Stomach pain and nausea
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Cancer has not been conquered. The “Big Five” breast, bowel, prostate, melanoma and lung cancer account for 60 per cent of cancer diagnoses and many patients continue to succumb to those diseases. Pancreatic research has invested billions in research and so far the results have been dismal.
Rare cancers such as our continue to lag behind all cancers. The cost of conducting research and the subsequent clinical trials could easily be close to one billion dollars. Given the complexity of our disease combined with lack of research and the reluctance of investor to commit funding to a rare cancer helps us understand, but we won’t agree with the process.If ever there was a time for hope, the time is here now. The current trend of DNA testing, molecular analyses, evolution of targeted drugs and most importantly, data sharing, allows us to have a a substantially more positive outlook. I strongly believe the day will come for this board to be populated with survivors only.
Hugs
MarionBhilton,
I totally understand, for most of us it is a big surprise! That is why more research and studies need to be implemented. I was going to suggest for him to get a break from chemo, as that depletes the body also, but that was already given. I feel this is a trial error treatment, as some patients respond to the standard bile duct cancer treatment and some don’t. That’s why it is so difficult and patients need to be looked at individually. Hopefully there will be more immune therapy testing and I still need to see how effective genetic testing of the blood is. Again, get a few opinions from oncologists, and I did the same. It didn’t make it easier, but at least I realize how oncologists differ on treatment plans.I am with you and experience the toughness of this cancer and as Marion stated in another posted, hopefully it can be controlled and be looked at as a chronic disease rather than cancer.
Thanks for everyone who shares!
Jrush…..your son is young and perhaps the opportunity for surgery may be on the horizon. In these cases physicians prefer to stay with plastic rather than moving to metal stents. How is he doing? What type of treatments have been offered?
Hugs
MarionDear Kim, Welcome to our remarkable family and the best place to be for CC support. Truly sorry to read about the diagnosis of your Son and that you had to join our elite group. We know when one hears the word Cholangiocarcinoma it is a whole lot to take in at one time. Here are a few items that may help you get through the first leg of the CC journey.
Knowledge is the most important tool at this point to begin the fight. When you have a chance, read some of our Members posts or if you have a question you can use our Search Engine at the top of the page. Type in a word or 2 and many posts will appear on that subject.
Make sure that the Oncologist you choose along with the Hospital for treatment, are very experienced with Cholangiocarcinoma.
Do not be shy about getting 2, even 3 or 4 opinions. This is a very rare Cancer and no Doctor will mind you wanting more opinions. Keep a folder of all test and LAB results.
May I ask where you are from and where your Son is being treated? Please do keep us updated on your Son’s progress as we truly care.
Dear Bev, I am so sorry for what Ben is going through but I am elated that he is under Dr. Valle’s Team. When you go next week you might ask the Doctor for a mild anti depressant to help perk Ben up a bit. Make sure you tell him everything that is happening including the low points. I hope you get some good news and direction at your appointment. We will be waiting to read how everything went! Best wishes.
Hi – My son who is 27 was diagnosed about 2 months ago. He too went through 3 bouts of sepsis in the beginning due to duct blockages. His GI doctor who does the ERCP procedures now does stent replacements about every 3-4 weeks. That has prevented him from the recurring sepsis. We were also told that although there are pros to metal stents they can block of portions of the liver. So, we have opted to stick with plastic stents that can be moved, replaced, etc.
Hello again,
Thank you for your useful responses
I am following your recommendations for timing of meds it makes sense when you think about how they work. Thank you Marion.
Hi Gavin,
Thank you for your comments on nausea.. Ben has tried a number on anti nausea meds and is currently on metaclopramide, it doesn’t seem to be having much effect. It is diagnosed as anticipated nausea. He is managing soft foods e.g. Porridge, smoothies, scrambled eggs, liquidized soups etc. Anything that needs to be chewed is a problem.
He was in so much pain leading up to the appointment with the consultant last Wednesday that they decided to admit him to Christie’s for test and discuss pain options. Another CT scan was done and blood tests. The pain management team suggested a coeliac plexus block which he is considering. The results of the scan showed progression, measurable increase in the lymph nodes and at the tumour site. He discharged himself on Friday evening.
Dr Hubner is planning to start Ben on Oxyplatin and 5Fu on Wednesday next week in the hope that it will bring it back under control.. He referred him to the Clinical Trials Team at The Christie. We went to the appointment on Tuesday where we learned a great deal. The consultant Emma Dean was brilliant. Unfortunately the trial wasn’t suitable for CC sufferers. However, she asked for consent to use a sample of Bens biopsy for gene analysis, which he gave. Hopefully this can open up other options.
Ben’s mood is very low and he is struggling to get out of bed.
Thank you all again just for being there.
Best wishes
BevHi Bev,
Welcome to the site, although I am sorry that you have to be here and sorry as well to hear what your husband is going through with all of this. I too am from the UK, up here in Dundee Scotland. Here is a link from Macmillan regarding constipation that I hope will be of use and interest to your husband.
As to this and everything else and also the nausea, I would definitely mention that to Prof Valle when you both meet with him next week as there are a wide range of meds that can be tried and also combinations of meds that you can try to help with the nausea. My dad suffered greatly with nausea when he had his CC and tried a load of them.
I am glad that your husband is under the care of Prof Valle’s team and that he is meeting with him next week. Your husband is in very very good hands. Please let us know how things go and my fingers are crossed for you both.
My best wishes to you,
Gavin
Bev…good luck with the upcoming appointment. Most likely you know already that opioids cause constipation, hence a vicious cycle begins. Have you discussed stool softeners prior to meal intake?
Some of the advice given by Percy:
“This is for informational purpose only.
For gas,I will take simethicone(Mylicon) 80mg-an antiflatulent,four times daily”And JeffG: “Stool softener ½ hour prior to meal
Followed by Laxatives after consumption of meal.”Fingers crossed that a solution is found and your husband can rid himself of the nagging nausea and pain.
Hugs
MarionThank you so much for your speedy responses. It is of great comfort to know this site is available to gain support and positivity from. Although, very sad to think you have all been affected by this destructive disease in one way or another.
Thank you Joan for the recommendation of Izumio hyrogenised water, I will research it in the U.K.
The oncologist my husband Ben is under is Dr. Richard Hubner. He is a member of Professor Juan Valle’s team at The Christie Hospital Manchester. We have an appointment with him on Wednesday to discuss the way forward. We are trying to get the pain and nausea under control to enable him to make the consultation. We have been advised to increase the oxycodone from 20mgs to 40mgs twice a day. Fingers crossed.
Ben was prescribed creon after his surgery but it created severe abdominal pain so was advised to stop taking it. Maybe he can try a different brand.
Thank you for taking the time to read and reply to my post.
Good wishes to you all.
BevBhilton….hello and welcome to our special group. What an incredible story you shared with us!
I don’t know referrals work in the UK, but I would do my absolute best to consult with Prof. Juan Valle, who is based in the Department of Medical Oncology at The Christie NHS Foundation Trust within the Gastrointestinal Disease Group. And, would do it soon, as he will be traveling to the US for our conference within the next 3 weeks.
Here is his information: http://cholangiocarcinoma.org/juan-valle/Regarding the flatulence: not sure this is the case with your husband, but my husband as well as many others complaint of pain post surgery and well beyond. In our case as well as hundreds of others, dietary enzymes were recommended and turned out to be of great value. We were told that following these type of surgeries, there is a problem with production of excretion of digestive enzymes in the intestine. We used Creon (pancrelipase), but your physician may recommend another brand.
I hope your husband get’s some relieve, your consult goes well. Please stay in touch. We care and we are in this together.
Best wishes and hugs,
MarionDear Bev, Welcome to our remarkable family and the best place to be for CC support. So sorry to read about the diagnosis of your husband and that you had to join our elite group. We know when one hears the word Cholangiocarcinoma it is a whole lot to take in at one time. Here are a few items that may be useful in helping you get through this first leg of the journey.
Knowledge is the most important tool we have at this point to begin the fight. When you have a chance read some of our Members posts or if you have a question please use our Search Engine at the top of the page. Type in a word or 2 and many posts will appear on that subject.
Make sure that the Oncologist you choose along with the Hospital for treatment, are very experienced with Cholangiocarcinoma.
Do not be shy about getting 2 and even 3 or 4 opinions. This is still a very rare Cancer and no Doctor will mind you wanting more opinions. Keep a folder of all test and LAB results.
I have not heard of “trapped” wind but I believe you gave the best comment at the end of your post and I will relate it to CC….and that is the fight of war and peace!
Please do keep us updated on hubby’s progress as we truly care.
Bev
I am sorry to hear about your husband’s suffering. I am new to this network.
I went on line to do some research on pancreatic cancer for a friend whose sister was just diagnosed last year, mid-June. We started her on hydrogenized water (Izumio, to be specific) about a week ago due to her suffering from the side effects of chemotherapy (lots of GI issues) and post surgical Whipple. She lost a lot of weight due to not able to eat much food or keeping it down after she ate. Since she started the water a week ago, my friend reported that she is in less pain and is able to eat and tolerate more of her meals. Still eating less than before she was diagnosed but able to keep it down. As far as I am aware there are a few people who is getting Izumio in the British isles. It had helped my husband who had basal cell carcinoma of the left ear Stage 2 and a friend, Ben, who was given 3 months in October 2014 with Stage 3 skin melanoma. Both of them are still here and my husband did not even have any chemo or radiation therapy. Ben had been cleared by PET scan x6 in the past 2 years.
Hope this info is useful to you. You can research it on google with the water name. I tried to add the company name but the computer did something and it was gone before I even finished typing the sentence.
Take care and will be thinking of you both.
JoanBev,
I am so sorry that your husband has Cholangiocarcinoma and has had such a difficult time with treatment. I don’t have specific recommendations for your request, but I’m sure others witH similar experience will respond. Weekends tend to be rather slow on this board. I just want to welcome you to our family”. This board is an excellent source of informTion and support.
Debbie
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