my father has low grade mds what should i do?

[LeAnn Duke]

Hello again Vishal!! I was beginning to be worried about you!! I am glad to see your post!! I am so sorry that you have been facing these difficult times. I will get right to answering your questions. First of all yes, I will add you to my friends on Facebook. It might be better to communicate there so we can stay in better contact. If I don’t get on this site I forget my username and password too and have to go look it up. I have an address book that I keep usernames and passwords in because I am notorious for making one up and then forgetting. And if my husband ever makes one up I know I’ll never remember it. His are rather silly and I don’t understand them. He never remembers them either!! Lol!!

I have realized with MDS that most of the symptoms are the same but different in their intensity and frequency. It seems they are just totally unpredictable. Most mornings when I wake up, I feel terrible and don’t want t get out of bed. But I do anyway! I drake around the house for a couple hours and just don’t feel good without being able to put a name to how I feel. Right now, I am in the 3rd week from the last transfusion. So I am having the beating in my ears almost like far away carpenters pounding on something. I don’t know if you have ever heard of the brother and sister duo The Carpenters from the 1970’s. I know you weren’t born yet, and yes I am old!! Haha!! But I tell my husband often “well, the carpenters are in my head again!’ He always asks me “the singers or the ones pounding nails?” Most times it is when I sleep that this happens and that is when it is most frustrating because it wakes me up from a sound restful sleep and then I can’t go back to sleep. Thankfully I can say I didn’t hear the pounding!! I haven’t begun having the heart palpitation or shortness of breath at this point. It seems when I do I know then that the good level is in the low 8’s and then I know to go get the finger stick. Then that gives me the number I need to know if I should wait or go in.

You asked me how often I go in for transfusions. I go at least every 4-5 weeks. I am only getting one transfusion with 2 units of packed red blood cells per month. I try not to let my blood counts go below 7. The reason is that I feel so bad when they drop that low that I can’t hardly go!! (I will add here that my husband can tell when my levels are dropping too and he urges me to go get them checked. Sometimes he urges me to go in before the levels are low enough because he hates to see me feeling so bad). The hard thing for me is that before I get blood I know where the level of hemoglobin is, but after the blood I don’t because the hospital doesn’t check the level before I leave so I can see how far up it went. I wish I had my own meter so I could check it myself (and I am checking into that) and then I would have a starting point. After the first transfusion back in June of last year, it one went to 10.4. And the doctor hoped eventually we could keep the levels between 10-11, but I don’t believe it has ever gotten to 11. My hematologist is about an hour and a half away, so whenI start to feel the symptoms, fatigue, blood beating in my ears I usually wait till the beginning of the 4th week (if I can) then I go to a Dr closer to me and they have agreed to help me keep an eye on the levels and they do a finger prick to test my level. If it is above 8 I try to wait. But my hematologist has always told me that my quality of life is more important than the numbers!!! That is key Vishal!! It is so important!! He wants me to feel the best I can feel!! So I watch the numbers and usually go another time as I feel the symptoms worsen and when the levels get to about 8 or below, then I schedule the transfusion.

I would like to fuss a little as a mother and encourage you not to let you levels get as low as you did this last time. First of all it is extremely hard on your heart!!! I will be honest and say that your latest level scared me!! I have read of people dying of heart related issues when they let it get so low. Am I correct that basically you are getting a transfusion twice a month? I know every body is different and can some can take the symptoms longer than others. I read of one woman who couldn’t let her levels get below 8 or she couldn’t think right and her fatigue was through the roof. Others can let it go a little lower before they start to feel so terrible they have to do something. So if your levels get lower than 7 you may not feel as bad as I do when my levels are above 7. BUT in any case the 3-4 levels are way too low (dangerously low) and I would caution you to have them checked before you get to that point. I also know the lower the hemoglobin goes, the harder it is to come back to a “normal” point. I know! You are probably asking what is normal anymore? I ask the same question!!! I have about equal days right now of feeling bad or good. Some months it is more bad than good, but my body is trying to recuperate from the low levels and by the time I start to feel better, I have a about a week, maybe a week and a half, of feeling good, then it starts to drop again. But all in all it takes me about 4 weeks to get to the place where I need to go in for blood. I know I am one of the luckier ones and I thank God that I am doing as well as I am for now. My doctor says this is an unstable disease so I don’t know when things might change.

I do believe our lifestyles have a great deal to do with how we feel. I try to stay as positive as I can. Vishal, I know I told you before that I am a Christian. That in itself gives me hope. I know God is ever present in my life and I have seen His blessings over and over again I my lowly life. I am just a regular person too. We live in a modest, but nice home. My husband is a minister so we are not rich people. WE are middle class as well, not poor, not wealthy. My husband and I chose a long time ago for me not to work outside the home, (I have in the past, but not for sometime) so that I could help him in his work and be available when he travelled so that I could go with him. He also teaches at a Bible College here in Tennessee and I can be available to help him in the functions there as well. So we have a rather busy life and I enjoy what we do very much. Being a Christian I recognize that the Bible teaches that we have only this one life to live and we have the obligation to live according to the way God would have us to live. This life is short!! I was married before and I lost my first husband in an auto accident in 1989. He was only 32! He left this life quickly and thankfully about as pain free as anyone could. He was hit head on by a big dump truck type truck carrying huge barrels of highway paint. They say he never knew what hit him. I am grateful for that! I tell you this because I know that I have today to live. I realize that I could lose my life just as he did, in a car accident, or I could die from some other means before this disease takes my life. So I am happy today although I may not feel the greatest, I realize that today is a blessing and I will do my best to live today to the fullest. I know it’s easy to get depressed. I feel that way often. I’m tired of feeling bad and want the old days back where I could enjoy being around people without them asking “how are you feeling” all the time. But then I realize they love me and really want to know and that makes me feel good. I am sorry that friends in your life have stopped coming to visit you as they did at the first. I know that everyone has their jobs and families. When they hear that someone is sick they rally around at first and then it seems they forget. That is undeniably sad!! But I have seen it too. Many ask at first and now they don’t ask anymore. For me, I don’t often look sick! My color is rarely pale (only when my blood gets on the lower side). So they see me looking the same, doing the same things and for the most part acting the same way and they assume I am doing better. I don’t go about with a sad countenance so they automatically assume that I am doing better. They can’t remember that this is a progressive disease and that it probably won’t get better. We can always pray to God that He will help someone find a cure for this, but until that happens it is a disease that will someday take my life unless I die from something else first! I don’t want you to think that I don’t want to live. I do!! Very much!! I love my husband and my family and I want to be around for my grandchildren and watch them grow up. But I guess what I’m trying to say is that even at the young age of 58 I am not afraid to die because heaven awaits me and when I think of what heaven has to offer, it is so much better than what this world can give me. I tell you all of this to say that even when the people in our lives seem to let us down, God will never let us down!! And that is what keeps me going and trying to do what I can here to help myself with making my health as good as it can be but when it is over it’s okay! Because what ever God’s plan has been for my life, I know that He knows the number of my days and He knows when I will leave this life and my soul is in His hands. That is my peace, my conviction, my belief, and my faith in the one who gave me life to begin with.

It is sometimes difficult for me because I have a daughter from my fist marriage that won’t have anything to do with us. She keeps her children from seeing us as well. She is easily persuaded and she is married to man who doesn’t like us nor respect us and he is good at turning her to think it is the other way around. He tells her all the time that we don’t like him and don’t respect him so we should not be allowed to see their children because we might influence them in a wrong way. Silly I know, but still very real and very mean! We have offered/tried countless times to sit down and discuss the situation but he refuses to do so. Basically he is afraid that we will bring some truths out that he prefers to remain hidden and she might see him for what he is. He has manipulated her for many years and pulled her away from her entire family and any friends she had before she met him. I share this with you as well because when you mention friends that don’t come around a lot I understand. My daughter has called me one time since I became sick and I have seen her once in the last 8 months. They didn’t come for the holidays and we miss our granddaughter and grandson so much and we know they miss us as well. People let you down and that’s a hard thing to accept! But I can’t let that rule my life and throw me into the pit of despair. I can’t let the stress that causes be the center of my world. I just try to keep going on and be around the people that I know truly care for me and as much as it hurts to lose contact with my own flesh and blood, I have to realize that there must be a purpose for this burden as well. You mentioned what God’s purpose for you is with allowing you to have this disease? Maybe it was for you and I to meet through this avenue of communication. Maybe it is to strengthen both of us through these dark times. Maybe it is to help you realize that you can do more than you ever thought possible!! I have realized during my life that bearing burdens has helped me grow in ways that I never would have had I not had them. I might have become a selfish, greedy, spoiled person who expected everything to go my way had I not had the burdens and sorrows in my life. Who knows what great things you can accomplish because of this burden? You sound to me that you are a very driven person and very intelligent. I also know that when I am feeling low I try to think of someone who is in worse shape than I am. I try to call and talk to them realizing that others might have forgetten them as well. I always feel better after talking to them. There is something about sharing ourselves with others and showing compassion on others that makes us feel better even when we are feeling bad!!

I wanted to mention the wheatgrass too. We ordered some seeds and my husband (his name is Kerry) wants to start growing them for fresh juicing. I am kind of a sissy, Vishal, when it comes to things that don’t taste good so I am hoping I can drink the juice. I know I can add other fruits into it to make it more palatable, so we are going to try it! I haven’t had my ferritin level checked yet since November. It was at 972 then. I know that’s not considerably high at this point but it has risen since June from 490. So if I take the wheat grass powder (Kerry makes me capsules and I am taking an equivalent of 1200 mg per day) I will see if I can tell any difference in my ferritin level when I go back to the hematologist in March. I will have had 3 transfusions since my last appointment when I go in March and if the level has stayed the same or is a little lower then I’ll know it has helped. I am anxious to see what they are!!

Vishal I continue to pray for you and your health. I’ll continue to pray thatyour spirits stay high as well. I do believe that if you don’t allow your levels to drop so low, the you won’t have to have so many units of blood and you will feel somewhat better as well. I wish I knew more about this disease, but the one thing I do know is that it strikes everyone differently. Even though you are low risk, you have to have more transfusions than I do. I’m a pretty logical person but sometimes with MDS logic doesn’t work very well. It will do what it will do to our bodies and we are innocent bystanders!!!

I am going to go to your Facebook page and request to be a friend. You are in my thoughts and prayers and please message me anytime. I will be happy to see your picture and then I know wht you look like and it makes it easier to communicate!! I pray God’s richest blessings on you and your family and am thankful to Him for us meeting here!

[NANCY Galbabreath]

To all regarding low risk MDS

First, there is no such thing as low risk MDS – as most of us know. Low risk simply means the chances of turning into Leukemia quickly is low. Of course, Leukemia is more difficult to treat and is very aggressive. Anyone with MDS is in a risk situation, and you are right that there are very few treatments. Eventually researchers will know how to treat individual cases, but it will take years to get hard answers. Because people are now living longer, this disease is just starting to be acknowledged and explored – seems like the last 10 years or so. However MD Anderson and Vanderbilt along with several other MDS Centers of Excellence are beginning trials to help those with lower risk MDS. There are a few clinical trials going on. Also, some success has been discovered with BMT where the patient is not given massive doses of chemo, but rather less toxic doses that make recovery easier and seem to work in some cases. My reading indicates this is preferred for older people but I’m sure they will continue to explore for lower risk patients. However, please be realistic that there is only one cure, and that depends so much on luck – with a donor, other health issues and age.

My husband has low risk MDS extremely similar to what LeAnn described – affects only RBCs. He was diagnosed in November 2014 but was on watch and wait until his RBC started to go down November of 2017. He just started in a clinical trial at Vanderbilt with Decitabine pills. Decitabine is usually given to Intermediate/High Risk MDS patients with pretty good success for partial remission. Even though only one of his counts is presently affected, this chemo will lower all of them for a while, which means more RBC transfusions and risk of infections and more iron overload. He is one of the very few with low risk MDS patients to be accepted and it is a risk, but he does not want to live dependent on RBC transfusions and iron overload (which is almost as bad as MDS!) and may want to be considered for a BMT sooner rather than later due to age (63). So we will see what happens after the 90 day period. If the decitabine does work, it usually helps for two to three years, although many people have been symptom free for as long as 7-10 years. Hopefully, year by year they will find other options to treat this mysterious disease – – so time is important!

EThe one thing I would HIGLY recommend to all of you is that you get to an MDS Center OF EXCELLENCE (there are many) for evaluation and second opinion. Believe me, this is way over your local oncologist/hemotologists head!

[Clint Holland]

Hello to all. I am writing about the term “Low Risk MDS” and Nancy Galbabreat in her post states what I believe to be a common sense answer i.e. there is no such thing as low-risk MDS etc…. The point of my email is to try and bed this term down. I for one was told I had low-risk MDS. Does it mean I have MDS or does it infer that you could be on the road to MDS but you do not have it now? I think it means just that i.e. you do not have MDS now.

But my Haematologist told me I had low risk MDS, without explaining that this did not actually mean I had MDS and gave me literature on MDS and said we would wait and watch for a few months. So I am off thinking I have MDS, but not at the high end. So this description of one having low-risk MDS, are we all agreeing it means it is NOT having MDS – or am I and others confused…or is the Doctor just not being clear enough and as Shakespeare or someone else said, that is the question.

[Owen Maguire]

Gerry
When I was diagnosed with low risk Trilineage MDS in 2012 I specificaly asked my Hemotologist/Oncologist what this meant. His immediate reply was that my Hgl , WBC and Platelets were below normal limits and Blasts were 4% which were slightly above normal.At that time I was low risk to proceed to Leukemia. I was on Watch and Wait until 2015 when my Hg took a dive and I began self injecting Epotine Alfa (Eprex) 40,000 units once a week. This has brought the Hg up to a consistent mid 125 ( Ref – 137-180 ) I was reclassified as Low Moderate MDS. In Jan 2017 my WBC and Platelets fell and in April I commenced Vidaza 7 on and 21 off. My last blood results in early July 2018 were Hg 124, Platelets 121 ( Ref 150-400) and WBC 2.2 (Ref 4.0-11.0) My Blasts which had been 6% a year previously are now 3%. My classification remains at low moderate MDS. Each month when I have my appointment with my Oncologist the Nurses tell me I am doing great on Vidaza. The Oncologist says he is Cautiously Optimistic and I have never needed a transfusion. From my perspective if MDS is stated in the clasification you have MDS and Low, Moderate and High relates to the likelihood of progressing to full Leukemia.

[Allan Romriell]

Don’t know everyones situation so I will elaborate on my own. My regular doc referred me to a hematologist after blood work showed my platelets were at 75,000 or aprox 1/2 of low normal for a at the time 64 year old man. The hemo doc sent me for a BMB because he couldn’t see any other reason for my low numbers. The BMB came back with a result of MDS with Ringed Sideroblasts or RS. That is a definite MDS classification from all I have read but it is also classified as low risk because the progression is generally slow and chance of moving to leukemia is 5% or less. I have only been on this journey for a little over a year and my last check(yesterday) had platelets at 131,000 RBC 3.57 WBC 5.17 Hemoglobin 11.1. Some of these numbers are better than a year ago some are lower but fairly stable over the last 14 months or so. My HEMO/Oncologist is happy with the stability and feels I could stay treatment free for many months to possibly a few years. So from all indications I have a low risk case of MDS but I still have MDS and its not curable and will eventually get worse. I know others have been diagnosed with pre MDS or low risk MDS but seem to not fit the profile quite right. I think there is not enough research or info on this disease as yet and not all doctors are as up to speed as perhaps we need them to be. I think if you feel less than confident with your diagnosis or doctor you need to get a second or 3rd opinion. No one will care as much about your health and situation as you do, so be valiant in asking questions and checking things for yourself. I wish you all and any one else out there fighting this fight the best. It is scary to hear the term cancer in any form and MDS is cancer of the bone marrow however slow or fast it may progress. All the best to all.
Allan

[Laurence Herman]

Hallo LeAnn,
Ive been reading your first post Dec.13 2015 hope you are still well
i have exactly the same condition as you Low Risk MDS Refractory Anemia with Ringed sideroblasts.
I have up till now not needed any Blood Transfusions but my Hb count was down to 8,6 at the last check up
so possibly my Dr will start this treatment. Apart from feeling tired, being pale and having my Puls sounding in my ears up till now i have needed no treatment
I was wanting to ask how you are now a few years after your first posts and are you still getting blood
every 4 -5 weeks has your MDS developed or has it remained the same.
Hope to hear from you soon
Laurence

[arethamorce]

Hello, I was diagnosed to have severe depression 4 years ago and tried almost everything out there that “could” help. The only medication that worked best for me is medical cannabis. I perfectly understand that it’s not legal everywhere. At first, I was doubtful so I started doing my own research and read articles about marijuana. I found out that each marijuana strain has different uses for different diseases. Like this strain https://www.gyo.green/dna-genetics-24k-gold-dna-24k-f.html This one is very effective when it comes to stress and anxiety. Just sharing, have a nice day to all.

[Peter Buss]

Vishal, I am living in Australia and have MDS, I am much older than you but we are both dealing with the same issue. I will send you a friend request to your facebook page, and perhaps easier to chat there. We can discuss current world cup of cricket in which I think our two countries may play off in the final.
Kind regards
Peter Buss

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