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Neil
MemberHi Julie,
Thanks for your kind words.
The consensus is MDS is not inherited. There are a few situations where more than one family member may get it, but the reason is they were all exposed to the same environmental conditions.
If a family owned a gas station and several family members worked there, chances are the benzene in gasoline could trigger a chromosome defect in one or more family members.
Would not , however, say it is impossible to happen, but am not aware of any solid info that would claim it may be genetic.
There is little one can do to prevent MDS. But would not tempt fate by using alcohol or smoking. Would also take a multi Vitamin, Vitamin C and B Complex. Get ample rest and a good exercise routine.You should discuss these suggestions with your doc. Living a healthy life style certainly can’t hurt. Would stay away from Vitamin E if there is any evidence of a platelet decline. E has been one of those substances that have impacted platelet growth or function in SOME people.
A yearly checkup including a CBC will keep you appraised of your RBC, HGB,WBC and platelet counts. If they are normal, you would not have reason to be concerned about MDS.
I found I had MDS as a result of a routine check-up.
My moms situation was brought on by old age. She was 93.
NeilMemberHi Wendy,
There are some basics that every MDS patient should follow till the docs get a handle on the particular situation and explain the options.All MDs patients are different. They respond differently to the disease and to treatments. What works for one may or may not work for others.
It is essential he has an experienced hematologist treating him. The hemo must have treated other MDS patients in order to be aware of the options available. The more patients he/she has treated with his classification the better. This is not a time for on the job training!
If transfusions (TX) are necessary Irradiated/Filtered blood must be used to prevent downstream complications. This is a must. Demand it!
He should also continue seeing his regular doc. MDS can create complications in various organs.
He should follow a healthy lifestyle outside of the MDS involvement. No alcohol, eat a healthy diet. (I avoid fats and follow a low carb diet). Get as much rest as needed. Exercise as much as can be tolerated. I also take a multi vitamin, Vitamin C and B complex.Be certain his docs agree on any of these options.There is a considerable difference in risk between
MDS patients. The only cures at this time are a Stem Cell Transplant or a Bone Marrow Transplant. These options involve some risk depending on age and the classification he has. This is an entire subject that takes time and tons of knowledge/understanding.The primary goal at the beginning of treatment is to stop the disease from getting any worse. Stop Red Cell and Hemoglobin from decreasing. Stop platelets from getting lower( is some cases higher). Keep White cells from getting too low (or too high). If there are blasts present, stop them from increasing in the marrow and stop them from getting to the peripheral blood. In other words keep blood counts stable and prevent them from becoming worse. There are drugs that may help. A drug like Procrit or Aranesp can help boost RED Cells. They work on some, not others. Steroids can help but usually have rotten side effects and are temporary. Thalidomide, Revimid, Revlimid, Vidaza, Decitibine all have their place in certain situations. They have their side effects to consider.
Are there any abnormal chromosomes? If so which ones? There are a couple that will indicate a good prognosis. There are some abnormalities that do not.
It take a bit of time to understand how a patient will progress. The more they understand the disease and potential optioms the easier it is to cope.
Again an experienced hemo and Irradiated/Filtered blood are an absolute must.MemberHi Alexa,
The bruises would be a result of a low platelet count or maybe due to a lack of platelet “function”. Some people bruise and some might tend to bleed when platelets get low,or do not function properly.
Transfusions would not impact on platelet count. Most transfusions are either packed red cells to raise RBC and hemoglobin or platelet transfusions to raise platelet levels. There are some very rare situations where White cells are transfused.
As a rule transfusion will not harm anyone. There can be allergic reactions with some, but these are easy to control with Tylenol and Benedryl.
Low RBC and HGB are usually the reason people become fatigued.MemberThe counts are great!
There are many who would love to have them.
The doc should be encouragedMemberHi Barbra,
Support comes in various forms. All of us on The Forum have our own niche or means of expressing ourselves. It is an excellent platform to provide each person with the type of support that they feel comfortable.
Over the years you have provided support in several forms. We thank you for that and I think I can speak (write) for many others when I say that we offer you whatever you need at this time.MemberHi Barbra,
So sorry to read about Ron.
Don’t have any thoughts on Hydroxyurea.
Have Ron and you in our thoughts and prayersMemberHi Suzanne,
What wonderful news. Will be pullig for you to make it last!
Have been watching your posts with awe.MemberHi Carrie,
Will attempt to clarify, but best to cover with a doc.
His WBC is very low, normal is 3.5 – 10.8 K/uL
A reading of 100% Lymphocytes would indicate there are:
no neutrophils
no monocytes
no esinophils
no basophils
His resistance to infection is critically low.
Would keep him as isolated as possible till you can confirm the count is accurate.
Would also ask about a WBC transfusion. They usually reserve them for those with very low WBC levels. This may be such an event. Wbc do not live very long, thus it is rare to hav a WBC TX
It is not something seen very often so would follow up soon and get some answers.MemberHi Kate,
Good to hear from you.
We are all pulling and praying for George.
Keep us posted on his progress.MemberHi Josie,
The BMB report will have all of the info in it, but the language can be difficult till you learn the terms. It will explain the Peripheral Blood. It will comment on the Erythrocytes ( red cells), Total Leukocytes (white cells) and Platelets.
It will then go on to the Bone Marrow Aspirate and comment on the state of the marrow. Then iron stains. About this point there will be a Diagnosis. You should see information on her classification and if she has hypo or hyperplastic marrow etc.
The cytogenetics report is usually on another page and will tell if there are any abnormal chromosomes.
The sequence may be a bit different from lab to lab but all the info should be there.
At this point would focus on the Diagnosis comments and the Surgical Pathology Report.
Be sure to ask the doc to explain the report and to clarify anything you do not understand.
Most of the time questions will come up after you leave the docs office. You can always call back or you can ask on The Forum. Its possible one of the members will have an answer.
Her exercise routine sounds great. As long as she has been doing all you describe, I would encourage her to continue, but with caution and with her docs approval. If she stops altogether, it would be difficult to start up again.MemberHi Josie,
Make sure her doc agrees with the exercise.
At 82 exercise may not be adviseable.MemberHi Dave,
Have them give you 2 Tylenol and Benadryl about 30-45 min before the Platelet TX. It usually prevents an allergic reaction.
You might ask if the platelets were matched correctly. A delicate question, but —-MemberHi Josie,
It can take a couple weeks to find out if the Procrit is helping. Her Red counts will increase if it is working.
If it does not help the doc will probably want to transfuse her. Transfusions are used to support many MDS patients.
Ask the doc if her iron level is ok. If it is low the Procrit may not do its job. Procrit needs iron to work properly.
NeilFebruary 2, 2005 at 9:10 pm in reply to: Very confused about bone marrow biopsy results – any thoughts?? #3824MemberHi Sarah,
Have you been seeing a hematologist?
Did a pathologist or hemopathologist interpret your BMB samples?
Not sure why they found an abnormal chromosome 5 then changed it to chromosome 8. Would suspect there might be a lack of experience. If that is the case would certainly get to a hemo with experience and with pathologists experienced in seeing marrow of MDS patients.
Would want to get the chromosome 8 situation clarified as soon as possible. Not in April.MemberStatistics from clinical trials indicate 18% of those on the trials responded to Vidaza.
The next question is for how long?
Seems some will go for around 12 months before counts decline. Others a bit longer.
Then what?
Another drug?
More Vidaza?
Its not really clear. There are some other drugs being tested and developed, but so far no great results long term. -
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