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Neil
MemberHi Frank,
Do you think the doc meant dysplastic? Dysplastic means “lousy” ( in the vernacular)Myelo in Greek is blood. The combination is lousy blood
18% of the patients on Vidaza respond to the drug.
Think your doc is suggesting your class of MDS is probably not one that has a good chance of responding.
Would ask the doc why he feels you probably would not respond, inspite of JHU suggesting it?MemberHi Collene,
I/F blood has leukocytes removed.
Irradiation reduces the possibility of graft vs host disease & leukocyte filtering decreases the risk of sensitation to proteins present in the transfused blood and reduces the risk of CMV. Patients who have not been exposed to CMV & are candidates for a BMT/SCT should receive blood that is checked &free of CMV.
I/F blood helps those who are TX dependent from building up antibodies against platelets, transplantation proteins and other antigens.MemberHi Wendy,
Do the 2 docs know what the other is prescribing?MemberHi Wendy,
Danazol and Coumadin are an interesting combination.
Danazol was originally used to reduce menstrual bleeding in women and at one time to treat endometriosis ( did not work very well). It was somewhat effective in reducing bleeding in some MDS patients, improves clotting ability. Increased platelets in some.
Coumadin is an anti coagulant. counters clotting
Interesting combination.
Try going to a search engine and type in Danazol and then Coumadin. Take a look at the comments.MemberHi Wendy,
did a hematologist prescribe the Coumadin?
Is there any bleeding/bruising?MemberHi Wendy,
There was a patient in Florida that was on Danazol in an effort to boost platelets. It helped for about a year, maybe a little less.MemberHi Barbra,
Have read your message over and over. Don’t know what to say. There are times when the words just don’t come.
Do know that Ron and you are in our thoughts and prayers.MemberHi Andrew,
Am not certain how long a patient can stay on it with good counts. Have talked to one man who was TX independent for a year. Think it will vary from patient to patient.
They usually get off because of side effects. That being the case, would expect the docs to change over to Revimid or Revlimid.MemberHi Josie,
You should address these questions to a hemo or pathologist. Not sure I can answer them clearly.
Terephine biopsy refers to the bone that is removed in a BMB for analysis. Clot section refers to the aspiration sample of marrow.
Cellularity refers to the density of cells in the marrow.
Myeloid cells are blood forming cells in the bone marrow. MDS patients frequently have many more than normal. We produce huge numbers of cells, but many/most are abnormal and are identified, killed and removed.
Megakaryocytes produce platelets. If platelet counts are low, you would expect to see more megakaryocytes in the bodys effort to produce more platelets. Many of them are abnormal and disposed of, thus the lower count. The rest deals with the morphology (structure)of the megs.
Retuclin stain. They stain the sample to see the structure clearly.
Her risk level is assessed by the hemo and or pathologist, based on a number of factors. It would be best to have that clarified by a doc. It can be a bit confusing. For example: If a doc were to review my CBC & BMB without seeing me and reviewing my history—simply looking at the results I would fall into a medium to high risk category as a result of my platelet count and low RBC, WBC. But there are no symptoms of low platelets and my RBC/WBC levels are good enough for me with the help of Procrit. In reality I am a very low risk patient.
Blast level is a very important component of risk level. It takes a bit of time to assess risk and it can change over time.MemberHi Andrew,
This is generally the way Thalidomide works on those that respond.
There have been docs that keep increasing the dosage as the patient responds. Would have a discussion with the docs if they want to do this! Seems that as the dosage increases the side effects get considerably worse, frequently to the point where they must discontinue Thalidomide.
If her treatment is successful now, is it really nesessary to keep increasing the dosage.
They typically start at 50mg and slowly increase to as high as 400mg. When they pass 300 mg the side effects begin to worsen.
The question is: if it works at a lower dosage, why increase to a point where they must stop?MemberHi ANdrew,
Not sure they were all the same.
Probably 2 units of packed red cells per TX.
He may have been getting more when he bean and tapered off as his counts became more stableMemberHi Andrew,
It generally takes around 25 transfusions before iron overload begins to become an issue.
BUT, For those who have iron overload, chealation with Desferal will help control the problem.
There is also an oral pill in clinical trials in Europe. It might be an option, but would use caution till more is known about it.
Have a friend who has had over 400 TX over the last 14-15 years. He chelates 5 nights a week to control his ferritin level.
Another consideration—it take about 14 years for iron overload to effect organs.
If chelation is an option, do not wait till ferritin levels are high before starting. Get it under control early to shorten the process.
Her doc should be able to provide some good advice on how to approach it.MemberHi Wendy,
You might ask questions on the docs track record. How have his patients been doing.
A bit sensitive, but pertinentMemberHi Josie,
The portion of her BMB results look ok, except there was no cytogenitics report. It would indicate if there were any abnormal chromosomes.
No increase in blasts is a positive indicator. The docs will probably make an effort to make sure they do not increase.
The nurse seems to lack some understanding of MDS or is simply inexperienced.
Stanford is a great facility if treatment is needed. That is a big IF. Many MDS patients do not get any treatment other than drugs like Procrit and transfusions. An experienced hemo can handle a patient with a low risk. Going to Stanford will provide a second opinion, confirm the dx, explore treatment options and chart a course of action. There is a world af difference between patients considered to be low risk with RA, RARS & RCMD classifications and those medium to high risk patients in all classifications.MemberHi Julie,
Keep in mind that Vidaza may cause a decline in counts before they begin to increase in most patients. -
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