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Suzanne
MemberPam, don’t be too nervous. Maybe as a nurse you know a little too much-that makes it hard! I was scared too but had few problems. a little nausea that they took care of immediately with meds. I did get a blood infection and a fungal infection during the first round when My counts were down-but again mild and taken care of with meds and They said pretty typical. There were about 4 or 5 days I was dragging but most of the time I was up and walking in the halls seveal times a day taking my Drug Tree with me. Hope your experience is ok too. I had a follow up round about 30 days later and breezed through with no problems. They said because my white count had come up in between and taken care of places that were suseptable to infection on the first round. wishing you good luck. keep us posted! Suzanne
MemberWhat a great idea. Makes it so much easier to keep track of who has what clasification and what they are doing. I have changd mine too. suzanne
MemberI had a fungal in the lung when my counts were low from chemo. I was in the hospital and they said it was quite common. They treated me too and eventually it did go away completely.I too took medication for a while. They did say the best thing for it would be for my counts to come up so my own white cells could fight it.
MemberI second that!
MemberDawn, I have not had the experience of the Dr’s in my center of excellence doing what is cheap. The problem is that they do not know what will work. People react differently. My Dr’s have done what they think might work keeping in mind my wish to maintain quality of life. Until a few months ago there were no treatments approved for MDS. Now there is Vidaza and hopfully both revlimid and Zarnestra will be approved soon.But they don’t work for everybody and they probably don’t know why yet. The only place I saw a protocaol was when I had Induction chemo for AML. Even then it seems to be done slightly differently in different places. everything else I have done has been a drug trial. suzanne
MemberHi Pat, I was told that it takes the counts longer to come up every time you have chomo and that after the first time the platelets are the most effected. I had Induction and then 30 days later a second round follow up round of 2 of the three drugsI had for induction. I too went into remission with the first round but so far I have not relapsed. It took my counts over 30 days to come back the second time. Then they put me on a Zarnestra trial for a year hoping to increase my chances of staying in remission. I am a little younger then your Mom-I’m 63 & had no other medical problems. If you Mother is in remission again, you might check on the zarnestra trial going now in many places that is open to patients in a second remission but I do think they will want her counts up to a certain level. Barbra’s husband Ron is on that one. It is listed on the government list and is being run by Encologists instead of Hemo’s. I have had almost no side effect since they got the right dosage level for me. Zarnestra is a pill and is also used for older people who for one reason or another can’t take the induction chemo. Suzanne
MemberDawn, I am not sure I would wait until spring to see someone at a center of excellence unless your Dad has made a final decision to pursue supportive care only. This disease can change quickly especially if he is at risk for transforming to AML. Suzanne
MemberDawn, How old is your Dad? And what is his classification of MDS? Is he being treated at a Center Of Excellence for MDS? If not he should go at least for a consultation and treatment options.
There is a list of centers on the main page of this site. If he is Wash State, Fred Hutchinson is well known at least for transplants , I don’t know how much other treatment research is done there.We need more infomation ,then people in a similiar situation will give you inofo about their treatment experiences. People react very differently to the disease and to the meds so there are no hard and fast answers. Neil has a great list of questions for talking to Dr.’s. and will probably email them to you when he sees your post.suzanneMembercongratulations having a lot of pluses on your side. As everyone says your age makes a transplant less of a risk and having so many potential matches is wonderful. Ask questions, Collect all the information you can and make the decision that feels right to you. Then go for it!I hope you have some family support to help you through whatever process you decide to follow.It really helps to have someone else along on appointments and treatments to listen and ask questions you might not think of.Keep in touch with developments. We will all be cheering you on and wishing for an easy road to a cure so you can enjoy a wonderful long life! Suzanne
MemberJohn, I just read your reply to Eve. I had a very negative response when I first went to a center of excellence too. Others have reported that enough that I now know that reaction is common.I guess they do do many consultations and second opinions. My whole feeling changed once I became a patient there and they were in charge of my care.I have strong personal relationships with all envolved in my care and I trust their advice completely. If your feelings are really strong, try a different Dr.at Sinai or another center.
MemberJohn, If you haven’t already, take you father to one of the “centers of excellence” if you are dealing with MDS. I honestly don’t know if the same places are expert in the myelofibrosis. Because there are not consistant results to any treatments for MDS, Dr’s do not know what will work for any given patient so in a way they are “grasping at straws”- somehow “educated guess” sounds better to me.Since Vidaza is the only “approved treatment so far,other then supportive care, that is what a local hemo can get. If you are at a center of excellence doing research they have access to trial drugs that might have a better chance of success. The beginning, when you first learn of the diagnosis is alway scary but often things settle down once you know more about your dad’s options. Many of us are well beyond the time periods given in the first prognosis and have had and are still enjoying a very high quality life (valuing every day) Suzanne
MemberJim, they are doing transplants on those of us over 60 now. A full with a perfectly matched sibling and otherwise “mini” and the new “Midi” we are just starting to hear about so don’t totally discount it until you talk with a mds specialist and look at all the options for her. Suzanne
MemberBec, what happy news! Hope 2005 is full of happy days for you all. Keep us posted suzanne
MemberJim, These are for a female and they are the values they watch for me. Different charts for normal can vary slightly and they are slightly different for males and females.(males are slightly higher.
WBC 4500-11000
RBC 4.0-5.20
Hemoglobin 12-15
Neutrophil 1500-7800
Hematocrit 36-46%
Platelets 150,000-400,000
SuzanneMemberwhoops! It is vidaza that is approved, Revlimid I believe has been submitted and Zarnestra is next to be submitted. suzanne
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