marylloyd
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Andy,
My husband has had 28 ERCPs over the past 4 1/2 years. They are definitely better than surgery but do have their hazards. He has gone off and on without stents for months at a time but they are currently keeping his in because of infection issues. He gets his changed every 10 weeks. Just make sure they give you oral antibiotics to take after the procedures. That seems to keep him from having any problems and it sounds like infection is already an issue with you. Take care. I hope things work out well. MaryDear Susan,
I am so sorry for your loss, but what a blessing for Randy to have gone so peacefully with his beloved family around him. Our thoughts and prayers will be with you and your family. MaryCongratulations, Sue! I hope you have many, many years of great health! Best wishes for a clear scan! Mary
Hi Patty,
Great news! It does sound very confusing. What about asking for an MRI next time? My husband’s Drs. prefer MRI’s, they feel they show things more clearly than even a PET scan. Tom has also had CAT scans through the years and it makes us feel better when the results of both are the same. This is a very strange acting cancer. He has had no sign of tumors for over 4 years , yet his tumor markers bounce around all over. Have you ever had a biopsy of your tumors? I hope things continue to go well for you. From the beginning I have heard of some people basically being able to treat this as a chronic condition. I think you and Tom are in that category! Take care, MaryFern,
I’m sorry you are having such a difficult time. My husband was diagnosed in June ’06. He was unable to have a resection so also had 5 weeks of radiation along with Xeloda followed by 3 treatments of brachytherapy. His tumor went away and has not shown any evidence of returning after repeated biopsies, including some just a week ago. We feel he is cured, unfortunately because of his tumor markers also rising the Docs aren’t too sure about that! Tumor markers are basically a pain! They jump up and down due to many different causes, not necesarily tumor regrowth or activity. My husband’s jump up into the thousands when he has infections, which he gets due to scar tissue in his ducts. He needs stents off and on when these infections occur and usually the markers go down but never to where they should be. After years of stressing about them we really don’t care what they are any more! Your mom’s elevation may simply be due to all of the infection and inflammation she’s dealing with. If they can get get the infections under control with antibiotics and proper drainage then they may actually drop back to normal. I am worried about whether she’s being treated by Drs. who are experienced with cc and by Drs. experienced with performing ERCPS and placing stents. I think it makes a big difference to be at the right facility when it comes to treatment. Also, whenever my husband gets sick we call the Dr. and he is able to be admitted directly and not through the ER. WE went that route last year when he became septic after an ERCP and we said never again! What a stressful, long day. Talk to the Drs. about being able to do that! It’s very important to get those antibiotics going as soon as possible. Don’t be afraid of being outspoken when it comes to your Mom’s care. I have a reputation for being kind of a pain in the you know what, but my husband’s still here almost 5 years later so I really don’t care what anyone thinks. Everyone needs an advocate! Take care and I hope your mother gets things straightened out and begins to feel better. MaryHI Andy,
I am also glad you are still doing well. I like to point out your story and my husband’s story to people who feel all is lost if they can’t have a resection. It’s really too bad that they inserted the metal stents right away. We fought that right from the beginning and only agreed to plastic stents when necessary because the metal ones would become permanent as yours now have. The only thing I have heard of is flushing the metal stents or putting plastic ones inside which will have to be changed on a regular schedule-usually every two-three months. My husband is going in for his 27 th ERCP on Weds to have his plastic stent removed. It is a real worry every time because of the possibility of infection but it is what it is, just something we have to deal with and you may have to too. I know you have done a lot of research on things but diet is important when dealing with stents. One of our old friends here years ago told me that dairy products can cause the stents to clog quickly because they cause more mucous to be produced during digestion which can cause a backup in the ducts. None of our Docs had ever heard about this but it really is true. If Tom eats too much dairy, cheese, ice cream, high fat content products, etc. he gets sick and if he has a stent in, usually will need it changed. If he doesn’t have a stent in he will still get sick and have some blockage but by drinking lots of fluids he can usually flush his system out. He fought the idea of not eating dairy for a long time but really doesn’t want to get sick so is very careful now. I don’t know if any of this helps, unfortunately there isn’t much that can be done. Have they biopsied the tissue at the stent site? Take care and keep the good news coming! MaryTom,
Believe me I understand about getting down. My husband had an attempted resection and when the surgeon came out and said he couldn’t do it we were devastated. We thought that was the end. Fortunately at OSU, they use a team approach and all of the specialists were called in to review his case, Surgical Oncologists, Radiation Oncologists and Medical Oncologists and they put together a very aggressive treatment plan for him that worked. Has Ben seen a Radiation Oncologist? Not everyone is sent to one and that bothers me because all of the specialists approach treatment differently. It was really interesting at the time to deal with the three different doctors and teams. I found the surgeons and radiologists to be the most optimistic. They were all great but the Medical Onc. basically pushed chemo more and we weren’t and still aren’t too keen on that. Take care and best wishes for Ben. MAryTom,
I’m sorry that I can’t go back through all of the good news section to point out everyone- I have horrible internet service and it just takes too long to go back through hundreds of posts. I don’t know about being stage 4. My husband was never actually told what they considered him. He was told he would only have 6 – 18 months with or without treatment. Anyway, look up Andy from Britain, someone from Vancouver wrote about their father who had received no treatment and was four years out. Lisa is three 1/2 years and did not have a resection. Someone actually wrote the other day about doing well, staying stable, for at least three years now and they did not have surgery. There are others that have posted through the years. I don’t know about moontje. They were doing alternative treatments but her Tom may have had surgery eventually. I spoke to a woman I met at a flea market that told me her husband had been living with cc for over 4 years and had remained stable and doing well. He could not have treatment because of cirrhosis. Andy and my Tom are the only ones that I know of that have had their tumors actually go away, but the others have remained stable and are doing well without going through the ordeal of surgery. Someone just said the other day that their surgeon told them there was a fifty per cent chance of the tumor coming back even with clean margins. It really seems to depend on whether the cancer is aggressive or not. If it is the aggressive type then I’m not sure there is anything anyone can do. My point is that surgery is great if you can have it but I’m not sure that it is the only cure. You shouldn’t lose all hope if it isn’t possible! Take care, MaryBob,
That is a good one that I’ll have to remember!It’s fuuny because my father-in-law was a large animal veterinarian and was out on the road at all hours so he always kept candy in his car to help keep him awake and also had his car aligned so it would intentionally pull to the right in case he took a nap while driving, which he often did!! He aged a little more gracefully than my Dad though and always had one of us drive in his last years. My Dad was a truck driver for years and has a lead foot. He is a very scary driver but I don’t know what to do about it other than to never ride with him again!! Take care, MaryHans,
Have a safe trip home. We really appreciate your staying in touch through these difficult days. Often after we lose one of our good friends we never hear from the family again and it is wonderful that you feel free to come here and share your thoughts and activities with us. It helps us to take part and memorialize Kris even though we can’t physically be there for you and her family. It’s wonderful to have such good friends and a wonderful family to help you. Memories of Kris are endless. I have been playing back a lot of them in my mind lately. I always enjoyed her banter with Peter. They had a special connection. I hope they have met and are having a party right now along with all of our other dear friends! Take care of yourself Hans and thank-you again for keeping in touch. Love, MaryKathy,
My husband is a 4 1/2 year survivor and remains cancer free. He is a rare bird because he was unable to have a resection but had very intense radiation along with Xeloda which killed the tumor. The Drs. were shocked by this and so were we but there are no signs of recurrence whatsover and he has regular ercps and biopsies done of the original tumor site. I don’t know if anyone will ever tell him he is cured. I agree with Bob that it probably is more like the 10 year mark with this type of cancer than 5. You can’t spend your life worrying though. My husband has never worried! He said from day one that he would just leave that up to me. I used to worry all of the time but over time I’ve relaxed and am just grateful he’s had all of these wonderful years! I am a believer in diet and supplements. I’ve relaxed on some of that too, but he he has always been a good patient and takes everything I give him. If he ever balks at something I just point out that he’s done pretty well so far so!! Take care of yourself and try to do as the others have said and enjoy every day! None of us know when our time will come- I rode in the car with my 85 year old father at the wheel the other day and thought maybe it was going to be curtains for me. Best wishes, MaryWonderful news ,Moontje. I hope Tom continues to have great health and positive news for years and years to come! Mary
Hans,
Thank’s so much for sharing your loving story with us. I was already on the board when Kris first started posting and feel honored to have had the pleasure of knowing her and you through this site all of these years. We have lost many friends here through the years but Kris was truly one of a kind! Losing her breaks our hearts, so I can only imagine the pain you are feeling right now. Please know that we are here for you and that we will always treasure Kris’ memory. I hope that all of your wonderful memories provide you peace and comfort. Take care of yourself and let Kris’ family know that we all send our condolences as well. Love, MaryMarion,
We all need to thank you, too for all of the time and support you provide and of course, the knowledge! Yes, we have been through a lot on this board. While we were going through our acute phase of treatment I was reading about your husband and Mark Clements and Valerie McCrea and so many others gone but not forgotten. It was sad to deal with those losses then and scary because I really felt Tom’s case was hopeless. Of course after all this time he is still here and doing well. As I said before, there is no rhyme or reason to any of this.
Ben,
My husband did not have a surgical resection and is still here and doing well. In fact there are others on this board that did not have surgery and are doing very well. Many have had surgery, like Kris, only to have the cancer recur, sometimes very quickly! I personally don’t believe surgery is necesarily a cure. At least not the only cure! I am a strong believer in diet and supplements as far as this cancer is concerned and radiation!! A lot of Docs don’t believe in radiation because of the damage it will do but the liver will regenerate and I believe any damage will eventually repair itself. Scar tissue is an issue but it is with surgery as well. I don’t really like the chemo approach but it has helped some. Take care. MaryMarion,
Those three, plus so many more! There were so many that helped me and Tom when we began this journey 4 1/2 years ago. They are all gone….. I feel so sad that it’s hard to come on here any more. We constantly have new members but I feel bad that all of these new people will never know Jeff and Peter and Kris and Teddy and Kristen and Jerry D. and Caroline and on and on. They all had so much experience and wisdom and wit to share and they did so selflessly. It really seems hopeless… this cancer is a monster. I’ve had experience with other cancers that can actually be “cured” and people can rest easy that it won’t return. I don’t think that’s possible with this one. You always have to look over your shoulder and wait for the hammer to drop. Tom will be five years out from diagnosis in June and I just wonder every day when we will get the bad news. Every gas pain, bout of heartburn, nausea, chill, makes me think the good times will be over. I honestly don’t see how they can continue very long. This cancer is relentless. The Drs. have always said so and unfortunately I’m afraid they are right.
I’m sorry, Kris’s death has really hit me hard. I knew it would. It seems so unfair for so many beautiful people to die so young. There is no rhyme or reason to any of it…. just tears. Mary
