• Registered: Sat, 31 Jul 2010
  • Posts: 98

Topic: xeloda-oxiliplatin

my sister has been on this treatment for two cycles with severe side effects that i have talked about before. last week they gave her an additional week off because she was having a lot of pain in her stomach. a ct scan was ordered and yesterday we got the results that they "see something near her liver" they claim they dont know what it is and have ordered an mri on wednesday. they have stopped her chemo until they get these results saying they arent sure if this protocol is working. when they say something like "seeing something" or "we dont know if it is working" it shows how little i think they know about this terrible disease. the dr said they are not going to give her the oxiliplatin again because of the side effects and will just keep her on the xeloda. i dont know what to think about all of this and i am trying to stay positive. so much more research and attention needs to be paid to this cancer but it is not getting the attention of the medical community and i dont understand it. right now my sister is feeling the best she has in a while since she hasnt had any chemo in two weeks but is that allowing the cancer to grow in the meantime. i guess all we can do is pray that a cure or even a more effective treatment can be found. we are praying the mri comes back with good news. it would be nice to get some of that kind of news sometimes.

  • From: Phoenix AZ
  • Registered: Fri, 13 Jan 2006
  • Posts: 8,218

Re: xeloda-oxiliplatin

Dear Sally, I am sorry for the bumps your Sister is getting. I understand that chemo/radiation keeps on working for several months after it is stopped. Like the ever ready Rabbit, it keeps on ticking. Good news I guess would be that what ever they see is small enough that they can't tell yet what it is. I don't think you will get one nano second of an argument here that CC needs more research and more attention! You never know how strong you are until "strong" is the only choice you have!

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, 15 Oct 2010
  • Posts: 1,738

Re: xeloda-oxiliplatin

Hi, sallypa,

Just in case ,the following info may be of helpful.

"(My own experience told me that MRI with contrast is  a good "follow-up" alternative to use right  after initial CT with contrast shown inconclusive report in the early stages of CC development ).Using MRI or PET to rule out recurrence or give the patient an early and more options to treat the recurrence while the CC is smaller than 2-3cm.MRI can also find additional  small lesions which CAT SCAN missed. "
also
'Additional info. from uptodate.com
MRI and CAT SCAN (CT)  have similar resolution for liver lesions.
CT has been considered to be superior to MRI for evaluating extrahepatic organs and calcifications. MRI is more specific than CT for differentiating cavernous hemangiomas,diffuse hepatic steatosis and focal fatty infiltration.
Also MRI should be reserved for the evaluation of lesions less than 2 cm,or lesions located adjacent to the heart or to major intrahepatic vessels.
If you are allergic to the IV  iodinated contrast agent used for CT,then MRI is the alternative because the contrast agent used is different than CT. and MRI is not involved  radiation ."
I hope the above info. helps.
God bless;.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.
  • From: Willow Grove, PA
  • Registered: Wed, 06 Apr 2011
  • Posts: 774

Re: xeloda-oxiliplatin

Sally:
I'm sorry for your sister's newest bump on the roller coaster.
I will say that when I was on oxaliplatin, I had a few lesions on my liver that came and went on the CT scans.
I hope it turns out to be nothing. I will keep her in my prayers.

Kris

Don't just have minutes in the day; have moments in time.
  • Registered: Sat, 31 Jul 2010
  • Posts: 98

Re: xeloda-oxiliplatin

appointment today at 3:30 for results of mri. just praying that what was seen on ct scan is nothing.

  • From: Phoenix AZ
  • Registered: Fri, 13 Jan 2006
  • Posts: 8,218

Re: xeloda-oxiliplatin

Sally....here is praying for nothing!

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.
  • Gavin
  • Gavin
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  • From: Scotland - Dundee
  • Registered: Tue, 23 Sep 2008
  • Posts: 4,832

Re: xeloda-oxiliplatin

Sally,

My fingers are crossed for your sister today and I so hope that she gets some good news today. Positive thoughts coming over your way.

Hugs,

Gavin

  • Registered: Sat, 31 Jul 2010
  • Posts: 98

Re: xeloda-oxiliplatin

thank you for the good wishes. we did get good news today at our appointment with oncologist. dr said he doesn't believe what is shown in ct scan and mri is a tumor. he won't guarantee it but said it appears to be a blood vessel. no new tumors were seen either. he did say her liver appears to be damaged some but believes that to be due to the chemo. has anyone ever heard about this. after we got this good news. we asked what now. dr said we have two options either rest and wait and see if tumors return or follow thru with the oxiliplatin and xeloda. our first thought was lets wait and see. she has had such a difficult time with the oxiliplatin why not take the break. but than we thought the cancer had spread after the first surgery/chemo/radiation so if it is metastatic we want to try to kill the cells wherever they are now before more spreading occurs. the mri was only done on her liver and abdomen. we asked for full mri but insurance wouldn't pay for it at this time. this is all so complicated. we finally felt it was best to continue with chemo. dr said there would be one more cycle of oxi and xeloda. the confusion is originally they said it would be four to five cycles, than they said we could stop altogether and than they said they would do one more cycle which would bring her total to three. does anyone know if there is any standard of length for this chemo protocol. we don't know if we are making the right decision about going through another round of chemo but another thought we had was if we complete this and God forbid the tumors return we will at least know this chemo doesn't work for her. we would hate to not know that and than they decide to use it again after a break when it might not work. you can drive yourself crazy trying to figure out what the right decision is.  the chemo doesn't start again until next monday so we have time to think and change our mind. i would appreciate everyones opinion on this. for the rest of this week we are just going to enjoy and celebrate the good news we got today.

  • From: Phoenix AZ
  • Registered: Fri, 13 Jan 2006
  • Posts: 8,218

Re: xeloda-oxiliplatin

HURRAH on the good news. I can't help with the Chemo except follow your gut, it's usually right! What a Sister Act you 2 are! Wonderful.

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: Willow Grove, PA
  • Registered: Wed, 06 Apr 2011
  • Posts: 774

Re: xeloda-oxiliplatin

Sally:
Glad to hear some good news!
Unfortunately, the chemo does tend to damage any "weak" cells in the liver, also. As I stated in another post, the oxilaplatin caused lesions to appear in my liver while I was on it. They did go away after I finished my oxy cycles.
And, unfortunately, I think most of this is a guessing game, even for the oncs. This cancer is being researched, but there is not enough information out there for a standard protocol. I think the oncs "guesstimate" based on what they hear, read, and how their patients handle the treatments. I also think it's harder for oncs and researchers to get a handle on treatments, because what works for one person may not work for another.
I hope she gets thru this next cycle and starts to heal! And that everything stays stable for her.

Kris

Don't just have minutes in the day; have moments in time.
  • Registered: Fri, 15 Oct 2010
  • Posts: 1,738

Re: xeloda-oxiliplatin

Hi,
there are no standard protocol .normally is 6 cycles and scan for progress of the treatment and determine the next step to go forward or change to another treatment for the cycles that is recommended for that new chemotherapy, Kris is right on her assessment about the treatment plans for CCA. In short, they are trying what they think is good for the patient at that point of time (the time of appointment). I still don't think chemotherapy is the way for finding the cure fast enough for most of us who suffer for CCA.
Most of the chemo regimens is for 6-8cycles and scan for results ;as you can see  on this web site there is not uncommon to be on Gem/CIS more than 6 cycles.;not to mention Gemox ; Gemzar or 5FU monotherapy which the manufacturers indicated " till disease progress or side effects intolerable." as the criteria to stop  the use of the drugs. that means if the drug works , the therapy can be used for life.(what kind of quality of life is that?).

My suggestion is that you are always prepare psychologically  the CCA will be back,(>65%);do not expect otherwise. so if this is what you believe and agree;  then "to stop the treatment and wait "may not be the best option; but I also know patient are tired of chemotherapy(I know, I am on Gemzar,the easy one for 14 month and I hated it.)
So the logical choice here will  be  just have the Xeloda  2 or 3 tablets twice a day,but make sure you talk to the oncologists first and he agree,he is the doctor and i am only a  patient .I think in that way ,the patient still have chemotherapy to control the CCA  but  can avoid the harsh side effects of oxaliplatin or cisplatin . The patient will have both sides of world -less and tolerable side effecte and stil have chemotherapy to keep the CCA under control.
Yes, there are side effects on Xeloda,but I think if your want  both the worlds(good and bad); Taking Xeloda by mouth is my choice under you circumstances.
God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.
  • Registered: Sat, 31 Jul 2010
  • Posts: 98

Re: xeloda-oxiliplatin

my sister started round 3 of chemo yesterday. they did lower the dose and gave her benadryl to try to alleviate the side effects she was suffering. something worked because she tolerated the oxiliplatin much better this time. our question was is the lowered dose strong enough to do its job. they really couldnt answer. we will just have to wait and see. there are always questions in your mind about if your making the right decision. have to try to push them out and keep thinking positive and praying for success.

  • Registered: Sat, 31 Jul 2010
  • Posts: 98

Re: xeloda-oxiliplatin

haven't had much to update lately but yesterday my sister had an appt with oncologist. she completed her cycle of oxiliplatin and xeloda about two weeks ago. after initially having severe reactions to the oxiliplatin they lowered the dose for the final round and it was much more tolerable. they have now scheduled a ct scan for the end of june to see if anything shows up. we wanted the test to be sooner as it will be well over a month since chemo stopped when the scan is done. we are praying for the best. we had a nice memorial day weekend and are planning a busy summer full of health and happiness. we just have to keep moving forward.

  • From: Phoenix AZ
  • Registered: Fri, 13 Jan 2006
  • Posts: 8,218

Re: xeloda-oxiliplatin

Sally, it sounds like you and your Sister have good plans. A dynamic duo! Keep thinking positive and we look forward to hearing the Scan results. In the meantime have some summer fun! Good to hear from you again.

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: Sat, 31 Jul 2010
  • Posts: 98

Re: xeloda-oxiliplatin

had some great news yesterday. my sister went for her ct scan and it was clear! she will get the summer off from chemo and go back in 3 months for another scan. even though we know this cancer is always lurking around the corner we are going to try to relax and enjoy the summer.

  • From: Willow Grove, PA
  • Registered: Wed, 06 Apr 2011
  • Posts: 774

Re: xeloda-oxiliplatin

Oh I am so glad to finally hear some great news again!!!!! I am so happy for your sister and the news! Have a great summer.
Hugs,

Kris

Don't just have minutes in the day; have moments in time.
  • From: Phoenix AZ
  • Registered: Fri, 13 Jan 2006
  • Posts: 8,218

Re: xeloda-oxiliplatin

YAY! Let's hear it for clean scans! That is wonderful news and again, bring on the summer and some fun!

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: 8,173

Re: xeloda-oxiliplatin

sally....Kris and Lainy said it: Congratulations.  Enjoy your summer.
Hugs,
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
  • Gavin
  • Gavin
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  • From: Scotland - Dundee
  • Registered: Tue, 23 Sep 2008
  • Posts: 4,832

Re: xeloda-oxiliplatin

What great news about your sister Sally!! Many thanks for sharing and long may the good news continue for her!! Time indeed for you all to relax and enjoy the summer!!!

Hugs,

Gavin