February 1, 2012 at 2:14 am #56280lainyParticipant
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!February 1, 2012 at 12:47 am #56279
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?
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!!February 1, 2012 at 12:19 am #56278wallsm1Participant
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.
SusieFebruary 1, 2012 at 12:11 am #56277pamelaParticipant
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.
-PamJanuary 31, 2012 at 10:24 pm #56276
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!!January 27, 2012 at 8:28 pm #56275kris00jParticipant
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.
KrisJanuary 27, 2012 at 8:12 pm #56274
Sorry Kris, I’m a Florida boy, too cold up there for me to handle… 😎January 27, 2012 at 8:11 pm #56273kris00jParticipant
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.
KrisJanuary 27, 2012 at 7:59 pm #56272
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)January 27, 2012 at 7:03 pm #56271nancy246Participant
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. NancyJanuary 27, 2012 at 1:50 pm #56270sallypaMember
thank you so much for the email addrress and advice to contact dr javli.
my best wishes to you.January 27, 2012 at 9:47 am #56269baroqueParticipant
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:
After 1 dose:
Before final dose:
WBC and Plat fluctuated pretty widely treatment to treatment. Hope this info helps!
+andrewJanuary 27, 2012 at 6:19 am #56268wallsm1Participant
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.
SusieJanuary 27, 2012 at 4:42 am #56267pcl1029Member
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.January 27, 2012 at 3:59 am #56266
I am pretty sure I got Dr. Javle’s email off of his web site at MD Anderson but in any event it is email@example.com. 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!
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.
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!
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