Living with multiple myeloma: Pomalyst chemo cycle 1 week 1

Reflecting on Wreck Beach, first cycle of Pomalyst chemo todayWreck Beach: Reflecting on new chemo treatment

This morning, I began a new cycle of treatment called Pomalyst (Pomalidomide). I’m on a 28 day cycle in which I take one pill (4mg) a day for 21 days and then get 7 days off. Pomalyst is combined with dexamethasone (referred to as Pom/dex) to enhance its effectiveness. I will take 10 pills every 7 days (each is 4mg), so 40mg in total every week. I picked up an 8 week supply from the BC Cancer Agency last week. What was very helpful is that the Pharmacist that gave me my dexamethasone also gave me some recommended dietary advice and information about how this steroid drug will affect me. For example, I should take it in the morning with breakfast preferably with water or juice.

PomalystPomalyst chemo pills

Potential side effects of Pomalyst include constipation and diarrhea. There is also a concern that blood clotting may occur, so I take baby aspirin daily, which functions as a blood thinner. Potential side effects of dexamethasone include insomnia, depression, weakened immune system, bone loss, increased appetite and weight gain. I really need to watch my health and listen to my body during my treatment, lots of bad things can happen to my body.

DexamethasoneDexamethasone (steroid) pills

As a multiple myeloma patient, I’m already at a high risk of bone loss and of developing osteoporosis, so it is especially important that I do what I can during treatment to keep my bones strong. The BC Cancer Agency recommends I get 1000 mg of calcium daily, but that I don’t exceed 2500 mg. I get get that from foods such as milk, sardines, and cheese. I can also use a supplement such as calcium carbonate at doses of 500mg or less. They recommend I get 600 IU of Vitamin D but don’t exceed 4000 IU. I can get Vitamin D from fish, milk and eggs. Again, I can also use a multivitamin or a mineral supplement. It is also recommended that I eat protein daily and be physically active.

I’m staying confident that I will respond positively to treatment. I will continue to use photography and self-portraits for health, healing, and happiness.

I’m focused on staying positive each day.

To recap: I have Multiple Myeloma and anemia, 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. From February 9th 2015, I am on Pomalyst and dexamethasone chemo treatment (Pom/dex).

Vancouver through raindropsJanuary 2015: Vancouver through raindrops

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Calcium – The Future Sound of London *

Calcium = 2.16. Apparently that does matter. Who knew.

In the melee of figures that go with having regular blood tests, I’ve learnt to focus on the few that really matter. Normally, that means the indicators of blood cell types, and of course indicators of myeloma. Every now and then, my attention is drawn to something else (I had a crash course in liver function indicators, many moons ago.) One number I have consistently ignored has been my calcium level. Active myeloma can cause hypercalcemia (too much calcium in the blood). But my calcium has been consistently low (hypocalcemia). This is almost certainly a consequence of the bone strengthening drugs I’m still on (though next month may be my last, with a bit of luck).
Every time I go for treatment they tell me my calcium level is low, but treat me anyway. I then take calcium supplements for a few days, before forgetting all about it for another month.
Since the summer, I have been having consistent abdominal muscle pain. This has been a site of much unpleasantness in the early days (spasms due to vertebrae damage in the beginning, and then sporadic flare ups during my initial treatment), so its recurrence has been disconcerting as well as painful (though nothing like the pain of old, when I was unable to stand up without searing agony).
I tried to put the “what if…”s to the back of my mind and focus on addressing the symptoms. After a lot of (yellow) English mustard (turmeric, which is yellow, is good for muscle spasms – among many other things, so English is better than less-yellow-French or more-added-colouring-American!), some amitriptyline** (short term relief), and a bit of stretching exercise (if anything, this made it worse), I seem to have settled on an answer… increased calcium. I’ve been getting through a lot of chalky calchews.
Sure enough, today’s test results shows higher calcium levels than ever – actually in the normal range – and at the same time my muscle pain has gone away. The nurse today agrees the two could easily be connected. Not that anyone volunteered this fact to me until I’d worked it out for myself. Apparently – she fills in the science bit for me – mineral imbalances between in-cell and out-of-cell levels can lead to pressure, and so pain, across stressed muscle areas… so for me to experience it in my abdomen is not really that surprising.
Having myeloma is a bit like switching the body’s blood machine from automatic to manual – things which used to auto-correct themselves now have to be actively managed. What a pain. Or not a pain, actually, right now.
* I was unsure whether I am allowed to put an instrumental in as my lyric quote. And then I remembered it is my blog. So I am the arbiter of the rules, as well as good taste, in this space. I can see it will pose a little problem for those of you who don’t know it… So here’s a link to listen on youtube. And of course, it is today’s contribution to RadioM. for those on spotify.  Seminal early 90s ambient techno. And the first album I discovered while at university.

** Google’s spellchecker doesn’t recognise the word “amitriptyline” and wanted to correct it to “pantyliner”, but I haven’t tried those, so I can’t tell you if they are any good for my muscle cramps, I’m afraid.

Lots of Buddies

We’ve had a spate of Myeloma Buddy production going on over the past few months.  If I’m a bit stuck for something to take out with me or just need something small I knit a Buddy.  When I was thinking of posting the pics I realised that I’d never said where the orange Myeloma Buddy army went last year.

The 100 Buddies were ordered by Myeloma UK – orange or rather ORANGE being their corporate colour.  They are available direct from them and are listed in their site shop right here.  They’re also for sale at their Info Days.

While I’m at it there’s also a link to my Buddies in the FUNdraisers section of the IMF site (International Myeloma Foundation that is not the better known but less fantastic International Monetary Fund).

Mmm, wonder what one would look like in fabric?

Other creative spaces are here.

When I went for dialysis today I asked about the results of the 24 hour wee collection from Monday.  Apparently the level of toxins in it that my kidneys had filtered is not yet normal but is going up.  The blood test showed my calcium level is on the low side even though my Calci-chew dose was increased three weeks ago from 2g a day to 4g so the nurse said she’d get a doctor to review it when I went in on Saturday.