Yeah, I'm not in the under 50 group either. But just barely. :-)

You know what?  You might be surprised at what she wants to talk about. Just spending time with her one on one and listening is important. Just as I was diagnosed with cc, a friend I grew up with found out she had stage 4 mesothelioma and conventional western medicine said they couldn't do anything for her.

We got together one Sunday afternoon and yes, there were some tears, but we had a great talk about both our situations and well, just life.

Hope you are feeling better, Lainy!

Julie, glad you are home.   Reading your post reminded me that while I didn't miss any chemo sessions once they started, both my initial chemo round and my later chemo/radiation got pushed back to start by several weeks because I had stupid infections/dehydration and was in the hospital. My oncologist wanted me to recover from those before I got started on the other, so I'm sure your new docs plan will be fine!  And, as kris said, the chemo keeps working after being administered, so you've got that going for you.

I think your chemo plan sounds good, given your other health concerns. You sure don't need to be sitting by the side of the road and feeling bad.  I'm all for liking and trusting your local oncologist. I just got lucky with who I got referred to first.

Enjoy getting your flowers planted. Happy birthday/Mother's Day.

I-yi-yi. I don't even know what to say. I used to think if it was some weird thing it would happen to me, but you know, we may be related that way.

I'm so sorry you are having all these complications. Sometimes I feel like I don't even feel sick from cancer, but complications.

I'd try another stab at taking to the nurse navigator. But, I'd also definitely understand if you switched where you are getting chemo. I will say I never saw my oncologist in the infusion room.  (doesn't that sound like some funky bar in NYC?  Where they infuse the air with something?  That was always what I thought.).  But then, I didn't ever experience any problems. I don't doubt they could/would have called him immediately and he would have hopped down the two floors to see me.

I had a few struggles with accessing my port early on and man, they are not fun. I hated them feeling around for my dots and I learned real fast I needed a 1" needle and only that would do, so I wasn't shy about speaking up.

They use a cold spray here, not a cream. I'm not sure it really makes a difference. Hang in there. Nowhere to go but up!!!!!

6

(75 replies, posted in Introductions!)

Olga,

I was 56 when I was diagnosed last October. My oncologist doesn't even pay attention to my ca-19-9 at this point, although mine has always been higher than normal. My alk-phos levels are higher than Norbert's and fluctuate a fair amount, which they can do during chemo and radiation.

I, too, was told no surgery, although I am stage IIIB. I did chemo and then chemo/radiation. I managed to get through them without major side effects, so I hope that is true for him. I didn't have the radiation embolization. Mine is extrahepatic and I think (maybe) that's more for intrahepatic.

Anyway, just to say that I've felt pretty good most of the time, which makes me want to fight like heck to hang around until there is some breakthrough treatment.

Thinking of you both.

Lisa

7

(17 replies, posted in In Remembrance)

I'm so very sorry for your loss Nancy.  I'm sure you are supported by family and friends around you now, but we're here when you need us.

Lisa


PS, I know you posted elsewhere that you husband said you should look for signs from him after he is gone.  I am sure you will get some.  I have had signs from my little brother several times after his very unexpected passing and they have given me a lot of comfort that he is okay.

I sent in my initial form earlier today and already had an email from the folks at the Mayo Clinic with the consent forms.  I'm very excited about participating. 

I have also forwarded the info to two friends who both lost parents to this dreadful disease and I hope that they will chose to submit records as well.  I think it's important.  And, I still shake my head that such a rare cancer can strike one of my best college friend's mother and a very close current work colleague's father, as well as me.  I didn't know that either one had CC - just that they lost their parents to cancer.  It was only when I told them my diagnosis that I learned of theirs.  I think it's time to talk about this in public a lot more. 

I was delighted to have several friends email/text/call me about Melinda's wonderful story about her NIH trial today.  They were all over the country and reading different papers, but they all saw "bile duct cancer" and immediately thought of me.

Damn Kris, I wish I had some great words of wisdom for you.  My appetite is still really poor too and my taste is off and my oncologist said it would take a few weeks.  And, I've had more nausea since finishing chemo and radiation than I did when I was doing the chemo and radiation, which I find strange.  It drives my husband crazy - he thinks I should just force myself to eat regardless of whether I'm going to throw it up or can't stand the smell of it and I just can't do it.

Yesterday, when I went in for my biliary tube exchange, they weighed me in front of him.  111.3.  Fully dressed.  Boy, did I get an earful about that.

So, I can relate in part, but I think Mark is having a much harder time with it all than me and I hate that for you both.  Did he get a feeding tube?  I seem to recall some discussion of that recently.  Maybe this is the time to put it to use or talk to his oncologist about it to get him over this hump? 

I'd be all over that medical marijuana to boost his appetite.  I was really never a pot smoker in college, but I think I wouldn't have any qualms about it as a patient.  Unfortunately, it's not legal in Texas, but I've had friends offer to get me some.  Why doesn't he want to try that?  He's lucky he lives somewhere he can get it.

My only experiences with super low BP were when I was getting septic from a bile drain tube infection that got into my blood stream.  But, if his numbers look okay and they've ruled out infection, I don't know what to tell ya.

Sending you both a virtual hug.

10

(2 replies, posted in Thought for the Day)

Amen, sister

I came back from a 100k charity bike ride in Nashville thinking I was in the best shape of my life. Went to a wedding the following weekend. My college roommate was there. She looked at me and said my eyes were yellow, which I hadn't even noticed. So, I called my internist that Monday and got in to see her. She agreed my eyes were yellow and sent me for blood work and to see if I could get in for a ct scan that day, which I did. The ct showed a mass of some sort and my blood work showed high bilirubin and other elevated liver numbers. My doctor called me at home that night (I really thought I'd just gotten some bad oysters or something when we were on vacation a month before). She got me in for every alphabet test under the sun that week - MRI, colonoscopy (I'd had a routine screening colonoscopy 6 months earlier that didn't show anything), endoscopy and ERCP. While they were not able to get a tissue sample to biopsy because of where my tumor was located, I knew the diagnosis - classic klatskin tumor - within 48 hours and my internist and the gastroenterologist pulled strings to get me in with my oncologist that week, as they both thought he was the best with this cancer.

In hindsight, I complained about the hotel food in Nashville, but I don't think it really was the food. I think it was the beginning of my symptoms and it turned out within a few weeks of diagnosis I had a major blockage abdominally that required a gastrojejunostomy surgery to re-route around the blockage.  I was itching, but had no idea what that meant. During the week I was undergoing all those tests, as my bilirubin number got crazy, I got really yellow and had the dark urine and light stools.

That's probably way more than you wanted to know. It frustrates me no end there isn't some screening or signs until its late in the game.

How are you doing?  You are in that just awful period of time where your world has stopped spinning, but the world around you goes on. It's surreal. I know.

A few exchanges ago, I had a moment when I stopped breathing with the anesthesia. That freaked them out. It freaked me out too, although I didn't know about it till later. So, now, they don't want to put me so far under.

Tube exchange today went well. The "team" knows me and I know them too. By name. I even recognized nancy, the charge nurse, by her haircut when she was standing with her back to the desk when I checked in.

I was handled very gently. I told them I felt every tug and pull last time, so this guy took his time and did it slowly. Yay. Had to stay 2 hours on bed rest before being sent home. Got home about 1:30. My husband had to go to the office, so my 84 year old mom and 89 year old dad came over to babysit me. I napped all afternoon and I am going to eat a bit of dinner and fall asleep in front of the Mavs/Spurs playoff game. I feel very sore. Just took two Tylenol, so hope that helps. If not, I've got something stronger I can take later.

I weighed in the morning at 111.3, fully dressed. I wish they had weighed me when they did the labs instead of bringing a scale to my room and doing it in front of my husband. Boy, did I get fussed at.

It does seem my taste buds are a little bit more normal today. Hope that means food will start tasting normal, because I really don't have any more to lose.

Lisa

This is really important info for everyone!  Taking off my lawyer hat, I speak from personal experience after losing a brother unexpectedly that everyone needs to think about planning for the inevitable. Whether it's this cancer or getting hit by a bus, everyone reaches the point of needing some or all of these documents and plans.

I'd also add that if you have specific wishes about what you want done after you die that you make it clearly known. I had a friend whose parents were killed in a plane crash years ago. They had lived all over, due to many corporate moves and the family was very divided over where they wanted to be buried. Caused a lot of disruption and upset at the time.

My husband had cataract surgery yesterday. He was such a happy camper afterwards. I don't know what they gave him, but I'd like some if that!

Mine have lasted anywhere from 3 days to eight weeks. My oncologist was hoping with the antibiotics and blood numbers looking good, I could stretch the average 4-5 weeks between exchanges a bit longer and get through my scans.

I just hate the fact I'll be awake during the procedure. I had a reaction to the anesthesia once and now I get about as much sedation as being at the dentist. Wait, I actually recall sedation at the dentist as even better (deeper) than this!

So much for the few weeks off from being poked and prodded. Finished a 7-day Rx of levoquen prescribed after I spiked a high fever the day before we left on our anniversary trip (also on augmentin on a more long term basis to prevent infection in these bile drain tubes that I have a love/hate relationship with). The day after finishing the levoquen, temp spikes to nearly 102 and nausea. Back on stronger dose of levoquen. Despite that Sunday night, fever spikes again over 101.7.  And more random nausea.

My oncologist was so hoping to get through till my scans without having to exchange the tubes (8th or 9th set since October). He thinks they may be able to come out.  I was just hoping to go a few weeks without needles. 

But, with these fevers every few days, I'm checking in tomorrow at 7 to get new tubes. Good timing. My left  one (it's always the left one) just sprung a leak. So, definitely what's causing the fevers. Crud.

I feel okay other than when running 101+.

Hi Steve,

I'm so glad they caught your fiancée's tumor while they could remove it. While I was 20 years older at diagnosis, I was also healthy and fit and it came as quite a shock. I expect that is true for a lot of people on this forum. I wasn't able to have mine operated on, so I can't offer any advice on surgery. I'm sure others will chime in who have had surgery.

It's a great support group here.

Best,  lisa

What good timing - I just popped on to check in. I didn't buy any ginger tea, although I'm sure I could find it here in Dallas. You might check these queasy pops out.

http://www.choosehope.com/product/queasy-drops-pops

I learned about them in my "chemo class" and the pharmacy @ Baylor carried them. They come in a variety of flavored, including ginger.

Also, just plain ginger snaps or ginger ale can help. I didn't find I needed it much. I bought a whole assortment of queasy pops and only used a few.

They should go over what all you will get with chemo with you. The nurses at Baylor were great - I hope your infusion nurses will be too. They took time to explain everything I was getting and showed me the labels on everything. You'll get fluids because the cisplatin is hard on kidneys.

Take reading materials or other stuff. I was gifted a new iPad, which was great to keep me occupied. Even HBO and Direct tv on demand. Or, don't hesitate to nap.

PS, ironically, I ran into the surgeon who put my port in this morning. My husband was having cataract surgery at the Baylor day surgicenter and Dr. Celinski came out to the waiting room. I was surprised to see him, but they apparently do all kinds of day surgeries there. We had a nice chat.

But, that reminds me of one more thing. I don't know about yours, but my port was kinda deep, so I learned real quickly to make sure every nurse I had knew what size needle worked!  Saved getting poked more than once.

20

(8 replies, posted in Introductions!)

Welcome to the group, although I'm sorry you had to find us. I hope you will find a lot of support here. One of the moderators, Lainy, has a list of signs to watch for. If you send her a private message (go to her profile page to do that), she will email it to you.

Is your brother in Texas too?  Where was he diagnosed?

I'm on my second dose of levaquen in a row, because I spiked a fever Friday night. Had just finished a 7-day Rx Thursday. I also have a 30 day Rx of amoxicillin from my infectious disease guy. I spiked a fever again this afternoon while out with our son and his family and had to come home. I may be on the verge of calling in after hours, but I hate to miss the hockey playoff game (it won't be on a channel at the hospital). But, if temp stays, I will call.


Lainy, I think I adore teddy.

Lainy, a weight-lifting penguin!!!  Thanks for the good laugh.  I have such a visual.

Julie, infection is (for me) a constant issue due to my biliary drain tubes. My oncologist brought in an infectious disease specialist to work with us. I've been on antibiotics since being in the hospital with a serious infection in February. Glad your oncologist was responsive. This cancer just plain sucks!!!!

24

(12 replies, posted in Good News / What's Working)

Fantastic!

25

(9 replies, posted in General Discussion)

I'm glad you got to spend time with him. I'm so sorry for your loss. I know you'll be on autopilot for a few days making arrangements. The best advice someone gave me after my little brother passed unexpectedly is that grief is a process, not an event. We are here for you.

Lisa