Topic: Riding the roller coaster

Hi everyone,
I'm so glad to have found this site and such a wonderful group of people! My husband was diagnosed with Stage IV colangiocarcinoma on Feb 1, 3 days before his 49th birthday. He had shoulder surgery back in May 2016 and had been in physical therapy, so it was difficult to tell exactly when his pain started to shift, but he started complaining more vigorously and pursuing other pain relief options around Thanksgiving.
Despite repeated trips to his primary care physician, no thorough testing was completed, until the jaundice set in at about mid-January 2017. Through the course of his hospital stay it was determined that he had 2 masses in the liver, one on the left lobe of about 7 cm and the other wrapped around the portal vein. At that point he was deemed inoperable and sent home to begin chemo.
We now know that the cancer has traveled to his spine, the lymph nodes regionally and in his clavicle, and we most recently found 2 small mets on the brain. He begins his third round of gem/cis on Monday.
We have 3 young children, and I have gone from a full-time job that involved over 50% travel to being home full time and barely able to keep up and get a small bit of work done. I'm very lucky that my boss and the organization I work for have been extremely supportive and are giving me extra time off.
I'm not sure how much of his prognosis my husband understands given all of the pain medication he's on. The kids are aware that he has cancer and is getting chemotherapy but we have not shared staging or the aggressive nature of this particular cancer with them.
Sorry for the long post...I look forward to hearing from others on how you have coped with the struggle. I'm trying to only think for each day as it comes, but find myself often thinking about a very scary future.
Best
Gail

Re: Riding the roller coaster

Dearest Gail, welcome to our wonderful family and the best place to be for CC support.
We know that when you start this journey you feel as though you have been hit in the stomach with a bat! You have more on your shoulders than one person should carry and I am wondering if you can reach out to relatives and friends and work up some kind of schedule for others to help.
I am also hoping that your husband is with an ONC and Hospital that has experience with CC.
Don’t be shy about getting 2, even 3 or 4 opinions. This is a very rare Cancer and no Doctor will mind you wanting more opinions. Keep a folder of all test and LAB results.
Here is a site you may find helpful: http://cholangiocarcinoma.org/newly-dx/
You are already doing the right thing by trying to take each day at a time. I know you are going to get some good responses here and please know that you are not alone as you have a whole new big family here to help.
It is cathartic to be able to write to us as pounding the keyboard can be very helpful!   Please keep us updated as we truly care!

THANK YOU FOR LOVING ME! 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: Riding the roller coaster

Hi Lainy and thanks for your reply,
We are now with a wonderful ONC at Penn after a terrible hospital experience where I was told it wasn't worth doing a PET and we would just do chemo until he couldn't take it any more. We are headed to a nutrionist today as his appetite is very poor and he has already lost quite a bit of weight.
I have a lot of support from both my work colleagues and parents from my children's school. It's hard to even know what help to ask for...I could probably do a bit more work but find it so difficult to focus as my mind keeps wandering. I have applied for a few therapy sessions through my benefits that they will do through the computer so I don't have to worry about leaving him home alone.
His next PET scan is on the 3rd and repeat brain MRI is on the 18th so we are hoping for something to move in a positive direction. So far every test result starts with "I am sorry, but" and we really need some glimmer of hope.
Best
Gail

Re: Riding the roller coaster

Dear Gail,

Welcome to the group.  I am so glad you found us but also sorry that you had a need to.   It sounds like you are doing all the right things for now.  Yes, just take deep breaths and take it one day at a time.   Some times you may have to go to one minute at a time.    Please update us on how things are going as you can.  Know that we are all here to help and support you in any way that we can.

Hugs,
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: Riding the roller coaster

Gail, just some suggestions on what to ask help for:  Grocery Shopping, Laundry, Car Pooling for the kids. I know people who have taken offers for meals especially dinners and kept a calendar of who is doing what. Grass cutting?
Therapy is a great idea and you might want to ask your GP for something very light to help with the stress. I am a terrible pill taker but went on the lightest dose of Lexapro and it really helped. Also sometimes clergy can help.
I am so glad you found a great ONC!!!
You WILL get to where you need to be take be kind to  yourself!

THANK YOU FOR LOVING ME! 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: Riding the roller coaster

Dear Gail,

Welcome to our group.  With 3 children and a job with 50% travel, you must already have a knack for juggling a busy life.  However, I agree with Lainy that you should ask for help and it seems like you are already on a good path of taking care of yourself as well.  In addition to the husband and kids (or maybe cause of) you need to keep yourself as well (emotionally and physically). 

Although not enough hope, there are some good new stories here.  Have they done genetic testing on the tumors?  And, it may be worth asking your doctor is there are pain meds which do not affect is lucidity as much.  When I was researching for my parents, I found that in some cases fentanyl  patches can be given instead of morphine with less cognitive impact to the patient. 

My thoughts are with you and your family.

catherine

Not a medical Professional-  just someone who got caught up in this lousy disease.

Re: Riding the roller coaster

Thanks everyone for welcoming me into the fold.
So far, I have had help from local friends so that I can take the kids to their swimming lessons, and I've been able to get out of the house for a little while at a time to do things like grocery shopping, which seems to be a bit cathartic as strange as that sounds. I've got a cleaning service coming every few weeks to help keep the chaos under control.
I do think that as I start doing more work during the day, that meal help would make a lot of sense. It's just so hard to fathom doing this all on my own...I had respect for single parents before but even more so now.
We did get the results of the FoundationOne testing last week, so I am hoping the doctor will discuss them with us tomorrow so we can get an understanding of other treatment options. I just hate hearing that he is "not curable"...I still want to believe recovery is possible.
Gail

Re: Riding the roller coaster

Gail...we love to keep our independence, but also must realize that there are situations where others would like to be of help AND we must allow for the opportunity for this to happen. 

You may want to make note of what is needed most:

Meal Services - one person can organize a list.  Those that want to contribute may fill in their names and the day of delivery.

When my friend had breast cancer her family never lacked a meal.  In fact, it became fun for those of us providing it.    We tried to outdo each other and the most incredible, wonderful dinners were prepared.   Everyone was happy.

Already you covered the house work.

Gardening and lawn:  that too worked well for my friend.  Amazing how many men and various teenagers pitched in.  Again, everyone was happy.

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: Riding the roller coaster

Thanks Marion, you make excellent points. I did set up a website that helps with organizing both meals and visits...that's come in very helpful when chemo prevents us from doing pick ups and drop offs at school. But it's true that I'm probably not putting in for meal assistance as much as I should.
Since my husband had shoulder surgery last year, we have a yard service, and I'm using gift cards from our long distance friends to cover some of the extra expenses.
We start round 3 tomorrow -- hopefully he'll handle it as well as the others so far.
Gail

Re: Riding the roller coaster

Gail,  I have so much respect for you knowing what you are dealing with and how you are handling things.  I know what I all went through with my husband.   When I think back I wonder how I managed to do it all and  I didn't have  3 young children to deal with at the same time.   Take all the help that is offered and don't be afraid to ask for more when needed.  Take care of yourself too.  Sometimes we forget to do that in the midst of all the chaos.  Wishing you well and hoping that you will get some positive info from the doctor tomorrow.  I will be thinking of you.

Hugs,
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: Riding the roller coaster

Gail,

We were told Mom had 12 months in Oct 2013.  She still she is not considered cured, but in remission (they also told us this was not possible to hope for).  Although not enough, we are seeing more examples of patients living with the disease.

Will be thinking of you tomorrow-

Catherine

Not a medical Professional-  just someone who got caught up in this lousy disease.

Re: Riding the roller coaster

Thanks everyone,
We agreed with the doctor today to lower the morphine dosage to 15mg rather than 30mg. This is a significant change since as of a few weeks ago he was taking 60mg's. We are hopeful that this means the cancer is being reduced by the gen/CIA but won't have the next PET for a few weeks.
He is down another 5 pounds over the last two weeks but this is the smallest weight loss yet and we are hoping it will slow down now that webbave added EnsurePlus with whey protein mixed in twice a day.
Unfortunately the doctor has not yet reviewed the FoundationOne report but will hopefully talk it through during next week's appointment.
All in all, not a bad start to round 3!
Gail

Re: Riding the roller coaster

Gail, all sounds good and know that you are doing all the right things. We love to hear that pain is going down. Ensure is good too. My Teddy liked the Carnation Vanilla Instant Breakfast  and I would blend in a banana. You can drink it in place of a meal or with a meal.  Keep that gret news coming. Slow but sure!!!!!

THANK YOU FOR LOVING ME! 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: Riding the roller coaster

After having a pretty spectacular week in terms of his energy and pain following this week's chemo, we are now in the ER getting checked for a potential bowel obstruction. He's had other unrelated digestive issues from time to time...just praying this doesn't turn into something serious!

Re: Riding the roller coaster

momo....these type of obstructions are not uncommon with our disease.  Perhaps  things aren't moving along the way they should.

Crossing fingers for a good outcome.

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: Riding the roller coaster

Thanks Marion,  luckily it was nothing more than too much constipation. They kept him overnight in the hospital and we got to meet with his GI doctor today...good news is that the plastic stent is still working but it will likely need replacement with a metal one in the next few months. Has anyone been through this recently or have any advice? He's pretty nervous about the prospect.
Thanks
Gail

Re: Riding the roller coaster

mom.....that's what I meant by " things not moving along". Good news.

There are advantages to the metal vs. plastic stent.  For one, it's expandable, hence it lasts significantly longer thereby eliminating the constant stent changes. It should last at least 9 months or more.  Secondly, should it clog  it can be cleaned out and/or a plastic stent can be placed into the metal. 

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: Riding the roller coaster

Hello,

Re: Riding the roller coaster

Hello,
My mom has her second set of plastic stents and it's always nerve wrecking to wait for the conclusion of the ERCP.  Metal stents are permanent and can also migrate, and may be difficult or even possible to take out.  Another issue is if the tumor grows stent placement could be impossible and it may only be able to be taken out.  I dislike the fact that plastic stents must be replaced every 3 months to prevent infection, but hope to extend the time by about another month.  I will check more into metal stents in future visits.  Keep us informed.  Thank you.