|Prepping for Transplant#1|
Well, even if you've never wondered, you're going to get it. I tried not to go into too much detail, some of the dates are fuzzy, some chemotherapies maybe missing. Radiation dates may be off. I left out my multiple septic infections. No itemized sheet of symptoms and treatment could adequately portray all the suffering I have endured.
Keep praying for a cure. No one should have to suffer the way I have.
Birthday: Aug. 16, 1982
|Day 0 for my syngeneic transplant|
Born: Claremont, NH The second of a set of twins. Apgar: 0 and 1 due to wrapped chord with fetal heart loss. Delivered high forceps with resulting skeletal fracture. Estimated time without vital signs 20 min+ Shipped to Dartmouth ICU due to seizures, discharged 3 weeks later with little residual effects from cerebral palsey. Two years later twin controlled study shows no deficits.
Childhood: Freq. ear & sinus infections & strp throat. Removal of tonsils and adenoids.
Highschool & college: migraines
March 2003- Healthy full term pregnancy
July 2005: vague viral disease with extreme fatigue resulting in a 4 week "vacation"
|Recovering Well: 100 days Post transplant|
Dec. 2006: upper Respiratory Illness where blood tests shows no immune reaction, Starting with Type B symptoms, swollen, palpabable lymph nodes, extreme fatigue, sweats.
Nov. 2006: Diffuse swollen lymphnodes appear. They also appear similarly on my son. Suspect "cat scratch fever."
Jan. 2006- Increase in symptoms with weightloss, nausea, vomiting. Begin seeking local Dr. advice.
April 2006- Diagnosed via biopsy with Hodgkin's Lymphoma
May 2006- Started ABVD therapy
|July '08 feeling great using supplements|
July 2006-Cancer Re-occurs, Perioheral stem cell transplant recommended with the possibility of using identical twin's marrow
Sept- Pre-transplant preparation therapy: ASHAP, MOPP, Mini-BEAM
Jan. 2007- Syngeneic Transplant using twins cells
Feb. 2007- Sudden respiratory failure, intubated 7 days, no known cause.
July 2007- Radiation per protocol
Sept. 2007- Recourence outside the previously radiated area. Radiation directed to lymphoma.
Nov. 2007- Reoccurence, again, outside previously radiated area. Radiation directly to active disease.
March 2008- PET reveals active disease is in the spleen and other previously radiated areas. A mini-allogenic at Dana Farber with Ted Alyea is recommended.
Seeking second opinions: Dana Farber, Memorial Sloan and Kettreing, Dr. Harold Clark, Dr. Ursula Jacob
April 2008 started complementary regimen:
These medications include:
|Recovering from the LDH study with J, who had a|
bowel resection for Crohn's
Ultra Hepa Trope II 2 tabs twice daily (liver detox), The foundation for the function of these uniquely formulated nucleoprotein-mineral extracts comes from the antigen-antibody reaction that takes place during normal cell maintenance. The antigenic properties promote healthy cellular division, function, and growth. When a tissue needs support, at least a dozen different compounds are formed that can cause white blood cells to travel together toward the compromised area. They include degenerative products of the tissues themselves. These substances strongly activate the macrophage system, and within a few hours, the macrophages begin to devour the destroyed tissue byproducts. At times, the macrophages can also affect the structure of the remaining healthy cells. The bovine liver PMG™ extract in Hepatrophin PMG appears to neutralize the circulating antibody, thereby contributing to the maintenance of cellular health.
Quercitin-C 2 tabs twice a day after meals (Maintains blood vessel integrity • Decreases sensitivity to allergens • Reduces swelling and pain of arthritis • Promotes circulation • Reduces your risk of certain cancers •Antibacterial properties •Protects the skin from UV damage. See http://www.highlifeformulas.com/quercitin-c.htm)
Ctyozyme AD 1 daily (Source of neonatal bovine adrenal. Consider with chronic fatigue, reactive hypoglycemia, craving for salt, lowered resistance, flu, colds, hypotension, inflammation, lack of ligament strength, ridges in the fingernails and an inability to work under pressure),
|Fall 2008: Keeping things normal, coaching X|
(Standing far left with Vic, my Dad)
Berberis Homaccord 10 gtt .5 hr before other meds BID (For the temporary relief of minor inflammation and irritation in the area of the urogenital tract including cramping, colic and discomfort. http://heelusa.com/) Dr. Lui of the Marino Center in Boston recommends the use of this as a natural anti-inflammatory to ward off cancer.
XRAY 30C 3 pellets sublingual (under the tongue) Twice daily. Remedy works not only for exposure to radiation, but also stimulates cellular metabolism and can perk up behavior and vitality, especially after anesthesia. Avoid using potencies less than 30c or greater than 200c unless you are looking to do comprehensive treatment, as they can bring to the surface other problems which have been suppressed.
Bio 93 10 drops .5 hr before meals 3x daily, and Bio 88 .5 hr before meals 3x daily (both from http://www.reckeweg-india.com/).
July 2008- Hodgkin's regressed from PET scan in May with no other treatment intervention than daily standard protocol meds and the above medications, almost disqualifying me for a trial study to prepare me for my tranasplant.
|O2 dependent after an open lung biopsy|
due to Bronchiolitis obliterans
July 2008- Stopped previous protocol and joined Phase I clinical study of LDH-135 with resulting remission.
October 2008- Mini-allo transplant at Dana Farber.
FEb. 2009- GVHD of the mouth, skin, and eyes begins
March 2009- Prednisone is given for GVHD with relief
April 2009- PET shows possibility cancer has returned
August 2009- began chemotherapy regimen, including gymcytobeam, need to check on what other agents received. Begin experiencing extreme shortness of breath.
Aug.-Dec 2009- Inability to breathe continues with freq. hospitalizations. Open lung biopsy reveals nothing.
Dec. 2009- DX with bronchiolitis obliterans, placed on prednisone and zithromax 250mg daily along with Bactrim previously prescribed.
Jan 2010- Begin photopheresis using uvidex in hopes of halting declining lung function. Using a 6 month protocol: twice weekly for four months, once weekly for four weeks, and then bi-weekly x 2 doses with improvement of lung function, gvhd of the skin and mouth
June 2010 (date may be off)- cancer comes back again. Goal is now to controlling the disease for the greatest quality of life for the longest possible time.
August- Began velbam treatment
|May 2010: On heavy steroids & photopheresis Celebrating|
Patrick's college graduation.
Sept- Recognizing conventional therapy has assisted my lung function as best as possible, leaving me often in a wheelchair, gasping for breath I exercise in hopes of functional improvement. I no longer use oxygen or require a wheelchair for anything other than fatigue. I can again play soccer, basketball, and baseball with my son.
October/November: begin experiencing ideological bone marrow suppression. Bactrim changed to mepron. Diagnosed with PE, placed on Lovenox. diagnosed with addison's Septicemia due to central line infection.
Dec. 2010- Began a treatment holiday.
Jan. 2011 velbam restarted. After two doses, I go septic, again
Feb. PET scan is ordered to re-evaluate disease process. Hodgkin's active throughout my abdomen causing hydronephrosis of the left kidney.
Scheduled to start bendamycin March 14th
Ativan 1mg q 4 hours
|Dec. 2010: Still celebrating during a treatment "holiday."|
Ambien 5 mg q HS
Marinol 2.5mg q 4 hours
MSIR- 30mg Q 4
Ritalin 5mg repeat x 2 as needed, do not take past 2pm
Sennakot, dulcolax, or immodium
Currently: Levaquin 750mg x 10 days
Lovenox 100mg subQ daily
Mepron 10ml/1500mg PO daily
Lexapro 20mg PO Daily
Kineret 1gtt to the left eye 3x daily
Prednisone taper- 10mg Po in am, 5mg PO in the afternoon.
MS Contin 60mg 3xdaily
Synthroid 25 mcg daily
Caltrate 2 pills
Folic Acid 1mg PO Daily
|Me with College BFFs Lauren, Daisy, and kiki|
Celebrating or 3rd Winter Carnival together
Famcyclovir 500 mg 2x daily
Zithromax 250mg PO Daily
Omeprazole DR 20 mg daily
K+ 10 MeQs Daily
Flonase 1 puff per nostril 2x daily
This is complete to the best of my knowledge. I have also altered my diet, trying to eliminate refined sugars and eating as close to the food chain as possible. However, I grew up eating locally grown meats, veggies, fruits, etc. from our family farm.
And what's the best, #1 treatment advice I'd give out: Never stop living. Keep teaching. Keep coaching. Keep doing what you love. Never stop enjoying life, even if it has to be enjoyed from a hospital bed with a tube in your chest.