June was a blockbuster month for myeloma patients. For the ten years of my active disease, only one drug had been specifically approved for myeloma use – Velcade. But within a month, both Celgene products, thalidomide and revlimid have been approved for myeloma treatment. Although thalidomide was already being prescribed widely through an off-label policy, revlimid was only available through trials, and only recently did those trials expand so that many more patients could take advantage of what appears to be a tremendously good treatment. Now, those of us with bone marrow cancer can have our doctors prescribe these drugs, perhaps in combination with others.

As it stands, the Revlimid’s approval stipulates its use with a high- dose treatment of dexamethasone. In late 1998, I was one of the first patients to take thalidomide outside of a small trial that was being conducted in Arkansas, and I was among the first couple dozen patients to enter a Phase 1 trial for revlimid at Dana Farber. “My Odyssey” describes some of these experiences, but with the new approvals, I thought it might not be a bad idea to go into some of my personal experiences with a little more depth– the ups, mainly ups, but some of the downs, too.

Almost immediately, after taking thalidomide for the first time during Halloween weekend of 1998, I began to feel better. At the time, my bone pain, the canary in the mine shaft, was increasing, and so too was the cancerous plasma count in my marrow. I needed more aggressive therapy, and a transplant was high on the list. At the time,  I read about the great success experienced in Arkansas with thalidomide use on last-stage disease, and I was very anxious to give it a try before going the high-dose chemo route of a transplant. My doctor at Yale, Dennis Cooper, is the head of the stem cell transplant program, but above that, he is a great doctor. He respected my needs and went after getting information about dose-levels of thalidomide. That was nearly impossible. Dr. Vincent De Vita, the former head of the Yale Cancer Center also used his contacts to find out similar information. But at the time, nobody seemed to know what the proper dose should be for myeloma patients. After all, its use for this disease turned out to be a pleasant surprise, and it had only been approved for use in leprosy. But because thalidomide had been approved by the FDA, even just for leprosy, a doctor was able to write “off-label” prescriptions for other diseases, including myeloma. But that dose issue was major.

So, I started softly with 50 milligrams – one capsule, then slowly esculated to 100, then 200 mg. At that point, I was sleeping better than ever before. I was receiving my first 7 or 8 hours of sleep for the first time in memory. Thalidomide is a sedative, and that is why it was initially prescribed to pregnant women many decades ago. But the side effects upon the growing fetus were horrendous and tragic. Thalidomide was pulled off the market, but then resurfaced, with precautions dealing with child production and bearing, as a treatment for leprosy. Ironically, the very problem with pregnancy, interfering with the blood supply to a fetus, became a great problem for cancer cells, too. Without that blood supply, cancer cells will diminish, or even die. These are anti-angeogenic properties of many newer targeted drugs. But thalidomide was also working at other levels such as getting at growth factors of tumor cells, increasing the disease-fighting cells, and helping to dislodge the tumor cells from their comfortable, but trouble-making home in the marrow. So, I had no problem with increasing the dose even further – at one point, I was taking as much as 1600 mg a day, that was up from 800 which as it turns out, is way off the charts. My experience was a trial of one – trial and error.

But my bone pain diminished, and I was getting around much better – just the increased rest was a plus, at least initially. But within one month, my serum protein dropped by 25 percent. Then, within the next month, this cancer marker dropped another 25 percent – it sounds like a price reduction at a department store, and I took another 10 percent off that number by the third month. The cancer level was becoming a mere shadow of its former self, and except for side-effects, I didn’t even feel as if I had myeloma.

My run up to 800 milligrams, and eventually, although briefly, my excursion into 1600 territory led to serious numbness in my hands and feet – neuropathy which has turned out to be permanent. After I scaled back the dose, I still had neuropathy. Although, today, the level of numbness has diminished by about a third, nearly 6 years after leaving thalidomide, I still have moderate to serious neuropathy. Dose levels for thalidomide are now greatly reduced to 100 or 200 mg, possibly up to 400 mg, but in combination with an enhancing steroid, there really is no need for the higher dosages, and too high a dose can lead to more complications which can develop as a swelling around one’s legs, and the growth of blood clots, or deep-vain thrombosis. Thalidomide also causes serious constipation. So, the drug is potentially dangerous, and its side-effects need to be monitored closely, but overall, it works wonderfully well in fighting the cancer cells, and I would still be taking thalidomide if it weren’t for its apparent reduced effectiveness for me after a couple of years of use. Bring on revlimid.