Basics

[Judy D.]

Hello,
I’m a 65 year old female, in good health, with no previous illnesses or conditions. I was diagnosed with MDS in April, 2012 and have completed 5 rounds of Vidaza. I feel very good – only symptom is that I get tired. It is hard to believe I have a serious illness because I look and feel good. I know that we all come to this diagnosis by differnt paths – mostly unknown and that we are all probably treated differently. Can we have a discussion on the basics. How can I learn to read lab reports? Are "blasts" and "platlet count" the same thing? How many "blasts" are the norm? Can a person live with a low white blood cell count? Is there an age limit on bone marrow donations and/or transplants? Stem cell transplants?

Thanks,
Judy

[bobweinberg]

Judy, I am loathe to hold myself out as knowing anything medical. But I know that blasts are immature blood cells that have not differentiated into reds, whites or platelets. The more of the marrow taken-up by these immature cells the greater the risk from the disease. Blast count is taken from a bone marrow extraction,while red,white and platelet counts are taken from a blood test. There is a web site on reading a complete blood count (CBC). Look at http://labtestsonline.org/understanding/analytes/cbc/tab/test The percentage of blasts in the marrow is how blasts are counted. I have had low white cell counts for almost 15 years. They range from 1.6 to 2.7. The key number to look for in determining risk of infection is the absolute neutrophil count (ANC). Call the MDS Foundation Patient Liason number that is on the home page of this website for written materials on the disease and more information.

[Judy D.]

Thank you, Bob. I will get the results of latest bone marrow biopsy on 10/15. Thanks for the link and info. It will help guide me on researching – I’m the type who likes to know everything.

[ane]

Hi

My husband has just been diagnosed with MDS. hematologist oncologist said intermediate to high risk and as you can imagine we are devastated by the news and I personally am trying to research everything I possibly can.

My husband had a routine blood test and the next day at 8:30 am doctor called and since we were supposed to leave for Europe four days later, made an appt for my husband to see a specialist. Two days later, and after a bone marrow biopsy, he was diagnosed.

What really upset us was when I asked for a prognosis and doctor said about a year, I burst into tears and we were both in a state of utter shock. No symptoms except tired ness which we attributed to his long going trips back and forth to Mexico visiting his elderly mother who has since passed away.

Needless to say, we cancelled our trip and are concentrating on his health due to high risk of infection because his white count is so low, 2.8.

He started treatment with Vidaza, 7 days and starts a second round October 15. The doctor has made an appointment for my husband to be evaluated by one of the transplant doctor,s at F. Lee Moffitt Cancer Center. We live nearby.

Last week we had an appointment with our family physician and she asked how I was. She suggested counseling. I didn’t realize I even needed it since I was trying to stay strong for him.

Anne in Florida

My husband is 69, almost 70 and generally in good health except he is a one pack a day smoker, yikes!!

[Judy D.]

Anne,

That’s very similiar to the way I was diagnosed – so sudden and unexpected. I haven’t asked about a prognosis – it really seems to vary with all of us. I do everything the specialist says, stay out of crowds, wash my hands about a zillion times a day, but, most of all, I keep a positive attitude. Keep reading everything you can find and ask a lot of questions. Stay strong and stay positive.

Please keep posting here – I am very interested in hearing of your, and your husband’s, journey.

Judy

[ane]

Thanks Judy for your kind response.

My husband is also taking his temp twice a day and if it reaches 100, doctor said to call.

We are trying to stay positive but sometimes when I’m by myself I
burst into tears. Not always but must admit having a rough go of it.

Anne

[Mary4Mike]

Anne,
Sorry to read of your situation. This is a wonderful place to share and ask questions. You mentioned that the transplant team at Moffett is going to assess your husbands info. As you can read by my signature, my husband had a transplant almost 3 years ago at the age of 64. He came through it well and is a perfect testimony that one can be "older" and have a successful experience. I do have to tell you that if he is accepted for transplant, they will most likely make him quit smoking. At least that was the protocol at U of M.
I also found that when he was "low" I was able to lift him up and vice versa.
Keep asking questions and let us know how things progress.

Mary

[ane]

Mary

Thank you for the encouragement and support

We do know smoking could be an issue and its something my husband has to come to terms with after years of different anti-smoking treatments and involvement in a clinical study.

For now, we are taking it day by day and know this is a journey.

This afternoon, my husband had enough energy to go to his end of year golf party and I received some encouraging news from British Airways customer relations.

The person who called was very understanding and is going to try and get us a refund on our "no refundable ticket".

So this pm was pretty good!

By the way, how is your husband feeling since his transplant?

Anne

[Mary4Mike]

Anne,

My husband is doing very well. He had an easy time of it with his transplant experience. He was released 12 days after transplant and has done well this past 3 years. He had MDS for 10 years or so prior to transplant and received over 140 units of packed red blood cells (PRBC or transfusions TX ). Because of this, he has a lot of iron and has been doing monthly phlebotomies for the past 2 1/2 years. This has been the main issue that we are dealing with now. Thank God, it doesn’t interfere with how he feels.

I have no idea where your faith lies, and I am not trying to push anything on you, but my sister smoked for over 30 years – extremely heavy smoker at that. She tried the gum, patches, and hypnosis. Nothing worked. She finally handed it over to the Lord as it was too much for her to do alone. She stopped cold turkey after that and has not smoked since.

I am happy to hear that you and your husband had a good afternoon. It is wonderful that we only have to face this one day at a time.

Take care and keep asking questions.

[Need To Know]

Amazing, such an encouraging testimony…thank you

[Calliopebrook]

Originally Posted By: Judy D.

Hello,
I’m a 65 year old female, in good health, with no previous illnesses or conditions. I was diagnosed with MDS in April, 2012 and have completed 5 rounds of Vidaza. I feel very good – only symptom is that I get tired. It is hard to believe I have a serious illness because I look and feel good. I know that we all come to this diagnosis by differnt paths – mostly unknown and that we are all probably treated differently. Can we have a discussion on the basics. How can I learn to read lab reports? Are "blasts" and "platlet count" the same thing? How many "blasts" are the norm? Can a person live with a low white blood cell count? Is there an age limit on bone marrow donations and/or transplants? Stem cell transplants?

Thanks,
Judy

so basic

[Mary Ann Smith]

Hi Mary and Anne,

My once healthy husband was diagnosed with oral cancer 6-6-12 and had a partial glossectomy and 61 lymph nodes removed 6-21-12. Was to start chemo 8-12, but his blood work was "atypical". After more blood work and a bone marrow biopsy he was diagnosed at U of Chicago with MDS 10-3-12, the day before his 62nd birthday. His score on the Revised MDS scoring format is a "2". HIs physican at U of C recommends ‘ Wait and see’ and indicated he is not healty enough for a bone marrow transplant due to his recent oral cancer. We are going to Moffett 12-5 to see Dr. List regarding treatment options, needs, etc. Am not sure why U of Chgo. recommneds no treatment, but trying to find out more by seeking a second opinion. Good luck to you strong ladies!!!

Mary

[Anonymous]

Body feels not good,Diablo 3 Gold
then go to the hospital for examination, the doctor asked X-rayed, X-ray, MD wrote diagnosis, and then I took the diagnosis and film to the doctor. Surprisingly, the doctors took X-ray diagnosis began shaking his head, his mouth Gee, I was immediately pumped wow cool, want to ask the doctor left how long results that doctors say is: "Oh, now young doctors, the handwriting is really bad. "Cheap PlanetSide 2 Gold

[374360]

Hi my name is Beth and I wanted to join because my father has MDS. After, doctoring for 2 years and 3 bone marrow tests they finally decided that he had MDS. He did not respond to procrit shots and is now doing chemo. We are on round 5 of chemo and nothing seems to be happening. He is still getting blood transfusions every 2 weeks. In the beginning only his red blood cells were affected but then they decided his white count was starting to be affected a little. That is what prompted the chemo. I just wanted to be able to converse with others with this disease or family members of those diagnosed. Sometimes, it is just so frustrating because in his case nothing seems to be working.

[Pamzzz]

Gosh, I am just starting to read these posts. My husband (age 64) was diagnosed with MDS 5 mo ago. Was started on Revlimid which caused multiple blood clots in leg & lungs landing him in hospital. We got thru that but now after 3 biopsies, tests show him getting worse but he looks & feels fine. We’d never know he had anything wrong if it wasn’t for the all the blood work saying so. His lack of immunity is really what’s so scary now. His blood count is at only .3 & they tell us at the Moffitt Ctr that anything below 1.8 is of concern. I just ordered a box of face masks today. Sadly he has some other twists to his condition. The chromosome 5q, 7p AND 53 deficiency. NOT good. We will be talking to the Transplant folks soon.

[Author]

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