Monday, May 31, 2010

Myeloma Mondays #18: Ed from Manhattan Beach, CA


Where were you born and raised?

  • Racine, Wisconsin
Where do you currently live?

  • Manhattan Beach, California
When were you diagnosed and how old were you?

  • July 2006. Age 53 Beta-2Microglobulin: 3.6 (.1 into Stage 2). Significantly, I an a non-secreter (my cancer cells do not secrete M-Protien, meaning my disease progression is difficult to measure). Periodic biopsies are required.
Did you know what MM was prior to diagnosis?

  • No. Probably would have thought it was a misspelling of melanoma.
Is there anyone else your in family with MM?

  • No
What led to your diagnosis?

  • I experienced recurring pain in my ribs. Thought it was sports related. I heard a bone “snap” in my rib during a massage which led me to an orthopedist for evaluation. He looked at my x-ray, turned green, and told me that there “may be some pathology”. Subsequent x-rays confirmed the MM diagnosis.
How many times were you referred before actually being diagnosed?

  • First time.
Where have you received treatment?

  • All local in Southern California.
Explain your treatment history

  • August 2006: Dex. 40 mg/day. Twice/week. Zometa monthly.
  • Sept 2006: Velcade + Dex. Twice/week. Two weeks on, one week off. 7 cycles.
  • Maintenance therapy: Since December 2006: Monthly Zometa. 40 MG Dex once/week.


Why did you or your doctor choose a specific treatment?

  • My local oncologist served as a guide. I scheduled appointments with two local specialists, Dr. Mark Vescio and Dr. James Berenson. They were both knowledgeable and caring. But that was where the similarity ended. Vescio advocates autologous transplant. Berenson is well known for his opinion that the transplant does nothing at best and can be very harmful at worst. As most MM patients know, there is no right answer….so both of them are right. I went back and forth several times over which course to follow. Ultimately, I scheduled a consult with Dr. Brian Durie, who trained both Vescio and Berenson. Durie confirmed that the transplant was still the treatment standard and felt it should not be ruled out. However, he noted that patients response to Velcade and/or Revlamid was encouraging enough that there would be no major downside to trying them out before electing to go the transplant route. The key point that affected my decision was Duries’s observation that a transplant later would be just as effective as a transplant now. If less invasive treatment was not effective or if I relapsed quickly, transplant remained an option. So the Velcade/Dex regimen began and, thankfully, I responded well. My Beta-2 Microglobulin fell to trace amounts within 5 months. I have stayed in remission ever since following a continuous maintenance regimen of weekly dex plus monthly Zometa.

What has been the side effects of the different treatments?

  • Zometa: First dose of Zometa resulted in flu like symptoms for about a day. I’ve been taking it monthly ever since and have had had no further issues.
  • Velcade: I tolerated Velcade extremely well. First dose caused some discomfort (fatigue, constipation) but it was short lived. Subsequent doses were pretty easy for me. No nausea. Some fatique. Very light neuropathy. There were about 3 days during treatment that I found myself falling asleep at my desk at work. On those days, I left work and played golf…..thinking that I did not want to upset my sleep cycle by sleeping all day and that putting one foot in front of the other would keep me awake. It actually worked out well for me.
  • Dex: HATE IT. Who doesn’t. I get crabby, voraciously hungry and feel bloated. Yes, ladies, it is very much like PMS, except it is every week. On the positive side, I have not gotten puffy or gained a lot of weight. I try to follow a low-salt diet, which I believe helps. It was also noted that my blood sugar spikes on days that I take Dex. We tracked it with a diabetic monitor for about a month and my sugar drops on quickly when the dex wears off. So it was determined that no treatment was required.

What has been the hardest thing about your MM journey?

  • Honestly…it is the Dex. But, compared with others, this is a very minor complaint. I consider myself a lucky cancer patient….if there is such a thing. Also, since I do not secrete M-Proteins, I endure semi annual bone marrow biopsies. They are literally and figuratively a pain in the ass.
What are the top lessons learned that you would want a newly diagnosed MM patient to know about?

1) Be encouraged by the speed with which new therapies are being discovered and made available. MM is much more manageable and treatable than it was just two years ago.

2) Talk to people! Patients. Doctors. Research orgs. Knowledge is power

3) Be VERY VERY careful about what you read on the web. 90% of what you see if out of date. If you go by this data, you’ll think you are in far worse off than you may be.

4) Remember that MM is different for every patient. What fails for others may work out for you. Also, be aware that the experts may not agree on how to treat you, but even though they disagree, they may both be right about things. Seems counterintuitive, but it is true.


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

  • It has been relatively easy for me because I am not suffering any disease related symptoms. I’m living a very normal life and that makes it easy to stay positive. I strongly recommend setting up a blog. It is very therapeutic.
After being diagnosed... What perspective was changed the most?

  • This sounds bad, but I’ve become rather impatient. I think that happens to a lot of cancer patients. I can’t stand waiting for things. I also vowed that I would never exploit the cancer (for such things as “officer, I know I was speeding, but I have a cancer that is usually fatal….” I think that would cause bad karma.
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, MMRF, Nick’s Myeloma Blog
*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

Monday, May 24, 2010

Myeloma Mondays #17: John from Windsor, Ontario, Canada


Where were you born and raised?

  • Born in London, Ontario, Canada. Raised in Essex, Ontario (approx. 20 miles from Windsor, Ontario)

Where do you currently live?

  • Windsor, Ontario - with my wife and 13 year old daughter

When were you diagnosed and how old were you?

  • September 2009, I was 42 years old with IgA Kappa myeloma.
Did you know what MM was prior to diagnosis?

  • I did not, but my wife had an idea.

Is there anyone else in your family with MM?

  • No, and there has never been anyone with cancer

What lead to your diagnosis?

  • July 2008 – hurt my back at work (I’m an elevator mechanic) seemed to get better, and then by Christmas 2008 I was having pain again. By the time my birthday came around in January 2009, I was having trouble walking and x-rays and CT scan showed a tumour at the 2nd thoracic vertebrae. I was immediately booked for surgery.
  • January 30, 2009, I had a laminectomy of this vertebrae to remove a plasmacytoma of the bone which had cracked the vertebrae in two spots. See below for the rest of the story.

How many times were you referred before actually being diagnosed?

  • Hard to say the plasmacytoma was diagnosed right away, but they didn’t diagnose the MM until September 2009.
Where have you received treatment?

  • Windsor, Ontario & London, Ontario
Explain your treatment history:

  • 07/2008: hurt my back was given pain killers
  • 01/2009: removal of bone plasmacytoma
  • 02/2009: first visit to Cancer Centre for consult with radiation oncologist
  • 03/2009: 20 radiation treatments begin
  • 03/2009: met with Hematologist/oncologist for consult
  • 04/2009: bone marrow biopsy – results showed IgA kappa light chains and proteins consistent with plasmacytoma – was told no treatment necessary and to come back in November, 2009.
  • 07/2009 – baseline MRI of thoracic spine booked by radiation oncologist, there was nothing remarkable so come back in October.
  • 07/2009: was having some rib pain, but attributed to being back at work full-time and doing more around the yard.
  • 08/2009 – rib pain still present and my legs felt off – went for some x-rays & MRI of spine – there were more lesions on my spine in various spots.
  • 08/2009 – appointment with hematologist and blood work – the doc didn’t think it was myeloma yet, but she wanted to be sure…well it was myeloma, and it wasn’t confirmed until September, with the kappa/lambda ratio being 17.92 (up from 4.56 in April), and the IgA protein was 9.88 (up from 2.2).
  • 09/2009: started on pulse Dexamethasone 40mg for 4 days 3 x per month (was down to only 4 days per month in December and January, then stopped getting ready for transplant)
  • 09/2009: started monthly Aredia treatments
  • 10/2009: started Thalidomide 50mg daily (stopped mid February getting ready for autologous stem cell transplant)
  • March 4/2009 – had IV catheter inserted in Windsor and started Neupogen injections
  • March 8/2009 – harvesting of peripheral stem cells (London, ON) - collected enough the first day so no more Neupogen (Yeah!)
  • March 15/2009 – admitted to hospital in London, ON for high dose Melphalan (will stay in hospital until it is safe for discharge)
  • March 17/2009 – Day 0 – and I get my stem cells back (transplant)
  • March 23/2009 – Day 6 and finally my WBC counts are ZERO
  • March 28/2009 – counts are on the rise
  • March 30/2009 – counts are high enough to be discharged (whole hospital stay was 2 weeks plus ½ a day)

Why did you or your doctor choose a specific treatment?

  • Chose the above treatment because the doctor said “You are young and healthy (other than the myeloma), and you only have one of the CRAB criteria (bone involvement) so let’s be aggressive, and maybe you can stay in remission for a longer period, and there may be a cure if you relapse. Just as a note I had achieved a complete remission by December on the Thalidomide and Dex.

What have been the side effects of the different treatments?

  • Dexamethasone – weight gain and bloating
  • Thalidomide – a little neuropathy
  • Aredia – a little bone pain, but not too bad
  • Neupogen – bone pain, but I was told by the aphaeresis nurse, that means it did it’s job.
  • Melphalan – a lot of gastric upset and hair loss (I shaved my head)

What has been the hardest thing about your MM journey?

  • Always having a black cloud over your head…when is this awful disease going to show its ugly face again.

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

  • Educate yourself, be your own or have someone be an advocate, and don’t be afraid to ask questions, it’s your life.
How have you been able to stay positive and encouraged in your MM journey?

  • Good support from family and friends and just keeping in mind that you can’t cross a bridge until you get to it, so take one day at a time.

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

  • Knowing your life can change at any moment, life is short

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

  • My mother’s family were all born and raised in farm country. I grew up in the same area (played in the ditches as a kid), and I have been exposed to different petroleum products in my work.
What MM sites or blogs had you found good information from after diagnosis?

  • MMforDummies and the ones on the side of your page, and Myeloma Planet.
*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 to cancerkicker at gmail dot com. I would love to share your story! -Phil

Wednesday, May 19, 2010

My first "yog" and Day +30 Test Results

Dr. J called to give me the results from Day +30 after my first bone marrow transplant and to say congrats on little Ruby. Dr. J confirmed that we will be moving forward with a second (tandem) transplant....timing TBD. Since my last vlog I have left my zip code for the first time in 9 months to visit one of my four sisters, completed a light jog, sent out 100 more Cancer Kicker - dominate bracelets (thanks Tam!) and watch my parents dominate my mulch and their backs. Watch the video below for my whereabouts and my recent test results.

video

Here's a nice shot of me panting like a dog after my three mile yog. It felt good to dominate my body....I am sick like that.


Hold the line and keep those feet moving!

-Phil

Monday, May 17, 2010

Myeloma Mondays #16: John from Oregon

Where were you born and raised?

  • I was born in San Francisco. I lived in California until I was 32.

Where do you currently live?

  • Hood River, OR for the last 31 years.

When were you diagnosed and how old were you?

  • 12/7/2007 – age 61, IGG Lambda. BMB showed 26% plasma cells, IGG was 6600+ with an M-Spike of 4.5

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?

  • Routine physical prompted by anemia, which was detected intermittently at Red Cross Blood Drives over the course of the two previous years.

How many times were you referred before actually being diagnosed?

  • None, I received a definitive diagnosis within 10 days of the first blood test.

Where have you received treatment?

  • Initial oral chemo prescribed by a local hematologist from Mid-Columbia Medical Center’s Celilo Oncology.
  • Then, I went to the Seattle Cancer Care Alliance for a Stem Cell Transplant.

Explain your treatment history

  • 01/2008: Started Thalidomide/Dexamethasone
  • 06/2008: Completed 5 cycles of Thal/Dex
  • 07/07/2008: Cytoxan, Etoposide, Dex – pre-transplant chemo
  • 08/25-08/28/2008: High dose Melphalan -- Autologous Stem Cell Transplant
  • 08/28/2008 – 03/2010: In remission without any treatment

Why did you or your doctor choose a specific treatment?

  • My wife and I did our own research on treatments. Once I began the thal/dex, I asked for a referral to consult with the SCCA. I made the SCT decision independent of my local oncologist. The SCCA has an excellent reputation. I chose to do the SCT while still healthy.

What have been the side effects of the different treatments?

  • Peripheral neuropathy from the thal/dex treatment continues to annoy me. I also experienced constipation, fatigue, and emotional ups and downs from these oral drugs.
  • Nausea, diarrhea, joint pain, hair loss, chemo brain, fatigue, profound indifference plus aversion to food and drink, from the SCT. Most of this came and went within six weeks; the chemo brain still occurs intermittently.

What has been the hardest thing about your MM journey?

  • It disrupted my wife’s and my life, but we rolled with it. For me, it has been an adventure. I am lucky to have no bone or kidney issues – yet.

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

  • It is a process. Educate yourself about the disease. There are many good options for treatment. Don’t despair, the survival statistics trend in our favor due to incredibly dynamic research initiatives.

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

  • Educational resources such as the IMF, MMRF, and LLS are invaluable. In addition, I highly recommend joining a multiple myeloma support group. We are the real experts.

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

  • This confrontation with my mortality led me to discover deeper levels of tolerance for others and myself. I am at peace with the disease.

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

  • My Dad was an automotive body and fender man. My Mom was a nurse.
  • I’ve played golf all my life – a lot of golf. Also, I worked as a greens keeper for seven years.

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

· Jon Siegel’s Multiple Myeloma Blog was a thorough and positive recounting of his SCT. For whatever reason, it stopped abruptly.

· Beth’s Myeloma Blog does a good job of walking us through her SCT experience. She later facilitated everyone’s access to other bloggers with Planet Myeloma. For humor and social insight, Because I Said So; Margaret’s Corner for integrative and alternative medicine including cat therapy; for imaginative prose I like Lisa Ray; actually, I read them all. Everyone’s story fascinates me.


*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 to cancerkicker at gmail dot com. I would love to share your story! -Phil