http://www.cholangiocarcinoma.org/punbb cholangiocarcinoma.org :: discussion boards en http://backend.userland.com/rss http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=32943#p32943 32943@http://www.cholangiocarcinoma.org/punbb This is what i was looking for. Thank you Guyz Regards Prior11 Fri, 30 Jul 2010 22:30:00 -0700 http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=32942#p32942 32942@http://www.cholangiocarcinoma.org/punbb Sounds great Rick. I wish I could get that treatment but my tumors are all out of my liver, but attached to it so I dont have as many treatment options. Hope you feel well for your trip back home. Kris Fri, 30 Jul 2010 21:42:03 -0700 http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=32941#p32941 32941@http://www.cholangiocarcinoma.org/punbb Welcome and sorry to hear about your brother. It is amazing who steps up to the plate in times of need. By all means give your brother the website info. This can be a lonely disease for a patient and it is nice to hear from others who have the same disease. As a patient, I value all the support and advice I get here. It is my second family. I hope the radiation and chemo get the cancer under control. Please keep us informed how your treatment goes. Kris Fri, 30 Jul 2010 21:38:40 -0700 http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=32940#p32940 32940@http://www.cholangiocarcinoma.org/punbb To all:  On July 27, I went in to the Siteman Cancer Center at Barnes/Jewish hospital of St. Louis, MO for an arteriogram/mapping session to inspect the routing for my planned radioembolization on August 11.  The mapping session was ended early when the docs found that the tumor-blocked blood supply to the left lobe of the liver had caused the arteries/veins to atrophy beyond the point where they would allow safe passage and planting of the microspheres for successful intervention.  The doc in charge said there were still treatment options which, although less ideal than radioembolization, would offer hope for shrinking/killing the tumor. Today, July 30, 2010, I received a call from the chief Interventional Radiologist, who discussed Siteman's next proposed course of treatment.  He proposes to use their stereotactic equipment for stereotactic radiotherapy/radiosurgery.  This involves 5 sessions (over two weeks) of external radiation aimed at the tumor from a variety of different angles so that the radiation received by the tumor will be much greater than that received by surrounding tissues encountered by the radiation beams en route to the tumor.  Few side effects are to be expected, possibly including some heartburn and mild queasiness/nausea--and I should be able to drive myself to and from the sessions myself. They have a triplex (?) unit that includes three different treatment devices, according to the Siteman website--I think they'll be using the basic stereotactic part on me.  The good news is that over a period of a few months after the radiation, it should become apparent to what extent the treatment is successful.  The disadvantage of this procedure over the originally-planned radioembolization/microspheres is that the stereotactic procedure only gets the cancer that is visible on the imaging devices, whereas the radioembolization/microspheres would have penetrated more deeply into the liver to get at cancer that might not show up on the images.  The other disadvantage (?) is that the stereotactic radiation is considered only as a replacement for surgery in my case.  According to the Interventional Radiologist, the aftereffects of the radiation include scarring of tissues which will render surgery impossible. Overall, it seems that the sterotactic radiation therapy edges more toward the palliative than the curative treatment that I'd hung my hopes on, but if succesful, it should buy me more time and perhaps, after follow-up chemotherapy, a return to work. Well. there's my "show and tell" for the week, and what a week it has been.  Severe disappointment on Tuesday turned to less-than-ectasy for Friday evening, but with a sincere "Thank God" for a treatment option with continued hope.  A good weekend to any and all interested parties. Fri, 30 Jul 2010 21:12:18 -0700 http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=32939#p32939 32939@http://www.cholangiocarcinoma.org/punbb Today was treatment day.  It seemed to go pretty well.  It took about an hour in total from the time I entered the treatment room until it was over.  A few more things that I found out today:  1.  I got a BIG dose since my study of shunting was so favorable so I got a total of 116 Gray.  2.  Since I got such a big dose, I really should not have another for at least 3-4 months if it is necessary.  The healthy liver tissue needs that much time to heal.  3.  As a part of the protocol you get pre-emptive scripts of a steroids pack, prevacid, and anti-biotics to help prevent ulceration, acid problems, a reaction to the radiation, and to help keep up energy.  4.  That physicians who have access to recent raw data are very optimistic about this treatment and indicate that studies on this data will reveal good things about this treatment. I was especially happy to hear about the big dose and that it would be about 4 months before I would be evaluated to see if I need a 2nd dose.  The break from all of this travel out to Mayo Clinic will be VERY nice.  Not that I don't think it's the best place to be for medical care - we just need a break from here.  Also, due to my particular situation and minimal shunting I could have 5 total doses of this before I reach my max on the liver.  That is almost unheard of and most people have 1 or 2 total treatments, occasionally 3.  I'll push the limits and do as many as I need to as long as progress is made. I was released and told to stay in town overnight just to keep an eye on the puncture site.  It would be good to be close by if it decided to start bleeding out.  So tomorrow morning we start the long trip back home and will work with Mayo over the phone if needed over the next several months and otherwise rely on my local Docs (I'm not super impressed with my local docs, if I haven't mentioned that before).  I can't wait to get back into my own bed again though. So far I haven't had anything substantial for side effects for the treatments, but it is still early.  The only thing noteworth is that soon after the spheres were fed in through the catheter I did experience a little bit of sharp pain.  This was promptly taken care of with another dose of fentynal.  I'm still waiting to see what the fatigue is like because I've heard that is a crushing side effect.  Hopefully that one just skips me completely. So - as I promised - I will keep updating this thread until I feel that I've offered up all of the information I think could possibly be useful to someone else.  Pardon me if it gets a little bit wordy or if much of what I say doesn't apply, my intention is just to help others considering this route of therapy in the future. Thank you all for your outpouring of support as well.  Several of you have visited my Caringbridge Website and left some encouraging comments for me.  It is much appreciated. Rick Fri, 30 Jul 2010 19:00:31 -0700 http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=32938#p32938 32938@http://www.cholangiocarcinoma.org/punbb Oh Pauline, That is so lovely and a wonderful tribute to Anthony and to your life together and forever. Love & Hugs, Darla Fri, 30 Jul 2010 16:51:42 -0700 http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=32937#p32937 32937@http://www.cholangiocarcinoma.org/punbb I do not want to indicate any negative vibes, and I plan on sending this website to my brother, Ned, who has been diagnosed but has the most incredible positive attitude.  MY husband, Tom ( a stroke victim ,calls Ned ( my brother) courageous, and I must agree.  It is not about me, it is about Ned.  He lives in our homestead at age 57 with our mom who is 94.  I am scared because with Ned ill, who will be able to allow mom to stay in her home?  She is fairly healthy but can't see for crap and her bones are crumbling so of course can not care for my brother.  I live very very far away (1400 + miles).  Ned is receiving support from the most unusual people.  His X-wife is carting him to the cancer center to receive radiation treatments and emails me to keep me informed about all aspects of his treatment.  Will anybody guide me?  Should I suggest this website to Ned? All suggestions and advice are welcomed. Fri, 30 Jul 2010 16:41:49 -0700 http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=32936#p32936 32936@http://www.cholangiocarcinoma.org/punbb Bob, My wish is the same. It seems that we go through so much and never know if some things even helped.  I hav been blessed but I like everone else are looking for the magicwords of remission or cure. How long have you been going through this journey? I had my 1 year anniversary July 29.  Things are going as well as anyone could expect. I believe the Lord has been with me throughout.  The prayers and support realy help keep me positive. Best of luck to you. Charley Fri, 30 Jul 2010 14:20:32 -0700 http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=32935#p32935 32935@http://www.cholangiocarcinoma.org/punbb Hi Bob,   Your posts are very interesting to me as my husband just went into "rigors" and chills yesterday morning after getting nauseated and vomiting. He can be just fine one day and the next day be shaking and chilling etc., weak and too sick to get off the couch. He usually doesn't have a fever when the rigors start but after he settles down so I can take it, he usually has spiked a pretty high one.(yesterday it was 102.7). I always thought the rigors were from infection. I never heard this latest explanation. I do try to get some Motrin in him and that does seem to help stop the shaking. He's still feverish today and weak so the Drs. put him on antibiotics. Hopefully no hospital stay this time. Bob, do certain foods bother you? My husband gets these "attacks" everytime he eats too much dairy or fried foods It was way too much ice cream this time. I think they just clog him up which causes cholangitis. Keep us informed as you continue your treatments. You are a rare long term survivor and we wish you the best. Mary Fri, 30 Jul 2010 13:49:54 -0700 http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=32934#p32934 32934@http://www.cholangiocarcinoma.org/punbb Hi All, my dad's scan showed the stent is in place.  Whether or not it is doing its job is another question.  They are going to decide tomorrow on an external bile bag to drain bile.  My dad's billiruben level is still high at about 9.  He is also going to receive IV fluids next week at home on Mon. Wed. and Fri. through home health.  The doctors really want my dad to consider hospice.  My dad wants to see the onocologist for a consult first.  (He was suppose to start chemo but never got there.)  My dad has had such a busy difficult summer.  He told the nurse this morning that he'd pay for Red Lobster if she would get him out of there.  His confusion is a little better, but the doctor told him this morning that he shouldn't drive anymore.  He is quite a character. Fri, 30 Jul 2010 13:49:08 -0700 http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=32933#p32933 32933@http://www.cholangiocarcinoma.org/punbb Dear Pauline                     SO BEAUTIFUL thank you for sharing love and light alans mom Fri, 30 Jul 2010 12:39:08 -0700 http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=32932#p32932 32932@http://www.cholangiocarcinoma.org/punbb Hi Marion, Hope I didn't come off as a whiner or complainer. I didn't mean to - just expressing some recent frustration and wishful thinking. When I was first diagnosed I followed the course set by the various docs without question and had exceptional success. Thank you doctors and thank you God! Recently I've had a series of bouts with sepsis due to blockage of a duct. A plastic stent was placed which was replaced every 6-8 weeks which usually caused 'infection' which was treated with a hospital stay, IV anti-biotics and then followed with 10-14 days of oral ant-biotics. I had a procedure Weds. to change out the tube and during a discussion with this IR doc he stated that these 'infections' after the tube change were more than likely not infections but the symptoms (extreme chills/rigors) caused by a reaction from some kind of chemical released by bacteria disturbed during the procedure. So, after the procedure they kept me for four hours for observation and sure enough, uncontrollable rigors set in as before but this time per the IR docs orders they treated me with a dose of demoral. Within a couple of minutes the rigors ceased. I napped for a couple of hours to sleep off the effects of the demoral and was released feeling a little groggy but fine. I now realize that I was hospitalized at least a few times and treated with various anti-biotics needlessly. And I always had reactions to the meds - usually nasea, diareaha. This doc also wondered why the tubes were changed out so often. Again, my treatment over the last several months may have looked different had this IR doc been a part of the discussion. Knowledge is power... Blessings and healing to all, bob Fri, 30 Jul 2010 12:05:40 -0700 http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=32931#p32931 32931@http://www.cholangiocarcinoma.org/punbb Darling,          Time is going by without you, darling, and I find it hard to grasp that two whole years have passed since you were here with me.          Where does time go? I keep myself very busy and work very hard. I think you would consider this very sensible but the world is so empty without you to fill it.          You were such an interesting man and such an inspiration to me. I was always happy surrounded by your love and enveloped in it. Now, without that love, I feel a lesser person and one who is grasping at life but finding little meaning in it.          I know that this is because you always were the best part of me. You challenged me, encouraged me, taught me and opened my eyes to the world around me. You gave me a perspective, a framework, a structure to my life. Along with this you added your warmth, your tenderness, your kindness, your sense of humour and your love. You were proud of me, grateful to me and you loved me. You made me feel strong, confident and protected. For 27 years our world was filled with love and laughter. We were never bored or depressed, just happy.         I read a comment in my hospital diary that you had made when we were told that your cancer had spread, "Well, I suppose I'll have to accept that I'm mortal after all", you joked to me and the doctor. How brave you were, darling. How was it that you never complained or expressed self pity? Do you see what a lesser person I have become: self indulgent and self absorbed?        My life now lacks the intellectual perspective you gave it, it lacks your love and laughter and is filled with emptiness. I go along filling in time. The present has no meaning, only the past has that. I see no future, just a series of endless next steps.       In the last few weeks I stepped off this conveyor belt and the present became a reality for a while as I sank myself into you again, desperate for a hug, some words of comfort, a little joke perhaps. Then the pain and torment of those terrible last few weeks came into focus and it was unbearable, of course. However, I managed to replace this with memories of more positive and beautiful times, with the help of some old photos and momentos. And so I have come through again, beyond the moment where you took your last breath, to the first hours after your pain was over when your struggle ended and mine began.      Poetry and music have helped to sustain me over these past two years and, during these past two days in Italy, I have read some poems that we both loved and others that now hold meaning for me.      Here is part of a poem that expresses the pride I feel in the contribution you made, both intellectually and politically, to move humanity forward with a vision which was, as your friends and colleagues have said, far ahead of its time. ..." Near the snow, near the sun, in the highest fields,      See how these names are feted by the waving grass....      The names of those who in their lives fought for life,      Who wore at their hearts the fire's centre.      Born of the sun, they travelled a short while toward the sun      And left the vivid air signed with their honour"...     And this poem expresses my ongoing love for you. I will never say goodbye, darling, but will keep your love alive, forever inside me. I am holding you in my heart and will never let go.     " I carry your heart with me (I carry it in my heart).        I am never without it ( anywhere I go you go, my dear, and whatever     is done by only me is your doing, my darling).        I fear        No fate ( for you are my fate, my sweet) I want        no world ( for beautiful you are my world, my true)        and it's you are whatever a moon has always meant        and whatever a sun will always sing is you         here is the deepest secret nobody knows         here is the root of the root and the bud of the bud         And the sky of the sky of a tree called life; which grows         Higher than the soul can hope or mind can hide,         And this is the wonder that's keeping the stars apart.         I carry your heart ( I carry it in my heart)."             With all my love forever                         Pauline Fri, 30 Jul 2010 09:59:02 -0700 http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=32930#p32930 32930@http://www.cholangiocarcinoma.org/punbb I don't expect him to gain back much of anything but he looks like a walking bone and even if he put back on 20 you wouldn't see it.  he eats whatever he wants but never fatty foods, cereal and milk, he has whatever I make for dinner. he has pb&j sandwich for lunch.  he doens't notice any foods except maybe hamburge and some heaveir meats to not sit well. what he eats and all has not affected him one way or another on bloat or gas and options are not an issue.  When they say he is not even retaining pain meds on top of it, shoot, doesn't matter what he puts in even with water, it ain't working!  We shall see. I'm not realy looking for solutions or advice, just venting who sucky everythign is. His nerve block is on Monday so maybe that will take his edge off. Fri, 30 Jul 2010 09:37:52 -0700 http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=32929#p32929 32929@http://www.cholangiocarcinoma.org/punbb My little brother has begun his cancer battle.  CC, stage IV that spread to his bones (spine, hip, shoulder).  Multiple tumors in abdoman and spine.  Radiation treatment began with some urgency on his spine and gemzar/xeloda chemo began on 5th day of radiation.  I live 1400 miles away from my brother and I feel disheartened I can't be there and feel helpless. Fri, 30 Jul 2010 09:00:52 -0700