26 (edited by Pamela Thu, 26 Jan 2012 21:15:39)

Re: What Chemo should be used for me?

I am so happy you are doing so well Derin. The only real trouble that my daughter has is that her platelets go too low. Everything else is always fine. They have adjusted her Cisplatin a little lower, but she still gets the other two chemos full blast. She was unable to have chemo this week because platelets were too low. Her numbers are all over the place On day they are 79. Next week they will probably be in the 300's. That is what happened the one other time she could not have chemo. Good luck to you with the Gem/Cis combo. I will be watching for how you are doing.

-Pam

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

Re: What Chemo should be used for me?

hi derin,
my sisters case is very similar to yours. she had her second surgery in december and they have prescribed  gem/oxiliplatin. i see lainy mentioned me to you on this post. i would really appreciate if you could tell me dr javle's email. i found him on the internet and on md andersons website but not his email address. my sister was given radiation and gemzar after her first surgery. unfortunately the tumors came back and now they want to try gemzar and oxiliplatin. she goes to university of pennsylvania cancer center for treatment but we are looking for second or third opininons. i wish you all the best with your treatment. do you know if they got a good margin in your surgery. my sisters original tumor was very close to the main vein so they couldnt get a clean margin and they believe that is why it came back. take care!

Re: What Chemo should be used for me?

Darin,

Hi, I'm sorry I think I missed your post.  I had a resection with clean margins in May and I received 3 cycles of Gem/Cis, 2wks on, 1 wk off, 6 wks of chemo radiation with Xeloda, and then 3 more cycles of Gem/Cis.
So, I did receive both chemo and radiation after resection, just as it appears Dr Javle has recommended for you.
I had a large intrahepatic tumor and had my left lobe removed.  One of my margins was close at 2mm.
My latest scan showed questionable recurrence vs changes from radiation.
As others have mentioned, adjuvant therapy is debated and different facilities will give you different answers.
I decided to do it all because I am 32 and was otherwise healthy.
I handle chemo very well but radiation was very hard on me towards the end.  However, I did get better 2 wks after it ended.
I worked full time during this, just taking days off for chemo and leaving a little early for radiation.  Granted, I work from home, so that obviously helps.  I did have to take a few sick days towards the end of radiation.
It is a hard decision and I wish you the best of luck.
One of the things that drives me nuts about this cancer is there is not a definitive standard of care so it appears the patient ends up deciding a lot about their treatment plan.
Since when am I qualified to treat cancer???

Best wishes!

Susie

Re: What Chemo should be used for me?

Sallypa,
I am pretty sure I got Dr. Javle's email off of his web site at MD Anderson but in any event it is mjavle@mdanderson.org. I was very precise in my synopsis of my situation and to the point, which I believe he appreciated. The more to the point I think the better your chances of getting a response. Good luck!

Susie,
Was your tumor(s) located in the liver itself? Mine was not, it was in the bile duct only, didn't spread or metastasize anywhere and I believe I had at least 7mm of clean margins everywhere.  What does 'questionable recurrence' mean, that they can't tell if something is coming back because of the radiation changes? I'm with you, 40 (41 in April) and doing everything possible so bring on the chemo.  I'm also able to work from home now, one trip to Houston Monday and I will probably also be travelling my 'off' week (the week after my Friday blood test with no chemo). I return Thursday to hit chemo Friday.

Pam,
My bloodwork showed the following after 1 dose of chemo:
WBC 4.4 (6.3 the previous Friday)
Hgb 14.0 (14.6)
HCT 42.7 (44.9)
Plat 201 (142)
ANC 2.1 (3.6)

I'm curious to see how much lower everything is tomorrow.  And I'm still not changing anything so far exercise wise at this point. 1-1.5 hrs at the gym Mon, Tue, Wed with weights, cardio each day, and then cardio Thurs prior to chemo and so far so good. Maybe it helps, who knows!

Derin

Husband to Eileen, Dad to Hunter (15) and Sydney (13)
Attitude is everything, you have to keep it positive! And take it one day at a time, it's all anyone can do with this disease...

Re: What Chemo should be used for me?

Hi, Susie,

May be it is time to get a 2nd opinion for  radiation oncology  consult to look into radioembolization or chemoembolization if there is no metastasis.

As you may know the recurrence of intrahepatic CCA is very high. Only a few can be so lucky not to have faced recurrence again.
God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: What Chemo should be used for me?

Yes, my tumor was intrahepatic, all in the liver. What I mean by questionable recurrence on my scan is there were a few spots on my liver that reacted differently to the ct dye.  They are small areas, measured in millimeters, per my oncologist too small to biopsy and too small to show up on a PET scan.  My oncologist believes they are changes to my liver caused by radiation.  My radiation oncologist does not believe they are post radiation changes, but won't come out and say they are cancer.  (I told him he is like a politician, won't take a firm stand on the issues at hand.  We all laughed at this). Chances are they are cancer but I'm already getting chemo, Gem/Cis.  This chemo is still part of my adjuvant chemo post resection. I get another scan after I finish chemo, end of February, to see what is going on.  I don't feel the need for another opinion yet because I am already getting the standard Gem/Cis.  3 more doses to go. If there are multiple spots of recurrence in my liver, I wouldn't be a surgical candidate and I'm not sure I would go down the radiation road again. That doesn't mean I regret doing the original radiation.  And I don't mean to discourage others from doing it.  Everyone is different, with different responses and side effects. I'm going to see what happens after the Gem/Cis completes and go from there.  I'm not sure where exactly I will be going, but that is the plan.

I'm glad chemo is going well for you so far, Derin.  My only side effect from the chemo is low white cells and I get neupogen for that. I think it's great they got clean margins on your surgery.  I hope you continue to do well with chemo.

Take care!
Susie

Re: What Chemo should be used for me?

Hi Derin,

Just thought I'd chime in here. My sister (31 at the time) also had extrahepatic CC located on the common bile duct (diagnosed Sep 09). She had a Whipple done (removed gallbladder, ~12" duodenum, head of pancreas, bile duct) and had clean margins but 2/37 lymph nodes affected.

She did 8 cycles of Gemzar/Xeloda (2 weeks on, 1 off) and tolerated it well. I think cycle 5 or 6 got her where she hit critical saturation and vomited almost immediately upon finishing chemo (so keep a lookout for the cumulative effect). No radiation at the time because her oncologist said there wasn't really something to direct the radiation at (much like you pondered in a previous post).

She had clean scans until Sep 2011 when they found a necrotic lymph node and a recurrence of CC in the node. She's since done 5 treatments of SBRT and has just started a chemo regimin of FOLFIRINOX.

To give my 2 cents? I say do as much adjuvant chemo as you can tolerate. You had no nodal involvement and a small tumor by comparison (I think my sister's was 5cmx2cmx1cm) but this cancer is crazy. Write your name on the lawn, set it on fire and cry about why you don't love it crazy.

I'm linking this 2007 case study where a 60s Japanese woman had curative surgery on her extrahepatic CC (no nodal involvement) and then had it come back in a lymph node nowhere near her original tumor location. Just to point out how crazy this cancer is. Punch you in the face, steal your lunch money and then shocked that you don't like it crazy.

As far as radiation? I don't know what to do about that. In retrospect, I suppose my sister should have done radiation? I really have no idea, but the radiation oncologist mentioned recently that they don't like to do radiation to a site that's already received it. I also don't know if that's true or not but I'm simply passing that information along. If it was true I guess it's a question of keeping a bullet in the chamber?

I'm also including her bloodwork from the 09 chemo so you have some frame of reference:
Before chemo:
WBC 9.5
Hgb 11.4
HCT 35.5
Plat 340
ANC <I don't see this on her old bloodwork sheet

After 1 dose:
WBC 5.3
Hgb 11.5
HCT 36.2
Plat 329

Before final dose:
WBC 3.3
Hgb 11.2
HCT 35.9
Plat 348

WBC and Plat fluctuated pretty widely treatment to treatment. Hope this info helps!

+andrew

Re: What Chemo should be used for me?

hi derin,
thank you so much for the email addrress and advice to contact dr javli.
my best wishes to you.

Re: What Chemo should be used for me?

Hi Derin, Sounds like you and your doc are doing a terrific job! We have some long term success stories on this board with situations like yours - they will probably pop in. Just a suggestion - my husband had naturopathic support throughout his chemo and radiation. His GP was amazed at how well he tolerated the chemo and radiation. I am convinced his naturopathic support helped boost his immune system and energy. All the best to you. Nancy

Loving my husband from afar.

Re: What Chemo should be used for me?

Just got home from bloodwork. Slightly lower across the board, but should be fine by next Friday for Gem/Cis:

WBC    2.5 (4.4 last Friday)
Hgb     13.2 (14.0)
HCT     40.2 (42.7)
Plat     108 (142)
ANC    0.9 (2.1)

Derin

Husband to Eileen, Dad to Hunter (15) and Sydney (13)
Attitude is everything, you have to keep it positive! And take it one day at a time, it's all anyone can do with this disease...

Re: What Chemo should be used for me?

Darin: Great news! I'm happy to hear you have no effects from Gemzar. My main effect was a little tiredness the next day.
I was wondering if you wanted to come up to PA to wash my car???  big_smile
Good luck next week with the Gem/Cis. I'm interested in how you handle it as that might be my option after my resection.

Kris

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: What Chemo should be used for me?

Sorry Kris, I'm a Florida boy, too cold up there for me to handle...  cool

Derin

Husband to Eileen, Dad to Hunter (15) and Sydney (13)
Attitude is everything, you have to keep it positive! And take it one day at a time, it's all anyone can do with this disease...

Re: What Chemo should be used for me?

Sorry Derin, for the typo on your name. Sometimes I type too fast and don't proofread. I'm usually better at that, having an "alternative" spelling myself! And it's 60 degrees today!  cool

Sallypa: did you check with Cooper Medical Center? They've been advertising about how they treat bile duct cancer (guess they don't want to spell cc out). Or NY Presbyterian in NYC? Jim Wilde is a strong proponent of Dr. Kato there (surgeon) and might chime in on that. I'm sorry Sloane Kettering was so difficult with you. I can't believe they wouldn't help you. Good luck with MD Anderson or wherever you end up getting a second opinion.

Kris

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: What Chemo should be used for me?

I decided to try to keep the same 'schedule' after chemo so I fished again on Sunday and only washed one car the weekend before last... This past weekend, we took it up a notch and had fun with a chain saw trimming trees for 4 hours. Huge pile of debris when we were done too. And we cleaned out the gutters.  My wife seems to think that I'll be a bucket of mush after the Gem/Cis this week, so we've had the honey do list generated and I've been picking off things as best I can!

Make a note to yourselves, if you ever operate a chain saw, don't  let any part of your body touch the exhaust portion of it... Freakin' hot... I have 3 blisters on my pinkey, ring, and middle finger of the left hand to show for it!

Anyway, I'm still hitting the gym, doing light cardio, actually tried a few ab exercises for the first time last night since the surgery. Still sore a bit, but I'm repeatedly told that it will take time for that to heal so I can deal with it!

We have no plans for this weekend, only Synagogue if I'm up to it Friday night after the Gem/Cis. We shall see.... wish me luck, and thanks to everyone for the comments!!

Derin

Husband to Eileen, Dad to Hunter (15) and Sydney (13)
Attitude is everything, you have to keep it positive! And take it one day at a time, it's all anyone can do with this disease...

40 (edited by Pamela Tue, 31 Jan 2012 21:16:21)

Re: What Chemo should be used for me?

Derin-

You put most normal men to shame. I don't mean you are abnormal. Just that you are a member of the elite CC club. I hope your energy keeps up. Sounds like you are doing great. That's what we like to hear around here. Take care.

-Pam

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

Re: What Chemo should be used for me?

Derin,

I'm so happy you are doing so well!
I don't mean to sound like your mother here, but be careful getting sores on your hands.  As I'm sure you've been told, chemo can make your white count go low, so you could get an infection and it can make your platelets go low which can decrease your clotting ability.  I'm no expert but I would think low platelets + chainsaw = something bad.
You are a trooper.   

Best wishes!
Susie

Re: What Chemo should be used for me?

Susie,
Yes, my wife was recently speaking with a fellow mom at the bus stop waiting to pick up our son. She had breast cancer and went thru the chemo routine and said that they really don't like it if you get cuts, sores, etc. I guess I'm going to have to stop climbing on the roof to cut down 12" sections of 14" diameter tree trunks that hang over the roof and catch them with my right hand as they fall to avoid damaging the roof while going through chemo... I'm using mupirocin and bandaids to hopefully heal them up. Got a bunch of little scrapes and cuts that I wouldn't normally think twice about but honestly never even considered the ramifications of being on chemo and the low white/platelet levels. Only bled from one or two of the scrapes, and it did stop bleeding so it can't be that bad, right?

Pam,
I like being a part of an elite club!! I'm crossing my fingers for this Friday and hope that I can at least make it to services Friday night and see what happens from there. I've read other stories of Gem/Cis and some tolerate it well, hoping I'm one of those. If I lose the hair, life goes on, I'm in no way vain and it will grow back. Besides, there's a crap load more grey in there right now compared to a few months ago too!!

Derin

Husband to Eileen, Dad to Hunter (15) and Sydney (13)
Attitude is everything, you have to keep it positive! And take it one day at a time, it's all anyone can do with this disease...

Re: What Chemo should be used for me?

Derin, you are totally amazing but you better be careful up on the roof! See, you have all these Mama's now on this site who want to take care of you! I hope you can go Friday night but either way on Friday I wish for you a Shabbat Shalom!

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: What Chemo should be used for me?

Well, I'm back in Sarasota. My cuts/scrapes are healing well, and the blisters are too. Not sure what the doctors will say tomorrow, hoping I can get on with it and start the Gem/Cis as planned. As I said in a post earlier, I didn't even think about my blood count levels, just did what I would normally do... I guess I have to start taking that into account from here on in while going through the chemo. Either that or be more careful and not touch hot things, one or the other, huh? Wish me luck for tomorrow!

Derin

Husband to Eileen, Dad to Hunter (15) and Sydney (13)
Attitude is everything, you have to keep it positive! And take it one day at a time, it's all anyone can do with this disease...

Re: What Chemo should be used for me?

Derin, many good wishes coming your way for tomorrow!

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: What Chemo should be used for me?

Good luck Derrin!! Take it easy with the handyman stuff for awhile. You deserve a rest. All the best to you and your family.

-Pam

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

Re: What Chemo should be used for me?

Good luck, Derin!  let us know how it goes.

Susie

Re: What Chemo should be used for me?

OK, this is ridiculous...  I can't  stop going to the bathroom!!! I just got the anti-nausea shot with the steriods and Gemzar is in, now I'm about done with the magnesium/potassium fluids and Cisplatin is about to start. Man, I literally went to the bathroom 6 minutes ago and it feels like I didn't even go.... At least I picked a seat near the bathroom. And  I think that shot of Lasix isn't helping things either.......

Derin

Husband to Eileen, Dad to Hunter (15) and Sydney (13)
Attitude is everything, you have to keep it positive! And take it one day at a time, it's all anyone can do with this disease...

Re: What Chemo should be used for me?

Derin, not funny but mention my name, maybe it will get you a better seat!!!!!!!!!!

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: What Chemo should be used for me?

I've got one of the better seats, closest to the bathroom and the massage/heat feature works too! Cisplatin done, not feeling any bad effects so far, and about 45 minutes to go with the 2nd dose of fluids and I'll be done for the day...

I have literally gone to the bathroom 5 times in the past hour. Couldn't wait more than 6-7 minutes between the first 2 times, then 15 minutes, then 20 and 20. Better make sure I go right before I get in the car or I will be stopping on the way home!!!!

Derin

Husband to Eileen, Dad to Hunter (15) and Sydney (13)
Attitude is everything, you have to keep it positive! And take it one day at a time, it's all anyone can do with this disease...