[LeAnn Duke]

Hi Bob,
It does sound like her MDS is similar to mine if it is only the red blood cells involved. Mine is called refractory anemia with ringed sideroblasts. Basically that is that only the RBCs are involved and the white blood cells and platelets are normal as of now. The ringed sideroblasts from the way I understand it is that the RBCs that are living after they are produced are abnormally shaped and abnormally large and they have rings of iron deposits around them. My iron level is high and the level of blasts (cancer cells) is below 5% which is why I am in the low risk category.

May I ask again her age and why she is not a candidate for bone marrow transplant?

We will keep her in our prayers and let us know how her biopsy comes out! Hope you all have a happy New Year!

[LeAnn Duke]

Hi Sue, you asked whether I work outside the home. I do not! At this point I am so glad. I thought for a while last year that I would like to find something part time, but I didn’t really have the energy to pursue it. I had begun feeling really bad in the mornings and couldn’t see myself trying to get up and put energy into a job when I didn’t feel like doing anything around home. So it has worked out for the best. You mentioned walking. I wish I had the energy to exercise. But when my levels are low it’s all I can do to walk from the house to the mailbox without my heart pounding out of my chest.

I live in Tennessee in the US with my husband. We have 4 grown children and 7 grandchildren who are the joy of our lives even if we don’t get to see them all often. We live close to two of them and get to spend time with them.

You also mentioned weekly RBCs. Probably if you are low risk at this point they will only check you levels monthly if you can get your dr to do that. Especially if you don’t have an appointment till April. My RBCs start dropping after about two weeks from the date of the transfusion. My Dr told me that usually RBCs drop a half point a week. Sometimes mine have dropped a full point in a week. So it is definitely a good idea to get them or even your regular dr to do a finger stick which will check the RBCs but usually not the hematocrit, or let them draw the RBCs and hematocrit. Insurance has paid for my blood draws so that has been helpful.
I am trying to think of information that I haven’t shared so if you think of something please ask and if I don’t know the answer I’ll try to find out.

I will tell you this, that sometimes even after the transfusions your body can react differently. Most times it takes me almost a full week to feel back to “normal” if there is a normal!!! I don’t know exactly how long it takes for the blood levels to rise (kind of like the dr saying that they can drop a half a point per week) to the highest it’s going to go. As I said mine hasn’t gotten to 11 at any point. But I feel better after I get the blood, but it still takes time for all the symptoms to go away. And each transfusion and recovery is different I believe depending on how low the hemoglobin drops. So for the future when you start having transfusions be prepared for each time to be perhaps a little different. I wish I could be more specific but I also realize that each person is different and their symptoms vary in degree of severity. One woman who writes a blog said that when her hemoglobin drops to around 8 she has trouble adding and subtracting. She said she and her husband played Scrabble and she would find that she had difficulty adding up their scores. I don’t have that trouble but I do notice at times I struggle for the right words when I am talking or teaching my ladies Bible class. So everyone has things they struggle with that are different from the next person.

I hope this has helped a little. Let me know what your dr says.

[LeAnn Duke]

Hi Donna,
What is the stage of your MDS? Low risk, intermediate or high risk? I had never heard of the drug Jafiki until you mentioned it. I’m sorry you are having such problems. Do they seem to be related to the chemo or something else? I have basically been healthy all my life until now so I don’t know anything about the most recent chemo drugs. The only one I am familiar with is Revlimid because my brother in law took that for his multiple myeloma, before and after his transplant.

The fatigue is quite depressing when it hits because many times I can’t get off the couch. But I will say over the past few months I haven’t had it as bad as I did at first. I am still tired and struggle with walking very far without being short of breath and when my levels begin to fall as the transfusions wear off I have the heart palpitations but the general feeling of crud that I had early on is not something I experience all the time.

I understand about the transplant and there being no guarantees. It is a very difficult pill to swallow knowing that this is not curable and that the transplant is the only thing that can possibly give us any chance at survival. Do you have a sibling to donate or would you have to go through the transplant registry?

Stay in touch Donna and let me know how things are going and when your transplant will be. God bless and I hope you have a very Merry Christmas!

[LeAnn Duke]

Sue, if you don’t mind my asking, what is your hemoglobin running if you know? If your MDS is just affecting your RBCs right now, then yes blood transfusions help tremendously. My levels cand drop slow or fast as I am finding out. From the start my hemoglobin was at 7 and I have hD it drop as low as in the low 6’s and after the transfusions it will go up to about 10.6. I still have some tiredness and heavy feelings in my arms and legs throughout that time, but I feel better. It stays good for about 2 weeks and then I can feel the symptoms start to return and when it gets into the low 8’s and drops into the 7’s then the heart palpitations start and shortness of breath. I do my own housework and haven’t had to really ask for help with that. My husband is good to not require me to fix his supper every night so that helps because like you I am usually better in the mornings and by evening I am pretty tired even when the levels are up. The doctor says if they can keep the hemoglobin level between 10 & 11 with the transfusions and I only have to have one a month then we will stay in that holding pattern until things change. Is your doctor checking your hemoglobin levels every month? If you don’t go back until April then how do you know how your levels are holding? I worked it out with my GYN to let me come in when I feel like the levels are dropping and they either do a finger stick (which is not as accurate as a CBC, but can give you an idea of where you are and the finger stick is cheaper. Mine have varied from the time I need blood from 8 down to 6.8. The doctor says at this point their goal is for me to have a good quality of life and if I feel bad that is not quality so he will let me judge when I need blood given the way I feel even if the number is not as low as some would suggest it needs to be for a transfusion. Already since I was diagnosed, whoever sets these rules for deciding when a person gets blood has changed the hemoglobin level from a low 8 to 7. But the doctor said they treat MDS differently for which I am thankful! Stay in touch and let me know how things are going with you! Merry Christmas to you and yours!

[LeAnn Duke]

Good morning, Beth!
I hope today is good for you and that you have some luck in getting connected with your previous doctor. I know that is so frustrating and frightening.

I realize now that I didn’t qualify my information about kefir with the fact that anyone interested in it should always check with their doctor before trying anything other than what they have told you. Kefir is a yogurt like drink that has the same properties as yogurt but I do agree that people consult with their doctors about it.

I’m definitely not a specialist of any sort but only know that kefir has benefitted my husband and I and many more folks that we know that have intestinal troubles but I realize that GVHD is an animal of a different color for sure.

Praying that you have a successful and blessed day!

[LeAnn Duke]

Hi Sue,
I certainly understand the frustration about the information out there about MDS. Some say it is curable with a transplant and others say that it isn’t. Some call it cancer and others say it isn’t cancer. I guess ours is still a syndrome because we don’t have enough blasts to call it cancer. But the fact is it is progressive and it is not curable. A transplant will only give a few years from what I understand. And by a few, I mean 5-8, somewhere around there. I’m sorry you’ve had such a hard time with anger. I know everyone handles the shock in different ways. I guess for me it hasn’t been so much being angry. Mine has been more fear and dread more than anything else. I have always said I wouldn’t do chemo if I had cancer. But I never thought that I would have a blood cancer and need a bone marrow transplant either. My dreaded cancer was more like pancreatic or stage four breast cancer or liver cancer, something that most likely was not going to be curable and chemo would only prolong the agony of it. So when I heard this news, I was shocked somewhat at my peace of mind about having an incurable blood disorder. I was scared about the treatment rather than the disease. I actually had been pushing myself to do ordinary things and thought I was just getting old and therefore was more tired than usual. But I didn’t feel bad. I had dizzy spells (which I’ve had on and off my whole life), fatigue, heart palpitations, and shortness of breath after walking to the shed or mailbox. I thought, “old girl, you are getting out of shape and need some exercise.” But at the same time I didn’t have the energy to exercise. But I was shocked when the Dr told me he wanted to admit me that day and give me blood!! I agreed and wnet in and they started the blood and it didn’t bring my hemoglobin level up enough so the Dr ordered another unit and decided then to do the bone marrow biopsy which was conclusive for MDS.

So here I am 6 months later and I have tried the Aranesp injections and they didn’t work for me so we are just doing transfusions when I need them. That has worked out to be anywhere from every 3 1/2 weeks to 4 1/2 weeks. I only get two units each time of packed red blood cells. I have had high ferritin levels which was a signal to the Drs that something was not right so they are watching that. I feel comfortable with my dr and feel he is out for my best right now. We live about an hour and 45 minutes from his office and the hospital and he offered to work with my GYN to check my levels I feel like they’re dropping. He leaves it up to me if I am feeling particularly bad and the numbers might not show that the hemoglobin is super low as to whether I go in for blood. If I have gone 4 weeks I know it’s time to go in so he calls the GYN who practices at the hospital close to us and he arranges with the blood bank for me to have the transfusion. I feel very fortunate that they will work together and that the GYN is willing to help me out. That is not normally what he would do, so I am thankful to him for his assistance.

Please let me know if there is anything you ever want to talk through or gripe about. I am willing to listen and certainly understand!! I hope you have a very Merry Christmas and a blessed New Year!!

[LeAnn Duke]

Hi Beth, I figured you weren’t feeling too well. I am so sorry that you have had such a hard time. I know the acid indigestion is very hard to deal with. Now I am gonna take a chance here and mention something to you that we have used for years. You may think I’m crazy but here goes.

It is natural and is called Kefir. It is a natural probiotic made with milk by using Kefir grains. Have you ever heard of Kefir? You can buy Kefir in stores, the more Healthy store, the better. Some is sweetened or you can buy unsweetened. Or you can order the Kefir grains online. They are strange looking because they are not dry like oats or wheat grains. They are wet, whitish, almost opaque and look just a little like cauliflower. If you like buttermilk you would like kefir. You take the grains and put them in a quart of milk and put a paper towel with a rubber band on top to hold it on. Set the quart of milk on top of refrigerator and leave it for 24 hours. It is going to culture just like sour cream or cottage cheese cultures. In twenty four hours you can open the jar and wth a spoon remove the grains that have risen to the top and put them in a bit of milk to save for the next time you make it. Now the Kefir is ready to drink. I usually have at least half of a wide juice glass. I use sweetener in mine to make it taste better. I have had severe indigestion before and I can tell you it eased my stomach and the pain very quickly. Now I know your problems are because of the transplant but I truly believe in probiotics. OUr bodies do not produce the good bacteria after they have been destroyed by certain medications, especially antibiotics and so we have to put them back in. The kefir grains are not expensive and they stay “alive” as long as you keep them in milk. If you go a while and don’t use them, they kind of “fall asleep.” So we wake them up by starting another batch maybe in only a pint of milk and let it culture. Throw that batch out after removing the grains (don’t throw the grains away) and then put them in the quart jar of milk again and they are awake and ready to culture. This is very easy and it would help your gut by putting good bacteria in there that you might be lacking. I hope this is not too much to absorb and I understand you may not feel like having to look anything else up, but it might be something you look into when you feel a little better at some point.

I am staying stable right now. I had a tranfusion this past Wednesday and the plan to do it in Cookeville worked out well. Both Drs are willing to work together and help me. I should be good through the holidays. I’ll keep praying that you get some relief from your pain and that you can get everything worked out quickly with your Dr. I know you probably don’t feel much like celebrating but I hope you have a Merry Merry Christmas and a much better New Years!! I will stay in touch!!

[LeAnn Duke]

Bob, Can I ask what age your wife is and at what type she has when you find out. If she is over 70 a lot of Drs won’t do transplants. I have MDS and am low risk right now so I am transfusion dependent at this point. I have been getting 2 units once a month since June of this year. There is an injection called Aranesp/Erythropoietin that is supposed to help the bone marrow to produce more RBCs, but if her WBCs and platelets are already involved and she is considered intermediate or high risk they may choose to use another med that is a mild chemo called Vidaza that is also supposed to help the bone marrow to produce RBCs. Of course each doctor is different so I don’t know what her doctor will suggest. Much of this, from my limited knowledge, depends on the type of MDS and the stage and the percentage of blasts (cancer cells) there are present.
I have spoke with a woman whose husband was diagnosed at 72 and was not eligible in our area at the larger hospitals for a transplant. He underwent chemo for two years and the treatments neither helped him or hurt him. He remained about the same. They did their own research and decided to go to MD Anderson Cancer Center in Houston, TX (They are on the cutting edge of cancer research). They have doctors there who only deal with MDS. They went there because MD Anderson does transplants on patients older than 70. They put him on the list and while they waited for a donor, they asked him about a clinical trial chemo drug to see if he was interested. He and his wife discussed it and decided to accept the offer and they started him on it. He had one transfusion just after he started the trial drug and that’s the last one he’s had (he had already had 94 transfusions). That was 7 years ago and he is doing very well. He is in his 80’s and his wife said there were very few minor side effects to the chemo drug. His White blood cells and platelets are normal and his RBCs stay at about 12 which is just below normal for a male. They are both thrilled with the results and he is living his life and doing the things he wants to do. As I understand it he recently underwent back surgery is and doing well.

I don’t know if this will help, but it is some positive news for those who are not a candidate for a transplant because of their age. Will pray that all goes well for your wife and that you can find some answers that can help her to live a longer and more healthy life.

[LeAnn Duke]

Vishal, one other thing. My erythropoietin level was perfectly fine as well, but the one thing that EPO does is increase RBC in the bone marrow. Athletes take it to increase their performance levels. So it might be worth your while to talk to your Dr again and see if he will research it a little deeper or consider trying it on you to see if it could work to cause your bone marrow to produce more RBCs. As I said earlier we tried it for 3 months and then they did a blood test on the reticulocytes (baby blood cells) to see if there was an increase. If it is working there would be a considerable increase in the number of baby RBCs being produced and it might mean that you didn’t have to have as many transfusions which might help your iron overload. Another question for you – What is the name of the medicine you take for chelation? Do you notice any side effects from it?

[LeAnn Duke]

Vishal, this was definitely a shock for my husband and I to hear that MDS is not curable except for having a BMT that can extend our lives. Our. Holden are all grown and we have grandchildren that I would love to watch grow up. At this point I don’t know of anything for low risk MDS patients other than the transfusions. My doctor also says the transplant brings on too many risks because at this time only the red blood cells are affected. With chemo and BMT it will bring the other cells into problems before the disease affects them and the risk of chemo and the transplant is greater than than the risk of the disease. My brother in law had a bone marrow transplant for multiple myeloma and he said that basically they give you chemo to kill all the bad abnormal cells and that will affects everything, the WBC and platelets as well. The chemo takes your immune system down to practically nothing and then they bring you back with the transplant. I have had nurses that worked with transplant doctors that say it is really hard on the body. The disease will have to progress before any doctor would consider a transplant. It is definitely hard to go through, much harder than what we are facing right now. For me the blood helps me to feel better during the month. It is rather unpredictable and my doctor says the disease is an unstable one but I have seen that some months are better than others. Can you function ok at your job when you have the transfusions? How low does you hemoglobin usually drop before you go in for your units of blood? I have only had to have 2 units at a time and have been doing this since June 2015. So far my ferritin level is at 927 as of November. They will check me in March to see how high the iron is then.
Now I will mention this to you and let you perhaps do some research. I recently talked with an elderly woman who’s husband had a higher risk MDS. He was 72 when they diagnosed him. He went through two years of chemo and he didn’t get any better or any worse. Since the major hospital called Vanderbilt in Nashville, TN doesn’t do transplants on people older than 70 his only choice was was to continue chemo treatments. But they had been doing their own research as well and there is a hospital in Houston, Texas, called M.D. Anderson Cancer Center, who is on the cutting edge of research for different kinds of cancer and they have specialists who deal with MDS. This hospital does transplants after the age of 70 so this couple travelled there to have a consult to see if they would consider her husband. They searched for a donor for him and while they waited, the doctors suggested a clinical trial drug for him to try, while he waited for a donor. That was 7 years ago and he is still alive, in his 80’s and doing well. He had one transfusion when he got to Houston and they started him on the medication and he hasn’t had another transfusion since then. She said his side effects were very minimal, no nausea, vomiting or usual chemo side effects. He has a few minor skin issues but that is basically all he has trouble with.

I have written to a lady on this site named Beth Pilot who has MDS and hers is high risk as well. She has had the transplant and has some issues now with GVHD (Graft versus Host Disease). She would be able to tell you more about her experience. You can look at this site and find her name. I know she would be willing to answer any of your questions if she is feeling well enough. You might have to wait a bit for her to feel like responding but she is a year out from her transplant.

Do you have a sibling who is a match for you when transplant time comes? I have a twin sister who has sweetly offered to be my donor.

Vishal, I know it can be discouraging to plan for the future and then find out that plans may have to change because of health issues. And it isn’t easy when. You don’t feel like putting one. Foot in front of the other. But I urge you to try to stay positive and find out all you can about this syndrome. Even though there are days I don’t feel like doing anything I try to just take one day at a time. We don’t know how long our lives will be in even the best of circumstances so knowing I don’t have tomorrow promised, I am happy that I have today and try my best to be joyful and do meaningful things for today!! I can hope that while I am dealing with this syndrome or that by the time I need the transplant there might be a medication that can reverse this disease. I pray that God will give you the courage and physical strength you need to live the life you want for yourself and be able to sustain your health while research is being done. Feel free to contact me anytime. It definitely makes it easier to talk to someone who totally understand what you are going through and I do understand!!! Hope you have a good day tomorrow!

[LeAnn Duke]

Vishal has your doctor considered or recommended a drug called Aranesp or erythropoietin? It supposed to help the bone marrow to produce more red blood cells and for some it works well. I did not respond to it but you might ask about it. Here in the US it is very expensive so I don’t know what the cost would be in India. It sounds like we have about the same type of MDS. You are much younger than I am. I am sorry that you have to deal with this at such a young age. Stay in touch and let me know what your doctor says about the Aranesp injections. I took them every three weeks for three months but as I said they did not work for me.

[LeAnn Duke]

Hi Donna, I am hoping that the iron pills help you to get your iron levels up. I am seeing a hematologist/oncologist in Franklin TN assoiciated with Tennessee Oncology and so far I am very happy wiwth his care. He is a very compassionate man and cares deeply about his patients. The nurses at the hospital he works with all love him and speak so highly of him and his patient care. I haven’t heard one negative thing about him from anyone. He has showed his concern for us in that he has arranged to have me get my transfusions at our local hospital in Cookeville, TN so we don’t have to drive so far. He is my primary doctor but is working with a doctor here that will arrange for me to get the 2 units that I need every 4-5 weeks. That is such a big help to us. I found this hematologist because I have a Dr in Brentwood TN who takes care of my hormones and she had checked my iron level with one of the blood tests she does to check my hormone levels and found the low hemoglobin but high iron count. So even though we are a tad bit closer to Nashville and Vanderbilt Hospital where there are Drs associated with the Centers of Excellence I will stay where I am at present. I almost feel like I shouldn’t say this, but I am a little afraid of going to Vanderbilt because I might get lost in the cracks there. I donated a kidney to a friend years ago and would often take her to Vanderbilt to see the nephrologist. It all went well when we were both patients there but whenn she tried getting her medications from the pharmacy there was a huge lack of concern and lack of communication between Dr and Pharmacy. Sometimes the wait was 3 hours waiting on one prescription!! So I like the smaller group and the way things are done at this smaller hospital at this time. If/When I get to the transplant stage of course things will be different, because I will be going to a hospital in Nashville and seeing other actual transplant Drs. But for now I am happy and content with how they treat us and care for us. If you don’t mind my asking, according to the list of Centers of Excellence how far away are you from the closest dr?

[LeAnn Duke]

Pasha, my name is LeAnn and I was diagnosed with low risk MDS (RARS refractory anemia with ringed sideroblast) in June 2015. I am transfusion dependent and have been having transfusions approximately once a month (every 3 1/2 – 5 weeks). I am going this month into my 5th week and my levels have dropped rather slowly. My iron level was high to begin with and with the transfusions it continues to climb. The last number was 927 so the DR will keep an eye on it and has mentioned Exjade as the medication to keep my iron level in check.

My question is did taking Exjade help your red blood cells at all? How often are you having to have transfusions now?

All of this is very new to me! Thanks for any help you can offer!

[LeAnn Duke]

Hi Monna,
Thank you for sharing your experiences. I am very interested in what others are experiencing because I have yet to find anyone with exactly what I have. I am curious to hear what others are dealing with and to see if they have information that I haven’t found yet. I am sorry that you are having pain in your bones. Is that due to the MM or something new since the MDS diagnosis? Has your doctor told you what stage your MDS is at? Are your WBC involves? It sound as if your platelets may be involved since you are bruising so easily. Do you experience heart palpitations as well as the trouble breathing? When my levels drop I get the heavy heart beating, shortness of breath, and heaviness in my arms and legs and general fatigue. I haven’t had any other symptoms, but basically when the hemoglobin drops I don’t feel like doing anything. Of course the blood helps but the more transfusions I have the higher my iron level will climb and from what I read that can bring on achy joints as well as what I mentioned in the previous post. I guess in all of this I am learning patience to deal with not being able to do the things I have always enjoyed doing. This year I really don’t feel like even putting up our Christmas tree!! I will of course but it’s just harder this year.

I guess that Revlimid can work better on some than others kidn of like Aranesp does. It works for some and not at all for others. My sister told me the Drs at Moffitt in Tampa said my brother-in-law was the poster child for MM. He had the transplant using his own stem cells and left the hospital after 15 days and went to the close by apartment and left there after about 10 days and was able to go home. From what I hear that is almost unheard of. I know they told him there was really no cure for MM and that they could “put it to sleep” but eventually it would wake up. My Dr has also told me that there is no cure for MDS either and that they can treat some with the transfusions, injections, a drug called Vidaza that can tend to help produce more RBCs and then eventually the stem cell transplant. But he reminds me that is not necessarily a cure but more a treatment and eventually it comes back.

I have a twin sister who will be my donor when that time comes, of course if something else doesn’t happen in the meantime. I realize that we are only promised today and that tomorrow may not come, so I live one day at a time and pray that when that time comes that she is still healthy and can donate.

I am due for another transfusion but my hemoglobin level is dropping slower than what I have come to know as normal. I am about to change my mind and come to the conclusion there may not be a normal with MDS. My hemoglobin was only down to 8 today so I will probably wait till first of next week. I have never been 6 weeks before a transfusion since I was diagnosed in June. The norm was 3 1/2 to 4 weeks.

I haven’t had any problems with eating any particular foods at this point. I have had trouble sometimes having an appetite and finding anything that sounds good to eat. Certain foods just don’t have an appeal to me anymore. But I am staying the same weight so I guess I’m doing ok. Can eat pretty much what I want.

Don’t feel pressured to answer quickly. I know somedays I can’t think of what I want to say and don’t necessarily feel like typing. Best of luck and I will keep you in my prayers.
LeAnn

[LeAnn Duke]

Good morning Beth! Hope you are feeling better and have some of your GVHD issues under control. Just checking to see how you are feeling!

[Author]

Posts