Halifax, NS, Canada; email@example.com
1955 / Class of '99 / MM with POEMS syndrome / Updated: 6/00
I was born and raised in a small coal-mining town in Cape Breton. I am 44 years old and happily married to a very loving and supportive man by the name of Kevin Murphy. I have two children—Sarah (age12) and Bruce (age 8)—and a stepdaughter, Cassandra (age 17) from Kevin's first marriage. We live in Dartmouth, Nova Scotia, Canada. I receive my medical treatment at the QE11 Health Sciences Centre (Dalhousie Medical School) in Halifax, which is the capital of N.S. Halifax is a beautiful and vibrant port city. Come join us for the Tall Ships celebration in July. You can't beat Maritime hospitality!
I am a full time homemaker and have been since 1987. Before that I worked as a dental assistant, first, in an office in Vancouver, then at Dalhousie Dental School for 5 years, and finally in two different private practices specializing in periodontics, prostodontics and general dentistry. I am a recovering alcoholic and have been sober since March/1996. I smoked for 12 years and quit when I was 30. I started running to ease the smoking withdrawal and continued to run until 2˝ years ago. My goal is to eventually run again.
My problems all started in December 1995 after shoveling heavy/wet snow. I had positional vertigo for 10 days and a very sore shoulder. In January 1996, I went to the doctor because my sore shoulder was interfering with my running. I was training for the spring and summer road-racing seasons and was putting in about 40 miles a week. I was told I had bursitis. I saw a sports medicine doctor who said I had shoulder /girdle dysfunction from possible nerve compression so I was further referred for physiotherapy. I had atrophy of the trapezius muscle and sternomastoid.
In May 1996 I had another episode of vertigo which lasted one week. In July 1996 I saw a neurologist who noted total atrophy of the trapezius and a weak sternomastoid and atrophy of the left side of my tongue. I had been noticing that my speech was slurring after long runs. At this point, I knew something was very wrong but he would not order a CAT scan or MRI, only a EMG and not until October.
I continued to put in high mileage—40 to 50 miles a week—and raced every other weekend all summer. By the fall of 1996, I started to notice a slight problem with my breathing when I was running. I ended up dropping out of some short distance races. I could run easy for 2 hours but the 5km races were killing me. My doctor said I had exercise induced asthma and put me on a puffer.
After one week of using the puffer (without improvement) I insisted on having a CAT scan. The neurologist reluctantly agreed to order it up and made me feel like a nut case. He called me on Halloween day at 4:00 in the afternoon and told me it looked like I had a brain tumor. Worst day of my life! Needless to say, getting my kids ready for trick-or-treating was not an easy task.
A few days later I saw an otolaryngologist, as they thought it was nasopharyngeal carcinoma. He immediately ruled that out and ordered another CAT scan with contrast. That took two weeks to have done. Now we were looking at some type of tumor in the skull base—jugular foramen to be exact. I continued to run because other than some weird neurological symptoms and my droopy shoulder, I felt fine. Of course I was an emotional mess!!
At this point I became known as a difficult patient because I was being too aggressive. The ENT doc refused to see me any more because I complained to the Department of Health because he would not return my calls for 2 weeks. It was November and I still did not have any real diagnosis.
I finally had an MRI (5 weeks after the first CAT scan), which showed the tumor to be a schwannoma (benign) of the jugular foramen. I then saw a neurosurgeon who felt a biopsy was too invasive because of the location and could possibly leave me with many deficits. So he took my MRI to Toronto to see if they would do Steriotactic Radiosurgery (6 weeks of it) without a biopsy. They refused to treat me without a biopsy. I did some research and found out about Gamma Knife radiosurgery, which is not available in Canada.
After four months of battling it out, I was referred to Pittsburgh for Gamma Knife. They were convinced that it was benign and on May 7 /97, I had my treatment which lasted not even 20 minutes. I stayed in the hospital overnight and was running four days later. Gamma Knife is hundreds of rays of highly focused cobalt 60, which leaves no side effects (except a sore head for a few days from the guiding frame that was screwed into my skull.) I was told not to expect regression of the tumor for 6 months to a year, since schwannomas shrink slowly.
Two weeks after treatment the atrophy was gone on my tongue and my atrophied muscles were recovering. I had an MRI two months after treatment just to make sure that it had stopped growing and it was caving in on itself. What a surprise! The Pittsburgh boys just thought they were getting better at their job. My neurosurgeon was glad to have me off his back and I was just happy to be getting rid of that bloody thing in my head. In retrospect—could it have been a plasmacytoma? We'll never know.
I continued racing a little bit during the summer and fall of 97 but still felt that something was not right. I was developing tingling in my hands and feet when I ran and I became very cold sensitive. My hands and feet were always purple and cold and my breathing was not up to par when running. Once again, the doctors blew me off.
In December 1997, during a ten mile run, I experienced severe pain on my spine radiating around my left rib cage, which sent me to the emergency department. They told me it was a" virus". They did a chest x-ray but no spine films, which I had suggested. Two days later I attempted to run again and ended up at emergency (again). Once again, they did chest x-rays, but no spine films. Maybe I had a clot in my lung? Wrong. Finally, my doctor said I had costal chondritis (inflammation of the cartilage between the ribs) and said yeah, it can be quite sore: take ibuprofen. Well, I was in total agony and spent most of that Christmas in bed.
In January 1998, I went back to my physiotherapist as I thought maybe it was a muscle imbalance because of the muscles coming back after my Gamma Knife treatment. He noticed my purple hands, feet and face and said he would talk to a rheumatology friend about my symptoms. It takes 6 to 8 months to see some specialists here. Our health care system is another story. It was suggested by this rheumatologist that maybe I had hyperviscosity syndrome caused by croglobulins, and that I should see a hematologist.
Also in January, I started seeing a hematologist. The pain on my spine/ribs had settled down somewhat so not much attention was paid to that. I had enlarged (cervical) lymph nodes and elevated platelets. Other than that, blood work was normal.
In March, I saw a rheumatologist, to rule out any rheumatological disorders and he had some spine films ordered. Around the same time my hematologist ordered some cat scans (neck, chest and stomach) because of the lymphadenopathy. Lo and behold, the spine film and the cat scans revealed, along with many more lymph nodes, a mass at T5. I had an open biopsy done in May 1998 and was told it was a plasmacytoma and that I had Multiple Myeloma. I thought I was toast! Then I was told that I "may" develop MM sometime down the road and the only treatment I required was radiation to the T5 area. At this point the peripheral neuropathy was so bad that I had to pull myself up the stairs. The hematologists said it was from cord compression but the neurosurgeon said there was no compression of the spinal cord. There was no explanation for the elevated platelets or the lymphadenopathy.
After the radiation treatments I slowly improved and by the fall of '98 and the winter of '99 I was enjoying fairly good health. The PN improved but did not go away totally. I did some research on PN and started using Neurontin (Gabapentin), which is an antiepileptic, and it masked the PN enough so that I could at least walk. I was also taking clodronate,1600 mg./day. I was well enough to take a trip to Italy in May, but by July, I started getting ill again. By October, my spleen and liver were enlarged, the neuropathy was past my knees and was feeling it in my tongue and hands, my breathing was a mess and I was retaining fluid. I started getting migraines but nothing showed up in the bloodwork that was done here, so I felt once again, no real answers.
During the middle of October 1999, Dr. Robert Kyle came to Dalhousie Medical School in Halifax to give a lecture to the hematologists-oncologists. My hematologist presented my case and Dr. Kyle suggested that maybe I had POEMS Syndrome. POEMS stands for Polyneuropath, Organomegaly, Endocrine Monoclonal protein and Skin changes. It is a very rare variant of multiple Myeloma. Enough screwing around-I asked to be referred to the Mayo Clinic in Rochester for an evaluation with the "experts" as it has the largest experience in the world with this syndrome.
I spent 5 days at the Mayo under the care of Dr. Angela Dispenzieri who was wonderful, as are all the docs at the Mayo Clinic. Listening to patients and working as a team—now there's a novel approach. I dragged 20 pounds of x-rays, cat scans and MRI's with me, along with bone marrow and lymph node biopsy slides. I had consults (along with hematology) with Neurology, Endocrinology, Ophthalmology and Pulmonary Care. I was diagnosed with 'classic' POEMS Syndrome. At that time I had severe pulmonary hypertension with only 50% lung capacity, papilladema, PN and a lot of endocrine abnormalities. I had developed a noticeable tan, peach fuzz like hair on my face along with some blotches, longer and coarser hair on my arms and legs and no menstruation.
My laboratory results are as follows; C-Reactice Protein-3.7, B-2 Micro-globulin-5.50, Total Protein-111, K and l light chains detected, No Monoclonal Protein, Less than 10% Plasma Cells in Bone Marrow, Platelets elevated at 593, Alkaline Phosphatase-326, Creatinine-1.4, Sensitive TSH 17.7, Total Thyroxin 4.1, Prolactin-49.7, Corticotrophin-130 and Parathyroid. My official diagnosis, finally, is OSTEOSCLEROTIC MYELOMA with POEMS SYNDROME - Nov.1999. It was recommended that I have a PBSCT as soon as possible.
As crappy as I felt I was so relieved to find out what was exactly wrong with me and get some treatment. Before I left the Mayo Clinic, Dr. Dispenzieri was nice enough to bring Dr. Kyle around so I could meet him and thank him. He is a lovely and brilliant man and I will forever be indebted to him. I returned to Nova Scotia and started on pulsed Dex-40mg. a day (4 days on - 4 days off) for almost two months. Although it was rough at first, I did adjust to the Dex and by Jan.2000 I was feeling pretty darn good. Vincristine was not recommended because of the PN and I refused the Adriamycin because of the pulmonary hypertension. For the stem cell collection, we only used Nupogen (no cyclophosphomide), and in two days we collected enough cells for two transplants.
I went into hospital on February 25, 2000, and had Melphalan (first time for chemo) and four days of TBI. I received my stem cells on March 2 and was released from hospital on day 14 of the transplant. The transplant was a piece of cake with the exception of two days of diarrhea, a "little" bit of vomiting and a wicked sore throat, which loads of morphine looked after for a few days. I left the hospital eating three meals a day and my counts recovering very quickly. They were completely recovered in two weeks.
At this time I am enjoying excellent health and I appear to be in remission. The only medication I am taking is MS Contin 15mg. twice a day, which I am in the process of weaning myself off of. I'm down to 7-1/2 mg. and have added Celebrex. I started with 200mg. but am taking 400mg now to hopefully cash in on the possible anti-angiogenesis benefits that I have been reading about. At 3-1/2 months post transplant I don't require the afternoon naps anymore and I'm hoping to start working on a fitness program sometime soon. My joints are still stiff and I get some pain on my spine, but I'm hoping to feel better once the Celebrex builds up in my system. I've only been taking it 5 days now. The neuropathy is very mild (only in my feet-mostly left one) and I have been working with an acupuncturist for 6 months now. I used chinese herbs during the transplant and continue to use them now. I am taking an herbal combination now called Marrow Plus. I used many complimentary therapies and really believe in the mind /body connection.
I have a very loving and supportive family and many caring and helpful friends who helped get us through the hard times. I try to help others who have been diagnosed with Cancer (any kind) and reinforce a positive attitude. Don't let the fear wear you down. Knowledge is Power, especially when you are at the mercy of a failing health care system. So, become an expert on your disease. Myeloma can be difficult to treat, so don't be afraid to get a second opinion and if you can, see an MM expert. I have had to take charge of my health and treatment and continue to keep the docs on their toes. I have found a wonderful camaraderie amongst my fellow warriors on the Internet and recommend it to others who are interested. There is some exciting research going on out there which should give us all hope for the day when they find a way to cure or totally manage this disease.
Thank you for reading "My Story". I know it is long but maybe something in there will help someone else. POEMS SYNDROME is very rare, so pay attention to some of the symptoms.
Stay Positive and Best Wishes To You All!Ronnie MacIntyre
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