Topic: Time for a Different Treatment

We just returned from the oncologist's office.  Although my husband's recent CT scan did not show any change in his liver or lymph nodes, there has been an increase of fluid in his abdomen.  Because of the fluid and some recent elevations in some of his liver enzymes, the doctor suspects some progression and recommends a change in treatment.  My husband started FOLFIRINOX last November but several months ago the doctor dropped the oxaliplatin and reduced the dosage of the other drugs to reduce side effects.  The doctor said that there are still standard treatment options available as well as clinical trials to consider in the future.  He said that my husband's stamina and overall good health (not to mention his positive attitude) are factors in his favor.  My husband will have an ultrasound tomorrow and then we will meet with the doctor on Monday.
While this is not good news, the most important thing I have learned from this site is that one has to think of CC as a chronic disease.  When one treatment no longer works, you have to be ready to move on to something else.  We are very fortunate to be working with a doctor who also has this philosophy.

Re: Time for a Different Treatment

Linda, who know a new treatment may be the bes answer. Attitude is not everything...it's the ONLY thing! Best of 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: Time for a Different Treatment

Linda....I so much agree with you.  This cancer can be chronic in nature and given the fact that your husband is rather strong and resiliant with a fantastic dispostion, no reason to believe that he will not respond favorably to any of the other treatments.  Good luck on Monday and please keep us posted.
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: Time for a Different Treatment

Hi Linda,

Your husband sounds like he has a very positive attitude indeed and I so love that!! Good luck for the meeting on Monday. I hope that you both get some good news here with further options and my fingers are crossed for you both. Let us know how everything goes.

Hugs,

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 a Different Treatment

Thank you for your supportive comments, Lainy, Marion and Gavin.  There have been a few developments since I last wrote.  My husbnad has now been on antibiotics for seven days and his fever is completely gone and his energy level is improving.  When we went to the doctor on Friday, his bilirubin was 3.4 (the highest it has ever been) and he had some jaundice.  By Saturday morning, however, the jaundice had disappeared and there are no signs of it today either.  Finally, the doctor who reviewed the results of yesterday's ultrasound with us said there was "only a small amount of fluid" in the abdomen.  This was a surprise as we had understood there had been a substantial increase.  We're meeting with his regular oncologist tomorrow afternoon and are hoping for some more definitive information.

Re: Time for a Different Treatment

Hi Linda,

Thanks for the update on how things are going. That is good news about your husbands fever now being gone and also about the increase in energy too. My fingers are crossed that this good news continues for you both and you know that we are rooting for you. No doubt you will get more answers tomorrow from your regular onc and let us know how that goes. My dad had an episode like that as well, his jaundice came back for a spell, he felt unwell at the same time and got an app to see his specialist. Well by the time we got to see him he was feeling so much better and his jaundice had totally gone as well. We don't know what caused it to reappear and leave just as quickly, but we were glad to see the back of it as well!

Hugs,

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 a Different Treatment

Fantastic news, Linda, keep it coming.
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: Time for a Different Treatment

My husband's oncologist returned from vacation so we were able to meet with him yesterday.  As I mentioned before, my husband's CT scan did not show change with respect to the tumors but did show an increase in ascites as well as signs of infection.  In addition, his liver enzymes, including bilirubin, have been elevated.  The doctor suspected blockage of the common bile duct but an ultrasound indicated this was not the case.  Yesterday's lab results showed some improvement over three days ago.  Bilirubin is still high but has dropped from 3.4 to 2.6.  ALP and AST are still high but ALT is now normal.  Albumin improved slightly and protein is now normal.  Temperature and blood pressure are now normal and energy level is better.  There are still problems with indigestion, taste distortion and appetite but these seem to have improved slightly.
The doctor said he thinks it is unlikely that all these problems have been caused by infection alone and suspects that there has been some disease progression.  He therefore wants to change the chemo from FOLFIRI to GEMZAR.  This will start on Wednesday with three weeks on and then one off.
In the meantime, my husband has felt well enough to return to work and we're planning a week at our vacation cottage.

Re: Time for a Different Treatment

Linda, music to my ears. Not the report as much as VACATION COTTAGE. The very best RX. As far as the report goes at least quite a few of the numbers came down and he is doing better. When you get back home other numbers may have come down more as well. Looking for a better outcome after a wonderful vacation! Have a great time, you both so deserve it.

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 a Different Treatment

Hi, Linda ,
Can you ask your doctor why not Gemzar+ oxaliplatin  instead of  just Gemzar alone.?
Unless pre-exist condition preclude the use of oxaliplatin(check out the contraindications) for oxaliplatin and you will find out.
Gemzar alone seems too mild a regimen when switch from FORFIRI. I had Gemzar for 18 months after the 1st resection with no tumor and clean margin.
As you know ,I am just like your husband, a patient,and not a doctor.

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: Time for a Different Treatment

Hi, Linda ,
Can you ask your doctor why not Gemzar+ oxaliplatin  instead of  just Gemzar alone.?
Unless pre-exist condition preclude the use of oxaliplatin(check out the contraindications) for oxaliplatin and you will find out.
Gemzar alone seems too mild a regimen when switch from FORFIRI. I had Gemzar for 18 months after the 1st resection with no tumor and clean margin.
As you know ,I am just like your husband, a patient,and not a doctor.
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: Time for a Different Treatment

Thanks Percy.  The doctor dropped Oxaliplatin from the FOLFORONOX because the neuropathy was getting pretty bad.  He suggested trying Gemzar alone and then adding Oxaliplatin later if necessary.  My husband seems comfortable with this approach but I also have some concerns about it and will discuss it with the doctor again next week after I have done a little more research.

Re: Time for a Different Treatment

Hi,
H ow about Gemzar+ carboplatin?
Interventional radiologist consult for like IBRT if needed?
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: Time for a Different Treatment

Percy, what does IBRT stand for?  Is this treatment effective for diffuse disease.  The most recent scan referred to "innumerable tumors" in the liver.  By the way, my husband is feeling much better than he was.  Even the indigestion and lack of appetite seem to be diminishing.  He's getting labs again tomorrow and I'm hoping for another drop in bilirubin.  I really think a lot of these problems were caused by infection.

15 (edited by PCL1029 Tue, 25 Jun 2013 21:39:42)

Re: Time for a Different Treatment

Hi, Linda
I am sorry, it should be IMRT instead of IBRT, my mistake.
IMRT will not be the choice of multiple small and diffused tumor.
The logical choice is the radioembolization and northwestern university here in Chicago is the pioneer in this field,get a second opinion from their interventional radiologists. But, listen carefully of what they will recommend and ask questions.
I, personally at this point still neutral on this treatment. It looks good on paper, but in reality,like members on this board who had done radioembo, the results did not match what the medical journals reports.
It may be due to the patients selection;it may be due to comobidity,it may be due to residual radiation ( 3mm in diameter from manufacturer info. Rather then 3-20 mm as mentioned in some articles I read.) And thus the liver will accumulate more radiation than just 3mm of radiation for each bead. And this may be one of the reason I have a lot of concern about radioembo. Liver is a very sensitive organ to radiation. Good 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.

Re: Time for a Different Treatment

I am trying to obtain crucial information about this disease and treatment options as the family caregiver--not the patient-- and I am running into brick walls with some of the leading doctors recommended on this website. They will not speak to me, discuss the case, review scans or reports that I have available from --and full approval (HIPAA) of the patient to send out--  unless the patient is comes to his/her office in person. That is not possible. Thus, aside from this website and info on the web, how can reliable, detailed information be obtained if not from the leading doctors and their associated hospitals? Please advise.

Re: Time for a Different Treatment

Judy,

I'm sorry you are having problems getting information.  I don't have any answers for you, but hope that someone will be here soon to give you some suggestions.   You may want to repost this by starting a new topic, as it may make it easier to find.  My husband was the one with CC and as his wife and caregiver I never had a problem getting any information or answers to questions.   I'm sure it is very frustrating to say the least.   Hope you can get some answers soon.

Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: Time for a Different Treatment

Hi,
U of Chicago charged me around 1400.00 to have a medical oncology consult which my insurance had paid for.
In short, there are no free lunch even if you know the doctor yourself. They have to make a living . It make no difference if you are a patient or caregiver.
Most of the free consultations I got eventually leads me to an office/ institution visit down the road even I met the doctors  several times in the last several years and they knew me.
The only free consultations I got was from my peers at work in a hospital settings.
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.