Jessica DeCristofaro The Lymphoma Barbie!

Jessica DeCristofaro The Lymphoma Barbie!

Life’s Roller Coaster

Posted by:
Greg Lance – Watkins
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‘My cough was actually CANCER’: Saleswoman says six different doctors misdiagnosed her disease as allergies, acid reflux and a pulled muscle

  • Jessica DeCristofaro, 28, suffered from a constant cough for three years 
  • Says doctors misdiagnosed it but it turned out to be stage 4 cancer 
  • Chemotherapy was successful but the disease returned a month later 
  • Advises people to trust their instincts if they believe something is wrong 
Jessica DeCristofaro, 28, had a constant cough but it was dismissed by six different doctors. In January, tests revealed she had a rare type of cancer

A saleswoman whose cough was dismissed by six different doctors discovered cancer was spreading around her body. 

For three years medics told Jessica DeCristofaro, 28, her persistent coughing was allergies – and she was prescribed drugs and told to change her diet

She began suffering severe abdominal pain she was referred to an ear, nose and throat (ENT) specialist as doctors suspected it was acid reflux or a stomach ulcer.

There, she was told she had simply pulled a muscle and advised to rest.

But in January this year the pain became so bad she decided to go to the emergency room, where scans and blood tests revealed the devastating news – she had cancer.

Doctors said she had stage 4 Hodgkin lymphoma – which meant the disease had already spread around her body.

Ms DeCristofaro, from Miami, said: ‘For three years I had this constant cough, it was so frustrating but the doctors just blew it off.

‘I think they thought I was young and healthy but I had a feeling something was wrong, I felt so sick for so long.

‘I wasn’t shocked when they told me it was cancer. I had known something was wrong.’

Ms DeCrisotfaro developed a cough when she was around 25 – but her doctors said it was due to allergies and prescribed drugs. 

When her allergy medicine made no difference, she was diagnosed with acid reflux and was told to change her diet which helped for a while, until the cough returned.

She began to suffer abdominal pain which got worse and worse, and also developed a lump on her armpit.

She claims she went to see a doctor about the lump, who was told it was a cyst.

Then, the stomach pain became so unbearable, she went to the emergency room for painkillers.

Ms DeCristofaro said: ‘I was supposed to travel for work so I thought I would go to the emergency room and get some pain relievers, but I ended up staying overnight and having all these tests.’

Ms DeCristofaro was diagnosed with stage four Hodkin lymphoma

She began chemotherapy immediately, which caused her hair to fall out

Ms DeCristofaro was diagnosed with stage four Hodkin lymphoma. She began chemotherapy immediately, which caused her hair to fall out

Ms DeCristofaro began chemotherapy immediately, and was declared in remission in March, only for the disease to return to her chest a month later

She was then transferred to a specialist hospital for more tests  – which is when she suspected doctors might have found something more serious.

‘My mum is a nurse and saw the biopsy of my lymph node, so she knew that I had Lymphoma,’ she said. 

On February 3 medics broke the devastating news – she had Hodgkin lymphoma – a rare cancer that develops in the lymphatic system, a network of vessels and glands spread throughout the body.

Moreover, the cancer had already spread, making it more difficult to treat. 

‘My oncology doctor was livid,’ Ms DeCristofaro said. ‘He was almost yelling. He couldn’t believe it was missed for so long.

After discovering the cancer was back, she underwent 20 sessions of radiotherapy and six rounds of chemotherapy

She continued: ‘If you think something is wrong with your body, something probably is.

‘If I could do it all over again, I would have gone to the emergency room sooner, at a different hospital, so that the doctors could have run the proper tests. 

‘Always be your own advocate, it’s the only way.’

Shortly after being diagnosed, she started chemotherapy immediately and was delighted when, in March, she was told she was in remission.

However, by April 22, the cancer had returned and had spread to her chest.

She now advises people to trust their instincts if they believe something is wrong with them. She said: 'If you think something is wrong with your body, something probably is.'

 

She now advises people to trust their instincts if they believe something is wrong with them: ‘If you think something is wrong with your body, something probably is. Always be your own advocate, it’s the only way.’

She then underwent 20 sessions of radiotherapy and six rounds of chemotherapy – with her last cycle due to end in August.

Shocked by the lack of information for cancer patients, Ms DeCrisotfaro decided to write a blog about her experience, called Lymphoma Barbie.

It described the gruelling experience of chemotherapy, which caused her hair to fall out and left her nauseous.

As her treatment is almost over, Ms DeCrisotfaro is optimistic about the future and claims she can feel that her body is free of cancer

She said: ‘It was so difficult as nobody really told me what was going to happen.

‘I was so sick I didn’t know what to do. My hair was falling out in clumps, it made me sick to my stomach – it’s traumatic.

‘That drove me over the edge. Emotionally I couldn’t do it.

‘I had to find all these books to tell me what was going to happen.’

Ms DeCrisotfaro made friends with her nurses who gave her tips and trick to make the process easier, such as dealing with the nausea.

And now she is relaying this information in her book, Talk Cancer to Me, to help other sufferers.

She said: ‘I had to take leave of absence from work because the chemotherapy means I can’t be around people in case they make me ill as my white blood count is low.

‘That’s been tough for me, because I was so career driven and at the top of my career.

‘I created the blog and Instagram to get through the process.

‘I named my blog Lymphoma Barbie, because all of the nurses at my cancer centre call me a Barbie doll, since I refused to let cancer get the best of me, and still put my make-up and wig on every day.

‘I’ve met so many people going through the same thing and have so many people writing to me every day. It saved me.’

Now that her treatment is almost over, Ms DeCrisotfaro is optimistic about the future. 

She said: ‘I have a feeling it’s all gone. You learn to know about your body.

‘I’m not the same person I was six months ago. I care about different things and my attitude has completely changed. I embrace life more.

‘After this is over I want to continue writing and help educate people.

‘I feel like everything happens for a reason.’

To view the original article  CLICK HERE

For more about Jess CLICK HERE

Regards,
Greg_L-W.

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Posted by: Greg Lance-Watkins
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Is Big Pharma Peddling Hope or Providing Cures with Chemo?

Is Big Pharma Peddling Hope or Providing Cures with Chemo?
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Big Pharma, my cancer patient and me

My patient was refused compassionate access to a cheap chemotherapy. Why? Because pharmaceutical companies are often guilty of selling an ethically murky kind of hope

Picture of Ranjana Srivastava
Ranjana Srivastava
theguardian.com, Friday 2 May 2014 00.43 BST
HARROGATE, 23rd August 2012 – Cancer patients receiving treatment on a ward at
Harrogate District Hospital, North Yorkshire. Chemotherapy bags.
HARROGATE, 23rd August 2012 - Cancer patients receiving treatment on a ward at Harrogate District Hospital, North Yorkshire. Chemotherapy bags.
‘We both knew that the gesture will be more therapeutic than the drug itself’. Photograph: Christopher Thomond
After failing two types of chemotherapy for advanced cancer, my patient knew that her lease on life was short, but a cherished family event stood in the way. “My son is going to propose at the Christmas table, I just want to make it there.” Her son has been her anchor throughout her challenge; I could see why his engagement mattered so much. But Christmas was still some months away, and I feared the feat will be difficult.

“I am not afraid to die but I just want to know that I gave it my all.” This is an all too frequent exchange, unfailingly poignant, often heart-wrenching. An entirely reasonable answer would be to gently reiterate the lack of meaningful chemotherapy, broach the benefit of good palliative care, and allow for regret at both our ends. Contrary to popular belief that mythologizes every patient raging against cancer to the very end, for many this discussion eases the burden of expectation and allows for a peaceful end.

But this relatively young mother was simply not ready yet. “I would happily die right after he proposed” she smiled, reminding me that her goalposts had never changed. When a patient like that looks you in the eye, it isn’t easy to separate foreboding statistics and human longing into two neat piles and deny hope.

My head said that another chemotherapy drug wouldn’t make a significant survival difference. But my heart urged me to try, if not to boost survival, then merely to reassure her that she gave it her best shot. Put simply, we both knew that the gesture will be more therapeutic than the drug itself, hardly a rare observation in medicine.

I wrote to a large pharmaceutical company for compassionate access to a common chemotherapy that’s not government subsidised for her precise type of cancer (most likely because patients typically don’t live long enough to need it). It is a relatively old and cheap drug, importantly with manageable toxicity, and I requested a month’s supply to gauge response. I added that the patient does not expect recurrent funding in case she responds to the drug, addressing a legitimate concern. In a world where we frequently push the boundaries or prescribe chemotherapy in more questionable circumstances, I feel comfortable that what I am really doing is asking the company to be my partner in nurturing hope. Which is after all what every pharmaceutical representative has told me for as long as I have known.

So I simply don’t believe it when my request is declined. Thinking this to be a mistake, I protest further up the chain, pointing out to a senior executive that only recently the company had offered me conference sponsorship worth thousands more than the small cost of the chemotherapy. The apologies come fast, but the explanations are notably absent.

A scientist prepares protein samples for analysis in a lab at the Institute of Cancer Research in Sutton in this July 15, 2013 file photo. Instead of testing one drug at a time, a novel lung cancer study announced on April 17, 2014 will allow British researchers to test up to 14 drugs from AstraZeneca and Pfizer at the same time within one trial. The National Lung Matrix trial, which is expected to open in July or August at centres across Britain, is part of a growing trend in cancer research to remodel the way new drugs are tested to keep up with the age of genomic medicine – fine-tuning treatments to the genetic profile of patients. REUTERS/Stefan Wermuth/Files (BRITAIN – Tags: HEALTH SCIENCE TECHNOLOGY DRUGS SOCIETY) :rel:d:bm:LM2EA4G14Q501
‘If subsidy looks unlikely, access schemes are retired, sometimes abruptly’. Photograph: Stefan Wermuth/Reuters
My naive puzzlement slowly turns into the realisation that almost every instance where a company has facilitated compassionate access to a product, it has been as a form of marketing as a means of gaining lucrative, government-subsidised listing. In the era of astonishingly expensive blockbuster drugs, government subsidisation is the holy grail of big pharma. The cost of treating a few hundred or even a few thousand patients for free (and in the process, securing the backing of doctors), is negligible when the ultimate prize is full government subsidy. Indeed, individuals and organisations including the UK’s NICE and Australia’s PBS are now questioning the feasibility of subsidising drugs that can cost as much as AU$200,000 a year for ambiguous benefit.

Compassionate access schemes for these incredibly expensive drugs might facilitate access for selected patients but they are not truly compassionate in the way that the average person understands. Pharmaceutical companies sell an ethically murky kind of hope than what doctors and their patients might understand. The benefit to the company must ultimately outweigh the benefit to the individual patient. If subsidy looks unlikely, access schemes are retired, sometimes abruptly. When a commonplace drug is neither vying for market recognition nor fighting for subsidisation, there is no incentive to provide it to a patient like mine, whose story would anyway never be the stuff of headlines.

You might ask the obvious question as to why it would take so long for an oncologist to figure out that a pharmaceutical company is not a charity. The common argument is that companies must necessarily recoup the cost of drug development, as only a small minority succeed in the marketplace.

But for every dollar spent on research, nearly twice is spent on lobbying and marketing – and it is also this expense that companies want to recover. From the time they are students, doctors are exposed to relentless advertising that big pharma is their companion in healthcare. The glory days of advertising saw doctors offered egregious forms of largesse, from conferences hosted in ancient castles and on cruises to lavish dining and entertainment. Then there were the rivers of pens post-it notes, stress balls and cute toys to influence prescribing. Regulation is much tighter today, but there is still plenty of money in sponsorships, paid speaking tours, adding one’s credible name to journal articles, and just promoting a drug to one’s peers, especially if you are anointed a key opinion leader.

Drug companies think nothing of sending a representative to wait for three hours in a clinic to spend five minutes with a doctor. Unlike other people, these people never ever express frustration at the ludicrous wait and are unfailingly courteous. They ask subtly about you, your family and your holidays. They probe your prescribing habit and tell you why your peers prefer their drug. They routinely ask what would make it even easier for you to prescribe their drug. It is impossible to navigate the discussion towards cost or what makes for the greater societal good.

And to be honest, it’s unseemly to be anything but polite towards someone who has waited hours to see you, seems genuinely nice, and from whom you might need a favour for your next patient. These favours are rare but the younger you are, the more impressionable. No wonder many medical schools and hospitals have banned pharmaceutical representative visits, hopefully signalling to doctors that the sandwiches have a hidden cost.

Eventually, I tell my patient that my request for compassionate access was denied. Crushed, she asks if she wasn’t important enough. “That’s not true”, I say unconvincingly, “it’s just the way it is.” She dies, with a few weeks to go before Christmas, leaving me to wonder whether the drug might just have bridged the small gap. I will never know, but feeling morally compromised by the whole exchange, I tell the drug company that I won’t see its representatives in future.

I didn’t expect an acknowledgment but when it came, it sounded like a thinly veiled warning that the visits were an essential prerequisite to receiving favours. An incredulous representative exclaims, “you would really do that, stop seeing us due to what happened with that one patient?”

But “that one patient” represented the human face of what happens when the interests of a patient and the pharmaceutical company don’t align. That one patient’s crushed hope felt no less important than the renewed hopes of another. What happened with that one patient finally opened my eyes to what has gone before.

It seems only right to start by paying tribute to my patient, while acknowledging my complicity in the thorny tangle of doctors, patients and drug companies.

To view the original of this article CLICK HERE
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Greg_L-W.
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I Have Been Fighting Cancer since 1997 & I’M STILL HERE!
I Have Cancer, Cancer Does NOT Have Me
I just want to say sorry for copping out at times and leaving Lee and friends to cope!
Any help and support YOU can give her will be hugely welcome.
I do make a lousy patient!

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Posted by: Greg Lance-Watkins

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