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lindajoMember
I was diagnosed at age 30, 20 years ago. I had a number of transfusions early on and then my need for transfusions decreased. I haven’t had a transfusion in 2 years. Treating infections and other health problems are imperative in getting control of MDS. Learn all you can. There are options for treatment including watch and wait.
lindajoMemberMDS may have a viral basis. It is possible the disease will reoccur. It is imperative that you get copies of all of her lab results and doctors notes. If she gets sick again knowing what was done and when can save you valuable time in a critical or emergency situation. Even if she gets a completely different health problem that is unrelated it might save her expensive and painful testing in the future. I am grateful she has recovered from her crisis.
lindajoMemberWow I can’t believe you moved everyone from Florida to Michigan. It is possible to live for years without treatment other than wait and watch. I have had 20 years with only transfusions and antibiotics as needed. Florida’s climate to me would make the disease easier to deal with. Slow down and don’t spend every day dreading the day when he will start having major symptoms. It is possible that things won’t be as bad as you are imagining. It is the unknowns that are difficult to deal with. Learn as much as you can and slow down a little. Taking care of yourself is just as important as taking care of your Dad.
lindajoMemberI have had 10-12 bone marrows. They do numb the skin around the site. It does hurt a little when they pull the aspiration but it a brief thing. I have had splinters and paper cuts that have hurt just as bad. Each persons tolerance is different. If you want sedated get sedated. For me the first time I had some valium. The hangover from the valium was worse than all of the pain from bone marrows together. None of the pain is as bad as childbirth was. Just breathe through it and focus on something else.
lindajoMemberNo one can predict when the end will come. His weight or lack therof is a huge problem. He has to eat or get nutrition and gain some back.
Not eating for a week can cause death in anyone his size. Many have survived over 500 transfusions. Priority for his comfort would be to get food in him anyway you can. I will pray for you.
lindajoMemberJet fuel or any type of exposure to benzene can increase the risk for MDS and leukemias. You might look for information from the Vets of the Military on various leukemia sites.
We are lobbying for more research dollars from Congress.
They are also looking into exposure to Agent Orange. Google those to things and you will find a lot of information.
lindajoMemberThere is another post somewhere. I have already made it to year 20. My daughter was 7 when I was diagnosed at age 30. She is now 27 with 2 little boys ages 3 and 1.
I have been able to be a Mom and be there for almost every event. I missed a couple of softball games and a music concert in 7th grade but that was it. Considering the way she played clarinet missing that sound wasn’t a big loss.
Don’t give up my initial prognosis was 6 months to 2 years. with very little treatment other than wait and watch I am still here. Be proactive and learn as much as you can.
lindajoMemberGet free information from the Aplastic Anemia & Myelodysplastic Syndrome foundation. Go to the home page and click on links.
Their information is easy to understand. Currently there are 3 classification systems. The first is (FAB) is French American British system. The second is the IPSS International Scoring System. The third is new from MD. Anderson Cancer Center and is gaining acceptance. I don’t get it yet/ Find out what system your hematologist/oncologist is using to classify you.
There are many treatments that can help you postpone a transplant and live a meaningful life. There are several types of transplants. You will need to get copies of all of your test results and labs to make sense of anything you read and to refer back to before asking your doctor questions. Don’t be afraid to take a tape recorder with you to your appointment. This forum is a great place for information and support. Good Luck Andy.
lindajoMemberMelissa, I know you want some sort of time line or prediction, but most good doctors won’t give you one. MDS is widely variable from one patient to another. It is possible no matter what treatment she does or doesn’t have that your Mom could do well for periods of time.
She might have to stop working in order to have quality of life. With a low white cell count a school is probably a high risk place to be. It will keep her exposed to one virus after anonther and make her more fatigued.
Whether she does or not should depend more on her desire to continue working and what she wants to do. She will be healthier if she feels like she has made her own decision and she is happy with it. Knowing what she wants to do may take her a little time. You can support her by listening to what she wants to do and supporting any decision she makes.
You are doing great already by seeking out this website. It will answer a lot of your techincal questions and give you support as a caregiver. Your doctor has steered her to a Center of Excellence for MDS. That is a great first step. You will get excellent care there and information that you both need to make decisions. Keep in touch we care. Lindajo
lindajoMemberMaybe we should start a new thread Smurf. My 19 year anniversary and my 20th and now on the same board.
lindajoMemberSmurf, I am so sorry I didn’t see this post until now. I take B- complex time released vitamins. Calcium with D3 and Folic Acid. The amounts vary depending on my counts. My white cells are generally in the 2.5 range. Platlets are generally normal and my red cells are always low. I stay between 9.1 and 10.2 hemoglobin most of the time. If my hematocrit falls below 30 my counts genrally nosedive. Sometimes a broad spectrum antibiotic will help it bounce back. I get blood work every 6 weeks now.
lindajoMemberJust an update. It has been hard to find the right amount of pain medication. Tramadol has worked most of the time but there are times when it just isn’t strong enough. If I wait long enough pain episodes pass but it is harder these days to do what I need to do and have to do.
lindajoMemberHow is your weight. Within normal limits or low. What and how are you eating? Don’t be shy, ask for a referral to a nutritionist at your transplant hospital. Write down everything you eat between now and when you meet with them. You may need a higher calorie count than you are taking in. Are you exercising at all? Ask for advise on what would be the best physical activity for you. Whatever you do don’t eat turkey for lunch. That will always make you sleepy. Good Luck and Congrats on making it this far.
lindajoMemberA swollen spleen and need for transfusions is very common. It doesn’t mean the end is near. He can recover from many crisis points if he gets prompt and knowledgeable treatment. Look for a recognized Center of Excellence. The international branches recognize hospitals that are on the cutting edge of treatment and research. I am not familiar with the one closest to you. Infections can cause even earlier destruction of blood cells. Hopefully they also have him on a broad spectrum antibiotic. How is he doing today?
lindajoMemberStable is great. I have been called Static,( not getting better, not getting worse) for 20 years. Stable is one step up from Static. A minute step but still a step up.
Try not to worry too much. Go on with your life. Our disease is rapidly becoming manageable and even when it isn’t we have the best people working on treatments and cures. I will be praying for you.
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