marylloyd
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Kris,
I’m so sorry to hear your news. I really was hoping they could operate at MD.I believe OSU is one of the few places that perform IMRT on this type of cancer. We went to Pitts. and they do not. Most of the people on this site get chemo only as far as I can tell. My husband took Xeloda with his IMRT.As I have said he had very good results. We met with Dr. Bloomston and Saab yesterday and they don’t even want to do chemo at this point. They will do an MRI in 6 weeks and keep an eye on things.He is at the James right now having his stents changed. I am picking him up tomorrow.
My husband tolerated the treatments fairly well. He did have some gastritis caused by some damage from the radiation which healed and went away after about 6 weeks.HE had brachytherapy after his IMRT treatments. I don’t know if that is an option for you if surgery still is not possible after his treatments are finished. Our radiation oncologist was Dr. Mayr. She did a great job. Tom has been told by every Dr. we meet with that he is going to die from this cancer, eventually. I don’t know how he keeps it together but he has a great attitude and that helps him a lot. He says he just doesn’t think about it- he leaves that up to me!! Just like you I spend my time reading and trying to keep on top of things and that is very important. Every patient needs an advocate to speak up for them and make sure everything is being done that can be- that is our role. Just try to stay strong and positive and I guess pray a lot. I don’t know what else to say, but if you need anyone to talk to you can e-mail me directly and I’ll give you my phone #. At least we have been through the same experiences you will be going through at OSU. Best wishes and you’re right- it does suck!! Take care. MaryHi Michelle,
Please do keep us informed of your Dad’s progress. It is very informative to hear from people with so many different scenarios, It’s also very confusing at times because you really don’t know which path to take. They have opted to not give my husband any chemo right now. They’re going to do another MRI in 6 weeks and see how that looks. We’ll just continue wioth diet and exercise etc. and hope for the best. Good luck with all of your Dad’s tests. I hope they all come back with positive results!! MaryHi Rhonda,
Yes fevers do seem to be a common thing to deal with. My husband is doing very well right now, no chemo or anything and he started chilling yesterday and had a fever of 101.5 for a few hours. That’s why I don’t really believe his tumor is gone even though they can’t see it. He has had fevers over 103 and that is when they usually tell me to take him to the hospital.Now if it is under 102 I give him Motrin and wait and see. It seems like it goes down by the next morning and he is fine. Does Bob have stents in? I always worry about infection. If his temperature doesn’t go down then I assume that is what is wrong. You are right about the rollercoaster ride. We are kind of on the up cycle now but I worry about getting knocked down again! Take care. MaryWhy do some people get hit so hard with tragedy? I am so sorry for all you are and have gone through. It really isn’t fair and it is no wonder your husband is feeling the way he does. He is probably worrying about you too!! No matter what our circumstances are one thing I have learned since we started on this journey through cancer is that there are always people that have a worse situation than us. It is heart wrenching to see what people go through! I just hope and pray that you can find something that works for Bob both physically and mentally. The Drs. have often offered anti-depressants to my husband but as of yet he has not needed them. He is very special because he says he simply doesn’t “think ” about it. I personally have felt the need for them at times because I do think about it and read about it and it is impossible to not get depressed. Just be sure to take care of yourself too. You have your own battle to fight and you need to do what you have to for your own health!! Please let us know if we can be of any more help to you. At least you have a support group here that knows what you are going through. God bless. Mary
My husand was diagnosed in June but there was a visible mass at that time and he had stents placed, unsuccessful attempt at resection etc. Since then he has had a lot of radiation and some chemo and now they can’t see anything. It seems so strange because they can’t say that it is gone but no one seems to know what to think. I am like you and just feel that we are in a calm before the next storm hits.I hope it stays away for ever but I doubt that it will. I guess we have to be thankful our loved ones are doing so well and hope that it can continue for a long time! Best wishes for continued good results! Mary
Kris,
Just to add to my last reply, you are definitely doing the right thing going to MD to get another opinion and hopefully the opportunity for successful surgery. I just want to say that if surgery is not possible don’t discount the treatment OSU can offer. At Pittsburgh they told us they felt my husband had received excellent care and were quite impressed with the results. The ability to be home and to be able to take better care of yourself with diet , rest and exercise has to be considered!You will also have the support of your friends and family. All I know is that everytime we go away for even a day my husband eats badly, he doesn’t get enough water, he’s tired etc and we are always glad to get home! Take care and good luck!! MaryPeter,
Yes, my husband did have a Ca 19 -9 and CEA. His CEA was normal. His Ca-19 was 238 , down from well over 500 when he was diagnosed. This worried me that it was still in the 200’s but at the Liver Center in Pitts. , where they treat cancer and all kinds of liver problems they said that patients with cholangitis have scores in the 200’s or more. My husband received a lot of radiation so I am sure it is going to take some time yet for the healing process to be finished. He probably basically does have cholangitis or at least the same type inflammation even thogh he is feeling good and his bilirubin is normal. I do think he is going to undergo some chemo just as a precaution. I can’t really believe that the cancer is “gone”. We have to assume it is still “lurking” even though they can’t see it and not let up for a moment. This is a never ending struggle. Best Wishes. MaryGood luck Kris. I hope they can help at MD Anderson. Pittsburgh does have some different techniques of treatment. It is hard to know which is the best. Obviously surgery is the first choice and I hope they can do it at MD. Keep in touch. We are all hoping you get positive results from your trip !! Take care and best wishes! Mary
Michelle,
His liver enzymes have been all over the place to tell you the truth. I just got all of his blood test results since his diagnosis and you can chart every thing that was going on by what they read. He had an abcess that caused them to elevate and then he had radiation and chemo (Xeloda) the entire month of Sept. They were elevated, ecspecially his alkline phosphatase, the entire month. Then they went down during his month off between treatments. He then had brachytherapy in Nov and they went up again and have stayed high since. No one seems too concerned in fact the nurse in Pitts. seemed to think it was normal considering the amount of radiation he has had. It will take awhile for the tissue to heal and the alkaline phosphatase is sometimes elevated because of tissue granulation, which is the healing process. We’re just continuing with everything we’ve been doing and not changing anything because it seems to be working! Where do you get the reverse osmosis water? We live in a rural area so I don’t know if any of our health food stores will have it. I’ll check.
As far as the radiation he received, it really is cutting edge. OSU is one of the top centers for brachytherapy although they have never done too much with this type of cancer. I would say it is a very good option!! They may want to give him some chemo(gemzar) yet just to make sure. We don’t really know how we feel about that yet. I guess as long as he can eat well and maintain his quality of life we may go ahead. His immune system is obviously working very well because everyone around him has been sick and he is the ONLY one in the family to not have gotten a cold yet. It’s pretty amazing! Take care! MaryHi Michelle,
It’s been an amazing day for us too. My husband was diagnosed in June and underwent an unsuccessful resection. Of course we did about the same as you regarding diet although not quite as strict! The carrot juice , foods with only one ingredient in their label , water, water, water and no sweets, absolutely no high fructose corn syrup(it’s amazing how many foods have it in them), whole grains , the works. He has also been taking maitake D-Fraction capsules, drinking green tea, although I’m going to switch to the pau d’arco and lately fish oil capsules, (he was taking cod liver oil), and flax oil. I read about a study that showed omega 3 fatty acids actually caused the apoptosis of cc cells. Any way he also under went 5 grueling weeks of IMRT radiation and Xeloda and then brachytherapy. He had a cat scan follow-up on Dec. 18 and they could not see the tumor. He had a MRI on Jan. 8 and things still were not clear(radiation causes tissue distortion). We wanted a second opinion so we went to the Univ. of Pittsburgh Medical Center on Monday- they took another cat scan because they felt they could get better results. Their tumor board met yesterday, which included transplant surgeons, radiation oncologists, etc and they could not see anything. They say they feel the tumor is gone!!! We have been hoping this was true now for weeks but this second opinion really is the clincher!! I really believe he is in remission! I have not understood why so many people are treated with chemo alone to begin with. It completely destroys your immune system. Even though he had some problems during his radiation it was mainly caused by the after math of his surgery(infection and an abcess). Once he was over all those problems he was able to handle the radiation and his chemo was very limited. He had lost 70 lbs and has gained 20 back, he is at a very healthy weight and is working out 30 minutes every day. His enzymes are still high but they will come down as the healing continues. All of his other bloodwork is excellent. Miracles do happen and I just pray that your father’s results will continue to be positive along with my hubands!!I can only hope that more people are able to find something that can work for them as well as what we have found for our loved ones. There have been so many tears the past few months, not only for my husband and our family but for all of the people on this site and others I know that are fighting this battle and some that have lost their fight. Congratulations on your success. I would still have an MRI done just to make sure. They thought they could see something on my husbands but I guess they really didn’t. It is very confusing sometimes! Take care and best wishes. MaryMichelle,
That is wonderful news. Do be sure to have the MRI though because my husband also has a klatskin that after treatment could not be seen on a cat scan. It could still be seen on the MRI though. Please do elaborate on the diet your Dad is following. We have been following a strict diet too, but my husband’s liver enzymes are rather high. I think it is from all the radiation he had. If your Dad’s tumor went away with nothing but diet that is truly remarkable. Please keep us all informed of his future results and any suggestiond about diet. You are so right though about being more aware of all the cancer sufferers around us. Since my husband’s diagnosis it seems we are constantly finding out about new cases every day. Take care and best wishes for continued success!! MaryHi Bob’s wife,
I’m sorry to hear about your ordeals.My husband was admitted through the emergency room with severe sickness and was also told his diagnosis when he was alone. Luckily my daughter and I arrived an hour or two after he was told but it was devastating to us. We just hugged and cried and then he even thought that I might have it too because they told him it could have been caused by spraying chemicals in our greenhouse/ farming business. My daughter just about lost it thinking she was going to lose both of us. Things got better though after we spoke to Drs. that really knew more and were more optimistic. As far as nausea, my husband experienced a lot when he went through his radiation/chemo treatments. They would give him Zofran either in pills or IV. That really seemed to help. Also compazine or phenergan. I would make rice pudding, oatmeal. or anything that was easily digested just to get calories in him. Gingerale helped because he had a lot of gas from gastritis and Pepcid AC also helped. It sounds like your husband really needs some anti-nausea meds though if he is too sick to even drink. I hope you find something that helps soon. I was more worried about my husbands health during that time then ever because I realize how important nutrition is in fighting this disease . I felt helpless just as you probably are. I hope you are able to find a way to help your husband feel better. My thoughts are with you. God bless. MaryHi Kris,
They have a liver cancer hospital and one of their Drs. has performed over 500 transplants(Dr. Marsh). He has worked at the Mayo Clinic and various other places They also do laparoscopic resections which is what I was hoping they could do for my husband-just check him out by doing a laproscopic procedure before opening him up completely only to discover that they couldn’t finish. My husband has had a lot of radiation and I’m afraid they will be concerned about scar tissue. Actually at Columbus Dr. Bloomston was leary of doing surgery on my husband because he already has had all the radiation he can endure and he was concerned that he wouldn’t be able to obtain clear margins and then would not be able to follow through with radiation after surgery.I don’t know. I just decided it was time for a second opinion before we started with chemo and Pittsburgh’s cancer program is one of the top in the nation. I also felt that they seem to have more options for treatment (I’ll let you know after Mon. if this is true) and maybe just more experience in general since liver cancer does seem to be one of their specialties. We may end up back in Columbus but Pittsburgh is actually closer to us. I would check out every option for surgery before starting chemo and radiation. Is your husband’s tumor in his ducts or in his liver? Did he have to have stents placed? My husband’s tumor is in the bifurcation of his ducts- just a mm. too far into the right duct to resect. Now they don’t seem to know whether what they are seeing is tumor or scar tissue. It’s all very frustrating! I will let you know what we think of Pittsburgh after our appt. Keep checking things out! There are always options- you just have to figure out the best one and pray that it works! Take care. MaryJeff,
I believe you are right about the odor. I actually noticed an odor from my husband during his radiation treatment and perhaps it was from the cell apoptosis. I don’t notice it now- it has been over two months since his brachytherapy but his Alkaline Phosphatase levels jumped sky high after his treatments started and are still high. His other liver enzymes remain high as well.I assume this is all part of the cells dying and now things healing.They say elevated levels can be caused by tissue granulation. Any way, I know at OSU they were doing a lot of radiation on lung cancer patients but I don’t know what type of radiation. We are still waiting to hear what is next. It’s been over two months since my husband has received any treatments and they don’t seem too hot on the idea of surgery at OSU. We are going to the UPMC Liver Cancer Center on Monday. Did you go back on chemo right after your radiation treatment? I worry about him not being on chemo yet but then I think things need to heal before they start zapping him again. Did your liver enzymes jump during or after radiation?David,
What are your Drs. saying about the klatskin tumor in the ducts? That is where my husband’s tumor is and as you said we feel there has been shrinkage because his stents are inserting easier. Are they going to try and remove the tumor in her ducts when they do the resection? I’m curious because I think most people here have the whipple surgery so that means their tumor is lower in the common bile duct. I have not heard about many having a klatskin tumor removed. Thanks and good luck. Mary
