Hypoplastic MDS

[Bobbye A]

My name is Bobbye and my sister has just been diagnosed with Hypoplastic MDS. Basically NO white blood cells or neutrophils. I would like to speak with anyone out there who [even tho rare] has the same problem. She keeps saying I don't understand [and she's right to a certain extent] so I am trying to find someone with the exact same problem who DOES understand.

Please forgive me for any errors, I only today found out about this forum and am not yet familiar with how this all works. Is it proper for me to give my e-mail on here, or how does that work.

I very much appreciate any help or suggestions, this has been and is, a very emotionally and physically draining experience on all family members.

[Neil Cuadra]

Hi Bobbye. I'm sorry to hear about your sister's condition. The other forum members and I can understand how hard this diagnosis (and all that follows it) is on your family. Good for you in making the effort to find your sister someone else with the same condition. It helps to know there are others facing the same thing and especially to talk to them.

We're not the only place you can look for other people with MDS or Hypoplastic MDS in particular. Some of the groups and organizations in our Resources page may know of other Hypoplastic MDS patients. I'd particularly recommend contacting the Global Support Network of AA&MDSIF, if you haven't already. The purpose of the Network is to put patients in touch with others like them.

Does your sister already have a doctor she likes? Has the treatment plan been determined?

About your email address:

The choice is yours. If you prefer not to have your email address visible on a public website like this, other forum members can still contact you privately by clicking either of these links:

Send email to Bobbye A (outside the forum system)

Send a Private Message to Bobbye A (within the forum system)

If you post your email address, then anyone on the Internet can email you. Some people avoid doing that because unscrupulous advertisers scan the Internet looking for email addresses and sending junk mail to them. That may be the least of your worries, but that's why we offer the other contact options.

A tip for you and everyone else:

To make sure you don't miss any Private Messages from other forum members, I suggest that you go to your User Options and make sure you have checked the box labeled "Receive Email Notification of New Private Messages."

That way, you'll be notified if somebody sends you a Private Message. Any member can read his or her Private Messages by clicking List Messages in the My Settings section.

[Lisa V]

Bobbye, my husband also has hypoplastic MDS. He was originally diagnosed with Aplastic Anemia, but the diagnosis changed after a year or so when they found a chromosomal mutation. Otherwise it remains the same and the treatment has been the same (ATG/cyclosporine).

It's been 3 years now and he's currently stable and has a normal life. His neutrophils have never gotten down to really dangerous levels, although they remain lower than normal. I'm sure there are plenty of people here who do have some experience with neutropenia, though. If you have any specific questions, this is the place to ask them. It's hard to know how to help without some more information.

[Bobbye A]

Hi everyone it's me again, Bobbye,

Anyone with neutropenia, how are you handling the food thing. What can and cannot be consumed. What about frozen dinners, etc. because food is such a problem and my sister has no desire to cook or eat and not much strength and is in a deep depression.

[Lisa V]

Bobbye, my understanding of the food issue is that most frozen, canned and cooked foods are not a problem. What you have to be wary of is any raw fruits or vegetables that cannot be peeled. The outer surfaces can harbor bacteria, especially soft or rough-surfaced things that cannot be scrubbed.

[Neil Cuadra]

Here are some sites with guidelines for low-bacteria diets:

Leukemia Links: The Neutropenic Diet

Fred Hutchinson Cancer Research Center: Diet Guidelines for Immunosuppressed Patients

Healthtouch: Low Bacteria Diet (the same information is at drugs.com)

Seattle Cancer Care Alliance: Diet Guidelines for General Oncology Patients with Low White Blood Counts]

Ohio State University Medical Center: Low Bacterial Diet (PDF file, size 40K; see Reading PDF files)

There isn't an absolute dividing line between "safe" and "unsafe" foods, so you have to use common sense and decide how strictly you want to avoid potential risks.

When my wife was neutropenic, we didn't eat out and didn't get take-out food. We got in the habit of washing our hands more often, rinsing cans before opening them, making sure food was cooked thoroughly, and following the other guidelines we were given.

Some raw vegetables, like cucumbers, were easy to wash so we had them anytime. Some took work to wash (lettuce, one leaf at a time) so we had them only when we felt like taking the trouble. And we skipped some, like bean sprouts, because there was no way to ensure they were safe enough.

Nothing in life is 100% safe, but it's certainly worthwhile to avoid the most risky food choices. Becoming familiar with what's recommended and what's not recommended is the first step.