LYNPARZA~A separate reply 2 "PandaGypsy" re her upcoming treatment if she can afford it! + video & p

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

Dear “PandaGypsy” ~

I read your very post here at this link:  https://csn.cancer.org/node/309418

Since I had no personal experience “firsthand” with Lynparza I didn’t respond.  However, I have had “first hand” experience with having my “omentum” removed, but that wasn’t your question.  I see on your “about me” page (Expressions section) that you had a lumpectomy for Breast Cancer and 4 months of “nasty chemo and radiation”.  Since I’m not familiar with your cancer other than that, can you tell me exactly what your diagnosis reads now?  I’m assuming that it has now progressed to some other organ since you are now considered terminal. 

Since I too am a terminal Ovarian Cancer patient, and since I had seen the drug name “Lynparza” several times, I decided to do a little more research on it.  And since I spent so much time reading about what its intended purpose is, I decided to post my reply to you here, instead of below your original post regarding the high cost of this drug.  That way others will learn at least as much as I have learned.  So below my name, I’ve listed several youtube videos as well as medical articles referencing the use and purpose of “Lynparza”. 

But first I want to say that I’m glad to see that you have learned an important lesson very quickly—YOU MUST BE YOUR OWN ADVOCATE.  Moreover, you have to become a lay nurse, and find research on the kind of cancer you have, and then discuss it with your doctor.  As for drugs, I know that there is a “tier” system to the drugs, and that different companies will put meds on different tiers.  They cost more on one tier than another, and it’s their prerogative as to which tier they place it on.  That’s one thing to consider when trying to figure out which policy to purchase.  All companies do not put Carboplatin on the same tier for instance.  An “HMO” isn’t noted for the most generous provisions based on people that I know who have them. 

I’ve found from reading oh so many posts that few doctors are going to tell you what you need to know, unless you know what questions to ask.  I know one young lady from Canada, (national healthcare country) had no choice of doctors—was assigned one—was told what would be done—waited weeks before calling back after no one had contacted her—result she called again—papers were still lying on a worker’s desk—had never been sent ANYWHERE!  So yes, you have to be a “hound” as well, and “track down” your own paperwork and you do have to be persistent.  I’ve now gotten a bill—nothing like your drug bill though—have called on 3 separate occasions to say, “You have my policy #.  This bill should be covered!”  And so now, for the third time, I’ve given them my policy info.  This is for treatment months ago.  And so you also have to be a bookkeeper and an accountant.  And something else I note is that the first bill that comes in will have the date of treatment.  Subsequent bills for the same treatment can come in, but the rest do not necessarily still have the date of treatment.  Sometimes the bills come in quickly, and sometimes they seem to lag far behind the treatment date. 

Long ago, I began buying a “large” calendar from an office supply store that shows all days of the month on one page with blocks big enough to write on.  I have one on the side of my refrigerator.  And so I write on it the date of my appointments and treatments.  Often I have to go back to that to see what on earth this bill is for.  Although the bills are almost always paid for, if the bill doesn’t have what the treatment is for, I have to check my calendar. Otherwise, I can’t be certain that this bill isn’t a duplicate of something that has already been paid for once! 

Moreover, I have kept a record of my treatments in my WORD file, so when I go for a new doctor, I just print out my medical history.  And where it asks what medical treatments, surgeries, etc. have you had, I just write “see attached medical history.”  This saves me lots of time.  Now sometimes the doctors will send me those forms in the mail and request that I fill them out prior to my visit, but some do not.  I, for one, have not committed to memory all the dates of surgeries in the last 78 years.  Now, naturally I do remember the dates of my 3 boys’ birthdates—intense pain—and my biggest surgery, that being “Cytoreductive Surgery”, July 1, 2013.    

And one more thing I do, each time I have a scan of any kind, I tell them ahead of time that I would like a copy of the scan, as well as the written report when it becomes available.  But I do come home with a copy of the scan the same day, or I can wait a couple of days and pick up both the scan and the accompanying report.

Well, I’ve said all that to say this.  Although at the first, I thought the receptionist was just going to put you off.  Greg, the financial fellow, was really busy and the nurse who usually fills out these kind of papers isn’t in, so were you supposed to just “go home” papers in hand and wait for a call?  I imagine your “colorful” language is what got the receptionist’s attention.  By now she understood that someone was going to have to take care of you and she was “it”.  She did the right thing!  I certainly would give her a special "thanks" for realizing that you were adamant as well as desperate.  I’m glad you got those papers “signed, sealed and delivered!”

So let’s see now, in addition to being the patient, you have to be your own researcher, advocate, intercessor, accountant/bookkeeper, financial advisor and mail lady!  Undecided And how much are you getting paid?  I’m hoping this is going to “pay off” in having your medicine provided for you almost free of charge, if not free.  I know lots of people that are getting “free stuff” that they really could pay for, but instead they know “how to work the system”.  But I won’t detail by what I mean here, but it is aggravating when someone has to figure out how many hoops they have to jump through to have something that should have been provided them in the first place.

And one more, may I add “scheduler” to your list.  Sometimes you have to be forceful to get an appointment when you need it! I specifically remember one of my friends on the Esophageal Cancer site who, when she called the doctor about her husband’s problems, was told by the receptionist that her husband was progressing normally, and that she would have to wait until his next regularly-scheduled appointment to see the doctor.  My friend wasn’t forceful.  Needless to say her husband suffered greatly during the interim.  So often we have to summon up the courage and decide we will not take “NO” for an answer.

And one more thing, as usual, I note that one of the side effects of taking Lynparza is nausea.  During my 3 different regimens of chemo thus far, I’ve found that taking my anti-nausea med each morning the very first thing before I have any symptoms of nausea, kept me from becoming nauseous.  My medicine was “Granisetron” trade name KYTRIL.  Clinical trials have proven it to be more effective than “Zofran” for nausea.  Just thought you might want to know that as I’m certain your doctor will prescribe some form of antiemetic. 

Here’s hoping that Lynparza will prove to be effective so that checking in with Hospice will not be your only option any time soon!   

Love & prayers for you "Gypsy"

Loretta - Peritoneal Carcinomatosis/Ovarian Cancer Stage IV - DX Nov. 2012 - (Neo-adjuvant chemo of Carboplatin/Paclitaxel (Taxol) then Cytoreductive Surgery July 1, 2013 @ University of Pittsburgh Medical Center (UPMC)

P.S.  I’ve looked up info on “Lynparza” as it may be something my oncologist might recommend once I become resistant to the current platin drugs.  Of course, I never know what a day will bring, but others reading your letter may also want to know more about this drug that is given in pill form.  This list is by no means exhaustive but can serve as an introduction for those who might have Lynparza prescribed for them in the future.

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1.  https://www.youtube.com/watch?v=VRhz3DhjG5M

How Cells Divide and How Chemotherapy Works

Uploaded on Jan 23, 2012

A cell is the functional basic unit of life, often called the building block of life.  Humans have about 100 trillion cells.  Your body is constantly producing new cells.
               In this program, we will discuss how cells divide, how chemotherapy affects cells that are dividing, and how chemotherapy affects cancer cells.
              When a normal cell divides, it goes through a series of steps, including a duplication of its DNA, which contains the genetic instructions used in the development and functioning of living organisms.
              The end result of the cell division is the formation of two identical daughter cells.
Let's begin to explore how this process happens.  The cell goes through many distinct steps as it divides…”

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2.  https://www.youtube.com/watch?v=mgW30YyaJz4

How PARP inhibitors work –

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3.  https://www.youtube.com/watch?v=BDzIW4xdghI

(Here is a 17 minute video) “PARP Inhibitors and Ovarian Cancer | Memorial Sloan Kettering”

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4.  https://www.youtube.com/watch?v=PRSC4p3yKkc

“OncLiveTV- Published on Feb 20, 2017 -

Panelists Bradley J. Monk, MD; Kathleen N. Moore, MD; Robert L. Coleman, MD; Thomas Herzog, MD; and Angeles Alvarez Secord, MD, discuss the clinical research and regulatory activity surrounding the PARP inhibitor, olaparib, in ovarian cancer.”

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 5.  https://www.youtube.com/watch?v=Yq16F3MaN2M

“Expert Perspectives: The Clinical Potential of PARP Inhibitors in Ovarian Cancer

 ImedexCME - Published on Jun 27, 2015 - In this Expert Perspectives activity, Dr. Bradley Monk leads a conversation with Dr. Ursula Matulonis and Dr. Thomas Herzog on the clinical potential of novel PARP inhibitors for improved management of epithelial ovarian cancer. This discussion is a review of their symposium presented during the 2015 Annual Conference of ASCO.”

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 6.   http://chemocare.com/chemotherapy/drug-info/lynparza.aspx

“Lynparza™ - Generic name: Olaparib

Lynparza ™ is the trade name for the generic chemotherapy drug olaparib. In some cases, health care professionals may use the generic name olaparib when referring to the trade drug name Lynparza™…

How Lynparza Works:

Targeted therapy is the result of about 100 years of research dedicated to understanding the differences between cancer cells and normal cells. To date, cancer treatment has focused primarily on killing rapidly dividing cells because one feature of cancer cells is that they divide rapidly. Unfortunately, some of our normal cells divide rapidly too, causing multiple side effects.

Targeted therapy is about identifying other features of cancer cells. Scientists look for specific differences in the cancer cells and the normal cells. This information is used to create a targeted therapy to attack the cancer cells without damaging the normal cells, thus leading to fewer side effects. Each type of targeted therapy works a little bit differently but all interfere with the ability of the cancer cell to grow, divide, repair and/or communicate with other cells.

There are different types of targeted therapies, defined in three broad categories. Some targeted therapies focus on the internal components and function of the cancer cell. The targeted therapies use small molecules that can get into the cell and disrupt the function of the cells, causing them to die. There are several types of targeted therapy that focus on the inner parts of the cells.

Other targeted therapies target receptors that are on the outside of the cell. Therapies that target receptors are also known as monoclonal antibodies..."

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7.  https://www.ncbi.nlm.nih.gov/pubmed/22081189

(Superiority of Granisetron over Zofran as an antiemetic)

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8.  http://www.mdedge.com/obgynnews/article/112000/gynecologic-cancer/extended-release-granisetron-superior-antiemetic

CONFERENCE COVERAGE - Extended-release granisetron superior antiemetic for cisplatin chemotherapy - Publish date: August 27, 2016…”

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9.  http://www.cancerresearchuk.org/about-cancer/cancers-in-general/treatment/cancer-drugs/olaparib

“Olaparib (Lynparza)

This page tells you about the biological therapy olaparib (pronounced oh-lap-a-rib). There are sections on

Comments

  • pandagypsy
    pandagypsy Member Posts: 113 Member
    edited May 2017 #2
    Thank you for your

    Thank you for your understanding....you obviously have BEEN THERE DONE THAT. I have been ALL that you have mentioned......& I don't quit til I am satisfied with the outcome....my Dad called me "stubborn"; I prefer FEISTY!

    Breast cancer was a long time ago, 1983 & 1985. Since I will be 62, I was very young then. First bout with ovarian cancer 2009 (6 months platinum chemo, then total hysterectomy by a onc. gyn. .6 more months of platinum chemo) reoccurance 2014 6 months chemo, another bought just recently April 2017 . I am BRCA positive & since I developed neuropathy from platinum drugs it's considered toxic to me. I've read sooooo much on the PARP inhibitors & the effects sound as bad as chemo. I'm waiting to hear from the Dr. on when to take it, with or without food etc. I think I will wait til after I see him in 3 days so I can be prepared with anti nausea drugs....   the only thing that worked before was Ativan.I'll keep you posted......thanks!

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