[LeAnn Duke]

Hi Mike, My name is LeAnn and I am 58 with MDS Refractory Anemia with ringed sideroblasts. My MDS just affects my red blood cells at this time and I have too much iron attached to my RBCs. I am low risk at this point but transfusion dependent at one per month. I am sorry that you all are going through this and the problems with the slow possibility of a transplant in your area! I’m sorry that I don’t have anything to offer as far as help but I just wanted to let you know that there is someone out there who read your post and will be praying for your wife and you and that she can find a donor and move up the line for quicker treatment of this disease.

I don’t kow much about the other types of MDS and their instability but know in general from my own Dr that it is an unpredictable and unstable disease. I truly wish you all the best of luck in your search for the right answer and the best treatment for her. God bless you both!!!!

[LeAnn Duke]

Hi Linda,
I am sorry that you all have to go through this, MDS has brought me to think in a very different way. My name is LeAnn and I have MDS RARS (refractory anemia with ringed sideroblasts). I am 58 which my dr said as well that I am young for MDS. My blasts are still below 5% so I don’t have the issue of “cancer” yet. I am considered low risk and am only tranfusion dependent at this time. I have tried the drug Erythropoietin (Aranesp) injections for three months and the injections did not work to help stimulate my bone marrow to produce more healthy red blood cells so we are doing the transfusions (2 units) monthly. I am still relatively new to this only having been diagnosed in June of 2015.

I certainly agree with Jeff that positive thinking is helpful, but it isn’t always the easiest thing to do when you don’t feel good. I have the general fatigue that goes along with anemia, and when my hemoglobin begins to drop (it never gets much higher tha 10.4 after a transfusion) the other symptoms are blood pounding in my ears and head and heart palpitations. There is also a general malaise that is hard to describe and much of the time an overall nausea and slight dizziness or lightheaded feeling. I can usually go for about 4 full weeks before going in for blood. But I also agree with Jeff that it is best to live one day at a time and enjoy today. We aren’t promised tomorrow anyway, so that is how I have tried to live anyway! I have learned to take it easy when I need to and rest when I need to. I am usualy in the middle of things so this has been a difficult thing for me to do. I am a homemaker so I haven’t had to adjust any kind of work schedule. I know this is hard for a man especially to have to deal with.

With RARS I have no pain and I consider this a blessing. I don’t know the timeline of progression for this disease but know if I live long enough there will be progression and a future stem cell transplant. I will deal with that when the time comes.

I hope just knowing there are others out there relatively the same age with this same disease will help you all in dealing with this burden. I, like Jeff, want people to treat me the same way and not treat me like an invalid. There are some times when I can’t do certain things but others when I am able that I don’t want someone to stop me from doing what I am able to do. I hope that makes sense! I have been very fortunate to have people in our church who know there isn’t much they can do except to offer to donate blood to me. This gives them a way of feeling like they are helping me and there are several who have my blood type and several who are universal donors. So we are working with the local blood bank for them to come in and donate specifically to me. This encourages me too to remain positive about this disease!

[LeAnn Duke]

Rar, what a story!! Thank you for sharing it with all of us who have yet to get to where you are. I am 58 and have MDSRARS refractory anemia with ringed sideroblasts. I am low risk now and am transfusion dependent. The oncologist tried me on Aranesp, an injection that was supposed to help the bone marrow to produce more healthy red blood cells but it didn’t work thus the monthly transfusions. I don’t have a clue as to how fast this disease progresses but I know it is really changeable and unstable and every month is different. My time for transplant may be far off, I’m not sure, but I have a twin sister that will be my donor so I have hopes that GVHD won’t become a problem. I realize that there can be other problems like C-diff and I pray that won’t be an issue either.

I just wanted to say thank you for sharing your experience with us and telling it like it is!! I am glad you are doing so well. If I can ask, where did you have your SCT? I know most doctors/hospitals won’t do transplant on patients over 70 and say that they won’t accept donors over age 65. However, I hear that MD Anderson in Houston does.

[LeAnn Duke]

Hi Sue, I am sorry that your husband has this very unstable disease. Your description of it being a chameleon struck me as being so accurate. It is different every month it seems.

My name is LeAnn and I am 58 yrs old with MDS. I have refractory Anemia with ringed sideroblasts which basically is means. That my RBCs are the only cells affected right now and that the RBCs that the bone marrow is producing are abnormal in size and shape and are not maturing but rather dying before they can mature. Those same cells also have rings of iron around them so I already have too much iron in my system. I get transfusions (2 units)once a month right now. I too have a oncologist that is some distance away but luckily only an hour and a half instead of 5-6 hours. We live close to Nashville, TN and my oncologist is on the south side of Nashville. He has been very helpful in agreeing to work with a dr here closer to where we live to keep a check on my hemoglobin levels and let’s me get my transfusions at out local hospital. That helps so much seeing it is an all day affair.

I am in a low risk stage right now so I don’t know a lot of ways to help others, but I wanted to respond to your post to just let you know there are many out there who are bearing the same burden and looking for answers as well. As this disease progresses a stem cell transplant looks to be the only sure fix for this. My doctor agrees that the transplant should be the last resort because the risk of treatments can be worse than the risk of the disease when it is at a certain stage. He says when the risk of the disease is greater than the risk of treatment then we will proceed with the transplant. I will keep you all in my thoughts and prayers and hope that a donor can be found for your husband.

[LeAnn Duke]

Hi Vishal, Just checking on you to see how you are doing? I was wondering if you have started growing your wheat grass yet? I am due for another transfusion probably tomorrow or Tuesday so I though I would touch base this evening to see if you are doing ok.

[LeAnn Duke]

Hi Elissa, I was just wondering if you father in law has ever been checked for multiple myeloma. With all the cementing of discs and fractures it sounds different than MDS. Just a thought! I am by no means a specialist it just sound different than any of the others symptoms of MDS that I have read about. I have MDS (RARS refractory anemia with ringed sideroblasts) and at this time it is considered low risk because only my red blood cells are involved. I am transfusion dependent, 2 units a month. The injection they gave hoping it would raise the RBCs didn’t work so I am not on any medication either at this time. I hope you can soon find answers and the doctors can find out what is going on with you father in law. God bless!!!

[LeAnn Duke]

Hi Vishal,
Thank you for sharing your heart!!! I know that this must be so difficult for you especially since you had the chance to come to the US for your job and now because of MDS you cannot come. I am sorry that this has happened!!

You asked where I am from and what I do when my husband goes to work. I live in the Middle Tennessee area of the US and. We live in the country as opposed to city living. It is a beautiful state and with the many seasons it is beautiful to see the changes of the leaves in the autumn and the beautiful flowers blooming in the springtime. I am thankful that at this time I am able to care for myself. I have good days and not so good days but those not so good days don’t come so often and I can just lay down and rest during the hours that he is gone. Our children are all grown and only one son lives close, but he works and his wife is a stay at home mom with an infant and a young two-year-old, so she has her hands full. So I cannot depend on them to care for me. I have friends who have told me that when I need help to please be sure and let them know and they will do what they can to help me. But I am pretty independent and like to do things for myself, and as I said I am still able to do that.

I know the frustration of the heart beating in your ears and in your head. There is a swishing sound when I bend over that reminds me even when I might be feeling ok physically that something is not right. Often I feel my heart beating in my stomach as well and when I am trying to sleep at night it is very bothersome. I cannot go to sleep because it is beating harder than normal. And sometimes it beats hard for no reason. I can be just sitting very still and be resting and my heart begins to pound very hard and fast and will do that for 10-15 minutes and then it goes back to normal. The lower the levels go the harder my heart beats and the more out of breath I can get. It is a very strange and frustrating feeling especially when I am doing nothing. Sometimes just walking outside my house to my mailbox will make my heart thud, thud, thud, just as if I had just walked a brisk mile walk!

I understand very well about having to feel dependent on another person, and feeling guilty about causing someone else an extra burden. It doesn’t seem fair, does it? I am not use to having someone wait on me or asking for a lot of help. Often I feel like I am rested until I get on my feet and then I feel as if my feet and arms weigh 20 pounds heavier than normal. And then I just want to sit down again.

I have also heard that the more acidic a body is the better the chance that cancer can take over and the more alkaline a body is the less chance cancer has. It has actually been difficult for me to have any appetite for food. I rarely can think of anything that sounds good to eat. I don’t crave any foods and cooking has become a real chore because nothing sounds good to eat. I don’t mind eating more alkaline, but it is just hard to find anything appetizing to eat anytime!! The funny thing is that I am not losing any weight. I still eat what I want and when I want. I know that doesn’t make a lot of sense: that food doesn’t sound good and I don’t crave food, but that I eat what I want. It is hard to describe because I used to like things like vegetables and chicken but now they don’t taste the same and when I think of cooking them I just don’t feel the same about them because of the way the food tastes. It’s not just the tast of the food, but I also tire quickly when I have to stand and cook and that doesn’t help anything either.

I have started the wheat grass capsules and have worked my way up to 6 capsules a day. I will be anxious to see in March if my iron levels have decreased any at all. As I said, I haven’t started on ExJade yet so if I can do anything natural that will help hold that off a while I am willing to try it. My husband and I do what we can to stay healthy and we also do probiotics. Mainly we drink something called Kefir. Have you ever heard of it? It is good for digestion and the gut. We have done this for many years so I know of the benefits for me as well as my husband.

I also crave ice most of the time. They say it is a symptom of anemia. My mouth stays dry all the time and I carry a cup of ice with me almost constantly!!! Do you notice that you have that same symptom?

Vishal, I hope this might help you a little. Before I stop posting tonight I wanted to say that I am a mother and a grandmother and so I can tell you that I am sure your mother would have it no other way but to help you all she can. It is the most natural thing in the world for a mother to want to care for her child when he is sick. I know that I would do it gladly and easily for any one of my children or grandchildren. And though she might get frustrated like you do sometimes, I think she will probably even not mind when you snap at her or your dad out of your frustration and anger at your situation. They know you are angry and sad and frustrated and scared and feel helpless. They know when you don’t feel well that those feeling are even more intense. A mother knows!! If you have not already done so, let me encourage you to share your feelings with them and let them know you don’t mean to take out your frustrations on them because they are trying to help you. I know they love you very much and it hurts them to see you feeling angry or helpless or frustrated. I know as a mother, your mother is probably trying to find any way possible to help you to first feel better and second to encourage you to fight this in any way possible! And no doubt your father feels the same way!! So as hard as it is, let them help you in whatever way they can because it is a parent’s joy to help their child!!!

I am praying for you as well that your symptoms will become easier to handle and that you can cope with this disease. I know that as I go through this I have seen already that there are so many people out there with worse diseases and situations that I am in, so I am trying to use my situation to help as many people as I can.

God bless you as you learn to deal with this blow that life has dealt you!

[LeAnn Duke]

Thank you Sarah! I hope you and your mother in law get some good info at the specialist. Keep us up to date on what you learn!

[LeAnn Duke]

Vishal, I thought I would let you know I am going to start using Wheat grass slowly at first to make sure I can tolerate it, but to see if it helps my iron levels. Will let you know how it goes. Hope you are doing well today!

[LeAnn Duke]

Thank you Bob for the information about your wife’s age. I understand now that because of her age, in the eyes of most doctors, she would not be a candidate for transplant. Ha she had the bone marrow biopsy yet? If not you may not know that she can request to be put under with the twilight sleep so she doesn’t feel a thing when they do the biopsy. They are painful even though they tell you that it’s just a little needle going into the bone. When I had mine I insisted they put me out! If she has had it already and ever needs another, she might want to consider being put out even if the doctors scoff at the idea.

Please know that we will keep her in our prayers for some positive news and successful treatment!

[LeAnn Duke]

Laura,

What a beautiful story! God bless your mom as she continues on with her battle and you as you help take care of her!!

[LeAnn Duke]

Hi Sarah, my name is LeAnn and I have MDS (RARS) refractory anemia with ringed sideroblasts. I am 58 and have never had cancer or any kind of treatments. My cytogenetic so showed abnormal RBCs in size and shape. At this time my blasts are below 5% so my risk right now is low.

I am responding primarily to tell you to encourage your mother in law to definitely get another opinion! I don’t know much about the other types and stages of this disease but I have talked with the wife of a man who is now in his eighties who was diagnosed with MDS over 9 years ago. He underwent chemo for two years and didn’t see much change. They did research on MD Anderson cancer center in Houston TX and found they did bone marrow biopsies on individuals over 70. They thought this might be an option for him. While waiting to find a donor they offered him a clinical trial drug (a chemo drug) to see if he wanted to take part in the study. He opted for that clinical trial and that was a little over 7 years ago. He is doing well and just had back surgery and is recovering from that. His wife said the drug he is still taking has had only a few minor side effects and his hemoglobin stays right at about 12 (which is just about a point low for aa man) and the rest of his counts are normal.

That is a success story! That gives me hope for my future too because it gives me an option other than just a bone marrow transplant. I have a twin sister who can be my donor as long as she stays healthy and something doesn’t happen to her before I get to the stage where I need the transplant.

The MDS foundations have what the call centers of excellence around the United States and I would encourage you to look into one of them that might be close to you all. Don’t give up! It is scary and can be confusing but I don’t believe it has to be a death sentence from the start. From what I understand not all Drs know how to treat MDS and there are Drs that treat only MDS patients.

I wish you luck and pray that your mother in law can find a dr that will do everything available to them to help her.

[LeAnn Duke]

Hi Ryan, my name is LeAnn and I have MDS (RARS Refractory Anemia with Ringed Sideroblasts) which basically means that only my red blood cells are involved at this time and the cells that do live or mature have iron deposits around them. My iron levels are high instead of being low like most anemic patients. The RBCs are abnormal in size and shape as well. I am 58 years young. I have been told I am young for this disease as it usually hits people in their late 60s or into their 70s. I’m sorry for your diagnosis. I read a little about MPN-U to know that it is rare. Mine is too but maybe not as rare as yours.

I was treated the first three months with Aranesp injections to see if it would help the stem cells to produce more red blood cells. It did not work! So I am now transfusion dependent and am still considered to be low risk with the disease. I get 2 units per month and can go approximately 3 1/2 – 4 1/2 weeks between transfusions. My iron levels continue to rise so they are watching them for overload, and then I will start on a medication to bring the iron level under control.

I just want you to know you are not alone and we are here to listen and help in whatever way we can. We are all various ages but pretty much are going through the same thing so I will help whoever I can in whatever way I can. God bless you as you go through this struggle and during your treatments and care.

[LeAnn Duke]

Hi Vishal, I’m glad to hear from you! I’m glad your spirits seem to be a bit higher than your last post. This is definitely a hard disease to understand. It can be so unpredictable at times even when we get the blood transfusions. I feel different each time I get blood. Some times it seems like I must have gotten super power blood because I feel really good. But this transfusion was different. I have felt more tired this past two weeks since the transfusion and find that I feel more heavy in my legs and arms than at other times.

Thank you for the information on the Asunra/Exjade. I haven’t know anyone else who has iron overload and who is on the medication. I will. Know what my Ferritin/iron levels are when I see the hemotologist in March. My hemotologist is about 1 hour and 45 min away so he and a local Dr close to me are working together so I can get my transfusions closer to home. I go to the local Dr and they check my blood and then I let the hemotologist know the level. The hemotologist calls the local Dr and they set things up at the local hospital for me. It sure helps not to have to drive so far since it is an all day thing to get only two units. But I am thankful that I can do this closer to home.

I have also read information about wheat grass for iron overload. I am interested in trying it especially since I am not yet taking the medication for high iron. I think it must be good for a body as I have heard of people using it for many years for good health. I believe it can be bought in capsule form and I plan on ordering some soon. I did read of one man who took it for quite some time and it did raise his hemoglobin levels for a good period of time, but then there were other difficulties, perhaps an illness that just helped the MDS to progress. I’m sorry I can’t remember exactly what happened to him, but he was more high risk and as the disease progressed he had other problems and passed away.

I don’t mean to sound negative but when bone marrow is involved and there is a genetic cause for failure, there may be some things that can help to make us feel better for a time, but I don’t think that chemo drugs are the answer to cure this particular type of disease. I believe they can slow the progression or perhaps help in the body utilizing new stem cells but the body also suffers in other ways from the harshness of chemo. I have hope that when I get to the stage where I need the transplant my twins stem cells are just like mine and will work just like mine did when they were healthy. I am frightened of the GVHD as a side effect of the transplant. Most people that end up having GVHD say it is definitely not as bad as how they felt with MDS. Of course I am low risk and they were all high risk and I haven’t suffered with it as they did. But the idea of those side effects which seem almost as debilitating still scare me. I am lucky that I don’t have a job outside of my work at home so I don’t have to get up early or produce for a boss. I can rest when I want and my husband is very understanding of this condition and helps me so much. I am glad that you have your parents to help you and hope your boss at works understands your fatigue and weakness when you are feeling bad.

As we communicate you will find that I am not a dreamer but a realist and like to face facts. I am also a Christian and have faith that there is a reason for everything that we face in this life and that God is in charge of life and death. That being said I pray that God will heal me if that is His will. I believe that can happen! So I pray in faith and according to His will. But I will also do my part and seek all the medical help I can and will look for natural aids as well. That is my part and I will leave God to do His part!

Thank you for staying in touch and I will look forward to hearing what you find out from your doctors and how you are doing. You are a very brave young man! Stay well and I hope you have a bountiful New Year!!

[LeAnn Duke]

Hi Diana,
My name is LeAnn and I am 58 and was diagnosed with MDS in June 2015. I have the type that is called refractory anemia with ringed sideroblasts. Basically my type is low risk at this point because only my RBCs are involved but my RBCs that are produced either don’t live long or they never mature, so therefore I am anemic. Also the RBCs that do live are abnormal in size and shape and have rings of iron deposits around them. So my iron level is high but my RBCs production is very low.

My dr tried Aranesp injections first to see if the medication would help my bone marrow to produce more RBCs , but it didn’t work. So now I just get transfusions once a month to help me to feel better. We will do that until the disease progresses. When I get to where I need more than one transfusions per month, then that means its progressing and we will begin to consider some light chemo drugs to help maintain it. I am a candidate for transplant and have a twin sister who will be my donor as long as she stays healthy of course.

Do you know which of your blood cells are involved?

It is great that you have been healthy up to this point because that helps in the staging of this syndrome from what I understand. I am still new to this and only know how I feel so I am interested in what other people are going through. I hope you have a happy New Year and get some positive news concerning transplant. Keep us informed.

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