Mom with PC/ mets, many thoughts

Dear all,

My very much loved mom got diagnosed with PC with liver mets just six days ago, at age 55. Very hard news of course for our family. I'm devastated and don't know what to do really, but hope is not gone yet. I feel so helpless but would do absolutely anything to help her even the slightest.

Among all the thoughts that rush through my mind I do have some questions:

* How does the fact that she is in excellent health affect her prognosis? Does she stand a chance of having a couple of years left? And for hope- is it even theoretically possible at all to get cured from this condition (with mets)? 

* Does anyone know how PC management is in Sweden as compared to in the US (realize this is a US site though). Is it worth it to seek help overseas? I feel confident she gets the best possible care here in Sweden. Any world rankings available somewhere? How important is best possible care at this stage? (I realize that a good surgeon is important for the Whipple, but very unsure of the importance if it is palliative care that is intented).

* Anyone who knows any clinical trials she may eligible to join?

* What is currently golden standard for drugs used in palliative care at this stage? Terrified she might get the wrong treatment.

Thank you all for your help and support. I realize many of you here have experienced very hard times as well, I feel with you.

All best,

Eric

Eric,

Folfirinox is the treatment of choice-Google it,

Everyone is different but good health is a help. I think Sweden is very good in this field.

Find a specialist first and take it from there!!!!.

Ask questions until you understand. Try the Hopkins site along with this one. John Hopkins Pancreatic Cancer forum has more people with more info. Good Luck!

You can also find lots of info atwww.cancerforums.net   There I've shared our journey under "hiyasofsj" and at the John Hopkins PC site under JeffB.

My wife was 57 at diagnosis in July 2011 with stage 4 adenocarcinoma pancreatic cancer.  They found a 5cm tumor on the body of her pancreas and two 1cm spots on her liver.  She started treatment almost immediately in August of 2011 and tolerated 19 sessions of folfirinox without any changes to her blood counts and no breaks in treatment. Spots on her liver disappeared and never returned and the 5cm tumor shrank to 4mm after 6 months of treatment.  She is now over 18 months since diagnosis with the last 8 months showing no evidence of progressive metastatic disease and no tumor recurrence.  After completing the 10 months her liver remained clear and the 4mm tumor became a scar tissue. 

She's been busy vacationing over-seas, running 6 miles daily and has not had any treatment whatsoever since June of last year. UCSF calls her an "unusual anomaly of medical sciences," I call it a Gift and a Blessing from GOD.

Eric -

I can only relay what I learned as my wife battled pancreatic cancer.  I hope it helps.  She was 57 and also in excellent physical health (training for a half marathon) when she was diagnosed with PC and liver mets.  My experience was that her excellent health may have been a mixed blessing.  Becasue she was in such great shape, the symptoms, abdominal and back pain were somewhat masked so she didn't seek treatment until things were very advanced.    There is always hope, but we were unable to learn of any possible cure.  Gemzar, Folforinax and other chemo-therapies show statistical results of prolonging a patient's life by months to years.  There are many clinical trials ongoing for advanced cancer treatments.  However, there are two things to consider, time and quality of life.  Both are very personal considerations for you and your mom to discuss.  As to your question of palliative care drugs.  Palliative care generally means pain relief.  Oxycontin for longer relief, Oxycodone for fast acting relief were helpful for my wife and seemed the standard issue.  One lessen learend though was to be regular bout the pain meds and watch for increases.  If break-through pain occurs, it is very difficult to get it back under control.  

Sorry for your sad news.  Take good care of your mom and help her make some very tough decisions.  

Milloggie

On Jan 24, 2013 4:29 PM shelby1 wrote:

Eric,

Folfirinox is the treatment of choice-Google it,

Everyone is different but good health is a help. I think Sweden is very good in this field.

Find a specialist first and take it from there!!!!.

Ask questions until you understand. Try the Hopkins site along with this one. John Hopkins Pancreatic Cancer forum has more people with more info. Good Luck!

Thank you shelby1, maxxschiken and Milloggie for your kind replies!

Have checked out and registered at cancerforums and at John Hopkins now, seems as good sites too. Have not yet had time to start reading too much though, but looking forward to, amongs other things, read about your journey maxxschiken. Thank you.

Maxxschiken and Milloggie, thank you so much for sharing your stories! I'm truly sorry that you also have had to experience this nightmare. So glad to hear that your wife is doing so good maxxschiken, its a blessing. Also provides hope and encouragement as me and my family is now also going down the same road. 

Milloggie- very sorry to hear about your loss. My thoughts are with you. Thank you for sharing your story, it is much educating and appreciated for someone like me who is new to all this and trying to find many answers with almost no prior knowledge of this condition. 

Eric

I dont' know about health care in Sweden but I do know that there is hope for people with PC with liver mets.  My mother was diagnosed on 12/25/11, had the whipple procedure on 1/19/12 and was NED for several months.  The cancer come back in October of 2012 in her liver and she has been on 5-FU since then.  She CA-19 has come down.  The tumor on her liver appears to have shrink. (when she was first diagnoised you could see and feel the tumor on her stomach).  She goes back for a P-Scan on 2/8/13 and we are hopefully that the chemo is killing the tumor. 

The best thing that you can do for your mom is remain positive and to be there for her no matter.  She will have hard days ahead and will need you to remain positive for her.  Half of the battle in beating cancer is remaining positive that you can beat it.

I will keep you in my prayers and remember this website is here to help you through this difficult time in you life.

Most well renowned PC surgeon in US is Dr. Doug Evans at the Medical College of WI.  My husband diagnosed 6/2011 and had surgery in 4/12 after chemo and radiation.  There is hope, do NOT give up and keep your Mom upbeat.