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La fundación de colangiocarcinoma (CCF) ahora ofrece servicios de traducción en Español. Por favor publique sus preguntas en Español y un intérprete le va responder.
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The delayed gastric emptying resurfaced and is complicated by SIBO (small intestine bacteria overgrowth) .
I cannot take Reglan due to side effects, so my wife to the idea to try a tens unit to stimulate the vagus nerve and jump start the stomach. IT WORKS !
Hope this bit of info is helpful to someone.
My best to everyone!
So sorry Ritchie is not doing well, I know how down one can feel and how nice it is to feel a bit better. My oncologyst recommended the gemzar after I completed the Xeloda and I declined to take it. Since I had a tough enough time with the Xeloda I decided to take my chances that the xeloda and radiation did the job. I'm 78 years old and didn't want to cause more complications than experienced from chemo and radiation. I developed calcification of aortic valve and renal artery from the treatments. Any more treatment would have worsened an already bad condition. It was adjuvant therapy only... just in case they missed something, and since my tumor markers were in the teens decided it best to try to conserve the heart and kidneys that suffered from xeloda and radiation. I'm moving closer to my one year mark and still encouraged by my recovery. Once Ritchie is past this rough patch, I feel certain he will find the correct tolerable course of meds/treatments to get him back on track.. and hopefully ready for surgery. I have read remarkable stories of patients that had success with downsizing tumors in preparation for surgery. Stay Strong!
Best wishes, Ray
Oh.. forgot to mention I take Tigan for nausea. It is an old time med and not prescribed as much today. My gastro doc gave it to me and it works great for me. I took one pill in advance of radiation and it kept things calm
The oncologyst recommended something else but I declined any other prescription since this worked so well.
I had radiation and oral chemo (Xeloda) concurrent 5 days a week for 8 weeks. I finished up in Sept 2010. I experineced nausea, diarrhea, lack of appetite and was tired. ALthough I took the radiation treatment in the afternoon and was well enough the next day to work 1/2 day in the morning. Rest when you are tired and eat when you can and you will make it through. After completion of treatments I still have a time gaining weight, but remain in otherwise good health. The Xeloda did cause some stomach errosion and had to discontinue a few weeks to threat that problem and have to be careful what goes in to keep the tummy in good shape. Most recent I was prescribed a mega dose of vitamin d and that caused a set back with my stomach so I'm back on meds to coat the stomach and eating light and soft foods again. My best to you! Ray
I have had a CT report of a cyst on my liver since '07 and had the whipple 5/2010. most recent MRI this month still shows cyst on the liver and doc seems not concerned, even though there is now evidence of some fluid in the area of the cyst. The MRI shows everything else looking good.
The sun is only source of vid that causes no side effects internally, although the skin can be adversely affected. Sun screen blocks the rays so it will not give the desired vit d. 20 minutes in sun every day should give enough. I will keep everyone posted on how my vit d does after being rechecked in a few weeks. I believe fact that past months of winter prevents me from being outside and last year starting in May when I got sick I did not have much outdoor sunshine at all from May '10 to present. I usually golf and do alot of other things outside, so will get back on the deck and roll up the sleeves and hope the d comes back up.
the ensure gives me a bit of vit d as well.
take care! Ray
My Vit D count was down to 21 and 3 months later down to 12. Internist Doc prescribed 50,000 units vit D twice per week. First pill taken I experienced severe gastric distress within 12 hours of taking the pill. I lost 6 of the 8 lbs I gained within a week, and when I saw the internist that prescribed the Vit D mega dose he did not think it could have caused the stomach pain. My wife thougt it burned my stomach from the sudden reaction, particularily since I was doing great, eating what I wanted with no discomfort. Referred to the gastro doc and he did an endoscopy which revealed (no surprise) my stomach was red and swollen and lower esphogas was irritated. I'm on carafate and omperazole and getting some relief. Back on ensure, eating every 2 hours and guarantee I will research any and all new meds thoroughly before putting in my mouth or accepting an injection of any kind. I am 78 years old and the recommendation for Vit D is to start at low end of dose for geriatic patients and monitor closely for improvement, which my doc did not do. He gave the mega dose and said to come back in 4 wks.!! Thankful for an alert wife, who noticed my diminished appetite and grimaced look on my face...only took the one pill and got to doc promptly.
I am 9 months post op and other than this episode continue to do quite well. Good news from this episode is the gastro doc said the healing at the connection sites from the whipple look best of any he has seen. I will work on getting direct sunshine on the deck and tossesd the idea of any vit D supplement. I know everyone reacts differently to prescribed meds, just an FYI in case anyone else sees a similar reaction from Vit D. Thanks to everyone for all of your sharing and caring, this site has truly made a difference to me thorugh a difficult journey to recovery.
Regards and my best to all, Ray
You will find the whipple to be the most difficult surgery of all, although it is a difficult recovery, since appears you caught this early and I hope and pray you will be a success story. See my post on cancercompass.com named as Raylogu.
I had the whipple 5/10, am 9 months post op and doing great. I was 77 when I had surgery, and find encouragement every day from survivor stories. I keep in touch with a lady that had whipple in NH and she went to a whipple support group recently where they have 5 and 10 yrs plus survivors. Also if you google 100 yr old whipple survivor, you will find a lady that had this procedure in late 80's and she was doing great last I read.
Any questions you may have, please feel free to contact me directly at my
regards, Ray Lagueux, NC
My brushing biopsy came back suspicious only, but during the ERCP the gastro doc was able to see what appeared to be a tumor pressing from behind and ordered the MRI, which showed the ampulla mass. He put in a temporary stent to clear a blocked duct. Surgery was scheduled on an emergency basis since the mass was caught so early. Fortunate 6 months post op I am doing well after 6 weeks oral chemo & radiation. I would request scans or MRI's, as the ERCP can't see all. Even though mine was caught very early (surgeon said earliest he has seen) from time of scan to surgery the tumor had eroded thorugh bowel wall and
some cancer cells in one lymph node (regional). Also the blood work reflected everything very high and off the charts, which indicated serious problems. SInce surgery all lab reports are back to normal with exception of
vitamin D, which is low and white blood count low, both attributed to chemo and radiation.
if there is any weight loss or disgestive discomfort don't settle for a stent only, press on with the doctors.
my best to you and your family, Ray
So glad to hear news of of your good results.
The dream is soo inspiring, the mind is amazing.
my best to you both, Ray
Welcome to the group, sharing, learning an caring is what we are all about.
Don't hesitate to ak questions, no two cases are the same and I've learned so much since I first learned I had ampullary cancer.
my very best to you and your family,
WONDERFUL NEWS! Quite an inspriation to me, as I am 5 months post op and received first clean scan and good lab reports 4 weeks ago.
Wish you many.. many ...many more years of good health and wonderful years together!
I had Xeloda with concurrent radiation for 6 weeks, which started 8 weeks post op. The Xeloda schedule was 6 weeks straight with no break other than weekends. By the 3rd week I had stomach distress, diagnosed as
erosion, slight bleeding. Had to stop Xeloda 2 weeks to heal stomach but continued radiation. I finished treatment 5 weeks ago and am feeling great. My appetite is almost back to normal, tasting things I thought tasted bad or had no taste before. Please ask about cardiac evaluation prior to treatment. Radiation and chemo is hard on your body and I discovered during the course of treatment I developed mild calcification of the aortic valve and a slight mitral valve problem. This from comparing the echo cardiogram done prior to surgery with the echo done 5 weeks into treatment. My wife suggested I see the cardiologist because my blood pressure, which normally is high was LOW without BP mediation.
Investigate any and all discomfort / new symptoms and signs of problems
immediately. In the case of the cardiac problem, most don't see the cardiologist until they have symptoms from the problem, fortunate I discovered mine early. With this knowledge I decided NOT to take the recommended 2nd round of chemo which would be infused Gemzar.
my best to you and your family.
regards, Ray / North carolina
Totally understood, Ray. You get on with gaining your weight and recovering proerly from the surgery cos the xeloda will have at least stalled that. May you have no more inpatifnt experiences. Are you continuing to improve now treatments are ended?
Thanks for your support, yes I am continuting to improve since finishing treatments. My last radiation was 9/3/10 and the Xeloda at lowest dose (500mg 2x's daily) was discontinued the same day. Some days when on Xeloda I took 1500 mg only once a day due to side effects, but most days I was able to tolerate the 1500 mg 2'x daily for up to 3 weeks. But after stopping completely for 2 weeks due to stomach bleeding, even 500mg of Xeloda caused side effects.
Anyhow is great to be off that stuff and I am enjoying feeling better, I have enough interest and energy to walk our two dogs several times a day and
am still working 4 hours a day as a design engineer. The work has been good to keep my mind active.
regards and my best to you~! Ray
Ray, you should be posting in the good news section! Brilliant news on your scan results.
Of course it's such a personal decision about starting on Gemzar. If my dad was offered it I'd encourage him to give it a blast (he's in pretty much exact same situation just a few weeks ahead of you - plus he's only 59 and was in extraordinary health before all this). Does the oncologist give any reasons why he's recommending it? If there were suspicious nodes or high markers then you could understand. If you start chemo you could always stop it if it wasn't worth it for quality of life.
Good luck with your decision and enjoy your clean reports.
I am more concerned about the aortic calicificaiton that surfaced during treatment. Comparing an echocardiogram done in May to one in August there is definite damage from treatments of radiation and Xeloda. I will move with great caution before I jump on more chemo, I know the whipple is the toughest surgery recovery, but I don't want to experience how easy heart surgery would be as compared to whipple. I too was in good health prior to this, in fact this was my first in patient hospital stay.
my best to you and your family! Ray
Ray.....congratulations. You did it. Enjoy. Ray, I am wondering. Why the switch from Xeloda to Gemzar? Is it expected for you to tolerate it better?
The Xeloda built up in my system, had to stop this after 3 weeks and when resumed 2 weeks later still had difficulty with the lowest dose.
My thought is the toxicity to Xeloda (probably due to age/ 77) the effects of xeloda would have been stronger than expected so hopefully it knocked out
the ugly cells more quickly. I was told the Xeloda was the easiest to tolerate
when I started this, and now the onocologist tells me the Gemzar is easier to tolerate. I have hesitation knowing Gemzar is infused, once it is in I have to suffer the effects, with the Xeloda I could stop a pill at my discretion.
Tough decision, but from what I read looks like the stats for ampullary tumors with surgery give odds of 50/50 of recurrance with or without the chemo/radiation. At my age, I will drag out the double sided coin, both sides are heads... and take my chances! Thanks for everyone's input, is very helpful to me and my family. Regards, Ray
I had similar symptoms from Xeloda and was determined after only 3 weeks of xeloda I had stomach erosion, slight bleeding in the stomach.
The gastro doc treated with two meds and I am now fine, he later recommended Align ProBiotics which has given much improvement in my digestive discomfort.
my best to you, Ray
So sorry to learn of your loss, but thankful for you and your family that you had 19 months with your dad.
I enjoyed your blog and admire your attitude!
You are truly an inspiration to me.
my best to you and your family , Ray
I 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.
This 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!
During the process of radiation and oral chemo (xeloda) my blood pressure
was low and I did not require the usual blood pressure med taken for 20 yrs. I had an echocardiogram prior to the whipple for a cardiac clearance for surgery and no evidence of aortic stenosis was revealed. Now 17 weeks post op a 2nd echo reveals aortic valve stenosis.
I have no symptoms of cardiac insufficiency at present and will discuss this further with the onocologist next week.
Regards and my best to everyone!
I'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.
I'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 Carolina
Posts found: 1 to 25 of 39
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