Topic: Husband recently diagnosed with cc

I wanted to update you on my husbands current treatment.  He has had two chemoablations and a port put in in the last month. The tumor is contained and not so angry but the oncologist  recomended he start on  oxiaplaton and gemox starting on wednesday.  Hopefully this will shrink the tumor .  Thank you for all your support and suggestions.  I will keep you informed on the progress.

Re: Husband recently diagnosed with cc

Dear i3Carats, sounds like a steady as you go report and that is good. We actually like contained tumors. Hopefully the tumor will now start shrinking and we can be even happier!

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: Husband recently diagnosed with cc

Hi i3carats,

Thanks for letting us know what is happening with your husband and his treatment so far. As you say, hopefully this combo will work well and shrink that tumour down. Thanks for letting us know and tons of positive thoughts are coming your way from here.

Best wishes,

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: Husband recently diagnosed with cc

Well, today Robert just completed two days of chemo therapy and seems to be just fine.  The doctors tell us that 7 to 10 days after treatment to not be surprised if he is feeling tired and achey.  any thought on this would be appreciated.  Thanks again for all the  suppport.

Re: Husband recently diagnosed with cc

icarats:  Chemotherapy is accumulative and can cause side effects, but the degree of discomfort  varies from person to person. We have had reports of people responding well to the treatments without major complaints; some have a few problems whereas others had to switch to other treatments.  The one and continuous report we do receive though is that Oxaliplatin causes peripheral sensory neuropathies.  Therefore your hubby may be quite sensitive to touching cold objects and/ or he may find it impossible to drink cold beverages.  Some people resort to wearing gloves. Hopefully others will chime in and share their thoughts with us.  Congratulations on the completion of round two.  May your husband continue to do well. 
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

Re: Husband recently diagnosed with cc

Someone once told me that having cancer is like living in a parallel universe.  I never understood what my friend was eluding to until now.  I just spent the last week brewing concoctions from a vietnamese friend which invoves 10 jujubes and ginsing root to a gallon of water for 16 hours.  These roots and herbs are brewed on low heat  in a porcelain lined pot with a wooden spoon to combat the side effects of chemo therapy.  Surprisingly, it is giving my husband tremendous energy and focus.  He is in the second round of gemzar and oxilliplatin and has only felt fatigue and a little stomach ache which was promptly cured by the tea he drinks twice a day.  Apparently ginsing is a cure all for everything from cramps to cancer.  Anyone else out there have tried it?

Re: Husband recently diagnosed with cc

Hi there. I drink Ginsing Tea and love it. You cracked me up on the jujubees!!! I used to love them! I wonder what part they play. I always say what ever works and let's wish for it to keep working!

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: Husband recently diagnosed with cc

Robert is just finishing the second cycle and so far he's fine except I have a question.  Before they administered the  gemzar yesterday the blood test showed his platelets  at 80,000 and the nurse said he was borderline for chemo.  They went ahead and gave him gemzar and last night the platelets were at 137,000.  How fast do they recoup.?

9 (edited by PCL1029 Fri, 07 Sep 2012 22:24:24)

Re: Husband recently diagnosed with cc

Hi,
that is Ok .
recovery is an individual thing.
but recovery to 137,000 before the next scheduled cycle is always a good sign.
some doctor use 100,000 as a cut off point ;others use 75,000 and 50,000 ;all based on the doctors experiences and their own judgement on each patient's condition. and that is why need experience oncologists to make the call rather following the books.
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.

Re: Husband recently diagnosed with cc

Thanks for your info.  We went to see the radiation oncologist yesterday who gave me the impression that radioemboilization is as effective as chemo embolization or less so.  This was perplexing and I wanted to ask you all of your experience with radioembolization.   I was under the impression that using  all three  modes of therapy were the most effective.  Any thoughts?

Re: Husband recently diagnosed with cc

HI,
May I ask how old your husband?
May I ask why the interventional radiologist want to switch to radioembo rather than continue to have chemoablation?  If the doctor just want to try radioembo to see whether is a better treatment or not ;and as you said the cancer is well contain and not gettting worse;than I will continue chemoablation and NOt to have radioembolization.
Under our experience forum of radiation treatment; there are a lot of info about radioembolization.  please take a look too.
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.

Re: Husband recently diagnosed with cc

Hi again, thanks for answering my post.Your foundation is the one bright spot in my cc psyche.  Robert is 62 years old and in great health except for this 10 cm tumor on his liver.  He will be having a follow up cat scan next week to see what has changed in the last month.  Thank you all for your information.

13 (edited by marions Sat, 15 Sep 2012 12:30:06)

Re: Husband recently diagnosed with cc

13carats:  just wanted to chime in.  You might be interested in reading the below:
http://clinicaltrials.gov/ct2/show/NCT00956930

trial:http://clinicaltrials.gov/ct2/show/NCT00956930
and explanations of treatments:
http://com-radiology.sites.medinfo.ufl. … l-10-2.pdf

http://www.sirweb.org/news/newsPDF/fact … _sheet.pdf

http://www.ncbi.nlm.nih.gov/pubmed/19552767



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

Re: Husband recently diagnosed with cc

Hello again,  Roberts doctor called today and  suggested he do gemzar and oxciliplatin in consecutive  sameday administrations.  Do you think there is a risk in toxicity?  Why do they normally do this in two consecutive days every two weeks?  Any input is greatly appreciated.

Re: Husband recently diagnosed with cc

13carat...I believe that we have seen various administration doses and time administration with this therapy.  Hopefully others will chime in and help you out.
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

Re: Husband recently diagnosed with cc

Thanks Marion.  This is such a difficult and tumultuos road.  Today we were informed that our insurance will only pay a small portion of outpatient chemo therapy but will pay for in patient therapy  and this is causing a big problem for the hospital.  Have you ever heard of anything so crazy?

Re: Husband recently diagnosed with cc

Hi,
please  check out the link below too:

According http://chemoregimen.com/Biliary-Tract-C … 27-37.html

And According to clinical pharmacology web site: 2 regimens are being used .
1. Oxaliplatin 100mg/M2 IV on day 1 and 15 in combination with gemcitabine (1000mg/M2 IV on day 1,8, and 15),repeated every 28 days.
2. Oxaliplatin on day 2 in combination with gemcitabine at a fixed dose rate on day 1, repeat every 14 days.

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.

Re: Husband recently diagnosed with cc

13carats....I hear you.  Given the rarity of occurrence of Cholangiocarcinoma, insurance companies have little data to fall back on.  It seems that they design blanket rulings based on their own criteria (whatever that may be.) In this instance it appears that the insurance company wants defer a certain amount of cost to the hospital. I know very little this subject; hopefully someone out there is able to offer some information to us. 
These are my thoughts:
Enlist the help of the prescribing physician. He/she will have plenty of experience with denial of coverage.
Ask the Hospital personnel about the rulings for Medicare patients in re: to treatments of this disease. This sets the tone most insurance companies follow. 
Try not to become overly upset; these issues (generally) are worked out.

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

Re: Husband recently diagnosed with cc

13Carats, when we would have a problem with the Insurance Company, like for PETs, the ONC would intervene and somehow they would come through for us. Just a suggestion. Good luck!

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: Husband recently diagnosed with cc

Thanks for the input.  I went to customer service at the hospital and then to pastoral services and between them they are dealing with the insurance company.  I still have no idea who will ultimately  figure it  out but  meanwhile we are getting outpatient treatment.  Ill keep you posted....

Re: Husband recently diagnosed with cc

Hi everyone,  as the the weeks unfold there never seems to be a dull moment.  Robert had his third round of chem the other day and just as he was feeling a little better he tried to exersize  with light weights.   The next day he couldnt move his left hand and wrist and was in excruciating pain.  Is there any correlation to tendinitus and chemo with  oxciliplatin and gemzar?    By the way, the hospital is trying to figure out a way to adjust our bill with the insurance company.  I have also enlisted the help of the Patient resources foundation.  They act as an advocate for patients.  This is a really helpful foundation if you need help with insurance companies.  Thanks, Nancy

Re: Husband recently diagnosed with cc

Hi Nancy. My daughter, Lauren is also on Oxaliplatin. For a few days after receiving her infusion, her fingers lock up. So it might be from that chemo. Has he tried exercising since? Hers always goes away after a few days.

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

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.

Re: Husband recently diagnosed with cc

Thanks for the reply.  He seems to be getting better but it looks like its cellulitis and the doctor put him on antibiotics and no chemo this week  and now we wait to see how he is doing.  Let me know if  anyone else has had this  problem .  thanks, Nancy