Monday, March 29, 2010

Happy Apheresis Day!

Stem cells are being collected as we speak. A pleasant surprise: an old friend of mine from high school is our nurse! We shot a video so you can see just how uneventful this process is, and just how pregnant my face is starting to look.

video

Myeloma Mondays #8: Judy from Flint, MI

Where were you born and raised?

  • Detroit, MI
Where do you currently live?

  • Flint, MI
When were you diagnosed and how old were you?

  • December 2005, age 67, Plasma Cell Leukema, IGG
Did you know what MM was prior to diagnosis?

  • Never heard of it.
Is there anyone else your in family with MM?

  • No
How many times were you referred before actually being diagnosed?

  • None. I was fortunate to have a fantastic internist who insisted on full body x-rays when my ribs still hurt after 6 weeks. MM showed up on the x-rays.
Where have you received treatment?

  • University of Michigan, with supplemental support at Genesys/Hurley - Flint
Explain your treatment history:

  • 1/2006: 4 day cycle VDT-PACE
  • 2/2006: 2 cycles VDT
  • 3/2006: 4 day cycle DT-PACE
  • 4/2006: VDT
  • 5/3/2006: Tandem transplant #1
  • 6/2006: VDT
  • 8/18/2006: Tandem transplant #2
  • 9/2008-9 RVD cycles every 3 weeks
  • 2010: Rev, Velcade, Dex and Cytoxan

Why did you or your doctor choose a specific treatment

  • I had plasma cell leukemia, where the plasma cells migrate to the blood stream, a very rare and aggressive form of MM. Dr.J. called me to begin immediate and aggressive treatment the same evening he first saw me. An aggressive form called for aggressive treatment. I was in such a daze I don’t think I really understood what was happening. Fortunately he did. This form of MM had a very short prognosis, which I have long passed. Don’t believe any life line prognosis, everyone is different.

What has been the side effects of the different treatments?

  • My first round of chemo caused a great deal of nausea, fatigue and hair loss. The second round was much easier without the nausea and less fatigue. My worst side effects are usually stomach problems and fatigue. Post transplant there was loss of appetite for a short time and extreme fatigue.
What has been the hardest thing about your MM journey?

  • Accepting that I can no longer do as much as I would like and having to pace myself accordingly and letting other people do things for me.
What are the top lessons learned that you would want a newly diagnosed MM patient to know about?

  • Find a doctor you can trust and have faith in. If your doctor is not a myeloma specialist get a second opinion from one.
  • Find a good support group.
  • Realize your life will change but many good things will happen.
  • Enjoy every moment you can.

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

  • The wonderful support of my husband, family and friends.
  • Talking with other survivors who deal with the same issues and are positive.
  • Exercise.
  • Founding a support group to help others.

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

  • The realization that life is short made me learn to appreciate every thing every day. Try to spend more time with the people I care about.

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?

  • IMF and MM Research Consortium are very good reliable sites.
  • The Acor list serve for myeloma tells personal stories and you can sometimes pick up interesting points but you have to be careful because these are not experts.
  • I did not look at MM on the computer until after my second transplant and the tough stuff was behind.
***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

Friday, March 26, 2010

IMF Event - Tonight!

I was asked to post the following information by the IMF. The Conference Call is tonight if you would like to attend. There are other ways to participate as well. The people at IMF rock. Whether it is IMF, MMRF, Myeloma Beacon, Cancer Kicker, Tackle Cancer Foundation, whatever....let's get involved and contribute the conversation!



SUPPORT EQUAL ORAL DRUG REIMBURSEMENT – IMPROVED RESEARCH – ACCESS TO CLINICAL TRIALS
  • Specific local legislation is also pending in several states! The 21st Century Cancer
  • The Cancer Drug Coverage Parity Act (H.R. 2366)
  • ALERT (Access to Life-Saving EarlyDetection, Research and Treatment) Act (S. 717)
  • The Access to Cancer Clinical Trials Act (S. 488/H.R. 716)
WHAT YOU CAN DO: Join your fellow myeloma patients, family members, doctors and nurses who have already given interviews, testified and met with their legislators. If you have been denied equal
“The IMF arranged meetings coverage of oral therapy… for me with my Congressional If you have been denied coverage Representatives. It was while participating in a clinical trial… easier than I expected and empowering to be heard.”If you are willing to tell your story, send us your name and contact Jerry Walton

You Are Invited To Take Part In A CONFERENCE CALL
  • Friday, March 26, 7:00 pm EDT USA
  • Toll Free: (866) 393-4674
  • Conference ID: 56763901
  • Ask questions, Raise issues, Hear from other myeloma patients

My Lower half ain't so happy

Yesterday my labs confirmed that I am officially neotropenic...meaning my white blood cell count (WBC) is close to zero. What that means is I get to wear a sweet mask if I go out into public and that I avoid every sick person like the black plague.

It's been months since I have had any side effects or issues with treatments. I am currently dealing with a couple of issues that make me realize that on the MM path, remember to count your blessings when things are "normal."

First, I feel like this whole experience has brought me to appreciate the hard work of all the pregnant women who have gone before, are pregnant or will one day take the plunge. Sometimes I feel like a pregnant woman, although our house probably is only big enough for one pregnant lady at a time.

Here are two recent pain points:
  1. Lower Back Pain - I was warned of bone pain with the neupogen shots, which I shrugged off after 4 days of taking shots with no side effects. Yesterday was different. I have a shocking pain that comes in waves in my lower back. I have no clue what back labor feels like, but I think this is the closest that I will ever get to it.
  2. Fissures - Hopefully this isn't too much information for you to take with you into your weekend, my apologies if it is. The only relief I can get from this excruciating pain is when I think of Jerry Stiller's comment in Zoolander: "It stings me like a fissure in my a**". Again, I will never feel the pain of childbirth, but shoot, every morning I am reminded that childbirth is not for me!

Thursday, March 25, 2010

I've lost a friend, that I have never met...

It was just announced that the Elijah Alexander, Founder of Tackle Cancer Foundation, former NFL football player, father, husband and MM patient has moved on from this world. I am fighting back tears for his family's loss. Here's an article on his passing.


Elijah went the extra mile to track me down once he learned about my battle with Multiple Myeloma. I am lost for words. I feel like I have lost a friend that I have yet to meet. I cannot imagine how his family and friends are taking the news. Thoughts and prayers coming from the UMHS Cancer Center this morning.

Tuesday, March 23, 2010

BMT? SCT? WTH?

An awesome new friend that I gained through this MM journey suggested that I explain what the crap a bone marrow or stem cell transplant is, commonly called a BMT or SCT. I often forget that people don't eat, breathe and live maroon ribbon disease like Cassie and I do, so I often assume that everyone understands what all this means. My bad.

The good and bad thing here is that I am a dummy when it comes to this stuff. Good because I will be able to explain things in simple terms. But bad because I probably misspeak 10-20% of the time so you may get some wrong information. There is a reason why we called our blog MM For Dummies and not MM for Really Smart people. If ONLY Cassie were blogging, we probably could have gone with the latter.

First, here is a simple timeline of the BMT activity:
  • 3/16: NeoStar Catheter placement
  • 3/17: Cytoxan - Chemo
  • 3/18: Phil doesn't remember this day (thanks Ativan)
  • 3/21: Daily neupogen shots begin
  • 3/28: Last neupogen shot
  • 3/29: Stem Cell Collection (my stem cells), also called apheresis
  • 4/4: Christ is Risen, Hallelujah.
  • 4/5: Receive Melphalan - Chemo
  • 4/6: Phil checks into the hospital for a minimum of 15 days
  • 4/10ish: Phil's cells die
  • 4/10ish: Phil receives his Stem Cells back
  • 4/11+: Phil recovers until Phil is Risen, Hallelujah.
  • 2 months later (Take 2): Phil goes through this process again starting with Melphalan.
So what is a BMT and what will recovery look like? For most, the bone marrow transplant will take place only once and if they slip out of remission five years down the road they may go for a second. In my case and for probably 99% of the folks seen down at UAMS, we will be doing a tandem (back to back) transplant, roughly 60 days apart.

Here's how I describe the process for my autologous (my own stem cells) transplant/s. A BMT or SCT is not a surgery, though that seems to be a common misconception. They give me a nasty drug that I just learned is mainline therapy for fighting breast cancer, they start shooting me up with a crazy drug/protein that pump fakes the body out to produce an overabundance of stem cells and pushes the excess into my blood stream, they connect me to a machine where they pull blood out and dump it back into me all while collecting about 6 million of those baby stem cells, they give me the big gun chemo to kill everything and admit me the next day into UMHS, my old under-performing cells get dominated in roughly five days, they give me back a bag or two of my baby stem cells who have missed me, my counts start to return to safe levels during my two week stay in the hospital and they eventually kick me out and tell me to return home and live in a bubble now that I will essentially have no immune system, but hopefully also no cancer and lastly, if that wasn't fun enough the first time, let's do it again to complete the tandem. The End.

So now that folks understand that I am NOT about to undergo a surgery, the next question is what does the recovery timeline look like? First, for a single transplant, I typically hear that the majority of people are out of work for 3-6 months, closer to 6 although the line of work and how you feel are trump cards. For me, expect a six month recovery with a tandem..which of course will be subject to change based on whether I complete a tandem and how my body responds to the above process. My energy levels should be shot for a while and since I will be rebuilding an immune system and will be extremely susceptible to the most innocuous of germs , I will be chillin' like a villain in my house for a long while, trying to limit my exposure to infections that would send me back to the hospital. I hope to return from the ashes just in time for the 2010 Michigan Football season and the Big House Big Heart Run I ran last year.

So was that helpful? MM experts....feel free to humble me with correction where I have mis-spoken. I am new to all of this... -Phil

And here's Cassie's edit to Phil's original post:
To keep it even simpler, I'd just say:
1. They give you drugs to make your marrow over-produce stem cells and push them into your blood.
2. They pull your blood-and-stem-cells out, collecting the stem cells and replacing the blood. (A simple and painless but time-consuming process.)
3. They give you high dose chemo to kill everything.
4. They give you back your stem cells, which will graft back into your marrow, creating a new immune system over the next few months.

Monday, March 22, 2010

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

Sunday, March 21, 2010

It's not the Dex...this time

I was awaken at 3:03 AM with all guns a blazing ready to take on the world. I haven't done this since my Dex days and I want to say it feels good! I have sent a number of emails, posted a bunch of comments on Facebook and even got a blog post out of it!

I feel like I haven't updated folks lately on my whereabouts and that's probably because I still can't even recall what happened on Wednesday and Thursday. I am blaming the Ativan for inhibiting my recollection of those days events, rather than the Cytoxan. Although I am open to blaming chemo drugs for doing bad things :)

We are about a week away from stem collection and two weeks away from transplant. My neupogen shots kickoff today and I am excited to start producing a bunch of baby stem cells which hold my future.

I have been harboring some deeper emotions lately, mainly do to having to prepare and give a TEDx talk at the University of Michigan. They did a recording of my talk and they will present it at the event on April 10th, which actually coincides with the day I'll probably get my little stem cells back and also the big Relay for Life event on campus.

As for the emotions, I won't go into them in too much detail because I honestly haven't gone into them in too much detail myself. Given that I am so go-go, when I pause to consider being ejected from this world and leaving my son behind it just rips my heart to pieces. The thought of my little guy, who is now four, not recalling memories of me nor having the opportunity to play soccer together and go for runs is unbearable to think about. I find it a little healthy to ponder....

It's very easy to be inpatient with Ocean (and Iris who is 2 for that matter) and forget the joy that is available in the present moment with them. Our kids are truly amazing and I look forward to many more years with them.

So I started out talking about Dex and then finished with my kids. Sometimes I feel like my kids are on dex full-time! The End.

Here's a photo of Ocean looking "Dexy"

Tuesday, March 16, 2010

Updates from Infusion Room 5

Happy St. Patrick's Day! Or, as is the case here, Happy Blue Hair Day! Phil had some friends over last night and three of them dyed their hair to mark the commencement of mobilization. See the video at the bottom of this blog to see them in action!



Yesterday Phil got his Neostar Catheter placed. Beth has a picture of one on her blog, and Phil may want to show his off later on. We'll see. The cath will allow for easier stem cell collection, blood draws and chemo administration and this is also the site through which the stem cell transplant will happen. He said it's not too uncomfortable... and the creepiness factor is sort of over-ridden by the knowledge that he won't have to get poked so many times every week.

Today is Phil's Cytoxan infusion which is an all-day affair. We were under the impression, through no one's fault but ours, that the Cytoxan would be a simple infusion, we'd go home and life would proceed as normal until collection. However, it turns out he'll be on some heavy anti-nausea meds for a few days afterward and will likely be tired and somewhat out of commission until the weekend. His counts will also begin to drop at that point. We're at infusion right now and Phil received his Compazine, Ativan and Zofran to combat any nausea before it even begins. They just hung his Cytoxan, which will take two hours, and then we'll stay here for hydration well into the evening. Because of all the meds Phil is, in his words, "Soooooo tiiiiiiired." So he's cashed out while I pay bills, eat bagels and catch up on my Pottery Barn catalogs.

Tonight Phil will be sent home with a pump that is connected to his catheter. The pump will infuse fluids into his system throughout the night, and I'll have to wake him up every two hours to use the bathroom, since it's dangerous for Cytoxan to sit in your bladder. I got a tutorial on how to work and troubleshoot the pump since Phil will likely be too sleepy to notice if something goes wrong (which is unlikely). So between that and yesterday's class on how to flush his lines-- which we'll do three times a week-- and change his dressing-- which happens once a week-- I feel like a pro.

I'm heading home for lunch and to try and get the kids down for a nap in about an hour, then coming back to the hospital for the rest of the day. I asked the nurse if they could bring in another bed so I can take a nap too and she just kind of giggled. As if I was joking. Oh well. Thank goodness for free bagels and internet.

Updates to come as events warrant!


video

Tuesday, March 9, 2010

There's no place like Dr. J's myeloma clinic... click click click.

We had our last meeting with our myeloma clinic team today before we're passed on to the Bone Marrow Transplant team tomorrow.

It was bittersweet.

Our good friend Zak blogged about this very thing recently, and while our journey is far from over and we will reconvene with Dr. J and his trusty sidekick BN after transplant, this marks the end of a significant chapter in the Cancer Book. Induction is done, and we're now entering the next phase. It feels... weird.

Dr. J had wonderful things to say to us and we left, as we always do, in awe of not just his competence and knowledge and determination, but also his compassion for and sense of responsibility toward people suffering from myeloma. Remission is not good enough for him, as it shouldn't be good enough for any of us who are touched by this terrible disease. I respect Dr. J as a physician and also as a person. As my aunt Tweetie would say, he's a good egg.

BN, P.A., is awesome too. I won't say too much about him on here because everything we say on this blog always gets back to him somehow (hmmmmmmm...) and I don't want him to feel uncomfortable. But basically he's single-handedly made the last five months not suck. He's the best of the best and we lub him somethin' awful.

So now we've been turned loose to the bone marrow transplant team. I wonder if they know what they're in for? Cackle, cackle...

I also wanted to mention this article. I'm sure you myelomians (myelomiacs? We really need a cool name.) have seen this but I wanted to post it here for anyone who hasn't yet read it. Because while hope is absolutely necessary, so is the realization that this cancer is not like other cancers and something needs to be done. My kids need their dad and ten or fifteen or even twenty years of remission simply isn't good enough for a 29 year old. Awareness is key, people. As I've said in the past, I'll chill out a bit when spell-check recognizes myeloma as an actual word. So anyway, Kathy Giusti of the MMRF is a rock star and this article is a must-read for, well, everyone.

I am going to actually try and get in bed before 10:00 tonight. I find myself staying up too late once the kids are in bed because the house is just so darn peaceful when the preschoolers aren't brawling. I hate to waste all that quiet on crazy pregnancy dreams. But sleep will be hard to come by soon, so sleep I must.

Pleasant dreams to all of you, and we will update later this week after Phil recovers from his bone marrow biopsy. (He really doesn't mind them. I've never had one but I think know I'd ask for the epidural.)

Monday, March 8, 2010

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:
***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

Saturday, March 6, 2010

Transplant, Facebook, Buckeyes & more..

This our longest video post to date and it's worth the watch. At the end of the video are now four year old son, Ocean, tells everyone who he thinks will beat Multiple Myeloma. Will it be Spider Man, Batman or Daddy? You'll have to watch the whole video to find out!

Also, there is a talk-o (the verbal equivalent of a typo) when Cassie refers to Cytoxin. She meant to say Melphalan. Oops.

Sign up for the CancerKicker Facebook Page here: http://www.facebook.com/cancerkicker

If you already signed up, let us know your School Colors:

video

Thursday, March 4, 2010

Facebook Page Launched!

I have grown to enjoy and appreciate the knowledge, support and encouragement that is offered through the blog-o-sphere. I have connected with so many great people who are marching forward with MM and I feel like the community continues to grow.

The one thing I don't like about blogs, is that they are not designed to allow for much interaction. Since last summer I have been dreaming up a communication platform that will allow people to share their day to day experience and interact with one another. Then it hit me....that's what Facebook does! So I created a Facebook page!

Go here to join..there's already 1,200+ signed up: http://www.facebook.com/cancerkicker

Wednesday, March 3, 2010

A quick note... (from Cassie)

Thank you so much, everyone, for such kind words and sincere empathy after my last post. Things are looking up the last few days, probably due to the recent emergence of sunshine, my brand-spankin' new iron supplements (anemia + pregnancy hormones + myeloma = recipe for emotional disaster) and the birth of my BF's third child (a boy!). I appreciate you all-- we are so fortunate to have such a wonderful network of people to lift us up when we're struggling.

Ocean and Phil were chasing each other around the house after dinner tonight and Iris was still working on her fourth helping of dinner. (This is not atypical.) Iris began chanting, "Go Ocean Go! Go Ocean Go!" Ocean, without stopping, exclaimed, "Thank you, Iris! Your encouragement helps me so much!" And then he actually started running faster.

Aside from the fact that I don't know many four-year-olds who speak this way, it made me think of you all. We run faster when we know there are people behind us.

Lots of mid-week love from us to you.

Monday, March 1, 2010

Chemo...No more

Tonight was my last night of chemo since I started 147 days ago (10/6/09). The anticipated four cycles turned to seven and I am happy to move on. The results have been strong to quite strong, and I am ready to nail down this bone marrow transplant.

For old time sake I decided to go with a video blog....even with this cold that is stealing my voice:


video

Myeloma Mondays #4: David from Chagrin Falls, OH

Where were you born and raised?
  • Cleveland, Ohio
Where do you currently live?
  • Chagrin Falls, Ohio
When were you diagnosed and how old were you?
  • 2/14/94- age 34, non-secretory-
Did you know what MM was prior to diagnosis?
  • no
Is there anyone else your in family with MM?
  • not that I know of
What led to your diagnosis?
  • Broken fifth cervical vertibra
How many time were you referred before actually being diagnosed?
  • None
Where have you received treatment?
  • University Hospital of Cleveland and the Burzynski Research Clinic
Explain your treatment history
  • 3/95- five cycles of VAD
  • 9/95- 2 cycles of cytoxan
  • 12/95- pbsct
  • 10/96- local radiation
  • 9/97- second relapse-
  • 11/97- began antineoplaston therapy
  • 4/99- complete remission
Why did you or your doctor choose a specific treatment?
  • VAD, cytoxan, pbsct was considered standard, aggressive therapy at the time-
What has been the side effects of the different treatments?
  • extensive nerve damage, chemobrain, irritable bladder, GI problems-
What has been the hardest thing about your MM journey?
  • cancer diagnosis originally, side effects- I am okay now.
What are the top lessons learned that you would want a newly diagnosed MM patient to know about?
  • Life is all about priorities.
How have you been able to stay positive and encouraged in your MM journey?
  • Creating the Galen Foundation, launching beating-myeloma.org has been a tremendous help to me.
After being diagnosed... What perspective was changed the most?
  • My view of life has changed in that I have changed my priorities.
Did you or a parent work in a field with or were exposed to toxic chemicals prior to diagnosis?
  • I worked in a commercial printing plant.
What MM sites or blogs had you found good information from after diagnosis?
  • MMsupport, Margaret's Corner and beating-myeloma.org of course.
***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