Living with multiple myeloma: My cancer levels have spiked

sildenafil on Flickr”>Waiting for a blood testJuly 2014: Waiting for my blood test

In October I was told by my Hematologist that my multiple myeloma + anemia had returned. During that appointment I learned that since July, my cancer levels had been gradually increasing. Last month, the blood test revealed that my level continued to rise. There have been challenges this Fall as my cognitive abilities have been eroded. Concentration, focus, remembering, and thinking is much more difficult. Conversations can be mentally draining. Writing a blogpost takes much longer than expected. Trying to follow storylines in a book or tv show can cause confusion.

Last week I had my blood test and I was able to view the results the next day online through a free service called myehealth, that is available here in British Columbia. During my October Hematologist appointment, I was told that if my cancer levels spiked or if I experienced bone pain, then the next appointment would result in a discussion about chemo options. Sadly, my cancer levels have spiked. With multiple myeloma being a cancer of the blood plasma, it is in my bloodstream, rather than concentrated in one particular area.

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
Dec 42.4 17.9 5.1 24.3 .33 .38
Nov 41.3 11.8 5.5 16.9 .37 .36
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 (approx. 9 g/L) in the beta 2 region. This band was previously identified as IgM lambda.

The igG is the general marker used to measure cancer levels in multiple myeloma. For me, my multiple myeloma resides in the Beta 2 globulin region, in others it lies in the Gamma Globulin. That’s why you can see my Beta 2 mirroring my igG outside of the normal range, while my Gamma Globulin remains within it.

In November 2013 following 9 months of chemo I thought I would have 3-5 years before I would have to concern myself with chemo. In October I thought I would have 1-2 years without needing to worry about treatment. Now I’m facing the reality that chemo may begin in February with the details being finalized during my January Hematologist appointment.

Hematology Profile
Date WBC Hemoglobin Platelet Count Neutrophils
Reference Range 4.0 – 11.0 135 – 170 150 – 400 2.0 – 8.0
Dec 3.8 128 235 1.9
Nov 2.7 130 265 1.3
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’m focused on staying positive and making sure I’m adequately prepared for whatever comes my way in 2015. Chemo side effects won’t be easy, but I’m confident with the help of my friends, I will get through the dark days.

Although at the moment I don’t have a macbookpro for my photography and my camera is on its last legs, I view my upcoming chemo as an opportunity to continue to share knowledge about multiple myeloma to other patients, caregivers, and anyone touched by this disease. I will do my best to document my chemo like I previously did in 2013 using photography and social media. I also have a personal project I want to pursue called Cancer Sabbatical once my circumstances improve.

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.

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

Lonsdale Quay Market - North VancouverMay 2014: Lonsdale Quay Market

About tyfn

From December 2019 I've been on Darzalex (daratumumab) IV chemo with Velcade (Bortezomib) injection chemo + dexamethasone. Have Multiple Myeloma + anemia, a rare incurable cancer of the immune system. Life goal: To spread awareness about Multiple Myeloma through my self-portraits. UBC MSc Grad.
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4 Responses to Living with multiple myeloma: My cancer levels have spiked

  1. I am so sorry to hear about, and see those test results, but I love that you are keeping positive and focusing on the good stuff. I know chemo won’t be easy (what an understatement,) but with your strength, and your friends’ support, you can do it. Yes, you can!

    • tyfn says:

      Yes, I’m staying positive. It will be challenging but I know that with the support of others I will get through whatever obstacles are thrown my way. Thanks for believing in me :).

  2. Linda Latham says:

    Hello – sorry to hear your numbers are going up but wanted to let you know I was in a very similar situation 5 years ago. I was started on Revlimid/Dex at that time and have been leading a fairly normal life ever since. The dosages have been gradually decreased and the side effects are very manageable. More and more our physicians seem to be focusing on effective treatments that also recognize the importance of quality of life and desired lifestyle. Best of luck to you and thank-you for sharing your ongoing story.

    • tyfn says:

      Thanks Linda for the encouragement. I was already on Rev/Dex from Sept 08 until Dec 09. I contracted TTP which caused a stroke and spent 12 days in hospital. After I got out I was off chemo until Feb 2013 when I had Velcade/dex injections for 9 months. The initial side effects were brutal, but overall I got through it. I have no idea what chemo I will get next time, I suspect Velcade. I will continue to share my story – it helps me cope.

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