Yesterday I introduced you to long-lived myeloma survivor, Roz from Florida. I wrote how “she has four children, six grandchildren, and three great-grandchildren. Roz was diagnosed with both multiple myeloma and amyloidosis way back in 1997. To me, the fact that she’s still alive and well is inspirational!”
I added that Roz has been in remission for almost 14 years, without using maintenance therapy. That’s an exceptional response to what was an experimental procedure back in 1998.
So how did she and her doctors do it? What was it like to undergo such intensive, life-threatening therapy? Let’s let Roz tell us in her own words:
In 1997, I lived in the hills above Martinez, California, and worked in San Francisco as a legal secretary. I was very active – fitness walking (I gave up running due to bone spurs) and extensive bicycle riding. That Fall I noticed I was gradually feeling weaker and unable to complete my usual pace walking the hills. I didn’t see my doctor for a few months because I was scheduled for a physical in February. A few days after my physical, the doctor called me at work to inform me that I was severely anemic and would need more blood tests.
Since I have two siblings who had survived colon cancer, she thought I might have internal bleeding, so she sent me to a gastroenterologist, who performed a colonoscopy and an endoscopy, which was negative. I began seeing an oncologist who determined by May that I was in kidney failure. The nephrologist had no explanation for my kidney failure, and I continued on Epogen shots. Each of the specialists ran blood work each week, my blood pressure soared, and although I was following a renal diet, my potassium level was so high I needed medication (Kaexolate) weekly. By the end of 1997, I was in congestive heart failure, but the doctors didn’t recognize it until February 1998 when I finally had a chest x-ray.
A week after an emergency thoracentesis, the fluid returned, so I was hospitalized for a kidney biopsy, resulting in a diagnosis of amyloidosis. Although my oncologist insisted I didn’t have multiple myeloma, she finally performed a bone marrow biopsy, and I was indeed diagnosed with stage 3B cancer.
I returned to the hospital, John Muir in Walnut Creek, for “aggressive” chemo. I was given Vincristine, Adriamycin, and Decadron. Shortly after my release, I returned to the hospital with ileus (digestive paralysis), severe neuropathy, and lockjaw. After 10 days, the ileus resolved and I was released.
Within a couple weeks, I contracted bacterial pneumonia and was hospitalized for three weeks in the cardiac care unit. After two months’ recovery, I was given melphalan and prednisone in pill form to take at home. Also, I went to the hospital often for 10-hour immunogloulin infusions. Another bone marrow biopsy showed improvement, and by September I was on Interferon shots. This drug’s side effect was a nasty rash. Next, my new oncologist offered a bone marrow transplant.
My insurance company agreed, but insisted the transplant be done at Long Hospital, University of CA, San Francisco, due to their higher number of procedures. After many tests to determine my eligibility for transplant, I was given several Neupogen shots to increase my cell count, a high dose of Cytoxan (horrible side effects), and then spent two days collecting stem cells at the transplant hospital.
EDITORS NOTE: Autologous stem cell transplants were far more dangerous back in the 1990s than they are today. Statistics mimicked results from allogeneic (donor) transplants now.
My transplant experience was horrific. I had been warned that they didn’t expect me to survive, and I had read all the literature, but it was worse than I had expected. I was on oxygen from the first day. Many tests were done, such as arterial blood (several times), thorough heart and lung tests, but it wasn’t determined until after I was released that the drug Dapsone had altered my red cells and they were no longer carrying oxygen properly. I became “altered” due to urea on my brain and was put on continuous dialysis, suffered a heart attack, and spent 6 six days in ICU. Surprisingly, I survived and, although I was not able to eat yet, was sent home. My children were told that I wouldn’t live long.
I was beyond weak, continued to bleed, any attempt to consume food went immediately through or back up, and was taken to dialysis 3 times per week, where they informed me I would never get off dialysis. Three months later, my nephrologist took me off dialysis and my kidneys began to function. A month later I decided to sell my home in California and move to Florida to be near my daughter and grand kids, who had moved there the previous year. Although I was still very weak, my son drove me to Florida, over several days, and I’ve continued to live here ever since.
As soon as I was strong enough, I began walking to my mailbox, then walking to the stop sign, then walking down the block, etc. Eventually, I began playing piano for my neighbor, who taught Suzuki Strings. Next, I started singing, and subsequently playing piano, at church. Our choir director was also the chorus teacher at Springstead H.S., so I began playing for the chorus classes there also. Currently, I’m playing piano for chorus classes at Weeki Wachee H.S., Springstead H.S. occasionally, Chocachatti vioin classes, and occasionally playing at various church services.
I have four children, six grandchildren, and three great-grandchildren. I have had a total of five bone marrow biopsies, the last two after my transplant found no active myeloma. I’m sometimes a little anemic and other blood cells are often lower or higher than normal, but there has been no need for further treatment. I have had several illnesses, such as shingles, bronchitis, etc., but am remarkably healthy considering my condition prior and immediately following my transplant.
I have one word to describe your experience, Roz: AWESOME!
Here’s a timeline that Roz graciously put-together for us after I interviewed her. It breaks-down her difficult early years following her diagnosis:
2/1997 – physical, showing anemia
5/1997 – kidney failure
9/1997 – severe high blood pressure; lost vision in left eye due to burst retinal blood vessels
12/1997 – pleural effusions
2/1998 – kidney biopsy; diagnosis amyloidosis: 1st bone marrow biopsy; diagnosis multiple myeloma: VAD
3/1998 – ileus; bacterial pneumonia
5/1998 – melphalan, prednisone
7/1998 – 2nd bone marrow biopsy
8-9/1998 – Interferon
10/1998 – preparation for PBSCT
11/1998 – 3rd bone marrow biopsy showed myeloma at 25%; pheresis (stem cell collection)
12/1998 – transplant; dialysis; heart attack
2/1999 – 4th bone marrow biopsy, no detectable myeloma
3/1999 – return of kidney function
5/1999 – moved to FL
9/1999 – last bone marrow biopsy, no detectable myeloma
6/2001 – first normal hemoglobin count
Thanks, Roz! I’m looking forward to spending more time with you soon. So if any of you have questions for her, comment here or email me and I will pass the questions along.
Feel good and keep smiling! Pat
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