They say, “knowledge can sometimes be the best medicine.” It is in that spirit that I am providing links and pdf files to many of the resources that helped me through my diagnosis of stage IV metastatic parameningeal embryonal rhabdomyosarcoma. I was 26 at diagnosis and the primary tumour was in the pterygopalantine fossa (4.5 cm in sinus/head area) and with spreading to the lungs (10 tumors of 0.5-1.5 cm). These measurements are based on scans 2.5 months before treatment started. Although embryonal rhabdomyoscarcoma has a more favourable prognosis in children, this is not reflected in the studies about adult embryonal rhabdomyosarcoma.
Much of the information I have gathered over the years (thanks to the help of people like Mimi Olson on Rhabdokids listserve and special access to UCLA Library's extensive medical database) reflects the interests of my journey and the demands of my circumstances.
I hope some of the fruits from my struggle will maybe help newcomers to Rhabdo.
However, as we quickly learn, just as cancer is actually a name for thousands of different diseases with individual particularities, sarcoma and rhabdo are also umbrella terms for a range diseases and conditions. However, I hope the articles I’ve provided here (on Chemotherapy, Radiation, Head and Neck locations, Relapse, Stem Cell, and Lung Issues) may help others coping with similar diagnoses. The treatment and prognosis for many sarcomas remain unfavourable, and it was my inclination to learn as much as I could on the various options for treatment. I felt more empowered as a patient and I also found it to be an effective coping mechanism.
The majority of articles provided are copyright protected and usually require special accounts to view. They are provided here for free as a purely educational resource for patients (hoping Big Brother leaves me alone and allows this).
However, I must warn those who are unfamiliar with medical journal articles. The language can often be difficult and the conclusions can sometimes seem grim. Reading rationally, with scrutiny and caution and patience (and hopefully with a basic understanding of statistics) is recommended but can be very difficult if you are the patient or caretaker. The last thing I want to do is to is inspire misguided hysteria or make doctors' jobs all the more difficult with confused appeals from frantic patients.
On the contrary, these resources are meant to provide a spring board for a patient’s (and their caretakers') understanding to all things rhabdomyosarcoma. You can always access more medical journals by searching abstracts at Pubmed and taking this information to your closest university or medical library to acquire the full articles. As in any crash course on any subject, pace yourself to your own abilities and limitations and seek help when needed.
The article titles are listed, but the dates and journal publications are not. The majority are from the last decade. You must click on each link to pull up the pdf for the dates and other details (or copy and paste it into google and it will lead you to the pubmed abstract).
My treatment choices were greatly influenced and redirected by the information I acquired in a number of the articles posted here, and to which I think I can partially credit my continued survival. I hope they can do the same for others.
My journey has been long and is not over; it has been filled with both mistakes and triumphs. I am deeply grateful to be one of the few adult survivors of metastatic rhabdomyosarcoma. In 2006, the personal websites and board posting from adult rhabdo patients were grim to say the least. Most of those patients have now passed on. But I'm here to say there are survivors. Many do not post websites or board messages, but they are out there. I hope that newly diagnosed patients will increasingly experience better outcomes because of greater access to information like this and the growing strength of our cancer communities.
Warm wishes for hope and healing,
Grant Tyler Peterson
May 2011
Summary of my Treatment History
Jan/06: 26 y/o male, otherwise in great health presented with left unilateral neuropathy and pain in chin, tongue and cheek. Quickly spread up side of face over a month. Sought MRI but got denied by A&E (UK ) and NHS neurologist until March.
Mar/06: UK MRI shows 4.5cm x 2.5cm mass in pterygopalatine fossa
Apr/06: Southmead Hospital in Bristol Endoscopic biopsy results: leiomyosarcoma. CT of chest shows 10 tumors. Many problems and delays getting a specialist oncologist in the UK. Leave for US for treatment and to be with family.
May/06: Re-diagnosed by UCLA as embryonal rhabdomyosarcoma. Began Adriamycin (Doxorubicin), Etoposide, Vincristine, Ifosfomide (as well as Zometa -a bisphosphonate - once a month) under Dr. Sant P Chawla in Santa Monica. Tumors begin to shrink.
June-Aug/06: Conventional external beam radiation harboring the tumor to 5040 cGy in 28 fractions over 38 days under Dr. Lisa Chaiken with concurrent Ifosfamide and Vincristine. Tumors continue to shrink.
Aug-Jan/06: Returned to chemo with cycles of Adriamycin (Doxorubicin), Gemzar (Gemictacine) and Taxotere (Docetaxel) and Zometa (bisphosphonate). Lung tumors reduce to 7, then 3.
Feb 12/07: Self-Elected endoscopic debulkment/biopsy operation by Dr. Wang at UCLA. Through nose and maxilla. Maxillary and pterygoid test negative, but a section taken off a mass tracking up the infra-orbital nerve tested positive for a 3mm focus of viable tumor.
Mar-June/07: Re-induction of chemo, inpatient of Etoposide and Ifosfomide (one cycle). Outpatient Irinotecan and Vincristine (two cycles). Lungs are tumor free and scans of head show improvement in sinuses and suspicious small masses are stable. Overseen by Dr. William Tap at UCLA
July 2007: Finished chemo but Zometa (bisphosphonates) continued 1x/month. Also began two year injection regime of Intron A, Interferon 3 MIU 3x/week and Leukine (sargramostim) 2.5 unit 2/week.
Oct 2007: Symptoms of Osteonecrosis of the Jaw (ONJ) begin in left maxilla.
Jan-March 2008: Bisphosphonate-induced ONJ is diagnosed and Hyperbaric Oxygen Chamber Treatments (50) begin.
March-Aug 2008: Root canals of left maxilla teeth.
November 2010: Removal of left maxilla and teeth. Obturator fitted. ONJ appears stable.
As of May 2011: Consistent Stable Scans for Cancer follow-ups.
They say, “knowledge can sometimes be the best medicine.” It is in that spirit that I am providing links and pdf files to many of the resources that helped me through my diagnosis of stage IV metastatic parameningeal embryonal rhabdomyosarcoma. I was 26 at diagnosis and the primary tumour was in the pterygopalantine fossa (4.5 cm in sinus/head area) and with spreading to the lungs (10 tumors of 0.5-1.5 cm). These measurements are based on scans 2.5 months before treatment started. Although embryonal rhabdomyoscarcoma has a more favourable prognosis in children, this is not reflected in the studies about adult embryonal rhabdomyosarcoma.
Much of the information I have gathered over the years (thanks to the help of people like Mimi Olson on Rhabdokids listserve and special access to UCLA Library's extensive medical database) reflects the interests of my journey and the demands of my circumstances.
I hope some of the fruits from my struggle will maybe help newcomers to Rhabdo.
However, as we quickly learn, just as cancer is actually a name for thousands of different diseases with individual particularities, sarcoma and rhabdo are also umbrella terms for a range diseases and conditions. However, I hope the articles I’ve provided here (on Chemotherapy, Radiation, Head and Neck locations, Relapse, Stem Cell, and Lung Issues) may help others coping with similar diagnoses. The treatment and prognosis for many sarcomas remain unfavourable, and it was my inclination to learn as much as I could on the various options for treatment. I felt more empowered as a patient and I also found it to be an effective coping mechanism.
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