Dr. L. Deleon Category

Tuesday, January 26th, 2010

Test Results – Tumor Markers #9

My PCP‘s office called with my my lab results…

Last Friday (Jan 22 2010), I had the bloodwork drawn to track my tumor markers. It was draw #9. I’ve been having pretty good results to-date, some ups some downs, some increases, some decreases – all within acceptable margins…

However, I’ve had a lot of unexplained aches and pains, especially breast and bone pain, and been battling stress and depression which I was – am – sure effected my health. So I’ve been Very scared of these results…

Very Scared.

This blood draw was for the monthly tests (most specifically my CEA Tumor Markers).

* April 15, my baseline CEA tumor markers were 63.1 ng/mL (nanograms per milliliter). This is High, as Norm is 0.0-3.0 ng/mL.
I honestly don’t know how high “really high” is, but – in my internet searching – I read one gal talk about the mid-200′s, so I guess my high is not That high, but It’s High To me.
* June 03, my 2nd draw CEA tumor markers were 35.9 ng/mL
* July 03, my 3rd draw CEA tumor markers were 12.8 ng/mL
* August 27, my 4th draw CEA tumor markers were 3.9 ng/mL
* September 18, my 5th draw CEA tumor markers were 3.3 ng/mL
* October 16, my 6th CEA tumor markers were 3.2 ng/mL
* November 20, my 7th CEA tumor markers were 2.7 ng/mL
* December 18, my 8th CEA tumor markers are 2.8 ng/mL

* January 22, my 9th CEA tumor markers are 3.1 ng/mL
This is a .3 INCREASE from last month, and puts me just above the normal range…

Dr. Khan has reassured me that this small increase is nothing to be concerned about, so I will TRY not to worry… Yah, right.

As always, I’m unsure, but this (CEA: The Test) continues to answer Some of my questions…

My Other Numbers as of January 22 2010 blood test results:

* CA-125: 12 U/mL (Reference @ 0-35)
a 2 point DECREASE – down from 14 U/mL from December’s draw… I am well within normal range.

* CA 15-3: 16 U/mL (Reference @ <32)
a 4 point DECREASE – down from from 20 U/mL from December’s draw; I’m well within the normal range.

* CA 27.29 (see CA15-3 above): 27 U/mL (Reference @ <38)
a 4 point DECREASE – down from 31 U/mL from November’s draw. This decrease makes me very happy!

The CA 27.29 test is used to monitor your:

  • Response to treatment
  • Status of your cancer
  • Possibility of early recurrence

With all the aches and pains I’ve been having
With all the stress and depression I’ve been fighting
I’ve been Very Very worried…
But these results help ease my mind.

Taking a breath
Relaxing
Destressing
Its all good…
It Will Be Good.

Visualizing my Dragons
My Warrior Dragons
Burning

Never Stopping.

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Posted in Burzynski Clinic, Coping, Dr. A. Khan, Dr. L. Deleon, happiness, Results, Stress, Tests, tired | 3 Comments »

Wednesday, December 23rd, 2009

Test Results – Tumor Markers #8

My PCP‘s office faxed my lab results…

Last Friday (Dec 18 2009), I had the bloodwork drawn to track my tumor markers. It was draw #8. I’ve been having pretty good results to-date, some ups some downs, some increases that I am concerned about…

This blood draw was for the monthly tests (most specifically my CEA Tumor Markers).

* April 15, my baseline CEA tumor markers were 63.1 ng/mL (nanograms per milliliter). This is High, as Norm is 0.0-3.0 ng/mL.
I honestly don’t know how high “really high” is, but – in my internet searching – I read one gal talk about the mid-200′s, so I guess my high is not That high, but It’s High To me.
* June 03, my 2nd draw CEA tumor markers were 35.9 ng/mL
* July 03, my 3rd draw CEA tumor markers were 12.8 ng/mL
* August 27, my 4th draw CEA tumor markers were 3.9 ng/mL
* September 18, my 5th draw CEA tumor markers were 3.3 ng/mL
* October 16, my 6th CEA tumor markers were 3.2 ng/mL
* November 20, my 7th CEA tumor markers were 2.7 ng/mL
* December 18, my 8th CEA tumor markers are 2.8 ng/mL
This is a .1 INCREASE from last month, but still has me within the Normal range.

As always, I’m unsure, but this (CEA: The Test) continues to answer Some of my questions…

Still hoping that this all means Something Good… I can’t help but be cautious cuz the other shoe always falls for me. Always.

My Other Numbers as of December 18 2009 blood test results:

* CA-125: 14 U/mL (Reference @ 0-35)
a 3 point INCREASE – up from 11 U/mL from November’s draw… I’m not happy, but am still well within the normal range, in fact is very low normal range. But another increase Does worry me.

* CA 15-3: 20 U/mL (Reference @ <32)
a 1 point DECREASE – down from from 21 U/mL from November’s draw; I’m still within the normal range.

* CA 27.29 (see CA15-3 above): 31 U/mL (Reference @ <38)
a 4 point INCREASE – up from 27 U/mL from November’s draw. These increases scare me, though I am still within (high) normal range.

The CA 27.29 test is used to monitor your:

  • Response to treatment
  • Status of your cancer
  • Possibility of early recurrence

Try and relax
Don’t stress the body
Don’t stress the mind
Don’t think about not having a job, Mr. Sack, the total and complete devastation of all my hopes and dreams.
Just don’t think about it all.
Yah, right.

I am so scared. Never stop being scared. Never stop reaching out… to find… no one

Visualizing my Dragons
my Warrior Dragons
Please don’t stop burning.

Please.Don’t.Stop.

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Posted in Burzynski Clinic, Coping, Dr. A. Khan, Dr. L. Deleon, Results, scared, Stress, Tests, tired | 1 Comment »

Tuesday, October 20th, 2009

Test Results – Tumor Markers #6

My PCP‘s office faxed my lab results…

Last Friday (Oct 16 2009), I had the bloodwork drawn to track my tumor markers. It was draw #6. I’ve been having Very Good Results to-date, however this time we see some increases that make me a bit uneasy…

This blood draw was for the monthly tests (most specifically my CEA Tumor Markers)…

* April 15, my baseline CEA tumor markers were 63.1 ng/mL (nanograms per milliliter). This is High, as Norm is 0.0-3.0 ng/mL.
I honestly don’t know how high “really high” is, but – in my internet searching – I read one gal talk about the mid-200′s, so I guess my high is not That high, but It’s High To me.
* June 03, my 2nd draw CEA tumor markers were 35.9 ng/mL
* July 03, my 3rd draw CEA tumor markers were 12.8 ng/mL
* August 27, my 4th draw CEA tumor markers were 3.9 ng/mL
* September 18, my 5th draw CEA tumor markers were 3.3 ng/mL
* October 16, my 6th CEA tumor markers are 3.2 ng/mL
3.2 = a .1 DECREASE from last month – this is acceptable and getting closer to normal!

The CEA numbers are still dropping and I’m pleased with that, though they are dropping in smaller increments… I’ll feel better when I’m within the “normal” range.  I Still I wish I was confident with just how much this meant, but this (CEA: The Test) continues to answer Some of my questions…

Still hoping that this all means Something Good…  Something…

My Other Numbers as of October 16 2009 blood test results:

* CA-125: 10 U/mL (Reference @ 0-35)
a 3 point INCREASE – up from 7 U/mL from September’s draw, I’m not sure how to feel about this… I’m not happy, but don’t know whether to be worried or not as it is still well within the normal range, in fact is very low normal range.

* CA 15-3: 16 U/mL (Reference @ <32)
a 1 point DECREASE – down from from 17 U/mL from September’s draw; I’m not going to stress 1 point since one point variation is acceptable and I am well within the normal range, in fact in the low end of normal.

* CA 27.29 (see CA15-3 above): 30 U/mL (Reference @ <38)
an 11 point INCREASE – up from 19 U/mL from September’s draw.  To me, this is a Huge increase and concerns me a great deal.  I’m still within normal ranges, though I am in the high end of normal now.

The CA 27.29 test is used to monitor your:

  • Response to treatment
  • Status of your cancer
  • Possibility of early recurrence

I’m not sure how I feel about these CA 27.29 numbers… while I’m Very Glad they are still within the normal range, the increase scares the crap out of me.  What scares me so much is that “if your CA 27.29 levels rise, it may indicate that your cancer is progressing or spreading.”  Is this increase enough to be concerned about?  However, “some non life–threatening conditions may also cause CA 27.29 to show up in your blood (ovarian cysts and benign conditions of the breast, liver and kidneys)”, and I DO have Fibrocystic Breast Disease (a “benign condition of the breast”), so That is something in itself to consider… On The Other Hand, I DO have a malignant condition – cancer…

I guess I’ve been “so used” to the good results, to the numbers dropping so dramatically, that this change has really hit me, has reminded me of what I am dealing with, what I am fighting, what is on the line here… my life.

Cancer is what I am dealing with

My life is what I am fighting for

My Life is what is on the line

My Life.

Stress… yes, Lots of stress.  The stress is beating me down.

Both Dr. Deleon and Dr. Khan have advised me to wait and see what happens next month before I become overly concerned.  Dr. Deleon also mentioned that stress can cause tumor markers to rise slightly, and this whole situation IS FREAKING STRESSFUL.  PLUS, I Have cheated on my diet and had some sugar in the past 2 weeks that I should NOT have had… which could be another factor.

So… chill out.

Easy to say.

I am so scared…

Bottom line – we are Hopeful that the PET / CT scan next month will show what is going on, and hopefully will show as much progress as the previous PET / CT scan!

Breathing…. and

Visualizing my Dragons
Still visualizing their Riders,
Still visualizing my Dragons breathing fire,
Still visualizing their Riders wielding their lasers
Burning the tumor,
Burning each evil cell
Into ash.

Burning Burning Burning Each Evil Cell.

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Posted in Dr. A. Khan, Dr. L. Deleon, frustration, Results, scared, Stress, Tests, visualization | 4 Comments »

Monday, May 18th, 2009

Zometa

Today I took my first monthly infusion of Zometa, I will have 4mg/5ml each month.

ZOMETA is (also) used to treat patients with other cancers—including breast‚ lung and prostate cancer—that have spread to the bones‚ a process called bone metastasis. When cancer has spread to the bone‚ treatment with ZOMETA helps to protect bones and may reduce or delay such complications as:
* Bone fracture
* Need for radiation and/or surgery to bone
* Spinal cord compression

“ZOMETA is generally well tolerated. The most common side effects you may experience with ZOMETA therapy are fatigue, nausea, vomiting, bone pain, headache, fever, shortness of breath, anemia, constipation, or lack of appetite. These side effects with ZOMETA were usually mild and transient. Your doctor may recommend a mild pain reliever to make you more comfortable.

In postmarketing experience, severe and occasionally incapacitating bone, joint, and/or muscle pain has been reported infrequently in patients taking bisphosphonates.”

Yet another very expensive drug at $1087/month. I can, and intend to, petition the manufacturer for financial assistance.

Caesar was the tech who did my infusion, he was very nice.


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Posted in Burzynski Clinic Doctors, Dr. L. Deleon, Gene Therapy Drugs | 15 Comments »

Friday, May 15th, 2009

Xeloda

Today I started on Xeloda, the first FDA-approved oral chemotherapy for both metastatic breast and colorectal cancer.  A “convenient” and low-toxicity oral chemotherapy!  I will take 1000mg – (2) 500mg pills – each morning and evening.  Two weeks on, one week off; repeat continuously.

The most common side effects with XELODA are:

* Diarrhea, nausea, vomiting, stomatitis (mouth and throat sores), abdominal (stomach area) pain, upset stomach, constipation, loss of appetite, and dehydration (excessive loss of water from the body). These side effects are more common in patients who are 80 or more years of age
* Hand-and-Foot syndrome (pain, swelling or redness of your hands or feet that prevents normal activity), dry, itchy or discolored skin, rash, nail problems, and hair loss
* Tiredness, weakness, dizziness, headache, fever, pain (such as chest, back, joint, and muscle), difficulty sleeping, and taste problems

Even more Joys of Breast Cancer.

Another very expensive drug at $2897/month. I can, and intend to, petition the manufacturer for financial assistance.

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Posted in Burzynski Clinic Doctors, Dr. L. Deleon, Gene Therapy Drugs | 19 Comments »

Thursday, May 14th, 2009

Zolinza

Today I started on Zolinza, an oral HDAC inhibitor which prevents DNA transcription and gene expression in some tumor cells – typically Cutaneous T-cell lymphomas.  I’ll take one 100mg pill per day.

The most common side effects associated with Zolinza include:
• Stomach and intestinal problems, including diarrhea, nausea, vomiting, loss of appetite, constipation and weight loss
• Tiredness
• Dizziness
• Headache
• Changes in the way things taste and dry mouth
• Muscle aches
• Hair loss
• Chills
• Fever
• Upper respiratory infection
• Cough
• Increase in blood creatinine
• Swelling in the foot, ankle and leg
• Itching

More Joys of Cancer

Another very expensive drug at $2217/month.  I can, and intend to,  petition the manufacturer for financial assistance.

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Posted in Burzynski Clinic Doctors, Dr. L. Deleon, Gene Therapy Drugs | 4 Comments »

Wednesday, May 13th, 2009

Tarceva

Today I started on Tarceva, which is typically used to treat Advanced Non-Small Cell Lung Cancer and Advanced Pancreatic Cancer.  I’ll take one 150mg pill per day.

“Tarceva is a targeted cancer treatment. Tarceva is designed to block cell tumor cell growth by targeting the protein in your body called the Human Epidermal Growth Factor Receptor 1 (HER1/ EGFR)“

The Human Epidermal Growth Factor Receptor 1 (HER1/ EGFR) is closely associated with my particular type of breast cancer.

The most common side effects associated with Tarceva  are fatigue, rash, nausea, loss of appetite, and diarrhea.

Another very expensive drug at $4200/month.  I can, and intend to,  petition the manufacturer for financial assistance.

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Posted in Burzynski Clinic Doctors, Dr. L. Deleon, Gene Therapy Drugs | 10 Comments »

Tuesday, May 12th, 2009

Sodium Phenylbutrate (aka PB)

Today I started on the Sodium Phenylbutyrate (SOE-deem-um fen-il-BYOO-ti-rate) aka “PB”.  It is typically used to help treat a deficiency of enzymes that help remove ammonia from your body. It has also shown to increase the expression of genes, block how the motor nerve cells in ALS die, and may prove to be an effective therapy for ALS. Sodium phenylbutyrate is considered medically necessary for the treatment of acute promyelocytic leukemia and malignant glioma.

The following is according to the National Cancer Institute:
“oral sodium phenylbutyrate 
An orally active derivative of the short-chain fatty acid butyrate with potential antineoplastic activity. 4-Phenylbutyrate inhibits histone deacetylase, resulting in cell cycle gene expression modulation, reduced cell proliferation, increased cell differentiation, and apoptosis. This agent also initiates fragmentation of genomic DNA, resulting in decreased DNA synthesis and the inhibition of tumor cell migration and invasion. “

“However, there is no adequate evidence in the peer-reviewed published medical literature demonstrating that the use of sodium phenylbutyrate improves the clinical outcomes of patients with cancers of the prostate, breast, or cancers other than acute promyelocytic leukemia and malignant glioma.  Current evidence is limited to in vitro and in vivo studies and Phase I studies.  Prospective Phase III clinical outcome studies are necessary to determine the clinical effectiveness of sodium phenylbutyrate for cancer.”
Aetna
Clinical Policy Bulletin:
Antineoplaston Therapy and Sodium Phenylbutyrate

At The Clinic, PB is given to cover 96 of the minor genes that can’t be checked / addressed with conventional treatment.

I start with 1 tablet 4 times a day.  Each day I add an additional tablet until I am up to 6 tablets 4 times a times (for a daily total of 24 tablets).  This is done to make sure I can tolerate the drug and the increases in dosage.

It’s an expensive drug – $4500/month from The Clinic.  This includes “case management” – which means I get to communicate with my Dr whenever I need to.  Kinda what I thought a Dr was for, but guess it’s now called “case management”.  There is no petition for financial assistance.

They sure don’t make it financially easy to stay alive…  Maybe if it was more feasible, more people could afford it, and the cost would come down… maybe…??  I guess the bullet had to be bitten somewhere, and I guess it’s been determined that it is the patients who need to do the biting.  Seems we get it coming and going…

Side effects I might expect are:

More common

Change in frequency of breathing; lack of or irregular menstruation; mood or mental changes; muscle pain or twitching; nausea or vomiting; nervousness or restlessness; lower back, side, or stomach pain; swelling of feet or lower legs; unpleasant taste; unusual tiredness or weakness

Less common

Chills; fever; joint pain; sore throat; unusual bleeding or bruising

Rare

Convulsions (seizures); dizziness; dryness of mouth; fast, slow, or irregular heartbeat; increased blood pressure; increased thirst; irritability; muscle cramps; rectal bleeding; swelling of face; unusual weight gain; weak pulse

Other side effects may occur that usually do not need medical attention. These side effects may go away during treatment as your body adjusts to the medicine. However, check with your doctor if any of the following side effects continue or are bothersome:

Less common

Changes in taste; decreased appetite; strong body odor

Rare

Abdominal or stomach pain; constipation; fainting; headache; mental depression; skin rash

Oh Joy.

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Posted in Burzynski Clinic Doctors, Dr. L. Deleon, Gene Therapy Drugs | 8 Comments »

Wednesday, April 15th, 2009

Burzynski Clinic – Appointment

April 15.  Tax Day.  Day of Reckoning…

Mom and I went for the appointment at Burzynski Clinic.  What an experience.

First and Foremost – the feeling of Hope there is overwhelming.  There is no smell of chemo, no sense of doom.

We met with Dr. Lordes Deleon, who would be my primary physician; Dr. Fu, an oncologist who came to The Clinic from MD Anderson; and Dr. Burzynski, himself.

It was a long time, took most of the day.  And turned out to be very emotional.  Eye-opening.

We had to go through financial planning, to be sure that I could afford the treatments.  I don’t know how I will, but if I decide that this is the path for me to follow, I will have to find a way.

The final meeting with the Drs was the most relevant.

As we’re sitting there talking, Dr Burzynski keeps mentioning “the spread of the disease”.

what…?

“the spread of the disease within your body…”

what…?

So I am sitting there looking like a fool as the Drs inform me that there is a high possibility that the cancer has spread to my bones – specifically my spine – and to my chest cavity.

what…?

Dr Burzynski looks at me and says “surely you knew, surely your Dr told you of this?”

what…?

So, as Mom and I are sitting there, we all go over the results of the initial PET scan, the one that Dr Keller had read to us.

* At least 6 lymph nodes affected, with a stew of 7-10.

* Multiple left axillary adenopathy with difuse scattered activity within multiple nodes.

* Abnormal tracer accumulation in the mediastinum predominate pretracheal and subcarinal regions suggestive of subtle metatastic adenopathy disease in this region.

* Minimal scattered activity within what appears to be either the EG junciton or the thoracic psine as previously noted consideration to bone scan may be of further benefit to evaluate for an subtle osseous metastasis.

* Minimal scattered activity in the region of the EG junction which is difficult to evaluate if this is esophagus versus osseous abnormality and correlation with bone scan is suggested.

The Burzynski Clinic Drs are amazed that we don’t know this information, that Dr Keller didn’t go over all this with us.

Bottom line:
* The lymph node activity is much more than “2″ that Keller had told us.
* There is suggestion that the cancer may have spread to my bones and perhaps to my chest cavity.
* Several times in the report, the Radiologist suggest a bone scan – nothing was said by Keller.

Further tests are Definitely needed.

Keller simply neglected to mention this information to us…

Lovely.

Needless to say, I’m in a Total State of Shock…

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Posted in anger, Burzynski Clinic, Burzynski Clinic Doctors, despair, Dr. L. Deleon, Dr. S. Burzynski, Dr. S. Fu, Gene Therapy Regime, hope, Mom, sadness, scared | No Comments »







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