[LeAnn Duke]

Thanks for the response! I am waiting to see when they will do the next bone marrow biopsy to check the cancer cells before checking into anything else. I appreciate your advice so much!

[LeAnn Duke]

I understand completely the fear of the unknown. I am 61 now and 58 when diagnosed. I am glad you all are so close to MD Anderson. They are a good hospital. Just a word of encouragement as you go along. Take something to read or something to do, because the schedules don’t always go as you might think. There are so many people as you have already seen that come to that place, that lab appointments and Drs appointments and any other tests done along the way can take forever. Also something important that most people don’t know is that if they want to do a bone marrow biopsy, your dad can ask for anesthesia before the biopsy. They will try to talk him out of it saying it isn’t all that painful, but if he doesn’t want to go through the pain, they will give him a bit of twilight anesthesia and do the biopsy while he sleeps. He won’t feel a thing and it is a whole lot less stressful. I had been warned and urged to not do one while awake because they are very painful. I don’t have a high pain tolerance as some do, so I insisted they put me to sleep. Each time they did one I had to make sure they knew I wanted anesthesia! This might help your dad a bit not to be stressed more than he needs to be. If I think of anything else, I’ll let you know! Any questions you are have I’ll try to help with.

[LeAnn Duke]

Hi Tereze, I have a high ferritin level due to MDS and also increased by multiple blood transfusions. I usually have 2 units of blood every couple of weeks which adds iron to my blood and my body has no way of getting rid of it. Last year before my stem cell transplant my ferritin level was at 4300 (yep that’s right, 4300). None of the Drs seemed to be concerned about it until I asked about my liver enzymes going through the roof. They they checked it. The Drs at MD Anderson weren’t too concerned about it, but my oncologist close to home decided to start me on a drug called Jadenu. Now here’s the kicker. Jadenu runs about $12,000.00 per month and if you have a good insurance with no limit on drugs you are a lucky girl. Jadenu is a pill that is easy to swallow and it gently (at least for me) pulls the iron off your body through your urine and your bowels. I have had no issue with taking this drug, though they do say there can be some severe side effects. The problem comes in being able to take this drug for longer than a couple of months. The company that makes it will help you by contacting foundations and groups that provide grants to help people afford this drug. But if you have a limit or a pharmacy coverage this might limit you on how many months you can get the meds. No one can afford $12,000.00 a month for a drug month after month. Sometimes your Dr might have samples they can give but not often. If you require chelation your Drs office will help you apply for assistance, but I just want to inform you of the difficulty in keeping it going, because for me, if I didn’t have the assistance my copay would still be $4,735.00. Still ridiculous! It shouldn’t be this way, but sadly it is.

Another option for chelation is an infusion that I did at home every night for 5 nights a week. It is a drug called desferoximine (or Desferol). It is cheaper this way. One wouldn’t think so with all the paraphernalia that comes with the infusion delivery. A pharmacy sent it too me every week, with a pump, the bag of medicine, the needles, alcohol wipes, gloves and everything I needed to use to hook up to this med. The needle is tiny and placed in the stomach, then taped in place. I would hook up at 9:00 pm and sleep with it and unhook at 7:00 am. It was a pain and inconvenient but it did the job and lowered my iron count to about 2000 so I could have the stem cell transplant last May. I will add here that the infusions can cause some pretty severe joint pain and high iron can as well. But I will be honest and say that the infusions brings on more joint pain than the high iron. I have not noticed the joint pain with the pill form chelation. Sadly my transplant has failed and i am dealing with the same problem again, going through the same applications for assistance, and most likely soon will have to start the infusions again, because the pill form is too expensive. I had hopes that the cost would go down, but instead it went up from last year from over $8,000.00 to $12,000.00 this year.

I know this might be discouraging and I’m so sorry, but this is factual and it is hard to get anyone to care that first we have a incurable disease and second that the drugs to treat the problems that come with it are too expensive to afford. But I know your gonna need information and there isn’t any use is soft soaping it! It is what it is!! Good luck and if you have any questions I’ll try to answer them for you.

[LeAnn Duke]

HI Debbie, I was diagnosed in 2015 with MDS and have been through the stem cell transplant which has failed and am now back to blood transfusions and chemo again. I have experienced back pain and leg and foot cramps, but I think it’s mostly due to the anemia. My hemoglobin with transfusions rarely gets above 11 and most times stays in the 10.5 range right after a transfusion and then begins to drop again getting down in the 7 range. I can’t let it get down more than that or I’m down! Mostly the back pain comes when I’ve been on my feet or doing household chores. Standing a lot hurts me as well. Any more than 10 to 15 minutes of standing makes my back ache and i need to sit. Tylenol seldom helps with that pain but my Dr gave me Tramadol which does help, but I try to take it at night when i need it. The leg and foot cramps hit when I started on the Vidaza which is the chemo they are using now. The contraindications do state that it can cause leg cramps and they told me to take magnesium for it. I am trying the Natural Calm powder right now and it is somewhat effective. Doesn’t always work though. I wish you good luck!

[LeAnn Duke]

Hi Cristy, I was diagnosed three years ago with MDS. I was low risk RARS and it went into RAEBS. I was blood transfusion dependent at first with the platelets and WBCs in the normal ranges but with the platelets continuing to drop slowly over a 6 month period. My husband and I decided to get a second and third opinion and we went to Cancer Treatment Centers of America in Zion, IL. and MD Anderson in Houston. I decided to work with Dr. Alvarado in the Leukemia center there on a clinical study using either Dacogen (Decitibine) or Vidaza (Azacitidine). Being that it was a random study the Dr didn’t choose the drug. My name was entered in and the program randomly chose the drug Dacogen. The study was to give the drug at a 60% dosage three days a month instead of 100% dosage for 5 days out of the month to see if they could get the same results. We live in Tennessee and this seemed to be a good option for us to try. We came to Houston every three months for treatment and the other two months my oncologist in Nashville worked with Dr. Alvarado and administered the same dosage. My cancer cells we’re at 6% and they stayed there for about 10 months. They they jumped to 14. Due to a bad sample of a bone marrow biopsy and some other issues at MD Anderson (nobody’s fault, just inconveniences) and the fact that we knew a stem cell transplant was imminent, we were forced to make a choice of moving to Houston for treatment or staying home for treatment. We chose of course to stay home. We contacted the transplant Dr and decided to move forward with the transplant plan. My younger brother was my donor, a 7 out of 10 match. They increased my dosage of Dacogen and gave me two months of treatment 5 days each month to lower the cancer cells. They got them back down to 6 and proceeded with he transplant. That was May 17, of last year. Sadly, the transplant has failed and I am again transfusion dependent and back on chemo, this time trying Vidaza. The Vidaza is at least holding my platelets and WBCs numbers at a decent level but the Dr wants to try what is called a Donor Lymphocyte Infusion. This is where they take some of the donors WBCs and infuse them into the body to see if they can reactivate the stem cells transplanted earlier. This can bring about a whole different set of problems. For me I have decided not to do this.

There are so many types and sub types of this disease so everyone is different in their bodies response to it. Some stay low risk for many years as the person whose father is a 21 yr survivor. That is extraordinary! I am so happy for him and his family. Also amazing results for JBC’s husband! This is wonderful for them. I pray your dad will have similar results. I am available anytime if you need anything. I am hopeful that there will be an immunotherapy drug soon that is successful in treating this disease across the board. God bless you and your dad!

[LeAnn Duke]

Hi Roger, I too have MDS RCMD intermediate 1 stage. I have progressed over the past year from RARS low risk. I am blood transfusion dependent and have been taking Decitibine infusions for the past 5 months with no improvements at this time. I am 59 and a female. I am with everyone else in that you should find a centers of excellence and see a specialist who deals with MDS. The only symptom you mentioned that I am not familiar with is the mouth sores. That’s a new one for me and I will be remembering that one. I don’t have the nose bleeds or significant bruising yet though my white blood cells and platelets get low due to the infusions I’m taking.

This is definitely nothing to play around with and I certainly cannot understand Dr’s who won’t send you to a specialist. Keep looking till you find a Dr who will listen. I don’t know where you live, but MD Anderson Cancer Center in Houston TX is a great place and they also have clinical trials to try if the FDA approved Medications don’t work. They would of course have to evaluate your particular type of MDS and your genetic tests as well. Good luck in your search for the best Dr.

[LeAnn Duke]

LeAnn here!! We chose to go to MD Anderson to see what their treatments for MDS were. When we got there they did the typical blood work and a bone marrow biopsy and then after the team of Dr’s reviewed the results they offered to put me on a research study using either Vidaza or Dacogen. As my info was put into the computer I was chosen to start on Dacogen. I started the infusions in May. The research study was for 6 months and instead of taking infusions for 5-7 days once a month, I take 3 day infusions that last an hour each. I have finished the 5th cycle with no side effects at all. No nausea or vomiting and although I started out using Zofran to prevent nausea, I found that I didn’t need it at all. I have not noticed any benefit yet. I have been transfusion dependent from the start and since starting the infusions I have had more frequent transfusions. I have also had to have platelets since I started the infusions where I didn’t have them before the treatments started. I was told also that with Dacogen that I should notice some improvements in 4-5 months. So far there have been none that I can see. My hemoglobin still drops throughout the month and I have 2 units of blood every two to three weeks. My type has changed from RARS low risk to RCMD intermediate 1 stage. As of the last bone marrow biopsy my blasts were still very low at only 6%. I think the plan will be to try the Dacogen to see if it will hold things where they are. My questions is that if I am needing more and more blood transfusions and even occasional platelets then is the Dacogen really helping things.

I have two oncologist and one says keep doing what we’re doing and wait and see. The other one says that he doesn’t see that that the Dacogen is working and thinks it might be time to talk to the transplant Dr. Any opinions?

[LeAnn Duke]

Hi Cindy, I am a Christian age 59 and I would be happy to talk with you. I too have MDS and realize that this is an incurable disease and that we don’t know what tomorrow will bring. Please feel free to contact me at my email: Brileighsmia@yahoo.com. I can certainly understand and my husband knows the feelings you are experiencing as well with the fear of losing someone you love. I am here for you!! LeAnn Duke

[LeAnn Duke]

Hi Tim, I am a 59 yr old female with MDS with no history of smoking, coming in contact with Benzene or any cancer or radiation or chemo treatments to cause this MDS. I have sought three different opinions and gotten each time a confirmed diagnosis of MDS, so I would highly recommend that you see a hematologist to have more specific tests done. From what each of my Dr’s have said a bone marrow biopsy is the only sure way they can tell if it’s MDS. They will also do genetic testing on your blood to check for abnormalities or for genetic changes in your cells. I have had this done three times. One piece of advice: If you opt for the hematologist and they do a bone marrow biopsy, you can ask them to put you to sleep with a twilight drug so that you feel nothing. I hear that the biopsy can bee relatively pain free at places that do biopsies all day long, but just because a Dr has done biopsies doesn’t mean he’s good at it!!! So insist they put you out if you don’t have a high pain tolerance level. My opinion is why allow them to hurt you if they don’t have to!! Good luck and I hope for the best for you!

[LeAnn Duke]

Hi Imshal, my name is LeAnn and I have MDS. I am 59. I was diagnosed in June of 2015. It is kind of rare that younger people get this disease. Usually as I’m sure you have already heard it happens to men over 65 and into their 70’s and 80’s. I’m sorry that you all are going through this and hope for the very best outcome for your father. I know that all this is scary and I encourage you all to see other Dr’s and get other opinions and make sure of the diagnosis. It never hurts to make sure of what you are dealing with!!

From everything I have experienced with this disease I can say that it is very unpredictable and inconsistent. One physicians assistant labeled MDS as a chameleon disease! It is changeable! There are different types and different stages. My type has changed since I was first diagnosed from refractory anemia with ringed sderoblasts and low risk (which basically means that only my red blood cells were involved and those cells are abnormal and have rings of iron around them. The red blood cells are also enlarged and abnormally shaped and die before they have a chance to mature which causes me to be severely anemic. This brings with it the shortness of breath and heart palpitations and just general fatigue. Over the past year my platelets began to drop slowly and my WBCs as well, so they have decided that I am at intermediate 1 stage (still considered low risk) but I am blood transfusion dependent and recently have begun having an occasional platelets transfusion. I started out getting blood once a month to bring my hemoglobin up and now receive blood alternately every two to three weeks.

We have sought three opinions. My local oncologist, Cancer Treatment Centers of America in Zion, Illinois, and MD Anderson in Houston Texas. We settled with MD Anderson in Houston because they offered for me to be in a 6 month research study using either Vidaza (azacitidine) or Dacogen (Decitibine), two drugs that are FDA approved for the treatment of MDS. MD Anderson is one of the top hospitals that deal with MDS so we wanted to see what they had that perhaps the other hospitals didn’t. The research study involved a study of each of the drugs and instead of the patient taking the drug by infusion for 5 or 7 days a month, they would give the same dose of the drug in three days by infusion. I was given the Dacogen (Decitibine) and I have finished my 5th cycle or 5th month. We will go back to Houston in a couple of weeks and I will have a bone marrow biopsy to look at the cells and see where we stand. Now, let me say, we did not have to go to Houston each month. My local oncologist was willing to work with the Dr at MD Anderson and give me the infusions at his office for the three days. We only have to go to Houston every three months which makes it much easier on us.

We don’t know if the treatments are working yet and this is the type of disease that we have to wait and see about.

I certainly don’t mean to scare you, but only help you realize there are people out there who are dealing with this disease and many who are doing well balancing their life and this disease. So if you have any questions and would like to email me, please feel free to do so! My email address is brileighsmia@yahoo.com.

[LeAnn Duke]

Sherry, thanks for responding. I certainly don’t know which is the way to go. The dr in Chicago said if I was his patient he would have already had me on Vidaza because I have always been transfusion dependent and he considers my stage at Intermediate 1. The Dr at MD Anderson in Houston says that I am still relatively low risk and mentioned Vidaza but they also work a lot with clinical trials and mix drugs to get better effects. But you must go to Houston to receive the clinical trial drugs. I certainly understand the reason behind that, but it just doesn’t seem feasible due to the expense. I live in Tennessee so travel is a huge consideration. Money, time away from my husband, who cannot always go with me and I don’t want to have to travel by myself. The other thing is that I want my treating physician to be close in the event of something going wrong. All of this is new to me and I am uncertain as to the best way to go. I feel good about my oncologist who is only an hour and a half away, and the local hospital where I get my transfusions (and hopefully will be able to start the Vidaza treatments there as well, are getting used to seeing my face and knowing the disease. We primarily went to the other places for opinions anyway.

My brother in law was on Revlimid for about 4 years for Multiple Myeloma. He recently had a Melanoma on his arm so they stopped the Revlimid and are now watching his markers. So all these drugs give me questions and I know so little about them. Do you take a pill or is the treatment an infusion? Do you know why your Dr didn’t like the idea of Vidaza and why he chose Revlimid over it? I am not crazy about taking the infusions, as they are 7 days a week. Did the Revlimid cause you any nausea or vomiting and do you have to take anti nausea meds often?

It seems that I never get a clear answer about these things from any doctor. They kind of brush those questions off as if they aren’t really important. Like bone marrow biopsies: They will tell you that this procedure is pretty much painless and really don’t want to put you under for the procedure. But I am pretty sure none of those people who do the procedure has ever had one done!!! Nor have they ever taken these drugs so when I am concerned about nausea, they say it is a light chemo and most people don’t have any trouble with it, but when I read about people who take it that is the first thing I read about. One Dr said the stem cell transplant was an easy thing. It takes less time to get the stem cells than it does to get blood. But I know he left out what they do to you to get you ready for the transplant. My brother in law already has had one and I was there to help take care of him after it was over. But my sister shared what he went through so I know there is nothing easy about it.

Sorry to go on and on, but I appreciate your response and will see what is in store for me as I go along. Take care!!

[LeAnn Duke]

Hi Sherry, my name is LeAnn and I started out with RARS. I was diagnosed in June of 2015 and have tried the Erythropoetin injections and they didn’t work. I’ve been transfusion dependent since September (basically was dependent since June 2015). My blasts are at 4%. I started out with my RBCs being involved and now the platelets are dropping steadily. My husband and I have been to Cancer Treatment Centers of America in Chicago and just got back from MD Anderson. The diagnosis is confirmed but since the platelets are involved I am now RCMD. The The Dr in Chicago thinks I should have already been on Vidaza, and we go back in two weeks to MD Anderson to hear the results of the bone marrow biopsy and cytogenetics tests they did. My oncologist has spoken to the Chicago dr and is in agreement that Vidaza is the way to go. Any opinions? Have you started any treatments at this time?

[LeAnn Duke]

I will most likely be starting Vidaza in a few weeks. I am wondering if Doctors will give an anti-nausea med so that I can take it at home. Is this nausea the kind that is hard to get on top of if you only take the meds when you first feel the nausea or is it mild and can be knocked out taking the med only when you feel it coming on? Does anyone have any experience with taking Vidaza long term? My Drs have said that they have patients who have responded well to this med and have been taking it for 2 years and one who had been on it for 4 years.

I have to admit that I am concerned about starting this med! Scared is more like it!

[LeAnn Duke]

Beth, I have been worried about you. I’ve been wondering how things have been going for you. I hope you are doing ok.

[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!

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