Myeloma Mondays #41: Jeff from Salisbury, NC

Where were you born and raised? Born: Stuttgart, Germany (US Army); Moved to Salisbury, NC when I was 9 months oldWhere do you currently live? Salisbury, NCWhen were you diagnosed and how old were you?11/10/2009 – age 42, IGG KappaDid you know what MM was prior to diagnosis? No, I had never heard of it.Is there anyone else your in family with MM? No.What led to your diagnosis? Extreme pain in my back/sacrum. Turns out I had a compression fracture of the T-12 and 4 tumors in my sacral area; along with tumors in both my humeri and fibula and lesions on most of the flat bones in my body.How many times were you referred before actually being diagnosed? 3Where have you received treatment? Wake Forest University Baptist Medical Center’s Cancer Care CenterExplain your treatment history:
11/2009 – started first of 10 radiation treatments to the tumor in my left humerus12/2009 – started first of 35 radiation treatments to the 4 tumors in my sacrum12/2009 – started first of 4 cycles of Velcade-Doxil-Dexamethasone2/2010 – received melphalan in preparation for stem cell harvest4/2010 – autologous stem cell transplant7/2010 – vertebraplasty for T-12 compression fracture7/2010 – tried maintenance Revlimid 10 mg (failed – neutropenic)8/2010 – radiation to stubborn tumor at T-10 (10 treatments)8/2010 – 12/2010 – off and on the maintenance Revlimid 5 – 10mg with poor results2/2011 – finally able to stabilize on 5mg of Revlimid3/2011 – increased Revlimid to 10mg (and side-effects begin) failed again5/2011 – re-started Revlimid 5mg dosageWhy did you or your doctor choose a specific treatment?
I requested to be treated aggressively. I was “young” and in great shape before this took me down. I thought I would be up and running again in no time.What has been the side effects of the different treatments?
With the VDD/radiation treatment, the biggest side effect was fatigue. I also had styes on both eyes that my hemalogist-oncologist related to the velcade. The chemo put me into a post-menopausal state, which has remained.Once I had the melphalan, nausea was the worse followed closely by the loss of all my tastebuds.Now with the Revlimid, the fatigue is back.I continue to have back pain and spot tenderness at the sites where the tumors were located.What has been the hardest thing about your MM journey? Accepting that I cannot do the things I loved to do before — rafting the Gauley; hard-impact exercises; hardscaping my lawn; walking my big dog, Joe. Accepting that I may not be able to work like I worked before. I have had a hard time embracing “new normals.”Fear of relapse has been pretty constant. I really wish they would re-do those statistics!What are the top lessons learned that you would want a newly diagnosed MM patient to know about?Stay strong in spirit…you will get through the treatment.It’s ok to lean on others for a while.Seek someone outside your inner circle that you can talk to…a counselor, spiritual leader, etc. Someone you can really vent to without having to worry about worrying them.How have you been able to stay positive and encouraged in your MM journey?
I am one of the lucky ones to have a supportive family – parents, sisters, husband, son – who have walked this whole journey with me. I also have great friends and neighbors who have been there for me and Jeff, too.My dogs, Gus and Joe, were wonderful companions. We started calling Joe, Dr. Joe, because he was constantly by my side when I was at my sickest. His 88-pound body actually was very healing. It was like a full-body compression heating pad.After being diagnosed… What perspective was changed the most?
Priorities. Prior to diagnosis, I was a workaholic. I worked 10 – 12 hour days in a stress-filled job, and loved it! Now, I would rather spend my time with my friends and family…spend time in nature…spend time with my dogs. I’ve decided to just be good at work and great at wellness for the rest of my life.Did you or a parent work in a field with or were exposed to toxic chemicals prior to diagnosis?
Yes. Prior to going into hospital administration, I was a horticulture therapist. I handled a lot of pesticides, fungicides, herbicides, and fertilizers.Immediately prior to my birth, my father was in contact with Agent Orange in Vietnam.What MM sites or blogs had you found good information from after diagnosis?Myeloma BeaconMMRFCrazy Sexy Cancer (Kris Carr) – not a MM site, but a different way of dealing with having an incurable cancer


Myeloma Mondays #40: Geert from Hamburg, Germany

Geert with his little duck pottery with football and helmet (almost blue and maize) in a small souvenir shop in Spain last year.

Where were you born and raised? In was born 1965 in Hamburg, Germany Where do you currently live? Hamburg, Germany – I´m still living in Germany´s most beautiful town When were you diagnosed and how old were you? (example: 8/8/08 – age 28, IGG Kappa) 08/12/2009 – age: 44, IGG Kappa Did you know what MM was prior to diagnosis? I even haven´t heard a word about it Is there anyone else your in family with MM? No, nobody What led to your diagnosis?
Nothing specific, I´ve just been weak all the time How many times were you referred before actually being diagnosed? Just one time. My doctor sent me directly to the hospital and the first blood test showed the MM indicators Where have you received treatment? Asklepios Hospital, Hamburg, Germany
Explain your treatment history:
09/2009:3 cycles PAD01/2010: Autologous Transplant #104/2010: Autologous Transplant #2
Why did you or your doctor choose a specific treatment? Fortunately our team of doctors is really experienced and we have a dedicated ward for stem cell transplants. So, the decision was based on the “typical” criteria (staging, etc.) and the doctor´s experience What has been the side effects of the different treatments? No, side effects at all What has been the hardest thing about your MM journey? The first days after diagnosis when I and my family started to understand what it really means. What are the top lessons learned that you would want a newly diagnosed MM patient to know about? Accept the situation and don´t start asking yourself questions like “Why me? Why in the age of 45 when the average is 71?”Find a team of doctors you really trustLearn about MM and treatment options but choose only “trustworthy” sources and discuss “your” findings with your doctorsStart to fight MM, comply to the rues the doctors give you and finish your treatment planNever quit!!

How have you been able to stay positive and encouraged in your MM journey? From the first day till complete remission – With the help of my wife, daughters, family and friends. As soon as possible live your normal live even during times of chemo and during hospital stays. In times of cell phones and internet it is quite simple to stay connect when being in hospital. I´ve used internet video telephony to talk with my daughters because they were not allowed in the transplant ward. I also follow the various sport seasons on the internet. For me it also worked quite well to stay in contact with my colleagues and see progress on the projects I used to work for before and between my hospital stays. But not all these things might work for other MM patients as well. Everybody has to find his own way but I hope some of my ideas will help. After being diagnosed… What perspective was changed the most? Some things became less important but today (one year after the last HDCT/transplant and with great results) it is pretty much as it was before. Of course from time to time I think about MM but not too much. When time is limited why should I waste it by thinking about MM all the time. The thing I have changed is that I fulfilled some of my plans/ dreams. After being in Ann Arbor and the Big House I wanted to also see a game at Penn State. That´s what I did last year. Did you or a parent work in a field with or were exposed to toxic chemicals prior to diagnosis? Maybe my father during WWII What MM sites or blogs had you found good information from after diagnosis? The IMF website and on facebook and the DKMS on facebook


Myeloma Mondays #39: Jody from Baltimore, MD

Yet another young 30 something taking on Multiple Myeloma with two young and adorable children. One than turns 5 today! Jody is graciously documenting her story via her own blog; so add another trooper to the myeloma community that is going to help bring awareness to this disease and educate us all throughout her own personal journey to dominate Multiple Myeloma! Here is a detailed account of her diagnosis.
Jody’s Blog: M is for Myeloma

Where were you born and raised? Warwick, RIWhere do you currently live? Baltimore, MD (Also lived in Boston and Dallas)When were you diagnosed and how old were you? 12.22.2010, just turned 34. I’m hyposecretory Kappa light chain with numerous focal lesions. I have a t(11,14) translocation by FISH, and am low risk by GEPDid you know what MM was prior to diagnosis? As a research biologist with some background studying carcinogenesis I’d heard of it, but didn’t know any specifics.Is there anyone else your in family with MM? noWhat led to your diagnosis? I broke two ribs last summer. The first doctor to see me did mention multiple myeloma, but there were no smoking guns from the tests he ran and I don’t fit the demographic so he didn’t dig too deep.How many times were you referred before actually being diagnosed?I started having another painful spot at the end of October and I found myself a new doctor. He referred me to an orthopedic oncologist, who ran the SPEP and did a fine needle aspiration of one of my lesions. The SPEP was normal, but the lesion showed atypical plasma cells. He then referred me to a myeloma specialist at Johns Hopkins. I then went in search of several other opinions after doing my homework on different treatment approaches.Where have you received treatment?
Myeloma Institute for Research and Therapy in Little RockExplain your treatment history
I just started TT4 LITE.MVTD-PACE induction followed by stem cell mobilizationTandem ASCTVTD-PACE consolidationVRD maintenance for 3 yearsWhy did you or your doctor choose a specific treatment
The first doctor gave a very “choose your own adventure” recommendation. Start with a choice of 3 drug induction, do an ASCT immediately or wait until later, and consider maintenance therapy. By this time I’d done a lot of my own research, including finding lots of great blogs and websites and also reading a lot of the primary literature and scientific reviews on myeloma. I’d also had enough people mention Arkansas that I knew it needed to be considered seriously. I questioned my Hopkins doctor about it and she restated basically the concerns I’d heard repeated time and again. No one can say the outcomes are better, it’s harsh treatments, and you may risk something by using everything up front. I booked an evaluation and also an appointment at Dana Farber for a third opinion. In the end I knew Arkansas was the place for me, but I know it’s not for everyone.What has been the side effects of the different treatments?
I’m only 6 days in, so only very minimal. A tiny bit of nausea, a little tingling from the velcade, and pretty tired today. What has been the hardest thing about your MM journey?
Thinking of my family and how this will affect them, especially my kids (age 2 and 5).What are the top lessons learned that you would want a newly diagnosed MM patient to know about?
Do your homework and reach out to other patients!! There are so many wonderful people out there willing to share their experiences and perspectives and it’s been so incredibly valuable contacting people. I can’t even imagine how difficult it is for someone who doesn’t know much about biology to get to the bottom of all the different treatment approaches out there, but make sure you ask questions and find a doctor who can take the time to help but things in terms you can understand. How have you been able to stay positive and encouraged in your MM journey?
At first it was not easy at all, but know I’m in a better place about it all. It’s not helpful to get stuck in the muck of feeling helpless and scared and sad. It is important to work through those feelings and to acknowledge them and address them, but you’ve got to able to move past them. My husband has been an incredible support and has helped pull me through some of that. In the end you have to accept the lot in life you have and do everything you can to life your life to the fullest and embrace every day. As a clinic nurse said to me the other day “tomorrow is not promised to me either”. After being diagnosed… What perspective was changed the most?
Gosh probably everything. I think living with cancer like this just makes me slow down and reevaluate the important things in life. I’m more dedicated to living in the moment. Did you or a parent work in a field with or were exposed to toxic chemicals prior to diagnosis?
I’m a research scientist so I’ve worked in many labs. I’ve worked with some toxic chemicals and also with cell lines containing human and animal viruses associated with cancer so there is definitely a concern that could have contributed. My father is also very worried that his exposure to agent orange in Vietnam could have been passed along to me somehow, but I think that’s very unlikely. I have a PhD in Environmental Health Sciences with a concentration in molecular toxicology so I am really interested in links to environmental exposures especially since more and more young people are being affected.What MM sites or blogs had you found good information from after diagnosis?Too many to list them all…this one of course, also Myeloma Beacon, International Myeloma Foundation***To add your story to Myeloma Mondays copy and paste this questionnaire (click here) and send it in an email to phil at cancerkicker dot org. I would love to share your story! -Phil


Myeloma Mondays #38: Jean from Brookline, NH

Another 30-Something diagnosed with Multiple Myeloma.

***To add your story to Myeloma Mondays copy and paste this questionnaire (click here) and send it in an email to phil at cancerkicker dot org. I would love to share your story!

Where were you born and raised?
I was born in 1970 in Massachusetts where I spent my entire childhood.Where do you currently live?
My husband and I and our 2 sets of twins (ages 7 and 10) live in Brookline, New HampshireWhen were you diagnosed and how old were you?
I was diagnosed on June 10, 2011. I was 39.Did you know what MM was prior to diagnosis?
I never heard of MM before my diagnosis.Is there anyone else your in family with MM?
No.What led to your diagnosis?
I suffered a broken sternum in January 2010. In addition, I had a plasmacytoma on my chest which was removed in May 2010. It came back on June 3 as a malignant tumor.How many times were you referred before actually being diagnosed?
Right after my results from the plasmacytoma I was referred to an oncologist. I received a bone marrow biopsy and it came back positive for Mulitple Myeloma.Where have you received treatment?
I received Dexamethasone, Revlimid and Velcade for 4 cycles at my local Oncologist office in New Hampshire. I received an Autologous Stem Cell Transplant under my Oncologist at Dana Farber in Boston, MA on 11/18/2010.Explain your treatment history:
7/2010 : Started RVD11/2010: Autologous Stem Cell Transplant2/2011: Will begin 2 cycles of RVD followed by Revlimid maintenance therapy.Why did you or your doctor choose a specific treatment?
It was in my doctor’s opinion that I was a good candidate for stem cell transplant because of my young age and physical health.What has been the side effects of the different treatments?
I have had minimal side effects from treatment. I had some mild peripheral neuropathy during my treatment with Velcade. However, I have not experienced any neuropathy since I stopped treatment. I had a lot of sleep deprivation from the Dexamethasone. Of course hair loss as well. I had my Melphalan dosage in November and I still have no signs of hair growth.What has been the hardest thing about your MM journey?
The hardest thing for me during my MM journey is the realization that I have an incurable cancer. I am trying very hard every day to treat this as a chronic disease, however MM is currently an incurable cancer. I am waiting to hear my M Spike results since my transplant. Physically I feel very strong and I have recovered quite well. I have had incredible energy to keep up with my kids since I have left the hospital. However emotionally it has been so difficult. I can no longer plan too far into the future. This is so difficult when you have 4 children who are growing and changing every day. Currently I feel like I am in limbo. I have spent the last 7 months fighting this disease with intense treatments. And now I am waiting to hear how effective the treatments have been and getting prepared to start treatment up again. It is very challenging to begin living my “New Normal”. I am hoping that someday I can wake up in the morning without cancer being my first thought.What are the top lessons learned that you would want a newly diagnosed MM patient to know about?
A supportive family and friends will get you through some of your darkest days. It is so hard at times to ask for help. But learn to ask. My community, family and friends have been so supportive with meals, babysitting, and prayers.How have you been able to stay positive and encouraged in your MM journey?
My children and husband are the reason I am doing so well today. They give me such strength. Children are wonderful distractions and show such resilience. In addition my friends and family have given us such support and love. While I was in the hospital my husband and children received so much support. I was able to focus on me and my health because I knew they were all in good hands. I continue to be encouraged by other people’s stories. I constantly read other people’s blogs and surround myself with positive people.After being diagnosed… What perspective was changed the most?
I would have to say appreciating the true beauty in all the little things in life. It is so easy to get caught up with our busy lives. I no longer take for granted all the little blessings in life like hearing my kids giggle or sharing special moments with my kids. I no longer focus on what I want in the future, but rather, enjoy all that I have today. Taking time out to spend with each of my four kids, my husband, friends and family that is everything to me.Did you or a parent work in a field with or were exposed to toxic chemicals prior to diagnosis?
No.What MM sites or blogs had you found good information from after diagnosis?
Of course Multiple Myeloma for Dummies, Pat’s Place at Myeloma Beacon and Julie’s Myeloma Moments. Also I have blogged my journey at jeanielivingwithmultiplemyeloma.blogspot.com.***To add your story to Myeloma Mondays copy and paste this questionnaire (click here) and send it in an email to phil at cancerkicker dot org. I would love to share your story!


Myeloma Mondays #37: JoAnne from Moore, TX

***To add your story to Myeloma Mondays copy and paste this questionnaire (click here) and send it in an email to phil at cancerkicker dot org. I would love to share your story!

Where were you born and raised?I was born and raised in San Antonio, Texas Where do you currently live?
My family and I live in Moore, Tx
When were you diagnosed and how old were you?I was diagnosed July/03 about to turn 35Did you know what MM was prior to diagnosis?
No
Is there anyone else your in family with MM?
NoWhat led to your diagnosis? I was what felt like a crick in my neck. I went to a chiropractor to have it manipulated. He wanted to run x-rays before he did. To our suprise he took the x-rays and said he could not do it. He had me wait and sent me to get a catscan and MRI. I was so scared. He said he didnt want to scare me but that it was important for me to get this done immediately. Before I left his office they called from the Imaging place stating for me to be there first thing in the morning. As i left he told me to be very careful and to avoid any bumps. I cried all the way home. I went to my appt the next day. The doctor that types up the report came up to me and said I need you to go to the ER as soon as you get out of here. I did. Crying. I saw a neurosurgeon and said I had to have my C4 spine removed. I was lucky it hadnt collapsed cause there was no bone left. 3 days later I was in surgery. The biopsy came back that it was cancer(MM) . The c4 spine was removed and replaced with bone from my hip and fused to the c3 and c5.How many times were you referred before actually being diagnosed?
Once
Where have you received treatment?
2003-Cancer Treatment Center(CTRC)-San Antonio, Texas 2009-Methodist Transplant Hospital-San Antonio, Tx
Explain your treatment history (bulleted list)
8/03: Radiation12/08:Radiation01/09:Chemo02/09: did a study to multiply my own stemcells, stem cell transplant 2/27/09. Have been on Revlimid for 4 months now.Why did you or your doctor choose a specific treatment ?
I was told I was a good Candidate for the stemcell transplant due to me blood work and test coming back positive with the Revlimid.
What has been the side effects of the different treatments?
I have been very fortunate not to have any side effects from my meds.
What has been the hardest thing about your MM journey?
The hardest thing about my journey is that it is not my own. It has affected my family and my children. Its pretty sad when my 3 year old knows when I am having a bad day and she comes and rubs on my legs when I am having those excrutiating leg cramps or I am feeling under the weather. The cancer in my spine has damaged my nerves in my legs and their is nothing i can take to eleviate the pain., also the forgetfulness and taking all the meds i have to take everyday. There are days where I just want to throw them all the way, but if I want to live those pills are a must, so when you feel like you just cant or dont want to, look around you cause its for my family and myself that I keep fighting.What are the top lessons learned that you would want a newly diagnosed MM patient to know about?
Do not be afraid to ask questions. Write them down because when you get into the Dr.’s office your brain tends to run a mile a minute.
How have you been able to stay positive and encouraged in your MM journey?
I have managed to stay positive through my family. I have a great husband and wonderful children who have helped me. My daughters are still very young and I am fighting this darn disease cause they need me as much as I need them. Its also through the grace of God that I am still here. After being diagnosed… What perspective was changed the most?
That life is short and enjoy every minute of it cause every minute you waste worrying and empowering this darn disease is time lost.
Did you or a parent work in a field with or were exposed to toxic chemicals prior to diagnosis?
No
What MM sites or blogs had you found good information from after diagnosis?
Multiple Myeloma Research FoundationLeukemia & Lymphoma Society