Where do Wonderful Women go when they die?

"Elysium at a distance" Island of Santorini,  Greek Islands of Cyclades, Do not copy without written permission of . Robert  Lyne-Samds

Does the "Cancer Industry" really care?

 A tribute to  "Jilly", a woman with courage who endured too much pain for too long.

Sandsie's Comment. 

    This arrived yesterday:

Dear Friends, 

   It is with great sadness that I let you know Jilly died early this morning. I was with her, along with a couple of dear long time friends as she was finally released from the pain that has tortured her these last many months.

   Our family is grateful for your caring support of our Jilly and her beloved dog Sienna. We thank all of you and know you are as grief stricken as we are at our great loss. Please take a moment to hug your loved ones close and appreciate how precious each moment is that you share.     - Jilly's Family

    Last November, Jilly wrote this to me . . .

Dear Bob

    I am writing because this week concludes the 40 treatments that were promised to me in return for my cooperation and agreement to be interviewed and appear as a chapter in your book. 

    I approach these last few treatments with apprehension and trepidation, as I still have a ways to go before I feel entirely whole. 

    Most recently, your oxygen chambers have helped me with the pain under my arm, where my cancer doctors removed my entire fat pad, and then went back in during a second surgery and scraped whatever was left to make sure I had no lymph nodes remaining that could be cancerous.  

   However, what I am wondering is, if I got a prescription to continue treatments for wound healing, would your facility take my insurance, which is Medicare with a supplement of Mutual of Omaha.  I ask this not only because I am afraid to stop treatment before I feel even remotely ready, but because after my reconstruction surgery in January, my surgeon intends to send me for more HBOT, and if possible, I would like my treatments to take place at your facility, which I know could use the business (paid for, of course!). 

   Also, I wanted to thank you wholeheartedly for your kindness in giving me the 40 treatments that I will have had at the end of this week.  Even though I know I could use more, I have made tremendous progress due to your generosity

Love n Light -- Jilly

   Neither Mutual of Omaha nor Medicare would pay for hyperbaric oxygen therapy treatments. WHY NOT? It would have saved them thousands of dollars.


    We did not stop those treatments - in all, Jilly had 66 HBOT Tx under our Healing Chambers International scholarship program -- no cost to Jilly.

   Jilly was 38 w hen she succumbed to her cancer and what essentially A DELINQUENT AND UNCARING  treatment at the hands of her oncologists (her words not mine . . .) As you will hear her recorded words from what we hope is the happiest place for her, Jilly will tell you a story of medical torture; the sadness of being sent into menopause by massive doses of the most expensive chemo' drugs;  six weeks of massive radiation contraindicated because of  her lupus; and being continually kept in the dark by her oncologists with her questions avoided or ignored.

HOWEVER, SINCE SHE WAS MAKING PROGRESS, WE HAVE TO ASK, DOES THE CANCER INDUSTRY EXERCISE "DUE CARE" OR IS IT ALL ABOUT THE DOLLARS?


ARE THE JILLYs OF AMERICA JUST STATISTICS AND THEIR CONSTANT AND UNRELENTING PAIN OF NO CONSEQUENCE TO PHYSICIANS, HOSPTIALS AND INVESTORS?

Who or what is the Cancer Industry?

• Oncologists, 
• Hospitals
• Charity Groups that raise money for cancer research.
• bigPHARMA corporations, 

First, we will start with the oncologists.


     Do not get me wrong, many of them do care for their patients. One of these, a Professor of Pediatric Hematology and Oncology at University of California, San Diego  once told me "Sandsie, I lost 14 kids last year. My grief was as bad as if each child was my own," Professor Jen is the mother of two.

    Back to Jilly's own words from  Elysium, where she is doubtlessly putting her formidable intellect to work, arguing law, writing verse and back to athletic competition, She was quite a woman. Her words are hi-lighted thus.  Remember, this is a transcript from tapes and spelling is "as is"

    I don't feel normal. I'm depressed and going through menopause, you know?' and I just turned 38. i wasn't prepared for that. they don't prepare you for anything. what they do is they give you no information. They give you little tidbits at a time because they don't want you to know very much because if you did, then you probably wouldn't go through with it. Honestly. and so...they dole out...you're, like, 'Oh, my god. I'm so depressed. why is this happening?' 

    They're, like, 'well, the chemo, because you're so young and because your cancer was at this stage four, we gave you the most heavy and the most increased heavy dose of chemotheraphy that we have which generally does trigger menopause in even the youngest women. 

    And I'm, like, 'oh! thanks for the information!' so that's how it's been my entire cancer. experiences, I have to, as I come up on the experience, then they're like, 'yes. this is what happens.'      


    They don't tell you in advance because if you knew in advance you probably like run the other way.

  And even with this radiation where it's contraindicated...people in my family that are in the medical community were like, 'it's contraindicated. if you get radiation, it can trigger all these things.' 

    My oncologist was, like, 'you have to get radiation. it doesn't matter. we've treated women with lupus. you have to get it.' and I've been left with this incredible amount of pain. 

    When I call them, I can't get a hold of them. there's nobody...they're basically backed out on me. they're...like they just basically...they have nothing to say about it. they're just, like, 'well, this is just the way that it is.' you know? 

Sandsie's Comment:

    I cannot help but wonder . . . 

• was this avoiding information and response to her questions because Jilly was a high profile litigation attorney?  
• Was it the cynicism of older oncologists ho appear have the conviction that they cannot save their patients but, nonetheless, go through the dollar making processes of turning  a wonderful being like Jilly  into a statistic? 

    An interesting comment was made to me last year by another of our Cancer survivors. We were walking through a stunning  Sharpe-Steely hospital (IMPORTANT SANDSIE NOTE -- I am not sure that this is where Jilly was treated ), and that patient made the comment         "This place is perfect -- but it gives me the creeps. It is the place where I used to come . . .  it is as though the magnificence of the place is to hide the fact that they turn people into sausages . . . that no one wants to eat." 


Back to Jilly's comments from Elysium  

Date/Time Recorded : 9/10/2011 11:23:32 AM . Record time : 0:11:56 Recording file name : 110910_014

    Because my other (oncology) doctors have just abandoned me. They're, like, 'we did our job. sorry.'

    I went through so much pain. Now they go on to treat their newer patients and I'm just shit up a creek. I don't know if they really even have treated other women with lupus or if they just say that. You don't know. I have never come across another breast cancer patient with lupus.

    I've been trying. My radiation oncologist left the place where I got radiation shortly after and they won't tell me where she went. I can't get a hold of her. I, like, 'well, can I talk to one of the other doctors?' I've  not been put through. I've said, 'can you have one of the other doctors call me back.' Nobody's ever called me back. 

    But in the last week, when I've been going crazy with the pain, insane because my rheumatologist had prescribed a lytocane cream and I ran out. So I've just been insane. i just filled the prescription so i'll be able to get it in a day or two. I'll be ok. so, it's just, you know, it's like ...

    it's, i think it's just the way that they do western medicine. that's why i've told my family, 'if it ever comes back, i won't go through western medicine channels. i'm going to use eastern medicine to treat it.' cause, it felt so violent and the chemotherapy didn't work like I said. 

    I was riddled with cancer after almost six months of chemotherapy. which did all these horrible things to my body and i'm still probably dumping all the toxins out of my body. so...I don't know. yeah.

     I feel I was so vibrant and doing so well before (the chemo and radiation.) It was, like, I had a tumor, a lump in my breast  .  .  .  but nothing more. 

 Sandsie's Comment:
    If you are walking in Jilly's shoes . . .

•  ASK QUESTIONS OF YOUR ONCOLOGIST. They are paid a lot of money each year and collecting off the Government or health insurance company BECAUSE OF YOU. Make them earn their money.
• Remember, Specialist Physicians are part of your Symphony  of Survival. If they will not obey your baton swing, THEN FIRE THEM just as any conductor would in a real orchestra.
• Always get a second and third opinion. Conquering cancer is a marathon, not a race. Do not be panicked into "accepting" opinions.
• Best to not represent yourself with an oncologist. You need a  "pit-bull" patient's advocate. Remember that you are fearful and you may give the wrong impression to the person in the lab' jacket at the other side of the desk. 
• Ask about hyperbaric oxygen therapy as an adjunct. It works. Took away Jilly's pain. Since it can do no harm, who would not add this to the interdisciplinary survival approach. It costs just pennies nc comparison to radiation and chemo drugs (notice that Jilly's oncology surgeon recommended this.)

Now for bigPHARMA and CORPORATE GREED. It is all about the dollars . . . NOT THE JILLYs OF THE WORLD.

As  a single recent example, I choose one the newest treatment of end-stage melanoma since it has a terrible metastatic potential.  Once this cancer starts to “dandelion” its seeds throughout the body, death usually follows within two years.

In March, 2011, Bristol-Myers Squib’s cancer drug, Ipilumab (“Yervoy”) was approved by the American Food and drug Administration. Here is a quick peek at the “sizzle” that goes along with the approval of any new drug in order to encourage the investors: [1]

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[1]  Larry Smith – “Seeking Alpha- Learn, Decide and Invest” March 28, 2011. . . . “. The addressable U.S. market for Yervoy at this new price point is about $1 billion. We do not think that the high price point will be a major deterrent to Yervoy use and think that it can reach 70% of the U.S. addressable market in five years. This results in a U.S. sales estimate in 2016 of $700 million.”   . . . “The foreign addressable market is estimated to be two times the size of the U.S so that the worldwide addressable market for Yervoy is $3 billion. . . Based on this reasoning we are raising our 2016 worldwide sales estimates from $1.2 billion to $1.8 billion” Bristol-Myers Squib’s shares promptly bounced from $25.00 per share to $35.00 per share.  

__________________________

    What was the cost to the patient to get two more years of life? 

     Investment analyst, Larry Smith continued “The price is higher than expected” . . .

“The recommended dosage of ipilimumab (Yervoy) is 3 mg/kg given as an IV infusion for 90 minutes. The label calls for four doses to be given at three week intervals. BMY is pricing each dose at $30,000 per dose so that the total cost for a full course of therapy is $120,000 . . . I thought that BMY would price the drug at $50,000 to $60,000 for a course of therapy. I was wrong. BMY seems to feel that because of the strong efficacy results and the fact that there are no other drugs that can provide a survival benefit in metastatic melanoma, the price could be justified.”

Bristol-Myer Squib doubled their price.  

The real questions for the patient that are told that they are dying of cancer are “Are there and side effects? and “Does it work?”

In what is now referred to as the  “Yervoy Catastrophe”[2]

    “There were 14 deaths related to the study drugs and 7 of these were associated with immune-related adverse events. In contrast, the complete response rate was only 0.2%, in one patient out of 403 who received ipilimumab (Yervoy) plus a peptide vaccine. Promoters of ipilimumab (Yervoy) appear to be unmindful of the clinical trial catastrophe in London.”

Despite the Yervoy Catastrophe Bristol-Myer Squib continues to promote this drug in the USA. And it does so, notwithstanding appalling side effects on patients.[3] 

    On April 23, 2012, their CFO, Charles Bancroft, reported the U.S. Ist Quarter sales of $117 million.


      Did the investors worry about the deaths? 

    No, just the profits that could be gleaned from desperate patients.  A review of the investors is revealing. In their questions of CEO Bancroft, Not one of the primary investors asked about the safety or effectiveness of the drug only about the profit potential of the drug since the  FDA withdrew its approval of Yervoy.

[1] Goldman Sachs Group Inc., Research Division, Barclays Capital, Research Division, Sanford C. Bernstein & Co., LLC., Research Division, Leerink Swann LLC, Research Division, JP Morgan Chase & Co, Research Division, ISI Group Inc., Research Division. B of A Merrill Lynch, Research Division,  UBS Investment Bank, Research Division, Citigroup Inc, Research Division, Morgan Stanley, Research Division.

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[1]  “Rational Therapuetics” October 20, 2011

[2] Immunobiology. 2012 Jun;217(6):583-9. Epub 2011 Jul 7.

[3] "YERVOY can result in severe and fatal immune-mediated adverse reactions due to T-cell activation and proliferation. These immune-mediated reactions may involve any organ system; however, the most common severe immune-mediated adverse reactions are enterocolitis, hepatitis, dermatitis (including toxic epidermal necrolysis), neuropathy, and endocrinopathy.” FDA “Black_Box Warning.

A final word from Jilly,on February 1 of this year, 2012, A courageous lovely woman who should-be and could be-living a pain-free life and contributing so much for us all:

Dear friends and family, 

    I wanted to give you an update on where things stand with my health now that I have had some time to let my diagnosis sink in and look at my options. 

    I met with the new doctor at UCSD’s Moore’s Cancer Center (even though I will be meeting with and for all intents and purposes be being treated by one oncologist at Moore’s, there is actually a team of four oncologists who have similar practice styles and share patients and even present all new patients at their “Tumor Board” for consensus opinion, so I’ll actually be getting four doctors for the price of one!), and was told a lot of things I already knew and some things I did not know. I am going to try to fill you in as best as I can.  

    As I already knew, I have a very aggressive form of cancer that has not gone away, despite all of the aggressive treatment that we have thrown at it. Last year, I had the most aggressive form of chemotherapy commonly used to treat my form of cancer. Following chemo, I had radiation against the better judgment of my Lupus doctors (radiation is contraindicated for people with Lupus) and it was horrifyingly painful. I still have terrible pain in the areas I was radiated. In just under a year, I have had seven surgeries and spent significant time in the hospital at least ten times. 


    I have been doing Hyperberic Oxygen Therapy for nearly five months, which has, without question, been the very best treatment I have had and am still having. It has brought me back to life when only months ago I was still reeling from my previous treatments and truly felt like I was dying. 


    The oxygen therapy treatments have alleviated a great deal of my physical and emotional pain, and I believe it is the only reason why I am still alive and kicking today (just my opinion). I have done a great deal of other non-conventional types of treatments, all in the hopes of curing my cancer.    


    Despite all of the above, curing my cancer does not look like a real possibility; however, living harmoniously with the cancer may be a possibility, and is something I am working on. Regardless, my cancer is back (or never left), and the prognosis is not good.  

    According to my most recent PET scan, the cancer has spread to my collarbone, my lungs, under my right arm, and under my right pectoral area. I am having another PET scan in the next few days, and there is a very good chance that it will show that the cancer has spread even further. Barring additional treatment, my doctor has given me about six months to a year to live; with further chemotherapy, however, I may live a few more years.    

   Next week I am having another surgery, and once I am healed, I intend to start chemotherapy at Moore’s Cancer Center.


     I also will be getting my affairs in order, and as anyone who knows me even a little knows, my biggest concern is my dog, Sienna. She is a rescue, was abandoned by her first owners, and I promised her that she would never be abandoned again. It is killing me that I will eventually have to break that promise. As a result, I have secured Sienna an amazing home with a friend. Still, I would like to leave my friend not only Sienna, but also money to care for her. This being the case, I had an idea. Lately, a lot of people have been asking me if they can send me something. I have started an account for Sienna’s care once I’m gone. If people want to give me a gift, the biggest gift they could give me is a contribution (no matter how small) to Sienna’s fund. I’m still figuring things out as I go, so I have to figure out the best way to do this, too (any advice would be greatly appreciated). I don’t know when I’ll die, but when I do, I want to go knowing that I left Sienna in the best possible care (which I know she’ll be in), without her being a hardship to the person I am leaving her with. 
  

    So, I know this has been a heavy email, but I also want people to know that no matter what happens, this moment is all there is for any of us. I have been so blessed that so many of you have chosen to spend so many of your moments with me. What a miracle! Thank you all for the comfort, support and love you have given me throughout the last year and a half of my cancer struggle. I realize that I probably would not have come even this far had it not been for all of you holding me up, even when I could not hold myself up. 

    I truly wish I no longer had to write these posts – I certainly would understand if you got sick of reading them!!! Whatever you do, though, please don’t give up on me, because I’m not ready to give up yet. I love you all so much! 

I love you all!  Jilly