Tag: Florida

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Myeloma Stories

Anna K. – Orlando, FL

December 2013, our family was gathered in the living room when my dad gave my brother and I the shocking news that he was diagnosed with Multiple Myeloma. Needless to say it was not the type of Christmas we were expecting.

What was unique about my dad’s situation is he didn’t have any of the symptoms related to MM, no bone problems, no kidney problems, they caught it when he went in for a check up due to a sinus problem he couldn’t seem to kick.

The next 6 months were a series of doctor’s appointments, chemotherapy treatments and then in the Summer of June 2014 he had his first Stem Cell Transplant.

He went back to the doctor for testing in October 2014 to find out of the Stem Cell Transplant had worked and if the cancer was in remission. He was getting good reports all around until 2 of the 5 tests came back with unsatisfactory results. We had to start the process again, more chemotherapy, new drugs, and another stem cell transplant coming up this summer.

It’s been a hard road to walk.  Thankfully we have a solid support system. This is something no one should have to endure alone. We have to take it one day at a time that’s all we can do.

–  Anna

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Myeloma Stories

Michele G. – Bradenton, FL

I went for a routine physical exam and my doctor told me that my blood work showed I was anemic. She did some additional tests and then referred me to a hematologist/oncologist. At this point, I still wasn’t worried. I thought there must be some benign explanation. So, off I went to the oncologist who did more tests.

All I can say is that I was shocked and horrified to discover that I had a blood cancer called multiple myeloma, for which there is no cure, at just age 57. I had faced cancer once before, having had breast cancer 8 years before. But that was easy to deal with compared to this. My breast cancer was found early and the prospects for my long term survival were fantastic.

The first few months of living with MM were very tough for me. I was depressed and scared about the survival statistics, and in my view, the prospect of being in a lot of pain and in general losing my life as I knew it. I would spend time with our grandkids and think about never seeing them grow up. I would travel and wonder if it was my last trip. At the same time I had these feelings, I was trying to be positive, though that was difficult to do.  Learning yoga and practicing meditation and guided imagery helped me cope and focus on inner healing. And, little did I know that I would be a survivor for many years and still going strong.

Here I am, 10 ½ years after my myeloma diagnosis, and I have a normal and wonderfully full life. I have hardly ever looked or felt like I had any problem. I have been lucky that my disease has always been just in the bone marrow and I have never had physical problems from it (other than some minor neuropathy from treatment drugs). I was on oral treatments for 8 years, and was able to play with my grandchildren (even welcome a new one to the world), play golf, and travel the world.

Five years ago, my husband and I decided to buy a home in Florida and now spend winters there and summers in WV. We now have a fantastic life in both places.

The only blip in my life was a decision to have an autologous stem cell transplant in 2012 because other treatments stopped working and my disease progressed for the third time. I had a very easy time with transplant and was back to walking a mile and a half a day and playing golf in just two months. Hair took longer to come back but that was a small price!

I have been overjoyed to see two of our grandkids graduate from high school and college, and another three will graduate high school this year. I promised myself when I was diagnosed that I would live to see all of them graduate from college and get married some day.

Since my health is so good now, we are going to China this year, and I am very excited about this trip. Now, I realize how much I have going for me, and have a positive outlook every day. Most important of all I have a wonderful, loving husband who talks about all of the years we are going to have together doing things we enjoy. Strong Support from family and friends, as well as my great medical team, have helped me immensely too.

I know I have been lucky in terms of the type of myeloma I have and that it has had such little impact on my life. However, I really believe that keeping positive throughout has helped so much. I even do visualization every day of ridding my body of myeloma cells and living a healthy and joyful life. So, I expect to fulfill my doctor’s predication that I will live to be an old lady (which he defined as in my 80s)!

– Michele

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Myeloma Stories

Martha W. – Bonita Springs, FL

We brought my husband Jerry to a doctor for back problems beginning in late 2009.  Jerry returned early from Florida to Indiana in February 2010 and saw Dr. John R. Alessi in Nashville, IN. He referred Jerry to a physical therapist who seemed to get him walking again.

The next year in Feb. 2011 Jerry had a consultation with Southwest Florida Neurological Assocs. in Ft. Myers where they performed a thoracic & lumbar MRI. The MRI revealed two crushed vertebrae at L-1 and T-11. Jerry also lost more than two inches in height.

In the spring of 2011, as a result of his Welcome-to-Medicare physical, Dr. Alessi referred Jerry to Dr. Michael Mak, a hematologist/oncologist at Columbus Regional Hospital (CRH) after noting a WBC-14.1; RBC-3.93; Hgb-13.5; Hct-39.6; MCV-100.8; MCH-34.3; MCHC-34. Dr. Mak diagnosed him with B-cell chronic lymphocytic leukemia (CLL) on 8/12/2011 after the excision of a groin lymph node at CRH, plus other tests. Treatment began with 4 weeks of Rituxan chemotherapy and then waiting 6 months for the next round of treatments.

We were in Florida from October 31, 2011-April 6, 2012, and Jerry could still swim copious laps and bicycle around the coop where we own a home in Bonita Springs, FL. He played Pinochle, bridge, cribbage, friendly competitive Bocce, swam, and joined the Old Spokes cyclists occasionally. He finished his latest children’s book last winter.

This year Dr. Mak changed the lymphoma treatments to every other month based on new research findings. This year Jerry’s first treatment with Rituxan after we came back to Indiana was April 10, 2012, and his last treatment with Rituxan was June 5, 2012. On Saturday, June 9, 2012, Jerry swam his usual 90 laps in the Brown Co. Y pool and then presented with a fever that afternoon.

On Monday afternoon Jerry visited Dr. Alessi who prescribed antibiotics (including Cefdinir and 800 mg. Ibuprofen) thinking it was the flu. The fever would barely let up and on June 19th, Dr. Mak admitted Jerry into CRH with failed liver and kidneys. Jerry was discharged June 25th and went home with a prescription for Prednisone which he took through June 29th. Fever presented itself again on Sunday morning July 1st around 12 noon. On July 3rd Dr. Mak requested a CBC and on the 9th he performed a bone marrow biopsy with more labs on July 13th and 23rd and on July 30 Dr. Mak told us of the multiple myeloma diagnosis.

He called Dr. Abonour at Jerry’s request and Jerry scheduled an appointment with him August 1. Then CRH Cancer Center scheduled the first Velcade/Dex treatment for August 2. Velcade/Dex was administered August 2, 6, 10, 13, 28, 31, September 4, 7, 18, 21, and 25 with only Dexamethasone on the 28th due to low platelets. After the second cycle, Dr. Mak referred Jerry to Dr. Samantha Schwartzkopf with symptoms of edema, rapid pulse, and breathlessness. An EKG, CatScan of chest, and stress cardiogram were performed.

On Monday, October 1 Dr. Mak performed another bone marrow biopsy. Jerry met with Dr. Abonour on Tuesday, October 2, and came back for a PetScan on October 5. The relentless fever has presented itself all along, doused by the Dexamethasone (2 days) but recurring as soon as the Dex wears off. We are controlling the fever with Acetaminophen and Ibuprofen, taking one of each about twice per 24 hours. Because of moderately severe back pain, Jerry also takes oxycodone to take as needed. He averages one 5 mg. tablet per day. His bleeding and thin-skinned arms are healing but the edema of his stomach and especially his lower extremities continues, currently abating on his left side. He wears Ted hose very often. CRH tested his legs by sonar for blood clots and found none. His neuropathy in his hands is lessening but he continues to have little feeling in the soles of his feet. He eats willingly and always has water or 100{662f9154478519430121bf9cce4d6b9f8ccf730187d765d88c6c0fa44a9f95f5} juice available.

Jerry loves a good movie at home or a good book. He goes with me to the Brown Co. YMCA, but usually has energy for very little activity except checking the web while I do my synchronized swimming laps. His vitamins, minerals and medications taken daily: 1 20 mg. omeprazole magnesium for his hiatal hernia 2-400 mg. acyclovir 1-1000 mg. Equate antacid calcium carbonate 1-400 mg. Vitamin E 2-500 mg. Vitamin C 2-99 mg. Potassium Gluconate 1-1000 IU Vitamin D3 2-400 mg. Magnesium with a bit of Zinc 1-Equate Complete Multivitamin Medication taken on the second day of the chemotherapy: Dexamethasone—20 mg. Medication for Osteoporosis: Zometa monthly Analgesics for fever and opiate for pain: Acetaminophen-500 mg. each Ibuprofen-200mg. each Oxycodone-5 mg. each Ailments since June 9, 2012 or hospitalization June 19-25, 2012: 1. Sacra-iliac pain radiating to the legs 2. Neuropathy with slight tingling in fingers but little feeling on the soles of Jerry’s feet 3. Trembling on the left side since the hospital stay (Jerry’s left-handed.) 4. Edema especially in legs and across stomach area which has abated 5. Bruised, bleeding arms (healing now), perhaps due to platelet shortage 6. Shortness of breath (of longer duration than June 9, 2012, and probably due to anemia) 7. Fever (started June 9, 2012) and is abating October 7-8, 2012! We’re waiting to see if it holds. 8. Jerry has new itching of the loose skin all around his feet as the edema subsides.

 — Martha W.

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Myeloma Stories

Jim C. – Gainesville, FL

8/10/11 changed my life forever. I am a physician who treats cancer. Having a pain in my neck for several months I attributed it to old age. Finally I asked a technologist friend to take a look with CT. What I saw sucked the life out of me and was the beginning of a new life.

Despite my diagnosis of multiple myeloma that had destroyed all but a rim of my 4th cervical vertebrae I was lucky in that I was diagnosed before a devastating collapse and possible death or paralysis. It has been an ordeal since. I have not responded to BMT, 2 of the “best” chemotherapies have destroyed my bone marrow and liver but I am still here working and treating patients with cancer and many other maladies.  I feel like I have been given a chance to give back and treat patients the way I would like to myself. Trust me it is an entirely different practice.

My ordeal has also taught me about the inefficiencies of the medical system. Suffice it to say there are many unanswered questions as well as hints and tricks that patients not the authorities are aware. Considering this I have attempted to unite all those with cancer in the hope that they can assist each other with these hints and tricks and also prepare and console those with similar histories. We all belong to the same club, like it or not. We can all help each other when the medical authorities fail.

I have begun a web site where all those with cancer of any variety can speak and question. I call it the OneIAM Club or one in a million. It is a portal to facilitate communication. It is off to a slow start because marketing is not my thing and also very difficult for the average citizen. I encourage you all to communicate with each other. I of course will do what I can to help. Please visit oneiam.com

— Jim C. 

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Myeloma Stories

Hardy J. – St. Augustine, FL

I was diagnosed with Multiple Myeloma in 2003. Fortunately, my doctor was able to diagnose me fairly quickly.

My first research on my newly acquired disease indicated a life expectancy of 2.5 years average. I sat in front of my computer numb. But I learned quickly that much that is on the web is outdated. The 2.5 year figure came from studies done in the early 1990s and published in 1998 – before Thalomid emerged as the first of the novel therapies.

LESSON 1: The web is extremely valuable but you have to be very careful with it. Read dates, cross check, talk to your doctor. Talk to IMF hotline. I went on Thal/Dex immediately. Results were astonishing. My urine protein dropped 97{662f9154478519430121bf9cce4d6b9f8ccf730187d765d88c6c0fa44a9f95f5}. CBC values came to normal, creatinine dropped from 3.8 to1.1. But this success may have created a problem. I needed to fly to Berlin for the International Whaling Commission. After returning home I developed a bi-lateral deep vein thrombosis – blood clots. I called the IMF and learned the DVTs apparently came from the combination of flying for ten hours and the detritus of the dead cells killed off by the meds.

LESSON 2: When things like this happen call the IMF and get their input. I then began filming a special for PBS on dolphins. First stop Norway to film killer whales under water. The dex helped a lot. I had huge energy and we made a great film entitled “The Dolphin Defender.” I’ve remained in a stable high quality partial remission for 11 years and moved toward relapse only twice – each time when taken off meds for 16 months.

LESSON 3: Do not take vacations from meds. For more info on this see lesson 2. Another lesson I’ve learned is that you must know as much as possible about the disease. As marvelous as many of them are, doctors are often stretched thin and have many patients. They can forget or lack the organization to do things like schedule bone scans or other tests. I had, on one occasion, to point out to my oncologist that his lack of action when I developed bone lesions was unacceptable. He wanted me to continue untreated after several lesions developed. I called Dr. Durie at IMF and he got me back on treatment which knocked out the lesions and got me back into remission.

I live today in St. Augustine Florida with my wife, Deborah, my dog Chou Chou, and my cat Gracie. I don’t have the energy I once had but I continue to do the work I love and have recently take up painting – at 70 years of age.

— Hardy J.

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Myeloma Stories

Ronald C. – Bradenton, FL

I was diagnosed with Multiple Myeloma 9 years ago. It was a major shock to me, and of course I went to the internet for information. Seeing that the average life spam with MM was 3 years, I was ready to die soon.

Then, my oncologist said he would make sure I was going to live for a while. He put me on Thalomide for a year, but my IGG was still high. Next was infusions, and some powerful ones at that. I had to have ice on my hands and feet while on chemo. I was losing weight, skin off my hands and feet, and told my doctor I would be better off dying than going through that. He then put me on and old fashion oral chemo, Alkeran, and it worked. My IGG would go down, then I would be taken off, and back up it went. I did this for about 4 years, and he became worried that I could have other problems being on and off. He then put me on Revlimid, a maintenance drug. My IGG went from close to 8000, down to 948 , and it has stayed there. (The cost is unbelievable, $9200 for 21 pills). I take one a day for 21 days, then off 7, then start the 21/7. It works.

9 years, feel great, no problems, and expect be around for many years. There are so many new medicines around that seem to give hope to everyone. I have not had to have a Stem Cell or Bone Marrow transplant. My doctor is an is a great doctor and he cares about how I am doing. Plus I have a great God, and prayers do work. Be encouraged. It looks like the future is looking better all the time.

— Ronald C. 

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Myeloma Stories

James B. – Panama City, FL

We know Multiple Myeloma cancer presently can not be cured, will take hold and get worse in time. I have Multiple Myeloma, Light Chain and Amyloidasis, stage three,had some symptoms 2009.

February 2010 during surgery, Catheter Arrhythmia Ablation the nurse informed me that I had fluid build-up in my legs that I should report to my health provider. On a return trip driving from Toledo, Ohio, over 1,000 miles, May or June 2010, I had to stop every 200 miles and rest, normally could make the whole trip with no more than one stop with a short rest. Knowing something was wrong I contacted my health provider, she found a Thyroid problem, started Synthroid and Lasix, lost twenty pounds of fluid.

October, the fluid build ­up started once again. More tests, determined a kidney problem, my provider scheduled an appointment with a Nephrology doctor October 27, 2010, she thought it may be Kidney cancer. More tests, indicated Chronic Kidney Biopsy Stage 3, Proteinuria, Hypertension. Dec 21, 2010 scheduled to see a Hematology Oncology doctor.

12/29/10 after more tests, Light Chain, Multiple Myeloma and Amyloidosis, stage 3, started Revlimid and Dexamrnthasone. Completed Bone Marrow Biopsy and whole skeletal survey. Affected areas, Kidney, Hi Calcium and Blood. While bone marrow is the area of cancer, the first report indicates I still have strong bones. Research indicates survival rate was about three years at this time, Expected cancer started early 2009.

My Oncology doctor scheduled me for a Life Port and changed the treatment to Chemo infusion. Later the treatment was changed to Revlimid, May 2011, which came with major side effects, Revlimid was stopped November 2011, my Oncology Doctor scheduled me for a complete blood transfusion the last week 2011, which did not agree with me.

Returned home, went in to a coma the next day and ended back in the hospital. After three days in the hospital, the doctors gave me no chance and gave up on me, Barbara my wife was called to the hospital, when she arrived, there was a number of doctors and nurses in my room, she spoke to me and for unknown reason, I came out of the coma. Had no body functions, could not get out of bed, bath, walk, nothing except move my hands and talk a little, was on a breathing machine, found out later my lungs were damaged during the blood transfusion or the coma. Two weeks in the hospital, was moved to HealthSouth for three weeks, started walking a little using a walker, returned home under the care of home nurse for another four weeks.

When I got stronger, my Oncology doctor started another treatment, May 2012, Velcade injections weekly. Still had side effects, minor compared to when I was on Revlimid. October 2013 my Oncology Doctor was thinking of taking me off Velcade, he reported I have been stable for the past six months.

I am the best I have been for three years, still have side effects, breathing problems, very weak, tired all the time, can sleep for nine hours and feel like going back to bed.

Get by walking using a cane due to weak legs and balance. My normal blood pressure is low, good when 110, can be problems when it goes below the mid 90’s, has noted to drop to 83. When it drops my pulse increases from a normal 55 ppm to 115 ppm. While this may not be high for others, I am use to 55 ppm. When I was on Revlimid, my pulse would increase when ever I laid down or got up from bed, low BP and high pulse would last 10 minutes. Note I would be dizzy at this time. I also fell five times..

My blood pressure would drop and pulse would increase after getting up and last much longer, I would have to change my plans and stay around home. November I left home, feeling so bad I returned home. Nov 5, 2013 I went to pick up a pair of glasses. My pulse was 95 when we left. After I purchased the glasses, got up from a low chair and passed out, lucky I fell back on the chair, or some one caught me and guided me to fall in the chair. Had to rest for 15 minutes and use a store basket to walk, use a cane and always use a basket when in a store. This is the second time this happened in November. Note when I fell five times in 2010 or ­2011, two or three times I was dizzy, or was looking up and passed out a couple of the times. During all the times during the falls, dizzy or a drop in blood pressure and was taking Lasix. I normally take two lasix before bed, if I am increasing fluid build up I take three lasix.

During November I took 3 lasix three different times, including the two days noted, I now three lasix in the night two lasix two hours before bed, take another Lazix before going to bed, results are good, no problems and have a better control on the fluid build up. Lasix works better at night and I have no problem going back to sleep.

January 2014, my oncology doctor suggested to think about getting off Velcade now that I have been stable for approximate nine months. Being in the U.S. Air Force for over 24 years, I knew I had to check everything before volunteering. This was the time information was release, injections and infusions were in the Medicare cuts under the ObamaCare rules. Our local newspaper ran an article on possible Medicare cuts which included infusions and injection. I followed with my own article to the paper, Congress and the President.

I have also been blessed with an Oncology Nurse, who should receive the credit for me being a normal person again. I am the best I have been in many years. Sarah knows her patients needs, how to comfort them, trusted by all her patients. All her patients seem to have a positive effort in dealing with cancer, a medical professional who reaches out to the caregiver, stands out for her caring compassion, outstanding knowledge, medical skill and a friend who cares about her work.

I discussed with Sarah on being removed from Velcade, Sarah reminded me I had over 3 1/2 real bad years before starting Velcade, now I am once again a normal person, I might want to delay in stopping the treatment. She also said once removed I should know there is no guarantee Velcade would work as good as it has for me after being stopped, If you volunteer to be removed, this may work against me if Velcade was to be limited by the Government. She told me to make sure I talked it over with my Doctor.

I thought any cuts to Medicare would be after the this years election, I decided to stay with Velcade. A good decision as my doctor advised me November 2013, Medicare was cutting from four Velcade injections per cycle to three Velcade injections per cycle. As of March 2014 I am a 79 year old male holding my own, still stable, and still receiving Velcade injections by my nurse, Sarah.

In Panama City received another blessing, Sarah a MM patient and Sheila a MM caregiver started an International Myeloma Foundation Support group with monthly meetings the first Saturday at a local Hospital. We now have over fifteen members. Our priority to reach out and contact as many Multiple Myeloma Patients, caregivers, friends and family members as possible. My Nurse Sarah attends every meeting and contacts speakers. Our plans include a radio interview plus a local TV story with my oncology doctor explaining Multiple Myeloma, Sarah and Sheila will explain the support group, my job is to contact the local NBC TV station where I worked for 24 years.

I also wish to include my wife, Barbara, who has stuck with me the total time, visited every day in the Hospital and my time in HealthSouth. Completely in her care for 2 years, during the time I was recovering from the coma. She is always with me, during all doctor’s visits, where ever I go, still protecting me in case my legs were to give out. I now have special diets. I believe the cancer can be worse for the Caregiver than it is for the patient in many different ways, and remember she may not show it outside, but is always with her on the inside.

This is my story, over five years Multiple Myeloma, Light Chain and Amyloidosis. My nurse, Sarah has also been nominated for CURE’s 2014 Extraordinary Healer. Hope my story may help new cancer patients and caregivers in understanding what can be a positive side even for Multiple Myeloma cancer.

— James B.

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Myeloma Stories

Sarah D. – Panama City, FL

My name is Sarah Christina Davis and my husband Mike and I are leaders of the Northwest Florida MM support group in Panama City, FL.

I’m so grateful to God for everything and I’m very blessed to be here sharing my story with you.

We were living in Charlotte NC when around Nov 20th 2009 I started to have pain in my left shoulder and gradually it moved to the other side of my body. I thought I just had sore muscles since I was helping my husband do some work around our house few weeks earlier. But the pain did not go away and it got worse. I couldn’t move my upper body and my primary care doctor thought I might have acid reflux.

I went to see a Gastroenterologist and had an endoscopy that showed no sign of acid reflux. He also ordered a bone density, bone scan, MRI and CT scan. Those tests showed that I might have Multiple Myeloma. I asked him “what is that?” He told us it was cancer. We did not even know what MM was until the first time I saw the Oncologist referred by my medical insurance on February 10, 2010. By then, I had so much bone pain all over my body that I couldn’t even get out of bed alone and could hardly walk.

Finally on February 23rd the Oncologist confirmed that I had MM stage 3 after a skeletal survey and bone biopsy. The Skeletal Survey X-rays showed that my bones had a lot of lesions and looked like a road map. That explains why I was experiencing so much pain and fatigue over the last two months. Immediately he sent me have two pints of blood transfused into my body because I had very low red blood account. He explained to us that Chemo treatments would last about 6 months. We both cried all the way home and couldn’t believe the news that I had Multiple Myeloma cancer.

I thought to myself “my life is over and this is how I am going to die at age 55”. I felt a fear of the unknown sweep over me. Because of this strange cancer called Multiple Myeloma, I wondered how much suffering I would have to endure before I died? It was overwhelming not knowing what to expect and I prayed that somehow I would make it through this without losing my mind. No one in my family ever had cancer and I was the healthiest one, although I was anemic most of my life.

Finally on March 1st 2010 I started Chemo with Velcade, Revlimid and Dex twice a week and Zometa once every three weeks. It was not as bad as I thought it would be. I thought they were going to hook me up to a big machine and do a lot of radiation on my body. I was surprised that it was not painful when the triage nurse gave me Chemo intravenously in my arm. But after about 6 weeks of chemo the doctor had to put a port in my upper chest because both my arms were black, purple and blue from the Chemo IV needles. My husband was working full time so I was home alone during the day. It gave me a lot of time to think about my misery and I cried a lot and felt sorry for myself. I did not know how long I was going to have to suffer like this. I was afraid that this was going to be an even longer road if I didn’t snap out of the self pity and crying. The last thing I needed was depression.

So I had long talk with myself and God and I decided to accept the situation and be grateful for it. I was born very premature and almost died at birth but God gave me 55 years so I should thank him for everything and be positive and grateful instead of getting depressed and upset. So what if I’m dying. No one lives forever on this earth. From that day on I kept thanking God for the cancer and praying that my suffering would not be in vain. Somehow this will be a good lesson for me. I told God that His will be done and whatever he decides is Ok with me. I ate a healthy diet of a lot of vegetables, started gentle exercises and planted flowers when I was not in pain. I ended up in the ER three times within six months during the Chemo treatments because of so much bone pain. But I kept a positive and grateful attitude for the whole time.

Thankfully after two weeks of chemo my protein level went down to 136 from 750. So the chemo was working well although Chemo treatment made me feel very tired, dizzy, nauseated, constipated and suffered from insomnia and painful neuropathy in my legs, feet and hands. I had to constantly rub them. It felt like a thousand needles of fire were shooting into my nervous system giving me constant cramps and pain. It was unbearable but I had to go through it until the chemo is done. Chemo was killing the Multiple Myeloma cancer cells but it would not leave me without a fight because it got into my sternum so strongly that even the slightest movement gave me extreme pain. So I had to move very slowly and carefully. One day I ended up in the ER and they gave me Morphine for the pain. The pain pill did not work most of time and just made me very dizzy and I felt weird. I had to sleep sitting up until the pain in my sternum gradually decreased which took about six weeks. I did not sleep well at all during that time.

After the the cancer went into my rib cage it gave me shooting pains so badly that all I could was cry. We called my doctor (it was a Saturday evening) and thankfully the standby doctor called in a prescription for stronger pain medicine that saved me from going to the ER. That medicine made me very dizzy and I felt weird as always but it helped me to sleep.

After six months of chemo (1st of March thru the end of August 2010) at the end of November 2010 my doctor told me the Good news that I was in remission. I did not have a stem cell transplant although the doctor suggested it in the beginning, but I choose not to have it. Now I’m doing well on a maintenance regimen of 2.5mg Revlimid. It has been four years since I was diagnosed with MM and I’m still in remission and doing good so far.

Every day I give thanks to God, My savior Christ Jesus and the Holy Spirit. He heard my prayers and gave me strength and wisdom when I needed it and led me to where I am by providing me with good doctors, nurses and medicines and everyone who prayed for me. God bless them all.

Lastly, I thank God for my wonderful husband who was there for me. We sold the house in Charlotte NC when we moved to Panama City, FL in 2012.

We are now leaders of a MM support group in Panama City, FL that we started in 2013 with help of IMF, especially their regional representative Anne Pacowta in Jacksonville, FL. When we started the group we had three members. Since then we’ve grown to 14 at our last meeting. We’re getting the word out about our group through local newspaper ads and we were recently interviewed for a radio spot with four local stations. They will start airing on March 16th and will continue as they are able to give us the air time. We’re also planning to get our message on local TV stations too. Let’s keep working together to beat this disease for good. We’re here to help each other. We appreciate you very much. God bless you all.

— Sarah D.

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Myeloma Stories

John B. – The Villages, FL

I was diagnosed in March of 2013. However, I believe that it had been coming on for for several vears.  before I was diagnosed. I was having balance and walking problems. I just did not feel right and knew that something was wrong. Then in November of 2012, I had severe back pain. Found out from My Family Doctor that I had a Fractured vertebrae (3 of them). All repaired by invasive procedure.  I thought that once the vertebrae fractures were repaired that I would be free of pain. Not so. I continually have what is called bone pain.and it also is worse in cold weather. I have to be careful with putting pressure on my ribs, because they fracture very  easily. I am presently on revlimid (10mg) one daily and dexamethasone (on Monday) and I get an IV of Zometa (bone hardener every 28 days). MM is treatable, but not curable. Overall, I am thankful because I know that there other patients at The Florida Cancer Center that are lots worse off than I am. We pray every day and thank the lord for what I have and thank him for being so kind and loving and caring.We know that he is there.

— John B.

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Myeloma Stories

Barbara K. – The Villages, FL

I fractured my back in 2005.  After waiting 3 months wearing a brace it was no better.  The doctors decided to do surgery.  After doing my pre-op blood work it came back showing I was 1/2 empty of blood.  I didn’t knows it but my kidneys had shut down too.  After a couple blood transfusions my kidneys started working again, I was lucky!   The doctors did a biopsy and found Multiple Myeloma.  I started chemo and after 7 months I was ready for my stem cell transplant.  It was successful and I was clean for 6 1/4 years.  It became active again and now I’m on maintenance Revlimid.  Doing well on for almost 2 years now.  Stay positive!  It’s half the battle!

— Barbara K.