PPC

Hi Lori,     I am sorry that you are having so many problems and I do hope I can give you some information that might help.  I did not have the same type of cancer that you have, however, I had inoperable cancer 36 years ago and I went to M.D. Anderson Cancer Center in Houston, TX.  This is the number 1 cancer center in the country.  It might be worth a phone call to inquire what they do for your type of problem.  I wish more people would find this clinic & hospital early in their diagnosis.  You can check them out on the Internet; they do have a website.  www.mdanderson.com.  I wish you luck and if you need to contact me my e-mail address is:  

     Gerry

On 4/12/2008 Sedonalady wrote:

Hi Lori,

Lets talk about the good things.  Your husband, as
like me with my wife, is being your advocate.  As like me, he probably
holds a full time job. It's not easy but he needs to get on line and
start learning the vocabulary of the new world you have entered. Use
GOOGLE to search your cancer and choose only sites from "well known
places". If your run across a word you don't understand, google it.
Keep lots of ink in your printer and print up the pages you find. Your
neighbor can assist in that learning curve. Run your findings by her,
wow, what a blessing. As to your "instincts" TRUST THEM!!! You were
right all along. When you all visit the docs, start your conversation
by giving the healthcare providers unequivocal permission to speak to
your advocates and request your advocates to talk to the healthcare
providers. Prior to you visit, make a list of questions, it may be a
very long list. Under NO CIRCUMSTANCES should the healthcare provider
not clearly answer your questions. Under NO CIRCUMSTANCES should the
healthcare provider make you feel rushed or intimidated. This will be
the hardest part for you and your husband but this is where your husband and
neighbor can be of immeasurable assistance. This is also why
you/husband need to be educated in the vocabulary and potential
treatment plans. Trust your "BS" meter. The healthcare providers have
the responsibility to make YOU feel comfortable. If you already have a "feeling" that this provider will not be as you expect, have a
plan B. Start looking for a second opinion NOW! get it lined up. 

Things
to do. Get a definitive diagnosis, not a guess from the doctor. Western
medicine really shines in diagnosing. Ask for the pathology report from
your previous surgery. Ask for the pathology report from your
paracentesis (abdominal fluid tap). Pathology reports/slides are the
holy grail of your treatment plan. Understand EXACTLY what cancer cell
you have. This correct info will drive your treatment plan. Insist on a
PET/CT scan immediately.

Watch you blood lab results.
Particularly you red and white blood count. Watch you "liver enzymes"
(google it), watch your protein counts (albumin, total protein). Watch
your kidney function tests "creatinine" Drink plenty of fluids and keep
well hydrated. Use this site

http://www.intmed.mcw.edu/clincalc/creatinine.html " target="_blank" rel="nofollow">http://www.intmed.mcw.edu/clincalc/creatinine.html " target="_blank"

to
monitor your kidney function. The "calculation" should be greater than
60. Drug dosing is dependent on how well your kidneys are working.
Doctors always assume they are functioning well. Make sure you KNOW
they are functioning well. 

PPC is very similar to ovarian
cancer and the treatments are similar. My research suggests that the first line
of treatment is intraperitoneal chemotherapy. (Google it). See what
options your providers offer.

Nutrition and supplements are important and very often overlooked. This site has great info in that regard. 

3
years ago, when our journey began in earnest, I ran across a person
Francine Milano, online, who had PPC and received treatment and
recovered. I haven't written to her in awhile and I'm not sure that the
address remains active but she was of enormous strength to me during
our "dark times". Try writing to her.

milano@electrobytes.net

Although you may have been delayed and misdirected by doctors, wife has been misdirected and mistreated by many "doctors". The time to act is now, don't allow them to delay your treatment, period!!!! We too were
angry. You will both feel overwhelmed and angry. Recognize it for what
it is and use that energy to meet your goal of tackling this cancer and
"kicking its butt". It is doable.

Although it is your journey and it is down
right frightening, there is an enormous community here to help you. Use
all of your resources and courage.

As for us, another leg of our journey starts tomorrow, Sunday.
We are traveling from our home in Sedona AZ to MD Anderson in Houston
Tx for another opinion and probable treatment. My wife of 26 years has
had 7 different chemo's and 2 major surgeries. She is an incredible
person and my best friend.

Please write as our discussion is therapeutic for me as well. 

I included some links that I found helpful to me. Hopefully they will help you too. 

Regards

Jim S

http://www.mnovarian.org/faq_recurrent_disease_treatment.htm

http://www.intmed.mcw.edu/clincalc/creatinine.html " target="_blank" rel="nofollow">http://www.intmed.mcw.edu/clincalc/creatinine.html " target="_blank"

 http://www.hipectreatment.org/documents/hipec.php

http://www.cancer.gov/cancertopics 

http://www.cancer.gov/newscenter/pressreleases/Ipchemotherap

Hi Jim,    As I was reading your message I noticed that you are going to M.D. Anderson Cancer Clinic.  I have been a patient there for 36 years.  I just came back from TX Thursday evening.  My youngest daughter is now also a patient at MDACC.  My family has a genetic disorder called Gardner Syndrome (FAP).  We develop polyps in our colon and sometimes there are other cysts as well.  I have had two types of cancer: one in 1971 and then rectal cancer in 2005.  I have had eight abdomenal surgeries and open heart surgery last Oct.  Then I had what I consider miscellaneous surgeries.  At any rate I want to wish you and your wife good luck and much success with your trip to Houston.  I hope that they have some remarkable treatments for your wife.  You will find MDACC an incredible and very large community with very talented physicians with specialties in every area.  Once again, good luck!  Gerry   

Hi Gerry,

Yes, I agree with you. MD Anderson proved to be a very good thing for my spouse. She has improved greatly since our visit. I agree the knowledge of our MD Anderson doctor stood above the 13 other oncologists we have visited over the years. I would encourage all who need cancer services to consider this one. We have a return visit scheduled in July. Hopefully, good news will follow.  We both wish you and your family the best. I'm glad that you and your family have found good care.

Regards

Jim S. 

Jim,                                                                                               Thank you for your kind wishes.  As you know, it is encouraging and comforting to communicate with individuals who understand the stress that we experience when threatened with cancer.  I am glad that your wife is showing improvement and I hope that she continues to improve and is successful in her journey to recovery.  GOOD LUCK!                               Gerry