Hi clkempf:

I think there are a couple of things going on here.  One, yay for the tumor markers!  I'd be estatic over that, but that's because mine always go down when treatment is working.  Your miles may vary, but for me, that's cool news.

As for the rising alk phos level, when your doc gave you the numbers, did he/she not go over what they meant and if it was cause for alarm?  Your doctor should clear all that up for you, and if you get labs that you are concerned with, don't hesitate to have the onc clear them up before you leave the office - that feeling of just not knowing what is going on is awful.

What I picked up on immediately was the end of your post, indicating your frustration with the "ups and downs" of this disease.  I understand how you feel and wish there was an answer for you on that one.  Because CC is tricky, and treats everyone and every treatment a bit differently, it's so so hard to predict what will happen.  Rejoice in the fact that you've made it so far past your prognosis.  It'll take a while to "get used" to the disease, and understand that there's more than just beating or succombing to cancer.  We're living with cancer.  It's just a part of our life, and we deal with it. You're not doing anything right or wrong.  Have you a strong support system to help you through these times - or even a therapist or social worker that you can speak to?  It's good to get these feelings out!

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(13 replies, posted in Introductions!)

Hi Chris:

Welcome!  While it certainly stinks that scans show that your cancer is back, you actually had some good news in your post, if you can believe that.  You went from Stage IV (unresectable) to a resectable position, which is awesome.  That should give hope to a lot of people who think that Stage IV is something of a death sentance.  I was diagnosed at Stage IV in November 2009 and have been on chemo ever since.  I have been working towards that "resectable" goal, and I'm hoping I'm on the road to it, if my latest chemo is doing as well as it seems to be. 

I'm on irinotecan (CPT-11) as well as Xeloda, commonly known as XOLIRI.  It's just like your current regime, but instead of 5-FU (which turns out I'm allergic to), I'm getting the pill form of the drug called Xeloda.  So far, it's kickin butt, and I hope it does the same for you!

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(14 replies, posted in General Discussion)

Rick:

I so understand your feelings.  We've lost quite a few of us recently, and it's hard sometimes to be optimistic when you're looking at something like that.  Every time I come here and see someone has passed it makes me fearful, whether that fear is founded or not.  You're such an admirable spirit and I'm always impressed with your views on what's a priority. 

I couldn't agree more with everyone here that says this disease treats everyone differently.  That's why it's so darn hard to figure out what's going on with an individual.  We compare ourselves to other cases, but it never seems to match up.  I'm choosing to be optimistic for you.  I'm always stoked to see tumor markers go down, especially by half, like yours have.  To me, that's enough to buoy my faith a bit.  I'm going to hold on to your tumor markers and pray that they're indicative of some successful chemo, and that everything else are just some transient symptoms we have to deal with and just move on.

God is with you, friend.

WONDERFUL!!  That's tremendous news!!

Get after it, sister!  Gem/cis made me pork up - I think I gained something like 30 lbs because of all the steroids.  The great news is that once you're off, you'll start to lose that weight again. 

You know, it's interesting to me how different oncologists regard their role with a patient.  My oncologist told me from the beginning that he is my ONLY doctor.  I see him for anything, whether it's for chemo or a runny nose.  It works for me, especially since I don't have to worry about reporting stuff to two different doctors and making sure something doesn't interact with something else because one doctor doesn't know I'm taking something.  I'm glad your boob is better - it stinks when over and above all the other chemo related stuff you have to deal with, you end up with something like cellulitis.

Here's a link to the original:  http://cholangiocarcinoma.org/punbb/vie … hp?id=5532

I just got back from my oncologist's office for my mid-cycle check-up.  My tumor markers that were taken last week at the beginning of cycle 3 of FOLFIRI were....

....wait for it....

30.5

That, folks, would be within the "normal" range.  I've NEVER been in the normal range.  The closest I came was a year ago when I was halfway through GemCis and the PET showed that it had killed 70% of my cancer, and it was 45. 

Up yours, cancer.

I've started and stopped a couple of posts today.  I'm not sure if what I needed to say would be helped by journaling to myself or if it would help if i just get it over with and post it for all to see.  I've tried making it short and sweet, and writing something more detailed so everyone understands my thought process and doesn't think I'm just some crazy person (well, that part might actually be true).  I'm just gonna post.  Whatever flows from these fingers is how I feel, good or bad.

I'm usually such a positive person, so bear with me for a moment...I'm mad.  I'm freaking mad right now and I'll tell you why.  Cancer, you suck.  You've been such a turd lately, taking us or our loved ones with what seems like startling frequency this last month or so.  What gives?  Can you cut us a freaking break already?  Why?  Why Kris, why Linda, why Teddy??  Why Kristin?  It makes me want to live even harder (like I needed an excuse) just so I can give you the big middle finger.  Why do you have to be so vicious that even those who are looking at a potential cure because of a successful resection feel like they're always looking over their shoulders?  Can you just go away already?

*Big deep cleansing breath*

Ok, thanks to those that pulled up Kris' flower post.  I love seeing the other side of people, and while I couldn't keep an aloe plant alive if my life depended on it, it makes me feel nice and warm and fuzzy to know that we all are more than this disease.  It is part of us, but ISN't ALL OF US.

Thanks to Lainy for her post on a Teddylicious Christmas.  It helps to remind me to thank God for letting our loved ones surprise us with their presence, sometimes when we need it most.  I love that Teddy is associated with light - it just seems so right.  One day, I want my loved ones to smell a cake baking and feel that I'm there.

Thanks to Mary for posting about her husband, who's the "rare bird" of successfully fighting this monster a different way.  I too am not eligible for resection, but since I'm having such a great run with my chemo, it helps to motivate me seeing someone else with success that didn't come from surgery.  You gave me a boost of hope today, and it was just from passing along your husband's experience. 

Ok, I'm done and I feel better now.  Send the shrink bill to my house....I'll pay you in cookies.

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(134 replies, posted in General Discussion)

Oh, no.  I've never seen such a fighter as Kris. I had terrible insomnia last night so I truly believe she was surrounded by friendly souls. My deepest condolences to her husband, family, and cats.

Hi Suzanne:

I'm on irinotecan (CPT-11) as well....just finished my second cycle and head back in for my next dose on 1/4.  Originally it was combined with 5-FU, but at my last treatment it looked like I was having an allergic reaction, so we'll try it with Xeloda and see if the pill form is something my body will tolerate.

I, too, appear to be having success so far.  After the first treatment, my CA19-9 went from 90 to 68 and I'll know next week if that trend continues.  I can't stand the side effects, but that's just stuff we deal with when we think about the alternative.  Here's to us continuing to kick cancer in the rear!

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(6 replies, posted in Nutrition)

Hi there -

My smoothie is similar to Susan's; I don't necessarily use it to keep up weight, but I frequently drink it in the morning just because it's darn good for you.  I use frozen mixed berries, plain yogurt (I'd opt for full-fat plain yogurt in your mother's case), a great big handful of packed raw baby spinach, and Naked Juice's Blue Machine.  Feel free to sub milk or any gentle (non-acidic) juice in place.  The fruit and juice totally mask the spinach and you get plenty of protein, calories, and amazing nutrition all in one glass. 

Also, advise having a serious discussion with oncologist about how to keep that nausea in check.  Good luck!!

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(54 replies, posted in In Remembrance)

Ah, Lainy:

While I'm so saddened to hear of Teddy's passing, I'm relieved to know that he's no longer in pain and is at peace.  Your love story and how you both viewed this journey invokes an emotion in me that I can't even put into words.  You're an amazing lady and Teddy was truly blessed to have such a strong partner. 

My prayers are with you and your family as you embark on this next phase.  Teddy's looking down at all of you with a smile and the knowledge that he'll see you again....

Harmony

Hi jcouvillion:

I'm also in Austin - if I may ask, who is treating your MIL?  Understanding exactly what is going on is so important when talking to the doctors.  If you or your MIL do not understand, you have every right to probe further and have them explain in detail what is going on. 

What chemo is she on?

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(7 replies, posted in Introductions!)

Hi Kat:

Welcome to the forum.  There are a number of ways your brother in law can connect to other individuals in treatment.  He can always post here and receive a wealth of support from others, or he can contact an organization like Imerman Angels which will put him in contact with another patient with the same disease.

Hi Ashley:

I too am a stage 4 survivor.  Guess what - your mom is a survivor too.  My oncologist's office has always said that every day you wake up you're a survivor, no matter where you are in treatment.  I was diagnosed in Sept 2009 and am still here.  My cc is in the liver (1 tumor) and some lymph node involvement.  While cc is unpredictable, your mom's response sounds a lot like mine, in that every chemo I've tried has had some pretty impressive response.  I've been on gem/cis, FOLFOX and will be now switching over to FOLFIRI for awhile, mostly because the chemos have demolished my platelets and my body needs a bit of a break. 

I know this might sound like such a cliche, but truly, your mom could get hit by a truck tomorrow and the cancer wouldn't have made a difference.  That's how I live my life.  I'm doing great even with the chemo, but I could fall down my stairs tomorrow and break my neck.  Life is just unpredictable that way.  What's important is no matter if your mom has cancer or not, both of you live life to the fullest.  There are so many potential treatments for cc and new combos and medicines are being evaluated all the time, so people are living longer with this disease.  Forget the statistics - not only are they from years ago, but they don't take into account the individual.

We don't have an expiration date on the bottom of our feet, so love as much as you can for every day you can.  Please stay in touch with the "club;" we're a great support group and this board is a WEALTH of information.

I found the same study last week and thought...."yeah, I'll take two of those, thanks."  I've printed it out and am bringing it to the onc after Thanksgiving, when I start my new cocktail.  That's some stunningly great news; I think "encouraging" would be an understatement.  Brief resesarch showed no super huge side effects, so I say, load me up.

Has anyone had chemo and then waited to see if a mosquito feasted on you, flew a foot or two, and then just fell right out of the sky, poisoned to death?

No, just me??

Woah, well I've been a very bad girl, I guess.  There are too many things on that list that I haven't obeyed.  Like 70%.  Never eat raw cookie dough?  How is that humanly possible? 

On the same, but kind of different vein, had a discussion with my boss the other day and we were both wondering how with all the chemo I've had pumped into me (which should decrease your immunity to stuff), I've been less sick (read:  not at all) since I started??  No colds, nothing.  How does this happen?

Hi Margaret:

Me chiming in on this one serves really no purpose but to make me feel like at last!!  I have a formerly-useless nugget of information that I can offload.  I have no idea why I can remember this one, but pear juice (and apple juice) work because of the high sugar concentration.  When you digest it, the sugar in the juice cause your intestines to draw and absorb water from your system, thereby relieving constipation.  Many thanks to my son's pediatrician for giving me the low-down on this 4 years ago when he was a wee baby.

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(21 replies, posted in General Discussion)

Kris,

I wish I had words of wisdom for you now.  You've done this long enough that you are able to make your own best decision, and I know you'll do it again this time.  Sending you strength, peace and continued prayers for healing....

Harmony

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(9 replies, posted in Introductions!)

Hi vwallis:

As a mother to a young child and was diagnosed last year with CC, let me say I understand your sister's will to fight.  I'm sorry that she's faced with this disease and has heard such frightening news from her oncologist.  Feel free to visit as often as you need to so that you can obtain support and vent your frustration.  Your sister is so blessed that you care so very much for her and her children.

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(27 replies, posted in General Discussion)

I'm so sorry for your loss.  Take comfort in the fact that your husband is no longer suffering from this disease and that he surely passed knowing just how much he was loved.  I'll say a prayer for both him and your family to help you through this difficult time.

22

(23 replies, posted in General Discussion)

Oh, Kris.  Hugs to you girl.  We're all cheering you on, hoping that things get better for you.  Prayers and wishes for healing on the way to your room.

23

(37 replies, posted in General Discussion)

Hi Kris:

Praying for a positive outcome for the new surgery - sounds like you haven't exhausted that bag of tricks just yet!  Healing thoughts to you and your family.....

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(14 replies, posted in General Discussion)

Valjee wrote:

Hi Harmony!

Great stuff & thanks for the hug, it even reached across the pond to the UK!  Marvellous.

I've been reading your blog - I think I'd like to come and live near you for a short while - your food sounds really good! I'd be a very happy recipient of your 'feed friends' strategy.
I may have questions soon on translations of what certain foods - have you heard the saying that England (& the rest of the UK) & the U.S. are countries separated by a common language? Yes indeed! White beans?

Keep going as you are & watch out for runaway garbage trucks!

Take care, Val x

Hi Val!  I'm part Cajun, part German, and I sometimes pull from my Cajun comfort foods when I feed my family.  I make gumbo, etoufee, and white beans and rice (at least those are the savory dishes I make).  My Maw Maw (grandmother) used to make homemade pralines and divinity (yummy candy), and I'm working on those recipes since she passed on 2 years ago.  So hard to perfect recipes she spent her life making over and over again.

White beans (at least on this side of the pond) are another word for navy beans, little bitty white beans which are stewed down with onion, garlic, red pepper flakes, fresh thyme and usually some sort of pork product - my fave is smoked ham hocks.  We serve it over rice with cayenne pepper sauce.  Yum.  Visitors always welcome - I love to cook!!!

25

(16 replies, posted in General Discussion)

Oh hon, I had the same type of thing, but still don't know which of my meds caused it, because they were all eliminated around the same time.  I had some weird and creepy dreams, like my cat turned into a demon and tried to attack me in my sleep.  This all happened together with the "jerks" that we spoke of previously, so it was really hard to get restful, peaceful sleep.

I'm not a doctor, and I don't play one on TV, but has hospice mentioned combining an anti-anxiety med with the morphine to cut back on that stuff?  I hate that Teddy isn't having good sleep when he really needs it.