Myelodysplastic Syndromes

[Eilan]

One of my family members was recently diagnosed with an illness of this type. I'm NOT seeking medical advice or information--the family member in question is under the care of a hematologist and I've been spending a lot of time Googling, so I've learned a lot already. I'm just curious as to whether or not anyone on Lit has had a friend or family member with this illness or something similar to it.

For those of you who have no idea what I'm talking about:

Myelodysplastic syndromes are conditions where the bone marrow does not function properly and there is a critical shortage of normally functioning blood cells. Bone marrow is the spongy tissue inside the large bones in the body. Myelodysplastic syndromes causes blood cells to mature improperly leading to fewer red blood cells, white blood cells and platelets.

Myelodysplastic Syndrome can occur at any age but it is more likely to develop in people older than 60 years. It is a serious condition. It can lead to acute myelogenous leukemia.

Thanks for any help you might be able to offer.

 

[EJFan]

sorry to say i have nothing to contribute here eilan... other than i will keep you and your family in my thoughts.

 

[lizaveta]

Eilan, I am so sorry to hear this. I don't know anyone with this type of syndrome, although I'm going through testing for the myeloproliferative disorders, including Chronic Myelogenous Leukemia. They are not the same thing, but they are related in being disorders of the bone marrow; actually they are pretty much the opposite of MDS. My prognosis would be likely be very different.

I'm sorry your family is going through this, and my thoughts are with you.

 

[Eilan]

sorry to say i have nothing to contribute here eilan... other than i will keep you and your family in my thoughts.

My prognosis would be likely be very different.
I'm sorry your family is going through this, and my thoughts are with you.

I hope everything works out for you, too.

From what I can tell, the prognosis depends on the specific disorder, and I'm not sure which type my relative has. The life expectancy can vary from just a few months to three to six years.

So far, she's had two blood transfusions. The transfusions work in the short term. However, her blood now has an antigen (?) in it that prevents her from being able to receive just any blood of her type (A positive). As of yesterday, we were waiting from the right blood to be shipped from out of state.

Procrit (the drug used to treat anemic chemo patients) didn't work. My relative had four shots (at $1850 per shot). Our next plan of attack will be a pill. I don't recall the name of the pill, but it will cost $5000 a month and must be ordered via mail through the doctor's office.

Bone marrow transplants are an option for some patients, but only if they're relatively young, like in their 60's; the success rate is high, but so is the mortality rate, apparently. If it would help and I knew we were compatible, I'd give her my bone marrow in a heartbeat.

Right now I'm interested in the connection between this illness and benzene exposure.

 

[lizaveta]

This is going to sound really stupid, but has she had a second opinion? I'm taking a break before launching into the next phase of testing (the bone marrow biopsy, oh joy); I can afford to do that because my symptoms are manageable and my levels still relatively low. But my hematologist already has another doctor lined up for me to see, whatever the results are.

Even if the diagnosis is the same, maybe another doctor might have some other ideas?

In any case, I'll be thinking of you and your family. This is a terrible thing to have to go through; even getting to a diagnosis is stressful and difficult, nevermind the results. My advice would be not to panic until you have a firm diagnosis and a second opinion in hand.

The body can do some wondrous things all on its own.

 

[Eilan]

This is going to sound really stupid, but has she had a second opinion? I'm taking a break before launching into the next phase of testing (the bone marrow biopsy, oh joy); I can afford to do that because my symptoms are manageable and my levels still relatively low. But my hematologist already has another doctor lined up for me to see, whatever the results are.

Even if the diagnosis is the same, maybe another doctor might have some other ideas?

In any case, I'll be thinking of you and your family. This is a terrible thing to have to go through; even getting to a diagnosis is stressful and difficult, nevermind the results. My advice would be not to panic until you have a firm diagnosis and a second opinion in hand.

The body can do some wondrous things all on its own.

No, she hasn't had a second opinion yet, and I agree (and have suggested) that she should get one. Some of my family members tend to be intimidated by doctors/hospitals and they tend to accept what the doctor says without question. We live in a rural area, and they're also afraid of the big-city driving that, in their experience, second opinions often necessitate.

Someone sent me a link to some MDS clinical trials, and I'm wondering if these treatments might be worth checking into. A lot of them are at the Cleveland Clinic and Case Western Reserve University; the big city driving wouldn't be an issue because I'm very familiar with that area and crazy drivers don't bother me.

It's my grandmother that's ill, BTW. My mother's an only child, and I know that between her job and assuming the lion's share of my grandma's care, including going back and forth to the doctor, she's pretty well put upon.

I live almost an hour away, and I've offered to help in any way that I can, but they turn me down. It's always, "But you're so busy with the kids. . ." I've resorted to online detective work because they've tried to "shelter" me from their medical problems in the past.

It pisses me off. I WANT to be useful, dammit, and I feel so helpless.

 

[lizaveta]

It pisses me off. I WANT to be useful, dammit, and I feel so helpless.

Just start showing up. My mother had to do this with her parents; they wouldn't tell her anything, so she just started showing up. Eventually they started asking her advice, and that's how she was able to find out when their appointments were - so she'd show up then, too. I don't know if they never noticed or what, but eventually she was entirely in the know, and now she goes to ALL of their appointments, or she sends her sister or SIL instead, to make sure everything that's supposed to be asked/done/discussed, actually is.

It's tough to be out of the loop on something so important; maybe just expressing that it's causing you more anguish NOT knowing than if they'd just tell you in the first place?

 

[Eilan]

I'm hijacking my own thread here, but how do you determine when a family member is unable to live alone?

 

[Straight-8]

Sorry to hear about your Granny. I hope things turn out well for her. How is she taking it?

I wanted to respond to your question about determining when a family member should no longer live on their own. I recently went through this. I think that we live in such a state of guilt about elderly people being 'institutionalized' that we often wait too long. A good seniors' residence can be a very pleasant and secure social place. I think far too many elderly people are left lonely and at risk in their homes, without the ability to even drive to a friends or the store, because their family can't bring themselves to make the decision to move them into a suitable facility.

It isn't an easy decision but one you have to make as well as you can; just don't let imagined 'guilt' affect your decision. Even if they are competant the elderly person is usually waiting for someone else to call the shots. Hope that helps.

 

[Eilan]

Sorry to hear about your Granny. I hope things turn out well for her. How is she taking it?

I wanted to respond to your question about determining when a family member should no longer live on their own. I recently went through this. I think that we live in such a state of guilt about elderly people being 'institutionalized' that we often wait too long. A good seniors' residence can be a very pleasant and secure social place. I think far too many elderly people are left lonely and at risk in their homes, without the ability to even drive to a friends or the store, because their family can't bring themselves to make the decision to move them into a suitable facility.

It isn't an easy decision but one you have to make as well as you can; just don't let imagined 'guilt' affect your decision. Even if they are competant the elderly person is usually waiting for someone else to call the shots. Hope that helps.

Thanks.

It's definitely not an easy decision to make. Hell, my grandma still beats herself up because she and her sister put their own mother in a nursing home, and she knows that she couldn't have cared for her at home.

It's not that she can't take care of herself--just that she's a bit tottery because of her illness. She's also tough, proud, and stubborn. My mom, brother, and his fiancée stop in at least once a day to make sure that she's ok. My mom's 8 miles away; my brother and his fiancée live right next door. She has everything she needs. She'll put up a front for us even though she's really not feeling well.

 

[EJFan]

I'm hijacking my own thread here, but how do you determine when a family member is unable to live alone?

my personal opinion is that if a person's general well being (or the well being of those around them) is threatened by living alone then it's not a good idea. this could manifest in phsyical, emotional or mental ways but i think this is the limit in my mind.

there are a lot of public and private agencies in (i think) every state that will provide at least day-sitting services for elderly or infirmed people. some of the public programs are available at little to no cost to the patient... it just takes some research and sifting through some beaurocracy to learn about and apply to. best place to start is the state's social services office i suspect.

 

[bisexplicit]

I have no experience in regards to this, but I'll be hoping for the best for you and your family.

 

[Eilan]

I have no experience in regards to this, but I'll be hoping for the best for you and your family.

Thank you.

 

[SweetErika]

No, she hasn't had a second opinion yet, and I agree (and have suggested) that she should get one. Some of my family members tend to be intimidated by doctors/hospitals and they tend to accept what the doctor says without question. We live in a rural area, and they're also afraid of the big-city driving that, in their experience, second opinions often necessitate.

Someone sent me a link to some MDS clinical trials, and I'm wondering if these treatments might be worth checking into. A lot of them are at the Cleveland Clinic and Case Western Reserve University; the big city driving wouldn't be an issue because I'm very familiar with that area and crazy drivers don't bother me.

It's my grandmother that's ill, BTW. My mother's an only child, and I know that between her job and assuming the lion's share of my grandma's care, including going back and forth to the doctor, she's pretty well put upon.

I live almost an hour away, and I've offered to help in any way that I can, but they turn me down. It's always, "But you're so busy with the kids. . ." I've resorted to online detective work because they've tried to "shelter" me from their medical problems in the past.

It pisses me off. I WANT to be useful, dammit, and I feel so helpless.

for your I'm keeping you and your family in my thoughts.

I recall replying a few days ago, but apparently it didn't go through.

When they turn you down for help, could you say something like, "Retired Hubby's taking care of the kids and house, so I'm coming over"?

I've had some good luck getting referrals from the top specialists in their fields, no matter where they're located. Often they know exactly who to point you to in your general area, and can give you some other resources to check out. So finding and contacting the best might be an avenue to explore.

Another thought is to contact the best research and treatment centers for info and referrals. For example, Seattle Cancer Care Alliance comes to mind because it's local and highly publicized, but there are many others you could try as well. Sometimes they're able to consult with local physicians and arrange for patients all over to get the latest treatments, so it's worth looking into. Did you see this article from the 13th?

On a personal note, hubby and I have a feeling if my MIL and family had pursued the best doctors and treatments, she'd have had a shot. She could have gotten into some very promising trials and drugs earlier if they'd pushed for it, but because they stuck with the local yokels, she had to wait for the best to become available, and that was time she just didn't have. It's not a guarantee by any means, but I think it shows it's important to seek the best and just deal with any extra hassle if you want the possibility of having a better chance.

 

[Eilan]

When they turn you down for help, could you say something like, "Retired Hubby's taking care of the kids and house, so I'm coming over"?

I have no problems with doing that, since retired hubby can handle the kids and the house quite well.

We'll see what happens. I talked to both my mom and my grandma today, and I've made it clear that I want to be involved.

Did you see this article from the 13th?

No, I didn't see that. Thanks.

I don't remember the name of the pill that she's now taking. It has an 80% success rate, but it also kills off white blood cells in the process. So that means that my grandma's not supposed to go out in public (she rarely does, anyway) and we can't visit her if we even think we might be ill (we didn't do this before she was sick). She has to take her temperature every day, and if she starts running a fever, we have to get her to the doctor ASAP.