Paint

[Lurk De-Lurk]

Hi there I signed up over a year ago when my husband first starting seeing the hematologist because something was amiss. After 14 months of watch & wait and tests, he now has an official MDS diagnosis. He is 51. Prognosis seems okay as we continue to be on watch & wait for now.

He's not a forum or support group kind of guy so he won't be posting here, he is sitting next to me as I type this though.

In my googling something struck me -- the environmental connection. Paint factory workers.

Hubby never worked in a paint factory but growing up he frequently swam in a local pond that was later declared a superfund site -- due to nearby paint factory. All these years later, you can't swim in it.

Do you think there might be a connection?

Has anyone pursued this line of thought, and if so, do you have any research studies?

It probably makes no difference but I'm still curious.

[bailie]

LDK, you bring up an important point that I have noticed missing in MDS research. I expected to fill out some kind of a comprehensive survey concerning environmental influences for MDS. It seems so simple and I would think that most people would gladly complete a survey. If every person filled out such a form it seems reasonable that it would be very informative. I was in Vietnam, but I really doubt that there was any connection.

[bailie]

One other question, what is "watch & wait"? I struggle with that term because it is so important to have a stem cell transplant (if that is the end game) in optimum health. Does "watch & wait" mean when things get worse they will start treatment?

[Neil Cuadra]

Lurk De-Lurk,

The chromosome problems associated with MDS could be spontaneous abnormalities that result from cell division errors, but it's known that they can also result from toxic exposures. And what's more toxic than a Superfund site?

Scientists, or more correctly statisticians, can look for correlations, such as the rate of serious diseases among people who lived near that pond. They could certainly do surveys as bailie suggests. But they can't do the typical types of clinical experiments to show cause and effect, since they can't purposely expose test subjects to those toxins.

Many MDS patients have their suspicions about possible environmental causes, and it's natural to wonder if you're right, but at the same time we have to concentrate on what's ahead of us and how to stay healthy or get better.

[Lurk De-Lurk]

Originally Posted by bailie

One other question, what is "watch & wait"? I struggle with that term because it is so important to have a stem cell transplant (if that is the end game) in optimum health. Does "watch & wait" mean when things get worse they will start treatment?

Hi Bailie, we've basically been watching and waiting the last two years or so, since referral to hematologist, who only just did the BMB recently. He's been having B12 shots once a month and lab tests about every 3 months. His numbers are fairly stable -- have not really budged. Haven't improved - but haven't crashed either.

His doc is saying to continue to watch and wait for now, though EPO or a transplant may be in his future. For now they want to continue with B12 shots and watching his labs to see what happens.

Whatever's going on with him, it's slow progression. And we hope it stays that way.

To give you an idea how slow, he's actually been tracked by his GP for about 8 years, treated for anemia, but also during that time would periodically have other low numbers along with mysterious bruising and such. The numbers across the board have been steadily going down all these years. Then about two years ago the GP referred him to a hematologist, who's been tracking him ever since. 14 months ago I googled his lab results and it led me to this forum, as it seemed AA or MDS was most likely match.

Then I put it all out of my head figuring if the doctors weren't rushing a BMB, why should I borrow worry? Heh.

[Lurk De-Lurk]

Originally Posted by Neil Cuadra

Lurk De-Lurk,
Many MDS patients have their suspicions about possible environmental causes, and it's natural to wonder if you're right, but at the same time we have to concentrate on what's ahead of us and how to stay healthy or get better.

Agree with you of course, but it also gives my mind something to focus on while we watch-and-wait. Also, I want to keep him away from that pond next summer.

[PaulS]

Hi - I haven't found it helpful to ponder how I might have come down with MDS. Ultimately everyone gets something.

The course of the disease seems different for everyone - if your husband is low risk and progressing slowly then watching and waiting is the best course - that can go on for years. As your husband is relatively young, a SCT may be appropriate down the road - but only if counts or marrow changes - otherwise I believe the risk of a transplant outweighs the benefits. I watched and waited for over two years - my Dr. told me of patients she has who were relatively stable for many years longer - unfortunately that wasn't me and my counts started dropping and I have just started Vidaza - and a SCT may be in store for me at some point. Hopefully you husband will stay stable for a very long time. Best wishes to you both.

[Lurk De-Lurk]

Originally Posted by PaulS

Hi - I haven't found it helpful to ponder how I might have come down with MDS. Ultimately everyone gets something.

The course of the disease seems different for everyone - if your husband is low risk and progressing slowly then watching and waiting is the best course - that can go on for years. As your husband is relatively young, a SCT may be appropriate down the road - but only if counts or marrow changes - otherwise I believe the risk of a transplant outweighs the benefits. I watched and waited for over two years - my Dr. told me of patients she has who were relatively stable for many years longer - unfortunately that wasn't me and my counts started dropping and I have just started Vidaza - and a SCT may be in store for me at some point. Hopefully you husband will stay stable for a very long time. Best wishes to you both.

Thanks Paul. I did more reading up last night. They didn't mention a stage or category, but they told him he had no chromosomal abnormalities so I am assuming (based on what I read last night) that means he is low risk? He does not have the actual lab report - I told him to get it so we can see all the details. Also he clarified that the doctor said to give it just another 6 months. During that time they'll continue running labs to see how it goes.

[PaulS]

Hi Lurk - there are a number of factors that go into determining the risk level including chromosomal anomalies, blasts in the marrow, peripheral blood counts etc. The MDS diagnosis would have been based on the bone marrow biopsy findings - it sounds like the hematologist is planning a follow up visit in six months - at that time he may do blood work and if things are stable send you on your way to watch and wait - or he may also do another BMB. It doesn't sound like s/he has a particular sense of urgency, which suggests a good prognosis as you previously stated - but you may want to have him explain things in better detail at your next visit. There a couple of good websites you may want to visit - the MDS Foundation - http://www.mds-foundation.org - this has a lot of information - it also identifies hospital facilities (Centers of Excellence) that have some expertise in MDS - another is the MDS Beacon http://www.mdsbeacon.com
- which also was a good source of information - but they have unfortunately stopped publishing. That said - don't overwhelm yourself or over react to information you find on the internet - you sound positive and that is a good place to be. I think in some ways its harder to be the caregiver than the patient - best wishes to you both.

[ill]

Lurk,

his first and last hgb, rbc, mcv, plt, wbc counts?

It can giving an idea

[Lurk De-Lurk]

Originally Posted by ill

Lurk,

his first and last hgb, rbc, mcv, plt, wbc counts?

It can giving an idea

This is his last (prior to BMB)- only RBC, HGB & HCT are out of range:


WBC - 5.23 (4.0 - 10.80)
RBC - 4.05 (4.60 - 5.40)
HGB - 12.8 (14.0 - 18.0)
HCT - 37.4 (40 - 54%)
MCV - 92.3 (80-94)
MCH - 31.6 (26-33)
MCHC 34.2 (32-36)
Platelet - 227 (150-350)

His WBC's have been low (below normal) in the past (within the last 18 months) but right now aren't. His platelets have also been low in the past (but not within the last 18 months). It's the RBC's/anemia that have been consistently low for around 8 or so years. His GP sent him to the hematologist oncologist when the WBCs started also going low, but as you can see right now they are okay. The low platelet is even more intermittent... he gets severe bruising when that happens, but that hasn't happened in awhile.

Still don't have his BMB report, but I don't think that's the doctor's fault. Hubby is health care proxy for his mom and she's been having some issues this week that are taking precedence. His mom's issues are not related but she also does have a history of bizarre & severe, intermittent, unexplained bruising. We've always chocked hubby's bruising up to that.