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chuckler, Sorry to hear about your situation. The first thing you need to do t is get a bone marrow biopsy, unpleasant yes but necessary to find out if you have dysplasia. Talk to your doctor about this. Are you currently seeing an hemotologist/onocologist? Are you going to a cancer center or research facility?If not you should be. Don't give up even if it seems like you doctors have. I have had low WBC for about 12 year. Last xmas I began feeling like something was not right (ie weight loss 25lbs in 5 months, loss of appetite, bleeding gums, night sweats, frequent infections) I went to my GP, when he heard my history of leukopenia/neutrpenia he freaked, rushed some blood work that came back: WBC 3.5, neutrophils were slightly low,reds were slightly low, lymphs were slighly high, all borderline low or high. I can't remember counts exactly because that was a while ago. the doctor summed it up as an infection and sent me home. This kept happening over a period of 6 months. I went to my hemotologist/onocolgist and and he explained the weight loss as post pregnancy weight loss. My son was turning 4 in 3 weeks :confused: . I was beginning to feel like an over reactive hypochondriac. more infections: strep throat 5xs in 5 months, sinus infection, swollen glands, sore throats, e coli infection, cellulitus. Finally I had my hemotologist/onocologist transfer my records to a larger cancer research institute. They did a bone marrow biopsy immedistely. Diagnoses, grade 1 cell dysplasia in all my precells in my bone marrow. I don't want to scare you but you need to know that if this is what you have it is very serious. The only cure for what I have is a bone marrow transplant, but the odds are against me because people with mylodysplastic syndrome do not seem to do well with bone marrow transplants typically, sure maybe I could get a cure from a transplant but there is a high propability it could kill me and if it does not graft properly I'm in real trouble. If left alone the cell dysplasia could turn to a terminal form of acute myloid leukemia. A lot to think about I know :eek: I just had another bone marrow biopsy yesterday. I won't have all results for two weeks. Be persistant, this is your life. If you can't find a doctor who you feel confortable with, find another. Don't give up, the answers you seek are just around the corner. Please talk to me as much as you want. I'm here. Keep the faith and always keep fighting :wave:

ps if your doctor does decide on bone marrow biopsy get your doctor to prescribe some anti axiety drugs and talk about pain management for afterward, expect to be pretty uncomfortable for about 2-3 days afterwards. I take hydrocodone(vicodin) It helps a lot, I would not be writing this right now if not for this, but try not to take these rxs for long after because they are addictive. I usually start self medicating the night before with xanax and then take xanax in the morning of biopsy and about a half an hour before, they should call xanax the bravery drug it really works. Then I take the vicodin for two days afterwards only so that I don't become addicted.
You have me a little worried about you. O.K. A lot! :confused: I do not want you to wait on getting your CT. I know youíre scared, I know you donít want to know, but you have to know. Honey, you have come so far in this fight donít quit now. I know it gets tiring, I know it gets old and relentless, but you have to fight!!! :mad:
You are young, you are a mom, a wife, a friend, a daughter. Fight for those reasons alone.
Lymphoma is a very curable cancer, especially if caught in time. So promise me you will call your Dr. and set up an appointment. Don't wait! :nono:
Good news is, I have a swollen lymph in my clavical area on the right shoulder side. It does continue to grow but it did come up negative on the CT Scan.
If you look up Lymphoma which Iím sure you have, the lymphs in the clavical area usually only swell with serious infection or cancer. Itís a [COLOR=DarkRed]BIG RED FLAG [/COLOR] to Dr.ís when those lymphs are swollen. Also the oneís in your pelvic area are of concern. At least those were the two major concerns with me.
I also have night sweats but not every night. Iíll even get them in the day time. Do you itch a lot? Also, I run temperatures quite often as well. I know another thing I have noticed that hasnít gone away since I had Bronchitis. Is I have hoarseness of the throat. I always have to clear it when I talk and that doesnít always help either. I havenít seen that as a sign but it has been an issue with me.
As for the MDS, I have done some research and it looks like people can live a real long time with it. Depending on if it itís slow or progressive. Itís hard to believe itís not a cancer but acts exactly like one. I still havenít talked to the Oncologist at Childrenís. Here I am lecturing you about getting things done and I dropped the ball myself yesterday.
I definitely know we are sick from water contamination. I will look up the Benzene and MDS link you told me about. Itís one thing for me to be sick. Sure, I am young but, itís so hard to imagine my little baby ill, and what heíll potentially have to go through at such a young age. The most he should be worrying about right now is playing but instead he has all these Dr. apptís etc to go to. Heís so traumatized by it all that he literally has nightmares about getting his blood drawn, and Dr.ís poking him.
Question for you, do you have extreme leg pain? I ask because my son and I both have it. Itís always his right leg, and itís predominantly my left but both do hurt.
I always feel like a have the flu as well. That used to be sporadic but now itís just about on a continual basis.
I want you to remember that Jesus is your peace. Lean on Him during these very difficult and scary times. (Peace I leave with you, My peace I give to you. I do not give as the world gives. Do not let your hearts be troubled, do not be afraid. John 14:27) I have that verse written on my desk at work to consistently remind me who HE is and that I don't need to be afraid. (Trust me I am scared!) I am here for your support and needs. I will do anything you need me to do to help you in this battle. Take care and PLEASE make that appointment. I am hoping your next posting will give me a date for your CT.
Iíll be praying for you. Iíll pray for your strength daily. :angel:
BYE!! :wave:
I am so sorry to hear about your CT Scan. Inconclusive means they couldnít tell. I really donít know how the CT works but I know the colors show up differently. If itís a cancer mass it looks real thick and dark you canít see through it. If itís not, they can see a darker spot but you can usually see through it. Thatís what I was told.
I pray itís just your system fighting the MDS etc. and that itís not lymphoma. How come they arenít biopsying it to make sure?
Itís weird you mention your lymphocytes. Tristen produces really high amounts of lymphocytes and very little neutrophils. That was even verified by the BMP. They told us it may not be reason for concern though. :confused: I did tell them I thought it was and thatís probably why heís always sick. And they said they will wait until more testing comes back to say or not. They called it some type of dysplasia but itís not MDS. If you follow his blood work since he was an infant he produces on average over 20% higher lymphocytes than normal. Even when heís healthy. But, they said it might just be because he is sick. O.k. I understand that, but then how do we prevent him from getting sick and what causes it, if itís not the low neutrophils? I donít know, Iím confused. When I get the report Iíll post it on here for you. See if it makes any sense to you.
My husband is a huge artist and he has recently started oil painting. I started with him this weekend. Itís a great stress reliever. Especially for us right now. Itís been difficult.
I hope youíre still trying to enjoy things you love doing at this time. Keep in touch please with all thatís going on with you and I will do the same. Take Care!! :wave:

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