Hematologist now...

[UkrainianTracksuit]

My husband went for blood work last week. It was a general requisition for a CBC and basic stuff. He had pre-surgical blood work prior and I guess that looked fine because no one said anything.

Well, now, his GP called to say (according to my husband) that "all his blood cells are out of whack." I asked for specifics but he didn't have any.  They've referred him to a hematologist. They are going to book him for a bone marrow aspiration and biopsy. That didn't blow my mind too much because I know they just want to see if it is healthy and it is sometimes done for basic issues like anemia.

The question that got me was that they asked him if he had a family history of leukemia. He said no, but then realized a cousin had it (bone marrow transplant and recovered now.) Not exactly a family history, but you know.

So wtf is going on here? Not like anyone knows but the unknown and his male lack of specifics has me worried.

[PrimeTimer]

Wow. I don't like the sound of this, UT. Hope they can provide you with more details. Seems like a bone marrow biopsy is an invasive test and that they'd have good reason to want to perform one. Maybe as a "process of elimination"? A Hematologist will get to the bottom of it. My husband was once sent to a Hematologist and his whacky labs at the time turned out to be nothing. Or at least not anything on the scale that they were thinking. Maybe that's what they are doing in your husband's case, just wanting to be thorough. Is the cousin that had Leukemia a first cousin? Just curious. Altho I don't know them I apparently have 2 first cousins who were also diagnosed with auto-immune disorders and I thought that interesting since there was no talk of any other familial history of such disorders. Of course, generations ago people discussed their various illnesses much differently than they do today. Back in the day people either had no access to a doctor or couldn't afford one and in a lot cases, didn't think they needed to see one. They just went about their business as if nothing was wrong and kept going until they couldn't and by then it would be too late to do anything about it. Times (and people) have indeed changed. So I am glad that your husband is actually having things looked into and by a specialist. I'll be thinking of you. Please let us know what you find out (if you want to share it). We're here for you. 

[kristina]

Hello Ukrainian Tracksuit,
I am hoping, that some mistake or misreading occurred with your husband's blood work last week, especially since his pre-surgical blood work not long ago seemed perfectly fine ?

Hopefully the doctors just want to make sure ... and I keep my fingers crossed and hopefully "things" go alright for both of you.

Take great care and best wishes from Kristina.

[UkrainianTracksuit]

Thank you for your thoughts and kind words, Pea Tea and kristina.

It would be really nice that his statement that "all his cells are out of whack" could have been expanded upon. Dealing with doctors, I know they must have mentioned the basics (red or white) or even leukocytes when- God forbid - leukemia was mentioned. Yet, when I asked "which ones?", he gives the caveman answer of "all of them."

While I truly hope it is a fluke like kristina mentions, I also know a bone marrow biopsy wouldn't be called for the heck of it. I am siding with Pea Tea right now that it is a process of elimination. One thing I forgot to mention in the original post was that a Vitamin D test has specifically been ordered (besides other blood work) and anytime I look up hematology and Vitamin D, oncology topics come up.

And yep, Pea Tea, it was a first cousin, but at the time everyone just chalked it up to the fact he lived/worked in the one of the most polluted cities in the world. They had to move out of there first so that he could get the bone marrow transplant, recover, and then somewhere "better." That sounds so easy to a lot of people, but it was a rough time for working class Russians. You do mention a really interesting point about family histories. I remember when my relatives lived in multi-generational housing that they spoke about health conditions in this person and that. That died out when the elders passed, but through extended family, I've had a handful of (older) family members also on dialysis and a second cousin with a kidney transplant. Never met him, but hey. My mother has gone as for to say if they had genetic testing back then, she wouldn't have got pregnant. 

Anyway, I've hold him not to tell his mother until he knows for sure. That means after he gets booked for the biopsy. This will make me the evil one at the end of the day, but it is better than making her worry over his vague information right now.

[MooseMom]

What?  WHAT??

[PrimeTimer]

I agree with you, UT. Better to wait to tell his mother. He doesn't need (and you don't either) any added stress from a worried mother (and any other family members she tells) who will probably ask a million questions that he can't answer right now. I know this won't sound right but hopefully he is just anemic and it's nothing else. Maybe because he is Russian and a first cousin had Leukemia they want to rule it out. And over time a low Vit D level can affect bones so I imagine when it does that it can affect marrow. For instance, with my having Sarcoidosis they also have to watch my Vit D levels, plus of course the Prednisone I've been on for over a year can start affecting my bones and marrow. And speaking of Prednisone, does hubby take any kind of steroids for muscle building? Sorry, didn't know how else to ask that, you don't have to answer if too personal. But we all know what steroids can do. These days I am as white as a sheet...I haven't been able to even walk outdoors and I know my Vit D level had been low months back. I was on prescription strength but need to follow up and haven't been able to yet. I fear what the low level (and prednisone) might be doing to me. Is hubby pale or gotten more pale? I imagine a lot of people have just from being on these Covid lockdowns and quarantines. Probably by next year the whole world will need some extra Vitamin D. The beaches and parks are going to be crowded...

Please keep posting and tell us how you are doing. Sending positive thoughts and prayers your way.     

[UkrainianTracksuit]

Agreed about his mother. She would blow the whole situation out of proportion. She'd demand answers and there are none at the moment. You know, it's -43 C where they are right now and I think she uses drama to keep them warm.

I'm in line with your thinking that I am hoping it is something like anemia or something else not so bad, but I guess still bad enough. It's odd that I'm hoping he has an infection even though I know that can lead to sepsis (which is deadly). We should get a call any day now for his appointment time, but we also have new stay at home/state of emergency orders due to corona, so I have no idea. It's not funny, but it is, in that he is scared the procedure is going to hurt.

Nope, he doesn't take any steroids for muscle building or any supplements. And thank goodness, if he ever was one of those "bro types", I'd have divorced him! He doesn't take any medications as he has been healthy as a horse. That's often how some of the great horses have gone down though. He does drink regularly, but not to "problem drinker" limits. Since legalization, he smokes pot from time to time too. And it's totally fine to ask these questions!

And yep, he has been cooped up a lot so he is paler than usual. Usually, during the winter, he has his winter sports that get him outside, but even that is not possible because his shoulder is healing. And to be honest, it is taking forever to heal, even the incision wound. The other weird symptom he reports is that his mouth tastes like salt all the time. On its own, not a big deal, but that also hints at oral bleeding, and we all know what they say about bleeding gums and leukemia. Not going to jump to conclusions though.

Thank you for the kind thoughts and prayers. Heaven knows we need them.

[UkrainianTracksuit]

Well, tomorrow is the big day. Booked for his biopsy and aspiration at the hospital tomorrow. Sucks that he has to go alone because of corona. Hopefully, though, that means answers will come soon.

[kristina]

Best of luck wishes to you both from Kristina and take good care and hopefully the biopsy goes well!

[MooseMom]

How did things go, You Tea?

[UkrainianTracksuit]

Hehehe, You Tea! Love it as long as it's not You Tea Eye!

Thanks for asking.

It was rougher than I thought it would be although I completely understand the procedure. How dumb of me.

He obviously misinterpreted the instructions or didn't understand them. He drove there when he should have had a ride. But that's a headache for another time...

He had IV sedation so he's out like a light for now. Tylenol for pain. No bathing for 24 hours. We have to be on the lookout for heavy bleeding (we were warned it is a distinct possibility with his CBC results), drainage, worsening pain and a fever. He has to take is really easy for a couple days, but then a general take it easy for a week.

So, a week away from physiotheraphy for his shoulder. When it rains, it pours. Ha!

And oh, more blood was pulled. Hopefully the results come sooner rather than later and this is all just one big giant non-cancerous or "nothing serious" medical mystery. My nerves can't take it. 

[MooseMom]

I'm glad he made it back home in one piece and is now in recovery mode.  I hope there are no nasty side effects from the procedure.

But, doesn't this seem so, well, random?  I mean, this has just come out of the blue, you know?  I'm still rather shocked by all of this, so I can well imagine what YOU must be feeling!  I am REALLY curious to find out what's going on, if anything.

I hope his physiotherapy is helpful.

Thanks for the update, and keep 'em coming.

[UkrainianTracksuit]

Yes, it IS indeed so very random and out of the blue. That's why I hope it's all just a big fluke in blood work results.

At any other period of time, I would think, "Well, he doesn't go to the doctor at all" so while it would be a shock, it wouldn't be so...shocking? It's more of a shock because he had indeed had pre-surgical blood work to check clotting and platelets. That had to have been "normal", right? No one said anything.

It's just when he went to his GP for a wound check-up/general check up for the first time in 500 years. I think he's only seen this GP twice (maybe three times?) since his time in the country. He didn't feel doctor appointments are necessary if you feel fine.

To be honest, I don't know what to think at all. Half in the camp that it's all a big mistake and the other half in "I hope it's nothing serious and since he doesn't have a lot in his medical file, they just want to narrow things down."

[enginist]

It's been a month with no followup.  What happened?

[UkrainianTracksuit]

First of all, thanks for checking in. As well, thanks to the special person that checked up by sending a PM.



I do apologize for leaving this all up in the air. Not that the internet needs to know but we did have some marital troubles where my husband left the house for a couple weeks. Long story short, he disregarded my wishes and told my boss off for overworking me. I told him that was NOT the work culture or the gender culture here where a man speaks for a woman, but that was like talking to a rock. So, we were at each other's throats to the point he stormed off one day. It's all good now though. But, I didn't have the energy or drive to talk about him...

Yeahhhh....

Good news first: No leukemia. Absolutely nothing oncological related at all. My husband did have a freak out moment though because his meeting at the hematologist was a day when the waiting room was full of cancer patients.



However, he did receive a diagnosis. It's not a serious one, but still, it is something. He has severe chronic inflammation that has been given the diagnosis of polymyalgia rheumatica (PR). Because of this, he will have to be followed by the hematologist and a rheumatologist. It is a bit of an odd diagnosis because it doesn't happen often to people under 50 and he doesn't have any symptoms besides muscle pain. We always thought it was simply wear and tear of the body.



The funny thing is that this does manifest in blood work by wonky white cell counts and it can be confused with cancer. No one particularly knows why it happens, but genetics and environmental factors are the biggies. Environmental factors have been singled out here as he did check off some boxes. Mainly, he had a bad case of osteomyelitis in his past life due to a wound, and sometimes virus/bacteria can kick off that immune response.


The secondary aspect of this is that a lot of people with PR are also diagnosed with temporal arteritis. This is more serious out of the two. He has to have follow up tests but they are not a priority because he isn't even close to the age that it shows up (around 70). But more on that later.... 



He is also significantly Vitamin D deficient. That's probably my fault. 



Anyway, the treatment for PR is low dose steroids (prednisone). He refuses to take them because of the side effects and hasn't taken a single dose. To get things under control, the doctor prescribed a high dose, and then he would be on a maintenance of 20 mg/day. But, my husband is one big no-no-no when he read all the things that the steroids could interfere with. This has led my husband to belief that perhaps the doctor doesn't know what he's doing and his body is this way because it has been through the mill. Granted, I give him that point, but the inflammation levels are consistently high. 



The other thing is that the risk for temporal arteritis is extremely low right now, but it has been requested that he have an eye exam and then referral to an ophthalmologist get a baseline right now. Why? Something like a quarter of people with this disease go blind. My husband won't go. He says that when he went for his sniper recertification? updating? (no idea about these things, and he doesn't even use those skills here) his eyesight was perfect, so what would change in a matter of a few years? 


He does take his Vitamin D supplements so there's that. Yay.



I'm glad the big scare is out of the way, but now it's just dealing with a nagging and chronic thing.

[Michael Murphy]

Years ago I was sent in for a echo cardiogram since I was overweight and starting a diet,  during the test more and more people came into the room and they kept looking at the screen.  It turns out that during the test first they find the gall bladder then they find the heart.  Well my gall bladder was difficult to find since it was full of stones.  My doctor insisted I visit a surgeon ASAP.  Now I was nervous about all sort of thing bu I went to the surgeon who look at the test and said to me “does it bother you”  I said no.  He then said “come back when it does”. Thirty years later still have not been back.  The one thing I have taken from this is as you age any test will find something strange.  Now a days l expect every test to bring a dire result.  But with the exception of two heart attacks and kidney failure all the dire test results have not effected my life.

[MooseMom]

You're never obligated to share anything with us, You Tea.

I'm glad things are better between the two of you, but I am sorry that your husband has to deal with anything chronic.  That's just a very strange diagnosis, and to be honest, I'm not really sure what it means.  I will have to read your post several times before it sinks in.  Thank you for the explanation.

It is in situations like this where spouses just don't really know what to do.  Do you worry on your spouse's behave when s/he doesn't seem to want to be vigilant about their health, or do you just let it go to save yourself? 

Chronic inflammation scares me.  That can be the genesis for all sorts of degrading effects on the body, but I can understand not wanting to gobble down prednisone for a condition you can't yet "see".  Then again, we transplant patients gobble down all sorts of stuff to ward off rejections we cannot "see", so I have a biased opinion on the topic.

Thank you for the update.  Again, you are not obligated to provide one. 

[UkrainianTracksuit]

Hi MM,

To be honest, it doesn’t really mean much or change his life at all. If he chooses to do nothing, he just has to live with muscle pain and stiffness. It’s just a case of the immune system “attacking” healthy tissue, without any real deformity (like rheumatoid arthritis) or effects on the organs. The treatment (prednisone) just knocks the whole thing into remission, so no muscle pain or tenderness. A better quality of life.

This has been going on for awhile, but we overlooked it because well, he has been sporty all his life, and he’s getting old. He’s not 50 yet, but he’s closer to it than a young man.

For the last months though, he complained a lot that his buttocks was tender, sore, and I just laughed at him.

I didn’t know that was a main muscle group for inflammation. So, with his upper body, hips and blood work, I guess he really was sore.

To be honest, I’m not worried about him. He can make his own decisions and it’s not life or death. If he wants to have chronic pain and stiffness because he doesn’t want to take a common medication, that’s his decision. Your view is correct on this — we don’t know what these mysterious drugs do, but they do something, and the fact we are well enough leads to our judgement. As well, doctors mostly know what they’re doing! 

All I can do is cook him salmon and lots of oily fish.

[enginist]

I know it isn't funny, but I had to laugh.  Your guy is almost a caricature of the tough but stubborn Slavic male.  He's been active all his life in hockey and the military, and that's his identity.  As for now, he's in denial.  But if his condition worsens and he finds he can't play hockey without popping a few pills, I bet he ends up taking the pills. 

[enginist]

P.S.  Tell him he gets you fired, you'll make him eat a hockey puck.

[UkrainianTracksuit]

P.S.  Tell him he gets you fired, you'll make him eat a hockey puck.

I'm actually surprised that I didn't get fired.

In the grand scheme of things, I understand why my husband interfered, but it wasn't the right thing to do. Last year, I ended up being hospitalized from lack of sleep and overwork. The same thing was creeping up and my husband told me that I had to tell my boss to spread out some of the responsibilities. I wasn't quick enough  . I had to deal with a contact in Jordan (which is a pain to contact by telephone btw), at their best hours, and the guy on the other end of the line was a total... well, rude person. That was the last straw for my husband.

My boss has significantly cut my work load  and I will probably be on the way out by summer. My husband doesn't understand that being fired looks bad on a CV.

Your assessment is right on. He's in denial and this conflicts with his identity. Not that he is at mid-life crisis level yet, but he doesn't want to lose chunks of his hair, get a moon face, or get fat in general. He's most concerned about breast development as well as loss of sexual stuff. I told him that that's not necessarily what will happen, but he's in his mental man cave now. He won't listen. 

[kristina]

Hello UkrainianTracksuit,
Many thanks for your update and I am very sorry about the diagnosis. Hopefully the soreness and muscle pain get under control with the right medication? But ... since this inflammation might be a result of a flare-up,  I wonder, whether your husband is under some stress at the moment? I have been reading that stress is often a factor to bring-on flare-ups of the disease and, in order to avoid flare-ups, special personal ways need to be found to find out ways of stress-avoidance as much as is possible and to try hard to find ways to avoid stress as much as is possible.
I wish you both all the best and send my kind regards from Kristina. 

[MooseMom]

UT, I got curious and did some research into your husband's diagnosis.  It certainly hasn't made me into an expert, but a thought did occur to me regarding the use of steroids as a treatment.

The kidney disease I have, FSGS, is essentially a chronic, inflammatory disease.  For whatever reason, my kidneys become inflamed and then scar over (the "sclerosis" of the name), and the scarred tissue cannot filter blood.  So, my kidneys eventually become just great big scars.

I was treated with cyclosporine, and it wasn't until I joined this group that I learned that most people are treated with corticosteroids, not with an immunusuppressant.  I eventually asked my neph why he took this course of treatment instead of the steroid path, and he said he wanted to spare me the side effects of the higher doses of steroids that would be required.  So, he chose to dampen my immune system instead of choosing to reduce the inflamation.

It makes me wonder if maybe a smaller dose of steroids combined with an immunosuppressant might work for your husband.  (Just thinking out loud, here.)

[UkrainianTracksuit]

But ... since this inflammation might be a result of a flare-up,  I wonder, whether your husband is under some stress at the moment? I have been reading that stress is often a factor to bring-on flare-ups of the disease and, in order to avoid flare-ups, special personal ways need to be found to find out ways of stress-avoidance as much as is possible and to try hard

Hi kristina!

You make an excellent point. My husband has a medium amount of stress normally as he travels for his job as well as all little things compounded. But definitely, during the pandemic, he is more stressed than usual. A lot of places that he would go to burn steam have been closed. As well, with his shoulder still in the "light work" phase, he hasn't been able to do some of his regular activities. Add in debating whether to sell the house and move! One thing rolls into the other, so while it may seem like small stressors, they build up. And you're right, it is a change of personal habits that addresses this!

It makes me wonder if maybe a smaller dose of steroids combined with an immunosuppressant might work for your husband.  (Just thinking out loud, here.)

Hey MM,

You are right about this! In similar conditions, like RA and psoriatic arthritis, they do use immunosuppresants! Cyclosporine and azathioprine are used. Another biggie is methotrexate. Prednisone is prescribed because it is the cheapest and easily accessible option that addresses the condition, but it's not exactly a fun drug.

My husband reminded me that he took prednisone for a short round (like it was under a week) for a whole other matter (and acute, rather than chronic) and it was not pretty! But, that was like 50 mg.  He should have a chat with his doctor and just see what his options are... I mean, there have to be alternatives, such as those with an allergy to prednisone?

[kristina]

As well, with his shoulder still in the "light work" phase, he hasn't been able to do some of his regular activities.

Hello UkrainianTracksuit,
Does your husband receive medical assistance for his shoulder?(scarf)
Of course, I am not medical and don't know any details, but I remember when my husband dislocated "something" in his shoulder whilst enthusiastically approaching a difficult golf-shot, he used as healing-assistance anything that might help to create constant warmth around his shoulder, including an angora-jacket-shawl (scarf) and this eventually assisted the healing process, which unfortunately took a very long time anyway ... but please ask your doctor first ... and I send you both my best good-luck-wishes from Kristina...