January 11, 2008 at 2:37 pm #14834candyzParticipant
My brother is having procedure today to try and stage him…does anyone know how strong the Cleveland Clinic is with treating this disease? We’re wondering if we should be looking elsewhere?
CandyJanuary 22, 2007 at 4:13 pm #14832kate-gMember
Best of luck Jeff! Hope it all goes OK.January 21, 2007 at 6:54 pm #14831rider97Member
As I said my husband had his first round of chemo on Thurs. along with having his porta-cath put in the sameday. He was a little short of breath on Friday and body aches all over. He felt a little better yesterday, but is not feeling so well today. His bones all ache and he says he feels like he ran 10 miles. Hopefully, things will get better. I am concerned since this is first treatment. We will definitely continue to keep fighting and maintain our positive attitudes. It is nice to talk with someone who understands what I am going through. I moved my original post to introductions. I think I had entered it under the wrong topic.
CathyJanuary 21, 2007 at 3:08 am #14833jmoneypennyMember
I think you’re doing all the right things, and most importantly, you have a great attitude! At 37, you ARE too young to have to deal with this! And at 37, you have the best chances of beating this terrible disease. Please let us know how he progresses with the chemo – my own mother didn’t tolerate it well, but she’s 64 and extra-sensitive to all drugs, so I’m sure your husband will be different. I’m sure you’ll beat this thing – keep on fighting!!! – Best of luck to you — JoyceJanuary 1, 2007 at 2:46 pm #14830
Ny husband actually had surgery on a Fri but it was during the summer . OSU is a teaching facility so the Drs. are on staff as researchers and teachers plus they have patients to see, clinic etc. They don’t have as much time as private practice physicians to schedule surgery. I am surprised that they limit it to 1 day per week though. I think you are being wise to send your info to the Mayo Clinic. They seem very experienced at treating this , ecspecially surgically. Good luck. MaryJanuary 1, 2007 at 1:24 am #14829
Jeff, thanks for the info on the Dr. at Mayo. We do have surgery scheduled for Jan. 24 here at the James, but the Docs there know we are thinking about going somewhere else to get their opinion. We are leaning towards staying here though. They wanted to get him on the surgery schedule though, in case we stayed here. They only do surgeries on Wednesdays – I was kinda shocked at that. This big cancer hospital and only surgeries one day a week?
I am going to email this Doctor. I have Jack’s (husband) MRI report so I can type that to him.
Thank you so much for his info. I am truly grateful to all of you who are so willing to help and offer advice and info. With us just starting out this process, I feel so thankful for all of you.
KrisDecember 31, 2006 at 11:56 pm #14828
Kris: I see you have surgery scheduled for your husband already. I did find my business card for Dr. Nagorney. Here is his infor if you choose or want to use it. His Tel: 507-284-2644, Fax:507-284-5196, E-mail:firstname.lastname@example.org
You can tell him a former patient referred him to you. He has always responded to my e-mails. I typed my full Ct results to him and got his opinion just a couple months ago about possible surgical resection again but beings it had spread to my lungs, he told me it would be a high risk pallative surgery and really wouldn’t reommend it; that it is systemic (cc) and offered to coordinate with chief of Oncology for any novel chemo treatments. Please use this infor as you wish. JeffDecember 31, 2006 at 10:20 pm #14827
My husband was taken to OSU via ambulance in June after he passed out at the fairgrounds during a Farm Bureau meeting we were attending. We are not from Columbus and rarely ever went there but I feel it was a guardian angel or God himself that made my husband so sick at that time. We would have left one hour later and I don’t think he would have been here now if he hadn’t received care at OSU. He was so sick that they thought he was poisoned at first but within 2 days they had him diagnosed with CC. Our local hospital would not have known what was wrong and may have not placed stents and got things moving quickly enough. Even Dr. Bloomston and Martin were impressed at how quickly they diagnosed him. At first the medical Drs. were simply going to refer him to medical oncology and they never even talked about surgery, then my daughter in law became involved and got Dr. Martin to see my husband. He was still in the hospital in the Doan at the time and we were feeling very depressed and scared. My husband was very despondent and kept saying that he just wished someone could give him some hope and the next day Dr. Martin breezed in, told us that he had lots of tricks that they could do, that he had a patient that had received radiation treatments that he had seen that same morning and she was doing fine after four years. He proceeded to move him out of the zoo on Doan and into a beautiful private room in the James. We felt as though we had fallen through some rabbit hole like Alice and we were just being lead along some unknown path. I will forever be grateful to Dr. Martin for what he did for us. The difference in our outlook was like night and day. Of course after Dr. Bllomston was unable to do the resection we were on the downward cycle again but they did everything they could to continue to give us hope. Dr. Mayr was my husband’s radiation oncologist. She is very good. I don’t know what to tell you about the surgery. Dr. Bloomston did not say that it was possible that my husband wouldn’t make it out of surgery but he did say it would be very difficult. My husband is 59 and I know the Drs. want to give him as much time as possible but they tend to lean toward quality of life at his age maybe more than quantity. At your husbands age I know they want to give him as much time as possible and may be more willing to be more aggressive. I know they will do surgery if my husband wants to go through it all again but at this time I don’t know if he does. You can send your husbands scans to Pittsburgh and the Cleveland Clinic. They will look at them and tell you over the phone what they think without going there personally. At least you would have some thing to go on besides what the Drs. in Columbus say.I felt that they wrote my husband off in Cleveland, they weren’t interested in doing much but Pittsburgh did show some interest in his case. We just decided to go ahead with the brachytherapy and wait and see. I am going to contact them again though after his next MRI. I have read about Northwestern in Chicago too. They seem to do a lot of transplants and that wouldn’t be to far.Other than that I think Mayo may be your best hope. They are doing transplants for CC patients and with your husband being so young he may be a candidate You should check that out. They are actually having as much success with their transplant patients as resection patients as far as 5 year survival rates. Please let me know if I can help with anything. I know it is terribly confusing and scary. Take care. MaryDecember 31, 2006 at 9:08 pm #14826
Thank you to all that have replied to my post. It is a sense of strength to hear all those kind words from people like you, people I have never met before.
We need to decided if we should stick with the James here in Columbus or try MD Anderson or Kettering. We did contact MD Anderson and they said they really don’t do “second opinions” – they said if we would go there, they would go ahead like we decided on them already. I don’t know what to do about that.
We have seen Dr. Martin and Dr. Bloomston here at the James. We really liked them both. Mary, I know you have Dr. Bloomston too. He is the one that told us 9 out of 10 surgeons wouldn’t operate on my husband but him and Dr. Martin, along with Dr. Walker (radiation Doc) would. Dr. Bloomston said there is the chance he might not make it out of surgery. The tumor is big and it’s in a really bad area. We don’t have a choice though. We have to go ahead with the surgery. He said if we didn’t (which we never even considered) he would have 1-3 years. When you are 41 years old with a 12 yr. old and 14 yr. old, it’s a no brainer.
Mary, have you met with Dr. Martin?
Joni, how is your husband now and what treatments has he gone though?
Thank you all again. It’s nice to know I have you guys “out there somewhere!”
KrisDecember 31, 2006 at 7:57 pm #14825
Kris: Just wanted to say that I wish you all the best in the coming of the New Year! Sounds like your Doctor has a plan and is willing to put action to his words. I would also like to add that some diet change is helpful. I’ve tried a lot of different things but the most I’ve found beneficial to me is vitamin Enriched bran flakes with blueberries (fresh or frozen) and or bananas every morning along with 24 ounces (2 tall glasses) of 100% grape juice . I use the Sam’s Choice from WalMart with purple concord grapes. no additives, no red or blue dye, no added sugar. Yes it is pasturized but I feel the nutrients and antioxidants are still suffient. I other wise eat fairly normal just learned to stop pigging -out so much. I feel it is important to keep your system active and moving at all times; at least one good bowel movement a day. I would also recommend clonazepam 1mg before bedtime every night and as needed during the day. It is an anti-anxiety medication the lets your mind and nervous system get the rest and sleep you need. I believe this has helped me because when your brain is over active it causes adrenaline system to kick in and starts to throw your whole body chemistry out of wack. Well, I’m not a doctor just passing along what has worked for me. We all know that each of use will respond in different ways but trying to keep a cool relaxed karma is so important i think. I listen to relaxtion/healing moods CDs almost daily when taking a nap or when going to bed. I know my family thinks I’m bonkers but hey, if I feel it helps me give a whirl I say. Best Wish to you and your Family for a Happy and Hopefilled New Year! I’m sure everyone on this web site has sent you all a prayer of support your way. I know I have! Take care, JeffDecember 31, 2006 at 6:47 pm #14824
My husband is being treated at the James for CC (klatskin tumor). He has been treated since June 23. They tried surgery in July but the tumor was too far into his right duct so they were unable to perform the resection at that time. He has since undergone radiation with chemo and hi dose brachytherapy. Thay could not see the tumor at all on the cat scan follow-up of his brachytherapy 2 weeks ago. It was very visible on the cat scan in June. Thay are going to do an MRI and bloodwork in a week and then we have to make the same decision as you. His surgeon Dr. Bloomston , whom we really like, is a bit leary of trying the surgery again as he feels it would be very hard since they already attempted it once (scar tissue etc.). He also stated that his colleagues would not necessarily agree with a second attempt but he is willing to try if the scans show that there is a very good chance of success this time. Dr. Saab , our medical oncologist feels that Dr. Bloomston is very “reasonable”. He basically said that there are surgeons that he would question as to whether surgery should really be performed and that he would not support, but he trusts Dr. Bloomston’s judgement. We have been very happy with the treatment my husband has received at the James. I personally feel that their treatment is “cutting edge” and question why other places treat with chemo alone. I have not gotten much feedback from people on this site since most are simply treated with chemo and seem negative about the radiation treatments. All I know is that my husband is doing very well right now and all of his Drs. at the James are very excited about his progress. The only other place locally that I would consider taking him to is the Univ. of Pittsburgh Medical Center. I am going to send his next MRI to them for a second opinion about surgery or whether they agree with putting in metal stents if surgery is not an option. They have a very highly rated Liver Cancer Center and perform a lot more liver transplants than in Columbus.
I am very sorry to read about you and your husband having to go through this traumatic and devastating experience. I guess my best advice is to not believe the statistics and all the negative things you read. It’s hard to feel optimistic when you are faced with such huge decisions. My husband was operated on the first time before I had time to really do nuch research. We were simply in a whirlwind of testing , procedures and then surgery. Now that I have done so much research I am more afraid of the surgery. I honestly didn’t realize it was so radical the first time. Our decision is much more diificult now. You should go where you feel the most comfortable and confident. I wish your husband the best and if I can be of any help please let me know. Best wishes. MaryDecember 31, 2006 at 4:58 pm #14823joniMember
Kris – My husband Mike was diagnosed with cc in January 2006. We have a 13 year old daughter. Live every day as if it is your last, love each other, and make memories. We’ll hope and pray that your husband’s treatments are effective and that he will live to see your children grow up. I, too worry about the same things as you. I lost my own father when I was 8 years old and even though it is terribly difficult we do continue to live and eventually thrive. You are in my prayers. For all of those afflicted with cholangiocarcinoma, my prayer for 2007 is that a cure will be found. Happy New Year and May God Bless!December 31, 2006 at 4:38 pm #14822saraMember
Kris – Two of the other big name cancer centers (besides Mayo) are MD Anderson in Houston, Texas, and Sloane Kettering in New York. These places often quarterback your treatment at your home hospital, or just offer second/third/fourth opinions.December 31, 2006 at 4:34 pm #14821
Jeff, thank you so much for your email. I am looking for all the help, support and info I can get. I think it’s amazing that in March it will be 8 years for you!! From everything I have been reading about this horrible cancer, that is quite amazing. That puts a smile on my face and hope in my heart.
My husband’s tumor is 5.8 cm X 5.5 cm so it’s big. Our Doctor here at the James at Ohio State said 9 out of 10 surgeons wouldn’t operate on him because of the size. He said he would though. We don’t know if it has spread from somewhere else yet. He is going for a colonoscopy and endoscopy next week. They will also check his lungs. Now we are just praying that it started in the duct and not somewhere else. They said he would have chemo and radiation after.
I have a 12 year old daughter and a 14 year old son. I don’t want them to have to grow up without their Dad. He is an awesome Dad and is very close to his kids. I don’t know how we would get through that. I am trying to think positively and I am making sure he is but it’s hard when you know what you know about this type of cancer.
Thank you again for your post. Take care.
KrisDecember 31, 2006 at 4:47 am #14820
Hi Kris: Sorry to hear about your Husband. I had my surgery at the Mayo Clinic in Rochester, MN. Dr. David Nagorney is the professor of surgey (gastrointestinal). He performed resection of my left lobe of liver and removed my galbladder. The chief of Oncology I don’t know his name but you can type in your search mayo clinic cancer and it will take you to site for information. All the other cancer centers just monitored me by way of CT’s. I can tell you that they all coordinate with Mayo’s Chief of oncology as for as any novel treatments. I didn’t start trying any treatments until about 2 years ago thruogh a VA hospital here in Kansas. I had surgery back in March 1999. Had reocurrence to the liver and both lungs. So I just followed it and kept on working until like I said about 2 years ago. It was a personal decsion I struggled with after doing some research. If the chemo treatments are going to work they’ll work later as well as sooner. Although others feel sooner is better. It depends on wheter the cc is low grade slow growing or high grade fast growing. I didn’t do any treatments until size got to be 5.8x 6.1 CM and the few nodules on my lungs went over 1.2 CMs. It was a quality vs quanity for myself. I will be starting a new regimen the 8th of January , maybe all depends on the CT scan I have done on the 4th. My personal experience is once chemo treatments are started your immune system becomes extremely vunerable. I’ll stop rambling and say their are several great surgeons, the thing is how much has it spread to other areas and if surgery is an option vs starting chemo. Again, sorry to hear the bad news about your Husband I was diagnosed at age 43. March 2007 will be 8 years living and fighting this CC. I hope to surpass that date only time will tell. Positive thinking is a powerful tool that only last for so long though. My prayers and thoughts go out to you and your husband. If I can answer any question that may be on your mind feel free to do so. I’v kinda seen,and read most all about cc and know there are quacks out there as well with so called miracle cures. God is the only miracle worker in my eyes. Be prepared and advocate strongly. Jeff
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