Effects of MDS on lifestyle

[cdseibold]

I am newly diagnosed with MDS. I have no symptoms. Really annoys me that I have a serious disease. Not really accepting this diagnosis yet.

I need to start some planning for the future. Each person is individual so it is hard to know what to expect.

I have been working part time and have a large hobby farm. I am also raising an adopted grandchild. My husband is disabled due to back problems and two surgeries.

My first question is when do I have to give up the hobby farm. How low does my white count have to be to need to discontinue working a farm. Lots of poop and dirt on a farm. LOL

Thoughts appreciated.

[Birgitta-A]

Hi cdseibold,
You know there are patients with the type of MDS called RA (only anemia) who live as long as persons without MDS.

What type of MDS do you have?

When you have MDS it is always wise to avoid infections because your bone marrow perhaps can't make up for the WBC that are killed when they fight infections.

If that kind of WBC called neutrophils are less than 1.5 you should be careful. The neutrophils are about 50% of the WBC.

How old are you - is there no possibility for a Stem Cell Transplantation?
Kind regards
Birgitta-A
73 yo, dx MDS Interm-1 2006. Good response to Thalidomide + Prednisone.

[cdseibold]

I am 69 and in good health otherwise. I think that marrow transplant is considered out of the question for my age.

I am considered at intermediate level 1.

I need to look more closely at the neutrophil counts. I am a little overwhelmed with all the blood results. I did start a spread sheet for the simple things. Also borrowed a hematology textbook from a friend, but it puts me to sleep.

Does anyone understand what hypercellularity has to do with MDS? My hematologist seemed to think this was the smoking gun.

How does one avoid all infection? On wiki they say to only eat cooked fruit and veggies. Really. I would think uncooked might be better for overall health which is important. We are not a 3rd world country.

[Mary4Mike]

Carol,
My husband was diagnosed in 2000 at the age of 55. He also had no symptoms. He did the watch and wait routine for awhile and as his Hgb dropped he tried the available treatments that were offered then. His whites and/or neutrophils were never affected unless it was a side effect of chemo. Are yours unusually low? Sometimes only one blood line is affected ie reds, whites, or platelets, or all of them can be. Did your doctor warn you to be careful of eating raw foods? If not, I would use common sense about cleaning and preparing your food. The same for hand washing, etc. I wouldn't become paranoid about it unless your neutrophils are extremely low.
About transplant. As you can see from my signature, my husband had a stem cell transplant at the age of 64. I don't think there are age restrictions for transplant anymore. They tend to look at the overall health of the person. You could always ask your doctor if you would be a candidate. I didn't want you to not consider transplant because of age. Maybe it is something you are not interested in. Just know, it may be an option. It was a wonderful option for my husband with a successful outcome. We are a thankful every day for this second chance.
All the best to you,
Mary

[Neil Cuadra]

Originally Posted by cdseibold

Does anyone understand what hypercellularity has to do with MDS? My hematologist seemed to think this was the smoking gun.

Hypercellularity (literally "too many cells") is a common characteristic of MDS, but some MDS patients have normal cellularity or hypocellularity (too few cells).

Hypercellularity of bone marrow cells is a sign of a bone marrow problem, but it's not always MDS. Myeloproliferative diseases or AML can also be indicated. So you might call it a smoking gun, but one that doesn't completely identify the suspect.

How does one avoid all infection? On wiki they say to only eat cooked fruit and veggies. Really. I would think uncooked might be better for overall health which is important. We are not a 3rd world country.

There's a tradeoff between eating for general health and eating in a way that lowers the risk of infection. For example, boiling food reduces both bacteria (which you want to reduce) and water-soluble nutrients (which you would have preferred not to reduce). Fresh fruits and vegetables are great for general health but are more likely to be a source of infection than, say, processed vegetable soup from a can. Leafy vegetables are good for us but washing them one leaf at a time is a royal pain. I know - I did this for my wife when she was most neutropenic.

If you do Internet searches you'll find a number of recommendations for neutropenic diets, for example this one. As Mary4Mike said, common sense is also a good guide.

[cdseibold]

Thanks for the links regarding a neutropenia diet. Good suggestions.

Yesterday we had breakfast at our hotel. One of those set it out and you grab deals. The potatoes were half still frozen and then they added more hot potatoes to the pan. Hubby had told them there was a problem with the potatoes so they just added more. The person manning the buffet was quite rude. My hubby had a pointed but respectful discussion with the hotel management. Imagine, this hotel is in Rochester where there are lots of sick people visiting Mayo!

So I am now being more careful. Home cooked is best!! Hot food hot and cold food cold.

[Sally C]

Hi Carol,
When Don's neutrophils were low our oncologist told us to NEVER eat at a buffet. She said they were full of germs and you also don't know if the food has been at a temp to where would be conducive for food poisoning.
God Bless,
Sally