Topic: Not new but just discovered this site

I was diagnosed with Stage 4, Metastised Bile Duct/Gall Bladder carcinoma on 8/28/12, just after my 65th birthday.  I am a otherwise a very healthy and active person.  The cancer had spread along the peritoneum causing problems with my colon, stomach, lungs, etc.  The colon problem is what led to the cancer discovery by my GI doctor.  Exactly where the cancer has spread is undetermined but as the doc who did the biopsy (needle in the liver) said "you have quite a mess in there".  The CT's showed a lot of ascites all around the Peritoneum.

I have been through 8 cycles (cycle = 2 weeks and one off) of gemzar-cisplatin which was complete at the end of February.  I am just finishing a 6 week holiday and start back with chemo tomorrow with Carboplatin replacing Cisplatin.  The Cisplatin side effects necessitate the change.  Neuropathy in the feet, legs, and fingers are the main problems.  These started to show in the 7th cycle and my feet are pretty numb at this point.  I am still walking to work and have generally been able to stay active although I had to stop some things that were too taxing.  I think staying in motion is a good thing and people who know me have a difficult time believing I have cancer and am in chemotherapy.

My progress with chemo has been "amazing" in the words of my oncologist, Dr. Mohamed Bazzi of Antietam Oncology in Hagerstown, MD.  I am also seeing Dr. David Cosgrove at Johns Hopkins for second opinions, who has supported the therapy plan developed by Dr. Bazzi.  The CA 19-9 marker has gone from 6709 to normal (less than 37) over the course.  The CT scans also show a lot of reduction to the point I can now see the Gall Bladder where initially that was just a big blob.

Dr. Bazzi arranged through one of the pharmaceutical companies for a DNA analysis but that was disappointing.  The main problem being that there are very few approved gene specific therapies.  It would be extremely lucky to hit one of those such as Her2, but not in my case.

The main issue right now is what to do next.  I have decided to keep up with chemo as long as it is effective and I can stand it.  Dr. Bazzi says that eventually the chemo will no longer do the job and we will have to find another therapy.  My hope is that something becomes available between now and then.

Re: Not new but just discovered this site

Dear Walt, welcome to our remarkable family and you have come to the right place. We are all about HOPE and Miracles and here is hoping something new comes along. I can't even fathom CA 19 dropping from 6709 to normal, that is astounding! There are more options now than even a year ago. I am also happy that you have already received a 2nd opinion. Please keep us updated as we truly care.

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: Not new but just discovered this site

That is one heck of a drop in tumor marker! Means chemo really works for you. When one "cocktail" either stops working or causes too many side effects, you just switch to another. Good luck with finding some other therapies, too, and keep us all posted. Welcome to the family.

Re: Not new but just discovered this site

Glad to hear that the chemo is working for you.  I started mine last week Thursday.  Unfortunately, I went into the hospital Monday night with a high fever and chills.  A ct scan showed an abscess by my liver so I have a drain and am receiving IV antibiotics.  Also my white cell count bottomed out.  No chemo this week, hopefully they can adjust the dose and I can start up chemo again next week.  I like to think that this means I respond well to this chemo.
Again, welcome to the group and I am glad treatment is working for you.

Re: Not new but just discovered this site

Stan, sorry to read about your "bump" in the road. Let's hope it was the CC being very angry that you are trying to kick it to the curb! Feel better quickly and lets continue with your cocktails and really kill that monster. BTW, infections just seem to go with the territory. One more reason we have only Professional Patients!

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: Not new but just discovered this site

Thanks for the encouragement and yes the strong positive result from chemo was a big boost.

One thing I have learned from all this, and my doctor says something like this every time I see him, the disease is not one thing and comparisons are for the most part meaningless.  Dr. Javle mentions this in his presentaion on this site, that this is one of the big frustrations in the research for cures.  How do you extract meaning from a trial when there are multiple diseases in the study?

My version of the disease did not originate in the Liver although the Liver is involved. This apparently affects how and where it moves and I suppose the efficacy of the chemo.  I think the point of this is to keep after it and if one approach doesn't work, go another way.  I recently had a surgical consult at Johns Hopkins and he predicably told me I was not a candidate for that.  Then I recently read an article about a lady who got a surgeon at Stanford to operate multiple times and this has apparently prolonged her life.

I am also extremely sure that keeping active is a big part of this.  It would be very easy to collapse on the couch due to chemo affects, but maintaining physical activity seems to enhance the immune response and I see a common theme with this regarding the so-called miracle survivors.  They are all physically active.

Re: Not new but just discovered this site

Walt, My Teddy worked up until 4 months before he passed and he golfed (if one can call that strenuous exercise) until 3 months before. Staying active is all part of a good attitude which is all part of really helping ones self and you certainly have that. You never know how strong you are until "strong" is the only choice you have!

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: Not new but just discovered this site

Yes I agree.  I didn't mean to pontificate as I'm certainly no expert in this field.  Cancer patients, including myself, are looking for others that point the way for them.  Nothing would make me happier than to see a case like mine that points the way to the future.  I'm still waiting.

Re: Not new but just discovered this site

Don't ever feel you are 'preaching' as you never know when you are going to say things that will benefit others. I have already seen you post where I say to myself, that was a good idea! So never draw back you are already helping others and a terriffic addition to our Family.

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: Not new but just discovered this site

Walt, congratulations on your success ! I agree keeping active seems to give you more energy. Humans have evolved for thousands of years without all the comforts we enjoy.I read a study that estimated the average distance walked daily by humans before 1900 was 7 miles. We have it so soft today we ride in heated or cooled autos and so on, walking brings us closer to how we have evolved. I wish you continued success, Pat

Re: Not new but just discovered this site

Walt and hercules....Physical activities (within reason) during cancer treatments are recommended at all medical conferences I attend.  It is nice to hear you confirm this.
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: Not new but just discovered this site

Some links on exercise and cancer that may be of interest -

Physical activity during and after cancer treatment

http://www.macmillan.org.uk/Cancerinfor … ation.aspx

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.