Myeloma Mondays #19: Janice from Idaho

Where were you born and raised?

• Australia, East Coast

Where do you currently live?

• Idaho

When were you diagnosed and how old were you?

• Non secretory MM but only with a Bone Marrow Biopsy.

Did you know what MM was prior to diagnosis?

• Barely and I was an oncology nurse

Is there anyone else your in family with MM?

• My cousin has MGUS and it was put in remission in 2006 after taking the supplements I did

What led to your diagnosis?

• Exteme pain, inability to walk, exhaustion, trouble breathing, very low blood work, Hemaglobin of 6. Had an udiagnosed fractured spine, collapsed lungs.

How many times were you referred before actually being diagnosed?

• Once but the doctor I was seeing thought I had an overactive complaint list Trips to the ER they blew me off

Where have you received treatment?

• Boise, ID

Explain your treatment history

• 10/2004: Started on polymva, Coq10, Immune support, Liver support and cleanse, coral calcium, Vit B, Vit D (Cod liver oil) Vit C limited
• Heavy xray therapy 10 days only
• Never took chemo, I was a retired RN with Oncology experience and what was offered I knew how deadly it could be and I also knew I had 2 feet in the grave so I declined. Stayed with my natural therapy. This is not for everyone but worked for me.
• Transplant discussed but never seriously

Why did you or your doctor choose a specific treatment?

• My doctor allowed me to try my own treatment although she did not agree she was a real gem in that area.

What has been the side effects of the different treatments?

• Radiation was terrible for me and it was nearly the end of my what little immune system I had was done in. Could only tolerate 10 days as it was so intense and thru the sternum

What has been the hardest thing about your MM journey?

• The pain, and nausea and the worry from my husband

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

• Research as much as you can. Have an advocate. Insist on taking a copy of your tests after each visit, check out alternative as well as traditional treatments.
• Become an expert yourself. Never give up!!!

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

• Prayer, Meditation, Faith, Get rid of fear (takes work) Anger and grudges helps heal your soul. The will to be calm and forgiving is as important as getting the medicine.

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

• I was pretty confused and never really thought I would die, I guess someone above gave me this serenity. Just dealing with the pain and nausea kept me occupied. Had wonderful support. I am more tolerant of others.

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

• I gave chemotherapy for 3 years but that was in the 80's
• As children we had some exposure to garden chemicals but not many

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

• Cancercompass.com
• medifocus.com
• Phil's site www.mmfordummies.blogspot.com
• www.healingcancernatrually.blogspot.com
• www.healingcancernaturally.net

*Read other Myeloma Mondays by going here.

**To add your story to MM Mondays Story Time copy and paste this questionnaire (click here) and send it in an email tocancerkicker at gmail dot com. I would love to share your story! -Phil

Myeloma Mondays #11: Tim from Fairlawn, NJ

My name is Theresa Conklin and my husband Tim was diagnosed with MM in Aug 2007 and this is his story.

Where were you born and raised?

• Elmwood Park, NJ

Where do you currently live?

• Fair Lawn, NJ
  

When were you diagnosed and how old were you?

• August 2007, 2 months after my 40th birthday, Stage III, Protien 8000, 50% of plasma cells in marrow.

Did you know what MM was prior to diagnosis?

• No

Is there anyone else your in family with MM?

• No or any other cancer

What led to your diagnosis?

• Lower back pain, had tumor and compression fracture on L3

How many times were you referred before actually being diagnosed?

• Was diagnosed pretty quickly. Orthopaedic called our primary doc with the results of the MRI who in turn called my husband to come in immediately for blood work and went for BMB the next day and to the oncologist 2 days later.

Where have you received treatment?

• Hackensack University Medical Center, Myeloma Division under the care of Dr. David Siegel.
• The Valley Hospital in Ridgewood, NJ

Explain your treatment history

• Aug 07 thal/dex
• Sept 07 12 rounds of radiation
• Nov 07 Kyphoplasty to repair fracture
• Dec 07 finished last cycle of Thal/dex
• March 08 auto stem cell transplant
• Aug 08 auto stem cell transplant
• Every 3 months IV Zometa
• Aug 09 started receiving vaccinations again
• No maintenance drugs and have been off all meds since just after 2nd transplant

Why did you or your doctor choose a specific treatment (For example, to have a transplant or not have a transplant, etc.)?

• Given Tim's age and how well he responded on thal/dex we thought it was the best chance for remission. Originally our doc gave us the option to do an allo for the 2nd transplant but he said he thought the auto would be better and we decided that we didn't want to take the risk with an allo anyway.

What has been the side effects of the different treatments?

• Surprisingly my husband has a rock iron stomach and the only side effect was heartburn and neuropathy in his feet. Even through both transplants his only complaint was heartburn. Doctors would come in and laugh when Tim said he felt fine except maybe a little tired and only complaint was heartburn and that was it. All the other patients had a long list of ailments and they could barely eat and Tim ate all his meals.
  

What has been the hardest thing about your MM journey?

• Telling our kids. We have 2 children ages 15 and 10. At the time our son was 13 so we told him once we knew what was going on but in the simpliest of terms and did not go into detail. Our daughter was only 8 and she knows that he has something wrong with his blood and had to get it fixed.

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

• Do your research and don't settle for just any doctor. We were lucky enough to find great doctors right from the start who truly cared and were there for us with any and all questions. Also don't be afraid to ask questions, make a list and bring it with you to your doctor appts.

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

• Through the support of family and friends. By reading other people's stories. My husband and I are and have always been the kind of people to joke around and we continued that through this journey.
  

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

• Don't sweat the little things, spend as much time with family and friends as possible, the laundry and cleaning can wait.

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

• My husband is a plumber

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

• www.cancercompass.com

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

Myeloma Mondays #7: Liz from Chicago, IL

Where were you born and raised?

• Chicago, Illinois

Where do you currently live?

• Cicero, a suburb of Chicago

When were you diagnosed and how old were you?

• I was diagnosed Feb 8, 2010, I am 52 years old

Did you know what MM was prior to diagnosis?

• Never heard of it before

Is there anyone else your in family with MM?

• No, but my grandfather had leukemia back in the 1960s

What led to your diagnosis?

• I was out of breath back in November 2009. My primary care physician kept trying different remedies (for reactive lung disease, asthma, pernicious anemia), looking for the source of my symptoms.

How many times were you referred before actually being diagnosed?

• Twice: to a pulmonologist (who took CBC and found severe anemia) and two weeks later to hematologist/oncologist.

Where have you received treatment?

• I'm receiving treatment at MacNeal cancer center, in consultation with doctor from Rush Presbyterian.

Explain your treatment history

• 2/22/2010 - will receive my first chemo treatment. 40 mil of Dexamethasone, IV of Velcaid, and something to promote red blood production.
  

Why did you or your doctor choose a specific treatment?

• They are consulting with a group before making decisions.

What has been the side effects of the different treatments?

• I will let you know. Hopefully, they will be minimal to none.

What has been the hardest thing about your MM journey?

• Dealing with the shock, and insensitive HR personnel that thought I was making a big deal about skin cancer. (I applied for FMLA and short term disability to cover days off after my sick/vacation time runs out.)

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

• Keep going back to your doctor if you are not satisfied with their off-the-cuff diagnosis; stay in close communication with your doctor.

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

• Most of the time, so far. I lost my positive focus after talking to HR.

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

• I realize how important it is to look for the positive side of everything and to remember to laugh at the funny things.

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

• No. But my grandfather used to apply insecticides by hand to his crops, using a cloth bag.

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

• MM for Dummies
• Wikipedia

Myeloma Mondays #5: Sid from Waitakere, New Zealand

I have had the good fortune to get to know Sid over the last few weeks through email. He's a great guy and I wish him well in his unfolding story that is taking place on the other side of the globe from me. The only person I know from New Zealand is a good runner friend of mine, Nick Willis, who is looking to take the gold medal in the 1500m at the 2012 Olympics in London after finishing 2nd in Beijing.

***Are you willing to share your MM story? If so, [click here]

Where were you born and raised?

• Hamilton, New Zealand

Where do you currently live?

• Waitakere, New Zealand

When were you diagnosed and how old were you?

• June 1st 2001, age 53.

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?

• Fractured ribs, bone pain.

How many times were you referred before actually being diagnosed?

• Bone pain started 6 months prior to dx. I wasn't very pro-active.

Where have you received treatment?

• Auckland Hospital New Zealand.

Explain your treatment history:

• June 2001: Diagnosed with multiple myeloma stage III IgG kappa.
• June 2001: DVT right calf.
• June 2001 to September 2001: VAD.
• November 2001: Retinal vein thrombosis right eye. (Cleared)
• December 2001: Autologous stem cell transplant.

• March 2002: Interferon maintenance commences (3 years).

• April 2002: Plateau stage commences.
• March 2005: Retinal vein thrombosis left eye. (Cleared)
• September 2006: Plasmacytoma left humerus. Titanium rod prosthesis.

• January 2007 Thalidomide maintenance commences (14 months).
• November 2007: Relapse commenced. IgG rising, bone pain reappears.
• July 2008: Lytic lesion right humerus.
• August 2008: Second autologous stem cell transplant.
• October 2008: Titanium rod prosthesis right humerus.
• December 2008: Second plateau stage.
• June 2009: Second relapse commenced; IgG rising rapidly and 2 soft tissue plasmacytoma on skull, treatment cyclophosphamide and dexamethasone.
• October 2009: Third plateau stage.

• November 2009: 2 soft tissue plasmacytoma reappeared.

• January 2010: radiation to 2 soft tissue plasmacytomas.

Why did you or your doctor chose a specific treatment?

• Followed conventional treatment available in NZ at that time. Chemotherapy and possibly an ASCT, nothing else. We still do not have access to Velcade or Revlimid.

What has been the side effects of the different treatments?

• VAD: nausea
• ASCT: Nausea, diarrhea, mucositis, hair loss, dry skin, fatigue
• Interferon: depression
• Thalidomide: Peripheral neuropathy
• Radiation: Fatigue

What has been the hardest thing about your MM journey?

• Bone Pain

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

• Seek out other myelpma patients for information. (support group)
• Create your own myeloma support team.
• Create a myeloma and medical knowledge base.
• Maintain a positive attitude.

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

• The unconditional love from my wife Myra.
• Maintaining a positive attitude.
• Walking away from negative people, negative stories.
• Support from my myeloma friends.
• Reading myeloma survivor stories.
• Taking ownership of my illness and creating "Team Sid" for support.

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

• Spiritural. I became a reborn Christian. Why? One question. Death, what happens and where do I go when I die? Myeloma put that question in my face.

Did you or a parent work in a field with or were exposed to toxic chemicals prior to diagnosis?
No. I did live in a City that was the centre of an agricultural area.

What MM sites or blogs had you found good information from after diagnosis?
These are some of the many myeloma blogs I visit:

• Multiple myeloma for dummies. Phil Brabbs. What can I say?
• Beth’s myeloma blog. Beth Morgan. A myeloma blogger legend, blogging since 2003. Good historical information.
• Planet myeloma. Beth Morgan’s blog roll. A list of links to myeloma bloggers and a link to their latest posting updated hourly.
• Myeloma hope. Don, (Minnesota Don)Excellent information on Don’s treatment, lab tests and supplement regimen.
• Living with multiple myeloma. Pat Killingsworth. Daily postings (over 300) Pat comments on all myeloma matters giving the reader information to make their own decisions
• Beating myeloma blog. David Emerson, David advocates and uses alternative treatments.
• Nick’s myeloma blog. Nicolas van Dyk. Nik is finishing the newer aggressive approach to myeloma treatment. A must read.
• Myeloma Forums
• Myeloma Beacon

***To add your story to MM Mondays copy and paste this questionnaire (click here) and send it in an email to cancerkicker at gmail dot com. I would love to share your story! -Phil

Myeloma Mondays #3: Jodi from New Jersey

Background info:

I am 45 years old, married (20 years this year) and have 3 children. My daughter is 17 and our sons are 13 and 9. I considered myself in fairly good health. Never really sick enough to go to the doctor. Really bad about having an annual physical. I have had lower back pain most of my life courtesy of bulging discs. It should also be noted that I live approximately 3 miles from the Oyster Creek Nuclear power plant in New Jersey and have for the past 20 years.

As I look back over the past year, I can probably find a multitude of symptoms that I ignored. I was never one to go to the doctor unless it was absolutely necessary. Obviously, no one symptom was ever bad enough to get me in that office. Plus, we had other things going on. In May, 2009 my husband was diagnosed with thyroid cancer. As horrible as the "C" word was then, I remember telling him that if you are going to get cancer, that was a "good" one to get. Everything was contained within his thyroid and in June, 2009 he had the thyroid removed. He received radioisotope therapy in early August for which he was isolated from us for 5 days. His treatments were successful.

As for me, May, 2009, was also not a good month. I began having neck pain. I figured I had just slept the wrong way, twisted it, etc. I finally went to a chiropracter because I was also having lower back pain. An MRI showed that I had a 30% compression fracture at C7. At this time though, no one was suspicious of anything and called it a fluke. Because of my husband's illness, I put off doing anything. The pain was getting better, so I figured, why bother?

August, 2009, right before my husband went back to work, I took my daughter, Sarah, and myself on a short cruise to the Caribbean. She would be starting her junior year in high school that September and already had plans to travel the following summer to Germany with her class. This would have been the only time we could go and it was something I always wanted to do with her. Regardless of what people say about the teenage years, we have breezed through them with Sarah. She may be daddy's little girl, but she is my buddy. So we left the boys at home and went off to do some serious suntanning. Halfway through the trip, my lower back was in agony. Apparently I was starting to fracture on this trip and I am grateful I did not end up in a Mexican hospital.

When we got home from the trip, I made an appointment with an orthopedic. Sept, 2009, I went and had more x-rays done. It was the orthopedist who diagnosed the partial compression fractures at L2-L3. He also ordered bloodwork, another MRI and a CT scan "just to be on the safe side" was how he put it. I could tell by the look on his face that he didn't like what he was seeing.

I never made it for those tests. Three days after the orthopedic appointment, I collapsed on my kitchen floor with excruciating lower back pain. My husband had just left the house for work minutes before and I was the epitomy of the "help I've fallen and I can't get up" commercial. When I tell you that I would have rather given birth to all 3 of my kids at the same time than go through that pain, I would not be exaggerating. I literally could not get off the floor and Sarah had to call 911. Because I told them at the ER that I had an MRI and a CT Scan scheduled for the next day, they medicated me and sent me home. The pain meds helped until the next day when I went for the scans at a local imaging center. Basically I was stuck on a CT scan table and it took 3 people to get me off. I had the images done, although I still don't know how. The pain came back with a vengeance and it was back to the ER. This time, they decided to draw blood and do other tests. When my hemoglobin came back at 7.2 and a host of other labs were off, I was admitted. I received 2 units of blood that night and suddenly had a consult with a hemetologist. The next day I had a bone marrow biopsy and then my world fell apart. I will never forget the look on the doctor's face or his words after the biopsy. He simply said "You have multiple myeloma. It is not curable." Nothing like softening the blow. Dr. Gloom and Doom (his new name) left the room while my husband and I struggled with his words.

Now if this wasn't bad enough, I was still in excruciating pain from the fractures at L2-L3 and the C7 fracture was coming back to haunt me. No one really cared about the lower spine fractures because apparently the vertebrae had disintegrated at C7. I was told that I should not have been physically able to be up and walking around like I had been for months. Flash forward 8 hours later and I was in an ambulance on my way to Thomas Jefferson University Hospital in Philadelphia to have emergency neurosurgery done on my neck. Upon arrival at Thomas Jefferson, I had every test known to man done. This is when my body decided it didn't want to cooperate. My white count plummeted to 0.8 and my platelets decided to follow suit and I ran a fever of 103. There would be no surgery for me that night.

I spent the next 3 1/2 weeks at Jefferson while teams of doctors would come in and evaluate me. I had everyone from attendings and residents, to interns and students. I became a great case study for them. (I'm convinced that I'm written up in a journal somewhere.) I had to check for cameras to make sure that I wasn't on Grey's Anatomy because it sure felt that way. Because the surgery was on hold, I met with the new oncologists who started me on my first cycle of Velcade and Dex. I tolerated it well with no side effects other than the Dex rush.

Finally, on October 12 I was pronounced "healthy" enough for the neurosurgery. I underwent 5 hours of surgery and am now the proud owner of 4 small rods and 8 screws in my neck. As I told you earlier, I may never make it through airport security again. If I thought the pain in my lower back was excruciating, the surgery just brought the meaning of the word pain to a whole new level. I felt as though my head had been impaled on a pole. When I mentioned this to the neurosurgeon (AKA "the Sadist") he told me "that's because your head wasn't attached to your body." Four days later the "Sadist" discharged me home. I don't remember much about coming home. Yes, the drugs were that good. I spent the next few weeks in a hospital bed in my family room trying to recover.

November would start the 2nd cycle of Velcade. What I was very grateful for is that the doctors at Jefferson coordinated the chemo treatments with Dr. Doom and Gloom and arranged to have them done at a local hospital. That saved me a 65 mile trip each way to Philadelphia 3 days a week. After the 4th cycle of Velcade and Dex ended in late December, everything was stopped for 2 weeks pending a 2nd bone marrow biopsy. My original biopsy showed 70% myeloma cells in the marrow. This second biopsy showed that it had only dropped to 40-50%. Not as big a drop as hoped for although my IgA had dropped in half and was now 1620 down from 3300. The oncologist in Philadelphia wants the bone marrow to be under 20% in order to do a SCT. With that, we have now added Revlimid to the regimen and I continue on the Velcade and Dex. I will have another bone marrow biopsy in April after 3 more cycles of the chemo and if the numbers are good, we will be planning the SCT in May or June.

It was long recovery from the surgery. It is so hard to believe that 5 months have gone by since the initial diagnosis. I still have pain in my neck and lower back, but I am so grateful to be up and walking around. I went back to work this week for the first time and while it is going to take some getting used to, I feel productive again. I have also started physical therapy this past week. Ouch! I thought I was doing great until that torture began.

Lessons learned:

• The obvious, take one day at a time. Learn to accept help. That was the hardest for me. When you are so used to doing everything yourself, (some would say I'm a control freak) it took me forever to say "yes, I need help." I'm still working on that one, but I've come a long way. It is ok to cry and be angry. I am much stronger than I ever thought. My friends tell me that I am too stubborn to let this get me.
• I am grateful that I have had no debilitating side effects from either the chemo or the surgery. I am grateful I am able to walk. I am grateful for my husband who puts up with the Decadron mood swings. He thought PMS was bad until he encountered this! I am grateful that I have found blogs like yours to know that I am not alone in my journey. I truly have faith in the oncologist at Jefferson. He is originally from Seattle's Hutchinson Cancer Center which is a leading SCT site. So he brings all of that knowledge to the east coast.
• On the down side, I am petrified of my bones fracturing again. I am on monthly Zometa to hopefully prevent this. I am petrified of the impending SCT. I don't want to lose my hair. I still have days where all I want to do is cry.

***To add your story to MM Mondays Story Time copy and paste this questionnaire (click here) and send it in an email to cancerkicker at gmail dot com. I would love to share your story! -Phil

Myeloma Mondays #2: Tim from Essexville, MI

Each "Myeloma Monday" is going to be devoted to sharing the MM journey of folks who continue to dominate. I only wish that I would have had a bunch of these stories at my disposal when I was recently diagnosed; but regardless, I am glad they will be posted for those who will be diagnosed in 2010 and beyond.

Today's Myeloma Monday is brought to us by Tim Marciniak, 41, from Bay City, Michigan. Bay City happens to be my mother's hometown, so much love to Tim and his family!

Where were you born and raised?

• Born and raised in Bay City, MI

Where do you currently live?

• Currently live in Essexville (borders Bay City)

When were you diagnosed and how old were you?

• 8/16/09 - 41

Did you know what MM was prior to diagnosis?

• Never heard of it

Is there anyone else your in family with MM?

• No

What led to your diagnosis?

• Blooperball. I hurt my back playing and when I went to my doctor I told him how tired and fatigued I have been. He ordered bloodwork and WHAM….MM!!!

How many time were you referred before actually being diagnosed?

• Once

Where have you received treatment?

• Receive treatment in Bay City and at Karmanos in Detroit

Explain your treatment history

• 9/9/09 Started Revlimid (25mg) for 21 days then 7 days off. 4 cycles at roughly a month per cycle
• 9/9/09 Started Dex (40mg) once a week for 28 days
• 10/16/09 Started taking Lovenox shots (150mg, blood thinner) once a day
• 11/28/09 Signed up for a clinical trial
• 12/23/09 Finished 4 cycles of Rev/Dex
• 1/14/10 Started 4 straight days of Dex (40mg)
• 1/7/10 Had T-cells taken out for clinical trial
• 2/2/10 Infusion of 10 billion altered T-cells
• 2/9/10 Infusion of 10 billion altered T-cells
• 3/14/10 Will be admitted to Karmanos for autologous transplant

Why did you or your doctor choose a specific?

• Originally my doctor wanted me on a Velcade, Doxil, Dex treatment but my brother, who works at Priority Health heard about the positive results and less side effect treatment of Rev/Dex. So my doctor contacted Dr. Anderson at Harvard and we decided to go down this path

What has been the side effects of the different treatments?

• Luckily the side effects I have had have been tolerable. Each week during my cycles I would spend about 3 ½ days in the bathroom with diarrhea. I also had a blood clot in October.
• The infusion of my T-cells gave me fevers, headaches. I also developed a blood clot in my arm from my 2nd infusion of T-cells.

What has been the hardest thing about your MM journey?

• Stress it puts on my family. My wife has sometimes become a single parent to our 17 month old boy because I am laid up. I miss taking my wife out to dinner. I miss my students (I am a high school principal). I miss running and being active.

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

• Find a doctor who will listen to you and is up to date with the current research. Be careful what you read online because it can be depressing. When it comes down to it, you have to make a decision that you are comfortable with. Stay positive and find a good support group.

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

• God, family and friends. I am blessed with a strong support group. Also I enjoy reading positive articles like Phil’s blog. Online poker hasn’t hurt either.

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

• I need to give more to my community like they have given to me. I also learned that you can’t take life for granted.

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

• My mother grew up working on a farm. I also worked on a potato farm as a child. The high school I work in went through major construction several years ago including asbestos removal.

***To add your story to MM Mondays Story Time copy and paste this questionnaire (click here) and send it in an email to cancerkicker at gmail dot com. I would love to share your story! -Phil

MM Story Time #1: Kevin from West Lafayette, IN

The following journey is another one that I hold very close to my heart. This is the story told by Kevin's wife who has been the caretaker through this experience. Kevin was diagnosed at 25 and is now over four years out and still in remission. Thanks to modern science they now have a beautiful son!

Where were you born and raised?

• Reynolds, Indiana

Where do you currently live?

• West Lafayette, Indiana

When were you diagnosed and how old were you?

• August 2005, 25 years old

Did you know what MM was prior to diagnosis?

• No and neither did my PhD, Cancer Biologist Wife

Is there anyone else your in family with MM?

• Not that we know of

What led to your diagnosis?

• Broken lumbar vertebra

How many times were you referred before actually being diagnosed?

• None, the neurosurgeon removed tissue from the vertebra and was diagnosed a couple of days later. Our current doctor also did a hip biopsy to confirm multiple myeloma not a plasmacytoma (myeloma in one site).

Where have you received treatment?

• Indiana University Hospital/IU cancer center (Indianapolis, Indiana)

Explain your treatment history:

• 10/2005: Started Dex and Zometa once a month (for a good 2 years)
• 11/2005: Dex/Thalidomide (Revalmid and velcade were still in clinical trials)
• 4/2006: Finished 3rd round of Dex/Thalidomide
• 5/2006: Autologous Transplant #1
• 5/2006-current only taking zometa (4 mg) every three months. In remission since transplant.

Why did you or your doctor choose a specific treatment ?

• At the time, it was the standard of care and in my mind (cancer biologist wife) the best treatment option. Loved and trusted the physician. Would have done a tandem transplant had his sister been a match.

What has been the side effects of the different treatments?

• Zometa made him flu like for the first few times he got it. He then started to take the entire bag of saline that they also administer with the zometa and has zero problems since. This was recomended by one of the nurse at the infusion center.
• Dex made him gain 40 pounds in 4 months. The transplant went about as smoothly as possible. In hospital for 13 days!!!

What has been the hardest thing about your MM journey?

• Just the fact that at 25 he isn't suppose to have this disease!!! Also, being married for 1 year, about the start a family and then having to put our lives on hold for a year. Then having to use IVF to have children was hard.

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

• Do your research and find a physician you trust. Our first doctor sucked!

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

• As a caretaker, remembering that it is okay to be pissed/sad/frustrated etc. content sometimes. You don't always have to be happy. The negative thoughts will creep in but trying to look on the brighter side of life helps. Also, live each day like you won't have another (or something in that realm)

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

• Life is short, live it well

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

• My husband lived on a farm that was sprayed with insecticides and his mom lived on a farm growing up.

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

• MMForDummies and Nick's myeloma blog have been interesting to read. The treatment for myeloma has changed even in the last 4 years.

***To add your story to MM Mondays Story Time copy and paste this questionnaire (click here) and send it in an email to cancerkicker at gmail dot com. I would love to share your story! -Phil

Share your story?

I can honestly say Cassie and I extract a big chunk of our strength and positive outlook from the stories of others living with MM. When I was first diagnosed I learned about a Michigan State football player who I played against that was diagnosed at age 25 with a son on the way. That guy is now six years out from transplant and there is still no trace of the disease. I think about him and his family constantly. His success is my hope.

So in light of our dependency to lean on the stories of others to glean hope, I thought it would be fun and educational to have MM patients allow me to post their stories on this blog. If you are dominating MM right now and wouldn't mind sharing your story please post a comment or shoot me an email to pbrabbs at hotmail dot com. I'll send you some basic questions and we'll go from there!

Let's continue to journey together....