• From: New Orleans
  • Registered: Sat, 15 Sep 2012
  • Posts: 14

Topic: Hello and Thank you

Very grateful for this forum. My 76 year old father was diagnosed in September 2012 with this horrible disease. Prior to this whole ordeal he was a healthy person. Just this summer he traveled through several countries in Europe with the family.
His cancer is stage 4 and has spread to a few nodes and the lining of the stomach. We has a metal stent and has undergone 2 cycles (6 treatments) of gemcitibine and cisplatin.
Today we are in the hospital since he started vomiting and Developed a fever on Friday. The doctors are trying to find the reason for the fever and are trying to put a tube down his throat to pump the clear mucus he keeps vomiting. However they haven't been able to get it all the way down without him pulling it out. He feels he is chocking. The doctors are saying that is his only option at this point and that we should start looking for home health care since the duodenum is being constricted.  We are currently located in New Orleans but have everything set for him to receive treatment at Standford which is near where my sister and I live. 
Anyone have any alternatives on how they could empty his stomach ? He isn't vomiting now. Also he hasn't had a bowel movement in over 5 days.

Thank you,
Barbara

  • Lainy
  • Lainy
  • Moderator
  • Offline
  • From: Phoenix AZ
  • Registered: Fri, 13 Jan 2006
  • Posts: 8,199

Re: Hello and Thank you

Dear marinmommy welcome to our elite club that no one wishes to join. I am terribly sorry about your Dad and what he is going through. My first reaction is to call another ONC in on this or let Stanford know what is happening and see what they suggest. I have not heard of this before. How is your Dad going to travel to Stanford? At least the vomiting has stopped. Have the Docs ruled out a bowel obstruction? Hopefully some more Members will pop up today with some answers for you. Please keep us updated.

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: New Orleans
  • Registered: Sat, 15 Sep 2012
  • Posts: 14

Re: Hello and Thank you

Thank you Lainy. We were going to have him and my Mom fly (first class) this Thursday. Still hoping we can. He had chemo on Monday and was fine all week until Friday evening. Good idea on calling Stanford.  I've been asking the nurses and doctors about the fact that he hasn't had a bowel movement all week but it seems they don't think that is an issue since they don't see an obstruction. Even though last time this happened the vomiting and hiccups went away once be had a bowel movement.

I've been here with my parents since Sept but am flying back to San Fran with my little girls tomorrow so needless to say I'm very nervous and worried about leaving them. There are other family members here but my sister and I are the main managers of his care.

Barbara

  • Registered: Fri, 15 Oct 2010
  • Posts: 1,733

Re: Hello and Thank you

Hi,
To move near Standard is a good decision making ;I hope you can do it ASAP.
Since your father had a stent to put in; the fever may be related to the stent  and I suppose the doctor know about it. Cipro 400mg twice a day or Levaquin 500mg daily for 10-14 days are the logical choices for cholangitis due to the stenty insertion. But I am not a doctor, I am only a patient ;so your should consult with the doctors there.with regard to constipation,it is one of the side effects of the GEM/CIS regimen. Use OTC medications like colace,sennkot-s,or Miralax ,Dulocolax etc may be your choice;but ask the doctors or the pharmacist in the drug store first before using them. Hydration(thru intravenous or by mouth ) is also important,6-8 glass of fluids per day to keep body hydrated is essential if the patient can take it.
Ask for 2nd opinion(a second GI specialist who is not belong to the same GI doctor group as the first doctor)about your dad's disease condition if the move to Standard plan is delay.A skillful doctor will make a big difference in the medical treatment and procedures.
God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.
  • Registered: Fri, 12 May 2006
  • Posts: 8,157

Re: Hello and Thank you

marinmommy....welcome to our site. I am wondering: have they run a blood culture on your Dad?  I am also concerned about the lack of bowel movements?  Clearing his bowels might be something you would want to discuss with the physician.  I have learned that stomach metastases can cause blockages and will lead to vomiting similar to what you are describing.  It may be at a point where nothing is passing through, but clearing the bowels might help. Hang in there and be vigilant.  And, please keep us posted.  We care.
BTW:  we live close in vicinity.  I am in Sonoma County.
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
  • Lainy
  • Lainy
  • Moderator
  • Offline
  • From: Phoenix AZ
  • Registered: Fri, 13 Jan 2006
  • Posts: 8,199

Re: Hello and Thank you

Barbara I am hoping for the best and you should keep thinking that you will see them in 3 days after you leave! Since you and your Sister are the main Caregivers, perhaps you should leave a list of Doctors and phone numbers along with anything else you can think of, for the others. Also is there anything you feel you need to notify the airline of? Like, is he on Oxygen? Again, wishing you the best.

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: New Orleans
  • Registered: Sat, 15 Sep 2012
  • Posts: 14

Re: Hello and Thank you

We have notified the airline that we will need a wheelchair. No oxygen needed at this time.

I also think it would be very helpful if the bowels are cleaned even if there isn't a blockage.  I've been a little aggravated that issue isn't being focused on. They have attempted to insert the tube 3 times without success. They Are going to try again this afternoon using a numbing spray in the throat.  Last night I convinced the nurse to ask the doctor to order an injection for the nausea vs. the pills since he was vomiting which they did. I also questioned giving him laxatives orally since he was throwing up continously but was told there was no other option.

Blood cultures were taken of the port, urine and blood. Waiting on the results.
Last time he was hospitalized last month, the GI doctor did an ERCP, changed his plastic stent to a metal stent and took a biopsy of the tumor located in and around the liver and bile duct. He said he believed the infection was in the necrotic portion of the tumor not the bile duct itself. The biopsy did not reveal anything conclusive.


Thank you!
Barbara

  • Registered: Fri, 12 May 2006
  • Posts: 8,157

Re: Hello and Thank you

Barbara...Frankly, I am confused regarding the clearing of fluid.  Are they trying to empty his stomach?  His lungs looked clear, right?
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
  • From: Roanoke, VA
  • Registered: Fri, 05 Oct 2012
  • Posts: 87

Re: Hello and Thank you

Welcome to this site, marinmommy
My husband also had constipation issue throughout his illness. Glycerin suppositories (Fleet) worked the best for him. Did they try suppositories or enemas? There are also suppositories to prevent vomiting (promethegan), that he can try.
Hope it works!
Alla

  • From: Uniontown, Ohio
  • Registered: Fri, 23 Sep 2011
  • Posts: 1,487

Re: Hello and Thank you

Hi Barbara,

I wanted to welcome you to this site and say I am very sorry about your Dad. I cannot help you with the problems your Dad is having since my daughter has not gone through this. I am hoping the doctors can find the problem and help him to feel comfortable and pain free.

Hugs,
-Pam

Hoping for a miracle for my daughter, Lauren.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

Pamela's Website

  • From: New Orleans
  • Registered: Sat, 15 Sep 2012
  • Posts: 14

Re: Hello and Thank you

They wanted to take all the junk sitting in his stomach out because it isn't going through the intestine.

Finally yesterday afternoon they were able to get the tube down his nose and throat.  They ended up using a numbing spray in his throat and a gel in his nose. Once the tube was in he quickly filled up a container full of undigested gunk. He is feeling 100% better but without any nutrition going in, he was given blood today.

They didn't try enemas since his blood count was too low to risk a cut (sorry, TMI).

Didn't know about promethegan! I will keep in mind next time.

Thank you everyone! I'm back in California and praying I see my Dad soon.

Barbara

  • Registered: Fri, 12 May 2006
  • Posts: 8,157

Re: Hello and Thank you

Glad you made it home safely, Barbara.  Please keep us posted - we care.

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