• From: Sarasota, FL
  • Registered: Wed, 28 Dec 2011
  • Posts: 183

Topic: What Chemo should be used for me?

Well, I have an appointment with my oncologist today at 1pm. We are discussing final decisions on my adjuvant therapy that starts on Friday the 13th. As of now, I believe they are only putting me on Gemzar but from what I can gather, the combination of Gemzar/Cisplatin is the 'standard of care' for CC.

My situation is a bit different in that there is no remaining tumor and the chemo is preventative to hope for a better chance of non-recurrence.

I actually sent an email to Dr. Javle at MD Anderson, gave him my history, and he also suggested a combination Gemcitabine/Cisplatin  for 3-4 months with 5.5 weeks of Radiation and oral Xeloda.  I am going to bring this up to my oncologist today but really have no clue as to what I should be doing.

Suggestions/comments?? Thanks in advance!

Derin

Husband to Eileen, Dad to Hunter (14) and Sydney (12)
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...
  • From: Phoenix AZ
  • Registered: Fri, 13 Jan 2006
  • Posts: 8,224

Re: What Chemo should be used for me?

Hi Derin, wow, this is a hard one. We really can't prescribe, just kind of give gentle suggestions. Gem/CIS is one of the top cocktails around here and Dr. Javle is one of the top guns, guess I would just tell your ONC what he said and ask him why he is doing only the Gemzar. You are way ahead of the game by being Cancer free and we LOVE that! Let us know the outcome on this as it helps everyone and we just like to know how you are doing.

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.
  • Registered: Fri, 12 May 2006
  • Posts: 8,174

Re: What Chemo should be used for me?

Darin….this is what I have learned. Given the aggressive nature and high recurrence rate of this disease we have witnessed, within the last few years, a noticeable shift toward post resection treatment however, a standard of treatment has not yet been established.  In the meantime you will see varied approaches brought forth within the medical community.

Numerous neo-adjuvant therapies (post resection) studies are conducted and others are in the process of development and approval however, it will take a few years before the true benefit can be determined. 

Is your local oncologist aware of the recommendations made by Dr. Javle?  If so then you might want to ask him to explain to you his reasoning for using Gemzar rather than the proposed MD Anderson treatment.  Is there a possibility for your oncologist to make phone contact with Dr. Javle?  Remember that the date of first chemo treatment can be held off until clarification has been achieved.

Be assured though that we have seen similar circumstances in where the treating physician’s approach differs from the recommendations of a high volume cancer center.  At the end is always works out.

Please, keep us posted.

All my best wishes,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER
  • From: Sarasota, FL
  • Registered: Wed, 28 Dec 2011
  • Posts: 183

Re: What Chemo should be used for me?

Met with the oncologist, Dr. Buck, and we're starting off with Gemzar only for a few weeks to see how I handle it. If I'm handling well, they will add the cisplatin. Not sure of the overall duration, and pretty sure radiation with chemo for a while after the chemo only is done too. Optimistic at this point, as long as I can hopefully continue to work out and it doesn't take too much out of me I'll be happy but can only really wait and see how I'll feel after the first dose. CT of upper chest Friday AM, then first chemo dose at 1pm on the 13th next week. We'll see!

Derin

Husband to Eileen, Dad to Hunter (14) and Sydney (12)
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...
  • From: Phoenix AZ
  • Registered: Fri, 13 Jan 2006
  • Posts: 8,224

Re: What Chemo should be used for me?

Derin, this is good news. A game plan! I am wishing you the best of luck. Your body will definitely let you know about the work outs! To do or not to do workouts. Everyone handles chemo differently and I hope you are one who does well. Please keep us posted.

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.
  • Registered: Fri, 12 May 2006
  • Posts: 8,174

Re: What Chemo should be used for me?

Derin...I would be surprised if you could not continue your workout.  You may have to re-arrange the schedule a bit, though. 
Good luck with your first treatment on the 13th. 
All my best wishes,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER
  • From: Sarasota, FL
  • Registered: Wed, 28 Dec 2011
  • Posts: 183

Re: What Chemo should be used for me?

Just had my chest CT for a baseline to compare to if anything else happens. Chemo at 1:30 today... We'll see how it goes!

Derin

Husband to Eileen, Dad to Hunter (14) and Sydney (12)
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...
  • From: Uniontown, Ohio
  • Registered: Fri, 23 Sep 2011
  • Posts: 1,489

Re: What Chemo should be used for me?

Derin,

Good luck with your chemo. Everyone reacts differently to it. My daughter is on three different ones and does remarkably well. Only a bit tired for a few days and then it's go, go, go. Hoping the same outcome for you. Take care.

-Pam

Hoping for a miracle for my daughter, Lauren.

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.

Pamela's Website

  • From: Eastern Shore of Maryland
  • Registered: Fri, 15 Oct 2010
  • Posts: 380

Re: What Chemo should be used for me?

Derin, one thing I've learned, is Gemzar or Gemzar+Cisplatin are the standard for adjuvant chemo following a resection, although many do nothing at all.  I had six months of Gemzar only, 2weeks one/one off, for six months right after a successful resection.  I was never a candidate for cisplatin (cardiac issues ruled it out).  All that said, there's no effectiveness guarantees with the chemo, just a hope that it improves your odds of staying clean.

Good luck with your treatment.

Jim
Hospitals/Doctors Link,  Our Experiences:  http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=3126  See page 4 of thread for Dr. Tomoaki Kato info.
Major USA Cancer Centers:  http://www.cholangiocarcinoma.org/majorcancercenters.htm
  • Registered: Fri, 12 May 2006
  • Posts: 8,174

Re: What Chemo should be used for me?

Erin...fingers are crossed on this end too.
All my best wishes,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER
  • From: Sarasota, FL
  • Registered: Wed, 28 Dec 2011
  • Posts: 183

Re: What Chemo should be used for me?

Gemzar went in with no problems. Finished around 3:30 today. They gave me Decadron 10 mg and Aloxi 250 mcg with 2000mg of Gemzar by IV. All of my bloodwork was normal and the CA19-9  marker was 34.7 which according to the ranges is normal and in the 'normal' range... So far, feeling fine, but we will see over the next couple of days. I have Zofran if nausea hits. 1 more session next Friday with Gemzar only, one week off, and the following they add Cisplatin with the Gemzar and I'm told this is a 5-6  hour process because of the hydration required with the Cisplatin. Thanks for the comments everyone!

Derin

Husband to Eileen, Dad to Hunter (14) and Sydney (12)
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...
  • Registered: Fri, 12 May 2006
  • Posts: 8,174

Re: What Chemo should be used for me?

Derin...great news.  Rest up and please keep us informed.
All my best wishes,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER
  • eli
  • eli
  • Legend
  • Offline
  • From: Ottawa, Ontario, Canada
  • Registered: Tue, 08 Nov 2011
  • Posts: 562

Re: What Chemo should be used for me?

Derin, my wife is on Gemcitabine/Cisplatin. We do spend about 5 hours in the hospital. We arrive 2 hours before our chemo appointment to do the blood test. Then we sit and wait. Chemo session itself lasts about 2.5 hours. 30 minutes premedication by Zofran/Decadron. 1 hour gemcitabine. 1 hour cisplatin.

Our oncologist is very cautious, but not as cautious as yours. My wife started on Gem/Cis right away.

Good luck,
Eli

  • From: Sarasota, FL
  • Registered: Wed, 28 Dec 2011
  • Posts: 183

Re: What Chemo should be used for me?

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!!

Derin

Husband to Eileen, Dad to Hunter (14) and Sydney (12)
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...
  • From: Phoenix AZ
  • Registered: Fri, 13 Jan 2006
  • Posts: 8,224

Re: What Chemo should be used for me?

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.

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.
  • From: Sarasota, FL
  • Registered: Wed, 28 Dec 2011
  • Posts: 183

Re: What Chemo should be used for me?

heheheh, even if they misfire and aim badly, I already took care of that. No more kids on the horizon for us!!

Derin

Husband to Eileen, Dad to Hunter (14) and Sydney (12)
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...

17 Reply by eli (edited by eli Sat, 14 Jan 2012 13:33:20)

  • eli
  • eli
  • Legend
  • Offline
  • From: Ottawa, Ontario, Canada
  • Registered: Tue, 08 Nov 2011
  • Posts: 562

Re: What Chemo should be used for me?

Hi Derin,

You wrote:

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.

Best wishes,
Eli

  • From: Sarasota, FL
  • Registered: Wed, 28 Dec 2011
  • Posts: 183

Re: What Chemo should be used for me?

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...

Derin

Husband to Eileen, Dad to Hunter (14) and Sydney (12)
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...
  • From: Phoenix AZ
  • Registered: Fri, 13 Jan 2006
  • Posts: 8,224

Re: What Chemo should be used for me?

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!!

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.
  • From: Sarasota, FL
  • Registered: Wed, 28 Dec 2011
  • Posts: 183

Re: What Chemo should be used for me?

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...

Derin

Husband to Eileen, Dad to Hunter (14) and Sydney (12)
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...
  • From: Uniontown, Ohio
  • Registered: Fri, 23 Sep 2011
  • Posts: 1,489

Re: What Chemo should be used for me?

What a beast!! Go get 'em Derin.

-Pam

Hoping for a miracle for my daughter, Lauren.

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.

Pamela's Website

22 Reply by Lainy (edited by Lainy Fri, 20 Jan 2012 09:27:44)

  • From: Phoenix AZ
  • Registered: Fri, 13 Jan 2006
  • Posts: 8,224

Re: What Chemo should be used for me?

OK, Derin, you are now our Superman Poster boy! Keep up the fantastic work!! Have a great weekend.

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.
  • From: Sarasota, FL
  • Registered: Wed, 28 Dec 2011
  • Posts: 183

Re: What Chemo should be used for me?

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!

Derin

Husband to Eileen, Dad to Hunter (14) and Sydney (12)
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...
  • From: Sarasota, FL
  • Registered: Wed, 28 Dec 2011
  • Posts: 183

Re: What Chemo should be used for me?

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!

Derin

Husband to Eileen, Dad to Hunter (14) and Sydney (12)
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...
  • From: Phoenix AZ
  • Registered: Fri, 13 Jan 2006
  • Posts: 8,224

Re: What Chemo should be used for me?

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!!!

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.