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 Hampshire

When 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 RVD
• 11/2010: Autologous Stem Cell Transplant
• 2/2011: 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!

It's not all about numbers for me

Although I often fixate on numbers, trends, statistics; a big part of who I am is my faith and belief in the unseen. This is probably why I am filled with so much hope that through all this treatment and prayer I live with confidence that I will receive a positive outcome and so will the others on this journey with Multiple Myeloma.

A couple of months ago I mustered up some strength to share my life journey at the Ann Arbor Vineyard Church (FF to 22min mark). While preparing for the talk it became very obvious that the last 6 years of my life (Cassie's too) has been filled with a lot of loss, pain and what I would sum up as darkness.

But it hasn't felt like extreme darkness, although a quick recount of all the unfortunate and outright horrible experiences would deem otherwise. Today I stumbled across a verse that made me realize why I haven't been consumed by the lurking and frequently consuming darkness in my life.

You are my lamp, O LORD; the LORD turns my darkness into light. -2Samuel 22:29

In my struggle to understand life, marriage, work, kids and now cancer; God has taken the darkness that has often times surrounded me and transformed it into a light that has shined onto my path to bring direction, clarity and ultimately comfort in knowing that He is there to shepherd me so that I don't have to go at this life alone. The greatest part...is that regardless of what happens...I know how the story ends.

Dominate Life.

-Phil

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 35

Did you know what MM was prior to diagnosis?

• No

Is there anyone else your in family with MM?

• No

What 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 2
• 009-Methodist Transplant Hospital-San Antonio, Tx

Explain your treatment history (bulleted list)

• 8/03: Radiation
• 12/08:Radiation
• 01/09:Chemo
• 02/09: 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 Foundation
• Leukemia & Lymphoma Society

Down, Down, Baby!

The M-spike is almost DOMINATED! For the first time in almost three months and six rounds of aggressive chemotherapy later, my M Protein has gone from 0.2 to 0.1. I was starting to get pretty irritated from hearing 0.2, 0.2, 0.2, 0.2, 0.2 while aggressively treating the disease through consolidation therapy following two autologous bone marrow transplants this summer.

I realize everyone is different, but most of the young people I follow with MM have achieved CR (Complete Response) following induction therapy that was much less aggressive than mine, followed by a single autologous transplant. We have found that because my disease was advancing slowly, it has followed that same trend on its way out of my body.

To be transparent, this news brings a big sigh of relief. I had a number of folks remind me to remain patient and that a M-Spike of 0.2 is great, but when your goal is CR and you have been taking aggressive therapy for 4 months with no signs that the disease is diminishing; it can start to weigh on your emotions especially when you are physically being taken down to the weakest point in your life.

Thanks to everyone who has remained so supportive throughout this journey. We cannot thank you enough for the meals, the words of encouragement and other support that has come in various forms. A special thanks to Daniel for challenging me to believe that God has healing for me and wants to dominate this disease. My prayer for the entire week was to receive this word and live with an expectation that my M-spike would be lower.

Where to next? Well 0.0 of course! I begin maintenance therapy which takes me from three drugs to one; and the one that I will be on is only 60% the dosage. We will be checking the M-Spike again in 5 weeks.

I'll end with a picture of Coach Hoke and me after the Washington Kick. Watch out Myeloma and watch out Ohio!

Myeloma Mondays #36: Joe from Kenilworth, IL

***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!

This week's post is written by Linda, Joe's wife and caregiver.

Where were you born and raised?

• Born in White Fish Bay, Wisconsin and raised since 4^th grade in Kenilworth, Illinois
  

Where do you currently live?

• Kenilworth, Illinois
  

When were you diagnosed and how old were you?

• Diagnosed 3/9/09 aged 47 IGA Lamda
  

Did you know what MM was prior to diagnosis?

• no
  

Is there anyone else your in family with MM?

• no
  

What led to your diagnosis?

• Had breastbone pain after a golf outing 8/08—Thought it was a pulled muscle then diagnosed by two doctors as costochondritis.

• Then in February and March had increasing pain in leg and hip and could barely walk. A new doctor ordered an MRI.
  

How many times were you referred before actually being diagnosed?

• Once
  

Where have you received treatment?

• Evanston Hospital in Evanston, Illinois and also see a myeloma specialist at Northwestern in Chicago, Illinios
  

Explain your treatment history:

• 3/11/09 Vetebroplasty and resection of tumor at L5
• 4/2/09 Started treatement of valcade and dex along with 20 radiation treatments a
  
• 6/09 Add Revlimid after radiation ceased ( Achieved Cr after one month)
• 8/09 Harvest 2xs Difficult harvest. Port infection and removal
• 9/24/09 Stem cell transplant after high dose melphalon
• 12/15/09 Maintenance Revlimid 10mg daily
• Note that he is on a great deal of pain medicine for the neuropathy that he had from the tumor early on.
  

Why did you or your doctor choose a specific treatment?

• We chose to do Joe’s treatment locally as it was best for our family situation.
  

What has been the side effects of the different treatments?

• Velcade and dexamethasone- tolerated quite well. Because of brain injury, sleep has never been an issue, so the dex did not interrupt his sleep.
• Revlimid- initially a facial rash that lasted about one month.
  
  What has been the hardest thing about your MM journey?
• Again, the brain hemorrhage and loss of short term memory have been the hardest things to deal with in my life. As far as the mm goes, just knowing that I have cancer and MAY have a shortened life expectancy.
  

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

• Do the research about the disease. Make sure that you are close to your love ones and have a network of support.
  

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

• We are very hopeful with all the advancements that have been made in mm in the past 7-10 years. We are grateful to achieve such good results with the treatment thus far.
  

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

• This is coming from his wife Linda: Joe has always had –even before all his health issues- the perspective that our life on earth is a means to get to heaven. All of this life, should be lived in respect to earning a place in heaven. This perspective has not changed, it has just intensified.
  

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?

• Nick’s
• MM for Dummies
• Tim’s Wife
• Myeloma Hope
• Hamada
• The Adventures of Cancer Girl
• Myeloma Warrior Killing the Beast
• Scoop on Dan
• Myeloma Youreloma
• Sanders
• Lorna And Micky Oureloma

I have been reading any mm blog that I can. They really do help.

***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!

Drug Free and why I can be an Idiot

I am coming back to life. Each day I feel better as my cough lessens. I must say I don't know if I would survive this world without the support of my family. Cassie and my mom were champs on being the voice of reason while my health was fleeting on Christmas Eve. I was pretty much an idiot in my response to seeking help. Cassie was very kind in her last post not to call me out too much. I still remember lying on the couch aching and burning up telling Cassie that all I needed was a cold shower and a nap and I would feel much better. Caregivers out there, you have a tough job if your patient is anything like me.

Why such an idiot? Don't you realize you have had roughly 15 months of treatment, two transplants and we're heading into cold and flu season? Cassie and I reviewed this question while I was in the hospital in order to have an action plan if my stubborn and ignorant personality comes out again while my body is crying for help. We've boiled down my naive and ignorant response as a result of years of intense physical training in sports; specifically as a Wolverine. It's not an acceptable excuse, but years of beating my body down to the point where it has zero say has definitely skewed my ability to answer the question, "How are you feeling?" We have noticed that as long as my pain or discomfort isn't extremely high, I tend to respond with I am doing fine.

Due to the recent bout with pneumonia and the flu, Cycle #6 has been derailed and I am drug free until we begin maintenance mid-January. I look forward to see how things go as we pull back the drugs and allow my bone marrow some rest from the beating.

I hope everyone had a Merry Christmas and wonderful New Year. Cheers and Domination in 2011. May it be a year of healing and great hope for us all!!!

-Phil

Myeloma Mondays #35: Lisa from Middletown, MD

***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?

• Born in North Little Rock, Arkansas - lived there for 11 years. Moved to Millstadt, Illinois - lived there for 4 years. Moved to Jefferson, Maryland - lived there for 3 years. Attended college at the Univ. of South Alabama in Mobile, Alabama for 1 year, and then to the University of Maryland, College Park, Maryland for 4 years. Then lived around the DC/MD/VA area. Always seemed to live in new subdivisions built on the edge of farm fields and supplied by well water.

Where do you currently live?

• Married and moved back to Middletown, Maryland. Same general area, Jefferson area, where I grew up.

When were you diagnosed and how old were you?

• Diagnosed in April 2003 at the age of 39, at Stage IIIA, IgA kappa.

Did you know what MM was prior to diagnosis?

• Had never heard of it.

Is there anyone else in your in family with MM?

• Not that we know of.

What led to your diagnosis?

• A year prior to diagnosis, I experienced extreme fatigue, shortness of breath, and extreme back pain. I eventually could not get out of bed. I had severe back spasms and ended up breaking 11 vertebrae in my back. I had to be taken out of my house by the volunteer firemen.

How many times were you referred before actually being diagnosed?

• I was seen by many doctors. My primary doctors prescribed pain meds until I could see a specialist. The orthopedic doctors said I pulled a muscle in my back. The emergency room doctors said there was nothing wrong and that I had a low tolerance for pain!!! They also thought I was there for the drugs. I had to beg to be admitted, and approx. two weeks later my current oncologist figured it all out.

Where have you received treatment?

• Our local hospital and The University of Arkansas for Medical Sciences, Myeloma Institute for Research and Therapy, Little Rock, Arkansas.

Explain your treatment history:

• 04/2003 - Local hospital - diagnosed. Started 1 cycle of VAD.
• 05/2003 - UAMS - Entered on Total Therapy II, non-Thalidomide arm; 4 cycles of chemo. and 2 stem cell collections. Had vertebraplasty on 11 spots on my back.
• 10/2003 - First Autologous Transplant with Melphalan 200 mg/m2.
• 02/2004 - Second Autologous Transplant with Melphalan 200 mg/m2. Complete remission.
• Maintenance Therapy - a few drugs and vitamins and Zomata infusions for bone strengthening.
• 03/2009 - Out of remission; more chemo and another stem cell collection (just in case)
• 09/2009 - Complete remission again.
• 09/2009 - Started on Velcade, Revelimid and Dexamethasone - once a week infusion for 1-2 years

Why did you or your doctor choose a specific treatment?

• UAMS claimed to have great responses from their treatments and they assured me they could help me. And I had Johns Hopkins tell me that their wasn't much that could be done!!!! So I said to UAMS, 'Lets do it!'

What has been the side effects of the different treatments?

• Geez, every side effect you can imagine you pretty much will experience: fatigue, nauseau, headaches, backaches, diarrhea, constipation, neuropathy, confusion, forgetfulness, lack of smell & taste, depression, ummmmmm,,...should I go on.

What has been the hardest thing about your MM journey?

• Seeing the fear in my daughter's eyes as she crawled into the hospital bed with me and seeing my husband cry. It was really difficult in the beginning because I was in pretty bad shape. I felt I had to hide a lot of the pain and pretend I felt better than I really did so my family wouldn't suffer.

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

• Learn, learn, learn. Know your disease and who will help you 'try' to beat it. It is going to be a very long haul and as far as I can see for right now, a forever haul. Your life has changed and it will always be this way until a cure is found. And don't get too tired of the pill popping; it is forever.

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

• It has been peaks and valleys. At first, especially before you go through much of the treatment, you're in survival mode. But after time passes, it all tends to get a little old and depressing at times. But, you do what you can, surround yourself with a great support system, and talk to your doctors and nurses about your troubles. They always have suggestions for you.

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

• My outlook on life. That it is too short and we all tend to live it in the past or future. It has taught me to live in the now and try to make the most of all my moments, good or bad.

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

• No, but I do believe where I grew up and lived might have had something to do with my diagnosis. We would always end up living in a new neighborhood built on the edge of farmland. And we always had wells for drinking water. So, maybe the chemical run-off from the fields into the well water triggered something in me!

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

• There wasn't much out there when I was diagnosed. The only thing I could do was Google MM and some medical based sites would show up. They were very gloomy and didn't have much helpful info. And everywhere I looked said I had about 5 years to live at the most. But now, if you Google MM, you'll find lots of private blogs by patients and they are not only helpful but they are also uplifting. I wish I would have had these blogs to read in my down moments in the beginning of my diagnosis!!!! Ex: Multiple Myeloma for Dummies, Lisa Ray, Managing Myeloma Life with Cancer, Nick's Myeloma Blog, Myeoma Planet, MM Support Beating Myeloma.org