[jlcram]

I have to say that at first, I was scared to death. The thoughts of what might happen engulf any other thought.

To this day, I am still watching and waiting. The problems that I have do not compare to the problems many people have had to deal with. While my counts are low, I have seen lower from people who contribute to this forum. Will the day come when I have to make tougher decisions? I have no doubt. For now, I am happy to wash my hands more often which is the very least I can do to ward off infection of any kind which at this point, I am very likely to contract. Do I worry? YES I WORRY!

While trying to forget all of this, in the back of my mind I wonder when will I get sick? When will I need to be hospitalized? When will I need some form of treatment as described by many of the people on this forum? When will MY family have to deal with all of this? I read alot of posts and feel for everyone. I too appreciate all of the responses. While we trust our doctors, wisdom is infinate here. So many people, so many experiences, so much wisdom and advice from people who have been where I and many people have been. For your willingness to share, Thank You

It has been almost a year since I was told that I may have leukemia. To this day, I don’t know what is wrong. I just keep watching and waiting. Do I still work? Yes! Do I still go to public functions? Yes! Have I become more aware and worried of what can cause the infection that could make me sicker? YES!

Over the past few months, I have tried to forget this, I have tried to go back to normal life. I think I have done ok, BUT, that worry is ALWAYS IN MY MIND. What is going to happen? When will it happen? When will I need some form of treatment?

Again as I said, these are the least of my worries at this point compared to others, but I still worry.

I have 3 children. While 2 are well on to adult life, I still have 1 who just turned 14. I have a 1 grandchild who I want to see grow into adulthood. I have decided to do whatever I can to make this the longest path I can take.

At this point, I dont feel like a prisoner, I feel like I just need to combat whatever comes my way, for my wife, for my family and for me. So, I have decided to bow to a few of the things that could make me sick. I will do whatever I can to fight this.

xz

I worry

[jlcram]

Hello everyone

To answer your question Mary, no my doctor has not suggested treatment of any kind at this point. Although my wbc and neutrophils are low, "I have not contracted any infections" He feels that my counts are low but stable at this point.

Billboy, yes, I am seeing a hematologist/oncologist here in my hometown. My first bmb showed 1% blasts. I was referred on to the bone marrow transplant center in Hershey where another bmb was performed along with numerous other tests. That one showed 0% blasts. Both tests were said to be inconclusive. I have been typed for a future transplant if needed. Both doctors refuse to diognose MDS at this point. At my last visit he said that he feels my counts will not get better but again, at least they are stable right now and I have not been ill. So we continue to "watch and wait"

So right now, I continue with blood tests to watch for any sudden changes, keep an eye on my health and wash my hands ALOT.

Hunter Bob’s wife, thank for your advice. At this point I continue on and try not to worry about what might happen down the road. I hope your husband is feeling better.

Katydid, Welcome to the forum. First, as everyone says, learn all that you can and ask all the questions you can think of to understand what is happening to you. It has helped me a great deal.

Thank you all for your comments and support.

Jeff

[jlcram]

Hi everyone

It has been awhile since my first post. Thanks for your reponses. I’ll try to answer your questions and catch you up on whats been happening. I’ll start with giving you some recent blood counts which are at the lowest so far.

WBC 2.4
RBC 3.93
HGB 14
HCT 39.9
PLT 38
RDW 14
MCV 102
MCH 35.7
MPV 9.4

Auto Diff

NEUT 0.2
LYMPH 49.6
MONO 28.2
EOS 0.4
BASO 1.9

I have seen a specialist from Hershey Medical Center who again will not commit to a definate diognosis of MDS because there have been no chromosome changes. Both bone biopsy reports showed no blasts. His biggest concern again is my neutrophil counts which have been consistantly low. I have been typed for a bone marrow transplant should the need arise but at this time the doctors feel that the risk outways the benefits. At this point, I tend to agree. I have not been sick, although I don’t understand why since my neutrophil count is so low, so I take precautions as suggested and hope that is all works out. I currently see an specialist here and continue to have
blood tests every couple of weeks. So far, no treatment because nothing has happened meaning "I have not contracted any infection." I have pretty much gone back to the way things were before I was told that I ‘probably had some form of cancer" If the doctors dont worry than why should I, right? I figure that if the day comes when I need to consider a more aggressive treatment then I’ll deal with it then. Again, its just watch and wait.
If there are other questions, please ask. It can be difficult to cover everything as you all know very well.

Thanks again for your interest and support

Jeff

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