Tag Archives: cancer

2014 Undy 5000: Please Support the Poo Choo Train

2 Apr

The 2014 Undy 5000 in support of the Colon Cancer Alliance is being held in Buffalo’s Delaware Park on April 26th. It is – astonishingly enough – the only Undy 5000 being held in New York State, and people are coming from throughout the region to participate in a fun event designed to raise money for – and awareness of – a particularly deadly but especially preventable cancer that has an unfortunate stigma.

For those of you squeamish about getting a perfectly painless colonoscopy, you now have a new FDA-approved, non-invasive screening method. To that end, this is a bleg for support as my wife and kid will be participating in the Undy run, and we’re hoping that you’ll help us to raise $4,000 (or more) for the CCA and its mission to help victims of colon cancer, provide free screenings, and raise awareness.  

I seldom write about my personal life, and when I do I keep it as vague and general as possible. You’ll forgive me for making an exception today, but it has to do not with me, but with all of you. 

Back in October 2012, my wife’s gynecologist Dr. Judith Ortman-Nabi advised her to undergo a colonoscopy due to a significant family history of colon cancer. Usually, people aren’t prescribed colonoscopies until the age of 50, which we haven’t yet reached. She went to the endoscopy center on Maple near Millersport. It wasn’t an uncomfortable procedure, but the sedation knocks you out for a day. Bad news – they found a polyp; devastating news – it was cancerous.

That commenced a particularly scary and difficult time. We had to find an oncologist. We had to find a surgeon. My wife returned to the endoscopy clinic, where they tattooed the area so a future surgeon would know from where the polyp had been removed. The area “looked clean” but we didn’t want to take the chance that it hadn’t all been caught. We were exceedingly lucky to discover Dr. Timothy Adams, a talented, young, and friendly surgeon who performs laparoscopically-assisted colon resection surgeries. 

In November 2012, my wife underwent a successful resection surgery and we were overjoyed to find out that the section removed contained no cancer, and the bundle of lymph nodes that were removed along with it showed that the cancer had not spread. We had found it early – had we waited another year or until we were 50, the result likely would  have been tragically different.  That diagnosis leads to a lifetime of follow-ups; bloodwork, testing for markers which may indicate a recurrence of cancer. 

Catching this early was the difference between a full and curative recovery, and something far worse. 

So, my wife wants to help make sure others have as fortunate a result as she, and she is raising money for colon cancer research via this page, and if I’ve ever made you think, laugh, or angry via this blog, I humbly ask you to donate whatever you can – however smallYour donation is 100% tax deductible. If you don’t or can’t, I understand, but I urge you to take colon cancer seriously. If caught early, it could be the difference between life and death. Here’s where the money that’s raised will go – to advocate, to promote and to expand access to screening, to educate, and for cancer research. Because the Undy is intended to be a humorous way to deal with a sensitive subject, our team is called the “Poo Choo Train” in honor of Mr. Hankey and Eric Cartman. 

Every day is a gift. Thanks for reading and for considering this. 

Tonight: Colon Cancer Alliance Blue Bash

21 Mar

Tonight from 6 – 8:30pm, please join the Colon Cancer Alliance at to kick off the 2nd Annual Buffalo Undy 5,000 at Artisan Kitchen & Baths at 200 Amherst Street.

Attendees can sign up for the race, set to take place in Delaware Park on April 27th, learn more about the Colon Cancer Alliance’s efforts to increase awareness of this disease, win prizes, and check out the Boxer Beauty Contest. 

As many of you know from this post last week, my wife is a colon cancer survivor, and we are so grateful for all your support in helping to combat this deadly but preventable disease. 

 

Nora Šitum: Coming to America

6 Feb

A five year-old Croatian girl, Nora Šitum, is suffering from acute lymphoblastic leukemia and needs immediate treatment. Although the economic situation in Croatia is in crisis – the country’s debt was just lowered to junk status last week – within just a few days, the family had raised the $590,000 for Nora’s treatment at the Children’s Hospital of Philadelphia. She is front-page news in Croatia, and the story is proving to be something of a PR headache for a Philadelphia hospital and the American Embassy in Zagreb. Her story made the front page of social media site Reddit Wednesday morning (but was later removed due to an editorialized title). 

After all that money had been raised so quickly, Croatian media reported yesterday that the Hospital had informed Nora’s family that the charge would actually be just over $834,000. That’s aside from the fact that her family and caregivers have been working feverishly to work through the complicated Croatian and American bureaucracies involved with transporting a little girl from a non-visa-waiver country to the US for medical treatment. The process to obtain such a visa is more difficult than just getting a tourist visa – you also need to establish that travel to the US is necessary because the proposed treatment is unavailable in Croatia, and the applicant must be seen by an Embassy physician. You also need to prove that you have an appointment and the financial means to pay the bill. 

Obviously, the United States Embassy in Croatia and the Children’s Hospital of Philadelphia are unable to comment about specific ongoing cases, but I did manage to speak with people close to the situation who agreed to discuss the case on condition of anonymity. 

Under the Croatian national health care scheme, people are able to apply for payment of medical treatment undertaken abroad, and 75% of such requests are approved on an average year. However, the stem cell treatment that Nora is scheduled to undergo in Philadelphia is classified as “experimental”, and as such, the government health care plan will not cover any of it – the family has to come up with cash. 

The Šitum family has been in close touch with the US Embassy’s consular staff, and visas for Nora and her family were expected to be issued Wednesday afternoon. The Embassy has been in close touch with both the hospital and the Croatian Ministry of Health to coordinate the issuance of visas and doing “whatever it takes” to ensure that Nora and her family can travel to the US for these treatments. 

While it is true that the hospital quoted $590,000 as the cost of the experimental leukemia treatment that Nora is expected receive in Philadelphia,  it is also true that an additional $270,000 is to be paid over the course of a two year follow-up treatment. The Croatian government indicated that it would waive collection of the value added tax on any monies donated for Nora’s treatment, and the Mayor of Zagreb promised that the city would pay the difference into the accounts collecting funds for Nora’s treatment.  At a press conference Wednesday, Nora’s mother announced that they had collected in excess of the entire amount the hospital in Philadelphia had quoted to them

The treatment Nora is expected to receive is truly revolutionary – it involves injecting a harmless mutation of HIV into the child’s system, tricking her immune system into fighting the cancer.

To perform the treatment, doctors remove millions of the patient’s T-cells — a type of white blood cell — and insert new genes that enable the T-cells to kill cancer cells. The technique employs a disabled form of H.I.V. because it is very good at carrying genetic material into T-cells. The new genes program the T-cells to attack B-cells, a normal part of the immune system that turn malignant in leukemia.

The altered T-cells — called chimeric antigen receptor cells — are then dripped back into the patient’s veins, and if all goes well they multiply and start destroying the cancer.

The T-cells home in on a protein called CD-19 that is found on the surface of most B-cells, whether they are healthy or malignant.

Nora’s father wrote a message thanking supporters and people who had so quickly donated money for Nora’s treatment, adding,  

Thank God we live in Croatia – a country with a “junk” credit rating – and sent a message around the world.Maybe we are small and poor, and perhaps we don’t have the same living standards as the West, but for our children, we will empty our pockets of every last penny, because we have a heart and soul bigger than Switzerland’s credit rating. 

UPDATE: The Children’s Hospital of Philadelphia issued the following statement: 

CHOP treats thousands of children each year, from throughout the region, the country and the world and cares about the health of all children. We know how invested the family, friends, and the community at large is in ensuring CHOP provides the best possible care for all of its patients.

While patient privacy prohibits us from commenting specifically on any individual’s medical condition without consent, we want the public to understand the pricing protocols we follow for all international families.

How the International Medicine Process Works:

·       CHOP’s process estimates the costs of treatment in advance and seeks payment at the time treatment begins.  Additional follow-up clinical treatments are sometimes necessary and can be administered over several years, either at CHOP or back in the patient’s home country.  CHOP does not charge for this follow-up clinical treatment at the time of initial treatment.  If the child is not further treated at CHOP, CHOP will never charge for the follow-up treatment.  However, CHOP does explain those potential costs to patient families at the outset so they understand the financial issues they may be facing.  

·       We try to ensure that all international families understand the difference between the initial costs of treatment charged by CHOP, which does not change, and the potential future costs which will depend on future clinical treatments.

Foreign contributions can be made on Nora’s behalf using the following information: Udruga Hrabro dijete (Brave Child Association)  OIB 58243364080 and through the Zagrebačka Banka at IBAN: HR0423600001102209843 SWIFT CODE: ZABAHR2X

 

$1.6 Million Missing From Possible Cancer Cure

5 Sep

This article from the Telegraph is somewhat heartbreaking. Sitting in a freezer in the middle of Sweden is a virus that has been proven to target and kill cancer cells – and cancer cells only. The only side-effects are mild flu-like symptoms

It is a fact of human biology that healthy cells are programmed to die when they become infected by a virus, because this prevents the virus spreading to other parts of the body. But a cancerous cell is immortal; through its mutations it has somehow managed to turn off the bits of its genetic programme that enforce cell suicide. This means that, if a suitable virus infects a cancer cell, it could continue to replicate inside it uncontrollably, and causes the cell to ‘lyse’ – or, in non-technical language, tear apart. The progeny viruses then spread to cancer cells nearby and repeat the process. A virus becomes, in effect, a cancer of cancer. In Prof Essand’s laboratory studies his virus surges through the bloodstreams of test animals, rupturing cancerous cells with Viking rapacity.

Unfortunately, the man behind this discovery needs – and doesn’t have – about $1.6 million to handle the health and safety regulatory paperwork needed to start human clinical trials. 

Swedishly uninterested in profiteering, devoted only to the purity of science, Magnus and his co-workers on this virus have already published the details of their experiments in leading journals around the world, which means that the modified virus as it stands can no longer be patented. And without a patent to make the virus commercial, no one will invest. Even if I could raise the £2 million (I want only the best version) to get the therapy to the end of phase II trials, no organisation is going to step forward to run the phase III trial that is necessary to make the therapy public.

‘Is that because pharmaceuticals companies are run by ruthless plutocrats who tuck into roast baby with cranberry sauce for lunch and laugh at the sick?’ I ask sneerily.

‘It is because,’ Kjell corrects me, ‘only if there’s a big profit can such companies ensure that everyone involved earns enough to pay their mortgage.’

If you donate $1.6 million, you can have the potentially historic cancer-killing virus named after you. If you want to donate against that sum, donations are being accepted at The Oncolytic Virus Fund, Box 256, SE-751 05 Uppsala, Sweden. 

Finally, given the tenor and content of the health insurance debate in this country, this should not go unnoticed: 

…Uppsala University Hospital, a European Centre of Excellence in Neuroendocrine Tumours. Patients fly in from all over the world to be seen here, especially from America, where treatment for certain types of cancer lags five years behind Europe.

Sweden has a redistributive socialist universal health care system – among the best in the world.  It is a point of pride for the country that equal access to health care ensures a healthy population. The United States can’t even agree on that goal yet, much less the means with which to attain it. 

Erie County Health Commissioner on Breast & Prostate Cancer

3 Jul

Erie County Health Commissioner Dr. Gale Burstein saw what the previous County Executive had to say about how people no longer die from breast and prostate cancer and “some of the other things”, and today issued the following press release: 

BURSTEIN CALLS ATTENTION TO CANCER RATES IN ERIE COUNTY

Prostate, Breast Cancer Mortality Rates Indicate that Residents Still Suffer

ERIE COUNTY, NY— Erie County Health Commissioner Dr. Gale Burstein today issued a statement regarding the incidence and mortality rates of prostate and breast cancer in Erie County, underlining their serious nature and the fact that people still suffer from these diseases. Former-Erie County Executive Chris Collins recently stated in an interview, “People now don’t die from prostate cancer, breast cancer and some of the other things.”[1]

“All types of cancer, including prostate and breast cancer, have significant mortality rates associated with them.  During 2005-2009, Erie County saw an annual average of 826 cases of female breast cancer, with an average of 176 deaths per year. For prostate cancer in the same period, the annual average was 930 cases, with an average of 103 deaths per year.”

“These numbers represent the sad reality that, despite advances in cancer treatments, people still die from these types of cancers.  It is imperative that people not only be aware of the potential risks from all types of cancers but get appropriately screened and checked as recommended by your doctor for breast and prostate cancer.”

For more information on Erie County cancer statistics, visit: http://www.health.ny.gov/statistics/cancer/registry/vol1/v1cerie.htm

For more information on the Erie County Health Department, visit:  http://www2.erie.gov/health/

(Image courtesy Tom Dolina)

Tyler's Toy

22 Nov

Via Fark, this story of Tyler Shipman, a dying high school senior from Minnesota whose last wish is that his beloved 1986 Pontiac Fiero be restored.  The wish was made on a Fiero enthusiast’s forum, and the response was as overwhelming as the badass yellow restoration that resulted.

The car was finished today, and Tyler even got to drive it for a while.  You can see pictures of the restoration, and the final result, here.

There is a PayPal donation button here.