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Sat Aug 25, 2007, 04:01 AM
I have just been told that I have low grade "preleukemia" I understand that this is some form of MDS. I can't see that I have it though. My Hematologist wouldn't tell me anything, just caught a few comments, such as "Unusual", Marrow shows same as blood. T-cells. Whatever it is/was found in routine blood count by my family doctor. After three monthly blood counts which had higher than usual T lymphocytes he ordered Flow Cytrometry. That was unusual enough to see the Hematologist. Had two or three more FC's, BMB, two CT scans. A few small lymph nodes in my neck. The first visit to the Hem was in April 2007, and the last 21st August. I'm to see him again in three months after another lot of blood tests. I know he's been very thorough, but he won't talk to me! I asked for my test results but he only gave me two pages from the last lot. From this I see that my lymphocytes are back to normal range, 3.6, and the only abnormal things are Alk, Phos, 176,U/L (30-175) and ESR, 29(1-25). Also P EPG wasn't quite right, I don't have that written down. So if I may ask how could I have MDS? From all that I've read everything should be much lower, the blood cells I mean. I'm not anaemic, Hb is 131. If it hadn't been for all the tests and visits I wouldn't have given it all any thought. Oh he says he'll watch and wait. Has anyone any comments please? As well, I am having lots of dental work as my gums had receded and I had peridontal disease. Al the top ones are being pulled! Three more to go. I wonder if that made my Lymphocytes be more normal? Less infection I mean. I have an idea I shouldn't have poked around looking at all the stories! I felt OK till I did this.<G> I've only been feeling tired. Wattle
Kevin R B
Sat Aug 25, 2007, 06:42 AM
Sounds to me like you need to get a 2nd opinion? If you can afford one that is. Otherwise read all that you can on these forums and make a written list of questions to ask your doctor when next you see him/her. It's no use going to see the doctor with questions in your mind only as one often feels intimidated during the consultation. If you have a list of questions then you can tackle them one at a time and write down the answers. Even if you don't understand the answers the doc gives you, at least you can come back to these forums and ask fellow MDS patients their explanations.
I have learn't little about MDS from my doctor - most information has come from the Internet. It also took my doctors about 8 weeks (and 4 BMBs) to come to the conclusion that I had MDS. For the first 6 weeks I was told that I had AA, then AML, then back to MDS (which I was far happier with than AML I can tell you!!)
I pray that your doctor is mistaken and that your diagnosis will be something more easily treatable than any of these bone marrow diseases.
Think positive at all times - your body will respond to a strong mind.
Sat Aug 25, 2007, 07:58 PM
Thank you for the reply. I will get another opinion if the next visit isn't fruitful regarding information. The Support from the LL foundation is great so I'll take up the offer of help to see another Haematologist then. I can't see that there is any hurry yet. I was very relieved because I thought it was heading down the Lymphoma road when I was told it wasn't leukaemia! Now that I can think more calmly and having read a bit about it I can see now that it is marrow that he's thinking. He asked if I'd had any bleeding, no, and auscultates my belly, the CT scan mentions that there's no free fluid in it, the feeling for lymphnodes had me tricked though.<G> I have a few things to get done before I cancentrate on MDS stuff. Like a colonoscopy for which I've been on the list for months, and the rest of my dental work, and a luncheon for family, (daughter in law is arranging that) and a wedding reception for my daughter who eloped with our blessing. I can wait till November.Thanks, and I'll keep reading these threads. oh yes I don't pay for any of my bloods, specialists or treatment.<G> Australian.<G> Wattle
Sat Sep 1, 2007, 09:51 AM
change the doctor ! Chose s.o. who ist also "mensch" and sensible enough.
There are certainly some hemos, who deserve that signification.
This will help you so much.
Sat Sep 1, 2007, 08:20 PM
I did talk to my own doctor whi first saw something to follow up. He's explained most of it to me, and told me to tell the Hem to talk to me.<G> Right! Of course I try to get him to talk, I asked him for my test results and he gave me two pages of the latest, without two important ones. I think he doesn't want to tell me. silly man, I don't panic! I'm very curious though! I really may get a second opinion after the next visit in November. It helps to chat, thank you all. Wattle
Sun Sep 2, 2007, 03:02 PM
I asked the nurse for copies of test results. She is more than happy to give them to us. When Bob gets his cbc he gets a copy from the lab in his hand. Then we can ask questions with the numbers in front of us.
Also We ask the nurses to explain the results in between office visits, because they have more time. I like our Hemotologist but he is very busy and sometimes seems to think we understand things that we don't. By the time we think of questions we are out of the office. So we ask the chemo nurses who will look things up for us if she doesn't know.
Hope these ideas help.
Sun Sep 2, 2007, 06:59 PM
I see the Hem. at a pathology collection centre. He's employed by them, and see patients as an aside I think, not really sure. But I know he travels to at least one other collection centre. There are no nurses, just receptionist and the pathology staff. I don't know if they'd give me copies of the results. I spose it wouldn't hurt to ask, since "He" wouldn't. You are helping me work something out. Thank you. Wattle
Sat Sep 15, 2007, 08:05 AM
Hello All. I've had a dreadful couple of weeks. My dear husband of over 40 years died suddenly. I can't realise that he won't be around. Nor can anyone who knew him. He died the day after Father's Day, and my daughter, the newly married one, had told him she may be pregnant. He was sooo happy! First grandchild. She had an ultrasound and she is, very early days.
Then I did the colonoscopy bit against my will, and have a heap of polyps. Or had. So I'll be back again in another year. Been feeling really horrible, naturally I guess. Just needed to talk. Thanks. Wattle.
Sat Sep 15, 2007, 04:15 PM
I am so sorry to read that your husband passed away. What a shock it must be to you and your whole family. I'm sure that that grandchild will be extra special to all of you.
Sat Sep 15, 2007, 04:59 PM
You are in my prayers.
Sat Sep 15, 2007, 07:43 PM
I am so sorry to hear about your husband. You have had quite a time of it lately. Hang in there. Keep thinking about that beautiful grandbaby on the way. They are so incredibly precious! I am glad your colonoscopy was OK except for the extra polyps. I have those too. They can be worrisome, but often they are not a real problem. I am glad you found us.
Sat Sep 15, 2007, 08:47 PM
Thank you everyone. I can't concentrate well, and I'm lucky that I can leave my own health to the Watching game. I'll have to start an exercise program to try to stir myself. Getting very rut confined and reluctant to go out. could get house bound if I don't actually make myself go. Almost panicky! Not at all like me. My husband used to say I was "never home". Anyhow I'm, still wondering what's wrong if anything, when I have a moments thought. Thanks for support. Wattle.
Sun Sep 16, 2007, 04:17 PM
Your test results are yours and you can demand and get them. We always do. If you were at the recent meet in Las Vegas, you would have met several of us who are keeping critical test results on spread sheets. Kirby Stone gets the award from me as having the best and helping me improve mine.
But more importantly, docs can be wrong! Since we returned from Las Vegas, we have been questioning why B6 is helping Paul with his diagnosed MDS. Last blood test is now almost normal. I sat for hours pouring through his various tests. There had been 1 very scary test that was way lower in every area than his previous tests, even the one just a week or so before, as well as those that followed within 11 days. Everyone, except the hematologist (voted one of Phoenix's best hematologists), who can't understand why Paul is doing so much better. has come to view that test as a fluke. BUT, it was upon that test that his diagnosis, plus the bone marrow biopsy, was based. Because it seemed to drop so fast and hard, it propelled everyone into action. That combined test result was sent to the MDS Center at Stanford and they concurred with his diagnosis. We are soon to go to a different BMF center to get a completely 2nd opinion. Our internist shared with us (after my findings) that he has felt for sometime that Paul must be misdiagnosed. He felt that, but he never pushed us to get another opinion. There's a lot to learn from this story and our story is by no means complete. But the first lesson is to get ALL your information and keep track of it. Insist that your doctor talks to you. It really may be a matter of life and death!!
Sun Sep 16, 2007, 08:20 PM
HI is Kathy? I'm not in the States.I may get another opinion soon, but have to deal with other family matter just now. Just need to write to clear my own head if possible! It's nice to know someone is there to read my ravings. There could be nothing wrong with me as well as something! Or instead of something. I am curious but when I get some energy I'll try another doctor. I did ask for my results and was given two pages of the latest ones. Without two results. Protein EPG and cardiolpin. I managed to see the EPG while holding my notes before the colonoscopy<G> That was higher than normal. The cardio was in normal limits. The EPG said no monoclonal banding seen. That sounds good! I just was wondering if I'm dismissing some important symptom. Probably not and I'd most likely think nothing of any.<G> Hard to see what's going on with no definitive diagnosis. Yvonne
Sun Oct 7, 2007, 08:23 PM
Hello....I've just been diagnosed with MDS and am very happy to find this forum. I've been anemic since my hysterectomy for uterine cancer a little over two years ago. My hemoglobin ws normal until after the surgery and was 10 when I took my first round of chemotherapy in Sept. 2005. I've been anemic ever since. During my radiation treatments. I was averaging between 8 and 9 and once dropped to 7.2 and received the first of five transfusions to date. I had a bone marrow biopsy in August, 2006 and was told it was normal except that it wasn't producing enough red blood cells, but I didn't have MDS like my doctor thought I did. Big Relief!!. Then,last week, the resiults came back frpm my 2nd bone marrow biopsy and I was diagnosed with MDS.
My hemo talked a lot about chromosomes and DVA and a lot of other stuff that I wasn't really hearing. I was in shock. Now, a few days later, I have a lot of quetions and my hemo is out of town. I plan to find another hemo doctor for a second opinion, but I will probably start Vidaza treatments as soon as next week. I just don't feel like my questions have been answered sufficiently. Maybe the 2nd opinion doctor can help me. My regular hemo won't be back until the 21st. I also have diabetes, so I don't know how that will factor into my condition. Does anyone have any suggestions?
I am so glad I found this forum...I've beem reading yur comments and y'all seem like a very caring group. Thanks for listening....
Sun Oct 7, 2007, 10:56 PM
I am glad you found us! I am sorry you are having to go through this. You could see if you can get a copy of the bmb report from one of the nurses in your hemo's office. You can learn a lot that way and it will help clarify your questions.
Mon Oct 8, 2007, 12:18 AM
Welcome to Marrowforums! Getting second opinion about your MDS diagnosis and suggested treatments is certainly a good idea, especially with as complicated a medical history as you have. You can look at our Medical Resources page for a list of major U.S. treatment centers to find one near you. If there isn't a center close by, you'll want to try to find a hematologist who is experienced in dealing with MDS.
The Aplastic Anemica & MDS International Foundation has educational information about MDS that will help to answer many basic questions for you. You can contact them at 800/747-2820 or order their Myelodysplastic Syndromes Basic Explanations (https://www.toad.net/~aafa/aplastic/disease_information/educational_material/index.php) packet online.
There is a lot of knowledge to be gained from our members, too. Just let us know what questions you have.
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