[paml]

Brian,
There is unfortunately disagreement amongst the professionals regarding what level above a normal ferritin, which is 10 – 291, (lab values may differ slightly), that are dangerous. Ferritin is the indicator of storage iron, and is not essential to maintain life. At one of the AA-MDS family and patient conferences one expert expressed that even a small amount of stored iron is a potential killer. Excess iron damages the heart, brain, spleen, and other storage sites in the body. Sorry I have no definitive answer on this question, and you’ll find an entire range of answers. Based on the advancing age of some patients, I do think that some drs just don’t deal with the issue.

Those of us with mds have a precarious relationship with iron. While we may be anemic, or having a low hgb, we may at the same time be iron loaded, thus the advice not to add additional iron through supplements. B vitamins, especially B12, B6 and folic acid, should be the choice treatment of anemia. This is true for healthy people as well; a low hgb does not suggest more iron!

The build up of red cell antibodies is in a lot of ways the luck of the draw. It certainly can make finding compatible donors in some cases difficult. It is suggested that if a transfusion, request filtered and irradiated blood. Leukoreduction is called for, appropriate, and recommended if the patient is a BMT candidate. Because we are patients with blood (marrow) disorders, most of us are potential BMT candidates. With BMT age limits rising and experimentation with mini transplants, I would not rule out BMT for any of us. You can see my post from 9/17/2004 on this subject as well as supplemental posts from other members.

Best Regards,
Pam L.

Quote:

Originally posted by Brian:
My father (72) was diagnosed with MDS REAB-2 in November, and up until this time has been in good health. Currently his WBC are low, particularly his neuts. The RBC also have fallen to 9.6. Blasts are at 14%

Because of his age, the doctors don’t recommend a mini-transplant. At this point they seem to be recommending supportive care, which I understand to be antibiotics and transfusions.

The doctors have described the downside of the transfusions; particularly the build up of iron and antibodies. It sounds like these problems will take some time to develop.

How many transfusions can you have and how long could it take for these problem to develop.

Any information is appreciated, and thank you for your help.

[paml]

Carrie,
Everyone has their own way of calming themselves. I think that if you have a plan before the dreaded event (whatever it maybe) that it makes the event easier to work through.

Here are a few suggestions,
·Practice any relaxation breathing techniques.
·Sounds corny, but if you can relax into a place or location, i.e., the beach, this may lower your anxiety.
·Listen to your favorite music.
·Think of all the people that you’re assisting by your very generous gift. Many of us on this Forum have had to rely on people like you who have stepped up to share.

I applaud your bravery and thank you for your gifts of time and blood.

Best Regards,
Pam L.
(Transfused 9 total units since 1987)
p.s. As a precaution, make sure they lay you down this time as well.

[paml]

Performing testing for bcr:abl gene rearrangements is what is used to exclude chronic myeloid leukemia (CML).

Pam L.

[paml]

Hi Jodi,
I go in for labs based on the need for monitoring. Like Neil, I’m on Procrit and currently go in monthly, (I administer my own shots). Prior to the Procrit, I had a 6-month period of falling counts; therefore I had labs done weekly or bi-weekly. Three months is about the longest I’ve gone without checking in.

Best Regards,
Pam

[paml]

Hi John,

As I’m sure you’ve researched, Myelofibrosis (MF)is a Myeloproliferative disorder (MPD). There is a MPD Foundation. You can find them at the following address,

http://www.mpdfoundation.org.

There is also a listserv for patients and caregivers with mpd’s, you can find the signup address for this listserv at the following link,

http://listserv.acor.org/archives/mpd-net.html

While MPD’s and MDS have many similarities, they are also like patients with these diseases, there are also many differences. From my research the three physicians that are mentioned as experts with mpd’s are John Camoriano at Mayo in Scottsdale, and Drs. Tefferi, or Mesa in Rochester.

I’m unable to comment on the high WBC you mention, however I’ve read that the rise in your Dad’s PLT count maybe a normal post surgical reaction. Interferon and Hydrea are two treatments that are also often mentioned with regard to MF. The successful treatment for MF will control the spread and take over of the fibrosis in the marrow as this will push the blood cell growth into the long bones and organs.

Best Regards,
Pam L.

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