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Allan RomriellParticipant
Ellen,
I have low risk form of MDS on watch and wait, diagnosed june 2017. I do have fatigue issues, although fairly mild I believe, based on what I hear from others. I always feel a little tired and get winded very easily if I exert myself. Usually after some exertion if I sit for a while I return to normal(at least normal since MDS) and I can go on about my business. I have noticed that I do go in cycles where I get exhausted much easier for a few days and then it goes back to my normal, so I don’t know if there are times my red blood cells are in a down turn and then return? not sure. I have been feeling better with less fatigue the last couple of months and when I went in for blood work last week all my counts were at their highest level they have been all year so hemoglobin levels etc has a direct effect on fatigue I think. I don’t know if this helps you or not, one thing seems to be certain with this disease, it effects everyone differently and its tough to find a “usual” for everyone. I wish you all the best,
AllanAllan RomriellParticipantTam, no I am not on any MDS treatment. I haven’t really changed anything other than I am able to do more work around the place because I haven’t been as fatigued. I started noticing I was less tired over the last couple of months and hoped it meant my counts were increasing and that is what was happening. It is interesting because all my counts had been on a slow decrease all year, I am checked every 3 months and they had all been just a little lower every checkup until this one and they are higher now than at any checkup all year. Not sure what the deal is but happy for the gift none the less.
Allan RomriellParticipantSo sorry for your loss Doug, your mother was only a year older than me… may you eventually find some comfort and peace……
Allan RomriellParticipantDebbie,
I had started to notice more leg pain and being more tired in the early spring of 2017. In late april I went in for a routine physical and when they did blood work my platelets were 75000 which alerted my doctor and he sent me to the hematologist which led to BMB and diagnosis in june of 2017. By july or august platelets were back to low normal and have stayed in that range mostly since then. I know some of my pain is related to activity but I still feel the MDS contributes. I have blood drawn every 3 months and see my Hemo guy at each blood draw. I feel like my counts probably bounce around some in between, it seems I have a few days that I am really tired then I bounce back to almost a normal feeling, hard to explain really. I hope we all continue stay on a fairly stable course, good luck.Allan RomriellParticipantDebbie,
I was diagnosed 6/17 MDS-RS low risk. My hemoglobin and platelets were right about where yours are in July although my platelets have been any where from 75 to 152 since diagnosis. Hemoglobin has ranged from 11 to 12 but seems to be slowly dropping from the high of 12 last October. One thing I had noticed even before I was diagnosed, (mine was discovered in routine physical blood work) is an increase in joint and bone pain. Mine is worse in my hips and legs. I do spend quite a few hours each day on my feet and I know that and my age (65) contribute but I feel the MDS is contributing as well. My oncologist said using Aleve, Tylenol or similar pain reliever was ok as needed. I use Aleve type and it doesn’t seem to make any difference in my numbers. I have gone without between blood count checks and with and it doesn’t seem to have any effect. I have also tried CBD oil and it helps, I usually use it on the effected area at bedtime and it seems to help me sleep better. I have never seen bone or joint pain listed as a symptom of MDS anywhere that has info on the disease but in reading patient stories on blogs and this site I have noticed it is mentioned quite a bit so I feel it is part of living with MDS. I hope this helps, I hope you continue to do as well as you are right now. All the best.
AllanAllan RomriellParticipantRose,
Check online or with a local cancer center to see if there is an MDS support group near you, they might have some ideas or resources. I would also check for them in Florida near where you live. I do not yet have the issues your husband does and therefore am not much help in how he will progress. Hopefully the chemo will help in rebuilding his blood counts so he can get some strength back. I live in Idaho so am not much help, I wish you the best.
AllanAllan RomriellParticipantEllen,
I also have MDS-RS diagnosed in JUne of 2017. So far no treatment has been necessary and I hope to continue that for some time. Fatigue and joint and muscle pain, legs and hips mostly are my most common symptoms but I have been able to live life pretty much the same so far, a little slower than before but mostly normal. I wish you the best, this is a great site to get answers and support.
A.Allan RomriellParticipantBrian,
What you describe does not sound mild to me either. I have low risk and in over 1 year have only had blood work every 3 months and my numbers are fairly steady, hemoglobin in the 11’s platelets have leveled off in the 130’s white count mostly normal. I hope they get you some answers at your next appt. and can get you stabilized. Wishing you the best.
A.Allan RomriellParticipantThanks for the update Newt. If it has concluded trials and is working on being approved that is good news for all of us with primarily anemia. I understand it was targeted for those with the RS type MDS as well which is what I have. I am not in need of transfusions now but I know the day will come, as MDS will not go away but just get worse. I hope they do have it out next year.
Allan RomriellParticipantDon’t know everyones situation so I will elaborate on my own. My regular doc referred me to a hematologist after blood work showed my platelets were at 75,000 or aprox 1/2 of low normal for a at the time 64 year old man. The hemo doc sent me for a BMB because he couldn’t see any other reason for my low numbers. The BMB came back with a result of MDS with Ringed Sideroblasts or RS. That is a definite MDS classification from all I have read but it is also classified as low risk because the progression is generally slow and chance of moving to leukemia is 5% or less. I have only been on this journey for a little over a year and my last check(yesterday) had platelets at 131,000 RBC 3.57 WBC 5.17 Hemoglobin 11.1. Some of these numbers are better than a year ago some are lower but fairly stable over the last 14 months or so. My HEMO/Oncologist is happy with the stability and feels I could stay treatment free for many months to possibly a few years. So from all indications I have a low risk case of MDS but I still have MDS and its not curable and will eventually get worse. I know others have been diagnosed with pre MDS or low risk MDS but seem to not fit the profile quite right. I think there is not enough research or info on this disease as yet and not all doctors are as up to speed as perhaps we need them to be. I think if you feel less than confident with your diagnosis or doctor you need to get a second or 3rd opinion. No one will care as much about your health and situation as you do, so be valiant in asking questions and checking things for yourself. I wish you all and any one else out there fighting this fight the best. It is scary to hear the term cancer in any form and MDS is cancer of the bone marrow however slow or fast it may progress. All the best to all.
AllanAllan RomriellParticipantBetsy, I am 65 and have had low risk Mrs for a year now so not the same situation as your father, but there are some similarities. No one would know I have a terminal disease to look at me either and in fact only family and close friends know. I can tell how much weaker I am than a year ago But I can still function and do most of what I need to do. I hope that the cancer center can help your dad, there are many more options than a few yrs ago and he may be one who responds well to treatment. I wish you all the best, there is always hope
Allan RomriellParticipantNorman,
I see University of Arizona is a MDS center also, I know that’s a hundred miles from you though. The closest center to me is 400 miles in Salt Lake City. So far I have been treated by my local oncologist who has been excellent. I have a low risk form called RARS and haven’t need treatment of any kind yet, diagnosed june 2017. Not sure what I will do when it comes to treatment time, as I said any MDS Center is 4-500 miles away. I hope something works out for you, good luck.Allan RomriellParticipantGood Advise Michael, hope things continue good for you….
Allan RomriellParticipantDonna, I know exactly what you mean with the dark cloud, or as I say I am a walking time bomb but I have no idea if I will go off and if so how big the explosion will be. All I can do is try to live my life the best possible but I still know it can change on a dime. As to your pre mds I don’t know what to tell you either. I think my numbers are all better than yours but I do have MDS with ringed sideroblasts which are a specific mds type so that is how they know I definitely have it. Maybe just the way some doctors evaluate it verses others? Don’t know. I wish you the best and hope you don’t need treatment any time soon.
Allan RomriellParticipantThanks Beth, Glad to hear you are still doing well. I hope my luck will hold as well. My doc thinks I could go up to 5 years before needing any treatment, so that would be great. I know things can change in a hurry but so far my numbers have held pretty steady for the past year so……. my only symptom continues to be mainly fatigue and shortness of breath when exerting myself. I just have to adjust my plans to allow more time to do any projects. Take care, hope you have a great summer.
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