[Allan Romriell]

Ann,
I know that bone and joint pain is not listed as a symptom of MDS but I know my joints, and bones, hips and leg bones mostly, hurt more now than they did before my MDS started. My hips do hurt in the morning particularly after sitting for a while and then try to get up. I have low risk MDSRS variation and my oncologist allows me to take 2 Aleve a day to help with pain and sleep better. It does help for now. My platelets have been holding in the 120-140 range so far. White cells are ok, hemoglobin in the 11’s and red count slightly low. I was diagnosed in June of 2017 and have been basically stable since. I wish you the best, its a difficult disease as its so different for everyone.
Allan

[Allan Romriell]

Kari,I know they never list joint pain as a symptom of MDS but a lot of people with it complain about it. I am almost 2 years since diagnosis and my joint pain seems to be getting worse. Like Bob I know age and old injuries factor in(I am 66) but it just seems to be more prevalent than before I was diagnosed. I haven’t noticed any specific food angle and I do eat a lot of crackers and breads, and chocolate(I am trying to cut way back on sugars however) but doesn’t seem to effect it. I deal with it with either Tylenol or Aleve and joint relief type creams. My hematologist is aware of my pain med use and is ok with it so I will keep doing what I am doing for now. The fatigue and shortness of breath are definite factors for me as well. I have to take more frequent breaks when doing yard work etc, and some stuff I just don’t have the stamina for anymore. Other than that life is fairly normal, my blood counts have been fairly stable and my Dr is quite pleased with the slow progress of the disease and feels I could still go a few more years before any treatment is needed. I hope he is right. I wish you all the best in your struggle with MDS, hopefully yours will remain stable for years to come.

Al

• This reply was modified 5 years ago by Allan Romriell.

[Allan Romriell]

Rose,
Thank you for that, I know it must have been hard. It was hard for me to read it as I know one day my wife will be in your shoes and I can’t do anything to stop it from happening. I hope you have loved ones to help you through this difficult time. I will keep you and yours in my thoughts and prayers. Thank you again for posting your experience. Words don’t really seem like enough somehow……

Allan

[Allan Romriell]

Cindy,
I have MDS-RS so red blood cells and hemoglobin are the mostly effected. Shortness of breath when exerting myself is probably my biggest issue. I also am tired most of the time and don’t have much stamina any more. I am 66 and was diagnose almost 2 yrs ago, on watch and wait since diagnosis. Although my numbers have been steady since diagnosis and in fact my hemoglobin and RBC were better in Feb. than at any time previous, I still have the shortness of breath issue and it seems to be worse than 2 yrs ago. I don’t have any solution, when it happens I stop for a minute and catch my breath then continue with what I was doing. I wish you the best in your fight with this disease, it is so different for everyone.

[Allan Romriell]

Agree with Kathy, tired of being tired. I am also low risk watch and wait for past 20 months. I try to get enough sleep and take more rest breaks when working around the house, yard etc. But, I am almost always tired and some days are worse than others. I have noticed that I often don’t feel any worse when I am up moving around than just sitting so I try to stay as active as possible. Don’t really have any magic cure, just keep going and try to stay positive. And I am also thankful to be stable for now and try to keep going as long as I can. All the best to everyone suffering with this disease.

[Allan Romriell]

Marie,
Like Michael I am 66 and was diagnosed with MDS in June 2016 but mine is MDS-RS and my biggest problem is low Red Blood cells and low Hemoglobin. My white counts have only been low once or twice and only slightly, but reds are always low, and platelets are low normal to below normal but never below 75000. So I also am on watch and wait and so far have been fairly stable, actually in Oct I had the best overall numbers since diagnosis, so hopefully it will progress slowly. I wish you both the best. It is a little scary if you dwell on it to much, I try to stay positive and do what I can to stay healthy as possible.
Good Luck to you

[Allan Romriell]

Nicole,
Can’t comment on all your concerns as my form of MDS is MDS with ringed sideroblasts and my Red cell are mainly effected. I have not had high white counts but my platelets have ranged from 75 to 157 over the last year and I/2. The presents of Ringed Sideroblasts seems to indicate MDS from what I know, and would contribute to your lower hemoglobin number as the RS cells are deformed and not as efficient as they should be. I hope they can give you some definite answers at your next appt. When I know what I am up against it helps to deal with it. Not knowing is harder to deal with. I wish you the best.

[Allan Romriell]

Wishing you both all the best. Lets hope your husband responds well to treatment. Like you said, at least you know where he is at.

[Allan Romriell]

Gail,
I have had more pain since my diagnosis in june of last year, mostly in my legs and joints although not debilitating as your husbands is but I hurt most of the time. I feel it is from the MDS but I never see that as one of the symptoms listed but many people on this message board say the same thing, they have pain in legs, back etc. I hope he can find some relief. All the best to you both.

[Allan Romriell]

Diane,
I was diagnosed June 2017 with MDS_RARS. Platelets 75, hemoglobin 11 white count slightly low. Have had blood work done every 3 months with counts fairly stable but bouncing around a bit. In 2018 my counts were on a slight downhill slide all year with hemoglobin at 11.1, white count slightly low, platelets between 130 and 137. In October all counts were up, hemoglobin 12, white count in the mid 6’s red cells 3.91 and platelets 157. This was the best overall counts I have had since this all started. Also my bilirubin had been creeping up to high range and it dropped back to normal range. It will be interesting to see if this holds at my next appt in Feb. So, I can’t say I am getting better but in October at least I was better than I had been since diagnosis. Wishing you and all other the best, be nice if we could all just get better and stay that way.

[Allan Romriell]

Lisa, MDS is listed as a type of blood cancer. There are a wide variety of MDS classifications and statistically 30% or so of MDS cases advance to AML. I have a variation called RARS which mainly effects my red blood cells, my white cells have not been effected at this time so I am much different from your father, however we both have MDS. I am also considered low risk and on watch and wait for 18 months now with very little change. My world was also “rocked” with the diagnosis but I started research and found message boards such as this and that has helped me to deal with the reality I now live with. There is no cure except for successful Bone Marrow Transplant but many people live fairly normal lives for many many years with this. I hope things continue to progress slowly for your dad, all the best to you both.

[Allan Romriell]

My oncologist says its cancer, so does this MDS website.

[Allan Romriell]

Brett,
I would talk about anything you may think important, not all doctors think alike and what seems important to one may not be to another. My son has gone through cancer treatments including surgery and has had many frustrations with some of the doctors he has dealt with, so I would certainly get as many opinions as you can. Can’t hurt. Hope things go well for you both.

[Allan Romriell]

Brett,
As my main problem is low red blood cells I have not been given any cautions on infections other than the less illness the better just on general terms. My white counts have always been normal or very close so infection is not considered a problem as I have enough white cells to fight it, at least at this time. I have been cautioned to call if I experience bleeding and bruising due to platelets being quite low at times and if I struggle to breathe or have heart pain or related issues due to the low hemoglobin not providing enough oxygen. Other than that I have been told to continue living as close to normal as I can. Good luck with the next biopsy, hope they can give your some definitive news.

[Allan Romriell]

Brett,
I am 65 yr old, male, diagnosed with MDS in june 2017 after routine physical found my platelets were 75000, hemoglobin was 11 and white counts were slightly low. I was sent to Hemo/oncologist who ordered bone marrow biopsy and confirmed MDS-RS a low risk variation. I have been on watch and wait with checkups every 3 months since then. My main issue is low hemoglobin and Red blood counts but my platelets have bounced around as well. My last check up last month my numbers had improved to Hemoglobin 12, red cells 3.91 white cells over 6 (they mostly been good but were even higher this time) and platelets 157000 which is highest they have been since diagnosis. All your husbands numbers are low but with exception of the white counts my numbers have all been as low as his or lower at one time or another the last year and a half. I mainly feel tired and get winded easily with exertion. What I have learned of MDS this last year plus is that it is very much and individual thing and everyone reacts differently to the illness and treatment. I don’t know if this helps you any or not, I hope they get you some answers as that is frustrating. My oncologist is very happy right now with my case and says I may go several years without need of treatment, but I know it is an unknown. I wish you both the best, it was pretty scary when I was diagnosed and started reading up on it, but as I say mine seems to be progressing slowly so my fears are lessened right now. There is also a lot of research going on right now with some progress on other potential treatments so that is encouraging as well. Let me know if you have other questions.
Allan

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