About Me

Hello! I’m Yamini. I’m a PhD student at Indiana University, Indianapolis. I’m a pineal tumor survivor. This blog is an attempt to share my insights on life on the tumor. I say I was on the tumor because to have a brain tumor is like waking up with the most terrible hangover you ever had every day except that you don’t need any substances to give you one.

In my capacity, I’m trying to reach out to all of you who are on a similar path and reassure you that it is not your fault! It is not easy to live with impairment and you should be proud of whatever you are able to do to the best of your abilities. I have been trying to remind myself this quote:

“Disabled people do not need to justify or compensate for our existence. We do not need to be smarter, more creative, more scientific, or more accomplished than non-disabled people in order to be loved and accepted. Above all, disabled people have the right to be ordinary.”

– Emily Sheera Cutler

I write this blog for two reasons:

  1. You don’t know what you don’t know. I came to know about recovery as I went through it and I wish someone told me what to expect. I find out about various symptoms, diagnoses, and treatment procedures as I navigate one after another. Had I known this information proactively, my life would have been very different, even better, today.
  2. It is very difficult if not impossible to go through this journey alone. There is nothing more disheartening than your loved ones doubting your sanity or finding your experience unfathomable.  As private as I’m about my life, I want to put this information out there so there is more awareness about the condition and its symptoms. It is frustrating that we have so much to know about brain injuries although they are as old as dinosaurs. I hope that anyone who has to go through this journey has as much support as they need because the strength of the entire world seems to be inadequate when you can’t see the light at the end of the tunnel. In those scenarios, access to information of this kind could literally mean the difference between life and death.

I’m very open to discussing my medical progress in case you want to know any information. This blog might not be the most contemporary depiction of my situation but please reach me at yaminipatnaik.k AT gmail DOT com if you would like to discuss anything related to brain health.

Through this blog, I’d like to thank you all for the love and support you give me through my journey. A special shout-out to my facebook support group (cysters for life!) for making the recovery possible and PhD advisors for making accommodations for recovery through graduate school. How could this section ever end without thanking the man who saved my life with his minimally invasive procedure? Meet my hero, Dr. Hrayr Shahinian from Skullbase Institute. You’d think such people only exist in books, but, he is real!

Lots of love!
Yamini

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13 thoughts on “About Me

  1. Yamini

    I don’t want to share sympathy and meme you weak to fight this battle. This is the battle that we alone haze to fight. One man army.

    There is a ray of hope. I do remember hearing about breakthrough in dealing with Brain Tumer that are Unoperatable, can be des solved with new medication.

    Keep in touch with me and I will send you more information on my digging.

    Meanwhile you may discuss this with your health provider or specifically your Neurosurgeon, they must be well aware.

    Don’t feel alone. We ll are their for you.

    Love you.

    If you know Rima Salve, MS Student at Indiana (Graduated in 2014) she will tell you more about me.

    Prakash Dave

    Liked by 1 person

  2. Hi Yamini, came to know about this appeal through my friend Sathishkumar, who inturn came through a person by name Swaroop. So sorry to hear about your situation. I am M Raghavan, a founder of an NGO named SHaDE (http://shade.org.in). We will surely do our best to help you in the best possible ways. May god be with you to overcome this struggle and our best wishes and prayers!

    Can you please drop me a note to raghavan at shade dot org dot in about few details like the medical history, progress so far, funds collected Vs needed, the way to transfer the funds to your account etc.,

    Regards,
    Raghavan alias Saravanan M

    Liked by 1 person

  3. You might know about it already. If not check out Vice special episode on Cancer treatment using T cells. It’s very inspiring.

    Like

  4. Google search for “Polio Virus treats Brain Cancer”

    Clinical Trials for Adults |A Phase I Clinical Trial for Recurrent Glioblastoma Patients Opens for Accrual at the Preston Robert Tisch Brain Tumor Center
    Targeting Cancer with Genetically Engineered Poliovirus (PVS-RIPO)

    Matthias Gromeier, MD
    Associate Professor of Surgery (Neurosurgery) and Molecular Genetics and Microbiology
    Read more about Dr. Gromeier’s Lab

    Allan H. Friedman, MD, Study Principal Investigator
    The Guy L. Odom Professor of Neurological Surgery

    Many millions of dollars from grant and philanthropic funds have already been invested in this genetically-modified poliovirus work, and significant additional funds will be required to continue to move it forward. If you wish to donate to this important scientific advancement, please go to our online donation form.

    A Brief Background About PVS-RIPO.
    PVS-RIPO is a genetically engineered poliovirus that is being investigated as a new anti-cancer agent at the Preston Robert Tisch Brain Tumor Center at Duke. The idea of targeting cancer with viruses has been around for at least 100 years. However, valid strategies of using ‘oncolytic’ (cancer-fighting) viruses emerged only recently. This is mostly due to technological advances in genetic engineering of viruses.

    To work against cancers in patients, oncolytic viruses must target cancer cells for infection and they must kill them. At the same time, they must be safe. Accomplishing this is very difficult scientifically and only very few viruses are suitable as cancer-fighting agents in the clinic. We achieved this feat by genetic engineering to remove poliovirus’ inherent disease-causing ability (a piece of genetic code of a cold-causing rhinovirus was spliced into the poliovirus genome). PVS-RIPO naturally infects almost all cancer cells, because the receptor for poliovirus (which is used for cell entry) is abnormally present on most tumor cells. PVS-RIPO kills cancer cells, but not normal cells, because its ability to grow (and kill) depends on biochemical abnormalities only present in cancer cells. Safety testing in non-human primates and human patients has shown no nerve cell killing, no ability to cause poliomyelitis, and no ability of PVS-RIPO to change back to wild type poliovirus that can cause poliomyelitis.

    What is the Clinical Experience with PVS-RIPO? The FDA approved clinical trials with PVS-RIPO in brain tumor patients recently. Since May 2012, five brain tumor patients have been treated. Remarkably, there have been no toxic side effects with PVS-RIPO whatsoever, even at the highest possible dose (10 billion infectious virus particles).

    MRI of patient on Poliovirus trialThere have been very encouraging signs in patients treated with PVS-RIPO. The first patient enrolled in our study (treated in May 2012) had her symptoms improve rapidly upon virus infusion (she is now symptom-free), had a response in MRI scans, is in excellent health, and continues in school 9 months after the return of her brain tumor was diagnosed. Four patients enrolled in our trial remain alive, and we have observed similarly encouraging responses in other patients. One patient died six months following PVS-RIPO infusion, due to tumor regrowth.

    How Does PVS-RIPO work? PVS-RIPO is infused directly into a patients’ tumor (e.g. in the brain). This assures that the maximal amount of virus is delivered directly to the tumor. Once inside the tumor, PVS-RIPO infects and kills tumor cells. Although this tumor cell killing alone may have tumor-fighting results, the likely key to therapy with PVS-RIPO is its ability to recruit the patients’ immune response against the cancer. There are many events following PVS-RIPO infusion into the tumor that can contribute to such an outcome. The human immune system is trained to recognize virus infections and, thus, responds vigorously to the infected tumor. Unraveling why and how the immune system attacks tumors that were infused with PVS-RIPO is a major research goal in the Gromeier Laboratory.

    What are our Plans for the Future? Currently, Phase I clinical trials of PVS-RIPO against recurrent glioblastoma brain tumors are ongoing at Duke. We plan to extend these studies (Phase II/III) in a quest to establish PVS-RIPO as a possible therapy for brain tumors. In addition, PVS-RIPO has the potential to work for other types of cancers. The reason for this is that the mechanisms responsible for PVS-RIPO’s effects against brain tumors broadly apply to almost all cancers.

    Clinical Trials. There are several initiatives for further clinical development of PVS-RIPO:
    a) against glioblastoma brain tumors in adults. We are planning Phase II/III trials in patients with glioblastoma;
    b) against brain tumors in children. The mechanisms that make PVS-RIPO safe and efficacious in adult brain tumors also work for similar types of brain cancers in children. We are planning to investigate PVS-RIPO in children with brain tumors;
    c) against tumors other than brain cancers. Because PVS-RIPO naturally targets and destroys cancer cells from most common cancer types (pancreas, prostate, lung, colon, and many others), it can be directed against these cancers as well. To establish this in the clinic, we plan future clinical trials in patients with cancers other than brain tumors.

    What Do We Need to Make PVS-RIPO a Success Against Cancer? The key to better cancer care is a better understanding of the disease and the mechanisms that may work to fight it. We already have much information about PVS-RIPO, because of a very successful research effort in the Gromeier Laboratory that now spans >10 years. We will continue to identify why anti-tumor responses occur in brain tumor patients infused with PVS-RIPO and how we can best harness them for cancer therapy in general.

    Research currently ongoing in the Gromeier Laboratory is designed to a) explain why/how PVS-RIPO kills cancer cells selectively; b) unravel how the patients’ immune system responds to tumor infection with PVS-RIPO; and c) how this immune response fights the tumor itself.

    PVS-RIPO virus The structure of the PVS-RIPO virus.
    The Virus particle consists of a protein shell (blue, red and green shapes) arranged in a symmetric structure. In this image, the particle has been “cracked open,” to reveal the virus genome (yellow, pink), which is surrounded by the protein shell. The PVS-RIPO genetic code is based on the Sabin vaccine (yellow) with a piece of genetic information from a common cold virus spliced in (pink).

    A Statement on Eligibility for Enrollment in the PVS-RIPO Trial. The PVS-RIPO trial is available for recurrent glioblastoma patients with only one tumor. The tumor must be surgically accessible; the size must be no smaller than 1 cm and no larger than 5 cm, and the tumor must be located at least 1 cm away from the ventricles. Prior exposure to bevacizumab (Avastin) is permitted. For further information please contact the Preston Robert Tisch Brain Tumor Center at Duke at (919) 684-5301.

    Also, there are other advance research going on for Brain Tumer using Stem Cell therapy.

    Good luck and look forward to your comets r& speedy recovery.

    Printer Friendly Page Send this Story to a Friend

    Liked by 2 people

  5. Hello Yamini,

    I just read your article on the Washington Post site and could not help but find your blog. It’s not everyday that you find a story that stops you in your tracks because it happened to you. I was diagnosed with a malignant immature teratoma of the ovary in 2010. I underwent surgery and three rounds of chemo but now officially in remission. When my oncologist told me about the tumor I must admit I was a bit freaked out as was my family. The oncologist told us they found bone, teeth and hairs and we all just grew extremely quiet because we had no idea what we were dealing with. Also just like you I went from being an extremely healthy active 31 year old to not being able to function day to day. It was literally stealing the life out of me and it all happened within a short few months. After multiple visits to the doctors and my former gynecologist along with being misdiagnosed I ended up at a Gastroenterologist office begging her to find out what was wrong with me. She put me on a regimen and asked me to follow up in a month. A month later I was back and getting worse. She decided to order an ultrasound which only showed fluid so the radiologist decided to order an MRI. Sure enough my “evil twin” was right there plain as day hanging out on my ovary. I knew something was wrong and I refused to give in until someone anyone found out what it was. It was not until all of the studies and dissection were complete that it had a name. My oncologist told me only 1% of the population is diagnosed with this type of cancer. That was in 2010 I am sure that number had grown as more physicians are being presented with these cases and research that was not available then. I just want you to know that I have been where you are and I am happy you found a surgeon that took a deeper look and that you will make a full recovery! No one knows our bodies like we do. You have to listen to yourself and keep pushing physicians when you know something is wrong! Best of luck to you and the work you’re doing to bring awareness to this issue!

    Liked by 1 person

  6. my daughter had a germ cell tumor at age 8. While these are rare tumors, the location and type is not unheard of-most germ cell tumors are in the location yours was, or my daughters which was hypothalamic. She had surgery at Johns Hopkins in Baltimore-and not for removal, but just biopsy, then was treated with chemo/rads.
    There is a germcelltumor@yahoo group that is all germ cell families-some pure, some mixed. SO glad you are doing well now-your story is a good one, but I am sad you didnt get better initial treatment as this location is tough but there are a select few who “do it”, and the symptoms are common to this location-loss of hormones generally are included with surgery which brings its own set of issues…
    Best of luck to you.

    Like

  7. Hello Yamini, I just read about your incredible story on the Fox news website. I am so glad to hear you had a successful operation and are expected to make a full recovery! Thank the Lord for this and allowing you to find the great neurologist Dr. Hrayr Shaninian who performed your surgery. The Lord works his miracles through people like this.

    All the best.

    Like

  8. Yaminu, I have had a tumors on or in my optic nerves for the last few years. No one even believed it wasn’t migraines or me being over dramatic until my eye was paralyzed. Still not biopsiable or operable so not even Mayo Clinic Rochester can figure me out and it won’t stay gone with steroids or chemo. They called it Tulosa-Hunt til it spread past my cavernous sinus and it wasn’t…they like to test and retest for sarcoidosis but it never is…no one will call it lymphoma because it doesn’t seem to spread just assault my nervous system…I wish I could say it gets better but apparently that’s not always true. What else can you do but laugh? Good on you for doing this!

    Liked by 1 person

  9. I am so happy to read “http://www.washingtonpost.com/news/morning-mix/wp/2015/04/23/womans-brain-tumor-turns-out-to-be-evil-twin-complete-with-bone-hair-and-teeth/” and that you are now well! We need people like you who are so open, with intelligence and love to stay around. I am so glad those who could rallied to help you. Now you stand with a higher self and renewed life. A true gift! Many blessings for your future, which I hope is great. I also wouldn’t call it an “evil” twin, at all, but a forgotten one, who chose to be revealed to save your life. 🙂 So happy. Jai mata di! Jai sri Kirshna, hare hare Yamini!

    Kayla

    Liked by 1 person

  10. Hello,
    How are you doing now? Any residual issues? The scans were interesting. I’m glad you are raising awareness of the keyhole surgery, smaller is better! I had laproscopic surgery to remove a kidney. So glad I didn’t have to have the giant “horseshoe”.

    Liked by 1 person

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