Showing posts with label melanoma. Show all posts
Showing posts with label melanoma. Show all posts

Tuesday, 1 March 2016

Surviving melanoma in Zealand (with a bit of luck)

This relates to material on the melanoma treatment situation in New Zealand, HERE

Surviving melanoma – Pam and Robin’s experience
Seemorerocks


I would like to talk a little about my own experience along with that of my partner Pam.

Both of us have been melanoma patients and both had operations done.

In Pam’s case this dates back to 15-16 years ago. She had a melanoma removed from her hand. The only follow -up was regular checkups at the hospital Within a couple of years (and within a couple of weeks of a regular checkup) she felt something wrong in her armpit. When a biopsy was done it was found that she had a secondary melanoma so she had an operation to remove her lymph glands.

The only response of the System was to have several sessions with an oncologist who gave a grim view by quoting survival statistics, but had nothing else to suggest.

In the meantime we decided not to rest on our laurels and Pam treated herself with Gerson therapy that consisted of mostly vegetable juices, a diet and coffee enemas. We were amused when Pam’s first juice coincided with a visit to the hospital; when she fainted they asked her if she had a cold (!).

As I was in practice at the time I treated her with NAET (Nambudripad’s allergy elimination technique) with, among other items an energetic copy of her tissue sample)

As luck would have it she was told about a melanoma vaccine trial being run at the Sydney Melanoma Clinic by Prof. Peter Hersey.

Oh yes, said the oncologist at the hospital, there is a trial in Queensland too (that they weren’t going to tell her about) – but that is a double blind trial.

There was no way she was going to opt for something that possibly involved a placebo so she opted for Sydney despite no encouragement from the melanoma clinic at the hospital).

Prof. Hersey was a totally different person from the Wellington people. He sent Pam back with a chilly bin full of vaccines which were administered by the nurse at the medical centre where I worked at the time. This went on for two whole years with two trips back to Sydney and with bi-monthly blood tests for the cancer antibody (which stimulates the production of T-cells that detect and fight invading cancer cells)

From all the people that had travelled to Sydney anecdotally at the time not one person had died from the disease.

Pam was eventually cleared by the Wellington hospital (with yet another spouting of statistics) and taken off the books.

Fast forward to 2013. Also through not “feeling right” about a mole on my midriff I went to a locum doctor who although initially vocally sceptical decided, on second thoughts, to remove the mole and send a tissue off to the hospital.

The tissue proved positive so I was sent off for an appointment with the surgeon.

The whole picture had completely changed.

Prof Hersey’s melanoma vaccine trial had been wound up and whereas we had previously been told that melanoma was seen as a problem of the immune system and that chemotherapy was ineffective in treating melanoma we were now fed a completely different story.

The drug companies had come up with a new generation chemotherapy and that was all that was available.

So for me there was no possibility of immunotherapy.

The only route was to have a preremtory six-monthly check-up at the hospital. After that it has been relegated to my GP (who coincidentally is a specialist in this area but had absolutely NOT HEARD, not only of Prof. Hersey’s program but of vaccines in general.

Not so my usual doctor, William, who referred me to a story from his hometown, Vancouver, about a doctor who had disciplinary action taken against him for using an unauthorised treatment (a melanoma vaccine) on a patient.

When I came to write this article I could not find anything on this although I did find this, involving a naturopath from neighabouring Washington.



As an aside it has always seemed amazing to me that a clearlly-effective (but simple) blood test for cancer bodies was OK to check progress but was not authorised as a diagnostic tool, leaving only the clearly ineffective manual check-up as the only tool – it had clearly failed Pam who picked up her secondary growth two weeks after such an examination.

The situation in New Zealand, one of two melanoma capitals in the world and where one person dies every day from melanoma, is dire.

I therefore support efforts to get government funding for the breakthrough drug treatment, Keytruda so it is available for patients generally, and not just for those with the large amounts of money to fund treatment themselves.

However I do ask myself the question of why there is no support (and little support) for effective and simple remedies such as cancer vaccines.

Why is it next to impossible to get any acknowledgement that such a treatment does, in fact exist.

I have to ask myself why Prof. Hersey’s programme at the Sydney Melanoma Clinic was discontinued.

I think I know the answer.

It reads, simply, BIG PHARMA.

...

P.S. Comments from Pam

I understand that any treatment of melanoma, once cancer cells have invaded the lymphatic system, blood stream and organs will probably have a low success rate.

Early detection and treatment offer the best chances of survival. Why, therefore, is the proven, effective and cost-effective immunotherpay not available for stage 1 and stage 2 melanoma patients when it could save so many lives?



Drug treatment for melanoma in New Zealand

The treatment of melanoma in New Zealand - along with Australia the melanoma capital of the world - is a disgrace.

There has been discussion about the government Pharmac funding a drug that has been proven successful but unavailable in this country unless you are rich enough to be able to und your own treatment.

A petition is being delivered to parliament today.

I have discussed my (and my partner Pam's) experience HERE.

Here is an email I received on this.

In New Zealand one person dies every day from advanced melanoma

Dear Robin,

I’m 45 years old and I have Stage IV Advanced Melanoma. This means the melanoma has spread to other parts of my body including my organs. It is very aggressive and chemotherapy and radiotherapy will not cure my cancer.

The public health systems in places like Australia, the UK, and Canada, fund new cutting-edge, life-saving treatment for advanced melanoma.

But here in New Zealand, Pharmac has said it cannot fund such drugs. They simply don’t have enough money to fund new, breakthrough drugs, because they haven’t seen a real increase in funding in the last three years.

In New Zealand, one person dies every day from advanced melanoma. Yet the Government does not offer any significant treatment for those with the diseчase.

Tomorrow, I’ll be joining other advanced melanoma patients and their families to deliver our huge petition to Parliament, demanding the government fund a new drug - Keytruda - which is showing the best results ever seen in treating advanced melanoma.

Annette King, Labour’s Health Spokesperson, has agreed to meet us to hear our stories. But so far, the National Health Minister, Jonathan Coleman, has declined to meet us.

But we still continue to hope he will change his mind.

If you’re in Wellington tomorrow lunchtime, please come and join us to deliver our petition. Please show support for those of us campaigning on this issue. We’re meeting in front of the Seddon statue in front of Parliament at 12.15pm. It would be great if you could be there.

Thanks for your support so far – it means the world to us.

Yours sincerely,

Kathryn Williams
Patient with Advanced Melanoma

PS. The more people who sign the petition, the stronger our message to Jonathan Coleman will be. If you haven’t signed the petition yet, click here to add your name before we deliver it to Parliament tomorrow.

Here is some coverage from Radio New Zealand and John Campbell (on Checkpoint)


Melanoma survivor calls for Pharmac to fund Keytruda






1 March, 2016


A terminally ill cancer patient who paid for her own melanoma treatment and survived is taking a petition to Parliament calling for drug Keytruda to be funded.
Australia, Canada and Britain subsidise pembrolizumab, known as Keytruda, which can stall and shrink tumours in some patients.

However, in New Zealand, Pharmac has given it a low priority, saying they are waiting for the results of further studies of the drug's effectiveness.

Cancer survivor Leisa Renwick on Checkpoint with John Campbell, discussing Pharmac's decision to give a low priority to melanoma drug Keytruda. Leisa Renwick will take a petition to Parliament today.   Photo: RNZ / Checkpoint

Cancer survivor Leisa Renwick will present the petition to Parliament today calling for Keytruda to be made available to all New Zealanders who need it.

Ms Renwick had been told by doctors she would live for only a few weeks but, after paying for her own treatment, which could cost over $10,000 a month, she has survived.

She had wanted to meet Health Minister Jonathan Coleman but said he had refused, saying he was too busy.

The petition was a last-ditch effort and people would die if they couldn't get the drug, she said.

"There is no other treatment. There is nothing else. By standing back like Pontius Pilate, and washing his hands of the affair, he's condemning people to die and to die fast. If he doesn't do something, the people who are coming to see him in Wellington will die."


Dr Coleman told Morning Report that Pharmac made its funding decisions independent of government - and this would have been a difficult decision to make.

"It's really difficult. The issue is, there's $800 million in the Pharmac budget and Pharmac has to make decisions on the drugs that will benefit the greatest number of New Zealanders, so it's making priorities. There's other drugs, it's trade-offs within that budget.

"But what I can say is we're having obviously the government's budget on May 28th and that budget always gets more money for health, and I will be making the case to increase Pharmac's budget."


He would be at Parliament to receive Ms Renwick's petition, he said.

"Originally and usually, these things are presented to the local MP but I'm going to go down there and see them."

Labour leader Andrew Little said the government should override Pharmac's decision and make Keytruda available to all New Zealanders, as there were no alternatives to it and melanoma was a common cancer in New Zealand.

no captionHealth Minister Dr Jonathan Coleman has responded to criticism of Pharmac's decision to give Keytruda a low priority.   Photo: RNZ / Alexander Robertson

Pharmac underspent its budget by $30m last year and money should be put up to fund the drug now, he said.

"Let's have a fund that can take new drugs, like this, newly available, funded for a period of say two years so that we can continue to get the clinical data and the field data, but knowing that because other countries are using it that it is effective."

Listen to Mr Little on Morning Report ( 4 min 8 sec )

Mr Little agreed Pharmac was an independent body but said the government should sometimes step in.


Dr Coleman said, with hindsight, that was the wrong decision.
"As the PM has said and I have said, look, actually, on reflection that was not the right thing to do ... We've got to let Pharmac make these decisions without political interference and we wouldn't be doing that again in the way we did with Herceptin."

PM: 'Not going to rule it out'


Prime Minister John Key said, at the moment, the decision on whether to fund Keytruda was in Pharmac's hands.

There had always been debate over what the drug buying agency should spend its money on, he said.

"We're also going through the budget process now as you'd expect and so there's obviously a high expectation that there'll be more money for health and potentially therefore more money for Pharma.

"So I'm not going to rule out that it gets funded in the future [but] at the moment, that's in the hands of Pharma."

Mr Key said the pharmaceutical industry created new drugs all the time, and not all of them were successful.

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