA 19-9 started out at over 5,000 in August,  got as low as 2,400 and the last reading at the end of January increased to 3,800.  She took the growth in the large tumor very hard.  After this they actually stopped chemo to explore other options (not sure if I agree that they should have just stopped?).  We went back to Dr. Azad and she had a potential clinical trial but when she went for a visit, she had started accumulating fluid and ended up back at the hospital (apparently, the accumulation of fluid precluded her from taking part in the trial).  She was released from the hospital and was feeling somewhat better, getting out some and her 30 year old son came home from Alabama and that was very helpful.

She went back to Georgetown and has been accepted to a different clinical trial – I3O-MC-JSBA:  A clinical phase one trial of LY2801653.  I believe Kris is doing the same trial!  She will be in Part D where she will also be given Cisplatin.  She starts the chemo on March 10th (her birthday) – goes in tomorrow for CT Scan and consult and Friday is biopsy.   I am so glad she is doing something since her last chemo was January 8th and with this nasty cancer, if she doesn’t do something, I worry that the cancer will continue to grow.  Her biggest problem of late is fluid retention.  She goes and gets it drained – last week she went Tuesday and Friday!

Sorry for the long post but I wanted to give as much information as I knew.  Not being family or able to be at every appointment, I don’t always have the details.  At times it is obviously overwhelming for Sarah and I also don’t want to ask a question to the doctor that may upset her.  She isn’t married at the time, her son is 30 and lives in Alabama and comes up when needed.  Her mother has been staying with her but bless her heart, she is 87 years old and although sharp as a whip, this is surely taking a toll on her.  I thought it would help for Sarah to possible meet or talk to someone who has cc.  We are in Alexandria, VA and I know I have seen many posts from Holly22A (Diana) who lives in DC or there may be others locally.  Maybe I could get her to talk to someone who is dealing with the same thing she is.

Any thoughts, advise, suggestions are welcome as we all continue this ride!  I am extremely impressed at how informed you all are.  I don’t believe Sarah has been on the site – I’ve told her how wonderful it is but I think she gets scared to see some of the less positive info.  I tell her of the many people who have battled this for years to try and encourage her.  Let’s hope those stories continue.
Thank you all and for those on the east coast – hope you are having better weather than here in Virginia.  It is snowing and we must have 6 inches on the ground.  I am ready for Spring!

Re: New to Site - Friend has cc

Hi Valerie -
Never apologize for a long post....we have all done them at one time or another. And welcome to the best little family. Sarah is very lucky to have a friend as good as you.....everyone should have someone like you.

My husband is 50 years old and was diagnosed in May of 2013. I would love to say he was the picture of health but that's not so. He had Hodgkin's lymphoma as a teenage which left him with some health issues and like me he likes to eat too much. This disease loves to pick on all walks of life.

As for help, is Sarah disabled at this point? If not I would say start working on that if she is not working. I would suggest looking at your local Area Agency on Aging and although it says for aging, it may be able to provide some case management to find help. Also if she has her own private insurance, look very closely at what it will pay for....some plans, a very few will pay for some private pay care such as custodial care...housekeeping, bathing, dressing, etc. The other thing you might look at regardless of her insurance....private or Medicare is if Home Health would be of assistance. They could provide a nurse to assist with disease management (pain, nausea, weight loss, etc), a bath aide to assist with bathing and things such as physical therapy.

Also if they are draining the fluid out of her as often as twice a week you may want to talk to her and maybe she can talk to her doc about putting a more permanent drain in place then she can have nurses come to the house and drain it as needed or even teach her how to do it. It would make life easier.

Hope this helps some and feel free to keep asking questions.

KrisV

Any advice given is based on my experiences and should not be substituted for any medical recommendations. Please speak with your provider before making any changes.

Re: New to Site - Friend has cc

Valerie...welcome to officially joining our discussion board.  I don't have much to add to what Kris already has mentioned other than that your friend may very well see a reduction of her fluid while in the "interventional" arm of the clinical trial.
http://clinicaltrials.gov/show/NCT01285037.
Kris is in enrolled in the primary "arm" of this clinical research study. 

You are a wonderful friend; Sara must be so happy  knowing that you are in her corner.   
I have tried to reach out to Holly22A (Diana) some time ago however; have not received a response as of yet.  Hopefully she reads your posting and comments on your request of contacting Sara.  You may also find her e-mail address by clicking on her name in the signature box which will then lead you to her personal e-mail address.  Now that you are a member, you are able to do so. 
Please stay in touch.  We are in this together and we care for each and everyone on this site and beyond.
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: New to Site - Friend has cc

Hi Valerie,

Welcome to the site. Sorry that you had to join us all and I'm sorry to hear about your friend as well, but I'm glad that you have joined and have posted as well now as I know that you will get loads of help and be able to help your friend even better also. And what a great friend you are too in seeking help and answers here. Please know as well that you will get a ton of support too from everyone here.

No apologies are needed for the length of any posts so please, you go ahead and post as much and as long as you like! I'm sure that Kris will be along soon to share her experiences of the trial that she is on and I think also that would be good if Sarah could speak with some of the members here on the site. I know what you mean about how things can be overwhelming at times for Sarah with some of the details and info about everything so perhaps she should come here only if she feels up to it? I know that everyone here helped me so much when my dad was going through all of this but I am one of these types of people who wants to know as much as possible about everything. I guess that everyone is different to that though.

If we can help we will so please ask and we'll do our best. I look forward to hearing from you more and I hope that you will keep coming back here. We are here for you.

My best wishes to you and Sarah,

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.

Re: New to Site - Friend has cc

Valerie,

Welcome to the family.   No post is ever too long.  You are a good and supportive friend to Sarah and I'm sure she appreciates all you are doing.
Keep us up to date on how she is doing.  My best to both of 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: New to Site - Friend has cc

Thank you all for your help!  Sarah is getting ready to start the trial on March 10th.  This week she gets a CT scan and Friday is a biopsy.  I assume they want to know where she is at the start to see how the drugs work.  In answer to your question Kris, she isn't disabled and I know she had done some research on home care.  Her insurance is good, Blue cross and also has long term health care (we work for the Federal Govt)  I will follow up and see what she has found out.

She gets very anxious before every drs visit, no matter what the visit is for.  Hopefully, she will get some positive news with this trail.  And hope you are right that the fluid build up will lessen.  I'll mention the permanent drain, although some have issues with that as well?  Thanks again!

Re: New to Site - Friend has cc

Valerie -
If she has long term care insurance than you may want to look into that. Quite often it will pay for in-home custodial care (bathing, dressing, light housekeeping, etc) and it will pay better than for actual placement in a facility. There are often deductibles with this and sometimes it is good to get it out of the way when the need is not heavy.
The bile drains can be problematic at times (stents and drains alike) but I have found the drains for the fluid build up are less problematic but if they get her liver working better then the fluid will go away or at least lessen, my husband went from 6-7 months pregnant (thats what he looked like) to normal in a few weeks after surgery.

I wish her good luck with the trial.

KrisV

Any advice given is based on my experiences and should not be substituted for any medical recommendations. Please speak with your provider before making any changes.