Olfactory Neuroblastoma Resources

This site exists to share Olfactory Neuroblastoma resources to assist anybody interested in finding answers.Resources posted here should not be considered medical advise.These resources are sourced from the Internet and are for research purposes only.

Information

Media

Studies

Andrew's Medical History

Below is a summary of my medical history. My events and the doctors or hospitals that I have engaged with should not be considered medical advice.I am sharing my medical history to see if somebody else might realize a similarity! I have met many doctors in my journey and the medical information they receive from me and many others is compartmentalized. There are studies of rare tumors, but even those studies do not compare idiosyncratic elements. I have a hope that the small things might lend to an understanding of big things!

DATEEVENTDESCRIPTION
2022-10Scheduled Visit to MD Anderson for Scans
2022-08 to 2022-09Bloody Noses and Headaches
2022-07Visited MD Anderson for Scans
2022-07Bloody Noses and Headaches
2022-04Stereotactic Body Radiation Therapy3 Fractions of stereotactic body radiation therapy were administered to the 2nd tumor in the right sphenoid sinus.
2022-??Visited MD Anderson for Scans2nd occurence of Olfactory Neuroblastoma found in the right sphenoid sinus.
2021-12Bloody Noses and Headaches
2021-11Left Eye Went Black
2021-08MD Anderson, Houston, TXFound MD Anderson through Google Search
2021-02Blood Clot in Right Leg Calf AreaStarted Xarelto 20mg per day
UPDATINGUPDATINGUPDATING
2020-12-31 to 2021-01-09Admitted to Sarasota Memorial Hospital - Neutropenic FeverI flew back to my home in Florida to be with my family for Christmas after being away from my wife and daughter for 3 months. About 7 days after I returned, I realized that I was not in very good shape. I had a throat infection, no energy, and really bad neuropathy throughout my body. When I went to the ER, my blood levels were at the absolute bottom. They immediately admitted me and I received blood transfusions, platelet transfusions and around the clock IVs of antiviral, antifungal and antibiotic treatments. The worst part was having to get an NG tube due to a bowel obstruction. I'm pretty sure that the chemotherapy, immunotherapy and radiation knocked me down for the count! I didn't shower for a month and it took me numerous months to get back on my feet.
2020-10 to 2020-12Penn Abramson Cancer Center - Chemotherapy, Immunotherapy, and Radiation TreatmentsI began chemotherapy (Carboplatin and Etoposide), immunotherapy (Tecentriq), and radiation (32 fractions each to my left ethmoid sinus area and to my left and right neck lymph nodes).
2020-10Penn Abramson Cancer Center - DiagnosisMy situation was diagnosed as: High Grade Neuroendocrine Metastatic Cancer and I would have 1-2 years to live (Olfactory Neuroblastoma in my ethmoid sinus, cancer in the left and right lymph nodes of my neck, cancer in my lower three vertebrae, and cancer in the top of my right femur). I live in Florida and went to Penn due to the pandemic. I was not able to stay at any cancer centers for treatment because they all closed their housing. Thankfully, I was able to go to Penn Abramson Cancer center in Philadelphia where my brother and his family were able to drive me back and forth to the hospital over the next 3 months for treatment.
2020-10-14Moffitt Cancer Center - Tumor Pathology ResultsTumor confirmed to be an Olfactory Neuroblastoma. Moffitt Cancer Center reported on the pathology because Tampa General Hospital shared a tissue sample with them as a cooperating hospital.
2020-09-27Surgery Performed at Tampa General HospitalI underwent surgery (ethmoidectomy) to debulk a tumor in my ethmoid sinus that was wrapped around my left optic nerve and up against my carotid artery. Full removal of the tumor was not an option. I spent 7 days in the ICU after surgery.
2020-09-26Admitted to Tampa General Hospital and Surgery PerformedAs soon as I arrived, I went to surgery to have my sinuses scraped and tested. The results were negative for any type of infection.
2020-09-25Admitted to Sarasota Memorial HospitalI woke up on this day and realized that losing my sight and not finding any answers required me to be admitted to the hospital. Multiple scans were performed and I was sent to Tampa General Hospital the next day with the thought that I had some type of infection in my sinuses.
2020-09-24Visited Neuro OphthalmologistRetinal exam on left eye showed absolutely NO abnormalities! Doctor told me that the issue had to be further back in my head. It was suggested that I either get admitted to the Hospital or undergo a series of outpatient IV treatments.
2020-09-23Headaches Returned and Visited ERContinual headaches returned and pain behind left eye, especially, when moving the left eye. CT Scan was completed and showed no abnormalities. Departed the ER with no answers.
2020-09-21Retinal Exam with OphthalmologistLeft eye diagnosed as legally blind and retinal scan showed no abnormalities. I was referred to a Neuro Ophthalmologist.
2020-09-16Lost Vision in Left Eye, Headaches Stopped, Bloody Mucous StoppedNo pain was felt and I thought my eyesight would return! Headaches and bloody mucous disappeared!
2020-09-15Massive Painful/Cracking HeadacheA headache so massive that I had to hold my head with both hands and lay down. It was so painful that I thought my head would break and it lasted for about 20 minutes. Oddly, I felt fine after the incident!
2020-09-14Extreme HeadacheExtremely uncomfortable headache for about 20 minutes that left me holding my head until it ended.
2020-08 to 2020-09HeadachesHeadaches that would last for many hours and sometimes the entire day, but I could still function (Advil would rarely help). Also experienced incidents of extreme headaches that would last for 30 minutes or less about 1-3 times a week. Pain was felt around the outside area of my left eye. Sneezing was extremely painful when a headache was present.
2020-05 to 2020-09Continual Bloody Sinus BlockagesThe continual blockages of thick brown mucous turned into thick dark bloody mucous.
2017-11Lost Sense of SmellNo Ability to Smell
2015Upper Endoscopy found Esophageal UlcersStarted taking Dexilant 60mg Daily and started following a Low FODMAP Diet that also lead to a decrease of thick brown mucus in my sinuses.
2000 to 2020Continual Sinus BlockagesDaily sinus blockages of thick brown mucous that were very difficult to dislodge. Numerous visits to PCP and ENT doctors yielded no answers. I learned to irrigate with salt water, but that didn't work well to dislodge the mucous or fend against bacterial infections. Around 2005, I switched to a hydrogen peroxide and water rinse to dislodge the mucous and fend off bacterial issues.
1998AppendectomyRuptured retrocecal appendix was misdiagnosed for numerous days before appendectomy. Many dietary issues ensued after this situation occurred.
1995 to 1996High Pulse Rate Throbbing HeadachesDue to extreme exercise, I experienced throbbing headaches that caused me to lay down and bear the throbbing for 30 minutes or more. I consulted with a Neurologist who reviewed an MRI of only my brain, but no abnormalities were found. Could there have been something lower in the Olfactory Nerve!?!? Due to this issue, I have not exercised in an extreme manner since this time.
1995Tonsillectomy and AdenoidectomyTonsil crypts required manual clearing of debris on a frequent basis.
1992 to 1999Accutane4 seperate courses of Accutane.

About Andrew

I'm working on this... too many other things to do right now!

Send a Message to Andrew

Please feel free to send a message or share an Olfactory Neuroblastoma resource.

Thank You for Your Message

Send another message...

Help Andrew Get Treatment

All donations go towards travel, lodging and treatment expenses at MD Anderson Cancer Center in Houston, TX for Andrew S. MacIntyre.Due to the rarity of my type of cancer, I travel to MD Anderson Cancer Center in Houston, TX where I can receive care from doctors who specialize in the treatment of Olfactory Neuroblastoma tumors. My journey started in 2020 with Moffitt Cancer Center in Tampa, FL and Penn Abramson Cancer Center in Philadelphia, PA, but after general chemotherapy, radiation and immunotherapy, they gave up on trying to help me any further. Thankfully, I found the Doctors at MD Anderson who saved me from my 2nd Olfactory Neuroblastoma tumor. I visit MD Anderson every three months and will visit sooner if an issue arises, which has happened.

Send a donation through Zelle in two ways:
1. Send to Andrew@TheMacIntyres.org
2. Scan QR code in your banking APP

Thank You for Your Support!!!

Your donation is greatly appreciated by my entire family!

You have helped my family to bear the additional expenses related to my health issues that have become a struggle on top of our daily lives.

This site shares Olfactory Neuroblastoma resources as well as my medical history. Please share your resources with me.

Send a donation through Zelle in two ways:
1. Send to Andrew@TheMacIntyres.org
2. Scan QR code in your banking APP

PayPal Acceptance Mark

Send a donation through PayPal, Debit, or Credit