What Chemo should be used for me? (Page 2 of 3)

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

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.

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

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

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??? 
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

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! 

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

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

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!!

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!

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

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.......