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(29 replies, posted in General Discussion)

Hello Jeff, I read your posts with much interest and appreciation.  That is not the best news but there is some good stuff there, that your liver is OK and other organs are stable.  Sounds to me like a wise decision to take the break and then try the other treatment (EFT) that interests you.  I will read up on that, hadn't heard of it before.  Sounds like your physician is perceptive and supportive, as you are too.

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(34 replies, posted in Introductions!)

Hello Wests, so sorry your mom has gotten this news....and I see from reading your follow up posts that you are looking a little further into comparing doctors' opinions.  Although the seeking out can be exhausting, with no guarantees, I'd avise looking for a second opinion on the surgery.  My husband was given almost exactly the same words...and told no surgery possible, but we did some further consultation in Seattle after I made calls to MD Anderson and Memorial Sloan Kettering...and those were way far from us.  But as it turned out whoever was helping us at one of those med centers said try to get in at Seattle Cancer Care Alliance, because actually it is the same kind of comprehensive center.  It turned out that the oncologist my husband saw had just moved up to Seattle from MD Anderson in Texas.  He took a lot of time with my husand, had more tests done and advised trying one type of chemo...which didn't make any changes, but then as it turned out a surgeon in our hometown after reviewing his records was willing to give the operation a try.  Since every case is different, who knows what could happen with your loved one, but one thing I am 100% sure of is that if my husband hadn't gotten further opinions, had just taken the first diaganosis, cancer of unknown primary, and had gone from me by now, the thing I would be asking over and over is "what if we'd at least gotten more opinions?"  Add to that, each physician has a unique base and may notice something different in the results.  If you get a few viewpoints, and they agree on most but with some variations then you feel like you have choices.  It's worth asking for other reviews of the case, and distant places can do some of the reviews of the scans and tests from a distance...you don't have to go there right away.  Keep asking until you are satisfied you have all the info you need to find help for your mom, and also take rest breaks in between.  What I remember is the constant questions, that I had or doctors had, and the scheduling and emailing, at one point I thought I would literally come unglued, unhinged....etc. Every moment of my day was about what would the next dr. say.  My husband was so stunned he could hardly function.  Eventually we started taking day trips/ time-outs, even if just in town or on the back porch.  Well I've gone on long enough.  I sure feel for you and your mom and wish you the best and think you are doing a good job of following up on your questions.

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(6 replies, posted in Introductions!)

I haven't been here in several months...but reading through my post in January and the follow ups people wrote is so uplifting.  Because, we did it, we are in our new house, have been here a month and my husband is comfortable, has his TV room, his collections set up, all the things that were "home" to him are here, and the location is 2 minutes from two grocery stores, a suburband office of the major clinic downtown, a pet clinic for our two cats, post office and car wash about three blocks away.  Best of all, the surrounding area near house has pine trees, a hilly bluff to the west, birds and squirrels in the yard, and plenty of room to add in plants from our old place.  We haven't solid it yet... DH took charge of hiring painters, cleaners, new carpet, so his depression lifted as he had a project to direct.  Next will be the estate/garage sale to sell off lots of items we aren't bringing.  We qualified for a regular homeloan (no "creative financing") and since the old house had been paid off for a few years, it was scary having a payment again, but when the old house sells, we can refi or pay off the loan.  There were some rough spots along the way...AFTER we signed the closing papers, my husband got anxious and non communicative and finally told me that I "forced him" to buy the house.  He was the one who said "let's make an offer."  I spent a lot of time talking with the counselor at cancer care who described to me a process of grieving for the old house, how people have to work through the relationship they had with the place they are leaving...that helped me to see that maybe Tom's reaction was not uncommon.  I went ahead and moved a few items to the new house and said he could take his time...if his next scans showed something bad, he could decide whether to stay in the old home or not...we could always put the new place back on the market.  Yeah we would have taken a loss, but this possibility seemed to work for both of us.  I felt kind of trapped too...and then after he got some good news on his scans, I started crying off and on for weeks over leaving the old place.  But we have made our peace with it.  Our new home is in a quiet neighborhood but with access to main roads that go right to downtown and hospital areas.  My husand has a "job" now which is going through all the boxes and bags that he moved by himself, little by little in his pickup on days he had some energy.  It's taken us four months to move, and we are not done yet.  He can go out to the attached garage and sort through things, and we keep finding items we'd forgotten about.  Now he's planning a yard sale at the new place.  Well this is kind of long, but I just wanted to update and say thanks for listening and to all who are considering a move, for us it was worth the upheaval to be in a location where we are connected to the community.  Whatever happens next with my husband's cancer, we do have a new chapter to our story---the adventure of the move---and that has made me feel more courageous.  Last winter when the snow was so bad, I was becoming addicted to looking for houses online...got worried about myself.  But maybe it was just my intuition saying git while the gittin's good.  My anxiety level is down so much, and my husband's behavior says "i'm happy we did this."  Of course he hasn't SAID this, but I know the signs.

Hi Joyce I haven't been here for several months but right away saw your question about liver resection...My husband had a resection Jan 2007; he was weak and didn't have much appetite for several weeks.  Was in the hospital 10 days.  After he came home, I and friends who came over would have to remind him to eat or drink.  One nurse who helped a lot with the info she gave said that people with this drastic surgery plus all the anesthesia after effects, for awhile their hunger and thirst seem to be disabled.   So we have to keep offering little bits of whatever they will eat or drink, and water on a schedule.   My DH couldn't drive for a couple of months and even then it was just around the block, then a few blocks.  We would go out for walks and each day go just a little bit further.  The drs didn't advise chemo as the follow up tests didn't show anything but a lung spot that had been there a long time and didn't seem to be growing.  He did have radiofrequency ablation to that spot six months later, and then rfa again this past March.  Your post got me thinking back to those rough post-surgery weeks, and how I worried about what he was eating.  He would go through phases of not having much appetite for a year and even now occasionally he doesn't feel like eating anything for dinner except some soup.  I hope your husband continues to gain strength...From our experience the lack of appetite is normal and as long as he will take some of what you offer in the nourishing food and drink, and you just keep at it, he will eventually regain appetite.  My DH said that for months everything "tasted like the hospital" or just had no flavor, except for certain ice creams that he liked.

I'm sorry to read of your distress...your love for your dad comes through so clearly.  I like to think of you helping with his computer.  Something lovely about that statement...That you had a closeness with him, something in common to talk about.  (My dad wouldn't learn computers)  May this time continue to show blessings among the sadness.

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(18 replies, posted in Introductions!)

Hi Christina,  Thanks for your response...it is worth the time!  Another thing I think about is what you mention....for the doctors to see the patient recover and thrive, that is a blessing for them too.   Tom's main oncologist, Dr. C with the original diagnosis had told us to take a trip if we wanted to, Tom would probably never have a chance again.  He said some chemo might be possible but was not very reliable.  So we went to Chicago in summer of 2006.  Then after that we did a second opinion consultation at the University of Washington/Hutchinson Center in Seattle.  Had a great consultation there... and the guy we saw had just transferred up from MD Anderson, the major cancer center in Houston (?)  He also said the tumor wasn't operable but had more ideas about what chemo might give some help.  But it wasn't until almost 6 months later that Dr. H, the surgical onco said he was willing to try to remove it.  Every time we see Dr. H, he just beams, says Tom is one tough guy, "see you in six months."  Tom also had a radiofrequency ablation to a spot in his lung, at that young radiologist just loves his work, is full of positive energy, and works with lots of new technologies.  He says is such an "upper" to see the tumors shrink with what they can do.  Then back to Dr. C again, last time we saw him before Christmas, he was grinning and shaking his head, said, "Tom I never would have believed it, with your original symptoms, but here you are."  Cancer apparently just folllows different patterns in different people.  Dr. H the surgeon did say that if he'd waited much longer the operation may not have been successful.  The dr's really do need to see that their work is having an effect.  Also whatever Dr. H learned from working on Tom, he is a stronger surgeon now because of it...so all contributes to the common good.   I am glad to hear that your Chucks enjoys his car work and club involvment.  Those are best things he can do for himself, just continue "being himself" not the disease.  Tom is at a lull in his hobbies, and fighting depression, is on medication for that.  One reason I want to move back to town is that there would be close by places we could go, even just to the grocery store or nearby restaurants, short trips that would change the scene for him but not be too exhausting.  Our brains need different things to pay attention to, to help them heal psychologically.  Well I'm so glad to have met you Chrissy...feel free to email me about faith and spiritual things, I need a boost once in awhile.

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(6 replies, posted in Introductions!)

Thanks Carol for taking time to read my long post...sounds like you had valid reasons to stay put.  The uncertainty of waiting for a buyer plus all the medical things, plus the kids.  We have some differences in our situation...me wanting to downsize and move, him thinking "maybe" as opposed to "no" plus he is in a stable period now with his medical issues.  Will need more help eventually...the house I'm going to look at tonight is right by the grocery and pharmacy we use plus some close friends are in the neighborhood.  Maybe something about seeing it will help us think more in one direction or the other.  I appreciate your story because I hoped to hear from anyone who was dealing with real estate/moving at the time of medical treatments.  I hope things are going well for your husband.  Even when they stabilize the ground always feels a bit shaky.  We don't have kids, but if we did I'd be considering the impact for sure.  Thanks again.

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(6 replies, posted in Introductions!)

I'm not sure where to post this...I'm not new here but not a regular poster.  My husband originally was diagnosed cancer of unknown primary because of a tumor in his liver that apparently didn't start there according to the biopsy results.  Fast forward through  a long story, Tom had the liver tumor removed in Jan 2007, a grueling but successful surgery and his surgeon said by observing the pattern of tumor growth (or however he figured it out) he diagnosed it cholangio carcinoma which had moved to the liver and formed the tumor there.             Anyway, now it's been a year, and Tom's had two follow up scans that show no new tumor growth.  He still has prostate cancer and is on testosterone reduction therapy to reduce that tumor.  He sees a p.c. specialist in a couple of weeks for further advice.                                                              Sorry, but the "enter" key on my computer is broken, so I can't make a new paragraph..                                Should we move?  That question is about whether we should take a chance on moving while Tom's going through all this.  On the one hand he is alive and able to make decisions and do things around the house, and he's depressed and bored.  We have lived here since 1985, in a rural area.  We have neihbors, it's not totally isolated, but pretty close to it in my perspective.  I am tired of driving miles and miles and this winter has been very harsh with lots of ice and snow.  Tom loves this place because he and his brother built it;  I love it too and it will hurt a lot to say goodbye to the house and land, since we were the ones who bought the land and planned the house...and have been the only owners.             However, I keep feeling drawn to different houses in town, and I really think it is impractical to live in the country.  I have various activities would be more involved with if I could be close to them.   Tom just stays on the couch and reads or does ebay sales on the computer.  He doesn't drive to a job anymore.               Well, surprise surprise, but after we slid off the road in the truck a couple of weeks ago, he finally said "Maybe it would be a good idea to move back to town."  He goes back and forth about it.  He says, "if my health takes a turn for the worse, I want to be here in our familiar house."   But when we do go look at some homes for sale, his energy level perks up...he mentions where he might put his TV and the couch.  I have been keeping to myself the fear that if we did move and then he got sicker, I would blame myself for taking him away from "his" house and not letting him spend his last days there.  On the other hand, have told him I am not spending another winter here.  (If he was healthy that would definitely be the case...I would stay with a friend during the week and come home on weekends during the winter months--I know a couple of people who would rent out a room to me)     So we are going back and forth now that we are both interested in moving...one day, he just wants to make an offer on a house right away and get the process started, the next day he is back to "what if my next test is bad and we're right in the middle of closing a loan".  Our plan is to find a new house first, get an equity loan to close the deal and then sell our country house to pay off or pay down the new mortgage.  Our country house is paid for.                                      I like the experience of looking at houses, seeing which ones we both feel in harmony with.  That is a good signl.   I think we are both in the stages of grieving and letting go of the house we've been in for so long.                        Then part of me wants to tell him, if we move now, this is THE time to do it, because you are relatively in good shape (considering the cancer) and we would enjoy the next house and have some good times there...he talks a lot about "after he's gone" and I finally loosened up and said  "after you're gone" I would love knowing that the house in town where I will be living is one we picked out together.  I dread the thought of leaving our country house.  I dread the thought of him dying while we are out here and me coming back to this place alone.  Actually I had wanted to move back to town a few years ago, before cancer joined our lives.  He was very resistant, but said "Maybe when I'm older and we need to be closer to medical services."  Well that time is now.  But...what I wonder is can the moving be just part of life changes...lots of people downsize or relocate in their 50s.  Although moving itself is nerve wracking, we have a chance to have some new experiences together.   JeffG you said you moved several times since your diagnosis, that's what got me thinking about posting this question.  Thanks to any who respond.

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(18 replies, posted in Introductions!)

Hello Chrissy, so nice to meet you, and I read your story with much interest as the two of you had a similiar experience as we did.  Now, we are in our 50s, and I am so sad to hear that CC attacks younger people...when you have so much ahead of you...so unfair.  What I notice though is that your Chucks had surgery in Jan 2007 just like my Tom did and in same way he was originally told the tumor was inoperable, and then was referrred to a surgeon who looked at all the scans carefully and said he was willing to give it a go if my husband was.  So here we are a year later...and Tom's had no recurrence according to latest PET and CT scans.  The surgeon took out the tumor and about 1/3 of Tom's liver and some lymph nodes.  Now about the anxiety; it just came in waves for my husband; the second six-month set of scans he felt even worse, even though the news was good.  He couldn't sleep for days before the scans and after his dr said it was OK to relax and have some good holidays, my husband could not shake his depression and finally went on anti depressants and anti anxiety meds and some counseling.  He couldn't shake the thought that "some day the news will be bad again."  He's finally coming out of it and starting to get out of the house a bit, taking more interest in everyday things, although he has about 0 energy level.  He also has prostate cancer.  For me...I go through the "what if" ups and downs too.  There isn't any certainty except what you can create for yourself.   I sure do feel for you.  We are in similar boats on the same sea...Spend as much good times together as you can...find a counselor or support group where you can really open up and express your fears.  It's hard to know how much to reveal to your partner.  I realized that my husband was keeping a lot of fear inside, seeming to be indifferent, but actually he was terrified.  Part of that was from the news about the lymph nodes...almost all that the dr took out had no abnormal cells but a couple did.  Over the months the fear of those "bad cells" floating around his body just took over.   One thing that helps is do some things for yourself that have nothing to do with thinking about cancer, and same for Chucks, encourage him to have daily activities he enjoys that are "his" and don't belong to the disease.  Sometimes the fears will make me queasy and immobilized...but those times do pass.  I don't always read here at cc discussion, not as often as some people, but do check the board and will keep track of your story.  I can sure relate to so much.  Sarah

Robyn my sincere condolences.  You did your best for him despite what the "team" didn't do.  I am so glad you took the time to post, and also thecdr, thank you for saying that about reasearching earlier.  My husband is the one with cc (but no current signs after surgery and follow up scans)  However, he became obsessed with what his last days might be like...I'm not sure why this wondering took hold of him, but the good thing was that over the holidays at a gathering, he met a lady, a relative of a friend, who is a hospice director in another state.  She spent a lot of time visiting with my husband which I sure appreciated because he was so depressed, and he said later, the best advice she gave him was to investigate the hospice services in town before he needs them.  At the time I thought he was being to morbid and negative, but I realize this is my husband's way of being knowledgeable and feeling in charge of something.  There are two or three hospice groups in town.  A painful subject and conversations, but we have to face them .  Thanks for the info.

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(24 replies, posted in In Remembrance)

Dear Ted, I haven't been at this board for awhile but would always read your posts.  Thank you for the link to Patty's memorial video.  It was a privilege to see it and get to know her face and see what a beautiful person she was.  I am so sorry for your loss.

Is there a possibility of the doctor or social worker inviting your dad to meet with hospice workers or learn about hospice "in case he needs it later on although he doesn't seem to need it now."  Could one of these professionals tell him/you "I advise all patients to talk to someone in hospice before they ever need their services."  Maybe this would open a door if your dad sees the hospice connection as not focused on his particular situation but part of the dr's protocol.  Then you could said that you agree as it would help you understand what hospice does and doesn't do and who to call IF his health turned worse "later on." 

My husband is in a similar situation...but---he is told by doctors "not weeks or months but maybe a year or a few."  But my dh just keeps wanting to know about hospice and death with dignity laws...has a hard time enjoying the here and now and wants to know  all the details of the eventual.  My husband is eating well and not in pain...his recent scans didn't show anything new.  So people sure have their differing ways of dealing with this.  As much as possible, let your dad have his view of things...but do get all the info you can.

Over Thanksgiving we had some friends over and they brough along a sister who is a hopsice director in another city.  She invited my dh into some helpful conversation...she advised to get to know palliative care and hospice people before there is an acute situation. 

I feel for you and hope you have found some effective ways to deal with this dilemma.

HI Charlene, My husband had surgery on liver last January, but then had RFA on a lung spot four months ago.  He stayed overnight in hospital though some people go home same day.  Tom had a blood pressure slight problem (I can't remember if it was high or low) most likely from anesthesia so that's why he stayed the night. 

The procedure he tolerated easily, nothing like surgery.  The radiologist sticks in one thin needle and the procedure is watched on screen.  when the needle hits the target area, then the dr. pushes through the skinny needle some even skinnier probes that fan out and ablate, or destroy, the target tissue.   This is done with radio waves...the effect is "cooking" the area.   Then this spot gets inflamed.  The first month scan, the dr said the spot always looks bigger rather than smaller...so don't be surprised or worried.  The surrounding tissue gets inflamed and the tumor tissue will die off.  So far my husband has had two follow up scans.  The area looks smaller.  They monitor for 6 - 9 months.  If the spot doesn't disappear, he has the choice of repeating the ablation or having a surgical excision and biopsy. 

Overall it is a relatively painess procedure compared to surgery.  There is stress on the body...but minimalized as much as possible.

I found more info on RFA by searching for "Interventional Radiology." 

Hope this helps.

Sarah

Glad you got yours Jeff G.  I just wanted to add that SSDI was easy to get for my husband...he filled out the paperwork and the dr did his part with the prognosis.  At the SS office they told my husband that first he would get a letter saying he did not qualify for SSI as I am still working and we have a family income...but then after that he would likely get an approval letter for SSDI and sure enough he did and it was four months retroactive.  What the SSDI is for those who may not know, it is really getting your social security money now, so Tom is receiving what he would have received later after standard retirement age.  He was diagnosed with unknown primary in May 06 and after his surgery of Jan 07 got a more defininite diagnosis of CC.  But it is a relief to have this monthly check for him...he earned it since he started working around age 16.  The paperwork we got said his case would be reviewed in 5 years...which was sad and funny at the same time as it's another way of saying "if you're still around, we will contact you."   But he has been receiving SSDI for a year and a half now.  So I guess they will contact him in 3 1/2 years.  A long shot, but we can always hope.  Even though it's upsetting to fill in the paperwork, getting the $ is worth it, gives you one little bit less worrying about as far as the bills go.

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(5 replies, posted in Introductions!)

val wrote:

Hi my name is val, we found out six months ago that my husband has CC. When we found out the tumor was 3 1/2 inches by 3 inches. He started chemo five months ago, doing gemzar and 5FU. He had a stent put in the first month because the bile was not draining. We found out three weeks ago the tumor has reduced in size to about 2 inches and he had the stent taken out two days ago.
I asked his doc if the chemo will make the cancer ago away and he said no that it would just keep it at bay....
Has anyone out there had anything like this happen? did the chemo stop the cancer or did it end up coming back?
The chemo makes him very tired and he doesn't do much but sleep.

so glad to hear that he had success with this chemo; the "at bay" is what my husband is liviing with also.  I don't know about the option of stopping the chemo and how long the tumor would stay at the smaller size, but I do think that is an option you should ask about.  From what I read and glean from talking to others, chemo patients are given breaks and monitored through scans.  My hub didn't have any success with chemo so it is good news that yours had some response, that sounds so encouraging, but it would be nice for both of you if he could take a break.  I know that's not much help but just wanted to let you know I understand about "keeping it at bay" and at this point in time my dh and I are living with that as the norm.  It gets tirning and frustrating but my husband doesn't have nausea and has some days with a bit of energy and still can drive and go on short outings.  If he was on chemo I know he would not be able or willing to.

Thanks so much for saying this, Bill.  Now reading your post I see I was thinking along the same lines in the post I just made a couple of minutes ago in the other thread.  I was kind of long winded, I know, but it was all to express what you say here about the value of a good physician, one you trust to know the intricacies of your illness and your person.

Peter wrote:

Having said this I must add my oft repeated suggestion/plea that people always get a second opion regarding resection of the tumor.  Use the search tool at the top of this page and enter 'second opinion'.  You should get a number of hits.  In summary,  find a cancer center(s) and surgon with experience with CC. 
-Peter

I'd like to affirm this advice...My husband had a liver tumor and was diagnosed as "unknown primary" and told by two medical oncologists that the only treatment was systemic chemo which would probably not do much.  The dr. (Dr. C) he chose as his main ono, my husband hit it off well with him...and this was his "second opinion" guy as the first one neither of us felt comfortable with.  But still, Dr. C also said that the tumor was inoperable.  Six months after this diagnosis, and a try out with a chemo that had no effect, Dr. C had my husband scanned and said the liver tumor was starting to grow (up til then it hadn't increased in size)  So THEN after all that time, Dr. C said, "Well, I'll set you up with an appointment with Dr. H who is a surgical oncologist and one of the most accomplished at liver surgery"  What?!  The thing I still don't understand is that Dr. H the surgeon is employed in the same oncologist group that Dr. C is the head of.  Why didn't he refer my husband to Dr.H months earlier.  So as it turned out, Dr. H told my husband, "I might not be able to get this tumor out, but looking at the location from all the scans, I think I can reach it and I'm willing to try."  It was a 4 1/2 hour surgery...and five months til my husband felt halfway normal again.  But he WAS a candidate for surgery even though the first two oncologists said no.  Dr.  H did not give false promises and said he would do the best he could but wouldn't know til he looked inside exactly what he could accomplish.  But he reviewed my husband's case carefully with a surgeon's eyes and ended up giving a different answer.  On top of that, my husband recently had the lung spot that also showed up on the original scans in 2006 treated through radiofrequency ablation.  The first onco we saw just laughed at the idea of RFA and said Tom was stage 4 and none of those "new procedures" would help.  Now my hub and I know that cancer could return in the liver area; we are not naive, but he is alive and moderately well because he got one more opinion.  I am still frustrated and a bit angry witing this, and it all happened nine months ago, but when the head physician oncologist doesn't refer a patient to his top surgeon with a surgical question, I just don't get it.  So please, all who read, investigate the options...talk to surgical, radiological, and medical oncologists.  Each has a different perspective because they work with different treatments.  Actually it was surgeon Dr. H who finally gave my husband a more precise diagnosis of cholangiocarcinoma....how strange that in that case knowing it was cc actually made us feel better because we knew what area the cancer started in and what symptoms to expect.  That "unknown primary" scared my husband so bad because not only did he have a terminal diagnosis but it seemed to be just floating in his body.  My hub was given 6 to 9 months and he's still here after 15 and is up and around the house...does the hosuework while I work.  He had taken early retirement and this isn't exactly what he'd planned, but is grateful for the last two doctors that they took a chance on him.

We did quite a bit of flying around and consulting out of town a year ago...all seems so fear-driven now, but it seemed necessary at the time to find out what was available.  As I mentioned in other post, MD Anderson people were very helpful in reviewing his records from afar...but we ended up going to Seattle Cancer Care Alliance and they finally had a plan for him to start a chemo, and then a backup plan for another kind, and then he ended up having surgery anyway.  What seems true for me now is that the consulting and learning phase with places out of town is worith it because it gives you a knowledge base, but that usually the treatment ends up being close to home and that is a good thing.  Also the more close to home cancer care groups can still follow advising of the big ones out of state (Anderson, Mayo, etc.)  this is all just general info I gleaned and conclusions I came to from our experience of 1996.  I wish you well...it is such a stressful time right after diagnosis.

cksvelasco wrote:

MD Anderson clinics as well as through your website of the Wake Radiology onchology centre in the US. Which one should we go to first? What treatment should he be put on? Oxaliplatin, Xeloda, Sorafenib, Herceptin (I hear there is a clinical trial about this one at Anderson for this type of cancer), Davanat? We are a bit lost and don't know what to do next? Please advise! We are also really happy to have found your website.

I Just wanted to say I remember my positive encounters with MD Anderson...it is definitely a place to start.  Although we ended up not going there, the patient intake coordinator communicated with us via email for a few weeks to get my husband an appointment and find the best dr to consult.  At that time my dh was diagnosed adenocarcinoma of unknown primary...it was in his liver but the biospy suggested cholangio.  He ended up having surgery after chemo did nothing for him...and a local surgeon reviewed his case and was willing to give it a try and removed tumor which was in liver but then he typed it as cholangio.  Very strange turn of events...definitely investigate and have hope at this point...something so deep within the body, it is hard to know at first which is the best approach.

michele wrote:

Thank you -have made some progress -the insurance company backed down on  appeal forchemoembollization and when he finishes the next cycle of chemo will look at this alternative. Am still trying to learn all I can about the treatments for this disease, of which ther is so little out there...many thanks for your experience and advice.

So glad that your insurance status got updated, and I'll be looking for your reports on the chemoembolization.  It's a relief to know what alternative will be offeredand that insurance will support it.

Is he taking any morphine?  There is a jittery/hyper phase to this, at least for my husband there was.  It wasn't exactly anxiety, but more like a racing mind.  When they first started him on it, he went to the computer store with me and kept going from aisle to aisle and talking about the products, more than he usually does out loud.  Also, meds can interact...he went through a time when he couldn't sleep much and kept taking Ambien which seemed to have a rebound effect of restlessness.

So one thing you might consider is what other meds he is taking and whether they have side effects.  Also maybe the anticipation of chemo, with or without any other meds in his system, brings on a bit of "hyper" ness.  Just some possibilities.  Is he already on chemo?  I'm not sure from reading your post, but I just woke up smile

Good question to ask...any behavioral changes are worth noting and investigation.  Hope others here have some info.

Blessings,

Sarah

At first my husband was categorized as "cancer of unknown primary" because the liver tumor came from elsewhere, according to findings of the biopsy.  It was adenocarcinoma, a glandular cancer.  We learned that that is a more general name.  His first two oncologists told him the liver tumor was unresectable.  One of them said that sugery would send blood supply to the healing site of the surgery even if it was removable, so that would send more blood to where there could be remaining cancer cells.  I don't know whether that is a commonly held viewpoint.  He tried Xeloda but had no results.  He asked about chemoembolization, but the oncologist he was seeing then just shrugged it off.  Finally after Xeloda didn't work and the tumor started to grow, his dr sent him for consultation to a surgeon in the same group of oncologists because the surgeon had done more liver work.  This dr, "Dr H" said he would be willing to try to remove the tumor if my husband was willing to give it a try.  He said it could be a long surgery with a long recovery, or he might cut in and find the cancer spread and nothing he could do.  In that case it would be a short surgery.  Tom was in surgery 4 1/2 hours.  The surgeon got the tumor out.  He did find some malignancy in one nearby lymph node.  However, he and my husband consider the surgery worth doing.  For one thing, as my husband said, there would be an actual person looking at what was inside of him, instead of just scans and blood tests. 

So there you go.  Two medical oncologists said it was "unresectable" and one said it was possible to remove.  I don't know why Tom wasn't sent to the surgeon earlier to get his opinion. 

Now, how this might apply to your situation is just a guess.  It could have gone the other way.  Dr. H might have gone in and found too much malignancy spread and would have quit the operation.  This is a very exhausting surgery.  But if you are not satisfied with the "unresectable" diagnosis, ask very detailed questions.  Also look for a surgical oncologist who specializes in the liver, bile duct area.

It's interesting that I was told to seek second opionions outside of the oncologist group where you are a paitent.  yet the dr. who did the surgery is within the same group but had a different opionion on whether this was possible.

I'm not sure what the best way to proceed with the insurance is.  We have Uniform Medical.  They have covered most things.  We have been very lucky.  I don't know if Xeloda is not the standard for the cancer that you are dealing with.  I think it's a widely used chemo.  Tom didn't have too much side effects, just fatigue and the red skin on his hands and feet, but that wasn't too bad.  His hair thinned but didn't fall out.  From what I read, Xeloda works well for some people, doesn't do anything for others. 

It will soon be a year since my husband got the unknown primary diagnosis, which was later changed to choloangiocarcinoma because of the surgery.  He's still up and about after a lengthy, exhausting recovery.  We know that cancer is still lurking, but his follow up PET and CT scans were clear.  We have adapted to a slower paced life, but he doesn't have the abdominal pain he had last fall.  So diagnoses and circumstances can change.  It sounds like right now you are just trying to find your bearings.  It feels like a nightmare for sure.  I don't know if I gave much in the way of advice.  I always lapse into telling stories.  I'd just say try to find out as much as possible about the non-chemo options.  I'm not anti-chemo, just find the stories of new-tech and targeted treatments and then wonder why these are not at least offered to a person, so look for doctors who specialize and get consultations with them.  The medical oncologists focus on chemo.  However, if chemo can shrink a tumor to make surgery more likely, then that makes sense too.  I guess the best thing is to be as informed as possible and then make a choice what to try first.  I'm sorry I can't be more helpful about the insurance. 

Blessings,

Sarah

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(8 replies, posted in General Discussion)

Ron Smith wrote:

Hi Salsarcat

I
How is your husband faring now?  Any follow-up tests or scans yet?

All the best to him

Ron

Thanks, he had follow up CT and PET scans a couple of weeks ago that didn't show any new flare ups, although the dr in his usual grim way said "Well, it's only been a couple of months."  That wasn't the surgeon, who is very upbeat.

Tom had an addiction to opiates years ago and has a high tolerance.  Then with the cancer/gallbladder pain he was feeling last fall, he was on morphine but needed a much higher dose than a lot of people.  He told the intake people about this when he went for his pre-surgical appointment.  But he was in surgery so long that the pain meds had started to wear off when he came out from anesthesia.  They kept giving him more, but it took awhile for them to take effect.  He had an epidural plus IV.

He hated the hospital because of the nose and beeping things.  He was on Dilaudid for a day or two.  It worked on the pain, but he hallucinated terribly and got no sleep.  It was quite a week. 

But mercifully his memory of it is starting to fade.  He knows they all did their best to take care of him.

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(8 replies, posted in General Discussion)

Ron, that's amazing that you tolerated two surgeries well...and got out of hospital rather quickly.  My poor husband, I thought he was going to go insane from post surgical pain after his resection in January.  Glad that you are out and about, and I wish you the best.

Oh, I am so sorry to read of such a sudden loss for you.  I don't have any definite answers...when my husband was diagnosed last summer, the docs said maybe he'd had the liver tumor "about a year and a half."  At least that's what I remember, but I think it was just a guess.  The CC tumor was discovered on a follow up scan to a prostate biopsy.  Otherwise things may have followed about the same schedule.  Tom started getting abdominal pain in fall of 06 and really bad reflux and a little bit jaundiced.  I'm sorry I can't offer more but just want you to know you're not alone in the wondering.