Topic: New Member, caring for my Mom

Hello!
I am so glad to have found a place to talk with others who understand this disease.

My mom who is 68, was diagnosed in June of this year with advanced, stage 4 cholangiocarcinoma. She has tumors in her liver, the pole of her right kidney, the head of her pancreas and scattered through out the biliary tract.

We began chemo in the hospital in  July after she had stents placed in her liver, pancreas and one other near her gall bladder.

Chemo has been carbo/gemzar week 1 along with seeing the doctor,  gemzar on week 2 and off on week 3. Other than a terrible reaction to the neulasta which she no longer gets, side effects have been minimal. She has been suffering with digestive/bowel issues which we are not sure are related to the treatment, the cancer or both.

Her 3 month scans showed REMARKABLE shrinkage in all of the tumors with the exception of the one on the kidney pole. That did shrink but not as drastically as the rest.

We saw the doctor recently and he told us that he would re-scan in December and would most likely discontinue chemo at that point. I am not sure how I feel about that. Not sure if that is normal procedure or not.

This Friday we will be seeing the surgeon who wants to remove the stents. Again not too sure how I feel about any of this, either.

We will be seeing a urologist November 5 to get a second opinion on the kidney issue. She has inflammation in the left kidney as well as the tumor on the right one.

I hope I have not rambled too much here!

I am an only child and Mom's only caregiver so finding this board has been such a blessing to me!

Thank you all

Christine.

Caring for my Mom and helping her win this battle.

Re: New Member, caring for my Mom

Dear Christine, welcome to our extraordinary family but sorry you had to find us. So glad to hear the word shrinkage, one of our favorite words. There are Meds the ONC can give her for bowel issues. We are big believers in 2nd and 3rd opinions especially when you are questioning "things" and the other opinions can help put our minds to rest as well. I imagine that being an only child and the only Caregiver it is twice as hard on you but you are a blessing to your Mom. Us Caretakers need to be very strong and show a good attitude which is sometimes not so easy. I used to think I deserved and academy award! Where is Mom being treated? Don't be afraid to ask question of the ONC. If it bothers you to think about stopping chemo in December ask him why he would do that. Not that they don't but you have a right to have all doubts and questions answered. We are all here for you and you have come to the right place. Oh, and no apologies need on this Board for anything!

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: New Member, caring for my Mom

Thank you SO much!!

We are in Berkshire County, Massachusetts. We go to Berkshire Hematology Oncology in Pittsfield.  I LOVE our doctors and I trust them completely. Just so unsure of the protocol for this disease. Dr told us that he only wants to do 3 months of the chemo because of the cumulative effects and he does not want Mom to have it turn into a toxic situation which makes sense. I am just terrified it will allow the cancer to grow again.

My background is that of lung cancer patient advocate. I have lost so many amazing people to LC that I devoted my life to doing what I can for the LC world to make a difference. Then, WHAM we got this diagnosis and life just went upside down!

Mom has meds for the bowel issues, they help but nothing completely clears it up.  I should probably add that Mom is a very, very stubborn lady and gives us all a run for our money when it comes to taking ANY medication. She does not fuss about the chemo but flat out refuses the neulasta shots which were completely debilitating to her. She will take the immodium for her diarrhea but only on her terms and when she sees fit. VERY stubborn I tell you!

I have a list of things to discuss with the surgeon on Friday. I am curious if anyone else has had stents put in then removed?

Again, my heartfelt THANKS for being here !!

Warm Hugs
Christine smile

Caring for my Mom and helping her win this battle.

Re: New Member, caring for my Mom

Christine...I have answered your post in another section, but wanted to welcome you here also.  Christine, how are you involved in advocacy?  Are you a research advocate; NCI Patient Advocate, or other?

This disease has brought together some of the most amazing people; I am happy to welcome you also.  We are in this together.
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 Member, caring for my Mom

Thank you Marion

I am a lung cancer patient advocate, with my own web site and Facebook group called Make Some Noise for Lung Cancer Awareness. I help people research and find information on treatment plans, facilities etc.  My main focus is to provide a positive and non judgmental place for people to find help. The stigma associated with lung cancer is the most important thing I want to see abolished.

I am hosting my second annual Illuminate the Falls for Lung Cancer Awareness at Niagara Falls on November 16. It is the only event I will be doing this year as Mom needs me.  Normally I host AHL hockey games and minor league baseball games to help raise awareness for lung cancer. This year however, I have been focused on Mom as well as my son who is serving in Afghanistan. Did I mention I like to stay busy?? lol


I am so happy to have found this forum! NOBODY gets it like fellow travelers! Not many of my friends can comprehend what this is like, that not knowing and the constant worry of what if's. I began blogging to just have a place to vent but that is not the same!

SO thankful for you all!!

Hugs
Christine x

Caring for my Mom and helping her win this battle.

Re: New Member, caring for my Mom

Christine.....I like what you do and congratulate you on the commitment of making a difference in the life of others.  Your Mom is fortunate to have you by her side.  Good luck with the upcoming event.  May it be everything you wish for. And, may your son be coming home soon. 
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 Member, caring for my Mom

Christine, you sound like the most lovely, caring lady and you step up to the plate! We are so happy to have you here. And by the way a HUGE thank you to your son!!!! I am hoping for your big event to be a big success!

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: New Member, caring for my Mom

Christine,

My mother (79) was also diagnosed with CC in June.  Her tumor is wrapped around major vessels so surgery is ruled out.  I am also an only child and I lost my father to lung cancer 5 years ago.  I know how hard it is.  Mom is on oxiliplatin/F5U every 2 weeks for the last 5 rounds, but she is very fatigued and also has bowel issues.  I too wonder if it is chemo or cancer related.

The docs cant keep them on certain chemo drugs long term due to their toxicity, but I was told of maintenance type chemos that they can stay on.

Our lives have become all about what ifs.  I try not to think too far in advance.  It's too stressful.

Best,
Lauren

Re: New Member, caring for my Mom

Thank you all so much!

Lauren I feel as if I read my own story when I read your post. Uncanny how much we have in common!

Warm hugs to all

Christine

Caring for my Mom and helping her win this battle.