How low is too low?

[camiboxer]

My father was DX'ed in Aug. of 2006 via BMB with MDS (RARS).
We assume he had it for at least a year prior based on blood counts. Prior to the BMB his family doc just tried to combat the anemia by various unsuccessful means.
Hematologist who did the BMB was of little help due to the language barrier. We literally had no idea what he was trying to explain to us. A search to find another doc ensued and we ended up at Ohio State University.
The doc is kind but seemingly always rushed.
My dad will be turning 72 this weekend and has yet to receive any treatment for MDS and we are going on 6 years post DX.
The Dr. keeps saying at every 6 month appointment..."Whatever you are doing, KEEP DOING IT."
My dad's numbers keep declining. I know at last check in Aug. 2011 his RBC was a low 9 or perhaps even a high 8 (I hope I am getting the test correct).
Dr. said that the majority of patients are receiving transfusions long before their numbers get to where my dads are yet my dad continues to say "I feel fine".
He had open heart surgery (quad bypass) in 2000 and a pacemaker in 2001. He feels 100% better NOW due to that surgery but attributes his "slowing down" to age whereas I think it *could* be more so related to the MDS.
He is happily retired so doesn't require the once needed energy he used to but still I worry about the effects the low RBC is having on his other organs (especially his heart).
When he is tired, he naps. He takes life easy and feels he has plenty of energy he needs to live a fulfilling life (although he doesn't do much). He is extremely PALE, bruises easily (could be a side effect of medications-Plavix & Aspirin). He is losing weight to the point that he looks "sickly" to me as if he is just wasting away. The weight loss could very well be attributed to him TRYING to "stay healthy" for his heart as he has done a complete 180 since his surgery 12 years ago but still.....he is looking TOO thin to me.
I don't EVER see him "complaining" to anyone about not having enough energy. It just isn't in his DNA to complain about anything. I just want what is best for him and although I would prefer he never need any treatment I fear he should be getting something to let him experience what life could feel like (more energy for example).
His platelets are normal and as far as I can remember without having the paperwork in front of me the only thing being severely affected at this point are his red blood cells.
Am I just being an overly worried daughter or are my concerns valid in that I should push for some sort of treatment to help his quality of life (which again he thinks is wonderful)?
I go to all of his Dr. appointments with him and if truth be told he really has NO idea what MDS is, just that he has something he can't pronounce and it makes him anemic.

[Neil Cuadra]

You are asking all the right questions, camiboxer. Your father may not have MDS, he may have MDS that could be treated to give him a better quality of life, or he may have MDS but be in stable enough condition that treating him for the MDS would decrease his quality of life and be an unnecessary risk. That's a very tough call to make, and to make the best decision will require you, your father, an experienced hematologist, and having all the facts at hand.

I'm glad to hear you mention quality of life; too many people (especially medical practitioners) emphasize longevity and focus on diseases rather than considering what's best for the patient's life as a whole. I'm also glad to hear that your father is content by nature and not prone to complaining; that type of positive outlook makes a big difference. That doesn't mean that his health issues can be ignored, but having you "do the worrying for him" may be the best approach because you're probably better able to research these questions and collect information.

Do you have his blood count reports from the last few appointments? If not I suggest you get them so you can track his specific counts and the trends over time.

Has he had a bone marrow biopsy since 2006? Another BMB may not be necessary at present, but if he's had another biopsy since that original one you should find out what the results were and how it compared with the original BMB.

Is your father's doctor a hematologist? I think he should have one who has experience with MDS, rather than just a general practitioner, gerontologist, or other doctor who may be expert in their field but not with bone marrow failure diseases.

If you didn't already get it, request the free MDS information package from the AA&MDSIF.

[camiboxer]

Do you have his blood count reports from the last few appointments? If not I suggest you get them so you can track his specific counts and the trends over time.

We always request two copies of the results. I keep a set and he does as well. I don't have anything directly in front of me but know that his numbers keep going lower with respect to his red blood counts. He has been told that he isn't at risk for severe infection (or complications related to an infection) due to his white count being normal. His platelets are also within a normal range.

He has not had a 2nd BMB since the one done to confirm diagnosis in 2006.

His hemo/onco doc specialized in MDS (or so his credentials said when researching for another doc). When we visit the hospital dad always makes mention of how "sick" the patients seem in comparison to him. Of course he is seeing people under going chemo, patients with ports, etc...so doesn't think he should be having his blood drawn every 3 months (twice a year by primary and twice by hemo). I just smile and encourage him to "stay on top of his health" and we get a chance to visit since he is about 2 hours from me.
I have received the initial packet and also receive the newsletters from AA/MDS (per instructions from dad's doc).

I guess I was having a weak moment and needed a little hand holding. Thank you for the response, I really appreciate it.

[bebop]

when is his next appt? I would say if he is losing weight it is time to get him in. asap. easy bruising is a sign his platelets are low too.

[camiboxer]

His next hemo visit is in August. His platelets are within normal limits and the docs think his bruising is more so related to his Plavix and daily aspirin therapy.
As far as his weight is concerned....he has lost weight due to his diet but I think he has gone too far. The docs just tell him that he looks great and as long as he is feeling well then everything is okay.