Topic: Gemzar/Cisplatin Combo - recommendations from Mayo vs. MD Anderson

So, Ben and I met with MD Anderson yesterday for our second opinion (we had visited Mayo first for initial diagnosis of non-resectable CC, input metal stent, etc.).  We were really trying to understand best approach for chemotherapy.

MD Anderson and Mayo were pretty aligned around an initial start of Gemzar andCisplatin, where they varied was the frequency.  Mayo recommends a treament on Day 1, Day 8 and Day 21.  MD Anderson said they have found that treaments every two weeks strikes a nice balance between quality of life and letting the chemo work.

I know from reading that the GEM/CIS combo is the typical starting place now for CC - just curious if anyone has any thoughts or experience on the cycle? 

The oncologist at MD (Dr. Rochna Shroff) was very impressive just like all the impressive doctors at Mayo- she also said she would send off a sample of the biopsy to a group that's doing DNA/genetic analysis on tumors (I didn't get their name), but they are researching ways to customize chemo treatments based on the genetics of the individual.  She said once the gem/cis combo starts working it would help her decide what to do next...anyone ever heard of that?

Ben has decided to have his chemo administered locally in our area (Fort Lauderdale) and overseen by Mayo or MD (he just needs to decide which).

Thanks everyone for your ongoing support and ideas - you are all amazing!

tom

My partner Ben was diagnosed in August 2010 with non-resectable stage IV intrahepatic CC with 6-18 months prognosis.   He was 51 at the time - and he is now 55. 

Don't give up!

Re: Gemzar/Cisplatin Combo - recommendations from Mayo vs. MD Anderson

Tom....Often times the application of chemotherapy varies from physician to physician, as it is in your experience.  This can be related to either, personal experience with their own patients or, follow-up studies regarding the effectiveness of the treatments.  Either way, it is not unusual for cycles to differ depending of who you are speaking with.  There is another thought I have, which may or may not be true.  I believe that pharmaceutical companies test the highest, tolerable amount in clinical trials therefore, it is likely that the lower doses of the very same agent may be just as effective, but there is no data to prove it.  It will be interesting to see as to how many people respond to your questions re: the cycle of administration of Gem/Cis and how it differs amongst our members.
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

3 (edited by kathyb Thu, 30 Sep 2010 19:18:17)

Re: Gemzar/Cisplatin Combo - recommendations from Mayo vs. MD Anderson

My experience with my oncologist goes along with what you say, Marion.  When my dosage of Gemzar was reduced and then we had to reduce the Cisplatin and I questioned the effectiveness of the treatment this way, he responded, "We just don't know."

Kathy

Re: Gemzar/Cisplatin Combo - recommendations from Mayo vs. MD Anderson

Kathy....To answer the question I would like to see clinical testing with the smallest dose of medication vs. the highest amount of medication and the proven benefits thereof.
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

Re: Gemzar/Cisplatin Combo - recommendations from Mayo vs. MD Anderson

I am on Gemzar (1400)/Cisplatin(40) for 8 cycles.  A cycle is chemo on week 1 and 2 and then have a week off.  I have just started this, so don't know how it will go.  Last year, I had radiation everyday for 6 weeks, along with chemo (Gemzar, starting at 600 and down to 200 because of low white blood cells, for one day a week along with the radiation.  This did not shrink the cancer, but it did not grow, either.  I was not on any treatment from November '09 until this month when I started the chemo, again.  I continued to have blood tests and CAT scan and MRIs.  They began to show some growth around June and then my CA-19-9 and CEA blood tests have really shot up which is very distrubing.  I will be having another MRI the last of October to see how well this chemo treatment is doing.
The doctor I had before, wanted to start more chemo the first of the year, but I started looking for another doctor who did not have so many patients.
Since the cancer seemed not to be growing, the oncologist from UCSF thought that we should wait until she could see some change on the scan and not rely solely on the CA-19. 
So, as we are all finding out, different doctors have different opinions on how and when to treat cholangiocarinoma.  As Kathy's doctor said, "they just don't know".  Hopefully, one day soon they will know.
Tom, no one has ever mentioned to me DNA/genetic analysis, so I have no comment on that.
Best wishes to all of you.
Theresa

Re: Gemzar/Cisplatin Combo - recommendations from Mayo vs. MD Anderson

Tom-

My dad has CC and was able to have a Whipple, but still needs further tx and are awaiting him to be healthy enough to start the chemo combo. We, too, are fortunate to be in a facility where they are doing the genetic testing to try to customize chemo treatment. There is a sub-branch of the NIH at our main hospital (Barnes, St. Louis, MO.) Unfortunately, we have been told that the back log is 3-6 months, so we may have to change mid-stream. My dad
signed the eight page release and we are in the cue. Fingers crossed we get some results from this exciting new path!

Best of luck,

Stacey

Re: Gemzar/Cisplatin Combo - recommendations from Mayo vs. MD Anderson

Hi there everyone! I am new to this website as my mom was diagnosed in June 2010 and had her resection on July8th here in Canada. She had a bunch of complications and had to go back in for adhesion removal secondary to a bile leak that went out of control and sepsis, but she had a slow recovery and is now doing fine, despite lots of abdominal wound pain. My mom is getting ready to start Gemzar/Xeloda for a "close margin", even though all the margins were negative. She tends to be really sensitive to many medications and can't even tolerate IV gravol or IV morphine so she is soo worried about starting the chemo and is convinced she will have horrible side effects. I can palpate her fear. As her oldest daughter, it is hard. She is still so young at 58. We are still waiting though, because her med oncologist refuses to do the chemo for her stating there is no evidence for it in her case, so we are waiting for a referral to another oncologist (We got the advice to start the chemo combination at Memorial Sloan Kettering in NYC with Dr. Karyn Goodman, who is a radiation oncologist); she suggested one week Gemzar and one week off with taking oral Xeolda daily (but we are also still waiting for her recommendation letter so we can give it to our doctors here). She is also following up the chemo with focussed respiratory gated radiation therapy for that one close liver edge after three months of chemo...any advice and experiences would be much appreciated! Thanks

Re: Gemzar/Cisplatin Combo - recommendations from Mayo vs. MD Anderson

Hello Kavita....  I am sure that you will be receiving many responses to your questions from the members on this site.  Therefore, I just wanted to welcome you and say that I am glad that you have found us. 
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

Re: Gemzar/Cisplatin Combo - recommendations from Mayo vs. MD Anderson

Thanks Marions! Well my mom has started her oral Xeloda and goes for her first Gemzar on Monday; we'll see how she does. They are planning for her to take the regimen from three to six months depending on the results of her follow up PET scan. Her original PET scan from two weeks ago showed no evidence of disease recurrence 5 months post surgery, so we all have our fingers crossed.
Thanks for the kind words, hope everyone has restful holidays!

Re: Gemzar/Cisplatin Combo - recommendations from Mayo vs. MD Anderson

Haven't posted in a few weeks - but (luckily) nothing much to report.  Tomorrow (January 7th) Ben will complete his 4th cycle of the Gem/Cis combo.  He continues to do well with really no side effects with the exception of some hair loss throughout his body.  His blood counts continue to look good and normal according to the doctor.

Next week he has an MRI which we will discuss with the doctor on 1/20, so we will anxiously be awaiting to see if the tumor has stopped growing (or hopefully shrunk)!  Now that we are closer to that I would say that both of us are acting a bit nervous and I'm probably a bit more emotional these days.  Things have been going so well with the chemo, and I think that builds up the hope that it's actually doing something since he has had no other symptoms...but the proof will be in the MRI.

It's amazing how life seems so normal outside of the chemo days - but behind all of it we still know what lies ahead, which some days gets me down, but trying to just take each day one day at a time, I do feel lucky that it's been four months since diagnosis and everything seems to be going so well.

I'll report back after the results are in, I am trying to keep up with the board as best I can!  Take care everyone, my thoughts are always with you.

tom

My partner Ben was diagnosed in August 2010 with non-resectable stage IV intrahepatic CC with 6-18 months prognosis.   He was 51 at the time - and he is now 55. 

Don't give up!

Re: Gemzar/Cisplatin Combo - recommendations from Mayo vs. MD Anderson

Tom....test results always are anxiety producing.   I think it comes with the territory. But, with Ben feeling as well as he has and him tolerating the chemotherapy just as well all things look good.  My fingers are crossed for a great report confirming a great response to the current treatment.  Hang in there you two.  There is a tidal wave of support coming your way.
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

Re: Gemzar/Cisplatin Combo - recommendations from Mayo vs. MD Anderson

Hi Tom, good to see your smiling face again! Now listen to Mama Bear. You guys are doing great with everything. Don't go feeling down because you think you know what is coming! Then you will never look back and remember the good times, you will only remember your down times or they will somehow interfere. Be strong and come visit us more, I have missed you!

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: Gemzar/Cisplatin Combo - recommendations from Mayo vs. MD Anderson

Hi Tom,

Great to hear from you again and glad that you have nothing to report! The waiting game is one that we are all too familiar with and which none of us likes playing. It is a pain but you will get there. And taking things one day at a time is a great idea as well. Make the most of today and think about tomorrow tomorrow.

I'm keeping my fingers crossed for Ben's MRI and hoping for the best possible results. Let us know how he gets on.

My best wishes to you and Ben,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Gemzar/Cisplatin Combo - recommendations from Mayo vs. MD Anderson

I started on the G/C combo in January, 2010. My cycle was once a week for two weeks and then a week off. I did that through September when my PET scan showed no tumors. Six weeks later they were evident again. My oncologist (Minnesota Oncology) recommended getting back on the same schedule. I decided to go to Mayo as it's just 90 miles away from my home. In a nutshell, I was told that my oncologist was right on the mark, that I should go back to St. Paul and I'd be in good hands. I started the G/C combo again last month and will have another scan at the end of April to see what's happening.

My main side effect is anemia (no hair loss and I've gained 20 pounds). I get injections of aranespe and neulasta to build up my blood counts.

Maybe slightly off-topic - but I've been getting regular PET scans to determine the effectiveness of chemo on the tumors. Mayo gave me a CAT scan instead. I see on other entries the mention of MRI's. Is one test more reliable than the others? I haven't been able to find pertinent info online.

Re: Gemzar/Cisplatin Combo - recommendations from Mayo vs. MD Anderson

Hello Tomlee and welcome to our wonderful family but wish you didn't have the need to join us. PET vs CT vs MRI...Teddy had them all but our Oncologist preferred the PET Scan. I think some of it depends where the tumors are located as they may show up differently. I remember the ONC telling me that a PET shows questionable areas where an MRI is more defining on a specific area.
If Mayo says stay where you are that is fine, but just so you know we do encourage more opinions if you just don't feel totally comfortable. Please keep us posted now that you have joined. Oh, would you mind posting this under Introductions, since it is your first, I am afraid it will get lost in this thread and I know others will want to welcome you aboard.

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: Gemzar/Cisplatin Combo - recommendations from Mayo vs. MD Anderson

I've never had a PET scan.  My Mayo oncologist told me PET scans were not the best for my situation.  Maybe they are for you.  I had a CT locally and at  UIHC.  When I questioned the Mayo surgeon  (my tumor turned out to be inoperable) about why I had MRI's at Mayo and CT's elsewhere he said, "If you ask the MRI people, they think they are better."  He then indicated that both CT's and MRI's will show the results they need.

This is what I found on the web:
Cat scans are a specialized type of x-ray.  An MRI uses magnets and radio waves to create the images.  No x-rays are used in an MRI scanner. The PET shows molecular function and activity not structure

Re: Gemzar/Cisplatin Combo - recommendations from Mayo vs. MD Anderson

Tom, my mom is seeing Dr. Shroff at MDA and we love her. She has had 3 cycles of Cis/Gem and tumor is shrinking we are doing 3 more then adding Tarceva150mg daily. How did you do with the chemo?

Re: Gemzar/Cisplatin Combo - recommendations from Mayo vs. MD Anderson

Tlsinftl hi
I am trying for the first time to see if something I know can help someone else.
My husband Darrell was diagnosed in Feb 2011 with 5 small tumors left lobe and one large one right side. He completed 8 cycles of gem/cis twenty one day cycle. Not sure if others had this because it sure was a concern for the nurses but Darrell received both drugs day 1 and day 8. The nurses were constantly trying to cancel his day 8 chemo saying his numbers were to low but for some reason ( we thought maybe because he was going to get a week off) the numbers could be lower on day 8. Not sure why and had to fight more then once to get the nurses to check again and they always came back shrugging their shoulders but giving him his chemo. Don't get me wrong every one of them was awesome they just had trouble understanding this. Anyways besides the first treatment after which Darrell was very Ill and ended up with a blood infection he handled it ok. We found as time went on the vomiting subsided and he began to eat and gain back about 25 of the 50 lbs he had lost. After a break after the 8 cycles He has gained all the weight back and has just had a CT scan to see where things are. During the chemo the 5 very small tumors disappeared and the large one had some shrinkage. Now we play the waiting game till the 18 th
There that was ok
Take care everyone and thank god for you and especially you Pamela you give me strength
Love to all
Sue