Week 142 of chemo complete: Playing in the leaves

Wednesday morning I travelled to Douglas Park in the South Cambie neighbourhood of Vancouver. There were beautiful trees surrounding the large open field and I observed people walking their dog, pushing baby strollers, or jogging. Leaves were falling off the trees due to a steady breeze, and they appeared golden when the sun broke through the clouds.

A pleasant place for some fun!

Week 142 of chemo compete: Playing in the leaves

To recap: On Sunday, October 29th, I completed Cycle 36 Week 2. I have Multiple Myeloma and anemia, a rare cancer of the immune system. Multiple myeloma is a cancer of the plasma cells that affects the plasma cells, a type of immune cell that produces antibodies to fight infection. These plasma cells are found in the bone marrow. As a blood cancer, it is incurable, but treatable. Since February 9th 2015, I have been on Pomalyst and dexamethasone chemo treatment (Pom/dex). On July 16th, my dexamethasone treatment ended, due to eye damage, reported by my Glaucoma Specialist, from long-term use.

Weekly chemo-inspired self-portraits can be viewed in my flickr album.

The colour of commerceMay 2014: The colour of commerce

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Week 139 of chemo complete: Making sense of my spiked cancer levels

Apologies for not sharing blood test results for a while. I needed clarification from my Myeloma Specialist after viewing my Aug, Sept, and Oct results. Unfortunately, I have spiked cancer levels (m protein value). My Oct results show my cancer levels jumped up to between 5 to 6. Recall, that in July we stopped dexamethasone (dex) with my Pomalyst chemo as my Glaucoma Specialist found eye damage.

As I’ve stated before, I think of dex as strawberry jam and Pomalyst as peanut butter. A peanut butter + jelly sandwich tastes better than a peanut butter sandwich alone. Dex + Pomalyst were effective together at keeping my cancer levels stable – since Jan 2017 around 3. We will now determine how effective Pomalyst is alone.

I have a less common type of multiple myeloma, making it more difficult to get an actual m protein value during blood tests. Ideally, the next 3 tests will show that my cancer levels have found a new stability on Pomalyst chemo alone (preferably in the 5 to 6 range).

If my cancer levels continues to spike, we will have to determine the best course of action during my next appointment in the new year.

Thanks for your support and encouragement!

M protein (g/L)
Oct = between 5 to 6
Sept = less than 7.7
Aug = value missing
July = 3.0
June =3.2
May = value missing
Apr = 3.0
Mar = 3.0
Feb = 3.5
Jan 2017 = 3.3
Feb 2015 (pre chemo/dex) = 36.1

My Hematology profile (how my body responds overall to being on treatment) looks good.

Hematology Profile
Date WBC Hemoglobin Platelet Count Neutrophils
Reference Range 4.0 – 11.0 135 – 170 150 – 400 2.0 – 8.0
Aug 2017 4.0 122 253 2.0
Aug 2017 4.4 126 285 2.6
Aug 2017 4.7 126 284 2.6
Jul 2017 4.6 136 323 3.6
Jun 2017 5.2 131 312 4.3
May 2017 5.1 132 303 4.1
Apr 2017 6.6 127 294 3.7
Mar 2017 5.1 130 303 4.2
Feb 2017 4.8 132 324 3.6
Jan 2017 4.8 136 304 3.7
Dec 2016 6.7 128 303 3.4

Week 139 of chemo complete - Making sense of my spiked cancer levels

To recap: On Sunday, October 8th, I completed Cycle 35 Week 3. I have Multiple Myeloma and anemia, a rare cancer of the immune system. Multiple myeloma is a cancer of the plasma cells that affects the plasma cells, a type of immune cell that produces antibodies to fight infection. These plasma cells are found in the bone marrow. As a blood cancer, it is incurable, but treatable. Since February 9th 2015, I have been on Pomalyst and dexamethasone chemo treatment (Pom/dex). On July 16th, my dexamethasone treatment ended, due to eye damage, reported by my Glaucoma Specialist, from long-term use.

Weekly chemo-inspired self-portraits can be viewed in my flickr album.

StevestonMay 2014: Steveston

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Week 138 of chemo complete: Autumn morning in Stanley Park

Early Saturday morning I travelled to Stanley Park, shortly before sunrise. It was the beginning of a beautiful day and I felt I had the park to myself as I wandered around. I stumbled upon this clearing in a forest, a perfect place for a photo. Stanley Park is a peaceful place that I enjoy visiting throughout the year. I can’t wait to return.

Week 138 of chemo complete: Autumn morning in Stanley Park

To recap: On Sunday, October 1st, I completed Cycle 35 Week 2. I have Multiple Myeloma and anemia, a rare cancer of the immune system. Multiple myeloma is a cancer of the plasma cells that affects the plasma cells, a type of immune cell that produces antibodies to fight infection. These plasma cells are found in the bone marrow. As a blood cancer, it is incurable, but treatable. Since February 9th 2015, I have been on Pomalyst and dexamethasone chemo treatment (Pom/dex). On July 16th, my dexamethasone treatment ended, due to eye damage, reported by my Glaucoma Specialist, from long-term use.

Weekly chemo-inspired self-portraits can be viewed in my flickr album.

ReflectionMay 2014: Reflection – Richmond

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Good News Again

Stable:

Since April of 2016 my treatment regimen has been Pomalyst (pomalidomide) and Darzalex (daratumumab), with dexamethasone in the early months.  That combination brought my IgG and M-Spike down to the lowest levels seen since diagnosis 14 years ago.  M-Spike has not been above 0.5 g/dL since August 2016, and it was 0.5 again last Tuesday.  IgG was 536 mg/dL, about where it has been for more than a year.  This is wonderful.

The Darzalex protocol (with Pomalyst) calls for infusions once per week for 8 doses, then every other week for 8 more, and finally once per month “until disease progression.”  So far so good.  Darzalex is an infusion that takes several hours, but I get a blood draw, then a visit with the hematologist, and finally the infusion, and I’m still out soon after noon.  Some people bring a book to read – I bring my laptop and it’s no problem at all.

I take it easy for the rest of the day, and life is back to normal the next day.  Darzalex is given with some prednisone (or dexamethasone) to reduce the likelihood of an infusion reaction, and I do feel some side effects from that steroid, but none from the Darzalex.  Life is good.  28 Infusions of so far – I wonder what my life would have been like without that potent, innovative new medication.

Pomalyst has been part of my treatment regimen, 2 mg daily, for all but one of the last nine years.  For the past two months my doc and I have tried cutting that to 2 mg for 21 of each 28 days, with no discernible increase in M-Spike or IgG.  Perhaps we’ll reduce it more, we’ll see.

PET Scan:

This was encouraging too.  “Essentially complete metabolic response of lytic bone myelomatous lesions to therapy. No new FDG avid lesions.”  In other words, the old myeloma hot spots are gone and there are no new ones.  Three other findings were worthy of note:

  1. Some inflammation at the bottom of the esophagus.  This matches my own symptoms of occasional acid reflux.  Something to deal with.
  2. Stable, chronic thyroiditis.  Yup.  Dealing with it.
  3. “Reactive FDG activity at the origin of the right hamstrings.”   No kidding!  I’ve been battling this running injury all summer, and my sports doctor recently used ultrasound imaging to diagnose it.  He’ll be happy to hear that the PET scan confirms his diagnosis.  Cool!  I’ve requested a disc with the actual PET images (always do), and can’t wait to see it myself.

Transplant:

In 14 years with myeloma I have not had a transplant, because for all of that time the medications have kept my myeloma stable.  I asked the doc if there was any reason to think about collecting stem cells for an autologous SCT now, and he thought not.  I’m already 76 and currently on a good regimen, with several new therapies to try when the current one fails, and with more therapies in the FDA-approval pipeline.  By the time those options are exhausted, I’ll hopefully be too old for any transplant doctor to consider me a good candidate.  So now my goal is to become the myelomiac to live the longest without a transplant.  Well, somebody’s got to do it.

Week 117 chemo complete: I like to have fun!

Week 117 chemo complete: I like to have fun!

This morning, shortly after sunrise I walked to a playground close to my house. Playgrounds are a perfect place to have fun, especially when you get there early before anyone shows up. All of us have daily challenges that can dampen our spirits and make us sad. However, I believe that focusing on negativity just adds stress to my life.

I ain’t got time for that!

Instead, I emphasize positivity each day, keep happy thoughts in my head, and remain calm when things gets rough. Because I know that adding some fun to my life will brighten my spirits and put a smile on my face.

To recap: On Sunday, May 7th, I completed Cycle 30 Week 2. I have Multiple Myeloma and anemia, a rare cancer of the immune system. Multiple myeloma is a cancer of the plasma cells that affects the plasma cells, a type of immune cell that produces antibodies to fight infection. These plasma cells are found in the bone marrow. As a 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.

Vancouver Waterfront StationMay 2014: Vancouver Waterfront Station

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Week 112 chemo complete: Hello cherry blossoms!

Week 112 chemo complete: Hello cherry blossoms!

Saturday morning it was cold and raining, so I stayed close to home and travelled to Queen Elizabeth Park. It was beautiful to see all the cherry blossoms everywhere. I was worried about getting my camera wet, so I placed my toque on top to block the rain. I got muddy and very wet repeatedly sitting in the grass. Thankfully I had lady grey tea to warm me up afterwards.

Happy Springtime!

To recap: On Sunday, April 2nd, I completed Cycle 28 Week 4. I have Multiple Myeloma and anemia, a rare cancer of the immune system. It is a cancer of the plasma cells, a type of immune cell that produces antibodies to fight infection, found in the bone marrow. As a 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.

English Bay - VancouverJune 2014: English Bay, Vancouver

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Week 105 chemo complete: Staying dry on Sunset Beach

Week 105 chemo complete: Staying dry on Sunset Beach

I arrived on Sunset Beach just after sunrise and watched from the shore as ducks swam by. It began to lightly rain so I covered my camera with my touque and took self-portraits on the beach, before it became too heavy.

I’ve felt pretty fatigued recently, but after my early morning trip to Sunset, I’m feeling much better. Something about sand and the sound of waves crashing the shore, that always lifts my spirits. Looking forward to summertime and many sunny adventures.

To recap: On Sunday, February 19th, I completed Cycle 27 Week 1. 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).

Segway on the seawallMay 2014: Segway on the Seawall

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Week 103 chemo complete: January blood test results – Cancer levels stable

Week 103 chemo complete: January blood test results - Cancer levels stable

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.

Hematology Profile
Date WBC Hemoglobin Platelet Count Neutrophils
Reference Range 4.0 – 11.0 135 – 170 150 – 400 2.0 – 8.0
Jan 4.8 136 3046 3.7
Dec 6.7 128 303 3.4
Nov 5.7 132 325 4.8
Oct 4.3 130 343 3.5
Oct 5.3 126 311 4.2
Sept 7.9 128 295 4.8

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.

Waiting on letters from a friendMay 2014 – Granville Island

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Pomalidomide

I didn’t realise how long it has been since I last wrote. Christmas was quiet but very good.

My levels continues to rise. I did more Revlimid and my consultant added in the dreaded Dex at 40mg. But to no avail. We have decided that I should go on Pomalidomide. It’s the next iteration from Revlimid and you have it in the same way – pills for three weeks and a week off. Dex every week on the first day of my cycle. That’s why I’m up at 3.40 am writing this! I’m on my second week of Pom now, and haven’t noticed much difference. More fatigue perhaps and I’ve had to up my Questran to stop the runs returning. But I’ve also been put back on Zometa IV once a month for my bones and that requires Adcal/D3 – 4 more tablets a day, away from other meds. And also I’m having allpurinol (for uric acid) – it’s common to have at least a month’s worth. So these drugs may be partly the cause for the bad tummy and bowels. I’ve certainly had very bad acid reflux. My list of medicines is now truly impressive!

Apart from the usual aches and pains I have had periods of bad cramps in hands and feet, which are quite unnerving – my thumb can suddenly lock for example. But I haven’t had them as badly more recently so I’m hoping it’s a temporary thing. Very well known side effect of Revlimid.

So just a question of waiting for the next blood results which will be in a few weeks time. Hoping at the very least things may have stabilised, but one round won’t be enough to tell.

I was hospitalised for one night as I complained of being a bit breathless. They didn’t hang around – Revlimid can cause blood clots. In and out of x-ray, CT scan, oxygen tests etc. Nothing. But I have discovered I am anaemic again, so hopefully they might do something about that. I had to go on Clexane injections (blood thinner) and what with that and my immunoglob injections 3 times a week, my stomach was very bruised. I tried it in my thighs and buttocks, but the size of the bruises was huge – still got them though I’ve been off Clexane for a couple of weeks.

Went to Leicester to see my immunologist – saw a new member of staff who was lovely and very thorough. She gave me a ring when some blood tests came through and was very supportive. My Ig levels are normal, if a bit low end.

So that’s about all. My brother had a successful bowel cancer op – 25 cms out, glued back together, all by keyhole, no stoma bag, no spread as far as they can see. He’s still in a bit of discomfort not surprisingly, especially as I guess his bowels have all been shuffled around a bit inside but he is recovering well.

Oh yes, and I’ve done a genetic survey for bowel cancer – meant filling in lots of family details, which took ages to do. That goes off the Oxford and then I’ll get a talk to the geneticist at my local hospital. My GP suggested all that – he’s very good. Might help with understanding the probabilities of my kids getting it – they could then get tests when they were older.

 

PET Scan Looks Good

Before I started the current regimen, a PET scan last April 9 displayed five different lytic lesions, three of them in the spine.  Last Wednesday’s PET scan showed that all five lesions are significantly decreased, and most are gone.  One isn’t even mentioned.

This is excellent news.  We knew that my M-Spike and IgG were down to about 40% of their April values, but that doesn’t guarantee freedom from bone damage.  With these PET results, we can be pretty sure that no damage is occurring.  As we looked at the PET images together, Dr WG showed me a small chunk missing from a vertebra – looked like about BB size – damage that did occur before this regimen, but probably not bad enough to put the vertebra at risk of breaking.

So what is this potent regimen?  Please note: I am not a doctor.  This is working for me, but might not for you.  I am taking Pomalyst (pomalidomide) orally, 2 mg daily, 28 days of 28, and receiving infusions of Darzalex (daratumumab).  At first I received the Darzalex weekly, then every other week, and the last three have been four weeks apart.  According to the Darzalex prescribing document, these monthly infusions continue “until disease progression.”

PET Radiology Report

I’m all for that.  Notice, though, the presumption of disease progression,  Myeloma always figures out a way.  So now that the myeloma is stable, the hope is that the period of stability will last a long time.  Happily, neither medication brings serious side effects with it.

With the Pomalyst and darzalex I am also taking dexamethasone (DEX) 12 mg on the weeks with no Darzalex infusion.  I asked Dr WG if I could stop the DEX, but he said that he prefers to ramp it down slowly.  He voiced the scenario that I have feared from the outset – a broken vertebra would most likely put an end to my running lifestyle.  As he suggests, I will happily (or grumpily) take 8 mg once weekly for the next month at least, before reducing it further.  DEX is no fun, but 8 is better than 12.

Overall the news is good, and life is great.  Before long we’ll be off to Philly, to run the 100th marathon with myeloma.