marylloyd
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Jeff,
When you say oxyplatin injections do you mean directly into the tumor or bloodstream. Sorry if this is a dumb question but we have not had much experience with chemo yet. I’m glad things are going well so far- I hope your tests come back alright. We are to the point of getting some second opinions. My husband has had a lot of radiation and a little chemo-Xeloda, now they don’t really seem to know what to do next. The tumor is still visible on MRI, it has shrunk but it seems like they are having a very hard time knowing what the next step is. He doesn’t want to try surgery again, is actually talking about transplant at the Univ. of Neb. We’re going to go to the Univ. of Pittsburgh ASAP and see what they say.They actually do laparoscopic liver resection and I’m hoping they could go in and visualize the tumor before opening him up and putting him through that ordeal again if the resection is not possible. This is almost harder than when he was first diagnosed. Your input and the input of others really helps. We can compare what our docs advise with what others around the world are having done. Thank-you and good luck!Hello Mallie,
My husband has experienced chills and fevers quite often too. At least two times he has had to be hospitalzed due to infection. He also had some infection problems when his stent was changed in October. Since then he has had about three or four episodes where he gets chilled and shivers for a couple hours with a fever of around 101. I usually give him Ibuprofen and we wait it out and by the next morning he’s fine. I am like you and immediately think his stents are infected but since the fever and chills subside after awhile I figure it is just something in his system that is out of whack. I have read about others going through this same thing so I guess it may not be too unusual but it drives me crazy. I get so worried! He has had more problems with infection than the cancer and he is allergic to Cipro and Flagyl which are two of the top antibiotica used now. He seems to have these attacks if he tries to do too much and gets tired out. Best wishes. MaryHello Celia,
I’m so sorry to hear about your husband. It breaks my heart to hear about others going through this ecspecially at such a young age with young children. All I can say as far as advice is that you need to get a second opinion. Is there any way you could go to MD Anderson in Houston? They are supposed to be one of the best places in the country for liver surgery and treating cancer. My husband was diagnosed in June at age 58 and was told by the medical team that diagnosed him to basically go home and plan his funeral. Several days after being told that we met with surgeons( which we had to arrange on our own) and they gave us an entirely different outlook. They were unable to do the resection but treated him aggressively with chemo and radiation and 6 months later he is doing very well and his tumor can’t be seen on a cat scan. We don’t know if it’s the Drs., the carrot juice or prayer but things do work to treat this disease and you must try anything you can to fight it. The Drs. really don’t know that much about this cancer it is so rare, so when they give you statistics they are very limited and several years old. I believe they are learning new techniques all the time as far as treating CC so you must go somewhere where they have the ability and knowledge to give your husband the best possible chance for success! Best wishes Celia. Don’t lose faith- there are a lot of people here that have fought this disease for years and are still hanging in there. A cure may be just around the corner. MaryKris,
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. MaryKris,
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. MaryKris,
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. MaryI’m sorry Jeff. I knew you had undergone radiation treatments and I hoped it had worked. It may work better early on, who knows. They have another patient at OSU that had basically the same treatment as my husband and she is doing well after 4 years. Our problem now is whether to take the chance of surgery again, knowing the tumor has shrunk significantly or to do chemo as a follow-up now and diet etc. and hope for the best. His surgeon is willing to try the surgery again if the next scans and bloodwork convince him that it would be successful. Of course they won’t know for sure until they get in there and they hate to put him through the trauma again. He has had several infections but I think he would be able to handle it alright. He has gained weight and is feeling good right now too. Tough choices. I hope you have success with your diet. I give my husband Maitake D Fraction pills, dried beet juice pills,cod liver oil capsules and fresh carrot juice daily. Who knows maybe the magic mushroom pills and carrot juice are the cause of his success so far. It sure hasn’t hurt. Take care. Mary
Thank-you Joyce,
He is actually being treated for cholangiocarcinoma regardless of the results of the biopsies. I just always have hope in the back of my mind that it may be benign . He is being treated at OSU Medical Center and they present his case to their tumor board as well. In fact they will be doing it again after his next scan on the 18th. They attempted surgery in July but his tumor was just a little bit too far into the right bile duct. They were going to remove the left duct and 1/2 of his liver. Since his chemo and radiation treatments the tumor has shrunk enough in the left duct that they were able to easily place a catheter in it for brachytherapy several weeks ago. Last summer it was completely obstructed. They feel very confident that the tumor has shrunk enough in the right duct that they can successfully perform the surgery now. The problem is that they really won’t know for sure until they operate again. I just hate that he would go through all that for nothing again. He is doing very well right now and feels the best he has for months.
MaryHello Jerry,
I’m glad you found this site and are still here to tell us about your experiences. It sounds like you have been through a lot . I hope you are able to start another project and spend the next five years working on it. You have a wonderful attitude and I think that is half the battle. Stay strong and positive. My prayers are with you. My husband is presently being treated at OSU Medical Center in Columbus. Could you tell me the name of the oncologist you had that went there? It may be the same one treating him although he has mainly been under the care of Surgical and Radiation Oncology. He has received very little chemo yet. They are hoping to make another attempt at resection. Thank-you for the info and take care. All of you suffering ftom this disease are so brave and strong, it is very inspiring. MaryHello Seasheller,
My husband has been receiving treatment at the James Cancer Hospital, part of the OSU Medical Center in Columbus since June. They tried surgery but were unable to do the resection because the tumor was slightly too big. He has undergone 5 weeks of radiation therapy along with chemo and had brachytherapy 1 1/2 weeks ago. They are hoping they can do the surgery successfully by the first of the year if the brachytherapy has good results. I have been very happy with the care he has received there. Where I live, south of Cleveland ,everyone recommends going east to Pittsburgh or west to Columbus.I do think we will go over to Pittsburgh(UPMC) for a second opinion before he has the surgery again at Columbus. They seem to have one of the best programs in our area. You may want to check with them. My husband feels pretty good between treatments but has had several infections that have drained him. The treatments themselves have had few side effects.Good Luck!
