Hey all,

In outpatient as I type getting blood units. Was suprised Friday when had blood work for transfusion which was end of week after the chemo week the wbc had gone up a point instead of dropping. hct was down so in here today getting refill. platlettes were normal a couple of weeks ago but had dropped back to abt 60 on friday. Arms are full of bruises from chemo iv stuff but thats ok too. Every time I get tired of the needles (75 chemos now) and related junk I realize first I'm still alive and second so blessed as so many around the world go through this junk and so many other ugly diseases and have no access at all to any medical treatments.

You all have a fantastic week

Mike

If I have to be on a leaky boat, I am glad to be on it with all of you! I went to the Dr. today and for two straight weeks my hemoglobin has been pretty good (specifically speaking for me, of course). Last Wednesday it was 10.1 holding over from the previous Friday when I was given 2 units and today almost two weeks later it was 9.9! My counts have not been that high in awhile nor have they held so i am very happy that it has been two weeks without any blood. My WBC and Platelets are normal. I have been taking Revlimid for a week now and I have not had any side effects so fingers crossed that it continues this way. Have a great day and stay strong! xxooJeanine

Jeanine,

Great news! Continued good luck with the Revlimid.

Zoe

Well I appear to have survived the cataract surgery. As I suspected, the Dana Farber MDS specialist could not confirm classification or prognosis without a further bone marrow which I submitted to.
I forgot that I should not lie down on my cataract surgery eye while marrow sample was being taken. I hope I did not worsen the eye doing so. Too many things happening at once. Maybe still in a fog from the cataract surgery anesthesia. I should have something definitive in 2 to 4 weeks. Meanwhile eye drops in the cataract eye and testing for aranesp Sep 10. Hopefully your lives are not as confusing...

Hey, Ron and Mike - I can't tell exactly how bad your veins are, but have you considered having a port implanted? My husband finally did over a year ago and since he gets transfusions every week, it sure has made life easier. Ron, I dig the 'rolling' veins. You need an experienced nurse to deal with those little buggers!

The nurses have mentioned getting a port. Their the ones who have to get the needles in. The great nurse that put the iv in for the blood transfusion Monday got right into a vien just above where a big bruise from where another lady had failed. One of my problems is that I've asked them to use the left hand and arm so I could occupy my time with the computer during the treatments. I finally let them start leaving the IV in for 3 days at a time saving a few more pokes. I'm going to look into the ports.

I go for chemo/dacogen again just past mid Sept. The chemo is keeping at a low but level base but I've started needing the transfusions for the anemic related symptoms every few weeks. I can't find much info on the treatments for iron overload that may come down the road or what if any predictions can be made about longevity related to becoming transfusion dependent if that is where I'm at.

In the meantime life is great, grandbabies are great the family of cats outside are happy and full of themselves. You all have a great weekend. The weather here is finally breaking and getting comfortable and good.

Mike

I'm not ready to get a port as I usually get blood draws not more often than once a week. Ports need to be kept dry and I like to go swimming. My Dad when on dialysis had to have a port on his chest as his artificial arm veins kept clotting, but by then he was past the swimming stage. So for now I live with the black Y blue stuff.

Ron, I hope all has gone well with your surgery & Dr visit. Saw the vampire Tuesday, and my Hgb is staying nice & steady, 10.5 this time.

And how is the rest of our crew doing? Pretty quiet right now. Is that good news?

Just before Labor Day. 96 degrees expected today. Have to find a cool place since I can't get my bone marrow puncture or cataract operated eye wet yet. Then tomorrow hurricane Earl comes calling. Hope you have better weather!
Other people are hopefully busy with non-medical things...

Sunny skies, big beautiful waves and hope Earl stays far away. Either way we will be enjoying 6 hrs at the hospital for blood transfusion #5 since May. Cannot seem to get numbers above 9.

Dad seems to be doing a little better. He got more blood today. first time in awhile it has been 2 weeks between! normally a week to 9 days or so! whew! good to see everyone is doing ok and hanging in!

It's nice to hear from everyone and to know that we are all in this leaky boat together. I am on this roller coaster of low red blood counts and not sure what to do. I got off my monthly chemo (vidaza) Aug. 23. At the time I started chemo, my hemoglobin was 9.5. I had my blood checked a couple days ago and am 7.8. My doctor in Illinois asked if I wanted a transfusion and I said no. I am thinking and hoping that my counts will come up on their own since I am one week off chemo and my counts should be low and starting to build. It has only been two months since my last transfusion and I this would be more frequent that my 3 month transfusions. Who knows.....I know i need a transfusion because I don't have the stamina or oxygen to do what I want to do. I leave for MD Anderson a week from tomorrow, my appt. is on the 13th, so I think I will try to hold off until I see my doctor there. My platelets and WBC are okay so that's not a problem at this time.

Yeah thanks for sharing everyone about where they are at. My Dr today said that it was ok for me to put my MDS on the shelf. (Which is what I have been doing.) As long as my platelets are over 20 he isnt worried, so neither am I. Todays results once again didnt come in on time!!!!! Grrrrrrr.

Time for a whinge: I travelled 2 hours to get there and when I have nothing much to show for it... I wonder why I went all that way in the first place. I am so tired now, but just wanted to let u all know that I am doing good. Except for my bruised hands, arms, feet, and thighs. Not too much, but noticable. And my gums bleed if I clean my teeth too hard. But the fight goes on...... to live as ME, not an MDSer. Even though I am proud to be in the Leaky Boat Crew (because you're all awesome).... I just want to live my life. Thanks again for listening. xx Jules

I'm starting to worry. No, not about MDS--hurricanes! I'm going to Charleston, SC, for a couple of days next week & then cruise to the Bahamas on Sept 11. You think that may have been a bad date to choose???

Not sure Sharon... But maybe we should all climb aboard to safety seen as our boat is leaky! I've never been to the Bahamas...

Have an awesome time! Jules