Feeling helpless

[camiboxer]

My father was diagnosed with MDS (RARS) in 2006. He is 73 years old. He has never had any type of treatment for his MDS. He seemingly does fairly well and for that I am thankful. He is seen by his hemo/onco doc twice a year and his blood is tested twice more each year by his family doc.
They keep telling him to continue to do what it is he is doing. RBC is low, white and platelets are well within normal ranges. A couple of his kidney & liver numbers are slightly off but no one seems to be worried about them.

He is retired, lives a simple life and keeps busy with family, friends and church activities. He can easily rest/nap when he feels the need.

Last night he told me that while out for the day doing various things he dozed off at the wheel, went left of center but woke in time to see that he was directly in the path of an oncoming car. Crisis was averted but I am now concerned that his tiredness is coming into play. He said his routine for the day was "typical". Labs were done last week and while we know he has MDS the numbers were not any different than they have been in the past. They do drop a smidgen every year or so but nothing significant. Doc has said that if he were a younger man, perhaps with a job he would need to have transfusions as he would not be able to function well with a more "normal" schedule.

I do not know and can only wonder if this is the start of things to come or if this was just one of those things that happened. Is it time to get serious (so to speak) with the disease and to help him to see (with a docs guidance) that perhaps he try something that would help his energy levels? He is the type of person that is just happy and content to be alive and feeling "well". He does not specifically understand his disease. He thinks any symptom he has (like being tired) is directly related to his age. He is happy when a number increases by 0.1 - thinking that he is improving despite the number being 3.5 below normal (for example).

Distraught and worried here. Any words of wisdom would be appreciated.

[Birgitta-A]

Hi camiboxer,
Your father seems to have managed very well since dx 2006 . Perhaps they should control his HGB, WBC and platelets more often than 3 or 4 times a year.

You have to follow these counts and if the HGB is too low he could try Aranesp or another EPO drug that increases the HGB in many patients. It is important to know how high your father's EPO is. Our kidneys make EPO and if it is high (more than 500) more EPO from injections won't help us.

If Aranesp doesn't work some patients will respond if they combine Aranesp with Neupogen or a similar drug for WBC.

Hope your father will get treatment for the low HGB and that he will respond!
Kind regards
Birgitta-A
74 yo, dx MDS Interm-1 2006. Positive results with Thalidomide + Prednisone.

[camiboxer]

Perhaps they should control his HGB, WBC and platelets more often than 3 or 4 times a year.

Do you mean he should possibly have his blood tested more often than 4 times per year? Since DX his numbers have pretty much stayed the same. A downward progression of course but always within 0.1 of the previous visit. Typically hovers right around 10.
I believe EPO was briefly mentioned a few years ago as a possibility *if* he had been younger and someone with a schedule that was more typical (working person). I think he has felt the same for so long that he doesn't realize that he is lacking in energy.
I don't know if his own EPO number has ever been mentioned or tested?
That is now on my list of things to ask at the next hemo appt.

[sstewart09]

I know that my husband's platelet threshold changed as he waited for transplant. He functioned well at a pretty low number, but as time passed, his gums and nose would start bleeding at the same count that never was a problem before. I wonder if the same can happen with hemoglobin?

[ssdavi71416]

Could he possibly have sleep apnea as well? Has he ever had a sleep study?It sounds like his Hgb is around 10 is that correct?

[camiboxer]

He does not have sleep apnea. No sleep study done. Yes, his HGB hovers around 10.0. When first diagnosed in 2006 he was at 11.4. In the past 6.5 years since DX it has slowly gone down to this current level.
0.1 drops at a time. Never more than that in any given check-up (every 3 months).

[Birgitta-A]

Hi camiboxer,
With a HGB of 10.0 your father should be OK so he is perhaps right when he thinks his tiredness depends on his age and blood work 4 times of the year can be OK. His disease seems not to be aggressive .
Kind regards
Birgitta-A

[gramous]

hi camiboxer...
RARS is normal one of the lowest risk mds... 10 in hemo is really good and if you're father do it right with this level, no management is required... the most important is the quality of life.... my boyfriend has a normal live with an hemo level of 9, he doesn't have any transfusion of EPO.... The latest for treatment is the best.... Don't worry and enjoy the life with yourt father....

[billyb]

Camiboxer, As gramous said, the longer you can put off infusions the better, getting red blood transfusions carries its own set of problems in the long run. You may be in the wait and watch mode for years to come, I wouldnt fret to much unless things out of the ordinary start to happen....Billy