1

(1 replies, posted in Good News / What's Working)

Does anyone have any experience with this drug taken with capcitabine

2

(22 replies, posted in General Discussion)

our prayers are with you

3

(16 replies, posted in General Discussion)

Hi everyone, I am taking Robert up to Moffitt tomorrow and hope to get a second  opinion with the radiation oncologist for a new  radiation therapy invoving  injecting 90-y glass beads into the tumor with radioablation.  Has anyone had any experience with this?

4

(16 replies, posted in General Discussion)

Robert had the pet scan and some areas lit up that I have not heard  are indicative of cholangiocarcinoma.  Have you ever seen pelvic bone mass or small nodules in the lungs from this tumor.?  He still feels great but the treatment may make him ill.   Let me  know...thanks, nancy

5

(16 replies, posted in General Discussion)

Thank you all for all  your good thoughts and  prayers.  In this holiday season when this illness takes on a life of its own, your well wishes bring us hope.  Robert had a cat scan the other day and it showed that his chemo treatment of gemzar and oxciliplatin had reduced the tumor by 33%.  but some tiny specks have now appeared outside the lung.  He is going for a pet scan on the 18th but it looks like more chemo is up the pike.  I will let you know how it goes.  Meanwhile, Happy Holidays to all!

6

(16 replies, posted in General Discussion)

We just finished six cycles of systemic chemotherapy with gemzar and oxcilaplatin and are having the cat scan Nov. 30.   I know it sounds crazy but Robert must be feeling better because he spent the last few weekends  dancing the night away with me.  I can only hope that his tumor has responded .   Send us your prayers and as always I thank you for the support.

7

(22 replies, posted in General Discussion)

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

8

(22 replies, posted in General Discussion)

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

9

(22 replies, posted in General Discussion)

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....

10

(22 replies, posted in General Discussion)

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?

11

(22 replies, posted in General Discussion)

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.

12

(22 replies, posted in General Discussion)

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

(22 replies, posted in General Discussion)

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?

14

(22 replies, posted in General Discussion)

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.?

15

(22 replies, posted in General Discussion)

wishing you to be cancer free!

16

(22 replies, posted in General Discussion)

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?

17

(22 replies, posted in General Discussion)

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.

18

(3 replies, posted in General Discussion)

Has anyone heard of an alkeline diet including alkeline water for chemo patients?

19

(22 replies, posted in General Discussion)

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.

20

(11 replies, posted in Introductions!)

Thank you for your thoughts and well wishes.  We will certainly take this information to the oncologist and will follow his regiment.  I will stay in touch and let everyone know how things are going.

21

(11 replies, posted in Introductions!)

Thanks for your response.  The oncol;ogist appointment is next week and  I am interested in which drugs for chemotherapy that you recommend for treatment.  I was thinking the gemox and one of the platinum combonations are the most successful in combating this tumor.  What are your thoughts?

Thank you so much for the comprehensive list of treatments available.  They will be most helpful in making our decision on what the next therapies should be after the chemoablation that my husband just had.  I will bring this  to the doctor on the next visit and we can discuss the options.  I will keep you informed of the progress and hopefully that will continue for years to come.

23

(11 replies, posted in Introductions!)

As stated in my message under Bluebird, my husband recently diagnosed himself with cc.  He wnt through the usual followup with a biopsy and visit ti Dr. Levi at the University of Miami for possible resection.   The problem was that the tumor was 10 cm  with possible lymph node involvement therefore not resectable at this time..  that is why he went for chemoablation and follow up chemotherapy or possible chemoembelization to shrink the tumor.  The ablation was successful in containing the tumor and we hope the next  procedures will be as promising.  Thank you for all the information and support as I truly appreciate it.

24

(8 replies, posted in Introductions!)

My husband too was diagnosed with cc.  He had no symtoms except a lack of energy during the day.  The doctors thought he was  overworked and needed  a vacation.  As a radiologist he decided to check things out for himself and did a cat scan only to diagnose himself with a 10cm tumor in the right lobe of his liver.  He has had two chemoablations and is now going to start systemic chemotherapy.  This disease  is so random and catches everyone by suprise.  Thank you all for sharing your stories and treatments.  This foundation  has been a G-d send.

25

(2 replies, posted in Introductions!)

On Monday I start chemoablation.  I was diagnosed one month ago, I hope treatment is not starting too late.