January 27, 2012 at 1:14 am #56265wallsm1Participant
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???
SusieJanuary 27, 2012 at 12:30 am #56264sallypaMember
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!January 26, 2012 at 4:15 pm #56263pamelaParticipant
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.
-PamJanuary 26, 2012 at 2:52 pm #56262
Great news, Darin and it is wild you posted today. SallyPA is looking for an email to Dr. Javle. Keep up the good news, we love it!!!January 26, 2012 at 2:15 pm #56261
So far so good. With the Gemzar only, there doesn’t appear to be many side effects at all except for the ones you don’t really notice (lower red/white blood counts and platelets). I did the same thing as the previous weekend (fished, but only washed one car) and didn’t get as tired. This week has been fine also. Bloodwork only this Friday, then next Friday is the combo Gemzar/Cisplatin. I’m thinking that this combo will have more of an effect, so planning an easy weekend. Work trip to Houston next week, then long day Friday for the chemo!January 21, 2012 at 5:44 am #56260
Well…. Same as last week. Wired and can’t sleep after the Chemo session. Gonna try to go to bed soon, but have no tiredness in my body at this point! Didn’t have any issues at all today, no pain, no side effects, just can’t sleep!January 20, 2012 at 3:27 pm #56259
OK, Derin, you are now our Superman Poster boy! Keep up the fantastic work!! Have a great weekend.January 20, 2012 at 3:09 pm #56258pamelaParticipant
What a beast!! Go get ’em Derin.
-PamJanuary 20, 2012 at 2:21 pm #56257
OK, 2nd dose of Chemo today at 2:15. Gemzar has not given me any side effects whatsoever after the first dose. Did the gym M-Wed, ran last night (2 miles, 24 minutes, best cardio effort so far after the surgery) and will take it easy this weekend hoping to get back to the gym on Monday. That doesn’t mean we won’t get some shrimp and fish a bit though…January 18, 2012 at 3:35 pm #56256
Derin, you fished and washed 2 cars???? I couldn’t do all that on the best day and I am not in chemo!! You could have saved some energy by rolling the cars into the lake where you were fishing! LOL I am hoping for your immense good energy to continue!!January 18, 2012 at 1:42 pm #56255
Well, it’s Wednesday and no ill effects from the Chemo at all so far. Hit the gym Monday and Tuesday evenings also. Did some fishing on Sunday and when we got home I decided to wash 2 cars. I was a bit tired after that and took a nap, but other than that, no other issues! Friday is Gemzar again, then off one week, then we do combo Gemzar and Cisplatin. I hear that one is harder to tolerate, we shall see…January 14, 2012 at 7:31 pm #56254EliParticipant
You wrote:Quote:I’m a bit confused on the ‘radiation’ part as from what I understand it is typically targeted at a ‘tumor’ to shrink it. What will they aim my radiation at?
They will aim it at a “3D area” that surrounds the location of the tumor. The shape of the “3D area” is irregular. The area includes certain organs: the remaining bile ducts, part of the liver, the surrounding lymph nodes, possibly duodenum and small intestine, possibly the bottom part of the stomach (pylorus). They want to stay away from the organs that (a) are unlikely to harbor cancer cells and (b) are very sensitive to radiation. Spine being the most important one (radiation therapy carries a very small risk of spine injury).
Radiation is routinely used in resected cases that are deemed high risk. Positive margins or/and positive lymph nodes. You wrote that you have neither. So I’m not sure why they decided to give you radiation. You might want to ask them for a more detailed explanation.
EliJanuary 14, 2012 at 3:43 pm #56253
heheheh, even if they misfire and aim badly, I already took care of that. No more kids on the horizon for us!!January 14, 2012 at 2:33 pm #56252
Darin, I am so happy that you are doing so well with chemo and all. While I can’t help with that (Teddy never had chemo) I also can’t help saying what I am going to say. Are you ready? Here goes…..my sense of humor….YOU be VERY careful what they aim that Radiation at!!!!! Sorry, sometimes I just can’t help myself.January 14, 2012 at 5:43 am #56251
Eli, thanks for the info. I expect a 5-6 hour ordeal on the first day of Gem/Cis. Not sure if you’ve read my posts on my situation, but lucky for me, clean margins and no metastasis. Tumor was 1cm x 0.5cm x 0.7cm and contained only in the bile duct right at the bifurcation just as it enters the liver (from what I’ve read on this site, a very small tumor compared to others). No CC was present in the 7 lymph nodes they took out, nor was it present in the gall bladder or liver at all. My liver is about back to the size it was pre-surgery but grew on the left side of me, not over to the right. That’s the reason for Gemzar only initially. I technically have no ‘tumor’ to go after, only possible free floating cancer cells in blood or wherever they may be lurking. My oncologist consult from Sloan Kettering suggested Gemzar only followed by radiation. Local Sarasota doctor was a bit more aggressive and suggested Gemzar/Cisplatin and Dr. Javle from MD Anderson was also a proponent of Gemzar/Cisplatin followed by Radiation and oral Xeloda. My oncologist compromised with a cycle of Gem only, and then the Gem/Cis. We started with one cycle of 3 weeks for Gemzar only and then Gem/Cis combo for probably 6 – 3 week cycles, maybe 7 followed by the radiation and Xeloda.
I’m a bit confused on the ‘radiation’ part as from what I understand it is typically targeted at a ‘tumor’ to shrink it. What will they aim my radiation at? I have no original bile duct, it is my reconstructed small intestine. Just curious, and as usual, thanks for the comments everyone!!
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