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LeAnn DukeParticipant
Hi Mike,
I have MDS and am considered low risk. My symptoms sound much like yours. I am 58 and had a finger stick last year Oct 2014 that showed my hemoglobin was low and they assumed I had low iron. So the Nurse Practitioner put me on iron and suggested I get my regular MD to check it and keep up with it. So I did and when she ran a iron test along with other blood work she called and said she was baffled because my iron was high, but I was very anemic. She sent me on to a hemotologist and he put me in the hospital for a transfusion that day. Hemoglobin was at 7. The next day I underwent a bone marrow biopsy and they diagnosed the MDS. I have refractory anemia with ringed sideroblasts. Red blood cells only are involved at this time with rings of iron around the cells that are being produced. Apparently not enough of them are living though, thus the anemia. Mr Dr suggested Aranesp/Erythropoietin injections which we did for a litte over three months and they did not work. for now I am transfusion dependent (having 1 every 3 1/2 -5 weeks). For some reason it is rather unpredictable and some months it is every 1/2 weeks and other times I feel good and my levels hold up to 4-5 weeks. This time it has been almost 5 weeks. I will go this week as I can tell by the blood pounding in my head that my hemoglobin level is dropping.I hope you have good luck in finding a treatment that will work for you. Do you know what stage you are at or what type of MDS you have?
LeAnn DukeParticipantIvy,
My name is LeAnn and I have low risk MDS. Not sure if the Drs terms would be the same or not. my MDS is low risk because for the time being my red blood cells are involved and the white blood cells and platelets are not involved. I also have a low percentage of cancer cells(blasts) in my blood (which every one already has) and as long as my blasts stay low, it isn’t necessarily called a cancer but more of a syndrome (that’s my interpretation of it as I understand my Dr.) I have what is called Refractory Anemia with Ringed sideroblasts. So that is Red blood cells that are not producing as they should or dying before they reach maturity. They are not carrying as much oxygen to my organs as I need so I have rapid heart beat or as I like to call it, hard heart beating, because when my hemoglobin is low and with exertion I feel like I have run a marathon when all I did was walk across the room. That’s the genreal description for the refractory anemia. The ringed sideroblasts means that I have iron deposits around what few RBCs that do live and they are abnormally shaped. In general there isn’t enough of the RBCs and they aren’t living long enough to keep my hemoglobin count where it needs to be. I have had dizzy spells and feel lightheaded and ezperience general fatigue and just don’t feel like doing anything. I was diagnosed in June of 2015 and the Dr. started me on Aranesp/Erythropoietin injections. WE did those injections for a little over three months, one shot every three weeks. He told me when we started that they might work, but they sadly did not. Now I am tranfusion dependent and only have to have transfusions every 3 1/2 – 5 weeks. For MDS according to my dr if we can keep the transfusions to one per month I will stay in the low risk category. He says he has patients who have been doing transfusions for years and have done well. Since I have the ringed sideroblasts that has made my iron levels higher than normal. So with the transfusions I will soon develop what they call iron overload and have to start on a medicine that will pull the excess iron off my body because too much iron can be hard on the heart and liver.My Dr. reminds me often that MDS is an unstable disease, which I have taken to mean that it can change at anytime. I do know that it is unpredictable. I feel different after every transfusion. Not in big ways but the symptoms come and go differently. In general I feel much better after the transfusion and my energy levels are much better and some days I feel like there is nothing at all wrong with me. So the benefits of the blood are great! My husband and I have recently taken a different look at the word unstable and thought that perhaps unstable can also be taken in a good way because, for instance, this month I have gone for 5 weeks before needing to go back for blood. My hemoglobin level usually does not come up beyond 10.4 or 10.6 with blood. So this time it only dropped to 9.2 in 3 weeks. Normally it drops into the low 8s or into the high 7s. I can usually tell when it is dropping because of my heart pounding or hearing my heart beat in my head and ears when I am just sitting still.
If you know what stage your dad has been diagnosed at I would be interested in hearing. I have not yet found anyone who has exactly my same diagnosis so some of what i have written my not apply to your dad. But if so and you feel like writing I will be happy to correspond. You can read all sorts of things on the internet that can scare you and sometimes trying to find others out there with the exact same thing can be almost impossible.
I recommend finding a good hematologist/oncologist if he doesn’t already have one. This is not all that common of a syndrome from what I understand and there are several different stages and types of it. I wish you all well in your journey and if I can be of any assistance please let me know!
LeAnn DukeParticipantMonna, I am 58 W/female. I haven’t had MM but I have MDS. and am trnsfusion dependent as of now. My doctor tried me on the Aranesp/Erythropoietin injections to see if they would encourage new Red blood cell production but they didn’t work. My doctor recently made the suggestion of Revlimid in the event that my WBC and platelets become involved. Right now I am low risk with just my RBCs involved. My stage right now is called refractory anemiia with ringed sideroblasts. Basically that means that the ones that are prodoced are not living to maturity. and the ones that do live are abnormal in size and shape and have rings of iron around them. My iron level is high and with transfusions will get higher and I will then have to do what is called iron chelation to pull the excess iron off my body. The reason I am responding is that my dr recently suggested Revlimid as a treatment for my type of MDS. It isn’t the normal treatment but he said it has helped in some situations, Does your Dr. think the Revlimid has contributed to your newly condition. I have heard that Revlimid can bring about secondary cancers and also that MDS can begin with those who have already had chemo or radiation. So there may not be a difinitive answer.
The reason I ask that is my brother-in-law has MM and had a stem cell transplant in Dec. 2011 and it has been in remission now for 4 years. He had it done in Tampa at Moffitt Cancer Center. I don’t know of their work with MDS or whether they have many who go there. I know Pensacola is a long way from Tamp, but I know that he and my sister speak very highly of that hospital.
I hope you get some swift answers from your doctor and that they can help with the best treatment out there. I am here if you need someone to talk to!!
LeAnn DukeParticipantHi Beth,
I hope you are feeling better today! I must apologize for burdening you with so many numbers and asking questions that were not that important. I have asked and had answered those questions and basically I am not to worry. One low WBC is not necessarily a change. They fluctuate so I shouldn’t be concerned. The ferritin level doesn’t change that fast and we will address that in March when I go back. My GYN who agreed to check my hemog/hemat has agreed to arrange for me to get blood when I need it here in Cookeville. So all is well. I am 4 weeks in from the last transfusion and level is still at 8.6 so I can go at least another week before I have to go in.God bless you to feel back to normal soon and get your intestinal troubles under control!
LeAnn
LeAnn DukeParticipantHi Donna,
My name is LeAnn and I was diagnosed with MDS in June 2015. I am 58 and have refractory anemia with ringed sideroblasts. Basically that means that at this point I am low risk and so far up until now, my red blood cells have been involved and I go monthly for blood transfusions. The ringed sideroblast means that my red blood cells are encircled with iron deposit which make my iron level high but I am still severely anemic because my stem cells do not produce enough red blood cells and what is produced is dying before they can mature. Also there are abnormalities in the RBC’s that are produced. My most recent blood levels showed my white blood cells have fallen below normal. I have noticed that they have fluctuated over the past 6 months but this is the first time they have fallen below what is considered “normal.” My Dr. tried me on Aranesp for about three months and it didn’t change anything. So now I am basically transfusion dependent and we wait for the disease to progress to where i need more than one transfusion per month and then we will be looking closer at a stem cell transplant.I wish I knew something about Procrit but sadly I do not. Do you know what type of MDS you have? I wish you luck and encourage you to find an MDS specialist that will make this a big deal because it is a very big deal!!! I know the people here at MDS Foundation can guide you to great doctors all over the country so wherever you are they can help you find someone who knows what they are doing.
I am here if you just need to talk or share with someone who knows some of what you are going through!!
LeAnn DukeParticipantHi Beth,
I know we all have a little stubborn in us!!! Haha! But maybe that helps the fighting spirit too!! I sure hope the med help and I guess lesson learned wither order earlier or go a different route to get it so you don’t have to do without! I know my husband has some stomach issues and talks about a burning and hurting or aching and only rarely do I have a stomach ache. But his is probably due to an ulcer because of his stress level. But I feel lucky I don’t have that kind of issue and feel for those who do!I got some blood results today and saw that my WBC’s have begun to drop. The level was down to 3.6 and has actually beenn fluctuating for the past few months but this is the first time it has gotten below normal. The lymphocytes are normal, but the Neutrophils and Granulocytes are now below normal. Any real significance to those changes that you can tell me? The WBC level had been 5.6 in June when I was diagnosed and went to 9.2 at the end of the month, then from there it has been in the 5’s and 6’s. Last month it showed 5.4 and this time was down to 3.6. The Dr. didn’t mention the WBC or the Ferritin level and I don’t know if they just didn’t have all the levels back until this week from the lab or if they are not concerning to him at this time. I know all this might be more info than you want but I post it to see if anyone else who reads it might have any input. I don’t know much about any of this and what is too low or what can affect my immune system or what is too high and dangerous to my other organs. I realize you can read anything on the internet so what might be considered the standard level to some Drs. might not be standard to others.
My sister reminded me today about the drug I mentioned – Revlimid. She said that it is also know to cause secondary cancers. My brother-in-law has taken it as a maintenance drug for almost 4 years now and just today had a melanoma removed from his arm, so he can no longer take it. I am wondering if that would something to be concerned about with me taking it to stabalize my MDS. I will definitely ask the Dr. But there have been times when he mentioned a medicine like Vidaza and I said, “A chemo drug” and he said it’s not exactly a chemo med, but the next time he mentioned it he said it was a mild chemo drug. So I am interested in what he will say about Revlimid and it’s possible side effects. The last thing I want is to get Melanoma or lymphoma! Again anyone out there with any experience with this kind of treatment I would appreciate hearing if it was effective in slowing down or stabalizing the MDS.
I have had some decent days but can tell things are going south and haven’t felt great today. I hope that you get your meds soon and get out of the recliner and back on your feet and back in your bed at night!!! Sleep well!!
LeAnn DukeParticipantHi Beth,
Had an appointment with the oncologist/hematologist yesterday and my hemoglobin had only dropped to 9.2 in three and a half weeks!! I was a little surprised but happy nonetheless!! He asked me if I wanted to see a collegue of his that is a little closer to us so we don’t have to drive so far, but I am happy with him and hear so many good things about him that I really want to stick with him. So to help us he is going to see if he can arrange for me to get my transfusions in Cookeville (about 18 min away) instead of having to drive to Franklin which is on the south side of Nashville (about an hour and 45 minutes away minus traffic)! That is another good thing. Also since I am in a holding pattern right now, I don’t have to go back to see him for 3 months unless something comes up. I will continue to let my gynecologist stick me to check my levels and when I feel bad enough and my numbers are low enough then I call and they will set up the transfusion at the hospital that is close to us!! Very happy about that. I will most likely go in next week for blood. But happy that it didn’t drop as fast as last month!He is going to keep a check on my ferritin level with is going up. The last time I saw the iron level it was at 466 and it is now at 927. So I don’t know exactly how fast it rises but I think it will be in the next few months that I begin taking the med for iron chelation. He also mentioned that when things begin to change we might consider the drug Revlimid to try to see if it stabalizes the condition. My WBC are still normal but the granulocytes band count has dropped. I don’t know exactly what that means at this point, but I can see differences in the counts as the months go by. I get my levels on the navigating cancer site and that of course is the next day after my appointment and I don’t necessarily want to call and ask what every little change means. I looked up the high iron and what is normal before chelation and one site said when the level gets to 1000 – 1500 ng is a usual number to begin chelation. I’m not that far away from that number!
Anyway, just a short update and feel good about what the Dr. wants to do to help for our convenience sake.
Hope you are finally feeling better!!
LeAnn DukeParticipantHi Beth,
I will let you know how tomorrow goes. I am almost thinking that if my levels are low enough tomorrow that I might just let them put me in and go ahead with the transfusion. First reason is that I won’t get to feeling terrible the lower the numbers goes, and second reason is that it is a ways away and it will save us a trip first of the week. I have held up pretty good this time and feel like the hemoglobin level is around 8 right now. When it gets into the mid to low 7’s my heart begins to pound hard with little exertion and I haven’t had that yet. I can feel it sometimes but not alot so I can tell it hasn’t dropped too low.I have always been the type to call if there is something different or new. I try not to be a pest to the Dr, but I also won’t let anything go that doesn’t seem right. I feel like my stress level is lower now than at first and I can read my body better. I can tell by how much ice I eat in a day too as to how low the hemoglobin level is dropping. Funny how it seems to make me feel better just to suck on ice! But it does!!
I also wanted to comment on what you said the other day about feeling fortunate about this kind of cancer. I have thoughtthe same thing – that if I had to have a type of cancer I am glad it is this. This at this point is manageable and not painful. I may not have the energy that I want or stamina to do certain things for any length of time, but I am not in pain and having other problems as of yet. Maybe I won’t, but if I do, I am sure more aware of others who are in worse condition than I am and it has made me want to pray for others now more than I ever did before, because I have some very small idea of the fear they feel and the uncertainty they feel dealing with something life threatening.
I hope that you begin to feel better with the new dosage of Prednisone. I know anyone who has taken it before says it usually works wonders if you can get your dosage right.
i’m also hoping that the information that the site administrator sent will help you if you need to go that route!! I plan on writing that number down and putting it with my files just in case at a later date I need some help. I wonder if anyone out there knows how fast MDS progresses. I know my Dr. said he has several patients who have been doing the transfusions for years and are holding well. All I do know for certain is he says this is an unstable disease so I guess it can change anytime.
Will keep praying that you make some improvements and start to feel better.
LeAnn DukeParticipantHi Beth, I was wondering how you were doing.Actually I was getting a little worried that the GVHD was more serious and maybe you were in the hospital or something!! But not to worry!! I knew there must be something going on that you didn’t eiter feel good or didn’t have the opportunity to post. Glad you found the problem with not eating with the medicine and that is doing better!!
I am really so sorry about your insurance problems!! I wish I knew something to help! I guess we have ObamaCare to thank for all of these changes, huh! It is a mess and I know many who have been dropped or who can no longer afford the cost of monthly premiums. We have a high deductible and I am a bit concerned about that going to hit us again in 2016, but at least they aren’t raising our monthly premium this year, which I am very shocked at seeing that they paid out a pretty penny for me this year!
I go see my Dr on Thursday and get my levels checked. I can feel the level dropping this week. Tomorrow will be the third week since the last transfusion so am hoping I can wait till MOnday or Tuesday before I go in for the next one. But I won’t wait if it is low or if I feel bad. I have felt pretty good this time around though. My husband jokes that i must have gotten some football players blood or a guys blood that’s pumped on steroids. HA!
The baby is great and very laid back. She is also perfect! Six pounds twelve ounces and was 20 inches long. 15 hours labor for the second baby was unexpectedly long but mom did great. She did it with no pain meds and it was a water birth! I am in awe of her!! Very proud!
I hope things work out with your finding a new medical team in a new facility! I know this has to be worrisome and frightening! Will be praying that everything works out smoothly!!
LeAnn DukeParticipantJust checking Beth to see if you received my latest post? I don’t see it on here and wondered if it was out there floating somewhere! Please let me know because I had a few questions, if I can remember them now!!
LeAnn DukeParticipantHi Beth!! I am currently at the birthing center with my son and daughter-in-law waiting for the baby to arrive.
I thought I would post and comment on your latest post too. I look forward to your posts as well and am so happy that you decided to share your experiences with me. I wondered if your liver enzymes showed the problem!! It is said in the Bible that life is in the blood! Isn’t that for sure. It sure gives us all knids of warning of problems or potential problems!! The more I think about it the more amazed I am!
You mentioned that the Aranesp might be working if I had to have fewer transfusions, but sadly that isn’t the case. They stopped the Aranesp about a month ago. They did the reticulocyte blood test and it was actually within normal range after I had been on the shots for 3 months. There was no icrease in those babies, so my hemotologist said there wasn’t really any need to continue the shots. He gave it a go knowing it might not work. So we think it is the bone marrow not producing enough due to failure and not due to a lack of vit. B-12 or iron. Blood levels are normal for the vitamins and my iron level is high. From my understanding it is just a matter of time before the disease progresses. That is the unknown part I guess. I don’t know how long or when and will there be any warning signs? There sure weren’t for the low RBCs. At least that I knew of at first. I just thought I was getting old and when my heart would thud after a small amount of effort, I just thought I was terribly out of shape and needed to exercise!! But I was too tired to exercise!!!! I have never had to have more than one transfusion per month so I know that the Dr. is happy with that at this point and says that we will do that as long as we can and I guess when it gets the point when I have to have 2 a month we will have a different discussion!
I know somewhat of the feeling about my responses being all over the place. I am typing along and get one sentence typed and then have to go back and read your response to know what I intended to say. I know I don’t have it but I have heard alot about chemo brain!! Most people who have had chemo mention having it to some degree. My husband already gets a kick out of my forgetfulness. My mother and my oldest brother died from Alzheimer’s and he thought I might be geting early onset until he found out that anemia can cause some minor memory problems. Mine are nothing serious but since we recenly lost my brother at 59 it was something he considered!! But I told him, I wasn’t anymore forgetful than he was! Ha! I know it’s not Alzheimer’s though, not worried about that! I do notice though when my levels are low that I have a little trouble coming up with my words! And knowing the diagnosis has helped me not to be afraid of it when I can’t come up with the right word!
I confess having my low moments once in a while as I think about the upcoming transplant (whether it will be months or years away) and wonder if the prognosis after will make it worth going through all of everything!! How long do stem cell transplants last for MDS patients? I had always said that if I had cancer I wouldn’t want to do chemo and go through all the horrific things I had always heard about it. But with this diagnosis and the idea of the one treatment of chemo is not as overwhelming as the idea of countless ongoing treatments. So I think I can handle it!! And talking with you has helped even more!!
The GVHD sounds like it has caused more pain than almost anything else. If I have already said it, forgive the repeat, but I am hoping with a twin donor I won’t have that issue. I had read earlier about the GVHD but had forgotten about it until you mentioned it. I knew transplant recipients with the allogeneic donors could have that issue but don’t really know how prevalent it is. How long does it take for the prednisone to knock that out? And will this possibly be an ongoing thing where the stem cells think of your body as foreign and keep trying to attack it? It is actually just the opposite of a organ transplant where the body can reject the organ, but with this it sounds like the stem cells are rejecting the body! (If I understood what I read).
Well it looks like the labor will soon progress because they broke her water. I will stop and look forward to asking more questions later!! Have a great rest of the day!
LeAnn DukeParticipantWell as you can see I didn’t get a chance to respond yesterday. By the time we stopped yesterday I was too tired to do much. I am feeling good from the blood transfusion this time around though! My levels had dropped from 8 on the Thursday when I had them checked to 7.2 on Tuesday when I went in for the 2 units. So it was on its way down, but not as low as it had gotten the month before, so it didn’t take as long for it to kick in and make me feel better!! So I have had 2 really good days where I feel almost normal. There is still always a little heavy heart beat when I exert, but for the most part I don’t poop out as fast as when it is down. We have been trying for two years to get an antique secretary refinished and finally Saturday we got it moved into the house from the garage! It has been a big challenge what with the weather being either too damp or too cold or too hot or me just not feeling like messing with it. We stripped off some ugly green paint with a faux finish and I must admit I had murderous thoughts toward the folks that painted it. It is a beautiful mahoghany piece and though we are novices at refinishing (did the best we could) it is still far prettier with the paint off and restained and polyed!
I hope this GvHD doesn’t last too long and the steroids help soon. I read up on that a little and it sounds like it is pretty common with allogeneic donors. I am hoping since my twin will be my donor that I won’t have that issue. Do you know how long this problem typically lasts? What kind of symptoms did you have to let you know something was going on? Jaundice or blood levels wacky or something else?
You mentioned the hair thing!! I used to have real long hair, thick, thick hair when I was young, but have had it cut short for many years now. It just was too difficult for me to handle it. It was either pull it back or let it hang and it wsa always too thick for the then “current” fasteners to hold it on top of my head! So I cut it, then let it grow just to about my shoulders and permed where it was super easy to take care of. But my hormones were all out of whack and perms stopped holding and I jsut couldn’t deal with straight hair, so off it came! I have had short hair now for about 23-24 yrs. Different styles, different colors, permed, straight, just about anything you can imagine. But I cut it myself and I usually trim it when it starts bugging me, so it doesn’t change much. The only way I haven’t tried is bald!!! Hahaha!!! Maybe I’m due for a change! Yes, that might be just what I need! I will try not to be too particular when it’s time for someone to shave my head!! I do realize that there is so to take in and when you are going through it, hair is the least of your worries. I will tell you that even now sometimes it’s all I can do just to hold the hair dryer long enough to blow it dry. So as I progress with this I am sure it will get worse and I will probably go back to one of the shorter cuts I used to wear so I don’t have to mess with it. My twin (Linda) wears hers shorter and we used to have identical hair styles so I could easly go back to that and mousse it, style it, and go! Then when it’s time for it to all go, it won’t be too bad!
I knew about the stay after the transplant. My brother-in-law was at Moffitt Cancer Center in Tampa for his transplant for multiple myeloma. I went down to help my sister care for him afterward. Basically I went down to help her keep the apartment they were in clean and disinfected and to cook when she was tired. They really did well with his recovery time and he did so well with his own stem cells that he got to come home about 3 weeks before others who had a non-related donor would. He was lucky! He is still doing ok and his numbers/levels are holding very well! December will be 4 years since his transplant! I guess I will go to either Centennial or Vanderbilt Hospital in Nashville when it comes time for mine. I know a lady who also had multiple myeloma who has the same Dr. I will go to for the transplant. I have met him already and there is a team there so I’m not sure which one will actually do it. She loves him and said he was an awesome Dr. I really have a good hematologist too! All the nurses at the hospital love him and have nothing but good things to say about him! I will definitely research things though. The thing with my stage right now is that I am low risk and am not seeing anyone related to the transplant side of things yet. My hematologist is monitoring everything and watching all my levels and seeing me once a month right now.
Thank you for the two sites you mentioned to contact for information too!! I will check with them and see if they can send me some information and study it so I cna be prepared for when things begin to change.
I know you started with both your RBCs and WBCs involved so you moved at a faster pace than I am moving. I guess for me right now that’s a good thing. I do have the concern that if I stay at this stage and am transfusion dependent for several years, then my twin will age out of being able to be a donor. They told me 65 yrs old was the limit for a donor. I have an older sister who is already 64 and a younger brother who is 50 almost 51, so if LInda ages out, then my brother has offered to do whatever I need. I am blessed to have them in my life and appreciate so much their love for me and willingness to be a donor. I have a brother who is a yr younger and he has never even called when he found out I was sick and has never mentioned being I donor. I think he doesn’t like me that much!!!
Anyway, I don’t worry too much, because I realize that I am not promised tomorrow and something else could take my life before the MDS does. God is in control and will provide what I need when I need it!! I truly believe that!!
By the way, no baby yet! Today is her due date so we are in the wings waiting!! Have a great night!!!
LeAnn DukeParticipantI am so mad right now!!! I started to answer and stopped to look something up and lost the whole reply!!! UGH!! I will finish when I am not as tired and can think of what I want to say. I will tell yu though that my husband appreciates you sharing your experience with us as much as I do! He says whenever I read it to him how much it helps him too!!! Will try to respond tomorrow when my brain is fresh!! Have a good night!
LeAnn DukeParticipantHi Beth,
I’m so glad you responded so quickly. I really do appreciate the laymen’s terms because I am new to this, just 7 months in. So I don’t know all the medical terms and don’t understand some of them. I am typing this today as I sit in the hospital bed for my 7th transfusion. My levels weren’t as low as they have been before but we are expecting our 7th grandchild any day now and I wanted to be there for her delivery!!!You have covered several things in this letter that I have wondered about. I dreaded the chemo and losing my hair more than anything else. Call me vain but I am used to my hair even when it doesn’t do what I want it to. It is still mine!!!! I told my husband that i would be looking for a wig or something cute! My sister crochets so I might be hitting her up for some cute hats. That’s a great idea! I will keep her busy!!
I have also read and heard the horror stories about the sick, sick feeling that chemo brings but I know that the anti nausea meds are much different and more available than they used to be so I am ready, willing, and very much able to demand them when I want them!!!!!
Please don’t be afraid of scaring me more than I already am. I am a realist and have that “need to know” type of personality. I want to be prepared even though I realize that it may be some time before I actually have to take that step. I don’t want to get ahead of myself or my doctor but I want (need) to know what to expect!
My husband and I are working to learn and understand as much as we can and we are really glad that my sister knows some of the things to expect when the time comes for the transplant.
I do remember my sister telling me that her husband who had multiple myeloma had to take a med that boosted his stem cells and that caused some minor bone pain. She was curious what she would have to undergo when the time comes for her to donate. But i convinced her that it wasn’t quite time enough to ask the doctors because the actual transplant doctors are associates with my hematologist/oncologist but not in the same building or hospital. So I don’t even gt to ask all of my questions either. She lives in Florida and I live in Tennessee so it won’t be hard to do all this but will be best to wait a little till things begin to change.
I have realized that life as I have known it has changed and I won’t have the same energy as I once had. I will try to have as much joy and as many good days right now, because I know once this disease begins to change there might not be very many good days.
Do you mind telling me if I’m not being too nosy, what kind of issues “after transplant” are you dealing with? I read many clinical studies from different cancer centers and they talk about patients with MDS (different types) and they talk about the prognosis of those patients but they don’t talk about the previous medical problems of these patients. I have been very fortunate to be very healthy before this. NO heart, blood pressure problems. I am not diabetic. I was a kidney donor 13 years ago and take only a supplement for thyroid and my hormones.
I also had a little trouble with having no appetite and my taste buds changing somewhat. I think that alot of that was due too the Aranesp. That has kind of changed now. At first I couldn’t stand the sight, smell, taste or even the feel of chicken. But that has gotten a little better. At least I can cook it for my husband now without thinking of throwing up. I also had a real problem with sweets at first too. Just had trouble finding anything that sounded appetizing at all. Beef and barbeque pork always was a hit and shrimp tasted good. I haven’t lost any weight and still have to watch my weight so I don’t regain what I lost about 3-4 years ago.
You mentioned that you have memory issues now. I sometimes struggle to find my words but mostly when my levels are low. That is another key to knowing when I need to get some blood. Did you ever have to deal with iron overload? That is another concern my doctor has with being transfusion dependent. If I begin to need blood twice a month then we will have to watch my ferritin level because it is already high. Did you have high iron too or was it normal? What do your levels run now and how often do you go to the doctor for check ups?
I hope you are having a good day today. I look forward to hearing from you whenever you feel like it. I certainly understand the lack of energy or interest in talking or communicating sometimes!!! Sometimes just to text is too much effort!!! lol!!!
LeAnn DukeParticipantHi Beth,
Thank you so much for responding. I had given up hope that there was anyone out there that cared enough to respond and give any information to us newbies!! I am at this point not taking the Aranesp because it didn’t work to raise my red blood cells. Could you tell me if your WBC or platelets were involved in your MDS or is it just your RBCs?For now the Dr has decided that since I am still considered low risk that I am a good candidate for transfusions for the time being. I am due for one this coming week and at present am only having to do one per month. He feels that starting vidaza would involve the WBCs and platelets needlessly. Because this is an unstable disease it is my understanding that things can change at any time. When they do then we will look at Vidaza as the next step.
I really appreciate your detail about how the vidaza is administered and that there are two shots each time. I try not to stress over things but do want to know exactly what I am facing and up against!! The more I know the easier it is for me to deal with it.
Let me ask you: You mention the pain involved. Are you talking about before or after the transplant? Or during the transplant? What kind of pain and where? I knew about the anti-nausea meds and that they encourage you to take them which I have no problem with. I will definitely be asking for them!! I don’t like the idea of being sick or in pain!! Call me a baby, but I am definitely a sissy when it comes to nausea and pain!!!
Can you also tell me what your doctor said the vidaza is supposed to do? How long is a normal time to stay on the vidaza and what does “at bay” mean before the transplant?
I realize thata I may be several years away from a transplant, but then again if this disease changes with no notice, I need to be prepared.
How are you doing now that you have had the transplant? How long do they say the transplant will last if they know? My dr has consistently told me there is no cure for MDS and the transplant will help to extend my life but not save it. I realize that we are not promised tomorrow and that I could die from something else before the MDS takes my life. I don’t want to die, but if I am not necessarily afraid of dying. But if I can fight this disease, then I will do it as well informed as possible.
Thanks Beth for taking the time to answer some of my questions. I hope they are not “all over the place”. I asked them as they came to me!! God bless you!
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