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Roberta Winter
09.01.00

Pasadena, CA; rdw112233@aol.com

1930 / Class of '96 / Kappa Light Chain / Last Update: 9/00

I'm a mother of 4 daughters, and lived and worked with Mayan Indians in Guatemala for almost ten years.

Prior medical history: Undiagnosed hypothyroidism for about twenty years with extreme exhaustion; some contact and food allergies (mown lawn, perfumes, tetracycline, some sulfa drugs, etc.) At one point I tried out Dr. Mendell's 4-day elimination diet to try to isolate the food allergens.

Prior surgeries: Tonsillectomy/adenoidectomy; salpingectomy (removal of right tube) along with appendectomy; thyroidectomy; surgical removal of large fatty tumor on rt. upper arm; the day before bone marrow biopsy I had a cholesystectomy (keyhole) with 31 gall stones removed—this last one done at Kaiser in-and-out surgery.

I was diagnosed by MRI in October '96 for a one inch long tumor embedded inside my spinal column. My precipitating symptom was non-iron-deficiency anemia with tiredness followed in a few weeks with extreme pain in my right back radiating to the front because of the tumor at T7-T8.  aught early because we had just joined Kaiser and my annual physical caught the anemia. Nine months previous I had carpal tunnel in both wrists which took several months with braces to heal.

At the same time (unrelated?) I was diagnosed with Kappa light chain, secretory MM. Dr. Durie told us my type of MM is the easiest type to treat. I was immediately given Decadron plus 11 radiation treatments directly on my spine (since the tumor was pressing against the spinal nerve. Agony!). Their best neurosurgeon operated on me at midnight or I would be permanently paralyzed, he explained. Now, a year later, I walk with a decided limp and rather slowly. But I walk.

However, one nearly disastrous result of the Decadron was thrush in the mouth and systemic fungus (candidiasis) so bad that I could hardly eat or drink and almost died of malnutrition twice in a few days. The radiologist said to get cough drops. The onc. gave me Swish and Swallow (Nystatin) which helped the thrush but did nothing for the candidiasis. At a very low moment a friend's aunt (chief of staff at a hospital in Nebraska who had had 14 Myeloma patients) visited me in the hospital and said we should insist on my getting diflucan (fluconizole) every day to fight the fungus. Well, whew! That pulled me out. (I had lost 30 lbs in three weeks.)

After getting out of the hospital (2 times) and the rehabs (2 times), our daughter was told to just take me home and make me as happy as possible because they couldn't do much more for me.

That's how we decided to try alternative therapy in Mexico, just 2 1/2 hours away. There are 35 cancer clinics there with patients from all over (a large number from Canada), as well as many with diseases other than cancer. I did not feel the clinic we chose knew too much about Myeloma, but I did begin to feel healthy again and gained back the weight I had lost. Each month we had the same blood tests done at each place (to test the Mexican clinic's accuracy). Each time the results were identical, although we got the results much sooner in Mexico and they were very professional in appearance by comparison. The clinic was very modern and clean, with its own lab. It was always full of patients with smiles, most of them from the U. S. or Canada.

The clinic we went to in Tijuana is only about 6 blocks from the border and highly recommended to us by friends in San Diego who go to this doctor for everything. He has found things others have not. His name is Dr. Isai Castillo. Dr. Contreras is better known and has a large modern hospital, but is much more expensive. We always gave a copy of my Mex. treatment plan to my Kaiser doctor, but she barely glanced at it, obviously feeling that if it was Mexican it had to be substandard. We did not find it so. In fact, this doctor uses chemo and does surgery also, when necessary. But he tries more natural means, vitamins, diet, etc., first. I could detail more of the Rx I got for anyone interested. Anyhow, I felt good, though I still couldn't walk well.

Unfortunately, 8 months later I began to have pain in my right groin. My Kaiser Onc said maybe it was a pulled tendon, but she started doing several tests: X-rays, etc. The MRI done in late November 97 finally showed a lytic lesion on the right femur neck as well as 3 others which were not as bad. (Boy, was that MRI painful because my leg had to be flat on the table.) My IgG, which had dropped with the Decadron and radiation the year before from 3200 to 800, had again risen to 1500, then back to 3200.

Because my hospitalization experience at the HMO had been so discouraging, we struggled with leaving the HMO and going to either Cedar Sinai (with Dr. Durie, whom we had seen for a second opinion) or to the City of Hope, 20 minutes away. We preferred Dr. Durie, but his office (at Cedar Sinai) is more than an hour away with a lot of traffic each way, and it seemed we were always running to the hospital and would have to continue doing so.

So Jan 1, 1998 we moved my Rx to City of Hope. (Now I am simply under Medicare, plus a Medicare Supplement which does not pay for medicines.) My onc at City of Hope started me immediately on 4 day VAD transfusions and had a Hickman catheter inserted in my superior vena cava. That worked well for the infusions of VAD and Aredia (which Kaiser had refused to give me until I was in 2nd stage.) By Nov. 97, after seeing my MRI report, the Kaiser onc admitted that I was at least in 2nd stage. Unfortunately, after 2 months, the catheter stopped working for drawing blood, and my arm and hand veins were really hard, rolling away from the needles, etc. I had 4 months of chemo, with my markers coming into the normal range except for the IgA and IgM. City of Hope specializes in BMTs and Stem Cell transplants. But I am 68 1/2, and prone to fungus infections, so decided against that because I was frankly afraid that the final strong one-day chemo prior to the transplant might kill me. My doctor seemed to agree with our decision.

On June 9, they replaced the first Hickman catheter with a new one, thinking we might still go for the Stem Cell transplant (which they do until age 70). One week after that surgery, I started swelling up. My face became like a balloon, my arms and hands were swollen, my arm pits hurt, my jaw hurt, my teeth tingled, and my head felt like it would burst if I leaned over at all. A chest X-ray, an echogram and an ultrasound all revealed nothing. So the doctor punched around on my (non-swollen) ankles and said it must be my kidneys. It was now a month after the last chemo, and I had never swollen with chemo. We couldn't believe that the answers we had been given were right; I was getting worse, not better with time.

So we decided to consult by phone four close friends who are eminent doctors. One was the head of the oncology dept. at Loma Linda, and he seemed a bit puzzled. But he was leaving the next day for a family reunion and promised to call us when he got back. Two days later, Saturday, I was really miserable and getting more and more swollen, so my husband got on the phone to the 3 other doctor friends (a cardiologist in Boston, a surgeon in W. VA, and a chief of staff of the hospital in Nebraska). All three said, "Find a hospital with a vascular surgeon and get to ER today. Don't wait for Monday."

The closest ER was right here in Pasadena. But the doctor in charge insisted on calling City of Hope to find out why we did not go there; she couldn't talk to our Onc there, and, in any case, did not feel it was an emergency. She wanted to send us home. But my husband told her, "We did not come here on our own decision. We were sent by a knowledgeable doctor, who wants you to call her." The ER doctor, understandably perhaps, didn't think anyone "in Nebraska" could be very helpful. But, she finally called her. Later, this doctor in Nebraska told us it took her 15 minutes to persuade the ER doctor to do a venogram with dye. Not more than 15 minutes later, the radiologist pointed out on the x-ray that there was a blockage of some sort under my sternum (breastbone), probably a clot, and I was admitted to the hospital for heparin treatment to thin my blood and hopefully dissolve the clot. After three days of treatment nothing seemed to change or to improve, perhaps got worse.

Meanwhile, my husband faxed our doctor at the City of Hope as to what we had done and found out. He wanted us to return there, which we did on Tues., but only he promised to follow the same heparin treatment. Once I was there, they decided to do a chest Cat Scan using dye in my chest veins, and they found a clot larger than an English walnut lodged in my venous return system. The Onc told me that by then it may have become fibrous, not likely to be dissolved, but that collateral smaller veins would eventually enlarge to take up the job of returning venous blood to my heart.

So, I was in that hospital for another week, getting heparin and later Coumadin every day, my blood prothrombin level being checked every day so as to not run the risk of internal hemorrhage. Finally, although little change took place and many scary symptoms still remained they released me to go home on oral warfarin (the generic name for Coumadin, though it might not be quite as effective, we are told).

I am now home, slightly better, trying to sleep with my head and shoulders elevated, some days still miserable with a feeling of a great big clog just below my clavicle.

Two other items:

1) For those of you in the Midwest, I would recommend Dr. Judy Butler in Nebraska (chief of staff at her hospital). She explains everything so carefully and is so knowledgeable, has had 14 MM patients. I don't think she is an Onc, but for me she has been better than my Oncs except for Dr. Durie, whom we think the world of. (I wish he weren't so far away!) Dr. Butler in Nebraska has now twice intervened very strategically.

2) We found out from SSI that if a couple's combined income is less than $25,000 per year, some pharmaceutical houses offer certain drugs free. The SSI can give you the phone number to request the booklet. They check on your IRS income, then send you the booklet to give to your doctor, who has to fill out certain forms. They might even give you one to keep. Amazingly, our Onc didn't know about this.

September 2000: I have been on Thalidomide since the fall of 1998, long before it became approved by the FDA for Myeloma. With 4 day/month pulses of Dex, it brought my IgG down within weeks to near normal. I started Thalidomide at 200 mg a day. But after 5 months I started getting facial swelling, upper lip swelling and tongue swelling. The tongue swelling really worried me since my right vocal chord is permanently paralyzed due to a botched thyroidectomy in 1973. So at Dr. Durie's suggestion I started lowering the thalidomide dosage and for a number of months now have been on the minimum of 50 mg at bedtime. He also suggested I go on 12 mg of Dex for only one day every two weeks. But my IgG is beginning to creep up, so with my City of Hope oncologist's approval I increased that to 16 mg. for two weeks, and it came down again. But when I went back to only 12 mg for two weeks, it went up again to 2800. Sigh!

When first diagnosed, I was with Kaiser HMO, but they refused to give me Aredia until I was beyond Stage I, and by the time they decided I was ready for it I was already in Stage 3.

I switched to City of Hope at the beginning of 1998 mainly because I like the hospital so much better, and the grounds there are gorgeous. I now get Aredia every three weeks (in three hour infusions with a good flush) since all my bones except in my skull are full of holes. I have some compression in Lumbar 1 and Thoracic 11 and 12, but no fractures anywhere except in the neck of the femur in late 97, healed by four zaps of radiation. I get headaches and nausea.

I try to be very careful what I eat: practically no sugar, restricted salt, as an experiment no dairy at present except goat milk, and no food high in Vit. K (because of my large blood clot). I am very prone to allergies, so I stay away from anything perfumed, even soap, shampoo and deodorant. In the last several months, I've been having a lot of hives on the inside of my elbows, sometimes on my upper back or on the inside of my knees. I can't quite figure out why unless I'm reacting to a multivitamin type of powder which I have taken now for three years. So I've cut that out for a few months, but still have some hives. Dr. Durie suggested that I take the Thalidomide one hour before dinner to see if that helped, and I think it does. But I still haven't figured it all out. Interesting!

As per Dr. Mehta's suggestion on this forum, I take B-6, B-12 & folic acid (for peripheral neuropathy), calcium (since mine tends to be low and I have these bumps all over my arms (calcium?), Allergy C powder (mixed in juice or water), pantothenic acid (B-5) and Benadryl for the hives, and garlic and zinc once it awhile. I do my best to drink 3 qts. of water a day, using a 64 oz. juice glass bottle which I fill twice in 24 hours. (Dr. Durie told me that milk and any other liquids don't count except some very "thin" ones (I suppose like herbal teas?). I always read the ingredients on the packages of prepared food so as to stay away from preservatives, dyes, etc.

Because of the break in my femur and the non-stabilized removal of bone in thoracic 7-10 for the surgery on my spine, I walk with a little limp. Hence, except in my house or for very short walks I use a walker, and in airports a wheelchair. I never go where there is a crowd indoors except when I go on the airplane to visit my daughters back east. (And after getting sick twice from the plane experience, I now wear a mask on the plane.) This means that for this former faithful churchgoer, I attend church by TV mainly. Friends know that if they have a cold, they should not come to visit me.

Quality of life? It all depends on what you like or need to do. With MM at age 70, I'm not particularly interested in roaming the world, especially since walking is a bit hard for me. I do love to see my four daughters (two close by and the others at a distance) and their families, totaling fourteen grandchildren. I am an (older) RN, an editor, a sometimes writer, and a history of missions teacher, specializing in little historical biographies to tie the story all together. I help my husband with sorting and filing and anything else he needs. I have three writing projects partly done, temporarily set aside because of the urgency of other things. I've always been a reader and especially enjoy historical fiction, especially some of the excellent Christian ones recently appearing. I also am fascinated with well-written history of the Cornelius Ryan (The Longest Day) or John Lukacs (Five Days in London) type.

I am amazed and grateful that so many people around the world are praying for me. I feel really bad only when my back hurts, which usually happens when I sit or stand too long without times out to lie down. The days after Aredia my back seems to hurt, but after the day of Dex it doesn't. Why? However, by the third, fourth or fifth day after the day of Dex I'm rather emotional and weepy. But then I have ten days of break from that (with back pain), then back again to the Aredia and Dex.

Dr. Durie tested me for the SV-40 virus, and, sure enough, I have it (probably from polio vaccine in the 60s). My long history of thyroid insufficiency has no doubt caused a lot of physical stress. Plus we lived and worked for almost a decade with Mayan Indians in Guatemala, fighting fleas continuously. Using insecticides there and in gardening here I'm sure were not good for me, though I have always tried to be very careful.

I have a great, loving husband, for which I am eternally grateful. After 48 years of marriage I still find him fascinating to talk with. He is what is called a "renaissance man," with a very wide range of interests. He is very creative, which makes some people crazy but which I love.

I'm very interested in vaccine reactions since our oldest grandchild was brain injured by the whooping cough vaccine as an infant, resulting in Asperger type autism. Our two oldest daughters are going this coming weekend (9/15-17) to a conference in San Diego on Autism. All four of my daughters are real researchers. It's a good thing since it's enough just to keep up with the things in the forum and other responsibilities to help my husband.

That's enough of a report for now. I've asked the Lord to give me fifteen years post my diagnosis four years ago. Generally speaking, I'm doing fine. But there are days...

Roberta Winter in Pasadena

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