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Neil
MemberHi Brian,
Very sorry about your dad. Hope we can provide some info that will help you and him getup to speed and understand MDS better. Sometimes a good understanding of what is going on helps.
Some Basics.
An experienced hematologist is an absolute must! A hemo with experience with RAEB-2 is even better. Most docs have never seen a case of RAEB-2 You dont want one that advocates on the job training!
Having him treated at a Center of Excellence is also a big advantage. They can explain the options available much better. The University of Toronto Hospital For Sick Children is on. Dr Yigal Dror is one frequently recommended.
Irradiated/filtered blood was mentioned in other messages as well as iron over load. Remember it usually takes about 25 transfusions(TX) before iron builds up. It then takes about 10-14 years before it will effect any organs. Would follow the docs advice on how to approach this with respect to downstream problems. They will monitor his ferritin count to make sure of his status. Not everyone fits the 25/10-14 mold.
A primary objective would be to keep his blasts from increasing. Better yet to lower them. There are drugs that might work.
Would glean all of the info possible from those posts from others who have RAEB-2. They have a wealth of info from actual experience.
Will send some additional info to your e-mail address. Much too long for The Forum.
NeilMemberHi Jody,
Is there anything else done at the same time the CBC is taken?
Has there been much change in her counts over time?
Usually there is a reason for a weekly CBC. When i was initially dx my doc had me in every week till he was satisfied my counts were stable. Then went to every other week, to monthly to every 3 months.
Now I get one every other week just beore a Procrit shot. They want to know my counts, particularly HCT before administering the shot.
She might ask why they are checking her so often.
At one time I went to a lab about 5 minutes away and had them fax the results to my doc. This took much less time and gave him the data he wanted.
NeilMemberHi Pam,
Well said!
Your knowledge, counsel and compassion has been appreciated.
NeilMemberGet all of the info you can from the docs who want toperform the SCT.
How many have they done? How many successfully?
How many done on patients your age? Successfully?
How many done on pts with your class of MDS? Successfully?
Then check centers like M D Anderson, Fred Hutchinson and the NIH to compare stats.
There has been some great progress made with SCTs over the past year. You want the very best team possible doing the procedure.
You don’t want docs looking for patients to try their procedures on. This is not to say they are, just to make you aware and to be alert.
Your age is a huge asset and you do not want the disease to begin to get a foothold. Also consider the fewer number of tx you have going into a SCT the better.
Good luck and keep us posted. You will be in our thoughts and prayers.
NeilMemberHi Jim,
Her counts are not too bad—on the surface.
Her WBC is slightly high. Something to watch.
Does she have any blasts? In the marrow? In the peripheral blood?
Believe you said she had an abnormal chromosome—5q-.
The WBC may be the indication of an infection. Something to be watching.
HGB is on the low side, but not too bad. It can be decieving. The threshold for fatigue varies from person to person. Some can tolerate counts around 8.0 others have difficulty around 10. Again something to watch.
NeilMemberForgot about the question on BP.
Depends upon her dosage.
If it is at normal levels, BP should not be a factor. If the dosage is high it should be monitored. ie Procrit has not had any effect on my BP.
NeilMemberIf she has an insurance supplement it will pick up the difference.
It may take a little time to see a significant increase in hemoglobin and hematocrit.
One word of caution. Once HCT reaches 37.0 she may not want to get a shot. Wait a couple days for it to come down. Medicare will not pay for Procrit shots when HCT exceeds 37.0. Would think their policy on Aranesp is the same. Have her check it out with the doc. There are ways around it, but it boils down to a he said she said situation. Waiting a couple days could prevent any financial problems.
NeilMemberHi Pam
They are the same, but the differences are subtle.
Aranesp is Darbepoetin Alfa, described as an erythropoietic protein. it is a 165 amino acid, where Procrit is a synthetic erythropoietin, a 165 amino acid glycoprotein.
Aranesp was developed for anemia induced by kidney disease.
It may just work where Procit failed. it lasts longer than Procrit. Those with kidney disease generally get it once a month. Have heard where some with MDS get it 2 or more times a month.
How about your iron levels. If iron is low an iron supplement may help. Procrit needs iron to function.
NeilMemberThere is more info at: http://www.house.gov/matsui/
MemberHi Kate,
Procrit and Aranesp were developed to help build red cells in chemo patients. Since it builds red cells it is also used on MDS patients in an attempt to build cells in them.
Briefly— nonmyeloid malignancy would be a cancer not involving the bone marrowNeilMemberAranesp is similar to Procrit. Believe the effect is over a longer period of time. Dont need shots as frequently. Much depends upon the patient. Discussed it with my doc and we decided to try Procrit first. If it did not work would then try Aranesp. He indicated there is a large cost differential between the two.
Go to http://www.aranesp.com for more info. Even more if you type Aranesp into a Google search engine.
NeilMemberHi Barb,
I do not have specific info on nutrition. There have been others who have posted some positive comments. Hopefully they will jump on.
You might try http://www.mannatech.com
One word of caution. They use multi level marketing in the sale of their products. Used 4 of their products for a year with no results. Others, however claim very positive results.
NeilMemberHi Pam,
You mightwant to contact Dr Richard Childs at the NIH. He has had some good results with matched unrelated donors.
Think you can get his number at: http://www.nih.gov
Neil -
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