This morning in the post I received this remarkable picture. "What's remarkable about it?" you may ask, "Just an old couple cutting a cake." Edith and John are celebrating their Diamond Wedding anniversary.
Eighteen years ago John had been given just a few weeks to live. He had been diagnosed with kidney cancer which was regarded as inoperable. His lungs were almost totally replaced by secondary cancer and he had very large lymph nodes in his abdomen. There was no effective chemotherapy for kidney cancer, and in fact the recommended treatment was the female sex hormone, progesterone. This did no good, but it was pretty harmless.
About that time there had been a television program about a new type of agent called interleukin-2 (IL-2). It was a terrible treatment. Patients suffered terrific shivering attacks, their blood pressures dropped, they went into kidney failure, some died of heart failure, some developed horrific rashes, but some got better.
John came to see me. I wasn't sure who mentioned IL-2 first, it may well have been him. Ar first I dismissed it out of hand. It was not a licensed product. It was impossibly expensive (£9000 then seemed an awful lot of money when you find it difficult to get the NHS to pay an extra £300 for mitoxantrone).
John offered to raise the £9000 but even then there was a rule that if you paid for your drugs privately your whole treatment had to be private. Had we gone down that route we would have been talking about £25,000+.
Instead I suggested that John make a contribution to our research fund so that we could start a clinical trial of interleukin-2 in kidney cancer. I wrote a protocol and got ethical approval even though I knew that without funding I would only be able to treat one patient.
We weren't really sure what to expect, but my team were up for it and we gave John the drug. The toxicity was bad, though not as bad as it had appeared on television. All the secondaries disappeared and the cancerous kidney shrunk to such a size that it could be removed.
When we took this result to the company that made it, they funded me to treat another 24 kidney cancer patients, 25 melanomas and 10 colon cancer patients. We had one other kidney cancer complete remission, and she also is still alive, and 5 complete remissions in melanoma patients, but they all relapsed within a year. One of the colon cancer patients had a partial remission.
Several points to learn from this. The median is not the message, as Stephen J Gould said. Despite a poor median survival, some patients do very well on strange treatments that have no apparent survival benefit. Patient drive and determination is sometimes the most important factor. The looser arrangements for clinical trials that used to obtain had their good points as well as their bad ones.
In 1991 I was at the peak of my powers. Everything I touched turned to gold. My confidence was high and I felt I had magic in my fingers. What a dangerous state for any man to aspire to! If I felt like that now I would seek absolution.
11 comments:
Dear Dr. Terry,
Wow! This is an highly inspiring story. Never give up! And I love this idea of "Research Funds' as well!
Thanks for sharing it with us!
Denis L.
Such an inspiration! I can only imagine how grateful this wonderful couple is to you for your confidence and desire to help.
Thank you for your work!
Your wonderful story moves me at so many levels.
When a treatment has no statistical value, and has horrendous side effects, how can one decide to offer such an option to your patient? And yet how can one withhold it, knowing that there are stories like the one you just shared?
When the end is clearly near, the tipping point can change, but even that is never black and white.
Good on you and good on your patient for taking the risk.
I'll bet NICE would not approve of IL-2 for treating any cancer based upon the clinical trial results.
It's fore renal cancer that NICE refuses to pay for the latest drugs, arguing that the months that on average that are gained are not worth the money (try telling that to the patient).
However, one renal cancer specialist, when I told him about this conundrum, told me was that the clinical trials were done on the sickest, most hopeless patients, and many of his patients are doing extremely well. Of course, that is in the United States, which temporarily has avoided socialized medicine.
It's a shame that a system has been set up in the UK and elsewhere that is driven almost totally by cost, and very little is devoted to the desperate patients who cling to hope.
Sorry! No miracles for you!
This story is an encouragement. Is Interleukeran 2 used for anything now?
NICE has just done a deal with the paharmaceutical company and will noe recommend Sunitinib, the best of the 4 new drugs, for use in NHS patients.
IL-2 has a few minor uses, but very few people would consider it a viable treatment for cancer. Of the around 100 patients that I treated only three are still alive and certainly there were three who died of the complications of the drug.
It is my understanding that IL-2 is still used for renal cancer in the US. That may have been before the latest drugs, but I've seen recent mention of it.
I saw the news about Sutent (Sunitinib). This is good news, though I'm sure it comes way too late for the many who have died waiting for approval.
I personally think the UK should have approved all four drugs, since we know (for example) the only approved drug for CLL, Campath, isn't the best drug in every situation for every patient.
The more choices, the more robust the armamentarium, the better, in my opinion.
In any case, a wonderful story indeed!
Wow what a story. Thanks for sharing this with us Dr. Hamblin.
Great story and wonderful pic! Thanks for the encouragement! Thanks, too, for all the writing you do and for sharing your memories and thoughts. I haven't always commented (am new to the CLL game) but have gotten a lot out of my stops here in recent months.
Thank you Terry for being here and posting such inspirational stories. I found this especially helpful today when I read it and I believe timing is everything.
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