Becky Jean, sounds like you've been having a rough time. I'm happy to hear that at least you're cooling down. Here in central Calif, we are NOT!

My last blood count was quite good, 9.8. Bless the blood I was given. I never thought to see these levels again. Sharon

As you know I had 1 unit of platelets and 2 units of blood on Tuesday
after receiving 2 units of blood the previous Tuesday, well I went in for blood work today and the HGB (11) is up which is good but the white is still down as well as the platelets. Soooo I'm headed for another platelet transfusion tomorrow. The rate I'm going I may not be able to begin Cycle 2 on July 23rd. This is a wait and see situation.
Have a great weekend everyone and stay healthy.

Sandy,
What is the name of the clinical drug and for what? Joe is in the trial for eltrombopag which hopefully will keep him from needing platelet transfusions. He is just starting so we are keeping our fingers crossed. He was supposed to start a couple of weeks ago but after the first pill, he became ill and wasn't going to continue but doctors have convinced him that it was a fluke, not drug related at all.

The drug is Revimid which has bee around and I believe successful for those with MDS type RARS with deletion 5Q (not sure if that's quite right). I don't have the 5Q thing so I assume that is why it's a clinical study to see if it works on those without it.

Have my BMB on Thursday and should have results on 7/27. Leaving on my trip the next day so will not start anything till a week later

Hugs to you all!

Sandy

I would like to know how everybody copes with the fatigue. When I have asked my oncologist in the past he says that my counts are high enough where fatigue shouldn't be a factor. That was last April and i don't revist him until October. But I am finding that more and more each day the bouts of fatigue seem to take over my afternoons. If I am really busy one day, I really pay for it the next and I feel exhausted. I do my best to get a good nights sleep normally 7 hours. I have read conflicting articles about MDS and fatigue. I've been told that exercise helps but I just don't have the energy to do that. I am low risk and am not on any type of treatment yet. Suggestions would be appreciated.
Thanks and hope everybody is having a great day!
Janet

My latest blood count, yesterday, is 9.6, so I'm still doing well on Hgb. My white count continues to drop, tho, & even my platelets, altho well within the normal range, are the lowest ever.

I feel fine, so that's what counts.

Janet, about dealing with tiredness--I haven't quite figured out the key either. I went thru one spell a couple of winters ago when I was just drained, yet my levels weren't that bad, as you say. I think the fatigue so many of us experience must have other factors that aren't recognized via our blood counts.

Still, I've learned a few tricks--mostly to pace myself. I do something, then rest. I do that all day long, & it works until after dinner. Then I'm done in for the night! Also, I require a lot of sleep--9 or 10 hours--so that is a priority. I'm not a good napper, or maybe too good (my naps are 2-3 hours), so I don't take them very often. Maybe that would help you, tho.

About exercise, start slow & build your conditioning. My main exercise is line dancing twice a week. That's pretty vigorous, so when I lack oomph, I sit out if necessary. But I don't quit; I know how good for me it is. Sharon

Thanks Sharon for your thoughts on the fatigue. I am impressed with the line dancing! I personnally have no rhythm to speak of :)
But I have been getting out in the pool in the late afternoons and swimming some but when I am done doing that, like you say I am done for the evening. I guess just taking one day at a time is what it is all about.
Take care!
Janet

Hope everyone is staying encouraged Mom has her good and bad days but she is still here......Praying for you all

Energy levels continue to be an issue for me. I have to remember that age also plays a factor, and have to learn to slow down and accept the fact that I cannot do as I once did.
I'm back on Dacogen beginning today. Cycle two was delayed a week so started the 5th week. Blood levels were low today but will have transfusion on Friday depending on blood work on Thursday, but definitely a platelet transfusion.

All these transfusions have spiked my iron so back on EXJADE. There is never a happy medium.

Just trying to keep thinking positive that the Dacogen will work.
Stay well everyone. Hugs to all!

Joe was at Moffitt Cancer Center on Wednesday and after a month on the clinical trial drug, his platelets are 148. Up from low 70's the week before. We are hopeful the drug is working for platelets. Hgb continues to be a problem. He is always tired and out of breath (maybe CHF?). Has blood work tomorrow and most likely a blood transfusion.

Platelets up to 200 but Hgb in the high 7's so another blood transfusion. But the clinical trial med for platelets seems to be working. Yeah!!

Hi everyone,

I thought I'd posted my last results--Hgb 10.0!--but apparently not. I was absolutely floored because I'd been extremely tired for a week & thought my count was zooming down. Instead, it was higher than it's been for some time.

So again, something else is going on with some of us that causes the extra tiredness that apparently does not stem from Hgb levels. I did have some physical issues, so maybe it was just a bug.

I'm feeling much better, but it takes me a while to get the body going in the morning. Couldn't be old age creeping up on me, could it? lol! Sharon

Hi All,

Just got back from vacation. Like I had said, saw the doc day before we left. My white count and platelets dropped but HGB stayed about the same (11.4). Now she is not sure if I should start the Revlimed on Aug 10 or not.

I had my mind made up that I was going to start treatment, so I'm not sure how I feel about not starting.

It will depend on what my counts are when I see her on Aug 10. But she still ordered the drug for me so I'm guessing that she thinks I will drop again.

So all I can do is wait for Friday. It's in the Lord's hands and He will be watching over me whatever happens.

Sandy

Thought you all might be interested in this Leukaemia Foundation video on MDS; http://present.knowledgevision.com/account/staging/link/Leukaemia_Foundation_MDS_

Cheers
Rachael

Sandy, did you begin or not?

Rachael, thanks for the link. So far I've managed to watch about a fourth of it. (And probably retained 1,1000th!

Hgb 9.4 yesterday--a drop, but still good in my book. I'm feeling good, only real tired occasionally, & that's probably from the August oven days. Sharon