raylogu
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So sorry to learn of your loss, but thankful for you and your family that you had 19 months with your dad.
Regards, RayI had right hand (dominant) and leg tremors, which doc attributed to
reglan, once I stopped this the tremors went away.20 wks post op, completed 6 wks radiation and xeloda (with some interruptin due to side effects) and have a clean scan and normal tumor marker reported this week. The onocologist is recommending Gemzar which I have a difficult time deciding. With ampullary cancer being so rare, and other pathological indicators in my case I’m not convinced this is necessary at this time. I’m just starting to feel like my self again, eating better, gaining a bit of weight and more energy. At age 77, not sure I want to be knocked back down. Anyone’s input is appreciated.
regards, RayThis is VERY good information,, for those faced with a new diagnosis it provides a clear understanding of the disease, diagnosis and treatment step by step, and for those progressing through recovery you will possibly have a better undrstanding of your condition and treatments.
A Special Thanks to Gavin for sharing this!
Regards and my best to everyone!
RayI’m not certain how the Charlotte NC hospitals rank with some of the
other major cities well known facilities, but I was well pleased with my doctor and surgery experience in Charlotte NC. After recovery I asked the gastro doc how many patients they see a year with the whipple and was told only 4 or 5, yet the surgeon I was referred to has done close to 200 of the whipple surgeries.
The quantity of surgeries performed may be important, but someone had to be the first for my surgeon and he did a great job, quality of care is most important. If you are satisfied with the surgeon and feel comfortable about the hospital be certain to ask if they have nursing staff that is familiar with
caring for whipple patients, as they have very special needs post op.
My VERY best to you and your family.
Regards, RayI’ve been there, having had whipple surgery 5/25/10. this will be a very trying time for both of you, it will bring you closer than you have every been. your husband will move to rely on you to
be alert in discussions with doctors, hospital staff and home health care. With all of them stress from the surgery he will find it difficult to be able to deal with everything that will be coming at him from the medical staff. My wife kept very good records during the period leading up to diagnosis and through my recovery she continues to keep records to bring to my dr appointments. One doctor told her jokingly she was the “Gestapo” keeping such a good watch over me. Then he laughed and said, this is what we like to see. It helps the doctors to evaluate the recovery and side effects when then can see what is going on at home, by this I mean nausea, med side effects, appetite, temperature, blood pressure, etc . When I look back and we talk about things, I hear myself saying “I don’t remember that”.
The diagnosis is like a kick in the stomach and it is traumatic, but you will both find so many caring people to reach out to through this experience.
My best to you both, Ray / North CarolinaI take metamucal fiber capusles, one before each meal, says you can take up to 6 per day. But as others state the fluid intake is critical.
Using the metamucal and lots of liquids relieved the problem for me.regards, Ray
It is so nice hear your dad is receiving loving care at home and enjoying
the little things in life like a slice of pizza.. May you have many more
days of loving memories with your dad.
Warm Regards, Ray – North CarolinaWhat great news! You are an inspiration to me as I finish my radiation this friday.
Thanks and good health to you! Ray
my tumor was 2cm and located in the ampulla of vater (which was a new word in my vocabulary). whipple surgery removed the tumor completely although it did rupture through the small bowel and spread to one lymph node. what a difference in my 2 cm tumor and Lisa’s 2cm tumor as she described. location is the difference in treatment vs surgery. my best to you and your family. I too had a stint prior to surgery to open up a collapsed bile duct causing jaundice. the stint was removed during surgery and so far, 11 weeks post op I’ve not had any reccurance of jaundice.
my best to you and your family. recovery is a long process. keep in touch with this site and you will many words of encouragement, advice and support. my best to you and your family.. Ray, North CarolinaSounds like your BPlow reading is much the same as mine. I am seeing a cardiologist next week just to confirm my heart is still as good as it was when he gave me the cardiac clearance for surgery in May. worst fear is there is some weakness in the heart from the treatments.., mine did not go back when off the xeloda, I’ve been off a full week and a half due to stomach problems.,
just pray the fact that I feel good is a good sign.
thanks for your experience, helps to know others have had same situations.
my best to you, Ray, north carolinaThanks for the replies, not sure what I’ve updated on my findings with the dark stool, but an endoscopy last week revealed stomach erosion, probably form the Xeloda. Slight bleeding (slow) in the stomach lining and at the
site of the sutures. with the 3 meds given for the stomach problem I am feeling better and no dark stools in 7 days.
thanks for everyone’s replies.
Regards, RayKate, thanks for sharing that with me. I know when I was in the hospital recovering the surgeon wrote the order to withhold BP meds if diastolic was under 80, which it usually was so I did not get the med. But once I got home
and stirred around more and ate better I did require usually at least 1/2 of dose. fortunate I never got dizzy since I’ve withheld the med when low. I do use the udder cvream, not so much on the hands, but my legs from knees to ankles, which got rough as sandpaper. My doc did not put me on a cyclel , rather had me scheduled on for 6 weeks straight, but I had to stop after 2 weeks due to stomach erosion. the black stool tipped me off something wasn’t quite right. I will see the hematologist monday about resuming Xeloda and probably at a dose lower than 1500 mg 2x’s daily. Did your dad take radiation with his Xeloda? I have continud my radiation without Xeloda and am on 3 meds for the stomach erosion. I too have the diarrhea without warning. I take metimucil capsules (2) daily and even though it is a stool softener with fiber, a nurse told me it will firm up the stool, so I haven’t used anything for the diarrhea and it seems to clear up on its own. My wife does push a piece of cheese on me when it flares up.
my best to you and your family!
Regards, Ray, North CarolinaI was given Tigan with the 2nd endoscopy and it worked quite well. After whipple I continued to use once dialy as needed and while on the xeloda/radiation treatment have resumed use as needed. it acts on the receptors in your brain that signals the nausea.
regards, ray
