1 Topic by PCL1029 (edited by PCL1029 Tue, 25 Sep 2012 15:42:30)

  • Registered: Fri, 15 Oct 2010
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Topic: What Will You Do After Adjuvant Chemotherapy Is Done.

Hi, everyone,

After resection and adjuvant chemotherapy was done,doctor say you are clean and you are a cancer survivor,if so then what will you do ?
May be you will do as most oncologists suggested,follow up with blood work every month and  CT scan or MRI every 3 -6 months to monitor the cancer; when the cancer comes back,(which in our case of cholangiocarcinoma,the recurrence rate is about 50% for extrahepatic and 75% for intrahepatic CCA.);then start with  different chemotherapy agents or targeted agents  and fight it allover again since there is no CURE is available at this time.

if you choose the above approach. do you think you may be just playing the "waiting game" or like "taking a long chemo break"? According to one study,90% of the patients,especially the  educated one,who have a college degree will explore other options such as complimentary and alternative therapy (CAM) ;immunotherapy etc. to further their treatment needs. Most likely,even if we try hard, we will not find what we wanted except a few of those lucky ones.
How do you improve the odds to delay the recurrence of this cancer and may be the odds of longer overall survival?

Then it comes to the topic of " Maintenance chemotherapy " or "Switch maintenance therapy".
In short, that means after the assigned cycles of adjuvant chemotherapy, even if you are clear , you will follow with " a lower maintenance  dose" of the same chemotherapy or " switch to a maintenance  dose" of a different chemotherapy or targeted agent  such as Capecitabine continuously  daily right after you stop the adjuvant treatment. It has not been proven that "maintenance chemotherapy" had worked for hepatobiliary cancers but may have worked on other cancer like colon or lung cancer.
See link below

http://www.oncologypractice.com/fileadm … Review.pdf

http://www.asco.org/ASCOv2/Meetings/Abs … ctID=47633

In short  I think this is a more active approach for me than like a sitting duck awaiting for the dismal outcome; besides, it is more like treating a chronic disease like hypertension or diabetes  that required daily administration of medications to control the symptoms; in doing so, I hope it can provide a longer disease control period for me , a better quality of life and in time for the cure.
But please remember ,it is just a suggestion and you should discuss this unproven concept next time you see your oncologist.

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: Fri, 12 May 2006
  • Posts: 8,165

Re: What Will You Do After Adjuvant Chemotherapy Is Done.

Great subject, Percy.  Can't wait to see the responses to your questions.
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
  • From: Akron, Ohio
  • Registered: Mon, 11 Apr 2011
  • Posts: 407

Re: What Will You Do After Adjuvant Chemotherapy Is Done.

Hi Percy,

I am on a break from chemo till October 5th when I will have a scan. The six week break makes me very nervous, it is like a love-hate relationship with chemo. I feel good not being on chemo but on the other hand I feel like I am not being proactive to fight my cancer. I changed my diet about a year ago and went to a vegetarian diet almost vegan and I drink a green juice most days. I do cheat once in awhile with a good steak but try to be good most of the time. I have read a lot of the cancer assassins website and do a lot of research on the food we eat. I loved forks over knives. I have done acupuncture which helped with pain. I am very interested to read what others have tried and what is working. Thank you for your thoughts.
Lisa

Everyday is a gift

lisacraine's Website

  • eli
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  • From: Ottawa, Ontario, Canada
  • Registered: Tue, 08 Nov 2011
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Re: What Will You Do After Adjuvant Chemotherapy Is Done.

Hi Percy,

I asked our oncologist about maintenance chemo when my wife finished adjuvant Gem/Cis.  I asked specifically about Capecitabine (Xeloda) because it's done at home.

He wasn't open to that discussion at all.  He was quite dismissive.  He said he wasn't aware of any evidence to support maintenance chemo in CC patients.  If I recall correctly, he said something to the nature of, "show me a study supporting it... then we can talk".  Of course, I don't have any CC studies to show him.

Assume for a moment that you can find an open-minded oncologist who is willing to prescribe maintenance chemo to CC patient in remission.  I very much doubt that insurance will approve it, considering that we don't have any evidence from the clinical trials.  Our government insurance is highly unlikely to cover it.

You can think of maintenance chemo as a weak form of adjuvant chemo.  As you know, the evidence to support adjuvant chemo in resected CC patients is not very strong.  We don't have a single Phase 3 randomized trial to support it.  We only have small, non-randomized Phase 2 trials.

This may change once UK BILCAP trial is completed. If BILCAP trial proves the benefit of adjuvant Capecitabine chemo, Capecitabine will likely become the new standard of care in resected cases.  If that happens, the next logical step would be to try Capecitabine as a maintenance chemo.

Percy, I agree with your line of thinking about maintenance chemo.  I think it makes perfect sense.  The only catch is, we need evidence specific to CC.

My very best wishes to you as always.
Hugs,
Eli

  • Registered: Fri, 12 May 2006
  • Posts: 8,165

Re: What Will You Do After Adjuvant Chemotherapy Is Done.

I don't disagree with any of the above mentioned however; some years back I spoke with a patient who had been (for many years) on maintenance with Xeloda.   Granted,  the experience of one patient alone does not present a scientific explanation of success however; it may leave open the possibility of insurance company compliance.  I would also like to add that this particular patient complained of heart valve problems he believes had been caused by the continuous use of Xeloda.  He was 86 years at the time of our encounter.  Don't know whether there is any validity to his claim, but thought to mention it anyway.
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
  • eli
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  • Registered: Tue, 08 Nov 2011
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Re: What Will You Do After Adjuvant Chemotherapy Is Done.

Marion, can you confirm that the person you mentioned was a resected patient in remission?

  • Registered: Fri, 12 May 2006
  • Posts: 8,165

Re: What Will You Do After Adjuvant Chemotherapy Is Done.

Yikes, Eli.  I don't recall.  A physician friend connected me with him at the time of my husband's original diagnoses.   At that time I was all over the place with thoughts, information gathering, and fear of what was to come.   My original posting on this subject must date back to 2006. We really can't give much credence to it as I don't know whether this gentleman had been resected nor, whether he had been intrahepatic or extrahepatic.  My intent was to mention it in order to provoke thoughts on the subject of maintenance therapy and to encourage others to share their opinions with us. I would be especially interested in knowing the thoughts of their respective physicians. 
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

8 Reply by PCL1029 (edited by PCL1029 Tue, 25 Sep 2012 15:50:30)

  • Registered: Fri, 15 Oct 2010
  • Posts: 1,735

Re: What Will You Do After Adjuvant Chemotherapy Is Done.

Hi, Marion,
As I told Eli, I may  be on Xeloda forever, I am  currently on the Xyloda for the past 10 month at  75% of the full dose and 2 weeks on and one week off.
In the research That I did about"the maintenance dose" topic disscussion,I found some at half the dose, or just 1000mg twice daily for ALL patients without regard to the body surfaces area (m2) at 2weeks on and one week off. Or one report indicated same dose at  5 days on and 2 days off ; or another report indicated dose per M2 ,but at a 7 days on and 7 days off schedule. All of the above dose schedule and frequency are done for solid cancers OTHER THAN that of CCA. But as you know, often ,if successful, they will try on us too.
This is a subject that requires the cooperation of the oncologist as well as the patient who understand why he will want such a prolong or even a lifetime chemotherapy until the CURE will be here in 3-5years.
My answer is that I do not want to be a sitting duck , I want to be proactive.
And Xeloda is relative easy to tolerate and is proven to be effective in other solid cancer. But even so, the main purpose is to prolong ,if possible, the disease control state,or theTTF( time to be free of the disease) as long as possible before it comes back again. It is still not a cure, that is why,in addition to that ,I continue to take the oncozac twice a day on my Xeloda days off.
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.
  • eli
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Re: What Will You Do After Adjuvant Chemotherapy Is Done.

Marion, thanks for clarifying. When I said that insurance approval of maintenance chemo could be difficult to obtain, I was talking about resected cases.

If the 86 year old gentlemen didn't have a resection, it's obviously a very different situation from insurance point of view. The approval of maintenance chemo could be very routine in his case.

  • Registered: Fri, 12 May 2006
  • Posts: 8,165

Re: What Will You Do After Adjuvant Chemotherapy Is Done.

Ha, Eli, I found my original posting dated August 28th, 2006.  You are right, no mention of a resection:

Here is the posting:

Last week I had the pleasure of talking to a wonderful older man.  He shared with me  that he had been diagnosed with CC in 1993 has two stints implanted, and  that he had been treated with 5-FU for ten quite tolerable years.  He is though quite upset that the treatments have caused problems with two of his heart valves.  After expressing my concern and good wishes he revealed that he was eighty-seven years old.  It warmed my heart - may it warm yours.


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
  • From: 306 Lilac Drive
  • Registered: Fri, 28 Dec 2012
  • Posts: 11

Re: What Will You Do After Adjuvant Chemotherapy Is Done.

Interesting thread........my husband is post-whipple.  I will mention Xeloda t his oncologist....

Laurie

12 Reply by PCL1029 (edited by PCL1029 Sun, 06 Jan 2013 11:33:50)

  • Registered: Fri, 15 Oct 2010
  • Posts: 1,735

Re: What Will You Do After Adjuvant Chemotherapy Is Done.

Hi, everyone,
the link below is in line with this topic discussion of "what will you do after adjuvant chemotherapy is done."

http://www.rttnews.com/2032349/cancer-e … x?type=can

For myself: Besides I am continuing on the "low dose maintenance " of using Xelodafor a year now; I am also taking an oral form of supplement to increase my immune systems' ability to fight against the inflammation .The capsule I am taking is "Yunzhi extract" capsule which displays the following pharmacological actions(PA).(The PA of "Yunzhi" is  not proven by the western medical standard as a drug;therefore it is classified as a supplement by FDA)
1.to activate the T-lymphocytes and other cells in the WBC group to fight again cancer cells.
2.to increase the production of antibodies,such as  cytokines IL-2 and IL-6 etc.to protect or increase our body defense against cancer and other inflammation condition in our body.( I view cancer as an inflammation condition of our own  normal cells)
Finally ,CAUTION: be aware of sub standard Yunzhi extract capsules manufactured by different companies. Choose wisely and carefully ,read some articles about the "Yunzhi" before you put down your money.
the following link may be helpful for knowing more about Chinese Herbal medicine.

http://www.mskcc.org/cancer-care/integr … versicolor

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: Akron, Ohio
  • Registered: Mon, 11 Apr 2011
  • Posts: 407

Re: What Will You Do After Adjuvant Chemotherapy Is Done.

Percy,
Thank you for the information. I should start radiation this week but I want something to take as maintenance.
Lisa

Everyday is a gift

lisacraine's Website

  • Registered: Fri, 15 Oct 2010
  • Posts: 1,735

Re: What Will You Do After Adjuvant Chemotherapy Is Done.

Hi,Lisa,
In your case, I will finish the radiation treatment first, rest enough till the energy level comes back and get your oncologist on board. Then if s/he choose adjuvant chemotherapy for you after the radiation, you can ask whether You can take Xeloda at home alone for connivence. after the 6 month or so of the standard treatment period, ,then You may like Eli, print out the article of low dose maintenance of using Xeloda to show to the oncologist to see whether s/he agrees with you. However, I do not think the oncologist will agree with you for taking  the Yunzhi supplement, because I do not think they have done any research reading on it. But  ,print the article out from the Sloan Kettering web site to help you in discussion with s/he. Then it will be up to you to decide whether to take the supplement.
Get well soon and
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.
  • Gavin
  • Gavin
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  • Registered: Tue, 23 Sep 2008
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Re: What Will You Do After Adjuvant Chemotherapy Is Done.

Thanks for all of this Percy! Very useful and informative as well.  I hope that all is well with you right now.

Take it easy,

Gavin

16 Reply by PCL1029 (edited by PCL1029 Sun, 06 Jan 2013 16:09:23)

  • Registered: Fri, 15 Oct 2010
  • Posts: 1,735

Re: What Will You Do After Adjuvant Chemotherapy Is Done.

Hi,
Thanks Gavin.
BTW, the following link may be of interest to some along with the same  line of thinking  about inflammation and cancer and provide additional info of the parameters that may be of value for prognostic monitoring of treatment response.

http://www.asco.org/ASCOv2/Meetings/Abs … tID=101367

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: Fri, 15 Oct 2010
  • Posts: 1,735

Re: What Will You Do After Adjuvant Chemotherapy Is Done.

Hi, everyone,
the link below is relate to low dose Xeloda maintenance.


http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2739638/

Gods.

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.