Patient Testimonials
June 19, 2000
International Myeloma Foundation
12650 Riverside Drive
Suite 206
North Hollywood, CA 91607-3421
Dear Sirs:
After reading Stephen Walker’s article “A Patient’s Experience: Never Give Up” in the June, 2000 issue of Myeloma Today – as well as pervious similar experiences shared by other patients and caretakers – we hope to share something with you.
My wife Barbara was diagnosed with advanced stage multiple myeloma (more than 90% cancer cells) in November 1997. She underwent aggressive chemotherapy for about 13 months until December, 1998 with the goal of reducing the tumor cells to a low enough level so that her cells could be collected for an autologous blood stem cell transplant. She spent 164 days in the hospital (NYU Medical Center in New York City) during this initial 13-month period, not only for the regular chemo sessions, but also was admitted on a number of occasions on an emergency basis for infections, high fever, etc.
After undergoing the above, we were devastated to learn in December 1998 that her condition was refractor and the chemo was not really working anymore. The cancer cells remained at too high a level (about 60%) to collect the stem cells, and she was in a too wakened condition to undergo the transplant in any event.
It was at this time that her oncologist, Dr. Alec Goldenberg at NYU, recommended Thalidomide. Barbara was started on an initial dosage of 200 mg. Per day, eventually rising to 600 mg. Per day - the level she continues to take to date. Miraculously – through the efforts of Dr. Goldenberg and our ever-increasing reliance upon Our Lord and His Blessed Mother, our archangels and other saints – the cancer cells have been almost entirely eliminated (to about 5-10%) and Barbara’s stem cells were collected this past October 1999 for the transplant. Since the Thalidomide is still working, and Barbara is getting stronger (we recently went on a two-week vacation to Italy), the consensus is to hold off on the transplant for the time being.
From the statistics I’ve been reading about the Thalidomide tests, it seems that Barbara is in that fortunate to 10% in results – Thank God!
This leads me to something else we want to share with you. Barbara has been undergoing a bone marrow biopsy ever 2-3 months to keep tabs on her progress for obvious reasons. I’m sure you can all identify with the unpleasantness of this procedure, especially in cases, such as Barbara’s, where she has suffered substantial vertebral compressions, fractures, etc. Lying face down on the table is painful enough, never mind the procedure itself – notwithstanding the painkillers. We are pleased to report that this “problem” has been substantially alleviated in Barbara’s case. In fact, Barbara commented, after her most recent bone marrow biopsy on Wednesday, June 14th, by Dr. Goldenberg that it was not only the fastest, but also the least painful bone marrow biopsy. The recent bone marrow biopsy procedure by Dr. Goldenberg have been progressively less uncomfortable.
The reason for this?! What we have fondly come to call “the Goldenberg Needle.” It seems that Dr. Goldenberg has developed a new needle for bone marrow biopsies, for which he has obtained a patent, which Barbara has found to be tremendous. I believe it is called the Goldenberg snarecoil bone marrow biopsy needle, and it seems to work as follows:
The needle is inserted into the bone as is done with other biopsy needles. Once the needle is in the bone far enough, the doctor rotates a lever in the handle, which grabs the specimen. The needle is then simply withdrawn without having to move it around in the patient as is necessary with the typical needle, eliminating the pain associated with this step.
Neither Barbara nor I have any financial interest in this development. We merely want to share this “good news” with our fellow patients and caretakers who may want to look into it.
It was I who asked Dr. Goldenberg if he minded if I mentioned the “ Goldenberg Needle” in a letter to Myeloma Today, and he agreed it would be appropriate.
If anyone wants to find out more about this,
they can contact Ranfac Corporation. at 1-800-272-6322.
Raymond J. McRory
