Living with multiple myeloma: My cancer is back

Waiting for chemo treatmentMay 2013: Waiting for chemo treatment

This week I had my Hematologist appointment and based on elevated levels of my Beta-2 microglobulin, my cancer is back. For most multiple myeloma patients, their myeloma protein resides in the gamma globulin, for me it is the Beta 2 globulin. My igG number is used to track my cancer levels, which will parallel my Beta 2 number. Right now, my igG level is 14.8, my Beta 2 level is 9.5. Therefore I was in complete remission (no myeloma visible in my blood stream) from November 2013 until July 2014.

I had a good discussion with my Hematologist. Basically if my igG levels spike or if I experience bone pain (a common symptom of multiple myeloma), then we will have to discuss chemo treatment options. Otherwise, we will watch my levels and hopefully they will only go up gradually. I will continue to have blood tests every five months and see my Hematologist every 3 months.

Serum Proteins (Electrophoresis & Immunoglobulins) (g/L)
Date Albumin Beta 2 Globulin Gamma Globulin igG igA igM
Reference Range 34.0-53.0 1.8 – 4.8 5.1 – 15.0 6.7 – 15.2 .70 – 4.00 .40 – 2.30
Oct 46.2 9.5 6.4 14.8 .39 .27
Sept 45.1 6.2 7.1 12.8 .36 .21
July 45.9 4.9 6.9 10.8 .34 .25
June 45.3 4.0 6.6 9.9 .33 .30
May 46.5 3.5 7.3 9.2 .33 .26
Apr 47.9 2.8 7.0 9.2 .28 .23
Mar 48.3 2.8 7.0 8.9 .31 .33
Feb 51.4 2.8 6.4 7.7 .24 .38
Jan 47.6 3.0 6.2 7.5 .17 .33
Nov 45.6 3.5 5.1 7.1 .14 .10

Test Comment: There is a monoclonal band in the beta 2 region. This band was previously identified as IgG lambda.

Hematology Profile
Date WBC Hemoglobin Platelet Count Neutrophils
Reference Range 4.0 – 11.0 135 – 170 150 – 400 2.0 – 8.0
Oct 4.1 139 305 2.1
Sept 3.7 135 241 1.8
July 2.9 133 247 1.4
June 3.4 135 265 1.8
May 3.2 138 294 1.5
Apr 2.3 137 243 0.9
Mar 2.0 135 211 0.8
Feb 2.0 132 208 0.9
Jan 1.9 124 217 0.7
Nov 2.2 118 220 1.1

I had a question about whether multiple myeloma was a chronic disease and about whether the spoonie theory applies. I was told that it is not, which makes sense to me. I don’t have a limited amount of energy each day and my disease is terminal.

I’m now in ‘preparing for chemo’ mode. With my last two chemo treatments, I had life altering events , so I may have serious side effects again and I need to be prepared (e.g. financially, physically, mentally, emotionally). During Revlimid, I had a ischemic stroke caused by TTP, a rare blood disorder and spent 12 days in hospital. In 2013, during Velade, my T7 vertebrae collapsed causing intense pain over four weeks.

I expect chemo in the next two years. It is important that I remain stress-free as possible in my life to help keep my levels from spiking.
I view my upcoming chemo as an opportunity to continue to share knowledge about multiple myeloma to others. Whenever my treatment happens, I will document it like in 2013 using photography and social media. I also hope to get going on Cancer Sabbatical, once I can get a laptop.

If anyone has any questions, just ask. Staying positive!

To recap: I have Multiple Myeloma, a rare blood cancer. It is incurable, but treatable. From February to November 2013, I received Velcade chemo through weekly in-hospital injections as an outpatient. It was a challenging year.

I also love photography and use it for personal health and healing. You can view my photos on Pinterest.

Sunset in a UBC ForestSunset in a UBC forest

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Seeking cancer patients that are entrepreneurs: Do you know any?

Autumn is hereAutumn

I do feel I need some inspiration from fellow cancer patients. What I’m looking for is rather specific and may be difficult to find. However, I’m living with a cancer that is 1% of all cancer, long odds are a part of my life. I’m looking for cancer patients that are entrepreneurs that have created, launched, or built something post-diagnosis (e.g. started a movement, founded a startup, built an app, launched a project). Ideally I would love to find someone that has an incurable, terminal cancer and needs chemo treatment every 2-3 years. I want someone similar to me, so I can understand how they do it, to help inspire me with my entrepreneurial endeavors.

My everyday interests are multiple myeloma, emerging technology, photography, and healthcare as I continue to explore how I can share awareness about multiple myeloma with others. One way I hope to achieve that is through Cancer Sabbatical my personal project. The desire is that I will generate knowledge and creative ideas that can be put into designing a solution to a problem faced by multiple myeloma patients.

I am a multiple myeloma patient, Multiple myeloma is a a rare blood cancer. From February to November 2013, I received Velcade chemo through weekly in-hospital injections as an outpatient. It was the most challenging year of my life.

I believe in me and I know I will accomplish my goals.

Taking a shortcut
Vancouver: Taking a shortcut

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Oct Blood Test Results

Blood Test Oct 2014 Last week I had my blood test and I just looked at the results online through a free service called myehealth, that is available in my province. The person that took my blood I recognized before. I didn’t need to explain that I was taking photos for my blog. The process was quick, I used my left arm as I believe my right arm is tapped out. I’m no longer stressed about what the results mean. If my myeloma has returned, or if chemo is in my near future, so be it, I’ll deal with it. I have alot of online community support to help me through whatever turn my health takes. I have a number of questions to discuss with my Hematologist.

Serum Proteins (Electrophoresis & Immunoglobulins) (g/L)
Date Albumin Beta Globulin 2 Gamma Globulin igG igA igM
Reference Range 34.0-53.0 1.8 – 4.8 5.1 – 15.0 6.7 – 15.2 .70 – 4.00 .40 – 2.30
Oct 46.2 9.5 6.4 14.8 .39 .27
Sept 45.1 6.2 7.1 12.8 .36 .21
July 45.9 4.9 6.9 10.8 .34 .25
June 45.3 4.0 6.6 9.9 .33 .30
May 46.5 3.5 7.3 9.2 .33 .26
Apr 47.9 2.8 7.0 9.2 .28 .23
Mar 48.3 2.8 7.0 8.9 .31 .33
Feb 51.4 2.8 6.4 7.7 .24 .38
Jan 47.6 3.0 6.2 7.5 .17 .33
Nov 45.6 3.5 5.1 7.1 .14 .10

Test Comment: There is a monoclonal band in the beta 2 region. This band was previously identified as IgG lambda.

Hematology Profile
Date WBC Hemoglobin Platelet Count Neutrophils
Reference Range 4.0 – 11.0 135 – 170 150 – 400 2.0 – 8.0
Oct 4.1 139 305 2.1
Sept 3.7 135 241 1.8
July 2.9 133 247 1.4
June 3.4 135 265 1.8
May 3.2 138 294 1.5
Apr 2.3 137 243 0.9
Mar 2.0 135 211 0.8
Feb 2.0 132 208 0.9
Jan 1.9 124 217 0.7
Nov 2.2 118 220 1.1

I have Multiple Myeloma, a rare blood cancer. From February to November 2013, I received Velcade chemo through weekly in-hospital injections as an outpatient. It was probably the most difficult year of my life and I’m happy it is over.

I’m focused on staying positive each day. Not doing much photography right now as I’ve without a laptop. Here is a photo from this summer.

Riding to Richmond

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Please seek out patients, we want to help

Waiting for my chemo treatmentFeb 2013: About to begin 9 months of chemo

  • If you’re organizing a healthcare gala or patient-focused conference, ask yourself what can be done to include patients as speakers or attendees.
  • If you’re a healthcare startup or conducting research that will benefit patients, seek out their advice throughout the development cycle.
  • If you’re teaching future healthcare professionals, invite a patient to guest lecture.
  • If you’re a student wanting to be a healthcare professional or working on a disease-related project, reach out to a patient for a personal perspective.

We welcome the opportunity to share our knowledge. Please seek us out. We want to help.

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Sept Blood test: Uncertain what they results mean in terms of my Multiple Myeloma

No cancer in this bloodMy next appointment with my Hematologist is next month. This month I had my blood test, which I get every 5 weeks. It was quick and I didn’t have any problems. Yesterday I checked the results online and I found them puzzling. It really helps lower my stress levels being able to go online soon after to see my results, rather than having to wait for my appointment. I use myehealth, a health service available to some residents in British Columbia. I don’t know what they mean regarding my Multiple Myeloma, basically I’m unsure if it has returned or not. If anyone has any ideas, please let me know.

Serum Proteins (Electrophoresis & Immunoglobulins) (g/L)
Date Albumin Beta Globulin 2 Gamma Globulin igG igA igM
Reference Range 34.0-53.0 1.8 – 4.8 5.1 – 15.0 6.7 – 15.2 .70 – 4.00 .40 – 2.30
Sept 45.1 6.2 7.1 12.8 .36 .21
July 45.9 4.9 6.9 10.8 .34 .25
June 45.3 4.0 6.6 9.9 .33 .30
May 46.5 3.5 7.3 9.2 .33 .26
Apr 47.9 2.8 7.0 9.2 .28 .23
Mar 48.3 2.8 7.0 8.9 .31 .33
Feb 51.4 2.8 6.4 7.7 .24 .38
Jan 47.6 3.0 6.2 7.5 .17 .33
Nov 45.6 3.5 5.1 7.1 .14 .10

Test comment: There is a monoclonal band in the beta 2 region. This will be investigated by immunofixation.

Immunofixation – Monoclonal IgG lambda band in the Beta 2 region in serum.

Hematology Profile
Date WBC Hemoglobin Platelet Count Neutrophils
Reference Range 4.0 – 11.0 135 – 170 150 – 400 2.0 – 8.0
Sept 3.7 135 241 1.8
July 2.9 133 247 1.4
June 3.4 135 265 1.8
May 3.2 138 294 1.5
Apr 2.3 137 243 0.9
Mar 2.0 135 211 0.8
Feb 2.0 132 208 0.9
Jan 1.9 124 217 0.7
Nov 2.2 118 220 1.1

I have Multiple Myeloma, a rare blood cancer. From February to November 2013, I received Velcade chemo through weekly in-hospital injections as an outpatient. It was probably the most difficult year of my life and I’m happy it is over.

I need a new laptop as mine is broken, so I don’t have any new photos to share. I’m focused on staying positive, that everything is ok with my blood test results.

Here’s a photo of UBC Wreck Beach from a January 2014 sunset.

Winter sunset at UBC Wreck Beach

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