• From: Huber Heights, Ohio United Sta
  • Registered: Tue, 08 May 2012
  • Posts: 18

Topic: Confused....

So my mom was diagnosed with Stage IV inoperable Cholangiocarcinoma in April this yearand given 4-6months to live with treatment...she started Gemzar and did 3 rounds of treament and her tumor marker went from 91 to 26 and then 10 at her last check.  Her doctor decided to keep her off Gemzar for 6 weeks and repeat the tumor marker and CT scan.  She had her follow up appointment last wednesday and found that her tumor marker went up to 30 and no change in the CT scan.  So she's gonna keep her off Chemo for another 6 weeks to give her body a rest because shes not tolerating the chemo to well she is realy short of breath and her hemoglobin drops while in treatment...at that same appointment the dr had also told my sister that death usually comes within a year of diagnosis.  Which really confused us because at an earlier appointment the dr was really impressed by the way the cancer was responding to the chemo, and told us that typically only 30% of pts respond to chemo and usually not as much as my mom did and that just increased her prognosis.  Can anyone give us some hope here, we were so hopefull earlier in the year, but was let back down last week....any advice or experiences would be appreciated

Thanks,
Jennifer

<3 Hoping and praying for a miracle for my mom <3
  • Registered: Fri, 12 May 2006
  • Posts: 8,165

Re: Confused....

Jennifer….first and foremost – I read plenty of good news in your posting.  It is my personal opinion that when dealing with a difficult cancer, we cherish all positive developments.  Then how do we deal with a prognosis?  I believe it to be a very personal decision.  Regardless of how a person prefers to work through the issue of prognosis the members on this board have shown to be very supportive and understanding.  That, I believe, is the core of this discussion site – a free and uncensored place for all.  The knowledge you obtain from this site or from other sources have to be discussed with the treating physician for further clarification.   
Jennifer:  you might want to take a look at the following link provided by the National Cancer Institute:
http://www.cancer.gov/cancertopics/fact … osis-stats

I hope that your posting brings together all the great minds of our members  and generates a slew of ongoing discussions.

Hugs to you,
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
  • From: Phoenix AZ
  • Registered: Fri, 13 Jan 2006
  • Posts: 8,209

Re: Confused....

Jennifer, we never listen to time limits as everyone is different and we try to stay realistically optimistic. We like to say that we were not born with expiration dates stamped on our feet. There are just not enough numbers to know what to really expect or when or why. The best advise I can give you is to take each day at a time and to be very strong. The great part is that we do have miracles occurring on this Board and we love those the best. You never know how strong you are until "strong" is the only choice you have! If you are ever in doubt you can always get a 2nd opinion and sometimes that is a good thing to do even if it is to put one's mind to rest.

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.
  • From: Hilton, New York
  • Registered: Fri, 15 Jan 2010
  • Posts: 678

Re: Confused....

Hi Jennifer,

When I was first diagnosed of course I went to the internet to see what my prognosis was and what I found was extremely grim.  Then I realized (after much freaking out) that I am not like anyone else (which is a constant theme on this site), that no statistics can define me (not even my age!), and that I needed to focus on how I was feeling and how my life was going in the moment.

I can' say that I don't cling to every morsel of positive information I get form my doctors but I try to not let my mood and my attitude be determined by what I read somewhere.  I can't say that it's always easy, but my husband always tells me that every minute I spend worrying about something that may or may not happen is taking a minute away from enjoying where I am for that moment

I agree with Lainy about second opinions. I went 3 places at different points after my diagnosis and treatment  to get a sanity check with doctors outside of my area.  They were all very positive experiences for me and most just confirmed that what I was doing was what I should be.

Take care,
-Randi-

Survivor of breast cancer (1994), thyroid cancer (1999), cholangiocarcinoma (2009).

My comments, suggestions, and opinions are based only on my personal experience as a cancer survivor. Please consult a physician for professional guidance.
  • From: Huber Heights, Ohio United Sta
  • Registered: Tue, 08 May 2012
  • Posts: 18

Re: Confused....

Thanks everyone!!

Marion, I am not seeking medical advice, just some hope for my mom.  I was hoping that someone had a similar experience as my mom is...I will definately check out the website that you mentioned thanks again so much!!!

Lainy, We are trying to stay positive for our mom, we do not let her see us cry or worry at all!  It is so hard to not listen to the life expectancy that they are giving her, we try not to, especially since she has passed the first one that they give her, that alone does give us hope!!  It's hard not knowing much about this cancer, and what we do know is not good!  As far as second opinions she has had 2 other opininons, both with the same prognosis.

Randi, your husband is right about not worrying, but it is so hard and always in the back of our minds what the dr's say, even though she has proven to not be the typical patient.  She has already lived passed what they have told her she would, they gave her 4-6 months with treatmnet all 3 drs that she went to, and she is now going into her 6 months since diagnosis.  To her, we only talk about it when she brings it up we dont want to dwell on it, we never let her see us cry or worry about...we ALWAYS are positive around her, and I do believe it does bring her spirts up!

Thankyou all for commenting on my post, it does me alot to me and I will let everyone know what happens when she goes back in 5 weeks for a follow up!! Wish her luck!!

xoxo
Jennifer

<3 Hoping and praying for a miracle for my mom <3
  • From: Hilton, New York
  • Registered: Fri, 15 Jan 2010
  • Posts: 678

Re: Confused....

One other small piece of advice to take or not.  Try and allow your mother to be sad or not optimistic all the time because she will need to express these feelings as well.  It can be very isolating to have to always be up and happy and optimistic (you probably already know this).  I saw a counselor so that I could have a place to be angry and sad and not worry about bringing down my family members.

Hugs
-Randi-

Survivor of breast cancer (1994), thyroid cancer (1999), cholangiocarcinoma (2009).

My comments, suggestions, and opinions are based only on my personal experience as a cancer survivor. Please consult a physician for professional guidance.
  • From: Huber Heights, Ohio United Sta
  • Registered: Tue, 08 May 2012
  • Posts: 18

Re: Confused....

Randi,
Thanks for the advise, and she does have her moments and when she does we cry with her...good idea on seeing a councler!!

Thanks so much

xoxox
Jennifer

<3 Hoping and praying for a miracle for my mom <3