Waiting for diagnosis...please help

[Paul 36]

I have been researching online while I await my appointment with a hematologist. Approximately, 1.5 months ago I developed severe ulcers in my mouth followed by red spots on my eyelids. Now having severe dizzyness and cramps, etc. I am 36 years old and otherwise in great health. Routine labs showed WBC at 2400, then 2100 10 days later. Platelets at 108,000 and then 101,000. My first appointment with a hematologist is on Wednesday 12/17 at Texas Oncology in Waco, TX. If anyone here knows Dr. Anderson, I would love to get your opinion on him. Really scared at the thought of not seeing my daughter (4) grow up. My MD said that the possible diagnosis is AA but my wife Kristi and I are not convinced that he knows what he is talking about. Since he only looked at my CBC, no smears or BMB completed, I think I fit more into the MDS diagnosis than AA. One last question: Does anyone know the current statistics on a BMT for someone my age? I know that I don't have a "for sure" diagnosis at this point, but with 2 weeks of intense research behind me, I am feeling pretty certain that this is what I have. Any response will be greatly appreciated. I have read the posts in this forum and God bless you all in your struggles.

Paul

[knstone]

Hi Paul,
You might want to consider going to MD Anderson in Houston. They are a center of excellence for MDS and see many MDS and AA patients each year.

One needs a doctor that has experience with these diseases or is willing to let
the experts help direct the treatments.

Keep a positive attitude, you are young and should respond well to treatments. There are several options that might fit your case.

[Paul 36]

Thanks Kirby, and all of you for the replies. I am still hoping against hope that i don't have this, but if I do I want to be knowledgeable... Funny thing is that all the web sites I read talk about how this disease is rare under the age of 50. Guess I am just lucky... I have also thought of MD anderson as a second opinion, however has anyone had any experience with balor Medical in Dallas. I know they have an MDS treatment center which would be fairly close to my family. However as you can imagine, I want the best care possible... Pam, I noticed you had a successful unrelated BMT, how old were you when you had the transplant...

Thanks again, and god bless..

[Marlene]

Hi Paul,

I would suggest not to pursue potential treatments in detail until you have a specific diagnosis. It's just too stressful to speculate as to what your disease is and to decide what your course of treatment will be.

You really need a bone marrow biopsy and aspiration to diagnose any bone marrow disease. And treatment will be based on that.

I will never forget the day John's doc called with the news of his dangerously low counts. They got him in to see a hematogogist right away and based on the blood work, they gave us four possibities starting with Leukemia, then MDS, the SAA then PNH. Like you, I jumped into researching all of them and quickly became overwhelmed. John's first BMB was incomplete but at least it pretty much ruled out Leukemia. The second ruled out MDS and PNH. It was so much easier to research one disease than all of them because once we knew, we could get into action and take steps in finding the right doc/center for treatment.

And always, get a second opinion.


The one thing these diseases teach you is "patients". You spend a lot time waiting for things.

Hang in there,
Marlene

[Dick S]

Originally Posted by Marlene

Hi Paul,


The one thing these diseases teach you is "patients". You spend a lot time waiting for things.


Marlene

Ain't that the truth. I've been "hanging in there", it will be 3 years this coming February, since I have the very slow and I mean very slow progressing kind of MDS-RCMD. My counts drop approx. one or two tens with each CBC every four months.

Paul, I would ask you to be patient and not jump to any conclusions as this disease is ever changing and ever shifting and you have no idea where it will end up. You are young with a whole life ahead of you and they are constantly finding new treatments and medications, so be patient and get all the facts from your CBCs and BMB and then a course of action can be persued. We will hang in there with you and help you as you take this journey. You are not alone!

[Paul 36]

I apllaud all of you for dealing with this every day.... You are true hero's, and much much stronger than I am. At any age this has to hit like a ton of bricks. All I can say is at 36, the brightest part of my day is looking into my little girls big blue eyes as I walk in the door with her running for a hug, and kissing my beautiful wife. In a moments notice, that time may be extremely limited, and that type of fear, and anger, really takes hold and just makes me want to ughghghgh. Sorry for the rant. I just love my family very much as we all do, and I feel like I might be taken away much to soon. The last thing I need right now is to be angry with god, and I know it is hill will be done, not Paul's will, but it is still hard to accept that sometimes.


God bless you all, and I will post more as I get the diagnosis.

[katherineann59]

Hi Paul,
My thoughts and prayers are with you! I was diagnosed 3 years ago, but the oncologists says I have had the disease for 8 years, so I went 5 years before the diagnosis. I had several docs wonder about my blood counts - I was always anemic, my white blood counts caused some concern and my platelets were often low, but the docs blamed this on my polycystic kidney disease. I'm happy in a way that I wasn't diagnosed early as I wonder how I would have handled the worry and waiting until the disease had progressed far along to require treatment. It's a strange feeling when your are suddenly faced with your own motality. I used to think more in terms of the future. Now, however, my focus has to be on the here and now. I suppose that's really how everyone should live their lives as we tend to miss so much if we are always looking ahead. Please try and take some comfort in the fact that many of us live "normal" lives with this disease. "Normal" for me means monthly chemo treatments, regular blood tests, and other drugs to maintain my blood counts, but I have lived to see my children become adults and even t o get to know my grandaughter - she turned 2 in September. She was actually born on Sept. 11, and the hospital staff always referred to her as a "miracle baby." Well, she is a major reason I am able to keep going and stay positive. It sounds as though you have a wonderful family from whom you will draw lots of support and positive energy. Try not to think too much about this dreaded disease. I know when I was first diagnosed, I spent a lot of time researching and feeling badly about having a "terminal disease." I am confident you, like all of us here, will find a strength you never dreamed you had. Know that you are not alone in any of the thoughts you have as you cope with this disease and know, too, that you have the support of many, many folks here. Wishing you all the best.
Kathy

[Paul 36]

You are so young, and whie I am not sure what type of kidney disease you have, is their a chance for a BMT??? With your age, I would think you would be an excellent candidate. Not possitive, but at that age would'nt you have atleast a 50% chance of long term survival. You are so right about facing your own mortallity. One day you are cruising through life, and the next day you are getting the call that your blood counts are low and you might have a terminal illness. My wifes birthday is also on Sept 11, and is an amazing women. However she is only 29, and my daughter is 4, and I just can't stand the thought of leaving them yet.

God bless you all, and I hope you all continued health...

[towncarlady]

When first diagnosed with MDS, I was like probably most of you...just devastated. I am coming up on one year since diagnosis and a roller coaster ride with the effects of the illness. I can say that I handle this emotionally far better than I did, but that does not mean that I don't have days and moments that overwhelm me.

May each of you have a blessed holiday season. May we all do our best to stay strong in every way, always praying for new treatment options.

[Dick S]

Originally Posted by towncarlady

but that does not mean that I don't have days and moments that overwhelm me.

We all feel that way sometimes. The trick is to try not to show it. If I show it, then I pass it on to my wife and kids, then we all suffer from this dang disease.

[mannythedog]

Hello Paul,

Wow 4 years old. My son is 3.5 and I will say, a bruiser. My 22 year old takes a beating when he comes to visit. Yea, a small gap.

Let me say, first, don't sweat the small stuff. Dr.'s were guessing a year ago about my father, {now 77} until his bone marrow tests came back. They threw a few ideas around; however,the real proof was in the smears, almost 15 days after the marrow was taken. If you are diagnosed AA, than you are young enough to take on treatments that will keep you around for a long time. I have a customer that reads here, but does not post. Mid 40's, AML and did a transplant. That was 5 years ago, and he is looking great. Have another in his early 60's that went through the same last summer, was a rough go because of age, and he was a tad out of shape, but now, goes to the pool, and swims every day.

I have been helping take care of my father for some time now, but he was not eligible {candidate} for any repair, only management. I can say from the care giver view, that, (1) kids understand, my daughter almost 7, and (2}age is a BIG factor when beating this.

Paul, my prayers are with you and your family. I know being a father your first duty is family; however, I have learned from my fathers journey, help from others and sharing goes, a long way.

Keep the faith, and please keep us all posted. Oh, and Paul... Merry Christmas.

Scott
Always proud To Be SON OF BOB

[Paul 36]

I can't express enough how much all of you have touched my life in such a short time... I did the BMB yesterday, and my hemo was actually optimistic. I guess I will know more in a bout a week. Atleast I have a ray of hope now.

In any regards, whatever the diagnosis, I will continue to post here and lend as much support as I possibly can.

God Bless you all and Merry
Christmas...

[Dick S]

Originally Posted by Paul 36

I can't express enough how much all of you have touched my life in such a short time... I did the BMB yesterday, and my hemo was actually optimistic. I guess I will know more in a bout a week. Atleast I have a ray of hope now.

In any regards, whatever the diagnosis, I will continue to post here and lend as much support as I possibly can.

God Bless you all and Merry
Christmas...

Paul, please please let us know how the dx turns out. We all learn from each other and any info is of great value to all of us. We all need to stick together through this blankety blank disease, it's the only lifeline we have.

[RickGuam]

Hi Paul,

I too have not been diagnosed. I've had all the blood tests that I could have basically. I've been seeing a hematologist/oncologist for 11 months.... I've had a bone marrow biopsy. I've seen 2 other hematologist/oncologists coming from Los Angeles and they are all puzzled. Although they are not specialists with MDS, they are curious to see what the specialists at Stanford say when I visit them in the summer of 2009. My wbc and red blood cell counts have been consistently low for about 5 years but it was not taken seriously until about 11 months ago. The local hematologist recommends that I go off island( i live on Guam .... far far far away from the mainland USA ). He has recommended that I go to Stanford and go for more tests, etc... My blood counts have been consistently low for months now. I may leave island after January sometime to seek more answers.

I do hope I can learn more as I read more about people and their experiences on this forum.

I will share as much as I can as things change.

Although I've not been diagnosed, I was told to inform my siblings that there could be a possibility that they could be candidates for a BMT. So I will be informing them soon.

I wonder everyday what may be the cause of having MDS at my age - 44. I've not been exposed to benzene. Doctors are puzzled.

I've also been told that I may not be a candidate for a BMT so soon because my bone marrow ratios are not so severe. I don't quite understand that, but I am learning bits and pieces as time goes by.

I've still got a lot to learn.

Thanks for all your advice..... May God Bless You All!

Happy New Year!

Rick

[Paul 36]

WEll the preliminary report from the BMB shows that I have no MDS/Leukemia/melanoma cells. Still waiting on the cytogenetics study.. ( sorry about the spelling). The Hemo did say however that my bone marrow is mildly hypocellular for someone my age.. I have also seen a Rhuematologist since then, and will do some more blood work tomorrow. I have told my Dr's that it appears my white count has been low normal around 4700-5000 for the last 4 years which leaves me to beleive that I have had a minor problem since then. When i asked my hemo about the hypocellularity, and Aplastic anemia, he told me that my blood work, nor my bone marrow were nowhere near that point. I go back to the hemo on the 16 of Jan, and I hope to have the other blood work from the Rhuematologist back next week. He is just looking at a few viral things, due to having some ulcers in my mouth, and a red spot over my left eyelid. He is also looking at the amount of calcium and uric acid in my blood due to the fact that I have passed several small kidney stones over the last several years. I told him that I feel strongly that the red spot on my eyelid, and the ulcers under my tongue are directly related to the low blood counts. Anyway, I will keep you all posted as I find out more.

God bless you all...