Re: Time for my experience and help

Carlos......I have nothing to add to Kristin and Lainy's comments other than that I am trilled to hear the great news about your Mother's response to the treatment.  I am wishing for continued success.
Best,
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: Time for my experience and help

Hi Carlos,

Good to hear from you again and thank you for your update on your mum. I am glad to hear that your mum is doing well and I so hope that this continues.

My best wishes to you and your mum,

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: Time for my experience and help

Hi;

The appointment that we had was suspended until Friday because "our" oncologist could not come and did not want us to be attended for another person.

How would you face the two possible scenarios;

Good results. no sign of tumor, maintain or suspend chemo?

Bad results: Tumor has recurred, maintain the same chemo, change it, suspend?


Thanks for your time.

Re: Time for my experience and help

It's great to hear from you, Carlos.  I hope the outcome of the Onc visit was good.

Thinking of you & your mum.

Julia x

“When it is dark enough, you can see the stars." - Ralph Waldo Emerson

Re: Time for my experience and help

Carlos....I am focusing on "good results."  We try to steer away from the alternative.  Thinking of you and crossing my fingers, toes, and everything possible.
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: Time for my experience and help

Carlos, we just never know how things will come about or how we will face them. We just do. I always take the stand that it is what it is now let's get on with some treatment. Some treatment is good as I didn't hear the words "no treatment".  You have done very well up to now and I believe you will continue to do just as good. Please let us know what the outcome is today.

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: Time for my experience and help

Hi Carlos,

How did your mums visit to the Onc go today? I do hope that you got some good news.

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.

83 (edited by mlepp0416 Sat, 05 Jun 2010 20:23:34)

Re: Time for my experience and help

Carlos:  I have just read all the posts about your mom.  I'm very happy that she decided to go with the Chemo.  My husband Tom was able to have a liver resection in June 2008.  His team of doctors decided to not give him chemo after his successful liver resection (where they removed about 80% of his liver) because he had clean margins. My husband is now 63 years old and he was 61 when diagnosed.

In November 2009 he started turning yellow.  An emergency room visit and a ctscan revealed a new 2.5cm tumor in the remaining right biliary tree.  That tumor is inoperable.  His doctors told him to go home and make preparations and gave him a 6 month diagnosis.  We did not accept that and sought 2nd, 3rd and 4th opinoins.  The concenses was that the tumor was inoperable, but unlike his first oncologist, all the others agreed that radiation and chemo were in order and could help his situation.

After 28 radiation treatments, the tumor is dead, and he is continuing with chemotherapy (Xeloda) pill form 5 pills 2x a day.  Unfortunately because even though the tumor is dead it is still blocking the bile duct (as scar tissue) and the doctors are unable to place an internal stent to allow the bile to flow into the intestines.  Some of the bile is getting through but not enough because of his yellow color, so they inserted an external drain through his side into his liver to drain off some of the bile. (It drains into a bag)  This procedure has allowed him to look more normal in color.  We travel to Mayo in one week to have them try to put an internal stent into the liver.  (Mayo is one of the best hospitals in the US and has a lot of experience with CC patients)

My husband's new doctors are now telling us that if he had had chemo after his successful resection he may not be in the position he is in today.  We are now in the 7th month of his 6 month prognosis, so that goes to show that NO ONE has an expiration date stamped on their butt or on the bottoms of their feet.

Go with God and prayers from Green Bay Wisconsin coming your Mom's way.

KEEP KICKIN' THAT cancer.

Margaret (My husband and Cholangiocarcinoma)

Re: Time for my experience and help

Hi everybody;

Good news, the results of the scanner say very shortly "no evidence of disease" and after  six months chemo is canceled and from now surgeon will monitor her.
In recent months she has always accompanied by my dad, and i don

Re: Time for my experience and help

Carlos, the is such wonderful news! There is no reason you cannot stay in touch with the Oncologist. Did anyone tell you what her regime will be? Teddy gets monthly LABS and sees the Oncologist every other month. He also gets PET Scans 3 times a year. This way if it returns we are right on top of it.
My only other advise would be to just enjoy each other now as you are very lucky but also keep up your vigilance.

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: Time for my experience and help

Hello Lainy, I just book a personal appointment with the oncologist next week.My mom now is waiting for appointement with the surgeon after six month.
Right now I'm a bit lost with the following steps. Even with a clean PET Scan,  would not be better to continue with the chemo knowing that there were two positive nodes? On the other hand I have heard that Gemzar, if effective, is not beyond six months. Maybe there is another medication that does not have many side effects ...

As you see, I'm in a mess.

Thanks for read me;
Carlos

Re: Time for my experience and help

The problem Carlos, is that its like a game and we just hope to choose right and win. Everything is so different for everyone then add to that the fact it is a personal choice to do or not to do chemo. I am so glad you are meeting with the doctor and maybe he can clear some things up for you. As you have probably read on this site some believe in chemo some do not. Ask the doctor what combination he recommends and what the side effects are for each. Ask him his opinion of chemo versus no chemo and of course include the 2 nodes.
This disease sure keeps us on our toes. I would also like to suggest to you to take some breaks and be good to yourself or you will not be good for your mother. I have to admit I wonder what these breaks are? I myself take so few.
I guess I should say," do as I say not as I do!".  Hope your meeting goes well and clears up your questions.

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: Time for my experience and help

Carlos....  I am also thrilled to hear the good news.  These are my thoughts:  There will always be doubt when it comes to the treatment of this disease.  However, without any visible sign of the cancer (by current standards) it might be difficult to continue any type of therapy.  If nothing is detectable how do we then know for a treatment to be successful?  Presently, given all current, available testing methods, your Mom appears to be cured.  The lymphnodes are like sieves.  They collect debrie.  For all we know, the chemotherapy has eliminated all cancer cells floating in your Mom's blood stream. 
If you can keep the appointment with the oncologist then you may  be well prepared to receive some answers to your questions. 
Good luck, Carlos.  I appreciate your inquisitive mind.
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: Time for my experience and help

Lainy, Marions. thank you very much for your opinions.They are very appreciated.

Regards;
Carlos

Re: Time for my experience and help

Hi Carlos,

Thanks for the update on your mum, great news indeed and thanks for sharing it with us all here! I hope that the onc will be able to answer your questions at the next meeting.

My best wishes to you and your mum,

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: Time for my experience and help

Hi;

Yesterday my mum told me that one month after the completion of chemo she still has stomach swollen. Is this normal?


Next week we have the first appointment with the surgeon after eight months.


Thanks for your time;
Carlos

Re: Time for my experience and help

Hi Carlos,

Good to hear from you. Has your mum spoken with her doctor about ascites and does the doctor know about your mums swollen stomach? If not I would suggest that your mum speaks with her doctor about this to see what can be done about it. I hope all goes well with your mums app with the surgeon next week.

Best wishes to you and your mum,

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: Time for my experience and help

Hi Gavin;

Then it could be important. In the last scan where the result of the scanner said very shortly "no evidence of disease" oncologist told my mum that there was something (not very important according to her) in the ovaries and that it would be suitable an appointment with thh gynecologist(this thrusday).

I dont know if the swallen stomach could have some reltion with this and not with the last quimio.

By the way, she is doing a normal life and i

Re: Time for my experience and help

Ola, Carlos! I definitely agree with Gavin and would put a call in to the Doctor. Swollen/bloat may signal something not even related to the CC.  Please let us know what happens.

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: Time for my experience and help

Hi;

After appointment with gynecologist, he told her that everything was ok(thank goodness) and the swallen estomach would be for the surgery and quimio.
At the moment the swelling is not really big but this is enough to disturb a litle bit my mom.

As you know next week we have appointment with the surgeon. I hope he can say her what to do about this and  next steps regarding revisions and so on in addition.

Thanks to all of you.

Carlos

Re: Time for my experience and help

Good luck at the surgeons Carlos. I will be thinking good thoughts for your mom.

Kris

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

Re: Time for my experience and help

Carlos....good luck next week.  Please, keep us posted.
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: Time for my experience and help

Hi Carlos. Yes, you will have to wait to see the surgeon. I had some major surgery last Fall and the Surgeon said it would take at least 6 months to a year to get my stomach to normal. Good luck next week.

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: Time for my experience and help

Hi Carlos,

Good luck with the surgeon next week, I hope it all goes well for your mum.

Best wishes to you and your mum,

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: Time for my experience and help

Good Luck, Carlos!!!

Julia

“When it is dark enough, you can see the stars." - Ralph Waldo Emerson