Myeloma and Pernicious Anemia: My Constant Companions

Pernicious Anemia

In January of this year I published a post about the connections between myeloma and pernicious anemia. In that post I misidentified pernicious anemia as a B12 deficiency. It’s not. Pernicious anemia is actually an autoimmune disease that produces antibodies to a protein called intrinsic factor that is produced in the gut and that is required to ‘extract’ B12 from food. It’s a devilishly difficult condition to diagnose. Low levels of B12 are obviously an important indicator, but there are other reasons that a person might have low B12 levels. Probably the best accessible article on pernicious anemia can be found on the Pernicious Anaemia Society’s website. It’s well worth reading.

Now, I have assumed for some time that I have pernicious anemia but I’m no longer certain. It turns out that 50% to 70% of people who have a B12 deficiency, which I definitely have, will have that deficiency caused by pernicious anemia. I have not been tested for intrinsic factor antibody, a test that would definitively confirm a diagnosis of pernicious anemia, so I don’t really know if I have it or not.

Whatever, I know for a fact that I have a B12 deficiency. In order to treat that deficiency I inject B12 (cobalamin) into my thigh every two weeks. However, because of my mixed record of injecting B12 over the past twenty-five years I may have what’s called  Autoimmune Metaplastic Atrophic Gastritis (AMAG). That just means that my B12 symptoms may never go away, even after my regular injections. Then again they may dissipate, but I have no confidence that that will happen.

An International study is now underway initiated by the Pernicious Anemia Society to try to understand the extent of the disease and to track the problems people have had with getting a proper diagnosis. It may be that we will get some answers, but I’m not holding my breath. At seventy-five years of age, I have a limited amount of breath left in me in any case so maybe I should hold on to some of my breath!

Myeloma

Yeah, well, myeloma. As I noted in my January post, the symptoms of myeloma and pernicious anemia overlap considerably. So, I have no idea what’s driving me nuts with peripheral neuropathy, numbness and tingling in my hands and feet, fuzzy brain, poor balance, weakness, especially in my legs, and bone pain, to name just a few of the symptoms I’m experiencing. It could be both the B12 issues and the myeloma that are teaming up to keep me in my place, and the chemotherapy is also no doubt contributing to my now radically re-assessed quality of life.

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So, that’s it. I’m old, I have a severe B12 deficiency that could be the result of pernicious anemia, and I have multiple myeloma, with its attendant chemotherapy.

As I lay in bed last night I harkened back to times in my life when I was still able to do things easily and effortlessly, things like canoeing, woodworking, building decks, garden structures, and a number of other physical things. I can still paint and draw, but with some difficulty. Writing is even getting to be an issue because I can barely feel the tips of my fingers on my left hand, my dominant hand.

It’s been difficult at times, not because of my physical abilities, but because of my attitude towards them. I’ve had challenges keeping the dark side away, the feeling that I can’t do things anymore like I used to, making me a lesser human being, somehow.

Carolyn and I both read the news and despair at the state of the world, but Carolyn seems to have a greater capacity than I do for keeping the dark side away and for maintaining a sense of perspective about the world. It’s true that the world is in a mess, but it’s always been in a mess if the press is to be believed. I have to keep reminding myself that the press, all of it, has a vested interest in propagating the dark side. That’s where the money is. Outrage and fear sells the goods. The bright side doesn’t.

That said, I don’t want to be captured by the dark side or the bright side. The world is a complex place. Life is finite and changes all the time. Mommy doesn’t have to change my diapers like she did seventy-three years ago, even if she were still alive. I don’t have to put a uniform on and go to elementary school. I never have to write a final exam or go on a job hunt ever again. Of course, I won’t experience the joy of the early days of fatherhood ever again either, of falling in love, nor of the thrill of discovering a wonderful, new camping spot.

I guess my point with all this rambling is that life is full of variety, both at the individual as well as at the socio-political level. Some things we call bad, some good. Those are judgment calls, which for us are adjudicated with reference to capitalist morality which itself is expressed in possessive individualism based on wealth and health. We look down on the poor and the unhealthy.

These judgments are not easy to counteract both at the individual and the political levels because they are so deeply rooted in our culture. They are so familiar to us that we consider them normal and reasonable. It’s easy to feel self-loathing for being poor or in ill-health. It’s almost expected of us. And those individual feelings are reinforced every day in a thousand ways by the vast majority of us as we compare ourselves to others, those with money or excellent health (mental and physical).

If I let myself I can easily be dragged onto the psychologically dark and barren landscape of blame and feelings of unworthiness. Enough of that now. I have a limited number of days, months, and years left to live. I cannot, I will not live them in fear and self-loathing.

Death is like a destination, one we have no choice in travelling towards. But, you know, some of the best trips I’ve taken have been at their finest and most exciting just before reaching our intended destination. Maybe that’s a good metaphor for the last bit of my life.

One Step Forward and Two Steps Back

Sometimes I think that it would be good if life were simpler. For me, it’s anything but simple. Maybe my expectations are too high. Maybe I’m not being realistic. Maybe if I relaxed a little, all would be better. Maybe. Yet, the complexity just seems to expand, to encompass everything, no matter what I do, or don’t do. 

I’ve been off chemo meds for about five weeks, and I have until the end of March before I go back on them. At least that’s the current plan. There was never a plan for long-term withdrawal from my chemo meds. I haven’t had my blood tested for a few weeks, and it will be another three weeks before I get tested again. I’m of two minds about that. It’s quite possible that the bloodwork will show that myeloma has again taken up full-blown residence in my blood and bone marrow. It may also be that it shows that I’m still okay. It’s always a crap shoot and somewhat tense for that reason. 

More concerning for me is the fact that since my withdrawal from hydromorphone I’ve been in a lot of pain. It hasn’t attenuated much at all. I’ve been able to walk a bit two or three times a week, but any walking I’ve done has been painful. I generally walk around two kilometres, and that takes me half an hour. Not a blistering pace. 

Because of the incessant pain I’m in I’ve had to backtrack and reconsider my decision to cease taking opioids. I took a slow release capsule this morning as a test and I have felt some relief. It may be that I’m dreaming in technicolour if I think that I can manage without pain meds. 

Speaking with my GP/oncologist last week was enlightening. He doesn’t think that the pain I’m having has anything to do with my B12 deficiency, opioid withdrawal or myeloma. He thinks it’s attributable to chronic pain, something I’ve experienced for decades. (I’m not sure I completely agree with him on that.) Thinking back over the past thirty years and it’s clear to me that I’ve had periods before I was diagnosed with myeloma or pernicious anemia when I’ve experienced extreme pain and other very strange symptoms like having a yeasty odour and having my skin welt up after drawing a dull object over it with not a lot of pressure.* In the mid-nineties I had a period of debilitating fatigue to the point where I could barely function. I was also depressed at that time, with good reason to be. 

The chronic pain that I’ve experienced throughout most of my life is associated as much as I can tell, with the consequences of surgeries I’ve had. The two main ones are a laminectomy (disc removal) and a nephrectomy (kidney removal). As well, I’ve had the odd accident on my bike and some running-related injuries. My neck has been a source of a lot of pain over the years brought on mainly by years of hunching over a computer terminal. I envy people who go through life with very little or no pain. There aren’t many of those in my family. I have siblings with MS and fibromyalgia. I have quite a few relatives with autoimmune diseases. It seems to run in the family. We’re also a long-lived bunch. That might be good, but it might not be so good too: all the more time to suffer from debilitating pain. 

The biggest and most distressing challenge I face right now is the weakness in my legs but I may get control over that with a low dose of hydromorphone and gabapentin. I need to move around. That’s a prerequisite for continuing to be able to move around. Being sedentary breeds inactivity and makes it harder and harder to get any exercise. Exercise hurts! Walking two kilometres brings on a lot of pain. Damn! 

And with the price of gas now, I think driving may be an even bigger pain in the ass than I’m feeling now in my ‘lower’ back. I feel that driving into Courtenay for a walk on the River Walkway is a bit frivolous when gas is $2 a litre. I can always walk around Cumberland for free. 

Tomorrow should be better for me in terms of pain. I expect I’ll walk a couple of kilometres tomorrow morning. The weather is supposed to be good. From Thursday on for at least a week it’s supposed to be rainy and cold. No reason not to walk, but it is less pleasant and I like pleasant these days. 

If you didn’t notice, and to end today’s musings, the title of this post works for some things, but not for life itself. Life never goes backwards, no matter how much we wish that it were so, no matter how many anti-ageing creams we use. 

My next post will be on why the penis and clitoris are such wondrous things and why they have so much in common. 

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*This is the strangest phenomenon. I would drag the handle of a kitchen knife over my arm and it would welt up for maybe three hours afterwards along the path of the draw. Has that ever happened to you? I’d like to know if you’ve ever experienced this. 

February 18 Update

[I’ve written about some of the issues I’m having with myeloma before, many times. Because it’s such a presence in my life I can’t help but write about it often. Sometimes, I write about it to provide an update on my treatments and side effects. That’s what this post is about. It’s somewhat technical, but you don’t have to know everything about the drugs involved to understand the thread of my story.]

I sit here in my chair warmed by our new(ish) mini-split HVAC that lives on the wall up to my left with it’s companion outside, visible from the large window just behind me. It’s just after nine in the morning and it’s cold today but clear with the temperature hovering around the zero Celsius mark. We have the wood stove on too because the electric heat just doesn’t cut it when the temperature gets near or below zero. 

Myeloma is always at the forefront of my mind, but now pernicious anemia, and my opioid dependency are butting in and taking up some space of their own in my consciousness. So, in this post I’ll discuss the challenges posed by these issues for me every day. 

I’m so conflicted these days I’m almost completely immobilized. My myeloma saga is putting me in a space where I’m not sure what to think. I’m off my chemo meds for at least one cycle, approximately a month. My local oncology GP as well as my consulting oncologist in Victoria can’t detect much myeloma protein in my blood, if any at all, so it seems logical to give my body a break from the meds. Fair enough. However, for the last 7 cycles the combination of chemo meds (lenalidomide and dexamethasone) along with the monoclonal antibody Daratumumab have effectively erased most, if not all, traces of cancer in my blood. I’ve come to appreciate the protection I get from these meds even though they produce some nasty side effects, peripheral neuropathy** in particular. Still, I know that myeloma will always return. The last time I went off chemo meds was some time ago. I was taking a lenalidomide* based cocktail at 10 mgs per cycle but then I got a severe abdominal rash and had to shut that down. 

After that, I was moved to a drug called bortezomib, along with dexamethasone, and cyclophosphamide. The bortezomib (Velcade is its trade name) had some horrendous side effects for me, threatening to put me in a wheelchair or worse. I quit taking these meds out of desperation, but found that soon my paraproteins were increasing rapidly in my blood. That scared the poop out of me. Time to make another move. 

That’s when I was switched back to lenalidomide (Revlimid is the trade name) but at a minimal dose of 2.5 mgs along with 12 mgs of dexamethasone and an infusion of some 500 mls of Daratumumab per cycle.  That’s the cocktail I just stopped taking. Next month I see my local oncology GP for another assessment. It will be interesting to see what my bloodwork reveals. I’d be lying if I said I wasn’t worried about it. 

To complicate matters, I’m trying to wean myself off hydromorphone (an opioid) and gabapentin , both are widely prescribed pain relievers. Opioid dependency is no picnic. I was first prescribed hydromorphone when I was diagnosed with myeloma in the fall of 2019. Since then the goal has been to fine tune my doses to get the maximum effect while leaving me more or less sentient. It’s been difficult. For some time now I’ve been taking two types of hydromorphone, a slow-release 3 mg capsule and a 2 mg ‘breakthrough’ dose. I’ve taken one 3mg capsule in the morning and two in the evening. Now, as I try to get off this medication, I’m restricting myself to one 3mg in the evenings and none during the day. Last night I thought I’d be tough and not take any meds at bedtime. Well, I soon got schooled by hydromorphone for trying to back off too quickly. By 11 PM I was downstairs into the medicine shelf getting a 3mg capsule to take. The thing is I was not prepared yet for a full withdrawal. My body let me know very quickly. The pain in my back returned with a vengeance, and I couldn’t stand to have anything against my skin. I was completely distracted by itchiness all over my body. Thoroughly unpleasant. I expect that as I restrict my intake of hydromorphone more and more, that I will have fewer pain issues. Ironically, opioids can contribute to pain, especially during withdrawal. 

The reason I’m trying to get off hydromorphone is because of the success we’ve had in dealing with myeloma. I’m thinking that with my myeloma symptoms under control, I may not need as much pain relief as when it was in full bloom. 

As far as the pernicious anemia is concerned, I should have my B12 up to acceptable levels. I’ve injected B12 (cyanocobalamin) eleven times now in the last six weeks. That should do it. However, it will take up to six months before I experience any kind of improvement to my health. It would be nice if I only had one issue to deal with but I think I have things more or less under control for the time being. 

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•For a list of common side effects of lenalidomide check out this website: https://www.drugs.com/sfx/revlimid-side-effects.html

**I am a member of a myeloma support group. We had a Zoom meeting last Thursday. We are all at different levels of treatment and on various medications but we pretty much all have one thing in common: peripheral neuropathy. The neuropathy in my left hand is now starting to interfere with my ability to type. Given that I write a fair bit, that’s not at all welcome.

75 UP

So, this post is about what’s up with me now. I’ve reconciled myself with the fact of my frailty, which I share with all living things. It stands to reason that my body is not as it was twenty or even ten years ago. All individuals of all species, plant and animal have a life course. We’re all born. Even trees, but some of those individuals die young (like the trees that are being cut in the hills above Cumberland), some trees live out what must be considered the outer limit of life’s potential, in the Carmanah Valley, for instance, no thanks to BC’s forest industry. Some of us humans die young. Some die hacked to death in a stupid race war in Rwanda in 1994. Others die horrible deaths in the ovens of Auschwitz. Still others, of all species, die of inborn problems, with their DNA or or whatever. In the end we are all frail, even the biggest and toughest among us, and vulnerable. For most plants and animals eventually, the soft, squishy material that we’re made of becomes increasingly brittle and inelastic as we age and approach our inevitable ends. My squishy material is definitely becoming worn out. It still has some bounciness in it, but nothing like it had years ago, and there’s no turning back. But on with the story.

Being one who kind of likes living (even given what I write above) I dutifully injected B12 into my legs (alternating left and right) once a day for a week mid-January and since then I’ve injected once a week.*That should replenish my B12 levels and keep me going. It may take some time for increased amounts of B12 in my blood to make a difference to my energy levels, but I can be patient as I know that results will come. Of course, I’m fighting a losing battle. We all are. Death will catch up with me regardless of how much B12 I inject or how many chemo drugs I take. I find it almost funny that we talk about medicine, police, firefighters, paramedics, etcetera as saving lives. The best they can do, in reality, is allow life to go on a bit longer, to postpone death. In any case, I have my B12 situation under control.

In terms of myeloma, I’m off chemo drugs for at least a month. Myeloma protein is barely detectable in my blood so this is a good time to lay off for a while and see how things go. It would be grand to get some relief from side effects for a time. Next month sometime they’ll check my blood again to see what the status of my paraproteins(myeloma proteins) are. I can easily go back on chemo if the bloodwork shows a rise in paraproteins. During our last phone call my local GP/oncologist uttered the word remission. I hope he’s right but only time will tell.

Another thing has come to plague me. It looks like it’s true that nastiness comes in threes. I’m getting a CT scan on Monday of my left jaw. I saw an endodontist a while ago because of excruciating pain in one of my left upper molars. He figures I need a root canal. Well, that’s probably true, but because I had a lesion in my left lower jaw that required radiation treatment earlier this year, I wanted some assurance that this issue with my upper jaw wasn’t also due to myeloma. It may be that I should be more trusting, but the symptoms caused by a myeloma lesion and a rotten tooth are similar so I just wanted a little reassurance. I got that when I spoke with an oncologist at the BC Cancer Agency in Victoria last month. She ordered the CT scan the results of which will determine whether I get a root canal or more radiation. My, my. Life can be complicated.

In the meantime, I’m back to doing some drawing. I got a very cheap but good set of coloured pencils for my birthday last month, so I did a couple of drawings. Here they are:

Christmas cactus head on view.
Christmas cactus side view.

I have one more I want to do with the coloured pencils using a different profile. Then I want to do a couple more in watercolour on proper paper, and maybe in acrylic on a large canvas. I’ll have to assess my level of energy before I undertake a large(ish) canvas, but I seem to be getting stronger every day now.

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*If you haven’t read my post from January 13, 2022, you might want to do so now. It outlines my experience with B12 deficiency and pernicious anemia.

Pernicious Anemia and Multiple Myeloma: A link?

Well, well. I should have known. Sometime before I was diagnosed with multiple myeloma in October of 2019, I was diagnosed with pernicious anemia. That’s a vitamin B12 deficiency that cannot be corrected by just taking a supplement. With a B12 deficiency, a dietary supplement can fix the problem, but pernicious anemia is a situation where B12 cannot be absorbed into the blood by ordinary means because of a missing intrinsic factor, a protein which is produced in the gut by gastric parietal cells. For me to get vitamin B12 into my bloodstream I need to inject it intramuscularly. I do it myself because I can’t be bothered to go to the Nursing Centre or somewhere where someone can do it for me. It’s a simple jab in the leg. No big deal, but for me it’s a life saver. As Martyn Hooper, the Founder and President of the Pernicious Anemia Society (PAS) in Britain, says it regarding his own experience: “Consequently, should I stop receiving injections then I would once again be unable to make healthy red blood cells and would gradually become anaemic and eventually die”*. Hooper was undiagnosed for years and has suffered permanent neural damage because of the delayed treatment. It’s a question of life or death. Pernicious anemia is called pernicious because it’s deadly. Just to add a bit of fun to it, it’s also incurable, just like myeloma. Towards the end of this post I specifically address the link between pernicious anemia and myeloma, but for now I need to deal with pernicious anemia.

As it turns out, I had been on monthly injections of B12 for years before about six months ago I let it slide. I ran out of B12 and just didn’t bother asking my GP for another prescription. Truth be told, I didn’t really feel as though the monthly injections were doing any good. Of course, my whole body was thrown into chaos by myeloma making it very difficult to pinpoint the source of any given issue I may be having, and there were lots of those. Frankly, I should never have stopped injecting B12, but it’s not going to do me much good to beat myself up about it. I’ve already spent enough time doing that.

About three weeks ago, after feeling like I’d been going downhill for some time, I called my GP’s office and requested a B12 blood test and a prescription for a new supply of it. This past Monday I went to the lab for my regular monthly blood workup in preparation for my chemo appointment today, but this time B12 was added to the assay. On Tuesday I got the results. No wonder I haven’t been feeling well, the level of B12 in my blood was way below the recommended amount. I came in at 84 pmol/L when the reference range is between 150 and 600. The literature I’ve scoured is inconclusive, but it seems that 150 is way too low for most people and 1000 is recommended by some sources for seniors to maintain good cognitive and neural health. In any case, my GP’s office contacted me this morning and told me that for the coming week I should inject B12 daily, for the following month, every week, and thereafter once a month. I’ll have to make sure the docs add B12 to my monthly blood assay so that I can ensure that I have the requisite amount in my blood. I think I’ll aim for 1000 pmol/L. If I can’t maintain that with a monthly injection, I’ll increase it to bi-monthly, etcetera. 

I haven’t conducted a scientific poll, but I doubt that most people know about how important vitamin B12 is for good health. B12 is crucial for the production of red blood cells. B9 (folate) is also important as is D3 but these can be easily supplemented. It’s worth doing an internet surf to find out more about B12 especially if you’re feeling chronically tired for no reason. I think the PAS is a great source but there are others, lots of them. The challenge is to recognize the stupid sites and not use any of their stupid suggestions or offers of stupid products. Make sure that if a site makes specific claims like methylcobalamin is better than cyanocobalamin get a second opinion. Martyn Hooper injects methylcobalamin twice a week (5mg/ml). It’s available online but it’s not cheap. He offers only one source for his assertion that methylcobalamin reduces peripheral neuropathy whereas cyanocobalamin doesn’t, and that paperis about ALS and methylcobalamin in megadoses. I generally trust Hooper, but we all make mistakes and sometimes we get headstrong about our own health and how to manage it. Hooper has good reason to be pissed at the medical profession, and the medical establishment in Britain and if you read his very accessible books you’ll know why.

Now we get to the fun part…the one with no conclusive argument: the relationship of pernicious anemia with multiple myeloma. So far, very little research has been conducted on the links between pernicious anemia and myeloma. This article does address the issue but is ambivalent in its findings as you can ascertain from this quote:

For multiple myeloma, increased risk was seen only with pernicious anemia, an inflammatory condition in the stomach leading to vitamin B12 deficiency. This association was also demonstrated in two other large studies, which found few other autoimmune conditions associated with multiple myeloma.1617 Because of the lack of association with other autoimmune conditions, our finding may point towards the involvement of vitamin B12 deficiency. Indeed, vitamin B12 deficiency has been reported in patients with multiple myeloma and in patients with the precursor condition, monoclonal gammopathy of undetermined significance.161946 Although multiple myeloma may cause vitamin B12 deficiency by consuming stored vitamin B12,47 we speculate that vitamin B12 deficiency could promote the development of multiple myeloma by causing derangement of one-carbon metabolism, as proposed in other cancers.48 2

See citation below.

This study3 shows a more significant association between myeloma and pernicious anemia: “Using a large population-based dataset, we observed a 3-fold significantly increased risk of MM among subjects with a personal history of pernicious anemia, which has been found in previous studies.” Now, that got my attention. It’s clear that I had pernicious anemia before I had myeloma – at least that’s what I think. However, because I wasn’t diagnosed with myeloma for a long time before I contracted the disease it may be that I had both pernicious anemia and myeloma at the same time. 

All I know is that pernicious anemia and multiple myeloma share a whole load of effects and they are both incurable and fatal if not treated. I’ll let you know how my current B12 therapy goes. Right now it’s being affected by today’s injection of Daratumumab. Oh well. I always liked a puzzle.

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* from: What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency by Martyn Hooper, Chris Steele)

1Izumi Y, Kaji R. Clinical trials of ultra-high-dose methylcobalamin in ALSBrain Nerve 2007:59 (10): 1141-1147.

2  Lesley A. AndersonShahinaz GadallaLindsay M. MortonOla LandgrenRuth PfeifferJoan L. WarrenSonja I. BerndtWinnie RickerRuth ParsonsEric A. Engels. Population-based study of autoimmune conditions and the risk of specific lymphoid malignancies. International Journal of CancerVolume 125, Issue2, 15 July 2009, Pages 398-405

3Ola LandgrenMartha S. LinetMary L. McMasterGloria GridleyKari HemminkiLynn R. GoldinFamilialcharacteristics of autoimmune and hematologic disorders in 8,406 multiple myeloma patients: A population-based case-control studyInt J Cancer 2006 Jun 15;118(12):3095-8.