I’m realizing that it can be difficult to understand why my cancer levels keep moving up and down like a yo-yo and why I continue to remain on chemo treatment that doesn’t seem to be successful. Since what defines success for multiple myeloma patients can be different from other cancers, I thought I would use this opportunity to provide an extensive summary about my particular treatment and multiple myeloma.
Since I had my Hematologist (Blood Cancer Specialist) appointment shortly after I received my January blood test results, I have a clearer understanding about my health and when changes to my treatment would occur.
M Protein (g/L)
Jan 2017 = 3.3
Dec = 2.4
Nov = 3.3
Oct = 2.5
Oct = 2.3
Sept = 2.8
Aug = value missing
July = value missing
June = 1.9
May = 1.7
Apr = 2.5
Jan – Mar 2016 = 3
My Hematology profile (how my body responds overall to being on treatment) looks good.
|| Platelet Count
||4.0 – 11.0
||135 – 170
||150 – 400
||2.0 – 8.0
I have multiple myeloma + anemia. Multiple myeloma is a rare cancer of a particular type of white blood cells called plasma cells within the bone marrow. White blood cells are part of the immune system, which is why multiple myeloma patients have an increased risk of infection. It is incurable, but treatable. I have blood tests every 4 weeks.
The M protein is the best marker for determining my cancer levels. From my January blood test result, you can see my cancer levels are higher than December – 3.3 vs 2.4, but the same result as November. It looks like my chemo treatment isn’t really successful bouncing up and down like that, when actually it is working great.
I’m on long term maintenance therapy and the chemo (called Pomalyst) is suppose to keep my cancer levels low and stable by slowing or killing off the myeloma or cancer cells. I take low dose pills for 21 days and then get 7 days off. If my cancer levels drops to 0 – complete remission, meaning no detection of myeloma in my blood – I would still remain on it. The chemo would then be responsible for preventing a relapse, which could occur 8 months or 8 years later.
As part of my treatment, I take a weekly steroid (Dexamethasone), which generally enhances the effectiveness of the chemo treatment. If my cancer levels spike e.g. double or triple, then it means that the chemo has stopped working. Or, if the chemo causes a major side effect, then I would likely stop taking it. So, best case scenario, if everything keeps going well, I stay on this chemo indefinitely.
My Hematologist (Cancer Specialist) appointment, which usually occurs every 12 weeks, took place after 8 weeks. If you remember, there were concerns from my Glaucoma Specialist during our November appointment about my elevated eye pressure levels (26 left, 32 right) due to my weekly dexamethasone (steroid). Thankfully, a follow-up appointment in December showed that the eye drops prescribed had lowered my eye pressure back to normal levels (left 15, right 16).
In discussions with my Hematologist, we decided there won’t be any changes to my treatment as long as my cancer levels remain stable. Going up and down is ok (e.g. Feb = 2.4, Mar = 3.3, Apr = 2.6). However, if they jump to 5 or 6, then it is an early indication, that the chemo is losing its effectiveness, and we will make adjustments as necessary. However, there is no need for concern right now.
I will still remain on dexamethasone (steroid). If my eye pressure levels had remained high (20+), we would drop it, as my eyesight takes precedence. “I want to stay on dexamethasone” – said no cancer patient ever. But, we can’t stop the dexamethasone (4mg weekly), because if my cancer levels increase on subsequent tests, we won’t know if the chemo has lost its effectiveness or whether it is due to stopping the dexamethasone.
Although this chemo treatment is keeping me alive, the long term effects are brutal. After about 2 years my mind is pretty much mush. My memory is fail. I have chronic fatigue leaving me exhausted after a short conversation or making something simple like a tuna salad sandwich – I rarely have the mental capacity to cook or prepare anything anymore. My weekly dexamethasone has added significant fat to my body, enhanced my chronic fatigue, and often makes me hungry.
Sometimes I’ll catch myself wondering whether my cancer will cause lesions over my body, liver damage, or results in chronic bone pain. However, freaking out or always focusing on negativity isn’t me. I feel fortunate that I have all my senses, I can walk without an aid, and I wake up each morning in a beautiful city.
Instead I chose to focus on positivity in my life and continuously direct healing energy to my body. I welcome the quiet moments on Wreck Beach when I can spend the day tanning and reading. I like to relax watching movies, binging TV series, or following my favourite sports. And photography help me cope with my ongoing challenges. I enjoy hiking through our regional parks taking photographs and self-portraits, alone with my thoughts while I marvel at the beauty of nature all around me.
I’m all about adventuring with happiness in my heart and a smile on my face.
Photo: On Thursday I travelled to Belcarra Regional Park in Port Moody and hiked part of the Admiralty Point Trail. I stopped at Cod Rock and watched as the sun broke out amongst the clouds. Although it would have been beautiful to take a snowy self-portrait on the rocks, it would have been quite dangerous. My remote shutter release doesn’t work, so I have to set my camera up on a 10 second delay and then run to the spot I want to pose at. I can guarantee I would have captured photos of me slipping on the rocks, falling into the water, yelling “ahhhhh”. Not something I ever want to experience.
To recap: On Sunday, January 29th, I completed Cycle 26 Week 3. I have Multiple Myeloma and anemia, a rare blood cancer. It is incurable, but treatable. Since February 9th 2015, I have been on Pomalyst and dexamethasone chemo treatment (Pom/dex).
Weekly chemo-inspired self-portraits can be viewed in my flickr album.
May 2014 – Granville Island
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