"ing930"~Primary Peritoneal Cancer info 4U~Heated Intraperitoneal Chemo may be option (HIPEC)

LorettaMarshall
LorettaMarshall Member Posts: 662 Member
in Peritoneal Cancer #1

[This is "ing930's entry of February 4, 2018.  https://csn.cancer.org/comment/1616042#comment-1616042 - ing930 - Primary peritoneal  Feb 04, 2018 - 12:44 pm - Just diagnosed primary peritoneal stage4 B. I need to tall to survivors!]

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Hello “ing930” –

First let me say that you have placed your letter in the wrong place.  This is a group of “old” entries and this column is actually not active.  If you place your cursor on any one of the pictures of those who are posting in this particular forum, you can see the “last time” they posted anything here.  And I certainly don’t want your entry to be ignored.  So for that reason I’m placing your entry on a “new topic forum.”  If you will come back to the “new link” to ask further questions, then we can have a “running” series of exchanges between you and anyone else who chooses to share their stories with you.  As “newbies” we are all “out on a limb” and hope that we can find someone else to put a safety net underneath. 

Well you’re talking to a survivor of Peritoneal Carcinomatosis first diagnosed in November of 2012.  A SECOND OPINION at the University of Pittsburgh Medical Center also conducted exploratory surgery, and a PET/CT scan revealed cancer in both my ovaries.  So even though the cancer was first discovered in the peritoneal fluid, we never bothered to try to figure out which came first.  It was already Stage IV.  You can read more about my own case by clicking on my “about me” page.  Now let’s be honest—any time we are diagnosed with cancer of any kind, it is scary.  Secondly I’m not sure if you are a male or female, because cancer in the peritoneum can originate from more organs than just a woman’s ovaries.  So I won’t go into detail about the female anatomy because it may not pertain to you.

Since you are not the first one to ask to know more about this cancer, I will direct you to a previous answer I gave to “Blue24”.  It’s very detailed and will tell you more about this particular cancer diagnosis. 

The reference for that entry is:  https://csn.cancer.org/node/306613

As for my own experience with this cancer, I can tell you that initially I had too many tumors to be eligible for a “Cytoreductive Surgery” (CRS) so UPMC told me to come home, have chemotherapy and then they would reassess my cancer.  So I returned home and went through a 6-regimen of Carboplatin/Paclitaxel (Taxol).  It reduced my numbers enough to be able to have the CRS.  In that surgery, since my uterus and appendix had been removed previously, they removed all the other organs to which the cancer might spread that were deemed “NON-ESSENTIAL.”  So my ovaries, fallopian tubes, gall bladder, spleen, omentum, and a large portion of my intestines were removed.  This is major surgery although I was already informed that it would NOT be curative. Surgery was July 1, 2013.  During the time of hospitalization I developed a major infection and some other difficulties causing me to have a 42-day stay.  And I will tell you that in the beginning, I would wonder if I was going to “make it!”  But here I am, and it’s now February 2018.  Furthermore, God has let me beat the odds because usually one in my condition rarely lives over 3 years, and yet there are exceptions to every rule.  Now depending on the extent of your cancer things will not be the same.  But in my case, the chemo of choice was Carbo/Taxol was first recommended treatment for both PC and OC.  Now for all I know, you may have cancer that has metastasized to the Peritoneum from your colon or whatever, but I will share with you some extensive references about PPC.

In 2014, I had targeted radiation on 3 cancerous nodes on the Caudate lobe of my Liver.  Then in years 2016, 2017 and now 2018 I’ve had more chemo.  Each regimen has consisted of 6 rounds—each treatment lasting for several hours at the lab—each one 3 weeks apart.

Since I don’t know what you have been told already, I know that usually chemo is prescribed.  If you’ve never had chemotherapy before, you can reference:  http://chemocare.com/ and choose the drugs your oncologist has prescribed, assuming he/she has and that you’ve consented to take it.  This will give you side effects and helps on how best to cope. 

I began my last round of chemo on December 28th of 2017.  I will tell you that my oncologist said most likely another chemo would be more effective because too many treatments of the same chemo tend to make the patient immune to that drug.  The cancer is smart enough to rear its ugly head another way.  And I will tell you that since I am double my life expectancy, and a Christian, I told my oncologist that I am not willing to take another drug that is more toxic and has also a limited effect.  I’ll just go with the “devil” that I do know (Carbo/Taxol) rather than step down the ladder.  To each his own.  My oncologist is fantastic—I have no complaints.  I’ve researched my own cancer and have prayed about my own decisions, and this is all I’m willing to do.  But each one will have to do what they believe is best—provided they have done their homework—and are taking a “hands-on” approach.  I’m not the kind that asks no questions.

And by all means, have a SECOND OPINION.   The link I will share with you below is a shocker.  Mayo Clinic gives us fair warning about only having one opinion.  Finding a doctor close to home, or just liking your doctor that you’ve known for years should NOT be the first criteria.  Now I’m aware that sometimes there are circumstances that one must work around, but if you have good insurance, please take advantage of it. 

And one more thing, there is also a HIPEC treatment that many PPC patients may be eligible for.  In my condition, at UPMC, the heated intraperitoneal chemo treatment was available, but depending on the patient’s extent of cancer, it isn’t always recommended.  And although I was told I might be having that treatment, when I awoke, the surgeon had not utilized that option.  I was disappointed because I know that in clinical trials, patients who receive the HIPEC treatment as part of their cytoreductive surgery are shown to live longer.

But for the time being, I think you have more than enough info to make you aware of how this particular cancer is treated.  And although I am feeling fairly well today, it may be that I don’t feel well enough to answer.  I’m not new to side effects from chemo, but one never knows how they are going to feel from day to day.  But I have to say, each person is an individual and you might live even longer than I have so far.  I firmly believe that my time is in God’s hands.  And so I say, because I believe Psalm 139, I will not live one day longer nor die one day sooner than my allotted time.  As a believer, I am taking the long look, because many days down here will make one wonder if they will live another day.  I also know that God says He will never leave me or forsake me, and that goes for anyone who chooses to place their faith in Him.  That assurance gives me peace of soul even though my bodily organs seem at war with one another.  It is the Lord’s peace, presence and power that give me a positive attitude and “most every day”, I am at peace.  Any time I start thinking about times when I will no doubt feel even worse, I rob myself of the peace for the day I do have—that being TODAY.  Now I meant to be short with my reply, and I have gone on and on already, but it’s “easier said than done”—let’s be honest. 

So for you I’m hoping that you will search out the best doctors, have a second opinion, do your own research, understand this cancer, and “go for the most intense treatments your body can withstand.  We all know chemo is brutal, but we have to keep our minds on the final outcome.  “Nothing ventured—nothing gained.”

Naturally, we all wish for the best for everyone that writes here, and many express their sentiments and pray for their newly diagnosed “friends.”

Sincerely,

Loretta

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1.       https://csn.cancer.org/node/306613 - (My in-depth answer to “Blue24)

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2.     http://www.gomn.com/news/mayo-clinic-says-get-a-second-opinion-first-ones-are-frequently-wrong/

“MAYO CLINIC SAYS GET A SECOND OPINION – FIRST ONES ARE FREQUENTLY WRONG…”

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3.      http://www.upmccancercenter.com/cancer-care/surgical-oncology/koch-regional-cancer-therapy-center/treatments/hipec?&gclid=COKrsOvtyNMCFV6BswodqugDQg

“Hyperthermic Intraperitoneal Chemoperfusion (HIPEC) Treatment

Many tumors too advanced for surgical removal remain confined to a single organ or region of the body. Hyperthermic intraperitoneal chemoperfusion (HIPEC) is a surgical technique that we use to treat these types of tumors.

What Can I Expect During Hyperthermic Intraperitoneal Chemoperfusion?

In HIPEC, our surgeons may first debulk, or partially remove, the tumor prior to treating.

  • Afterwards, the surgeon makes two small incisions and inserts tubes:
    • One to pump the heated chemotherapy solution into your body.
    • One to circulate the fluid back to the heating equipment.
  • Once the treatment begins, the temperature in the chest cavity rises to between 105 and 107.6 F (40.6 and 42 C).
  • The chemotherapy solution circulates for several hours to kill the cancer cells.
  • The pump is turned off to allow the treated region to cool to normal temperature.

 Then the surgeon removes the tubes and temperature probes, closes the incisions, and sends you to recovery…”

4.      http://www.hipec.com/ - 4:38 minute video explaining HIPEC treatment for Peritoneal Cancer\

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5.       https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3076138/

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6.      http://csn.cancer.org/node/301620 - Brian’s inquiry re Mom’s Peritoneal Cancer and my answer here: 

7.      http://csn.cancer.org/node/301646

“Hello again Brian,

This letter is an answer to what I promised you earlier about things I found helpful during my chemo sessions.  I decided to put it in a separate topic so that others might find the information useful as well.  Hopefully this will help you to understand what your Mom may experience during her chemo sessions.  It’s good to know that your Mom has tolerated her first chemo well…”

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