Mother is carboplatin-refractive, what else can we do?

Hey Lisa - Maybe later this site will take the rest of my letter to you, but I've said enough to give you the impetus to "charge ahead", follow your instincts and question everything this current surgeon says.  A second opinion would be a necessity if this were me.

Loretta

(My entire letter to you will not post, so I will break it up and see if the first part will post.  Once again I am getting "blocked" by SECURITY.  Can't tell you how many times they have attempted to "solve" this problem, but ever since they have "improved" the site, things aren't working as they used to.  They have at least a dozen messages from me, and have made attempts to stop this from happening, but HERE WE GO AGAIN."  I'll try again later to post the web link addresses I wanted to share with you.  But here is the text of my letter.)

First of all, I’ll call you “Lisa” and say hello –

A few questions come to mind immediately as I read your letter.  And I totally agree that the patient must be their own ADVOCATE, RESEARCHER, Physician’s Assistant and CAREGIVER AND/OR PATIENT all at the same time.

Secondly, at the age of 74, in November of 2012, I was diagnosed with Peritoneal Carcinomatosis, (numerous large tumors in my peritoneal fluid in my abdomen).  I sought a SECOND OPINION at the University of Pittsburgh Medical Center with Dr. David Bartlett.  There I had a PET/CT scan and exploratory surgery.  Cancer would also be found in my ovaries.  But understand that I was already Stage IV from the time of my initial CT scan in November.  But since the treatments are the same for both Peritoneal Carcinomatosis and Ovarian cancer, I'm being treated as though I only had Ovarian cancer. 

The findings were that the tumors were too large in size and too many to perform Cytoreductive Surgery (CRS) (debulking in layman’s terms).  Their recommendation – have a series of chemotherapy consisting of Carboplatin and Paclitaxel (Taxol) and then they would take a second look.

So I completed the 6-session chemo combo treatment and it was ROUGH!  But the findings were that the tumors were reduced in size to the point that surgery was possible.  Now I will tell you that I had learned of a new “heated chemo treatment” known as HIPEC.  It is done at the end of the surgical removal of (in my case) the spleen, gallbladder, ovaries, fallopian tubes, omentum and sections of my intestines.  I had already had an appendectomy at age 12, or my appendix would have been removed as well.  My surgery was performed on July 1, 2013. And the surgery wasn’t a piece of cake either.  I had an infection that caused my incision to break open from right above my waist line to the pubic area.  I was in the hospital there for a total of 42 days.

Now I will tell you that the infection was the culprit that extended my hospital stay.  But ultimately it was cleared up.  I have no complaints except for one “nurse’s aide” which I will call “Nurse Cratchet”!  I won’t go into detail, but she should have been on duty somewhere patients were not trying to recuperate.  She was grouchy and mean-spirited.  And I might add, I gave her a nice write-up as to her quality of service.  She should have been FIRED.  I told the head nurse that I never wanted that lady in my room again.  So sometimes you have to be the BOSS as well!

Then in 2014, three tumors were found to have attached themselves to the Caudate Lobe of my Liver.  Now that’s not IN the liver, but bordering it in a sense.  I had successful “Cyberknife” targeted radiation that was totally successful. 

Then in June of 2015 that I began to have indications of intestinal blockage.  (My stomach was distended and I had pains akin to childbirth.  For all us mothers, most will never forget that pain or at least I NEVER WILL! 

At that point, my oncologist did another CT scan, and said, “You’re going to have to make a decision at this point.”  Now, he never made the decision, only gave me the options.  That’s the way we agreed upon things from the very beginning.  He kept nothing from me.  He said, “Either you can choose to go on Hospice, or we can do another round of the same chemo.  You had good results with the last series and it’s been 2 years.  I think the chemo regimen would probably work well, and would give you many more “months” of survival.”    I prayed about it, and decided to take the chemo route.  So I started a second round on June 11, 2015 and completed it in Sept. of 2015.  It did reduce the size of the tumors, but not the number.  I tell you all that to let you know that women my age are still capable of having both surgery and treatments that can extend their life span and quality of life.  Sounds like the doctor just wants to "let nature take its course", and he isn't about to "lose his job!" 

            Now Lisa, are you telling me that your mother is going to seek treatment at MDAnderson in Houston, TX, or has she already been seen there, and now returned home to Santa Barbara, CA to undergo the chemo treatment of “Doxil” plus Avastin?  You can see references and remarks below my name.  However, in my own research, I have not found AVISTAN to be anything remarkable. Personally, I am “averse” to Avastin and would never take it since I know of a couple of patients that have bled to death and AVASTIN was known to have adverse side effects that their relatives said caused it.  You can decide for yourself if all the potential side effects of this drug are things you want your mother to be subjected to and yet it provides no promises for help with Ovarian cancer.   

Lisa, as for your question about clinical trials for Immunotherapy, here is a link that should be helpful for you.  Presently I am reading many articles involving immunotherapy because it is proving to be effective in more than one type of cancer.

1. http://www.cancerresearch.org/cancer-immunotherapy/about-clinical-trials/should-you-participate

Now Lisa, I am not liking this statement made by the doctor.  “In April, the dr said that the Cancer is inoperable, it would be dangerous, he would lose his license to operate.  He told her she is Platin-resistant and it was a very aggressive form of  cancer.”  

This would be enough for me to seek another opinion.  Mom is not married to that doctor, is she?  Some surgeons are more aggressive than others, and take on patients that some are too timid to touch.  Why not seek a second opinion NOW at Stanford since you say that is doable?

And as for the colostomy, my surgeon mentioned that it might be part of my operation, but once he examined me more closely during the actual surgery, he ruled out both HIPEC (Heated Intra-peritoneal Chemotherapy) and a colostomy.  Since I had prayed about it, I wasn’t overly upset about it.  After all, the surgery wasn’t able to “eliminate” the many tumors in my abdomen, but they were able to remove “non-essential” organs to which the cancer would eventually spread.  This has given me more quality of life than I would otherwise have. 

Why not call up Stanford and see what it takes to have a consultation with one of their best surgeons?  I have Stage IV Ovarian cancer, and I am no “spring chicken”, and I was a candidate for Cytoreductive Surgery after my first series of Carboplatin/Paclitaxel (Taxol) treatments.  The tumors were eliminated but were reduced to a size that my UPMC surgeon could work with.  Moreover, I had consulted with another surgeon before going to UPMC.  But I ruled them out when they said they didn’t like to perform surgery on anyone over 60!  Of course, they said, “You can send us your records though.”  They weren’t in any particular hurry, but I WAS!  And so UPMC made an appointment for me for a SECOND OPINION within 3 weeks from my initial diagnosis of “Peritoneal Carcinomatosis.”  So, personally, I wouldn’t take that doctor’s word as FINAL.  After all, you said your mom is Stage III.  Yes, it will move faster, if no effective treatments can be found to slow the progression.  But frankly, I think you need to “turn a corner” and find another place more hospitable to the needs of your mother.  At least you will have satisfied your own conscience that you’ve done everything possible to have help for your mother.

At this time, I don’t understand enough about Immunotherapy to put it in a few words, but when I do more research on it, I will be sharing it with “sisters” here.  I'll be discussing the possibility of immunotherapy for me as well, if my oncologist says I can be added to their trial.  There are certain criteria for all clinical trials you know. 

All the best to you in your endeavor to find help for your Mom.  I know what it’s like to be both a caregiver, and a cancer patient myself.  If you click on my picture, up will come my “about me” page and you will find that I’ve been around the block already, and thank God, I’m living with a miracle.  And as for me, I’ve already lived longer than I imagined and like I say, I’m not gonna’ leave this earth one day sooner or one day later than my allotted number of God-given days.  But God expects us to use the “good sense” He gave us, and I think you are doing just that.  May He bless you in your efforts to find something that will give your mother more quality of life and more days to be with the family that she loves.  I know you will say, “AMEN” to that. 

Sincere prayers for you in your search for help,

Loretta Marshall

Peritoneal Carcinomatosis/Ovarian Cancer Stage IV, diagnosed November 2012

p.s.   (My note:  This is a heartbreaking letter from a widow whose husband was treated with Avastin.)

http://csn.cancer.org/node/213333#comment-1029056

"Thinking of you

Grandma Jo,

I'm so sorry that you're going through this with your daughter. It has to be so very hard to watch your child suffer. I hope you cherish every day you have with her. You sound like a great mother. Cancer is such a horrible disease and it can change your life overnight.

I lost my husband of 46 years last March 25th. I can hardly believe it's almost a year since I held him in my arms.

He had been diagnosed in January with lung cancer & lesions in his brain & spine. He had 2 weeks of radiation to his brain & spine which showed good results. Then he had his first chemo treatment with 3 chemos one of which was Avastin. He started coughing up blood before his next treatment, so they did a CT scan and said things looked good, but his next chemo would be minus the Avastin.

Well it was too late. The damage from Avastin had already been done and he hemorrhaged in the bathroom one night. It was traumatic & I couldn't do anything except call 911. They worked on him for 45 min. but it was too late. I question the Avastin because on the info it said "can be a RARE side effect--hemorrhaging. Since it did say rare, guess we had faith that it wouldn't happen. But it did!

Sorry I'm rambling. Please be strong and give your daughter a hug for me, okay?
Friends, Carole"