Should I be worried

[Lurk De-Lurk]

My husband has tentative/probable dx of MDS and has been on watch-and-wait status since December. He gets his next blood tests next month. His RBCs, HGB, and HCT have been consistently out of range for years, WBCs intermittently so, and platelets low but have never been caught out of range on a test, though he's had bizarre bruising episodes in the past (i.e., before the oncologist hematologist started following him).

Recently I gave him some ... love bites. This is something we both mutually enjoy occasionally, ahem. So I give him some love bites, on his upper arm. And he immediately bruised up, quickly and severely. So much so, I couldn't believe it was from me. It looked like he'd been bitten days ago. There was a lump underneath, and clear tooth marks, and ugly red and blue.

We got into an argument because I just couldn't believe I'd done that to him then. I've given him similar gentle love bites in the past -- and he's given them to me as well -- and never had this effect. I did not bite him harder than usual. So, for "science," I bit him again, same way, then bit my own arm with exact same pressure. Within seconds the bite on him developed into severe redness and bruising. But on me, it left only a faint redness which was gone within an hour. NOTHING like what it left on him...

This is totally new. Of course, no more love biting in the future...

But my question is... What does this mean for his MDS? Should we get his blood tests moved up? Is this possibly a platelet factor? Or what?

[DanL]

Lurk,

When platelet counts get low, it is common for a person to get hematomas (large bumps under the skin) from fairly small impacts, probably including a love bite. The hematoma comes about because you are essentially bleeding underneath the skin until enough platelets accumulate to stop the bleeding. If you have fewer platelets or platelet function is impaired, as is common in MDS, then hematomas tend to be more frequent.

Other potential causes: drinking alcohol, taking aspirin, having a lot of fluid in your system, too much vitamin e or fish oil, certain foods like mass quantities of blueberries or ibuprofen can also have an impact on platelet function.

If bruising gets much worse than it has been, it is not only ok, but probably advisable to contact the hematologist and get a blood test. For me, there is a significant difference between having 20,000 platelets and 50,000 platelets, and even more so when you hit 100,000. You can live well at all levels, but you have to be aware of the impact on your daily activities.

Hope this helps.
Dan

[Lurk De-Lurk]

Thanks for your response, Dan. His next round of labs are in another week or two, and appointment is coming up after that. This time, he's agreed that I can attend with him for support and hear from the doctor myself.

He's also now having tingling (painful) in his lower legs. He's had this in the past but it's back again. Also he's losing weight, despite eating normally. He won't get on the scale for me, but his pants have been falling off of him lately.

New symptom: cognitive problems. For example, the other day he was brushing his teeth and instead of spitting in the sink, he spit on the floor. Then this morning he was leaving the bathroom and was on his way to get dressed, but wound up in the kitchen and didn't know why. He said it was like he just forgot or spaced out.

He's only 52; he's normally quite sharp mentally. This new symptom is particularly alarming to him. It's alarming to me, too. He's always said that when you age either your mind or your body goes, and he hopes his body goes not his mind. He's the one who's smart enough to figure out all this medical stuff, not me. He's usually my memory and brain, rather than the other way around.

It would be great if this forum could give me a list of questions to ask his doctor when we go to his next appointment, so I am prepared.

[Marlene]

Find out what his b12, folate, copper, zinc, iron, MMA and homocysteine levels are and be sure to get the lab report of the numbers. Many doctors dismiss a low-normal B12 and shouldn't.

Is he on any medications or any OTC products for acid reflux?

Sub-optimal B12, folate and copper can cause both hematological and central nervous/cognitive issues.

[Lurk De-Lurk]

Originally Posted by Marlene

Find out what his b12, folate, copper, zinc, iron, MMA and homocysteine levels are and be sure to get the lab report of the numbers. Many doctors dismiss a low-normal B12 and shouldn't.

Is he on any medications or any OTC products for acid reflux?

Sub-optimal B12, folate and copper can cause both hematological and central nervous/cognitive issues.

Hi Marlene, He's been on B12 shots for a couple of years now. His last labs said his B12 was in the 900 range. His last shot was only two weeks ago so I expect his B12 is fine.

His folate was over 20 (that was in October). Don't see anything about copper, but he does take a multi-vitamin every day.

No OTC meds for reflux.

[Marlene]

I'll send you a PM/email for some things to look into or consider regarding B12 and folate. It may take a few days though.

[riccd2001]

As always YMMV for MDS patients, but I find that low Hgb (<50 g/L ) can result in episodes of temporary "fuzzy" thinking actions.

How low is his current low Hgb? Do you really know?

[Chirley]

I suggest an urgent copper and caeruloplasmin level.

[Lurk De-Lurk]

Originally Posted by riccd2001

As always YMMV for MDS patients, but I find that low Hgb (<50 g/L ) can result in episodes of temporary "fuzzy" thinking actions.

How low is his current low Hgb? Do you really know?

His last labs were back in October.

HGB - 12.8 (14.0 - 18.0)

In my googling today I found a study that suggested that cognition problems may occur when HGB dips below 10. Here's the article:

http://onlinelibrary.wiley.com/store...uca78&a84e19eb

[Lurk De-Lurk]

Originally Posted by Chirley

I suggest an urgent copper and caeruloplasmin level.

Had to look up caeruloplasmin.

How are those related to MDS?

[maggiemag]

Hi Lurk. I am not a doctor but it sounds like something completely unrelated to MDS may be going on. And I am surprised he last had labs in Oct. My heme/onc is obsessive about labs. Even with an Hb as high as 12 she would have me come at least every 6 to 8 weeks. It sounds like he needs a full chem panel including liver enzymes etc. Make sure they give him a good going over. I agree the situation sounds concerning, but hopefully whatever it is can be quickly identified. Keep us posted, please.
Mags

[Chirley]

Low copper and caeruloplasmin can cause a reversible MDS. They can also cause peripheral neuropathies (tingling and pain in feet/ legs fingers/arms) and brain damage/cognitive problems as well as optic neuritis etc. The treatment is copper replacement. If left too long the damage may not be reversible.

[Lurk De-Lurk]

Originally Posted by maggiemag

Hi Lurk. I am not a doctor but it sounds like something completely unrelated to MDS may be going on. And I am surprised he last had labs in Oct. My heme/onc is obsessive about labs. Even with an Hb as high as 12 she would have me come at least every 6 to 8 weeks. It sounds like he needs a full chem panel including liver enzymes etc. Make sure they give him a good going over. I agree the situation sounds concerning, but hopefully whatever it is can be quickly identified. Keep us posted, please.
Mags

He's been seeing the heme/onc for about 2 years now. He's had anemia for as long as we've been together (11 years), but it would come and go, along with mysterious periods of unexplained, extreme bruising. He's never had any labs when the bruising happens. His mother has a history of similar bruising so he's always figured it's genetic.

His GP finally sent him to the heme/onc because of the anemia and the fact that it seemed his WBCs and RBCs were all slowly but steadily dropping. (The WBC's have never been caught below normal - they are just barely within normal range but have shown a slow downward trend too). First his GP gave him a colonoscopy and an MRI and a bunch of other tests to rule out other causes.

He has had a lot of labs these past two years while they worked at getting his B12 up. (I also have a B12 deficiency but caused by long-term use of reflux meds; it took me only a couple of B12 shots to get mine to 900; it took him a year of biweekly shots + high sublingual daily B12 + high iron diet).

Meanwhile everything else is normal -- he is basically in excellent health for his age, except for his RBCs, HGB, and HCT which are consistently below normal.

He dragged his feet on the BMB (he was supposed to have had it last April), finally having that in December. He is terrified of doctors and big needles not to mention bad news, but he was feeling crappy enough that he finally conceded to have the test. Another reason he dragged his feet is because we've had several deaths in the family this past year, so hubby has been dealing with grief and estate issues and caring for his mom who's in a long-term memory care unit. His plate is full, but also he is just really terrified and in denial.

The BMB result: "probable" diagnosis of MDS, no chromosomal abnormalities, watch & wait. Doctor said "let's see how it goes for a few more months; if there's no improvement, then we'll entertain a dx of MDS." And that's where we've been since December. He's continued to have his B12 shots, but next labs weren't scheduled until this month. Based on these next labs, he may be having another BMB.

I was not at his last doctor's appointment so I am getting this second-hand. Hubby's kind of stubborn but I've got him to agree I can join him at this next visit. According to hubby, his doctor never mentioned anything about staging. From this group and my googling, I take it that no chromosome abnormalities puts him in the very low or low risk category, which is good news, and probably the reason the doctor is being conservative and just watching and waiting.

From what I'm reading, he could go on like this for years and even decades, no? That is the good news, but also bad news because hubby feels so crummy. With the next round of tests coming up he's worried that they'll find it's progressed. We are dealing by distracting: have been traveling a lot and are about to go off on another trip to take his mind off things.

Sorry for the novel. Glad this forum is here.

[Lurk De-Lurk]

Originally Posted by Chirley

Low copper and caeruloplasmin can cause a reversible MDS. They can also cause peripheral neuropathies (tingling and pain in feet/ legs fingers/arms) and brain damage/cognitive problems as well as optic neuritis etc. The treatment is copper replacement. If left too long the damage may not be reversible.

I'm going to guess that they have already tested for this, but I'll ask hubby to double check on it.

He's had the peripheral neuropathy on and off for a long time, since before he was referred to the heme/onc. As I mentioned above, I also had a B12 deficiency (for different reasons) and I also got the stocking/glove tingling in the hands & feet. We compare notes. His sounds a lot worse. Mine is just tingling that comes and goes like a pulsating sensation and feels more like it is just under the surface of the skin. Whereas his he describes as a deep bone ache (within the long bones of his legs and arms), and it doesn't come and go, it persists and goes deeper and it can get painful rather than just annoying or uncomfortable.

The cognitive problems seem to be more subtle. I.e., I don't notice it - he has to tell me he is having these brain glitches. Though I guess he has seemed spacey lately, but that's when he gets all pale and fatigued. He bike commutes and sometimes he'll walk in the door after his 30 minute ride and he looks like a ghost, drained of all color.

Optic neuritis - I think his eyes are okay. He's never mentioned any problems.

I'd really like to know what he weighs right now. As a bike commuter he's always been fit and trim, and especially muscular in his lower body. I have noticed over this past year he's been losing that muscle. As I said, his pants are falling off of him. And it's not for lack of calories because I've been making sure he eats extra.

[bailie]

Be very careful with "the watch and wait". It sounds comforting, but can be very problematic. I felt great when they found my MDS. I happened to be at the emergency room with a kidney stone issue when they found my MDS. I wasn't tired or anything. But if I would have waited a couple of months I would have been in real trouble. It is very important to be "ahead of MDS" rather than reactive or late.

[Lurk De-Lurk]

Saw the doctor recently. His numbers have dropped again, but are still not quite low enough for an official MDS diagnosis. However the doctor now has him on monthly monitoring. Also, he's lost 10 lbs-- the reason his pants are falling off him lately.

While we wait for the next round of labs, today he suddenly doubled over in pain, and thought he cracked a rib. He wasn't doing anything strenuous at the time. He keeps insisting he's fine, but I see him wincing. I made him promise to go see the doctor if it doesn't improve over the weekend.

Is rib pain common?

[Cheryl C]

Part of the process of being diagnosed with MDS for me included a CT (or MRI?) scan of my body from the top of my head to the tops of my legs. I'm assuming that this was to eliminate diseases like multiple myeloma. Severe bone pain can be related to MM so my strong advice is to have that symptom checked out ASAP.

When I had excess blasts I used to get some niggling pain in my ribs, shoulder and shins but it wasn't severe. Others on this forum have also reported bone pain symptoms.

[Lurk De-Lurk]

Originally Posted by Cheryl C

Part of the process of being diagnosed with MDS for me included a CT (or MRI?) scan of my body from the top of my head to the tops of my legs. I'm assuming that this was to eliminate diseases like multiple myeloma. Severe bone pain can be related to MM so my strong advice is to have that symptom checked out ASAP.

When I had excess blasts I used to get some niggling pain in my ribs, shoulder and shins but it wasn't severe. Others on this forum have also reported bone pain symptoms.

They gave him an MRI last year, but only of his brain. This was to rule out MS, which runs heavily in his family. This was around the same time they gave him his 3rd colonoscopy to rule out internal bleeding as a cause of his anemia.

Lung cancer also runs heavily in his family -- yesterday we attended the funeral of his uncle, who died of it. I got a lot of detail about his family history yesterday: several cases of lung cancer; brain cancer; several MS; polymytosis & lymphoma (not sure if Non-hodgkins or other); skin cancer (several cases); breast cancer. Some of these cancers were very rare types. Some of his relatives had multiple forms of distinct cancers (i.e., one relative had lung, brain and skin cancer and none of the three were related/metastic).

Hubby does not have a cough but he does have a lot of SOB lately, which we've assumed was from the anemia. And now this rib pain. He has had pain which he describes as "deep in the long bones" as well -- but it comes and goes. He's a non-smoker but grew up in a household of heavy smokers.

I don't think his rib pain is niggling. He seems to be okay walking around/standing upright, but he's wincing and acting gingerly every time he gets in and out of bed. About 18 months ago he broke his rib (he was in a bicycle accident). He says he feels like he's re-broken it. But he wasn't doing anything strenuous at the time to break it -- I was there -- he had just leaned over to pick something up off the ground, then he was walking to put it away, took a few steps, and doubled over in pain, nearly losing his balance because it hurt so much. It's the right side lowest rib, if that means anything?

His next doctor's appointment is in two weeks. I have made him promise if his rib still hurts tomorrow, he'll go in earlier.

Hubby is very frustrated. I am frustrated too. The doctor seems not so concerned, since his numbers -- while continuing to drop -- are still not low enough for an MDS diagnosis, though doctor thinks it's headed in that direction. We are frustrated because despite the numbers hubby just keeps feeling worse and worse.

Something IS wrong with him. The weight loss is particularly alarming to me. He's always been slim but this is ridiculous. He's losing muscle mass, not fat (there was very little fat to lose to begin with).

I think it's time for a second opinion, no?

[bailie]

From the BMB, what was his blast percentage?

[Lurk De-Lurk]

Originally Posted by bailie

From the BMB, what was his blast percentage?

I assume they were normal. I don't have a copy of the report handy. I know they said he showed no chromosomal abnormalities.

It's his HCT that's dropped since his last round of labs -- from 37 to 30 and that's concerned his doctor enough to bump his monitoring up to once a month. Also, his B12 dropped from 900 to 400, despite B12 shots + massive daily sublingual doses. His RBCs and HGB are both out of range and have been for a long while -- but remain steady/ have not dropped any further.

So the HCT & B12, plus a 10 lb weight loss, were the only measurable / quantitative things that have changed since October.

As his wife of 15 years, that 10 lb weight loss is particularly alarming to me. I know what he eats. I know he's not been trying to lose weight. I see what he eats. He hasn't lost his appetite, and he's eating quite well. He eats breakfast -- something he didn't use to do, but he has some nausea lately (he thinks it's from the sublingual B12) and eating something in the morning helps it. He eats a sandwich or sub for lunch at work. He then eats a big dinner, and often finishes off half of mine too. We are deliberately eating a lot of calorie-rich foods lately, and way more red meat than either of us like since all of this started. Oysters, burgers, steak, etc. Because I've been making an effort here and we share meals, I've gained 15 lbs myself -- and yet his pants are falling off of him!!! I'm going to have to buy him new ones -- with a 30 inch waist?

[bailie]

The blast percentage is extremely important to track, perhaps the most important item when discussing trends in MDS. There are many factors involved in an MDS diagnosis. Keep track of the blast percentage.

[Chirley]

RUQ pain, skewed blood results, weight loss and nausea can all be caused by a liver problem too. Has he had a liver scan?