whipple surgery after effects

4 Posts | Page(s): 1 

whipple surgery after effects

by Miss_Michele on Thu Sep 17, 2009 12:00 AM

Quote | Reply

Hi,

My husband is now 62 and 4 and 1/2 years ago he had a whipple surgery at UCLA in California and he has not been the same since. He is in more and more pain each and every day. He is thinner now then he was any time after the surgery. He had his small intestiens removed, 1/2 of his pancreas removed, andall of  his gall bladder. The doctor told me after the surgery that they found it in his limp nods and he was treated with both chemo and radiation at the same time. The end results are he suffers so much now every day. He lives on pain meds ( methadone, oxcycotdon, etc) and yet the doctors can not find a thing wrong. He suffers with the pain from mid morning and it goes on all day. He sleeps and sleeps all day long , then he wakes and eats his dinner, lives on 10 gallons of ice cream a week, and from 7 ish PM every night, he then is sleeping . He cant seem to come out of this . The pain is where his intestines were and also on the surface of his skin in the same area. He cant sleep with any covers over him ( just as if it were shingles ) as the pain is so intense. I thought by now that it would let up for him but as the days go by it gets stronger the pain and stronger. Yet, the doctors have no answer at all. His blood works, all testing , everything shows up normal and nothing....This is a man who does not fake things , an educated man who misses his "life as he knew it" and I too miss him. Help please...I would appricate any help or guiding light here one way or the other. We have even tried accupucnture, reckkie doctors, fatih healers just to remove the pain to no avail. sorry about any sp as i hit the keys , I have scleraderma and my fingers are bent...sorry..thank you again for any help any one can shed some light on here. blessings always,

Miss Michele

RE: whipple surgery after effects

by Joan_l_3 on Thu Sep 17, 2009 12:00 AM

Quote | Reply

Miss Michele,

I am so sorry for the pain both you and your husband must live with every day.

Has your husband been free of pc since his surgery?  Are his labs and CA 19-9 all normal?  Does he take Nexium or Protonix every morning to keep stomach acid down to a minimum all day and does he take prescription pancreatic enzymes before all food intake?  If the answers to all these questions is 'Yes', then perhaps he needs to add Neurontin to his medication regime or he may need to see a pain control doctor.  If he has no cancer, it seems that he should not require so much pain medication because theoretically he should not have so much pain if there is no cancer. 

Of course, all the medication he is on is probably what is making him sleep so much; have you considered a second opinion from another doctor, perhaps from one of the premier pc hospitals in the US?   Sometimes a fresh perspective can see what another has missed.

I also suggest you visit the online pc support board at the Johns Hopkins website.  There is a lot of good info there from both patients and caregivers.  It's also a good place for support when you just need to vent and it is more active than this board.

Good luck and Godspeed.

Joan L   

RE: whipple surgery after effects

by Miss_Michele on Fri Sep 18, 2009 12:00 AM

Quote | Reply

Dear Joan,

Thank you so much for all this much needed advice for both myself and my husband Tony. I can't wait for him to wake up so I can ask him these questions and also do more research about taking him to a new hospital for as new prespective on all his pain and problems coming from his whipple. I have really felt that he has been in much too much pain since day one. We have talked with all of his doctors treating him and they are all  so polite but they go no further then they have to help him. My husband questioned the pain magmt. doctor about nerve damage and he agreed with my husband but the others have just shurged their shoulders and smile. They all mean well but its just not enough at this stage in our lives. I am 56 yrs old and feel like my life as well as my husbands is "over" as we knew it and its a sad statement to make but a very true one. If he can get one minuet in his life pain free its a minuet more then he has had in the last 4 and 1/2yrs.  Thank you from my heart for helping shed some light on this for me to look in another direction. I will keep you posted....

Blessings always, Michele

RE: whipple surgery after effects

by dlucas on Sat Nov 14, 2009 07:18 PM

Quote | Reply

On Sep 17, 2009 12:00 AM Miss_Michele wrote:

Hi,

My husband is now 62 and 4 and 1/2 years ago he had a whipple surgery at UCLA in California and he has not been the same since. He is in more and more pain each and every day. He is thinner now then he was any time after the surgery. He had his small intestiens removed, 1/2 of his pancreas removed, andall of  his gall bladder. The doctor told me after the surgery that they found it in his limp nods and he was treated with both chemo and radiation at the same time. The end results are he suffers so much now every day. He lives on pain meds ( methadone, oxcycotdon, etc) and yet the doctors can not find a thing wrong. He suffers with the pain from mid morning and it goes on all day. He sleeps and sleeps all day long , then he wakes and eats his dinner, lives on 10 gallons of ice cream a week, and from 7 ish PM every night, he then is sleeping . He cant seem to come out of this . The pain is where his intestines were and also on the surface of his skin in the same area. He cant sleep with any covers over him ( just as if it were shingles ) as the pain is so intense. I thought by now that it would let up for him but as the days go by it gets stronger the pain and stronger. Yet, the doctors have no answer at all. His blood works, all testing , everything shows up normal and nothing....This is a man who does not fake things , an educated man who misses his "life as he knew it" and I too miss him. Help please...I would appricate any help or guiding light here one way or the other. We have even tried accupucnture, reckkie doctors, fatih healers just to remove the pain to no avail. sorry about any sp as i hit the keys , I have scleraderma and my fingers are bent...sorry..thank you again for any help any one can shed some light on here. blessings always,

Miss Michele

Hi Michele,

I am sorry to hear about your husband. My mom, who is 79 years old, was diagnosed with pancreatic cancer in 2007. She had the whipple procedure in 2007. She had radiation and chemo treatments. My mother experienced the same things as your husband. This is a very difficult surgery to recover from. My mother has had chemo treatments twice since her surgery. Her last chemo treatment was very hard on her. My mother is now on Lifeone, an alternative treatment.  The doctor also put her on DeAromatase to repair damage to the endocrine system caused by radiation or chemotherapy. She has been on the treatment for one month and her pain is gone! She had pain in her back and right rib for months and could not sleep. She is now sleeping all night!  Things are looking good. She says she just needs to regain her strength.  About a year ago she changed her diet. She no longer eats any sweets, baked or fried foods, dairy, no meat except for grass fed chicken, fish, vegetables, and fruit. Watch her glucose level. Glucose levels are usually high in cancer patients. Doctor was surprised to see her glucose levels so low. (must be the diet we have her on) She was baking for a while and that seemed to raise her markers and make things worse. We try to see she eats more alkaline foods to keep her her body's acidic ph low, also when she was in pain we fed her anti-inflammatory diet. Stay away from foods that cause inflammation. No foods that contain GMOs.  She has been taking enzymes (vitalzym x), Q10, flax oil, natural calm magnesium powder drink, EDD Essential daily defense, BAM (Beyond any multiple vitamin and mineral supplement), Iodoral, milk thistle, spirulina,  prill beads for pure water. Two helpful websites. cancertutor.com has three phase to their treatment: PHASE ONE cancer treatment (once phase one is completed she can add some foods back to her diet),  PHASE TWO remission (kill microbes so cancer is gone), PHASE THREE prevention  http://www.new-cancer-treatments.org/Articles/StrongestTreat

 

4 Posts | Page(s): 1 
Subscribe to this message board discussion

Latest Messages

CancerCompass Poll

How often do you use a mobile device (e.g., iPhone, Blackberry, etc.) to access the internet?

We care about your feedback. Let us know how we can improve your CancerCompass experience.