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camiboxer
MemberMy dad (RARS) diagnosed back in 2006 but previous blood tests show he had MDS upwards of at least a year prior. No transfusions or other forms of treatment as of yet.
He has his blood tested every 3 months with either his PCP or his hemo.
We keep getting told that whatever it is he is doing he should continue.
He might be a little more tired than his “normal” however he just blames it on age (68). He has some bruising every once in a blue moon but his platelets are well within normal range. He takes Plavix and aspirin for heart and carotid issues so perhaps the bruising is related to that and not the MDS. No other complaints from him.
Some days I think that if he had some form of treatment (transfusions perhaps) and his rbc’s could come up he might notice that in fact he was more tired than he thought but they say he doesn’t need it because he doesn’t complain of anything.
I suppose that it is best that he doesn’t have to add more meds to his current routine but I always wonder if he could feel better with something.MemberMany peaceful thoughts and prayers for you and your family.
MemberI am so sorry for your loss. Having lost my mother (not to MDS), I know how irreplaceable their love is.
Sending many prayers your way.
She has returned to her perfect healthy self. Try to take comfort in that.Member***UPDATE***
Dad had his scan this week in an attempt to find out more about the spot on one of his lungs.
They said it was “nothing abnormal”…..a spot on the lung IS abnormal if you ask me but I digress.
This was through the VA and forgive me anyone who receives care via the VA BUT…..
They also did blood work while there and never ONCE made any comments about his numbers. They could have mentioned that things look low, off or whatever but just said everything looked good (his numbers are not “good”).
The whole thing makes me angry. What if he didn’t know he had MDS? Not that the numbers alone would tell anyone that but it should be cause for alarm and talk of investigating what could be causing them would be in order.
I know it’s a moot point since we already know and have known but still….it’s the fact of the matter. Poor health care abounds.
Makes me not trust the findings with the spot on the lung. Angry and confused!!!MemberMarla,
Thanks so much for your positive thoughts and prayers. It really does help. I suppose I just needed to vent. I’m hoping that his spot is nothing so that we can continue to focus on his heart issues, including pacemaker that will need replaced soon and this darn MDS.
Thanks again.MemberI always follow the motto of “Treat the patient NOT the numbers” (blood work, test results etc…).
At this point she needs some type of nourishment to gain strength. That would be my number one priority if it were my dad. Good results can make one feel better emotionally but if the body isn’t reacting like it should with the good numbers then the numbers mean nothing (on a personal level–if that makes sense?).
Are there any type of high calorie drinks/meals that she might be tempted to try? I know there are a few out there but I can only come up with Ensure at this particular moment. Of course run anything “new” past her docs before attempting.
I hope she rounds this corner soon.
MemberMy dad (68 years) was dx’ed nearly 2 years ago but had signs of MDS (bloodwork) for probably at least a year prior.
For whatever reason he hasn’t had anything other than a slight cold that was short lived since diagnosis.
He has been lucky so far and is still not receiving any meds for his condition and has never had a transfusion. I contribute it to his stong faith.
He does suffer from constipation but was told it was probably the meds he takes for his heart issues. He manages it with Miralax daily. I never thought about it possibly being related to MDS.MemberMarlene thanks for the info.
Dad has done everything in his power to get his heart issues under control. Sadly for him he has a terribly bad family history of heart issues and he is actually the only male to have made it past age 45 (he just turned 68). He is at a healthy weight, his cholestrol is wonderful. He eats all the right foods, takes his various supplements and meds on schedule. The only thing lacking is exercise. He has problems with his feet that require surgery but he refuses to go thru more surgeries (I don’t blame him). The surgeries can’t give a guarantee of success. He is the only driver in the house and lives in a very rural area. He doesn’t want to be homebound for 3-4 months which is what the recovery time would be *if* all went well.
He is active, he just doesn’t follow an exercise routine like he should.
His GP is probably not the best….more along the line of “You look good and you say you feel good so that is good for ME”.
His cardio is sending off a letter to this oncologist with his thoughts on the Plavix so that will be helpful.
Thanks again for the info.MemberNeil will be missed. His knowledge and insight on so many things has helped me to better be able to help my father.
He touched many lives. What a wonderful and unselfish soul he was.
God Speed Neil.MemberI am so sorry for your loss. It is obvious from your words that your dad will be greatly missed.
Peace be with you and your family.MemberThanks you so much for the info….easly explained in laymen’s terms!
Thanks for the link as well.
Much appreciated!MemberAre the mentioned foods for ALL patients with MDS or just those undergoing chemo?
MemberI am so very sorry for your loss. My condolences.
MemberZoe,
Yes, my dad is the one in McArthur, (great memory!).
Dad sees Dr. Blum at The James.MemberMy dad had an appt yesterday with his hemo. His CBC did not list any blasts……WE ASKED about this since I had previously read this particular thread.
We were told that HIS CBC would indeed show blasts percentages *IF* any were in the blood. If none were it would not be listed as 0% but nothing would be listed at all. Depends on the lab & if the Dr. calls for a count of those numbers.
Happy to report that dad did not have any. -
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