Re: On the whole, I've had better weeks

Lisa,

I'm sorry to hear the news was not good.  You are in my prayers for both the conversation you have to have with your parents and the decisions you have to make regarding treatment. 

I know what you mean about feeling like your brain is working at half speed.  Once you can gather your thoughts, and look at your notes, maybe you can see if the procedure they're planning for Friday or Monday can be put on hold while you get a second opinion.  Once you go over your notes you may have a lot more questions.  If that turns out to be the case, call Dr. Goldstein's office and see if you can talk to him.  That may help you make a decision.

My thoughts and prayers are with you.

Peace,
Mary

Re: On the whole, I've had better weeks

In less than 48 hours, I can say I am amazed at the support I've gotten from this forum.  Thank you so much.  I had several personal emails (note to future members, PLEASE put your email contact in your profile).  I have spoken to Dr. Chapman's nurse and my doctor and they are making arrangements to get my records up there for review, which he can do initially without my being there.  If necessary, I can hop a plan to St. Louis.

In the meantime, I am scheduled for the PCT on Monday, as Dr. Goldstein feels it is urgent to decompress my liver.  That is going to have to be done no matter what else happens.  It doesn't sound fun at all.  I'll be having it at Baylor, which is less than a mile from my husband's office and our house.

Lisa

Impatient patient.

Re: On the whole, I've had better weeks

Lisa,Lets change if to "when" I hop a plane!!! Positive Energy and prayers!!! When you come to St. Louis you have a ride from the airport and whatever you need!!!
Lots of prayers and HOPE-Cathy

Re: On the whole, I've had better weeks

Hi Lisa,

I am glad you are getting a second opinion from Dr. Chapman. In my own case, a second opinion made the difference between no surgery and a resection. I'm also glad to hear they have quickly ordered a PTC for you. That should really help to relieve your symptoms, and having your bilirubin lower will be important to any future treatment or surgery. Don't worry too much about the procedure itself. It is relatively quick and a nurse will be administering medictions to keep you comfortable. Admittedly, living with that external bag is a nuisance, but nothing more in the scheme of things.

Again, I wish you the very best.

Mark

Re: On the whole, I've had better weeks

Thank you Mark. You know, that was brother's name.

I'm waiting to hear fr radiology re what I need to do for pct Monday. Honestly , it will be the first time I'm ever spent a night at a hospital.

Spoke to dr goldstein's assistant and she getting all my records ready to ship to dr chapman.

Things are moving fast. I'm just trying to stay above water for most of it. I'm gonna take the weekend to go hang out with old college friends.

Impatient patient.

Re: On the whole, I've had better weeks

I had my PTC procedure Monday. They kpt me a second night because I had difficulty keeping even liquids down. They let me go home yesterday and, again this morning, I had trouble keeping liquids down. They've given me some good meds to stop throwing up.


I do feel better after the PTC.  The abdominal area where there are inserted is sore and the tubes are kind of a pain. Not to mention gross to empty. But they are draining.


Just spoke to Dr Chapman's office in st louis and he does not feel I am a candidate for resection now, without chemo and radiation to shrink the b@st@rd first. So, he's in agreement with Dr Goldstein here.

That's what I know today.

Impatient patient.

Re: On the whole, I've had better weeks

Gosh, I can't believe I haven't been online here since October 17!  So sorry - there is much going on in my world.  My oncologist and surgeon here felt I needed the PTC procedure immediately, as I was extremely jaundiced, itchy and full of, well, bile that wasn't going where it needed to go.  I did that procedure here at Baylor in Dallas 10/14.  It went well.  I spent 2 nights instead of one in the hospital because I had nausea (so we thought).  I was sent home on Wednesday, 10/16 and that's about where I stopped posting.  I couldn't keep anything down and by Friday, I was back at Baylor in acute shape with severe dehydration.  We spent the weekend getting me hydrated and then lost a day or so when the young internist assigned to me just kept treating me like I had nausea and not looking elsewhere.  Finally, my husband said, well, what does Dr. Goldstein say (my surgeon - although he didn't actually do the PTC)?  Long pause.... who is Dr. Goldstein?  Um, head of Liver Transplant and big dog at Baylor.  Well, once Goldstein got involved, things happened and they figured out that I had two blockages preventing anything from going in or coming out my digestsive tract.  One was a plump lymph node (although no sign of cancer cells in it) and the other was where the tumor was wrapping itself around my duodenum (?SP?) and basically choking it off.  Before I knew that, I was worried the PTC was going to kill me, I felt so bad (it actually turned out to have gone so well, they took the external drains out way early).   

So, I was back in Baylor for 9 days and I had a procedure called a gastrojejunostomy (gastro J), which is, in essence, part of what they do in a gastric bypass surgery.  They rerouted and attached my stomach to avoid the blockages, which couldn't be removed.  So, I missed 2 weeks in the hospital and home recovering.  While they were doing that, they went ahead and put in my chemo port and a feeding tube to use as a back up in case I had trouble recovering from that surgery or from the upcoming chemo.

I'm learning a lot (not that it was stuff I wanted to know) and I've lost all sense of modesty at this point.

I go back to the surgeon Thursday to check his work, but I think I'm healing well.

In the meantime, Dr. Chapman at Wash U did review all my scans, reports, etc. and was in full agreement with the folks at Baylor that my tumor is not, at this point, resectable.  He was in agreement with chemo course we have planned.  And, in the best news of all, my insurance only billed me $9 for his consult.  Best money ever spent.  Thank you to all who recommended him.  Once we see if this is shrinking, I plan to have him take a look again.  I want it to shrink enough to be removed, but placement is another sticky issue - mine is wrapped tightly around both sides of the biliary tree.  It hasn't spread, but it's just in the worst possible location.

I go to chemo class this afternoon, whatever that is.  I am supposed to start chemo Friday, but am still waiting on approval from Blue Cross.  Really?  I just spent 12 days hospitalized, had every alphabet test known to man and they drag their feet on approving chemo?????

So, all in all, I'm hanging in there right now.  I lost about 15 lbs over October and it was weight I did not have to lose.  So, I'm moving slow and in very baggy pants.  My husband has been an amazing caregiver.  I am trying not to overwhelm him with being needy, but I don't always succeed.

I was told by several medical friends in high places that they felt I was in a better place at Baylor than MDA for this particular cancer because of Baylor's top liver transplant program.  And, it's 8 blocks from my house.  I am very happy with my oncologist, he's kind, but no nonsense and isn't going to blow smoke up my skirt needlessly.  He's anal retentive and I like that in a guy whose job requires it.  All my primary care doctors (and my surgeon) said he was the best and the surgeon said he brought his own brother down from Tennessee to have him treated by Dr. McCollum. 

Anyway, that's my rest of October/into November.  I went back to work yesterday for the first time.  I'm working from home today and tomorrow.

Hope you are all hanging in there,

Lisa

Impatient patient.

Re: On the whole, I've had better weeks

Wow!   Lisa, you have been through a whole lot since we last heard from you.  Glad things are beginning to settle down for you.  Hope it just keeps getting better.  Take care and let us know how you are doing.

Love & Hugs,
Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: On the whole, I've had better weeks

Oh, my, what a story! We forgive you for not posting! smile
I'm glad things seem to be getting under control... I know, it changes day to day. I hope the chemo works wonderfully and you can get surgery.

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: On the whole, I've had better weeks

Wow!! You have been through it girl!! We are heading to Dallas as in a bit. I'm very curious about these Baylor Drs. My husband is going through Mda right now...and sometimes it seems like they are tip toeing around what they know but don't want to tell us... I am going to talk to my husband about getting another opinion. Gordon has a 8cm tumor in his liver local lymph nodes involved. Surgery wasn't a success in August but being re evaluated in a couple of weeks after chemo.

Glad your recovering okay!!! This is a roller coaster ride!!!!

Hugs and prayers to you!!

Heather

My husband is my hero!!! Love him so much!! We are going to fight the best we can with knowledge, support from friends and strangers and God getting us through!!

Re: On the whole, I've had better weeks

Wow, that is some update, Lisa. Glad to hear you are able to work now, I always think that sure helps a lot in coping and recouping. Blue Cross seems to be a stickler or stinker with our CC. I sure hope they come through for you as if you need that aggravation. Ha, ha I thought I lost my modesty with my first baby!!! I was in labor and when I got up to the Labor room the Nurse says, take all your clothes off and I said what? Here and now? Hang in and hang on, wishing the very best for you.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: On the whole, I've had better weeks

Lainy wrote:

Wow, that is some update, Lisa. Glad to hear you are able to work now, I always think that sure helps a lot in coping and recouping. Blue Cross seems to be a stickler or stinker with our CC. I sure hope they come through for you as if you need that aggravation. Ha, ha I thought I lost my modesty with my first baby!!! I was in labor and when I got up to the Labor room the Nurse says, take all your clothes off and I said what? Here and now? Hang in and hang on, wishing the very best for you.




As a step parent, there were a few indignities I skipped along the way, which is also why 0 nights in hospital before 56.

Impatient patient.

Re: On the whole, I've had better weeks

Heather wrote:

Wow!! You have been through it girl!! We are heading to Dallas as in a bit. I'm very curious about these Baylor Drs. My husband is going through Mda right now...and sometimes it seems like they are tip toeing around what they know but don't want to tell us... I am going to talk to my husband about getting another opinion. Gordon has a 8cm tumor in his liver local lymph nodes involved. Surgery wasn't a success in August but being re evaluated in a couple of weeks after chemo.

Glad your recovering okay!!! This is a roller coaster ride!!!!

Hugs and prayers to you!!

Heather


Heather, whatever I can tell you about Baylor or Dallas or anything, please let me know.  I literally live about 8 blocks from main Baylor near downtown - no joke.  I think my email is in my profile, but it's steglaw [at] yahoo.com.  Email me and I'll send you my cell, which is best number to get me.

My friend's husband who told me I was in the best place is a former UT Southwestern Med School prof, pediatric critical care guy, former Chief Medical Officer at Children's Dallas and was recently named to head Texas A&M's Health Science Schools.  He's a smart dude and I'm so glad that his wife shares him with us.

Lisa

Impatient patient.

Re: On the whole, I've had better weeks

Wow Lisa you have been through the ringer lately. Sorry that it has been that way but sounds like things are going better now. Keep us posted and will keep you in out thoughts.
Hopefully your insurance kicks it in gear. I know we never had a hiccup with ours but my employer also owns my insurance plan so they're a little better at it, I guess. Although we did renew insurance for next year and they wanted additional information this year to make sure my spouse really was my spouse....guess the almost half a million they have spent on his makes them want to see if he can be bumped off my insurance. There was nothing they could do.
Good luck and hopefully things stay positive.

KrisV

Any advice given is based on my experiences and should not be substituted for any medical recommendations. Please speak with your provider before making any changes.

40 (edited by LisaS Wed, 22 Jan 2014 17:09:59)

Re: On the whole, I've had better weeks

I can't believe I haven't posted since November. I've been reading, but sometimes that's all I can do. I'll admit to feeling pretty overwhelmed in November and even visited twice with a psychiatrist because I just felt so depressed and thought I might need some medication. I figured out fairly quickly that, as the dr put it, I was having a normal reaction to a crappy set of circumstances and decided I didn't need therapy or anti-depressants.

So, here's where I am in January. In October, I didn't know what we were dealing with, but I was Stage IIIB (extrahepatic, perihiliar) at diagnosis.  Active localized activity. One lymph node that was inconclusive for cancer cells.  Although they were unable to biopsy the actual mass during my ERCP, all tests point to a classic klatskin tumor around both sides of common bile duct, unresectable at this point, as they think it has invaded both lobes of the liver.

The external PTC drains have worked very well. I've had them changed out three times now as they get a bit of grit in them and leak (generally a 6 week lifespan, but one leaked 3 days after replacement and they had to do it again), but they've brought my bilirubin level down from 15+ to 0.3. I'm back to a normal color skin tone (for me) and eyeballs. The dreadful itching is gone.  We're leaving the external drains at this point, rather than put in metal stints internally because there is some chance they could come out completely after radiation. I long for the day I can take a long, hot and deep bath or swim again. I hate that these tubes make those impossible.

I started chemo in November, right after my last post. Sounds like my gemcitibine/cisplatin regime is the pretty standard line of first attack. I'll finish my 4th round on Friday. I'm on a 2 weeks on, one week off schedule.  Baylor goes out of its way to make it as pleasant as possible.

I did my first post diagnosis MRI/CT two weeks ago. My oncologist said 'scan is the best we could hope for' because this blasted tumor is so hard to see on the scans. He says he is convinced the chemo is working well, though, because my blood work looks good and because all the little bile ducts within the liver look great, when they were all so inflamed on the initial MRI.

I've tolerated the chemo pretty well. I get tired and that seems to peak about day 3-4. I've had some nausea, but not bad. I haven't had a huge appetite, but that's improving. I'm slowly putting on some lbs - I lost 20 to start when I had the gastroj surgery in October. I've gained back about 8.

So, my oncologist presented me with the 'bold' plan - instead of finishing the full 8 rounds of chemo, move to IMRT now and see what we can nuke. I met with the radiation oncologist last week.  The radiation guy has challenged me to try to gain at least 5 lbs before we start.  I'm in on it, although I don't love the idea of radiating my abdomen, but it seems my best odds to kill this off. While no one is saying never on resection, 3 opinions are that it is highly unlikely.  I have my 'mapping' appointment set after my next chemo break. One of my friends thought I had a 'napping' appointment and was jealous. I'll do some type of reduced chemo while doing IMRT. Will know more about that Friday.  My radiation guy said the gemcitibine really reacts with the radiation, so don't know if we will change drugs, reduce dosage or what.

So, that's my update in a nutshell. I did start a caringbridge page and write there a lot more. I have a great group of supporters. I think that's key. I really struggled early on with reconciling my image of myself as healthy and fit and active with my new reality as a cancer patient.  While it was hard to admit, I was thinking the worst and mentally making a list of who gets what of my possessions. Now, I'm trying to reset my mind to having, as someone put it, a long term chronic condition and going about living with it. To that end, I'm signing up to ride my bike around Lake Tahoe in September. It's a fundraiser for JDRF and it will my 3rd one. I started doing them after my brother died, at 48, of complications from diabetes. It gives me a target to shoot for and stay fit. Climbing the hills at Tahoe on your bike is no joke. I did it in 2012 and did a 100k in Nashville last year (in fact, two weeks before I was diagnosed). I have lost a lot of fitness since October, so this will be a challenge.

I'll try to be a better (i.e., more active) forum member going forward. You guys make me think, nod my head in agreement, shake my head in frustration at how unfair this cancer is, laugh and cry.


LisaS

Impatient patient.

Re: On the whole, I've had better weeks

Dear Lisa, thank you so much for the newsy update. To me the important thing is the Doctors are giving you options and options are good. I think we all think of 'lists' now and then, I have. I decided to give all the important things away while I can, I sure don't need them anymore and it does my heart good to see the kids use my things. I remember giving my only Granddaughter a little gold star that Teddy had given me. It was special as it came from her Papa. She was  13 and at 21 has never taken it off. Well, once I told her I would clean it for her! I love your attitude and that will get you far and I wish you the very best on what ever treatment is decided on as a next step. Good to hear from you, Lisa!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: On the whole, I've had better weeks

Well, I've turned my profile picture purple for World Cancer Awareness day today on Facebook and my cover photo to the CC Foundation page for the month.  Let's make some noise and get some attention to this bloody beast of a cancer.

https://www.facebook.com/lisa.stegall

Impatient patient.

43 (edited by marions Tue, 04 Feb 2014 17:38:15)

Re: On the whole, I've had better weeks

Thanks, so much Lisa.  You presented a powerful message.  Lisa, I also wanted to mention that you may post the link to your caring bridge site in this thread:
http://www.cholangiocarcinoma.org/punbb … .php?id=31

Thanks for considering and
hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: On the whole, I've had better weeks

Thanks Marion, just added them to that thread.

Impatient patient.

Re: On the whole, I've had better weeks

A great, big thank you coming right back at you.

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: On the whole, I've had better weeks

Well, I have not been taken to a witness protection program or anything, but I've been pretty quiet here since early February. I've spent more days in-patient at Baylor hospital this month than I've been home. I've written about my 'misadventures' more on my caringbridge page if anyone wants to be entertained. 

Suffice to say, I have a love/hate relationship with my biliary drain tubes. Can't live with them and can't live without 'em. It's been an interesting month. I am hoping to get cut loose today and go home. If I can remember how to get there. :-)

Lisa

Impatient patient.

Re: On the whole, I've had better weeks

Lisa,

Checked out your situation on Caringbridge.  Sounds like you have had a heck of a month.  I too am hoping things are now on the upswing and you can go home soon.  Take care.

Love & Hugs,
Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: On the whole, I've had better weeks

What not to say to someone you haven't seen in awhile:

Oh, I thought you died. 





Seriously, I ran into my across-the-street neighbor this week (we normally keep very different hours and don't see him all that frequently anyway). He did not know I have cancer, but that's what he told me. And, he apparently told other neighbors I had died.


I was ... speechless.


Other than that, I have 7 days of IMRT left (out of 30). My oncologist says next week is my last week of cisplatin/5FU (since I only have 2 days of radiation that following week).

I guess I have to wait about 4 weeks for scans after this to let the inflammation go down. I don't know what to do with myself without daily/weekly doctors appointments. I don't think I've had a week since October without some medical issue.

What to do after the scans is the big question. 

Lisa

Impatient patient.

Re: On the whole, I've had better weeks

LisaS, OMG! He said that to you?? Never heard of such an ignorant remark! BUT, I would have said yes, I really am not here, I am just around haunting you!
Good luck on the Scans and I know the wait can be hard. Wish I was there we could go to lunch and a chick flick! I am not a shopper. But I understand as I see 5 Docs and a week without an appointment does not seem right and anyway they are so cute! Young but cute. Congrats on just 7 more zaps!~

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: On the whole, I've had better weeks

Lisa,   

I am so sorry you had to put up with that ignorant neighbor's insensitive comments.  People need to learn to think before they open their mouth.  Good luck with the scans.  Fingers crossed.

Love & Hugs,
Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.