Hillary's Health History

Prepping for Transplant#1

I don't know if any of you have ever wondered what exactly I have undergone, healthwise, from the beginning of my life until now.


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

Current Medications:

PRN: 

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

Albuterol Inhaler

Daily meds:

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.

Dad's Update

Hi All The family is headed to a Disney World Family Vacation. Pat and Grace are the only ones that won't make it. We look forward to getting out of the deep snow and very cold weather we have had the winter. We have the 3 grand sons,Pierce-3, Preston-1 and Xander-7 turning 8 on March 8th. Heather and Hillary, John and Allen, Dick and Jean Wilder- (Great grand parents) and Nancy and I. We have learn to celebrate life whenever you can. We are even keeping Xander out of school for the week. The economy is awful but when will it get better? We all grow up so fast. We are staying right at Disney so we can save  energy for fun. The coldest day on the forecast is 75.Now for the rest of the story. Last friday Hillary got the results from her latest PET scan. You guessed it, it has grown again. The chemo she has been on is not stopping it. Monday, after we get back from Florida she starts another type of chemo treatment that she has not had before. ( I think they are running out of types). Its 2 days of chemo then 4 weeks to recover from it then do it again. We have no idea how she will react to it. This week she celebrated her 5th anniversary of finding the cancer. Not much to party about.This week she has stayed in bed most of the time. Pneumonia tends to tire you out. She is determined to save all her energy needed to see Xander enjoy his 8th Birthday at Disney World. You might start to ask why would she fly or leave home when she is so susceptible to sickness and disease. I can answer that simply by saying if not now, when? Or more directly, is life worth while if you have to spend it resting all the time? Lets get out and live life while you can, you can't live forever. Since Thanksgiving she has been as healthy as she has been in about 2 years. We took the chance that the light chemo would improve her quality of life and it has. Now we will move on to the next trial. Hopefully it won't be too bad. You just never know whats ahead.Well we won't think of you guys up here in the cold. We are just going to have fun. Jon is running the schedule. He is an engineer and everything has to go perfect, systematically. Boy is he in for a surprise. We are worse than herding cats!Next update I will work on sending PicturesThanks for all your prayers and support.Vic Nancy, Patrick, Grace, Preston Pierce, Allen, Heather, Xander, Jon and especially Hillary--

A Life Worth Living

One of My first experiences with cancer happened when I was in the fifth grade.

My friends', a set of twins, mom was battling leukemia. She'd had several transplants, and she was going for a third in Seattle. 

The two of us share similarities, one being, I'm told since her picture is vague in my head, that I look very similar to she had.

Lynn was married with four young children ranging from 4 years old to 14. She'd been an RN in her "previously life" before her diagnosis.

She also lived within the radius of our suspected "cancer cluster" that began 20 years ago.   

Also like me, Lynn couldn't hold her health insurance when she was not working and Her husband was self employed as a carpenter.

 Even 15 or so years ago, the same problems I have now existed. 

Her transplant would cost more than $200,000 of money the family did not have. 

Luckily, The community rallied in support, raising money so the family could travel together. The kids, now grown, and still much loved friends, remember sleeping in hospitals like sleepovers.

They reassure me, for X's sake, that they only remember the good times.         

 I don't remember anything regarding her treatment or even her being sick.  I remember her looking healthy and smiling. I remember going apple picking and talking to the twins on the phone nightly.  

 I also remember conversations I was not supposed to be privy to at the tender age of 10, but I overheard it anyway and what I heard shocked me.

There were whispers about how the family had used the donated money inappropriately, that it should have been used to put food on the table for her children.

What had Lynn done that was so inappropriate?

After the third transplant had clearly failed, but while she was still in relatively good health, Lynn and her husband to an escape to Hawaii.

 It must have been on her "bucket list."  Maybe, the couple wanted a final memory, a last goodbye, closure to a marriage that ended far too soon.  I remember empathizing with her decision.

"How could she?!" people whispered, "when that money was to be used to put food on her table!"

 I still remember those words.

 I still remember thinking, "She's dying. Can't a person get a break?" 

This judgement placed upon her while she suffered has haunted me since overhearing the conversation as a ten year old. Who knew it would be a defining moment in my life? 

It absolutely haunts me now that I've been in her position so many times, feeling bankrupt, stressed and crying when I know that is also bad for my health.

I greatly appreciate everything anybody has ever done for me or my family, but I know this may come with a price. I'm hurt by the possibility that judgements like this may be passed upon me.

I am trying to live my life transparently to repay all those who have helped me. I advocate, write and work so the world will hopefully be better, be cancer free, and that no one will have to beg their community for assistance or feel guilty taking what could be a fabulous memory in a life cut short too soon.

Lynn was fortunate to have the many loved ones who granted a final wish and made her life comfortable towards the end. 

And I understand her choice, I know if I stop doing what I love, what we dreamed of doing as a family, I am not a survivor. The cancer has won. It has taken my life, it just hasn't killed me yet.

 What I am doing in fighting my cancer is fighting for a life worth living.  

I'm singing like nobody is listening. I'm dancing like nobodies watching, and I'm loving like I'll never hurt. 

I am so happy to have made it this far, and I'm so thankful to all the people, too many to ever mention, that has made this possible.  

Protecting their True Interests: The EPA and Libby, Montana

Welcome Baldies' First Guest Blogger: Krista Peterson

  Health care reform may be dominating the media, but the recent call for reversing health care reforms are not the only government actions that threaten the health and safety of millions of Americans. While the refusal to support those seeking lifesaving health treatments is certainly appalling, failing to initially protect individuals from health threats is yet another strike against our government of late. Specifically, the EPA’s failure to act in the best interests of Americans and protect citizens stands out as one of the most prominent issues of political and fiscal concerns.

Despite the EPA’s slogan advertising “40 years of protecting health and the environment,” recent developments have exposed discrepancies in that promise. Best exemplifying that failure, the EPA has not properly alerted as many as 35 million homeowners of a dangerous carcinogen they might have in their homes. 

That material, known as Zonolite insulation, was produced in Libby Montana for decades, despite an internal 1982 EPA report warning of the dangers of this material. That mine remained open an additional eight years because of the organization’s unwillingness to take action and publish the report. Eventually, as the years accumulated, the EPA’s poor handling of the situation became even more dangerous to the organization as more and more individuals became sick.

Today, more than 400 deaths in the small settlement of Libby have been attributed to the mine’s production of this material. What makes Zonolite so dangerous is that the primary material used in its production, vermiculite, was contaminated with asbestos fibers. When individuals are exposed to asbestos, the material can embed in the tissue surrounding organs, leading to the development of a cancer known as mesothelioma. Unfortunately, mesothelioma symptoms remain latent for 20 to 50 years, often appearing only in the cancer’s later stages, making treatment difficult.

However, the EPA’s inaction has not only devastated the small town that mined for the material, but the millions of homes that potentially hold this particular brand of insulation in their walls and ceilings. From 1919 to 1970, more than 70% of all U.S. vermiculite produced came from this mine in Libby. Actions such as the EPA and federal government’s funding for winterization in homes, which involved the use of large amounts of insulation, indicates their responsibility in spreading this threat, helping to explain their hesitancy to alert homeowners.

As more and more Americans begin to exhibit symptoms of mesothelioma, we must face the reality that our government cannot always be trusted to fulfill its responsibilities to citizens. This situation, growing from one small town’s tribulations to a national catastrophe, represents yet another example of our government’s unwillingness to take action until the situation becomes too great to ignore. The EPA’s clear downplaying of the situation that began in Libby and has since spread across the country is completely overshadowed by painful realities, such as the devastating mesothelioma life expectancy those infected with this toxin can expect.

http://www.bitsofnews.com/content/view/6852/

As a nation, we must not content ourselves to silently accepting the government’s failure. After witnessing the EPA’s efforts to transfer responsibility to individuals, instructing visitors to Libby to simply “leave it alone,” we must hold our officials responsible for their failings. With the last three EPA administrators promising to issue formal warnings of the situation in Libby yet doing nothing, we must realize the time to wait for our government to account for their mistakes is over. As illustrated by this national disaster, we simply can no longer afford to let the government tell us to breathe easy while we choke on the lies that attempt to free them from responsibility.   

Krista Peterson is a 23 year old recent graduate from the University of Central Florida. She is an aspiring writer focusing her passion on the health and wellness of communities. Krista uses her writings to spread awareness of modern health issues and seeks inspire others to take action. 
Her passion comes from her family, some of whom have been diagnosed with cancers and other illnesses. 
In her free time, I enjoy reading, writing, doing yoga, and spending time with my family and 3 dogs.

Long Time and no post, I've been getting ready to travel to FL while battling off pneumonia. I had to allow myself to become sick and hope that I would come through feeling better on the other side. I am feeling better, but I'm still ill.
My meds are packed, my clothes, toiletries, Xanders clothes, etc.,etc. etc.
My kidneys have continued to function well this week, so I have the okay to take the vacation.
I will go have a great time with my extended immediately family. I can't wait.
I may post periodic updates.

I have Cancer, and yes, I've tried that

From the moment of announcing your diagnosis, some well meaning, and other not so well meaning, family, friends, co-workers, acquantainces and strangers will have some suggestion for your possible cure.

 Believe me, in the past 5 yrs, I've heard of many, sampled most for a reasonable (3 month) time frame, and completely disregarded others. 

But the disregarded list is not as small as many as you would think. If powdered shark cartilage could be my cure, I'm giving it a chance.... if I can afford it. 

Because that is how science works, that is how new ideas become concepts and then therapies. It must first start as a somewhat absurd idea. 

 These include antioxidant nutritional shakes, aspargus or aspargus powders, native american teas along with vitamin supplementation    (of what, how much and how many, no one can agree).

You'll even hear of "anti-cancer Diets."

But what exactly is that?

 You can use an anti-inflammatory diet or the Budwig diet, named after a famous MD/Patient, or a combination using your blood type to determine what you should eat and supplements to take. 

It's all so confusing. 

And the options go on and on and on often to be researched, patient-to-patient from experience to experience, but never get documented to officially share and compare.

One source of this sharing is "The Lymphoma Boards" where similar patients can share their personal stories, therapies that have tried and failed or suceeded.

From what I hear, it's like an online support group. Anybody with this address please comment and post it. 

For now, it's Patients sending tales of different cures in Mexico, germany, India or China. 

This fuels our hope. We want to find a cure.

If science wants to find the cure as well, watch what a cancer patient does as their life is being threatened and mimic it. 

Bring all the information together and share it. 

As exhausting as sugestions can be, I never stop listening to these suggestions. 

Not only because finding a cure is my greatest hope, but because that's how science works. That's how knowledge evolves, new ideas created, and improvement happens. 

Please share your ideas. Remember, I am not a practitioner. I am a former nurse that can provide guidance. I do not reommend using an either/or approuch to therapy, but a combination of standard and complementary therapies which allows you to live your best life.

My most effective complementary regimen was this:

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),
 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/).


Please remember I am not a practicing health care professional. I'm just a patient who wants other patients informed.

Calling All Readers: This APB's for you. 

If you have a personnal story from any perspective I am interested in  sharing your view HERE.

Those who wish to remain anonymous can post safely via the comments section.

 Even if you'd like to be identified, you can share your story via comment, just remember to share your name, city/state, facebook link, or email, especially if you'd like to be contacted to do more advocating in your area.

 For a formal guest spot: Send the information directly to me at hill.stpierre@gmail.com. Please attach a picture and short biography you would like used as an introduction.

I appreciate all views, please keep comments cordial and respectful.

PAINT THE TOWN PURPLE!!

2nd Annual 

Paint The Town Purple Week

Feb 28-March 6th

Benefiting Claremont, NH's Relay For Life

Today: Tuesday March 1st

Totally Tubular Tubing 

Arrowhead Ski Area,

18 Robert A. Easter Way, Claremont 

6-9pm 

All Tubing and Lift Ticket Sales Benefit

Relay For Life

Ski Pass $5 ~ Tubing $8

Combo Pass also available

Weds. March 2

Dinner at Pizza Hut

227 Washington Street, Claremont

5-8 pm 

Top off the week with a great dinner with family and 20% of your bill will be donated to Relay!

Thurs. March 3

 Glow Bowling Party

Maple Lanes

125 Maple Avenue, Claremont

7-9pm

3 strings & Shoes $12

- Check out our web site www.relayforlife.org/claremontnh -  

Or call Marion @ 542-6955, Denise @ 802-484-9074, or 1-800-ACS-2345

For updates and additions to this schedule or for more information on any of the listed events.

Thank you for your support in the fight against cancer!