Author: MyelomaActionMonth

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Myeloma Stories

Jerry H. – Alexandria, MN

This past summer I noticed much more afternoon fatigue than normal. Upon encouragement by my wife, I saw my doctor who did a blood test and discovered elevated protrien. He referred me to local oncologist who performed a bone marrow extraction which showed MM.

I am in very early stage so they put me on a pill and steroid. My  system rejected it so I started again with Revlimid and  Dex. Just started so will see how it goes.

Moral of story even though I’m 67,  pay attention to changes in your system. Don’t always assume its an aging thing.

I thank my wife for encouraging me to see the doctor and an attentive one at that!!!

– Jerry

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Myeloma Stories

Tammy F. – Rotterdam, Netherlands

Receiving a diagnosis of multiple myeloma is daunting, and even more so when you’re an expat living abroad. But I was lucky – there’s a hospital with one of Europe’s leaders in Multiple Myeloma in my town, and I was able to get into a trial with carfilzomib, dexamethason and thalidomide to treat newly diagnosed patients.

After a year of treatment – 4 months of chemo, autologous stem cell transplant, and 4 more months of consolidation chemo – I am in stringent complete remission and life has returned to normal.

I finished treatment a year ago and since then, I’ve traveled to Seoul for work, to Botswana on safari, walked 112 km of the Camino de Santiago in Spain, hiked high in the Swiss Alps, and last week I was skiing in the Austrian Alps. I was able to work on a reduced schedule all through my year of treatment, with the exception of a month after transplant.

I was lucky in that my myeloma was found relatively early (Stage 2) and responded quickly and well to treatment. I urge anyone with symptoms or fears to be tested – if you have it, the sooner you start treatment, the better.

This beast CAN be tamed, or at least lived with. And if you are diagnosed, get yourself into as good condition as you can – it will help you in your fight against it. Eat a healthy diet rich in fresh fruits and veggies, drink LOTS of water, at least 2 liters every single day, get 8 hours of sleep per night. And – at least while in chemo – forgo alcohol (not even a glass of champagne on New Years Eve). I had a year of some interruptions, but now my life has returned to normal and I can often forget that I am living with this disease.

– Tammy

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Myeloma Stories

Ulrika H. – Bollebygd, Sweden

Tomorrow I’m going home from hospital after 17 days. I’ve gone through a stem cell transplant. I first got sick in August and have been treated with Velcade. I have received the best care from my doctor, the nurses, the counselor and I’m very happy I didn’t have to stand in line for treatment in August.

The diagnosis of Myeloma came as a shock. How could I, a 45-year-old woman, have cancer? It was a shock to all of us, my husband, our son, my parents and friends. There has been a lot of crying. The shock has passed, but it still feels unreal. I have a disease that is going to stay with me for the rest of my life, unless they find a cure.

Tomorrow I’m getting back to life. My goal is to get back to work in August. I’m a teacher, which is the best job in the world. I miss my colleagues, my students and a regular everyday life. Being sick makes you appreciate the simple things in life. Best of luck to all of you out there.

– Ulrika

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Myeloma Stories

Cindy C. – Lawrenceville, NJ

Life is not about the steps you’ve taken, or the places you’ve been, it’s about the footprints you leave behind. My name is Cindy AKA @MyelomaTeacher and I hope the digital footprints I leave behind help a future generation of myeloma warriors become empowered patients.

I have grown tremendously as a person since my myeloma diagnosis. Prior to learning I had myeloma I was an uneducated/uninvolved patient who blindly followed doctor’s orders. I didn’t ask questions, research my conditions or seek second opinions. Today I am an empowered partner and an active participant in my healthcare. I attribute social media and the IMF as being major impetuses for my metamorphosis. I learned through online patient communities like SmartPatients, patient blogs, Facebook, teleconferences/webinars such as the IMF’s Living Well with Myeloma Series and Twitter. I learned by attending Patient and Family Seminars, Support Group Leader Summits and ASH conferences.

I was diagnosed with myeloma after being misdiagnosed with degenerative disc disease for two years. My orthopedic doctor prescribed pain medications and countless sessions of physical therapy to help with the debilitating pain I was experiencing, but I wasn’t getting better. I was getting worse. I remember thinking “Maybe my doctor should take an x-ray” (which he never did in the two years I was seeing him), but I didn’t speak up. I didn’t trust my instincts. By the time I was diagnosed with myeloma my bones were a mess. I had several compression fractures, suffered from osteoporosis and I lost over 3 inches in height. I started treatment immediately (without asking questions), but unfortunately I stopped responding to induction therapy after 4 cycles. I proceeded to have a stem cell transplant upon my myeloma specialist’s recommendation. My transplant failed to put me into remission and 100 days post-transplant I was back in treatment.

My myeloma specialist suggested 3 options. He gave me his recommendation, but ultimately it was going to be my decision as to which path I would take. At that moment I knew I was going to be partners in my care and in order to make informed decisions I needed to educate myself and learn how to make my voice heard. I am now in l remission on continuous maintenance therapy and very active in the myeloma community.

Being an educator my entire life it is only fitting that I use my passion for teaching to share what I have learned and continue to learn about the importance of patient empowerment, available resources, advocacy and research to a new group of students –patients, caregivers, doctors and anyone who will listen. My classroom is the internet.

@MyelomaTeacher is my personal Twitter handle http://www.twitter.com/myelomateacher. I have over 2600 followers and Tweet daily.  I also occasionally tweet from the International Myeloma Foundation’s @IMFAdvocacy twitter account http://www.twitter.com/imfadvocacy. I’m the co-founder of #MMSM TweetChat and manage @MMSMChats Twitter account. I am an administrator of the Philadelphia Multiple Myeloma Networking Group’s Facebook page http://www.Facebook.com/PMMNG and website http://www.philadelphia.myeloma.org. Using Pinterest I created a series of Myeloma specific boards. http://www.pinterest.com/cynthiachmielew/ I am also a regular panelist on Myeloma CurePanel a talk show that features medical experts in conversation with a panel of patients about treatments under development. http://www.blogtalkradio.com/search?q=myeloma I hope that listening to my story others who are like I was , a bystander in my healthcare, realize the importance of becoming an empowered partner. resesrch shows that empowered patients have the best outcomes that was motivation enough for me.  As the IMF says- Knowledge is Power

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Myeloma Stories

Josef H. – Plzen, Czech Republic

A large part of my working life I worked as a boss of the car service. I had common life problems like everyone else. At work I often spent ten hours every day. I had to ensure my customers be satisfied with all the repairs made are first-rate and on time. My work also became my hobby. I loved cars and bikes. In the past. I worked as a motor- bike mechanic at the motocross racing in the whole Czech Republic. I cooperated with a very successful speedway driver at the time. Unfortunately he died at a motocross racing event abroad.

Time to time I had a back pain at that time, but always after a short treatment it passed away and all seemed to be alright. I always thought that it was from the cold from car repairs and races.

My big hobby is cycling, I gave my time to mountain biking together with a bunch of friends in my free time. Time to time I attended some bike races. Biking was my hobby when I was young. At first I rode on a road bike (a mountain bike was not available at that time), later I bought a mountain bike. The bike races were not separated into the age categories and I was always placed in the middle of the pit lane.

I borrowed a motocross bike in the spring of 2006 to remember my young time and I slightly felt nothing serious from my point of view. When I was lifting the motorbike I felt a pain my back. I did not pay any attention to it because it was not unusual for me. The pain increased during the summer. I visited the Orthopedic Department. However, the pain did not step back therefore I visited other two physiotherapists. However, they did not help me as well. I had such a back pain that I could not ride a bicycle at all.

My friends advised me what else to try. One of them told his son about my problems and this man worked as a doctor in The University Hospital in Prague. He arranged me an examination of MRI (Magnetic Resonance Imaging) at the end of summer. The examination was done at the weekend. On Monday next week the doctor phoned me and asked me if I had been at work and how I had felt. He recommended me to go home. He said that it would be best if somebody took me home. His other information was that MRI examination discovered a problem with my spine and they would wait for me in the Neurology Department in The University Hospital. And in the end he recommended me to travel to Prague. I was taken a back of course and my colleague took me to Prague.

After the formalities at Department Reception I went for on examination in Neurology. I was told very firmly that my vertebra had been totally ruined and my spine was kept only with muscles the so-called “on nature.”  Furthermore, the doctor said to me that although I was in the hospital some careless movement could destroy my spinal cord. Immediately I also learned all possible consequences of this situation. I was admitted and all the time the doctor was coming to my bed and with a hammer knocking knees or tickled me on the foot. I had to move toes. The doctors were leaving and coiling their heads. I asked them why and the answer was: you did not see your MR images.

This situation really scared me. I was very unhappy and I imagined a lot of bad future situations including the idea that I would to be depended on a wheelchair. I was operated immediately at the same week. I remembered I moved foot fingers after my waking up, which confirmed the success of the operation to me. I was told about my histological results, it was multiple myeloma (MM).

Although I was satisfied with the doctors and the staff I decided to start treatment of disease in University Hospital in Plzen. I came to the Oncological Department with my MR images. There was a very pleasant and humorous conversation with a doctor who said to me that it was in fact “children disease in Oncology”. He used this comparison as an example of very successful result in the treatment, because I knew him as my customer and he knew my cycling activities.

The same day the doctor sent me to the Hematological Department and a Multiple Myeloma specialist explained all to me. I received a brochure about the treatment of Multiple Myeloma and in two days I took the first dose of chemotherapy. My treatment was carried out in accordance with the brochure, including the autologous stem cell transplantation.

I missed my work that was why I still worked and walked with my wife between chemotherapy cycles. I obtained a full disability pension. After the transplantation I spend time at the cottage. I slowly began to regain my strength and I was looking for a new full-suspension bike. The friends of our cycling team supported me a lot and helped to buy it. And in two month I started to go by bike again. I started really slowly indeed because the power was missing. Therefore I put performable goals to myself. “Today I come to forest. Tomorrow I will try to come in the racks” and so until the time when I got back tissue strength and again I could slowly rode away.

In this time I have had a complete remission for a few years. I am not trying to think of the disease. I´m able to rode a lot of kilometers by bike and per year I ride 2 500 – 3000 kilometers. I also go skiing and cross-country skiing. My hematologist understands my activities. Last year I spent a week with my friends in Hrensko (this is a very nice biking area in the Czech Republic) and we travelled a big part of the Saxon Switzerland. We are going to travel to the Czech Canada this year. I still go for regular medical examinations, every day I exercise 15-30 minutes according to the book “The Five Tibetans”, several exercises with weights and a few clicks and I spend my time with hobby.

In the meantime our family have grown a little bit so we enjoy five grandchildren. I can only say thank you to all of the doctors who helped me come back into full-fledged, common life. Thanks also to my friends for tours, biking and skiing. And of course great thanks to my wife. She was with me the whole treatment and sometimes it was not easy for her at all.

– Josef

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Myeloma Stories

Christa KG – Biebesheim, Germany

Next week I´m going to celebrate my 67th birthday. Ten years ago , at the age of 57, I have been fully working at my job as a department manager. After three weeks diarrhea and a painful poly-arthritis I got a long lasting anemia, which weakened me so much, that I had to interrupt my job for months.

I had a couple of investigations, including a bone marrow biopsy without result. Finally, after seven months, a second biopsy resulted in the diagnose of multiple myeloma, stage III, igg lamba. So, from one day to the next I became a cancer patient. There was no time to reflect, but the need to act immediately.

So my first year was filled with chemotherapy, stem cell collection, high dose chemotherapy, tandem autologous sct. After one year I started again doing my job. Ten months later the first relapse. Another chemotherapy. After one year next relapse, trial to collect some more stem cells.  Chemotherapy. I suffered so much. Finally Bortezomib gave me a better outcome. Nevertheless, one year later next relapse. Then I was suggested to an allogenic sct. First I said no, but my sister was willing to give me her stem cells. They suited very well. So I approved and had the allo-sct in 2009.

It had been a hard period to survive, but I´d been successful and I lived 2.5 years without relapse. Since then I had some other relapses. Three years ago there where lesions in my liver. Radiotherpy was successful. Another year progression free survival followed. After that, lesions again within the liver. Actually I´m in chemotherapy again, hoping for good results next month.

Very soon after diagnosis I joined a patient´s group and I began to look for complementary therapies which were to support the medical treatment. The most important thing for me was to stay moving, every day. Even during the sct´s I went outside the hospital for walking. And I did Qui Gong, Shii Jitsu, and other relaxation techniques.

I discovered my voice after 40 years, starting to educate it and to sing within a choir. This was wonderful! I engaged more and more within the patient group, experiencing that I´m not alone and that there are a lot of patients in worse condition than me.

Finally I can tell you, that for me it is much more easier to live with myeloma, since I gave attention to death. I learned to integrate the possibility of dying into my life. I read some helpful books about death experiences and I constructed my own prospect of an existence beyond human living on earth. Since one and a half year I´m consuming curcuma every day. I believe, that this is supporting me in my medical treatment. I´m convienced, that every patient has to find out her/his own way. Nevertheless we may profit from exchanging experiences.

– Christa

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Myeloma Stories

Milada H. – Zilina, Slovak Republic

Read Milada's Story Pt.1
Read Milada’s Story Pt.1

In April 2005 I was diagnosed with Kahler Syndrome – bone cancer. I accepted the illness with sadness but with humility. Immediately I surrounded myself with music and a large number of books in which I started to look for help.

I radically changed my diet. I now eat according the principles of macrobiotics, which is based on cereals and cooked vegetables. I rarely eat meat, milk products, fat and refined sugar. I have lost 12 kg and completely changed my image, which helped me a lot psychically. This physical change was very quickly followed by a psychological change. Prayers, meditations, sleepless nights, tearful nights, conversations with God and with my late mother brought me everyday solutions and opened alternative views. I chucked away lots of old stuff and clothes which had previously been all over the apartment.

Finally I discovered my roots in my mother’s birthplace in Turiec. This, which for many people would be a hardship, became blessing for me and, thank God, changed my entire life for the good. My family, friends and colleagues are at this time a big supportfor me.

In Autumn 2005 I continued my chemotherapy treatment in the Faculty hospital in Martin where I have been under the care of the excellent consultants during my illness. After each treatment inthe hospital I was able to return to work.

Read Milada's Story Pt.2
Read Milada’s Story Pt.2

In October 2005, during a beautiful Indian summer my son, Michal got married. Maybe as a result of all the physical and emotional exhaustion, I then fell ill with painful shingles, soon followed by a serious case of pneumonia which resulted in me being admitted to hospital.

In February 2006 I underwent an autologous bone marrow transplant which was proved to be successful. After a two week stay in hospital and a further week recovering at home, I was able to return to work again and participate fully in school life. I can honestly say that the bone marrow transplant was the most emotionally and physically difficult thing I have had to face in my life. It has not been easy to come to terms with the experience and the recurring memories and as a result of this I have since had treatment from a psychotherapist for depression.

I have also had some dental problems after a tooth extraction as the gum would not heal properly and this in conjunction with sleeping problems has meant it has been quite a challenging time.

In April 2006 I was delighted to receive a special teacher‘s award from the Slovak Minister of Education for the high standard of results of my pupils. In terms of my diet, I have stopped following the macrobiotic diet I had been following which I have come to regret as my weight has increased! I currently do not take any nutritional supplements but I do drink high quality red wine everyday –and eat sauerkraut.

Despite being registered disabled, I am still working and have recently passed a computer course and feel that together with the support of my family, I will be able to live with Multiple Myeloma for along time in peace.

I want to thank you all.

– Milada

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Myeloma Stories

Linda C. – Canton, MI

In July of 2012 I was feeling pain in my right shoulder. My doctor did an X-ray and ultrasound and said she didn’t see anything and left it at that. The pain seemed to be moving toward my neck. Because the doctor said she didn’t see a problem I just kept putting ice on it. (That seemed to help.) I went to an orthopedic surgeon with my husband for his rotator cuff. While we were there he asked the doctor to look at my shoulder, because it’s been hurting for weeks and my doctor didn’t see a problem. She looked me over and ordered a MRI. A few days later she called and said she set me up to meet another doctor a friend of hers. I went to the Oncologist a few days later and he told me I had a cancerous tumor. He did more test and told me I have Multiple Myeloma in my Clavicle and Sternum. In October I started radiation for the pain, I went for 25 days. In January 2013 I went in for a recheck and told the oncologist I was having pain in my rib. He sent me in for more test and found the cancer was in my ribs, spine, and hip. I had 5 treatments for the pain in my ribs, and then started chemo. (Valcade twice a week and Zometa once a month) I did this for 6 rounds and then in July of 2013 had my Stem cell transplant. I went into complete remission. It’s been a year and a half. I’m now seeing my oncologist once every three months and I’m receiving Zometa once every three months.

– Linda

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Myeloma Stories

Bibi M. – Holbaek, Denmark

In 2003 I got my diagnose Multiple Myeloma because my bone in my left arm broke without doing anything. My world fell apart and I thought that I would die very soon. But after two transplantations with my own cells in 2003 and 2004 I have lived a normal life with my family and be a grandmother to my grand daughter.

I couldn’t go back to my work from before and I had to go on a social pension. That was the most difficult thing about my self-respect at that time but after about two years I was elected as a member of the headboard in our patients association here in Denmark, The Danish Multiple Myeloma Association.

I use all my energy to work for other patients and their families here in Denmark. I have seen how my story can give hope to all new patients and their families and at this time I must go through a new treatment and I feel fine and have so many dreams for my future. I wish all patients and their families so much good in the future and that the final cure will be found very soon!

– Bibi

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Myeloma Stories

Brian R. – Melbourne, Australia

I will always remember that night in late October in 1996.

My wife Roslyn had been going to a string of doctors complaining of rib pains for nearly 15 months and had just about every test possible. The doctors were acting as if she was imagining the pain, but I knew it was real as we could be out having a casual walk and her hand would go across her chest. We went back to this physician we knew and Ros trusted and explained that this pain was real, not imagined. He then decided to do another set of blood tests and some x-rays. On the day Ros was having the x-rays the doctor rang me to tell Ros that he had changed her chest x-rays to a full skeletal survey and that he would see us that night. He then told us that the Calcium reading had increased and that she was to see a haematologist to get confirmation whether she had hyper-parathyroidism or myeloma.

At this stage I was working as a retail pharmacist full time and decided that there was no way I could keep on working and become a carer. I admit I was a chauvinist, I used to come home from work and dinner was on the table, dirty clothes thrown in the hamper magically appeared washed, ironed and back in my wardrobe. Well this all changed. Ros went into a very black place for a couple of years while she went through chemo, a stem cell transplant and then monthly Aredia and then Zometa for about 10 years. As everyone knows, this resulted in monthly visits to the hospital and we did not just select the nearest Hospital but one on the other side of city, usually a 45 minute trip then to find parking.

During the early time I had contacted the Cancer Council of Victoria looking for a Myeloma support group only to be told that there was nothing like this. About the same time Robert Moran had done the same after his wife Glenys was also diagnosed with myeloma. The Support group co-ordinator at the Cancer Council, Pat Dobson, brought us together at a meeting and from this the Myeloma Foundation began.

Prior to Ros’ diagnosis we had always talked that I would retire and we would travel, but now Ros does not have the confidence to travel far from home, I can get her as far away as Cairns but this is also chasing the warmth especially during Melbourne’s winter. About eight years ago she gave me “permission” to travel by myself and initially my trips took me camping in the Kimberlies, up the centre of Australia and to the top of Cape York and Thursday Island. The following year I was due to go to Israel and 7 days before I was to leave she fell on our front steps and fractured her femur, the major bone in the thigh. Thanks to insurance she had surgery and then extensive rehab to learn how to walk properly again.

Ros is keen to live and enjoy her life now she has achieved her wish she made when she was diagnosed: to see both our children married and to have grandchildren. We now have six beautiful grandchildren who are the best medicine you can have. Helping with them, doing folk dancing upto four times a week and still working two days a week keeps Ros pretty busy.

As I am writing this I am remembering all sorts of things that happened along the way as this has been a real journey. We have learnt a lot about ourselves, our relationship and about our friends and so called friends. We have met a lot of fabulous new friends and we have grown through this process. We have different values now and often discuss how many of our friends have no idea of what Ros has been through or where she is at now. I could write a book about our experiences and the people we have met along the way.

Thankfully, Ros has not had any myeloma treatments since her transplant and though has a few other unrelated problems, is in pretty good health now but we still regularly visit her haematologist about every four or so months. Thinking back to 18 years ago there was very little in the way of treatments available and the prognosis was very poor. Now there are three major new products currently available and there are a number more being trialled and look like they will add to the arsenal of treatments available to our doctors.

I am now heading off to Scandinavia and Ireland next week with my sister. This is the fourth trip I have now done with her into different regions China, Cuba and Morocco. I am starting to get excited about this venture.

I know Ros will be fine as our daughter lives next door and I am on a promise to phone home every day. Thanks to Facetime, wifi and Iphones.

– Brian R.