My web site is devoted to medical and treatment information about this rare cancer. My blog is devoted to sharing what has been the more difficult part of the journey for me, the emotional and spiritual road I've traveled as a rare cancer survivor.

Tuesday, November 30, 2010

Getting Ready For Surgery

I've gotten several emails in which patients awaiting cytoreduction surgery and HIPEC have asked me how to best prepare.  We are often told, as I was, to expect a 12 hours surgery, to be in ICU for a few days post-op and to be in the hospital for about 2 weeks.  We've all heard horror stories of those who have had many complications and who have been hospitalized for up to a month, and who have had very long recovery periods.  Much of the length of hospital stay and probability of complications is related to the extent of surgery needed, general health before surgery etc.  I had few abdominal tumors, so probably required less surgery than many others.  My surgery, expected to be 12 hours, but was instead 5-6.  I did not need to go to ICU post-op, and was discharged in 6 days, not two weeks.  My recovery was not extended, I was back to doing what I normally did (albeit with some pain) in 2-3 weeks.  I also have a very high pain threshold, which also served me well.

There are things we can do though, to speed our recovery and prevent complications.  As a nurse, I know that those who don't move post-op have more complications.  So I was insistent on getting out of the bed as soon as possible.  Within 36 hours of my surgery, I was walking the hospital halls almost all day, every day.  Walking helps bowel recover normal function, prevents blood clots, promotes wound healing and prevents pneumonia.  When I wasn't walking, I was sitting in a chair in my room, I only went to bed to sleep.  I had to walk bent over for awhile at first as standing up straight made my abdominal incision more painful.

I personally didn't like the morphine PCA they gave me at first...one of those things where you press a button to deliver morphine when you are in pain. Morphine made me feel drugged....and nauseated.  And nausea and vomiting is a painful thing to do when your abdomen has been cut open.  As I was a nurse, I knew of a drug that was not narcotic, Toradol.  It is, in essense, a powerful form of IV medication for pain.  I asked my morphine be stopped and replaced by periodic Toradol injections  Toradol was so much more effective for my pain, and I didn't feel "drugged" or nauseated.   I was very lucky I had a physician who catered to my needs and suggestions.  Toradol can only be used for a few days, so after Toradol, I took ibuprofen for pain.Narcotics can depress breathing and slow bowel function also,so I felt I was better off without them.

I also brought books and a CD player to the hospital.  I needed things to distract me from my status as a patient, to distract me from pain.  Some hospitals now have internet access....you can bring your laptop and keep in touch with people if cell phones aren't allowed.   Many also use the Caring Bridge site and have a person designated to keep the site up dated, so family and friends can get updates and you or your loved ones aren't inundated with telephone calls while you are in surgery and recovery.

I also brought soft elastic-waisted pants and shirts as I didn't want to wear a hospital gown, so I was in street cloths most of the time.  I also bought something called an abdominal binder...it is like a very wide elastic belt you can wear to splint your abdominal incision that was very helpful to me after I was discharged (about $20 at Walgreens).  They used to be commonly used for patients with abdominal surgery, not sure why they aren't commonly used now.  It may have been sold at Walgreens as an elastic back brace, but it worked well as a binder.

It is also important to take several deep breaths and to cough every couple of hours; if coughing is painful, you can hold a pillow against your abdomen when you do it.  If you are in bed, you can do ankle exercises to help blood circulate in your legs to prevent clots from forming.

When I got home, I had no bowel or stomach issues, just didn't have much of an appetite for awhile, so I ate frequent small amounts of high calorie food (egg nog, milk shakes, ice cream sundaes).  My appetite did return and I gained back all of the weight I lost with my surgery (about 20 lbs.).

If anyone else has other suggestions as to what helped them through this surgery, feel free to post in the comments here!

Sunday, November 14, 2010

An Educational Post

I hope you all will bear with me here....this is an educational post, but things we all need to know.

Many of us have sought HIPEC (surgery with heated intraperitoneal chemotherapy treatment), only to be told by our local oncologists and surgeons that it is "experimental".  Insurance companies deny coverage for the same reason. We currently don't have a universally accepted standard of care for appendix cancer. 

In the medical world, "Standard of Care" is paramount.  Insurance companies are willing to cover treatments that are  "Standard of Care".   In some ways, breast and other cancers have it made; there is a "Standard of Care" that is accepted throughout the medical and insurance community, in a sense an agreed upon and accepted "recipe" for treatment of their cancers.  Insurance companies and physicians alike recognize the standard of care for other cancers.  Every cancer treatment facility recognizes the accepted standard of care and strives to  provide that standard care for a particular cancer.  If there is an accepted standard of care a facility cannot provide, it is obligated to refer a patient to a place where they can receive the standard of care, or possibly face legal the implications of denying that standard care to their patients.

Much of standard of care is determined by FDA approval.  This comes through clinical trials.  A Phase I clinical trial uses a new treatment on patients for the first time, not so much to see if is successful in treating the cancer, but to see if the treatment is safe and not harmful.  If a treatment passes Phase I clinical trials, it goes to Phase II clinical trials, to determine if it might be an effective cancer treatment for a small population.  If it appears it might be successful, it is tested in a larger Phase III clinical trail and compared to the existing standard of care.  If the treatment proves to be more successful than the current standard of care in a Phase III clinical trial, the new treatment may be approved by the FDA and become standard of care for that cancer.

For cancers that have spread into the abdomen, there really are no phase III clinical trials to prove the effectiveness of HIPEC.  Some insurance companies have refused to pay for HIPEC as they state there are no Phase III clinical trials proving it's effectiveness, though IV chemo alone for abdominal cancers does not seem to offer any curative potential or long-term survival.  Not all HIPEC patients survive, but in my own experience with over 1000 appendix cancer patients, I personally know of long term survivors who have had surgery and HIPEC, but none who have survived long-term with chemotherapy alone.  But it's just my observation, not proven by a clinical trial.

There is currently a Phase III clinical trial in progress for colon cancer patients whose cancer has spread to the abdomen.  Half will receive surgery with  HIPEC, half will receive the current standard of care, IV chemo only.  Fortunately, those in the IV chemo only arm whose cancers progress will be able to transition to the surgery/HIPEC arm.   It will be a victory for us if HIPEC is shown to be superior to chemo only, it may become  FDA approved and no longer an "experimental" treatment. It may become standard of care.

Another thing that is against us in seeking a standard of care for surgery and HIPEC is that there are very many small variations in the treatments by the different specialists.  It might be a small variation in the temperature of the heated chemo, or the concentration or type of the chemo used, or whether the HIPEC is done via open or closed method...there are several variables.  This plays against "Standard of Care".   We really need all of the specialists to be on the same page.  We need a "recipe" for our cancer.  We can't have a "recipe" if everyone is doing it just a bit differently.

If the current Phase III clinical trial proves to be beneficial vs. IV the chemo only arm, that will be in our favor. There will be scientific proof that surgery and HIPEC has better survival rates than IV chemo alone.  But we need for all of the HIPEC treatments to be using the same "recipe".  We need research to show one HIPEC treatment to be superior to another, we need clinical trials,scientific research, to prove that.  We need a universally agreed upon "Standard of Care".

Dr. Esquivel recently founded an organization that seeks to standardize a HIPEC standard of care, the American Society of Peritoneal Surface Malignancies.  I was very privileged to asked to be on the board of his new organization and readily accepted.  Many of the prominent HIPEC specialists have joined his organization; they are listed on the web site in the Member Directory.  The specialists treating our cancer need to all be on the same page.  We need unity.

Monday, November 1, 2010

I'm being arrested!

I got a call today that said a warrant has been issued for my arrest.  That got me for a minute!

Turns out I am being arrested for a good cause :-).   The call was actually from the Muscular Dystrophy Association.  Someone gave them my name as a prominent citizen (didn't think I was?).  So I'll be one of those people who are locked up trying to make bail to raise money for the MDA.  I'm being picked up at my house on Dec. 1st (a police car?) and transported to jail.  I'm told they will take my mug shot, and they promised to feed me while I'm locked up.

I agreed as in the past I took care of a boy with muscular dystrophy, I did private duty at his house.   He was a teenager and had been in a wheelchair since the age of 5.  When I took care of him he had lost the use of all of the muscles in his body except for his right thumb.  He was unable to breath in his own, so was on a ventilator.  But he was totally awake and conscious.  He was able to control his electric wheelchair with his working thumb.  His father also made a button he could press with that thumb that sent pressurized air over his vocal cords since he had a trach.  That allowed him to speak (his dad planned to patent the device, don't know if he ever did).  He was totally dependent on others for his care.

So it is for a good cause!  My daughter doesn't want me to do it....she's afraid she'll have to pay my bail if  one else does (she's tight with her money)!

If anyone wants to donate to "bail me out", you can donate here at my MDA website.  Be sure to click on the "news" video while you are there....it's kind of fun!

Thanks in advance!
Carolyn