Slow-moving AA / Pancytopenia, or What?

[kazp]

Originally Posted by David M

All,

Speaking of eating and living better...

I wanted to mention something from a conversation I had with my local hematologist a while back related to personal energy and stamina -- perhaps some of you will find this helpful. I was concerned about my energy level (I had no energy) and stamina (I tire out very quickly), and I asked her if she had any recommendations for things I could to to try and maximize my stamina and energy.

She suggested two things: (1) Reducing sugars, etc., by adopting a Mediterranean Diet plan; (2) Drinking 2 oz. of Pomegranate juice daily (she mentioned some studies done of men battling prostate cancer, I think, and this had proven to be a positive benefit... maybe someone can Google it?).

Well, to be honest, at this point I haven't exactly adopted the Mediterranean Diet plan (although I have been reading up on it some, and it looks good to me), but my new eating habits due to my recent diabetes diagnosis have pushed me in that general direction. However, I have been faithfully drinking the 2 oz. of pomegranate juice daily.

Overall, I have felt a little better in the energy department. Stamina improvement? Not so much. But I'm still working on that one. I need to do a better job of incorporating regular exercise (at least walking) into my daily regimen -- exercise is a key ingredient I've not taken as seriously as I should.

Since my recent diabetes diagnosis, I have tried to adopt a better eating / living strategy... basically being mindful of my intake via reading labels and counting carbs -- and exercise. I guess I've been somewhat successful, but I still have a lot to learn. Cutting back drastically on sugar intake -- which is a personal goal I had considered for many years -- is something only now (under diabetes threat) have I taken real steps to do.

Anyway, a little food for thought... maybe these ramblings will help someone, or maybe some of you have suggestions as well.

Blessing to all,

David M

Hi David

Glad to hear you're doing well! I don't know if you've read my posts. but we're a little bit similar in some ways, and nothing alike in others. If I didn't eat honey, I'd be vegan. I have digestive dramas, and have done so since day dot. I tend to eat low fodmap, which works wonders for overall digestion and nutrient absorption, and I am very mindful that I do my best to fulfill my macronutrients. Apart from iron, protein is essential, and I do my best to incorporate as much as possible in a plant based diet. Yay, for peanut butter! I have always done this but it wasn't until I had covid last year, and my marrow shutdown, sending my reticulocytes into a spiral, that I appreciated just how significant protein is in recovery. I ate chicken for a bit there, and the results were impressive! I have read that leaning towards a high protein diet, not flat out keto, just a decent focus on protein, is a positive for diabetes also. I'm not an expert though, and I don't have diabetes. I have had a few prediabetes test results, so it is a little watch this space that way for me there. There's nothing negative to say about the Mediterranean diet. On all levels it is amazing! I can't eat seafood though because of my thyroid, but I would be all about it if I could!

Exercise is a big part of my home treatment. It helps me mentally, as well as physically. My stamina is not what it used to be. It dwindles every year, but I still manage to do up to 2 hours of low impact movement a day. This is a much shorter walk than what I used to do, as much as I can manage on my indoor bike, which can be 90 minutes if I don't walk, or 60 minutes if I do, and around 15 to 30 minutes of yoga, depending on which church mass I am rushing to get to on time. I used to jog 10kms, do an hour of yoga, 40 or so minutes of light weights, and around 15 minutes of yin yoga. I was doing so for my muscles and joints. They say motion is lotion and I agree, as I am 6 years in, and have only just started using voltaren on my knees each morning. I also have a high focus on exercise because I am pretty sedentary after that. I do what I can about the place but unlike my stamina which decreases every year, my limitations increase. I hope that you can find the drive to get that exercise happening. It really does help on many levels. There's nothing like a walk with God as the sun rises, or sets!

I also do my best not to drift off into naps, which can be insanely hard some days. This also helps my energy levels as it helps me to get better sleep at night. Sleep quality is super important when you are struggling with your energy levels. I go to bed early, rise early, and keep my body, mind, and spirit busy!

Anyhoo, I'm not a postcard for things working out fantastically, but I'm not on medication yet, and have been stable for a long time!

I hope you keep feeling well

[David M]

Hello All,

It's hard to believe it has been a year, but here we are! I wanted to give a little update to "My Story" for 2025 -- and if you haven't noticed, my story has been going on for several years now! I'm thankful for that!

Below are counts from my last 3 CBCs (12/2/24, 4/2/25, 8/19/25):
RBC:........2.68....2.74....2.77
WBC:.......4.2........4.0....4.2
Lymph #:..1.7......1.8....1.73
Lymph %:..40.9....44.9.....41.6
Neut #:....1.32....1.3....1.51
Neut %:...31.7....32.3.....36.3
Hgb:........9.8....9.9....9.7
HCT:........29....29.6....30
Platelet:...62.......76......74

Blood-wise, things appear to be stable, and for that I am thankful! It seems a little strange to say -- but boring is good (at least in this case)! Of course, I'd love to see dramatic overall improvement, but "no change" is also acceptable.

Today, I had an appointment with my hematologist at Vanderbilt in Nashville, TN. I go there once per year for a sort of "second view" of my situation, and it is always interesting and informative. He said he'd classify me as having Moderate Aplastic Anemia. He also said the appearance of my cells under the microscope was very good -- no abnormally formed or cancerous cells. It is interesting to see how his thinking on Promacta has changed over the years now that Promacta is a much better known drug. He said he'd even be open to me requesting to be put on Promacta -- but again, since my numbers are as stable as they are, and since I am not having major issues with sickness, bleeding, or undue lethargy at the moment, he advised against it. Although Promacta is a better-known med now, it still is not without side-effects (e.g nausea, potential liver damage)... and there's no guarantee it would give me more energy -- which is my main complaint. So, for now, I am not requesting to be put on Promacta, although it is good to have it as an option.

Overall, this past year has been good. My stamina/endurance is still pretty low, but as far as I can tell, it hasn't gotten any worse in the last year. In fact, I'm thinking maybe it is a tad better. (I'm not sure how to quantify a "tad"; I'm thinking it's just a smidgen more than an iota).

On a side note, I am still drinking 2 oz. of Pomegranate juice every morning. If nothing else, it's pretty tasty -- I like to think it is helping me somehow.

Also, I mentioned earlier that my GP has diagnosed me as being Type 2 diabetic, and I am trying to control it with diet and exercise. Also, due to my slightly above average cholesterol numbers and my age and my diabetes -- my GP recently put me on 10 mg Crestor daily. I don't like taking meds, but maybe this is worth it. I hope so -- I guess it beats having a stroke or heart attack. At least it is a small pill.

Overall, I don't have a lot to report, but again, boring is good! I'm still needing to find my groove in doing exercise. Not doing anything regular right now, but I am still pretty active in working around the house, etc. I just have to take occasional breaks to recharge... then I'm back at it. Still, I need to find something regular exercise-wise to do. Any ideas?

Thanks for checking in with me! I hope you are all doing well!

Until next time,
David M

[Guy L]

Originally Posted by David M

...but again, boring is good!

The medical version of "no news is good news"! I'm newly diagnosed with MDS and my various blood counts have been relatively stable for 4 years now. Doctor says that in itself is a good sign.

[kazp]

Originally Posted by David M

Hello All,

It's hard to believe it has been a year, but here we are! I wanted to give a little update to "My Story" for 2025 -- and if you haven't noticed, my story has been going on for several years now! I'm thankful for that!

Below are counts from my last 3 CBCs (12/2/24, 4/2/25, 8/19/25):
RBC:........2.68....2.74....2.77
WBC:.......4.2........4.0....4.2
Lymph #:..1.7......1.8....1.73
Lymph %:..40.9....44.9.....41.6
Neut #:....1.32....1.3....1.51
Neut %:...31.7....32.3.....36.3
Hgb:........9.8....9.9....9.7
HCT:........29....29.6....30
Platelet:...62.......76......74

Blood-wise, things appear to be stable, and for that I am thankful! It seems a little strange to say -- but boring is good (at least in this case)! Of course, I'd love to see dramatic overall improvement, but "no change" is also acceptable.

Today, I had an appointment with my hematologist at Vanderbilt in Nashville, TN. I go there once per year for a sort of "second view" of my situation, and it is always interesting and informative. He said he'd classify me as having Moderate Aplastic Anemia. He also said the appearance of my cells under the microscope was very good -- no abnormally formed or cancerous cells. It is interesting to see how his thinking on Promacta has changed over the years now that Promacta is a much better known drug. He said he'd even be open to me requesting to be put on Promacta -- but again, since my numbers are as stable as they are, and since I am not having major issues with sickness, bleeding, or undue lethargy at the moment, he advised against it. Although Promacta is a better-known med now, it still is not without side-effects (e.g nausea, potential liver damage)... and there's no guarantee it would give me more energy -- which is my main complaint. So, for now, I am not requesting to be put on Promacta, although it is good to have it as an option.

Overall, this past year has been good. My stamina/endurance is still pretty low, but as far as I can tell, it hasn't gotten any worse in the last year. In fact, I'm thinking maybe it is a tad better. (I'm not sure how to quantify a "tad"; I'm thinking it's just a smidgen more than an iota).

On a side note, I am still drinking 2 oz. of Pomegranate juice every morning. If nothing else, it's pretty tasty -- I like to think it is helping me somehow.

Also, I mentioned earlier that my GP has diagnosed me as being Type 2 diabetic, and I am trying to control it with diet and exercise. Also, due to my slightly above average cholesterol numbers and my age and my diabetes -- my GP recently put me on 10 mg Crestor daily. I don't like taking meds, but maybe this is worth it. I hope so -- I guess it beats having a stroke or heart attack. At least it is a small pill.

Overall, I don't have a lot to report, but again, boring is good! I'm still needing to find my groove in doing exercise. Not doing anything regular right now, but I am still pretty active in working around the house, etc. I just have to take occasional breaks to recharge... then I'm back at it. Still, I need to find something regular exercise-wise to do. Any ideas?

Thanks for checking in with me! I hope you are all doing well!

Until next time,
David M

Boring is definitely good! Have you considered swimming? Or walking in the water? It's easy on the joints and can certainly get the heart pumping. Your wbc is good enough for a public pool. Walking is also amazing and great for the mind. If you struggle with motivation, maybe you could look into some apps or something? Join a programme? Fitness centres provide access to personal trainers who can tailer programmes for your needs and conditions.

[David M]

Hello All,

Believe it or not, it's time for a yearly update! During this past year, things have been about the same. And remember, "same" is good; "boring" is good!

So, as far as changes in my blood condition, there's not a lot to report. My overall stamina has been the biggest concern with me of late, and I'd say my stamina is about the same as last year. Still got to take lots of breaks when working in the yard. I've had no abnormal bruising or bleeding, and have not had frequent infections. Interestingly, I had Moh's surgery on my face earlier in the year (squamous carcinoma); it all healed up wonderfully with no complications! Overall, things have been pretty good during the last year.

Today, I visited my hematologist at Vanderbilt in Nashville. He mentioned that under the microscope, my blood cells all look well-formed and healthy (there's just fewer of them than for a normal human). We talked again about Promacta -- i.e. he could prescribe it now -- but given the stability and current decent level of my counts, he doesn't recommend it at this time (and I concur). We talked about the rareness of my particular case of Moderate AA as far as the numbers not getting worse over these many years... apparently this is extremely rare; usually, in most MAA cases, at some point there is a decline of the numbers. Being a super-rare case is both good and bad: (1) good: things aren't getting worse, or if they are, it is happening very slowly; (2) bad: there are limited options regarding things to try and improve the situation.

Below are counts from my last 3 CBCs (12/2/25, 4/2/26, 8/11/26):
RBC:........2.77....3.0....2.96
WBC:.......3.3......3.7....3.8
Lymph #:..1.4......1.4....1.45
Lymph %:..42.7....38.3.....38.4
Neut #:....1.13....1.5....1.58
Neut %:...34.4....39.4.....41.8
Hgb:........10.2....10.1...10.5
HCT:........30.3....31.8....31
Platelet:...78......103......93

Counts are mostly about the same. I am slightly encouraged by the Platelet numbers (maybe creeping upward? This is the highest they've been since 2003!); and the doctor was happy about the Neutrophil numbers of late.

Well, time to wrap up this report. BTW, some good things have happened lately unrelated to my blood problem:
(1) We had our 3rd grandchild ("Patrick") earlier this year!
(2) I retired from work on June 30 of this year! I retired a little early (at age 62.5 years).

So, there is the yearly report! Not a lot of excitement, but as I told the doctor today: It's a good life!

Until next time,
David M