Stage IV

My dad just got diagnosed with Stage IV pancreatic cancer. They are telling him surgery is not an option. I am not satisfied with taking no as an answer. Any one have any advice? We are open to absolutely any ideas, references, ANYTHING!

I have been reading a lot about dendrite stem cell therapy. Anyone know anything about this?

Also, if anyone has any advice for making this as comfortable as possible... from food/nutrition to pain to ways of staying positive... 

Thanks in advance to anyone who responds.

I am so very sorry that you have to be on this journey. I know how you feel as i just lost my dad, diagnosed Stage IV after a five month battle in January.  You may want to visit the Johns Hopkins pancreatic cancer discussion board. I is very active and you will be able to rely on much good advice and experience. If you just google it the link will come up. I wish you well.and will be praying for your dad.

Thank you for your kind words and thoughts. I am so sorry to hear of your loss. It is such an evil disease. I will take a look at that discussion board in search for more advice.

Best,

Lauren

 

 

 

On 6/9/2009 lt65736 wrote:

My dad just got diagnosed with Stage IV pancreatic cancer. They are telling him surgery is not an option. I am not satisfied with taking no as an answer. Any one have any advice? We are open to absolutely any ideas, references, ANYTHING!

I have been reading a lot about dendrite stem cell therapy. Anyone know anything about this?

Also, if anyone has any advice for making this as comfortable as possible... from food/nutrition to pain to ways of staying positive... 

Thanks in advance to anyone who responds.

I too have stage 4 pancan. I don't know anything about the stem cell therapy you mention. However, I will not accept that surgery is not possible as I have been on chemo for 8 months and just had a 5 hour octreoscan (I have a neuroendrocrine tumor that has mets to spleen and liver, my liver load is huge) and next week I am meeting with my oncologist as well as a surgeon to determine what they can do, not sure it will be a full whipple or whether it will be exploratory surgery, but I do know of many other Stage 4 pancan patients who have had surgery...so don't write it off so quickly. Call PANCAN and see if they can't hook you up with others who have been in your father's shoes and get more information. Try and get to a national cancer center that specializes in pancancer....depending on what type of pancan your father has, there is also a treatment in Basel Switzerland that many doctors refer their patients to and Swiss docs will take a look at your case to determine if the treatment would be right for you or not. It is a sandostatin treatment that is not approved by FDA YET in the US...but it is in the hands of the FDA currently.

There are so many websites to go to and many good doctors out there, don't take no for an answer...I didn't and next week will hopefully be what I have been wanting for 8 months.

Take care and please let me know if there is anything I can do for you or your dad other than pray for you both. I am loaded with lots of information.

Gail

There is an adult cancer stem cell clinical trial underway right now at the NIH's National Cancer Institute.  For the correct patient profile, it does include sugery, inc. resection of the PC tumor and mets, if required.  I have qualified for it.

Their center is in Bethesda, MD. It is an amazing place!   The first visit is on you (after they get your records and say "come on over" if you qualify) but those initial tests are covered by them. So is all surgery and flights for you after that.

 Keep in mind that all trials are experimental.

See here: http://clinicaltrials.gov/ct/show/NCT00892060

Best of luck!

My sister has Stage IV pancreatic cancer. It is exocrine adenocarcinoma. From everything that I have researched and from everything we have been told, surgery is not an option for exocrine adenocarcinoma that has metastasized. I've even brought my sister's doctors news articles about other people that were "Stage IV" that had surgery after chemo and he has told me not to confuse what may be possible for endocrine pancreatic cancer vs exocrine pancreatic cancer. Would anyone that has been told that they or a loved one has been given the hope of surgery as an option for metastatic exocrine adenocarcinoma after chemo post what cancer center is saying that is possible. Every one that we have checked with said it isn't. Thanks.