middlesister1

Tilly,

I knew the medical jargon came much too freely for you to be new to it. You have already contributed to the knowledge base and I have a feeling you will do so even more in the future ( I’ll thank you now for it in case I forget later).

If we had only looked at the stats and prognosis docs gave us, Mom might not have bothered trying the chemo, and then we wouldn’t have been able to go on to other treatments. My Mom is not the norm, but she is not the only one who is doing much better then the ONCs said at diagnosis.

In May 2014, extended family all met in FL for a last hurrah for Mom- they said she had a year. Today we spent the afternoon shopping and went to lunch. It’s hard, but try to find the balance between reading the journals/stats, but then assume that many more are now surviving towards the upper end – or even longer- than the studies report. I’m pretty sure my mother’s survival through Y90 hasn’t been captured in the stats.

Take care,
Catherine

Dear Tilly,

Sorry you were detoured here, but we’re very happy to have you join us. And, you are so correct with the details helping. I have seen questions on how long recovery takes from a Whipple. and your post gives valuable information to others. It also gives a waning about the risks of over medicating with the opiods- we went through this with my father and it took several days to get out of his system.

Just curious; are you in the medical profession?

We look forward to the updates and wish you r husband great success.

Best wishes,
Catherine

Gail,

The picture came though and I’m happy to hear you had a well-deserved day. However, if you want to be with your husband at night, that is where you should be. If his family can’t help you achieve this, it could also strain your relationship in the future.

My heart is with you and you family today and in the future. I am so sorry.

Catherine

Dear Gail,

We lost Dad in Feb and we were fortunate that he went down hill very quickly at the end. Mom had hoped to keep him at home, but at the last week she realized she was not physically capable. Our home hospice nurse warned us he would be failing soon, but it happened so quickly that it was difficult to get round the clock help in place. We had a few days with someone coming in overnight, but then we did move him to in-patient hospice. Mom agrees, it allowed her to focus on being his wife rather than his care giver.

I think there is no one correct decision, but I agree that you should ask what to expect moving forward and investigate what your options are, and how long it would take to get in home or in patient care.

Lots of hugs coming your way,
Catherine

Kathleen,

Welcome to our group. The survivor stories thread is a favorite for all of us. When my mother was first diagnosed, I spent a lot of time searching for stories on people who had survived years to learn how they achieved it. Good news is that it is becoming much more common. And, many of the grim statistics have not caught up with new treatment options. My mother started with Gem/Cis and then had Y90 radiation; she is doing well after almost 4 years,

I wish you success with the chemo- great that side effects are ok. Let us know how you make out. It sounds like you’re already doing all you can- having the tissue sampled is very improtant.

Best wishes,
Catherine

http://www.cholangiocarcinoma.org/punbb/viewforum.php?id=48

Dear Lisa,

I’m sorry, that like my family, your Mom has been diagnosed with this disease. However. is sounds like the doctors have a plan, and ideally it will lead to a successful surgery. On the inspiration” side, I would just offer that the statistics for this disease can be depressing to look at. Please if you do look, know that they convey this is a serious disease, but not as dim as they would suggest. Just in the past 4 years, many more treatment options and successes are happening. My mother’s prognosis (she couldn’t have surgery) was 12 months but she is doing great at almost 4 years.

There is hope and I wish the best for your family,

Catherine

Taylor-

What great news!! Gaining weight while on chemo is wonderful. So many posts are looking for help on how to keep from losing it. Tell you MIL that she can worry about weight when treatments are over.

Best wishes for great success,
Catherine

reports of significant shrinkage are wonderful to hear!!!!! And, I like that they have a plan for further treatment with the chemoembolization. Under the discussion board title there is a search box that should work well for chemoembolization. We have seen others have success with the treatment.

I also hope that the side effects lessen with the future treatments.

Best wishes,
Catherine