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Zoe
MemberBill,
There is a seperate category for 5q Syndrome. It is a newer classification. 5q Syndrome has a specific set of qualifications: 5q can be the only the only chromosomal abnormality, platelets run normal to high, wbc is normal to slightly low, no excess blasts. Anemia tends to be moderate to severe. It carries an excellent prognosis compared to other categories of MDS.
It is possible to have a sole anomoly of 5q-, but not be 5q Syndrome. It is not possible to have any other chromosome abnormalities and be considered 5q Syndrome. Hope this helps.
Zoe
MemberLaurie,
Welcome to the group. I was diagnosed 2 years ago next month. I have responded well to Aranesp, though my reds aren’t holding as high as they were, they are slowly trending down. Whites and platelets are fine.
I know my Dr. has a 5q patient who was diagnosed 30 years ago. She is now in her 70’s, you can go strong for some time with a 5q dx.
The struggle with energy is my biggest complaint. Sometimes I get discouraged, especially when fatigue causes me to be grouchy to my family.
Feel free to ask any questions. There are many helpful people here.
Zoe
MemberJack,
I am truely sorry to hear about your wife. She fought a valient battle. I will pray for you and your family.
Zoe
MemberCzaring,
Pretty user name!
Revlimid can drop counts. Usual protocol is to stop Revlimid until counts rebound, then restart at a lower dose. Don’t panic, the count drop is to be expected, and shouldn’t be permanant. How long ago did she stop her Revlimid?
http://www.rxlist.com/cgi/generic/revlimid_ids.htm
The above link should take you to a page explaining the protocol.
Keep us updated.
Zoe
MemberThat is wonderful! I am glad to hear your news. Praying for continued success.
Zoe
MemberI am sorry to hear about your loss. Thank you for your willingness to use your pain to help others. You will be blessed beyond measure.
Zoe
September 5, 2008 at 1:09 am in reply to: Why have infections while the while blood count is normal? #21292MemberI saw my hematologist today. The CNP said something about a test that tests your immune system somehow. They didn’t say anything else about it because I have not had to be hospitalized, even though I have been sick more. It might be worth asking about for your brother. Sorry I didn’t get a name for the test, except for she referred to it as an immunilogical test. Maybe someone else here knows more about it.
Zoe
MemberViola,
I am so sorry for your loss. I know you were close to your dad. I will pray for you also.
Zoe
September 3, 2008 at 2:04 am in reply to: Why have infections while the while blood count is normal? #21290MemberI don’t know the medical answer to this question. However, I do know that my white count is also normal, but I have had more illness this past year than any 5 years combined before my diagnosis. It also takes me much longer to get over things. I always end up sick for a month, in the ER with high fevers, on antibiotics. I don’t know if it was just a bad year, or if it has to do with my MDS.
Zoe
MemberLynn,
That is wonderful! Best wishes for continued good health.
Zoe
MemberJulie,
Welcome to the board. Could you tell us a bit more about what type MDS your husband has? Does he have chromosome damage? Does he have excess blasts? Is he seeing a doctor who is familiar with MDS? It is best to go with someone who has treated many MDS patients. Feel free to ask specific questions, there are some very knowledgeable people on the board.
Zoe
MemberWatch and wait is hardest in the beginning, at least it was for me. If things stay stable, it gets easier as you adjust to the shock of the diagnosis. How are his counts right now? Let us know when you find out about any karyotype abnormalities.
I am glad you found us.
Zoe
MemberLynn,
That is wonderful news. Good luck with your agility. I have always wanted to do that, but the distance to a facility is too far for me to manage. Enjoy your dogs and new found energy.
Zoe
MemberRoger,
That is typical protocol for Revlimid. Here is the dosing schedule recommended by Celgene
http://www.revlimid.com/hcp/hcp-myelodysplastic-syndromes-dosing.aspxZoe
MemberHow wonderful, a son! Congratulations! Prayers that your counts will now stabelize in a more normal range. Enjoy Nathan. Aren’t they precious?
Zoe
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