[Allan Romriell]

Thank you Mairi for the info, I hope your dad doing ok. Its hopeful when I see others who have survived as long as your dad, hope I do as well.

[Allan Romriell]

Donna,
My Oncologist has not given me any indication of what conditions he would consider starting treatment. He told me when he gave me the diagnosis last july that I had the disease but it wasn’t doing much yet and I might not need treatment for a year or two. When I saw him in October for my 3rd apt after diagnosis he said the I might not need treatment for 3 to 5 years, so I concluded by that my MDS is progressing slowly for now. I have read that most drs don’t consider treatment until your hemoglobin starts dropping below 10 or other blood counts drop real low. My white count and platelets have been in the normal range for several months now, and hemoglobin is higher than it was when I was first told I might have a problem and needed a bone marrow biopsy. I know MDS-Rs can progress very slowly so I hope that is the case with me. I am 65 by the way and was told I had a problem during routine blood work for a physical last april. Took until late june to get to BMB and was given the official news in early july. MY guess is I have had this about a year now, judging by the way I was getting tired and my joints started hurting a lot more around march of last year. Just thought I was getting old. I hope all goes well for you and your MDS is a slow progress as well. All the best.
Allan

[Allan Romriell]

Karena,
You should mention it to your doctor. I don’t know if that is a symptom of MDS or not, I have not experienced anything like it, but I am not having transfusions either. As I am sure you have read, this disease effects everyone a little different. Let you doctor know of any developments you experience. I wish you all the best.
Allan

[Allan Romriell]

Donna,
Not sure on the back pain, although I have some too. I have noticed more joint and bone pain in the last year( I was officially diagnosed in June 2017 but blood work in april showed low blood counts so I suspect I have had this for close to a year). Joint or bone pain doesn’t show up on any of the symptom lists I have seen but many people on forums like these have mentioned joint and or bone pain. It is a bone marrow failure disease and your large bones are where all the marrow factories are that are effected by MDS so seems like bone problems would be likely. I hope all goes well for you. I just had blood work this month and it had not changed since October so my Doc is pretty happy with the slow progress. I go back in april, he has me on every 3 months right now. My main problem is low red blood cell count and low hemoglobin, but they are only slightly low 11.6 hemoglobin and have been holding steady around there for several months. All the best for you, I hope it goes well.
Allan

[Allan Romriell]

Donna, You might want a 2nd opinion. I have MDS-Rs confirmed with a bone marrow biopsy and my numbers are better than yours. I know there are many different classes of MDS and I am no expert, but your platelets are lower than mine were when the sent me for a BMB. I wish you all the best, as Ray said above, this disease is highly unpredictable…..

[Allan Romriell]

Jackline,
So far all I have done is try to eat a little healthier, and I take a multivitamin for old guys and my wife has started me taking some essential oils that are suppose to help with cell health and are antioxidants. I think she started giving me those in sept and it may be placebo effect I don’t know but I have felt less fatigue since starting on them. My last apt was in mid October and only problem was some mild anemia. Platelets and white blood count was in normal range and hemoglobin was back to 12. My lowest numbers however were still pretty mild compared to many. I think my lowest was platelets at 75000 hemoglobin 11 and white blood count a little low, I don’t remember the number. Those numbers were in april from a routine physical and from that I was referred to hemotologist who diagnosed MDS with a marrow biopsy. Since then platelets have bounced a little but steadily higher and white count was good by june as still is, hemoglobin has steadily increased from 11 to 12. ( I am 64 almost 65 by the way). I know I am lucky to only have a low risk version of MDS so far. I hope your mother can have some improvement. This really is a nasty disease and is so random in the way it effects everyone. I wish you all the best.

[Allan Romriell]

Helen,
What a battle, glad you seem to be doing a little better. I have only been on this MDS journey since june of this year and so far it has been nothing but check ups as blood counts have improved on their own so no treatment needed for now. I wish you all the best. Take care.

[Allan Romriell]

It was the same for me, I had low blood counts on a routine physical. I was referred to a hematologist and he sent me for a Marrow Biopsy. I think he suspected MDS but didn’t say anything to me about that till he had the biopsy results. Mine turned out to be MDS-RS and for the most part my only symptom is anemia from low hemoglobin, most other counts stay in the mostly normal range so its wait and watch for now…. good luck to you both

[Allan Romriell]

Thank you all for the information, it is encouraging to hear from others who at having some success in fighting this disease.

[Allan Romriell]

Owen,
Just wondering what variation of MDS you have. I was officially diagnosed with MDS-RS after BMB in late june 2017. Routine blood work in april showed platelets were 75 and other counts somewhat low also. AT my last apt in mid October platelets back at 150+ and only hemoglobin a little low at around 12. This is with no treatment on watch and wait. This is one strange disease, seems to be all over the map with everyone. I am glad your treatment is working well for you right now, I hope when mine progresses to treatment phase that the drugs will work for me. All the best to you.

[Allan Romriell]

Thomas, Yes I have MDS, RS is the subtype, which is a very low risk version. The first clue something was wrong came in april when I went in for a physical and my platelet count was 1/2 what it should have been, red blood cells were low and so were the whites I was told. They sent me to a hematologist who sent me for a BMB as he could see no reason for my blood numbers. That verified the MDS-RS diagnosis but my blood counts were already rising. I was put on a watch and wait track and have been back to my Hematologist 3 times since BMB. My last check up was mid October and my numbers were all normal except red blood was a little low(hemoglobin around 12) so he is very optimistic and set my next apt for January. So far I have not had to alter my life much except that there are times I get more tired than before and I just don’t have the stamina I had. That is the long term effect of the anemia caused by low red blood count. I do know that down the road things will deteriorate as there is no cure, just treatment to try and slow the progress. I will be 65 in January and if I survive the “average” time of people with MDS-RS I should have another 8-12 years. So it could be worse but I do hope you don’t have this or anything else. Let me know how it goes, good luck to you.
All the best,

[Allan Romriell]

From all I have read, Bone Marrow Biopsy is only way to positively diagnose MDS. I think my DR suspected MDS from blood counts but sent me for BMB to verify. I had no symptoms either, just low numbers in my blood work. I hope it goes well for you….

[Allan Romriell]

Thanks John, through talking with other people I have found that there are many symtoms which Dr’s say aren’t part of the disease but many people experience. Thanks for your input and good luck to you too.

[Allan Romriell]

Sherry,
Thank you for your response. I am glad to hear your transplant has been successful and you are much your old self. I will e-mail you with more questions I have, I know everyone’s road with this is somewhat different but it helps hearing of others experience, especially someone with the same variation as I have.
Thanks again,

[Allan Romriell]

Gayle,
I am 64 and was diagnosed with RARS a few months ago. From my study this seems to be the mildest form of MDS there is but for you to have survived 31 years with it is pretty amazing from all I have read. How long have you been in some type of treatment? I am on wait and watch right now and hope to stay that way for quite a while, but I know it can change in a hurry. When I see someone like yourself who has survived so long it does give me hope. Thanks for sharing and for all you do.

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