Topic: the month of february - surgery and radiatio

Dear all my friends,

I hope this is the right place to post my recent experiences, which I hope might help someone else. Plus, you might wonder where I have been - - too tired to write much, actually, until now!

Diagnosed in October with ICC, one large tumor (6.8 cm) and two small ones (~2 cm) and many little ones, I went on gem/cis (dose 1000/75 mg) for four 3-week cycles and they all shrank and the tumor markers went way down. I experienced all the usual insults of chemo plus some scary neuropathy in my hands (eek! I am a violinist!)

Dr. Kato had originally wanted to do a chemo-radiation-chemo "sandwich", but with such great shrinkage decided in early January to "throw in" a little surgery. Keep it in mind that this was never billed as a curative surgery because of all the little tumors, but a palliative surgery to get rid of as much tumor burden as possible. So on January 31 (three weeks after the last chemo) he removed the big tumor and all the left lobe, leaving the right lobe with its many small (less than .5 cm) tumors. There has never been any question that I am "behind the eight ball." There had been one of the medium size tumors in the right lobe but it had shrunk to almost nothing and Dr. Kato wanted to leave a good piece of liver so I could get through everything. My liver enzymes have never faltered for even a moment since I was diagnosed.

The main idea was to hit me with everything as big and as fast as possible, so when I was only three days out of the ICU from the liver surgery they did a liver angiogram and two weeks later on February 20th they put in the y-90 spheres. (Both procedures do hurt btw and are uncomfortable but fascinating if you ask for and get your own monitor to watch). The radio-oncologist, using a formula that determines the "payload" of radiation depending on your size and health and whether or not you had previous radiation or chemo, picked a dose and then a reduction. He wanted -20% and I argued successfully for only a 10% reduction from the maximum. I am totally nuts I think. For two weeks I ran temperatures up and down - never high enough to worry about infection but bothersome and miserable - and felt sick as a dog. I could not get warm to save my life unless I was sweating all over. I also did not eat for at least a week. It was just too much. Still recovering and suffering from the gigantic but gorgeous abdominal scar from Dr. Kato's work, I had plenty of narcotics but I have to say it was a dark February for me and I am really healthy and strong (except for this little cancer thing!) In case you wondered, Dr. Kato says he's never done this before. I guess I am the guinea pig!

As if that was not enough, in keeping with the general plan to compress the schedule way tighter than the conventional wisdom, we went back to the gem/cis chemotherapy at a slightly reduced dose (1000/50) just 2 and a half weeks after the radiation. A week later I basically had no platelets, no white blood cells, disaster. I think my body had just had enough for the moment. So I decamped to Cancun for a week and just got back last night feeling much better, stronger from fighting waves and walking, healthy from such good food, and happy to be warm at last. Feeling good, if I do say so!

In two days we go back to chemo again. That is my plan for now. Scans are not possible for 8 weeks after y-90 so the next news I will have will come in late April. The goal was to get rid of as much tumor as possible and set this ICC back as far as possible. I have no lymph node involvement or metastases outside the liver. My personal goal is to get into some kind of immunotherapy trial because I think that is the future. At least two surgeons/experts that I talked to on this journey explained to me that they believe my body is fighting this cancer everywhere in my body except in the liver. Don't know why.

If anyone has any questions about the surgery or y-90 experiences, please ask. Bless you all and I will let you know how the next scans are - - what kind of wild-looking liver-thing I have now! Oh, and I think Dr. Kato does not like straight lines on a body. He told me the look of the scar is very important, it must be aesthetically pleasing. Mine is so beautiful, I am very proud of it. So maybe he is onto something. Anyway, the medical gist of all this is the use of surgery not for curative purposes but for palliative purposes, and the aggressive compression of a usual treatment schedule.
Holly

Re: the month of february - surgery and radiatio

OMG, Holly, you ARE a SUPER HERO or a glutton for punishment. LOL
What a courageous lady you are and then to go to Cancun, good for you!  I am so elated that you are finally doing better.  Oink, oink! We do thank you for being a Guinea pig and I am excited now to hear about the next scan results. As far as being behind the 8 ball....I would take that pool cue and knock it right off the table! Keep feeling better and thank you so much for the interesting update. You are an inspiration to our Board!  Much love coming your way.

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: the month of february - surgery and radiatio

I note a sense of humor still there.   Am sure the darkness appears but your good attitude is helping you.  Many prayers are with you.

Re: the month of february - surgery and radiatio

Hi Gregg, just want to say, how right you are. Believe it or not humor is what got Teddy and me through it all and a good attitude is so important as it is less draining on the body. We really do have some comedians on this Board and a good thing too.
Hope you are doing well.

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: the month of february - surgery and radiatio

Holly: you are amazing!! Please, please keep us posted!! I'm jealous you went on vacation: I'm always afraid to travel too far from my drs "in case"...
I am thrilled beyond words with your report: no doubt with this attitude you will kick the $hit out of cc.

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: the month of february - surgery and radiatio

Kris don't forget you have an open invite to come here and I have excellent Doctors if needed. Or, remember I am going to Milwaukee May 28 - June 5 and staying at a lake house and you are most welcome to come for R & R. I have Docs there too.

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.

7 (edited by marions Sun, 31 Mar 2013 02:55:27)

Re: the month of february - surgery and radiatio

Holly…you have the most beautiful way of formulating your thoughts and ideas into written form.  Though you are still recovering from major surgery and subsequent treatment, you continue to enlighten us with your knowledge and determination. 

Personally, I consider palliative care to be the means of alleviating symptoms, but not excluding the hope of a cure similar to that of chronic diseases.
The connection of immune disorder and the development of cancer have long been established and warrant aggressive studies.    http://www.ncbi.nlm.nih.gov/pubmed/12860163

It has been established (in some instances clinically documented)  Autiommune or Surpression Immunitherapy may be effective in the various applications of Dendritic cell-based immunotherapy, T-cell adoptive transfer, Autologous Immune Enhancement Therapy, Genetically engineered T cells, Immune recovery, and Anti-microbial immunotherapy. Often time’s specific chemotherapy added to Autiommune or Surpression Immunitherapy has shown to bring positive results.
Our Willow had mentioned that her mother in-law had been treated with  BCG immunotherapy (Bacillus Calmette-Guerin) which is a common treatment for non-muscle invasive bladder cancer. 
I wish for continued success, dear Holly and for your recovery to speedy and uneventful.
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