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 old

Where do you currently live?

• Salisbury, NC

When were you diagnosed and how old were you?

• 11/10/2009 - age 42, IGG Kappa

Did 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?

• 3

Where have you received treatment?

• Wake Forest University Baptist Medical Center's Cancer Care Center

Explain your treatment history:

• 11/2009 - started first of 10 radiation treatments to the tumor in my left humerus
• 12/2009 - started first of 35 radiation treatments to the 4 tumors in my sacrum
• 12/2009 - started first of 4 cycles of Velcade-Doxil-Dexamethasone
• 2/2010 - received melphalan in preparation for stem cell harvest
• 4/2010 - autologous stem cell transplant
• 7/2010 - vertebraplasty for T-12 compression fracture
• 7/2010 - 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 results
• 2/2011 - finally able to stabilize on 5mg of Revlimid
• 3/2011 - increased Revlimid to 10mg (and side-effects begin) failed again
• 5/2011 - re-started Revlimid 5mg dosage

Why 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 Beacon
• MMRF
• Crazy 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 PAD
• 01/2010: Autologous Transplant #1
• 04/2010: 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?

1. Accept the situation and don´t start asking yourself questions like “Why me? Why in the age of 45 when the average is 71?”
2. Find a team of doctors you really trust
3. Learn about MM and treatment options but choose only “trustworthy” sources and discuss “your” findings with your doctors
4. Start to fight MM, comply to the rues the doctors give you and finish your treatment plan
5. Never 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, RI

Where 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 GEP

Did 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?

• no

What 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 Rock

Explain your treatment history

• I just started TT4 LITE.
• MVTD-PACE induction followed by stem cell mobilization
• Tandem ASCT
• VTD-PACE consolidation
• VRD maintenance for 3 years

Why 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 #34: Pam from West Orange, NJ

***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

Where were you born and raised?

• Short Hills, NJ

Where do you currently live?

• West Orange, NJ

When were you diagnosed and how old were you?

• Diagnosed March 1, 2010, age 48.

Did you know what MM was prior to diagnosis?

• No, but knew anything ending in “oma” is bad.

Is there anyone else your in family with MM?

• No

What led to your diagnosis?

• Exhaustion, bloody noses, anemia.

How many times were you referred before actually being diagnosed?

• Just once.

Where have you received treatment?

• Chemo: West Orange, NJ
• Stem cell transplant and follow-up: Hackensack, NJ

Explain your treatment history:

• 3/20/10: Started RVD
• 6/9/10: Completed 4 cycles of RVD
• 7/27/10: Autologous stem cell transplant
• 12/9/10: Was told I'm in "stringent complete remission"!!!

Why did you or your doctor choose a specific treatment?

• I’m young and healthy (except for MM), so I went for the transplant despite my fears.

What has been the side effects of the different treatments?

• Dex was the hardest to take—made me feel like I was jumping out of my skin. Long hot baths, calming music, and yoga helped. Revlimid gave me a mild rash once, but it went away with cortisone cream and never came back. Velcade caused some burning/ tingling and cramping in my calves, which went away about 6 months after I stopped treatment.
• During the transplant I was tired and nauseous. The diarrhea was a drag. So was the metallic taste in my mouth that made everything taste terrible. These things were all tough, but not excruciating—and they passed.

What has been the hardest thing about your MM journey?

• Fear of the unknown.

What are the top lessons learned that you would want a newly diagnosed MM patient to know about?

• You are stronger than you know. This journey is hard, but bearable. The love and support of your family and friends will help pull you through.
• Oh, and DON’T read all the scary statistics about MM—most of them are out of date and probably don’t apply to you.

How have you been able to stay positive and encouraged in your MM journey?

• I try to surround myself with people, things, and activities that create positive energy. Exercising—even if it’s just a slow walk—is good for body and soul. When things are hard, I tell myself, “this too shall pass.” I laugh as much as I can.

After being diagnosed... What perspective was changed the most?

• I try to live in the moment—the past is gone forever, the future is uncertain.

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?

• MM for Dummies has been SO inspiring and helpful! I dip in and out of many of the links on this blog. BMT Infonet was great for transplant info.

Myeloma Mondays #34: Dave from Westerville, OH

**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

Where were you born and raised?

• Columbus, Ohio

Where do you currently live?

• Westerville, Ohio (suburb of Columbus)

When were you diagnosed and how old were you?

• April 9, 2007

Did you know what MM was prior to diagnosis?

• No, I had never heard of...

Is there anyone else your in family with MM?

• No, No one....

What led to your diagnosis?

• I had had a couple of bouts with Pnuemonia and in intensive care for a couple weeks each time.

How many times were you referred before actually being diagnosed?

• The second bout with Pnuemonis they found a spot on my 6th rib

Where have you received treatment?

• OSU Medical Center at The James

Explain your treatment history:

• Velcade
• Revlimid Clinical Trial
• Thalidomide
• Harvested 7.5 stem cells for future transplant

Why did you or your doctor choose a specific treatment?

• My bone marrow layout shows that my type of MM is very treatable and responds well to Thaldimide.

What has been the side effects of the different treatments?

• Some neuropathy, rashes, appetite and taste changes....

What has been the hardest thing about your MM journey?

• The effect on my wife and kids and my elderly parents...

What are the top lessons learned that you would want a newly diagnosed MM patient to know about?

• Get to a good treatment facility (research), find a great Docter (Like Dr Don Benson MD, PhD at OSU The James) Checkout all your options, and don't give up...

How have you been able to stay positive and encouraged in your MM journey?

• Faith (Jesus), Friends and family support. Only with my amazing wife Missy...

After being diagnosed... What perspective was changed the most?

• Time, what is important in life....

Did you or a parent work in a field with or were exposed to toxic chemicals prior to diagnosis?

• I used to work in the Auto Manufactoring Industry (12 years)....

What MM sites or blogs had you found good information from after diagnosis?

• Mmore.org , www.themmrf.org

[Here is an online resource] of videos from MM Patients about their experience living and battling 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

Myeloma Mondays #32: Chris from Plainfield, NJ

Another very young person (Age 31) dominating Multiple Myeloma. I have become friends with Chris via Facebook and I can tell you that there aren't many people who are taking on such a diagnosis and treatment like Chris. He has made me laugh and increase my drive to dominate through all my treatment. The guy his hilarious and a true Dominator. Just last week he got the 60 day post-auto transplant news that he has achieved Complete Response! You deserve it man and keep dominating. -Phil

Where were you born and raised?

• North Plainfield NJ
  

Where do you currently live?

• North Plainfield, NJ
  

When were you diagnosed and how old were you?

• I was diagnosed on 4/13/10 at the age of 31. Just goes to proves MM is affecting younger patients nowadays
  

Did you know what MM was prior to diagnosis?

• I never heard of it before I was diagnosed. Matter of fact, I thought it had something to do with Melanoma
  

Is there anyone else your in family with MM?

• No
  

What led to your diagnosis?

• I went for my yearly physical and after a blood test, it was mentioned that I had elevated calcium and protein in my body. Initially, the doctors believed it was possibly a thyroid issue but after rounds of testing, it was determined I had MM
  

How many times were you referred before actually being diagnosed?

• I would say within a month, my condition was determined
  

Where have you received treatment?

• Hackensack University Medical Center under the care of Dr.Siegel and Dr. Donato

Explain your treatment history:

• 5/2010: Started RVD
• 8/2010: Completed 4 rounds of RVD
• 9/2010: Collected over 16 million stem cells in two days!
• 9/2010: Auto Transplant #1, made it out on day +10
• Going forward- Either a 2^nd auto transplant in the spring(tandem transplant), or we will play the waiting game and pray for a complete remission and that I do not fall out of it. If I do, we always have the option of going with a 2^nd transplant
  

Why did you or your doctor choose a specific treatment?

• My doctor wanted to be proactive with treatment because other than high calcium, I had no other symptoms. Honestly, I felt perfectly fine when I was diagnosed and did even throughout treatment.
  

What has been the side effects of the different treatments?

• Maybe I’m just extremely lucky, but I’ve had really no issues or side effects with Revlimid, Dex or Velcade. No neuropathy, no GI issues, nothing. Even the stem cell transplant was cake it seems. Other than some acid reflux, I sailed thru the transplant. The nurses would laugh at me because whereas most of the newly transplanted patients were sick or sleeping all day, I was fully awake and working on my laptop or doing schoolwork throughout my hospital stay
  

What has been the hardest thing about your MM journey?

• The hardest thing have been the emotional ups and downs I think. I feel extremely lucky and try to be positive how well I am doing, and my health and the way I feel plays a big part in that. I do have my days though when I get down about what I’m going through but I have a great support system of my wife, family and friends that get me through.
  

What are the top lessons learned that you would want a newly diagnosed MM patient to know about?

• The biggest thing is DO NOT GOOGLE OR SEARCH THE INTERNET for length of survival, etc. This was the very first thing I did when I was diagnosed and all I can remember is finding info talking about the longest I would survive was 3-5 years. I didn’t understand why I would want to bother going on treatment when I would die in such a short amount of time. I quickly found out this information was outdated, along with majority of the studies being centered around people double my age.
  

How have you been able to stay positive and encouraged in your MM journey?

• The best piece of advice is just to stay busy and try not to think about it too often. Like I said, I am one of the few who have had no side effects, but even while on RVD, I mountain biked, exercised, worked on the house, and just lived a normal life. There is no reason not to.
  

After being diagnosed... What perspective was changed the most?

• The perspective that has changed the most is to take things day by day. Too many of us worry about “where I will be in 20 years” or situations which are so far down the road. We can get hit by a bus tomorrow.
  

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 for Dummies
• Myeloma Beacon

Myeloma Mondays #31: Samantha from Auburn Township, Ohio

Below is Samantha, Age 38. This picture was taken at her Birthday party, just one week after her diagnosis!



Where were you born and raised?

• Chagrin Falls, Ohio
• Southern California in the summer-with my Dad( 1978-1988)
  

Where do you currently live?

• Auburn Township, Ohio

When were you diagnosed and how old were you?

• Diagnosed June 28, 2010- One week before my 38th birthday! (Stage 1- Non-symptomatic)
  

Did you know what MM was prior to diagnosis?

• Nope

Is there anyone else your in family with MM?

• I hope not!

What led to your diagnosis?

• I slipped on the top stair while carrying my 21/2 year old daughter. I held onto her instead of bracing myself. I fell hard onto my tailbone and sprained the muscles along the right side of my neck. I called an ambulance for fear I may have broken something. Ironically- at the end of the day- LONG day! The ER Doctor came back with my CAT scan results and told me I had nothing more than a bad sprain but they had what they call 'inccidental' findings. Tiny little holes that looked like capers through the vertabra in my neck. I had an appointment with an oncologist and an MRI the next day. By the end of the week I had my results. Bone marrow biopsy showed 10% plasma cells. The lesions were all through my ribs/spine/neck and the 10% gave me my diagnosis. The fact that I didn't fracture anything is a good sign that my bone damage is still minimal.

How many times were you referred before actually being diagnosed?

• Just once

Where have you received treatment?

• University Hospitals- Ireland Cancer Center-Dr. Judah Freidman
• Second opinion Doctor- Kenneth Anderson- Dana Farbor
• Both Doctors recomended RVD followed by Autologous BMT

Explain your treatment history:

• 07/26/10: Started RVD
• I just completed 2nd round of RVD
• After the first round my protein level dropped 60%( they say this is great!)
• I have no chromisome abnormalities
• ASCT planned for 11/10
• I just met my transplant Doctors last week and see them again on 10/06/10,
• They want me to only do 4 rounds- I assume they think it will be effective but they stressed that Revlimid prohibits stemcell collection.

Why did you or your doctor choose a specific treatment?

• I never considered NOT having a transplant due to my age and good health. I have a 2 year old daughter, a 4 year old daughter and an almost 6 year old son. I must aim for longevity. I am a stay at home Mom so obviously this has thrown a monkey wrench into our life!

• The transplant Doctors mentioned they may decide to do tandem transplants- I have been thinking about having a third opinion in Arkansas to hear what they have to say, etc.
  

What has been the side effects of the different treatments?

• Dex turns me back into a grumpy, brooding 16 year old. I have a bit of psychological distress looking at the 350$$$ pill I take at night (our amazing luck that insurance paid it does not make it any easier to swallow!)

• The dex also keeps me up late at night.

• I haven't had any bad effects from the velcade or Revlimid-
• I started taking acyclovir and it has given me a terrible taste in my mouth-ruins the taste of food and drink.

What has been the hardest thing about your MM journey?

• The absolute torture of my possible mortality with my three small kids. They are too little to understand what's going on so we have just kept it from them. I must look to complete remission and just MOVE forward.

What are the top lessons learned that you would want a newly diagnosed MM patient to know about?

• Be positive-be real. Let out how you feel to someone. Find your support system and use them! It is an absolute mess in the begining, finding out the different ways everyone copes in these situations. It is so isolating to be diagnosed. Even the people closest to you can't imagine what it's like. Sometimes people say the dumbest things- just let it go!

How have you been able to stay positive and encouraged in your MM journey?

• I have read so many encouraging stories. So many survivors! I swear the stats don't match all the survivor stories I've read. Everyone is more symptomatic than me but yet even more positive! It has been encouraging!

After being diagnosed... What perspective was changed the most?

• I have often thought about what I was doing/planning/thinking/feeling before my fall and it's funny that although this has been the biggest and scariest trial, it has changed my life in some of the most positive ways. I have no choice but to cherish every moment with my kids and my husband. I have no idea how I will make it through being separated from them during the transplants-but if it means years to come with them- so be it.

• I have met the greatest people during this time. The nurses and doctors and staff. All awesome. I'd like to find a place for me in there somewhere when this is all said and done. God got my attention, that's for sure. No more complaining about the laundry!

Did you or a parent work in a field with or were exposed to toxic chemicals prior to diagnosis?

• My dad was diagnosed with early onset of Parkinson's 2 1/2 years ago. He told me that his doctors mentioned Malathion that was sprayed over southern California to get rid of fruit flies in 81',82'83'84'. I remember it, in 1982, the fruit flies were so bad that summer. They sprayed overnight without telling the residents and everyone woke the next day to paint melted off their cars and the paint chipping off their houses. I have googled it and there are many class actions and trials connecting that pesticide with Parkinson's and MM.

What MM sites or blogs had you found good information from after diagnosis?

• I have literaly combed hundreds! I LOVE the ones with hope and positivity. I have no reason to doubt my luck in seeing the Myeloma so early. Who knows how long it would have been, or how much damage would have been done if I hadn't been pushed down the stairs by GOD himself?

***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 #30: Lovely Beth from Houston, TX

**Share your MM journey or that of a loved one and be a future Myeloma Monday by [clicking here].

Where were you born and raised?

• Born in Rochester, Minnesota (parents were both on staff at Mayo Clinic) and raised all over the world.

Where do you currently live?

• Houston, Texas

When were you diagnosed and how old were you?

• July 25, 2008 – age 61

Did you know what MM was prior to diagnosis?

• Yes, unfortunately, I did.

Is there anyone else your in family with MM?

• My mother was diagnosed with MM at the the age of 85. It was in the early “smoldering” stage and didn’t slow her down a bit. She visited her oncologist each month for blood/urine work and led her active, amazing life. A year later she was killed instantly in an automobile accident. As terrible as that was, I’m so grateful that she didn’t have to endure even a fraction of what I have gone through.

What led to your diagnosis?

• Kidney failure and broken vertebra and ribs.

How many times were you referred before actually being diagnosed?

• Once

Where have you received treatment?

• M.D. Anderson Cancer Center in Houston.

Explain your treatment history:

• 7/2008: Plasmapheresis, Dialysis, started Velcade, Dex, Thalidomide
• 8/2008: Kyphoplasty for fractured T6, T7, T9
• 9/2008 : Scans showed 7 fractured ribs
• 9/2008: Hurricane Ike hit Houston – without electricity for 15 days
• 1/2009: Began testing to see if candidate for ASCT
• 2/2009: Kyphoplasty for fractured T8
• 2/2009: Began Zometa infusion each month
• 3/2009: Apheresis for collection of 15 million stem cells – I was participant in clinical trial in which I received 10 million cells at transplant rather than the standard 5 million cells – thus 15 million needed so I could bank 5 million for future use.
• 4/2009: ASCT – hospitalized at MDA for three and a half weeks.
• 10/2009: Began Revlimid as maintainance therapy – have been on and off a couple of times because of low blood counts.
• 2/2010: Stopped Zometa because of damage to kidneys. My kidney function is always of concern.
• 4/2010: One year out from transplant and things are looking good with exception of impaired kidneys. I receive Procrit when Hemoglobin count drops below 10.

Why did you or your doctor choose a specific treatment?

• I was diagnosed at Stage IIIB with 75% infiltration. I knew I was in a dismal state and wanted aggressive treatment so I could live for awhile. Previous to MM I was in superb health.

What has been the side effects of the different treatments?

• All of the usual suspects - terrible nausea and vomiting (lost 40 pounds), Dex made me crazy, neuropathy in hands and feet (tried acupuncture but didn’t help), constipation, bone pain, hair loss, unrelenting fatigue. I think the single worst incident was the bone pain during the time I was giving myself the injections of Neupogen twice a day for stem cell collection. The pain in my sternum was akin to the cliché of having an elephant stomp on your chest during a heart attack. Thank God I had been forewarned by all the paperwork I had signed.

What has been the hardest thing about your MM journey?

• How it has frightened my family. I hate that they worry about me all the time. My husband and I had always assumed we’d grow old together. Now I’m not so sure. I try to find happiness in every day; however, it’s easier said than done sometimes.

What are the top lessons learned that you would want a newly diagnosed MM patient to know about?

• Go to a TOP cancer center for treatment , where your physicians and their staff have untold years of experience in treating MM and they can anticipate your needs. Even though you feel so out of control, you can take charge in some aspects. Remember that it is YOUR body and YOUR health insurance paying the hundreds of thousands of dollars, so speak up! For example, I found my first bone marrow biopsy excruciatingly painful. I realized that I would have many more in the future. From then on I had the biopsies done under anesthetic – I’m out for a few minutes, don’t feel a thing, and I’m on my way. Ditto for MRI until just recently. Now my fractures are healed enough that I can get through it without any sedation. I would want a newly diagnosed MM patient to realize that he/she must ask for help. Friends desperately want to help you, but they might not know how. Tell them! One of my friends recently commented that she had always been terrified of M.D. Anderson Cancer Center, and now she feels as though she could give tours of the place because she’s spent so much time with me there!

How have you been able to stay positive and encouraged in your MM journey?

• It’s difficult. I’m always waiting for the next shoe to fall. My husband is a phenomenal caretaker. I literally owe him my life. My children, grandchildren and sisters are so loving and supportive, but I feel tremendous guilt putting them through this. My adored Tony (90 pound black Lab) is always right by my side or curled up on my feet. My transplant oncologist was concerned that I was depressed and suggested a psychiatric consult. I take the antidepressant Lexapro and see a therapist at MDA every month. This has helped me so much. I do believe that God doesn’t give us a burden greater than we can bear. I know that there are millions of people in far worse shape than I. I am extremely grateful to be at MDA. People come from all over the world, and here I am just a few miles away. When I feel a bit stronger and pulled together, I’d like to volunteer at MDA.

After being diagnosed... What perspective was changed the most?

• I truly no longer sweat the small stuff. I keep any negative people out of my life (and that includes physicians and nurses.) I indulge myself in what I love (being with my grandkids, talking frequently with my sons and daughter, planning future trips with my beloved husband, staying close and speaking often with my few close friends, keeping my herb garden in decent shape, playing the piano and knitting when the neuropathy in my hands allows, eating chocolate cake if I feel the inclination.) When I hear of a friend or just an acquaintance who has been diagnosed with cancer I call them right away, and I tell them that I will keep calling (or e-mailing, whichever they prefer) to keep tabs on them. I offer to take them to chemo and stay with them or be with them when they have their port inserted. I am in the unique position to be able to calm their fears.

Did you or a parent work in a field with or were exposed to toxic chemicals prior to diagnosis?

• I spent part of my childhood living in North Africa (Morocco.) I recall having to wash all food in a solution that tasted like Clorox. When we would visit European countries or the U.S. my dad would joke that it was odd to eat fresh food and water that didn’t taste like Clorox! Also, there was a paper factory nearby where we lived that emitted an awful odor and a few times each year the heavy sirocco winds would blow in and you couldn’t even go outside because the odor was so horrible. I lived on the Exxon Refinery compound in San Nicholas, Aruba for three years in my mid twenties.

What MM sites or blogs had you found good information from after diagnosis?

• Ohhh……you need to be so careful here as there is so much terrifying and outdated info out there. I think the sites that connect with MM patients are the most useful.

****Read the stories of other Multiple Myeloma survivors by going [here]!

Myeloma Mondays #29: NY Fan from Southeastern PA

**Share your MM journey or that of a loved one and be a future Myeloma Monday by [clicking here].

Where were you born and raised?

• North Jersey, Exit 135 – that’s how we do geography in New Jersey

Where do you currently live?

• Southeastern PA

When were you diagnosed and how old were you?

• January, 2009 – 55 years old.

Did you know what MM was prior to diagnosis?

• Actually yes, an acquaintance had it for 7 years and I heard his story, broken bones, etc. However he does not have the blood marker so he needs to get semi-annual PET scans to see if there is any progression. He’s become one of my best friends. We are on the same meds and also talk on Dex days.

Is there anyone else in your family with MM?

• Not that I know of.

What led to your diagnosis? (example: broken vertebra)

• Normal CBC for cholesterol and sugar screening. Revealed a high total protein, more tests and the M Protein was 3.1. Didn’t take long to be diagnosed (a week).

How many times were you referred before actually being diagnosed?

• Just once, I did not like my oncologist at first. Almost ‘fired’ him, glad I didn’t, our relationship is very good now.

Where have you received treatment?

• At the present time I am on oral chemo, Rev 25 mg (21 days on, 7 off) and Dex 40mg once a week. I also get a dose of Zometa every other month at my doctor’s office.

Explain your treatment history:

• From January, 2009 – August 2009 – nothing as we were still in the smoldering state.
• August, 2009 – M Spike went to 4.2, started the Rev/dex + Zometa.
• M Spike decreased to 1.5 by January, 2010 and has stayed there for the past 6 months. Visiting U of P this month to decide next steps. Add Velcade, harvest stem cells etc.

Why did you or your doctor choose a specific treatment?

I am transplant eligible, no kidney or bone issues to date and I was lucky we caught my MM early. I was never even at Stage I. I am very active (ex-Marathon runner, cyclist, etc.) and I resist an interruption to that; however I believe we will harvest my cells soon and probably prepared for an auto SCT within the next year. Maybe not, my disease is stable and except for minor anemia, Hemoglobin between 12.2 & 13.2 and a slightly low RBC, I feel normal. Calcium levels and Creatine levels are normal. No lytic lesions to date.

What have been the side effects of the different treatments?

• The Dex gets me in trouble, I get aggressive in my behavior and I exercise heavily that day to counteract that. It works. Trouble sleeping on Dex days. The Rev gave me a rash, that went away and diarrhea which is under control if I eat bananas and yogurt.

What has been the hardest thing about your MM journey?

• Just learning you have cancer. Once I got used to the dx you just live with it. This has been a pretty good 1 ½ years for me and I am looking for more good health years in the future.

What are the top lessons learned that you would want a newly diagnosed MM patient to know about?

• Get informed and DO NOT read about median survival rates. They are dated and useless. Don’t slow down, exercise, drink wine, do what you normally would do and as hard as it is, push the body. I truly believe getting the body to transport oxygen through the body has an effect on production of new RBC and a negative effect on the MM cells.

How have you been able to stay positive and encouraged in your MM journey?

• Exercise, bike riding, golf, gym workouts all clear my mind and make my body feel good. As long as I know I can move my body I know I have a handle on things. Bike riding is the best!!

After being diagnosed... What perspective was changed the most?

• Protecting my family and living each day to the fullest. An old cliché but it’s true.

Did you or a parent work in a field with or were exposed to toxic chemicals prior to diagnosis?

• Father was probably exposed to asbestos during the 60’s (construction) but he lived to be 91…

What MM sites or blogs had you found good information from after diagnosis?

• CancerCompass.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! -Phil

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Myeloma Mondays #28: Matt from Columbus, OH

Matt is a very special guy who is a great MM advocate. We may be from rival schools, but our unique situation of being young with MM has brought us together. Matt is helping launch the first Columbus DomiNation event during the OSU vs UM game in November...you should come if you are in the area!

Where were you born and raised?

• Columbus, Ohio

Where do you currently live?

• New Albany, Ohio

When were you diagnosed and how old were you?

• I was diagnosed in August of 2009 at the age of 25. I was also diagnosed with a secondary disease, Amyloidosis. This disease occurs in about 10% of Myeloma patients.

Did you know what MM was prior to diagnosis?

• I had no idea prior to my diagnosis. I think for the first week or so I kept referring to it as ‘melanoma’.

Is there anyone else your in family with MM?

• There is not.

What led to your diagnosis?

• I was feeling extremely fatigued. I literally did not have the energy to get out of bed or walk to the restroom.

How many times were you referred before actually being diagnosed?

• I was luckily, only referred once before my diagnosis, though I spent 7 weeks in the hospital initially.

Where have you received treatment?

• I was first treated at the Cleveland Clinic and now at the James Cancer Hospital at The Ohio State University Medical Center.
• 8/2009: Started Velcade
• Thanksgiving 2009: Last Velcade treatment
• January 20^th 2010: Stem Cell Transplant

Why did you or your doctor choose a specific treatment?

• Because of my age and my previously good health history, my doctors have been extremely aggressive since day one. From the day of diagnosis and understanding treatment options, I always was preparing myself for transplant.

What has been the side effects of the different treatments?

• It’s been fairly typical. Weight loss, hair loss, and generally feeling crummy. I’ve had some neuropathy from the Velcade, but it’s relatively minor.

What has been the hardest thing about your MM journey?

• Other than coming to terms with the disease, the hardest part by far has been seeing the toll that it has taken on my family. At times it’s been hard not to feel like a burden, but seeing the strength and grace that they’ve shown has been a beacon of hope for me.

What are the top lessons learned that you would want a newly diagnosed MM patient to know about?

• First and foremost, do not focus on the statistics of life expectancy. These are outdated and the research for Myeloma is booming. Dig in and fight this disease with everything you have.

How have you been able to stay positive and encouraged in your MM journey?

• I’ve got a phenomenal support base, my family and I got engaged after my diagnosis. My fiancée has been there through everything and seeing the good in people has really given me a perspective on life that I did not have before.

After being diagnosed... What perspective was changed the most?

• I was in bad shape, not just the cancer but the Amyloid caused my kidneys to fail. Going through all of that I just realize all of the important and precious moments that we encounter. So many times we overlook something as it happens but I’ve tried to step back and fully enjoy everything that happens.

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?

• Mmore.org