MDS/Low Hemoglobin/Short of Breath?

[cheri]

Good Morning all!
Last night and this am I feel the need to keep taking deep breaths and yawning....not gasping for air but noticeably breathing differently...especially after I eat!
I am currently in the late Nadir stage of 3rd round Vidaza treatment; my last hemoglobin on Friday was 8.7--I'm assuming it is lower today....how low before symptoms appear? Generally, my blood oxygen is 100% whenever I am monitored, which is twice weekly..

I also have upper back soreness, not pain, that comes and goes...clear lungs, no cough...
Any feedback is greatly appreciated!
Happy Sunday and hange in everyone!

[Birgitta-A]

Hi cheri,
You know you can have infections in the lungs without cough. Do you have fever (I control my temp twice a day since neutropenic fever 2007)? How about your WBCs!
Kind regards
Birgitta-A
71 yo, dx MDS Interm-1 May 2006, tx dependent, Desferal and Exjade for iron overload, Neupogen injections for low WBCs, Thalidomide and Prednisone for bone marrow fibrosis, asymptomatic

[Susan L]

Originally Posted by cheri

Good Morning all!
Last night and this am I feel the need to keep taking deep breaths and yawning....not gasping for air but noticeably breathing differently...especially after I eat!
I am currently in the late Nadir stage of 3rd round Vidaza treatment; my last hemoglobin on Friday was 8.7--I'm assuming it is lower today....how low before symptoms appear? Generally, my blood oxygen is 100% whenever I am monitored, which is twice weekly..

I also have upper back soreness, not pain, that comes and goes...clear lungs, no cough...
Any feedback is greatly appreciated!
Happy Sunday and hange in everyone!

Hi - I am on my third round of Vidaza and going into my nadir time pretty soon. I wanted to let you know that I also have that happen. Lungs clear but I get this shortness or difficultly breathing - and after I eat. It is weird, it happened when I was on Dacogen also. I just figure it is a side effect of Vidaza. Hope you do well. I have my next treatment the week of the 29th then in December a BMB to see if it is working. Best of luck to you.

[cheri]

Thanks for your replies ladies..Birgitta, I see that you are quite informed and involved...Wow--this sure is a full time job...you must feel like you are still in practice! I live alone and in a pretty remote place...a sister nearby and a friend, but kids are far and I'm divorced....
Susan, seems we're in the same canoe! Keep in touch--it's great to have someone to compare Vidaza notes with, since we are pretty much on the same schedule.. Other than needing Zofran (anti Nausea) , I handle it pretty well....

I spent Tues nite last week in the hosp as my platelets were 2k!
Recieved 2 unit platelets; up to 92K post...temp fluctuated all week hig 98's' 99's and a couple 100+...no other symptoms; felt fine. Place on Cipro/ Vanco mycin and left with Rx for Levaquin.

No fever at all Saturday and Sunday...

Today
Now on platelets-- Mon and Thursday regimen.
Had CBC this am: WBC 1.1; Platelets; 12, RBC 8.9--Temp 99.3
Had Post platelet CBC 3 hours later....RBC 7.9....?
How is that possible to drop that much that fast? I would have expected a low reading this morning, based on the breathing issue over the weekend that has since subsided. I'm confused! Now they want me to have 2 units again tomorrow, just had some last week...concerned about iron overload...how is that diagnosed? Or is it just rote after X units? (Some say 8, some 20, some test first...)

Overall, I feel normal, look good. My blood oxygen is always 100%!

Any insight or info is appreciated--I know everyone is different, and I tend towards the a-typical....trying and fighting to be one of the exceptions!
Take care and have a great night, and thanks again.....
Cheri

[Mary4Mike]

Hi all,
I just wanted to add another experience to the shortness of breath topic. Whenever Mike's HGB was low, no matter due to Vidaza, Dacogen, or when he was completely off treatments and getting ready for TX, he had shortness of breath. He would describe it as heavy chest and his legs also felt heavy. The oxygen levels had nothing to do with it as they were always normal. Our doctor explained that if there weren't enough red blood cells to carry the oxygen, it didn't matter how high your oxygen levels were. This is why they don't give supplemental oxygen during these times. It would do no good because there aren't enough cells to deliver the oxygen.

Hope you are feeling better once you come out of your nadir.

Mary

[Susan L]

Hi - Cheri - I am glad your shortness of breath is better. Mine gets better after a few days. I agree Mary it is the Hgb level and not enough RBC's to carry the O2. I so seem to have more tiredness than alot of people so far on the Vidaza - I work full time and just seem to be tired more so. My counts have held up so I have not needed transfusions so I am happy for that. In the past before ATG treatment I was getting about 2 units twice a week and developed alot of antibodies. Hope things hold up well for all. And Brigetta you are very smart and we all gain so much from your help. Thank you for taking your time. Good day to all.

[Birgitta-A]

Hi cheri,
I think the low counts can depend on Vidaza and when the WBCs are low you can get infections that decrease your counts - it is a negative circle.

It takes years to develope symptoms from iron overload. They look at the ferritin level. Some researchers think that it is best to start iron chelation when the ferritin level is more than 1000 others think that all discussions about iron overload only make the patients afraid.

You know I learn a lot myself when I try to answer questions.

Hope you will have a good response from Vidaza treatment!
Kind regards
Birgitta-A

[Dick S]

I can relate to a lot that has been said here.

Suffer from chronic fatigue.

Have yawning attacks that last for several minutes. Several times a day.

Suffer from chronic sneezing though they can find No allergies?????

I get "wiped out" and short of breath soon after I've been eating a few minutes. Doc explains this is natural because when you eat your brain signals to send blood to the digestive tract and stomach muscles to digest the food, robs the rest of your body.

I have other periods when I can breath absolutely normal at a normal or even slower than normal pace, but have the overwheming feeling that I am "drowning". Anyone else experience this one?

Enough out of me today.......................thanks

[mausmish]

I get the sneezing, especially right after I eat, many times in a row.

[Dick S]

Originally Posted by mausmish

I get the sneezing, especially right after I eat, many times in a row.

Thank you, at least I know I'm not crazy. Docs say it is not a symptom, but I didn't have it before I had MDS. Go figure.

[Susan L]

Ditto - here too. We are not crazy - and the chronic fatigue is really my biggest complain - along with the breathing situation from time to time