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). 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 circumstances.
I hope some of the fruits from my difficult struggle will maybe help newcomers to Rhabdo.
However, as we quickly learn, just as cancer is actually a name for thousands of individually 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 that much of the language can be difficult, not to mention the conclusions often grim. If you are not familiar with fundamental statistics or with scientific and medical principles, you may lack the helpful intrepretive skills to best understand the artilces in an appropriate perspective. Reading rationally, with scrutiny and distance, with caution and patience can be very difficult if you are the patient or caretaker. The last thing I want to do is to is cause misguided hysteria in any potential readers or make doctor's 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. And 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 dramatically influenced and redirected by the information I acquired in a number of the articles posted here, and to which I think I can 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. In 2006, the websites about adult rhabdo patients were grim to say the least. Many of those patients have now passed on. I am deeply grateful to be one of the few adult survivors of metastatic rhabdomyosarcoma. 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
March 2010
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 4cm x 2.5cm mass in pterygopalatine fossa
Apr/06: Southmead Hospital in Bristol Endoscopic biopsy results: leiomyosarcoma. CT of chest shows 10 sub-centimetre tumors. Many problems 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. Begins Adriamycin, Etoposide, Vincristine, Ifosfomide (as well as ZOMETA- 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: Returns to chemo with cycles of Adriamycin, Gemzar and Taxotere 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 small 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. Dr. W. Tap at UCLA
July 2007: Finished chemo but Zometa (bisphosphonates) continued 1x/month. Also put on two year injection regime of Interferon 3 MIU 3x/week and Leukine 2.5 unit 2/week.
Oct 2007: Symptoms of Osteonecrosis of the Jaw (ONJ) begin in left maxilla.
Jan-Feb 2008: Bisphosphonate induced ONJ is diagnosed and Hyperbaric Oxygen Chamber Treatments (50) begin.
March 2008: Root canal of 1st bicuspid – (# 12 or 2/4 ) and # 13 and return to HBO
July-Aug 2008: Root canal of #s 11 &14 and received a few HBO treatments.
Aug/08 – Jan 2010: Consistent Stable Scans for Cancer follow-ups. Relatively stable ONJ. Researching surgery options, and dental replacements.
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). 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 circumstances.
However, as we quickly learn, just as cancer is actually a name for thousands of individually 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.
