Dr. Stanislaw R. Burzynski

Hi Jaboroboson, in fact some of us here have watched the film and researched Dr. Burzynski.  I know he has supporters for whatever reason, but at least in my personal research, I have yet to find even one single credible expert who endorses him or his work.  I may rely on customer testimonials for the best pizza sauce or the best hand lotion, but when it comes to something as serious as the treatment of cancer, I look to data and facts. 

There's a very good reason Burzynski's treatments aren't FDA approved for general use; the same reason they aren't covered by insurance.  They're unscientific and unproven.

I've been reading this and another thread about Dr. Burzynski and wanted to make a comment. Like many here (but not all) I had a garden-variety, very treatable BC and am planning to find something else to die from (in about 40 years). I've known women who opted for non-traditional BC treatments but that's not my style. I've never even tried chiropractic or acupuncture.

However, I have a friend with glioblastoma, a brain cancer for which the average survival after diagnosis is 14 months. From what I understand, a fair number of glioblastoma patients find their way to Dr. Burzynski.

Glioblastoma is 100% fatal, so the question for someone diagnosed with it is not "if" but "when." If I had Glioblastoma or a similar cancer I'd probably try Burzynski, or leeches, or a witch doctor, or anything. 

My point is that I think it's one thing to embrace a non-traditional approach when one has something readily treatable by traditional medicine, and quite another thing to go to Burzynski or another non-traditional practicioner when traditional medicine provides no hope for your condition.

PS This is an exact quote from his clinic for her (word for word), it will give you an idea of the pricing: hugs Terri in MI

"There is no definite set cost for your treatment due to the
variation of medications involved; however, below is a range of the estimated costs involved.

There is no guarantee that your insurance company will pay the claim. Since we are
classified as "out of network" we are unable to accept Medicare, Medicaid and any HMO insurance,and require each patient to pay deposits for all services rendered.

Patient must be able to pay:Financial Requirements:

a. $500.00 ----- Medical Records Review fee, paid prior to appointment date

b. $1,000.00 --- Consultation fee

c. $4,000.00 --- Laboratory deposit

d. $10,000.00-- Medical Services deposit

e. $5,000.00 - $15,000.00--Medication costs (in some cases cost may exceed
this range)

f. $4,500.00 --Monthly Case Management Fee

The Physicians of the Burzynski Clinic will order specific Genetic Tumor
Markers Tests. Once they receive these test results, they will determine a personalized therapy
which will best treat your cancer. Treatment plans may include several medications. Sometimes the costs for the medications can be high, because the FDA has just recently approved some of
these medications.

When you are discharged to go home, the monthly case management fee is
$4,500.00, plus medications. The average treatment time for most patients generally ranges
from 4 to 12 months."

Last night I was listening to an interesting episode of "This American Life." If you'd like, you can hear it here: http://www.thisamericanlife.org/radio-archives/episode/450/so-crazy-it-just-might-work

It's about a guy who has discovered something that could cure cancer, but it's probably not going to become an approved treatment because he's sort of unwilling to be involved in the kind of rigorous scientific validation that it would take to get the treatment recognized and accepted. 

Stage IV BC + Scientific and proven "standard of care" treatments = certain death after much suffering.

Let's all hope the cure is well on the way as there isn't much hope otherwise.  I don't care who the cure comes from. All attempts should be registered and recorded in a central place where we can make a proper assessment of the treatment.  No government, organisation or group should have exclusive rights to treat people as long as they aren't harming us more than the standard of care would.  Most treatments can't be worse than the above inevitable formula which for some bizzare reason is regarded as the correct and recommended course of action.  

Bless all of us for having to bear this ongoing fear, and for the researchers, experimenters, well meaning health workers, carers and fundraisers etc who try to help us. Take care friends. We're all in this together so let's all hope for a cure.

Apple or Scuttlers,

Would either one of you be so kind  to address the misconceptions of Joy's opinion which she states as fact:

JoyLiesWithin wrote:

Stage IV BC + Scientific and proven "standard of care" treatments = certain death after much suffering.

Well if this helps any, my husband, who was dx with BC (Bladder Cancer) in 2009, is now Stage IV.  He suffered (pain, fever, bleeding) before starting chemo but after only one cycle  of treatment was able to stop all pain medication. There is a reason Stage IV chemotherapy is sometimes titled "Palliative". PM me if you want to discuss this more. It's been a looong year.

I speak her not just a as a patient but as a family member/caregiver. Me, my mom, and sister and hubby have all had cancer twice each in the past 10 years. I just saw my oncologist and was talking to her about my sister who is stage 4 and refusing treatment. I think she is still doing the tamoxifien which is making her exhausted and causing body aches (side effects etc) BUT at last scan was not shrinking tumors. You see my sister is of the mind set, "its in my liver, I don't want my children to see me whither away and suffer, so I will just do the best I can for the time I have left"...BUT she did go see this Dr B in TX...and then refused his treatment because he was talking about drugs not prescribed for premenopausal women, plus the cost was astronomical AND he was just going to do chemo --- just like her regular oncologist. 

My sister refuses chemo, which I do not understand cause Tamoxifen IS chemo too, but just in pill form. Now she refuses all scans, and was coughing alot, so we suspect it has gone to her lungs (her stage 4 was dx'd in her liver last April). My oncologist was so upset when she heard that my sister is actively dying.  She said she has many stage 4's who go on and off chemo and are healthy and still working and are active and positive mindsets and are OK...not knocking on deaths door like my sister thinks happens when you do chemo.  

Speaking as a family member who is a cancer survivor, and not intending to upset anyone here who is sick...Frankly I am pissed off, ok now I will rant for a minute, that chemo has gotten such a bad-rap.

I AM ALIVE!!!!!!!! I have had chemo twice (total about 14 months)...Tamoxifen (if you ask me) SUCKS, but yet my sister thinks that chemo is worse, and (for me) it was not. Chemo was tolerable, I worked thru it all, and many do also. Tamoxifen (for me) was debilitating (I was in bed for years!!!!) and yet THIS (which is NOT working) is her only chosen treatment, and she is dying, (IMHO-needlessly). We have all tried begging her, and encouraging her, but yet she wouldn't even give it a shot to see if it would work...and her daughters are so young.

Now, I KNOW IT IS HER CHOICE, but what I am saying is NOBODY knows what is going to work on YOU, but to not try...???  It is just very very sad, for us, her family, to see her so sick and just letting herself go...

I am the oldest, a fighter, she was the youngest and was always treated with gentleness, we have two very different personalities, for sure. When I was sick, I was very very sick, and had I not had young children I would have probably considered stopping treatment, so I get it... BUT she never even gave it a shot.

PS My oncologist was so upset that my sister would entertain Dr B (who by the way ripped my sister off for about 5 grand---NOT he does not take stage 4's, but yet he let her waste her time and money on a consult).  and all he offered her was chemo -and according to my oncologist, those are "old" chemo's that are no longer being used, that have been improved on and changed.

The side effects of chemo are ERXTREMELY manageable these days, its is not all "pain and suffering" and then you die. Its easy to conceive that that is what it is, but hat is not necessarily the case.  I am angry; my sister is only 42...hugs terri

I know, but its so hard. cancer sucks!

My integrative oncologist is $400 for a 30 min. consult. The integrative Oncologist at UCLA was $350 for a 50 min consult, and that was three years ago; it was comprehensive, also helpful, but most of what I got to take home and read was a print out from a separate internet site.  None of them are covered by insurance.  If Dr B's fee is $600 for several hours of records review and an office visit, comparatively, it is not out of reason. 

Chemo with a trad onc costs about the same as his clinic fees, but of course, it is borne by the insurance group.  We all in a way end up paying for it. 

I was never a proponent of Dr B's until I saw the film.  It was compelling.  But I think his therapy is limited in scope.  I think it is probably only therapeudic for specific types of tumors.  Hopefully that will be fleshed out one day.

Dx 3/09 Triple negative, stg1,SNB0/2, BRCA neg, 1.4cm, 7mm DCIS, ki67 70-90%, lumpectomy w/re-excision, no chemo/no rads due to delays from secondary health issues; SonoCine every 6 months

Actually, if you click on the health central link, it takes you to a description of Tamoxifen, where it is classified as a hormone therapy, not a chemotherapy.  It's definitely weird that it says that on the bottle, though.  

Tamox could definitely shrink her tumors - it works by blocking the estrogen receptors on the cancer cells, which starves them to death.  I hope that is exactly what it is doing for your sister! 

chemotherapy:
1. The treatment of disease, especially cancer, using drugs that are destructive to malignant cells and tissues.
2. The treatment of disease using chemical agents or drugs that are selectively toxic to the causative agent of the disease, such as a microorganism.

If broccoli extract could be shown to be destructive to malignant cells, then it too would be technically chemotherapy.  The term is generally understood to mean those very powerful and often toxic drugs that are usually delivered by IV to fight cancer.  However, chemotherapy doesn't have to be toxic nor delivered by IV.

We need to decide on each treatment according to what we know about it's effects whether good or bad, and the likely effects of not using the treatment.  Will it possibly lengthen our life, or improve our quality of life?  Without a crystal ball we have no idea whether we will benefit or suffer the effects of each treatment including alternatives.

I could say, I won't take Tamoxifen in case it makes me deaf or gives me Uterine cancer, but the odds of those are extremely low, whereas the odds of Tamoxifen stopping or delaying progression is quite high for me because my Stage III risk is high.  Someone with Stage I might not feel the benefit is worth it. 

Tamoxifen doesn't destory cancer cells. It blocks them from entering other cells.

So, to me, it's not a chemotherapy. But it IS a systemic hormonal therapy for cancer treatment.

I think we can find definitions that state that Tamox and the AI's are chemo and others that say they're not. Certainly, the hormonals work very differently than the traditional IV chemo drugs. I am on Arimidex and don't describe it as chemo but if someone does think it's chemo, fine. Does it matter? Caryn

It doesn't matter.  I don't think of it as chemo myself, was just trying to clarify.