good news in that all counts took big jump from mini scare. still wb at 1.9 and hgb at 8.6 neutriphiles way up tp 50%. all low from normal but doc said all fairly normal for as much chemo as I have had so just have to use extra caution around people to avoid infections. Getting chemo as I write this. two more days then go through week 2 uuugh lol and go see the grandbabies the next week

God bless and have a great week all
Mike

the blood drive is tomorrow! I am so excited and Dad will be able to make it to see what everyone is doing for him! I can't wait!

Hi All

I had my appointment with the specialist this week. The bone marrow biopsy results have changed slightly. The chromosome test takes time and so those results were not ready. My blasts cells have increased from 2% to 6%, but the specialist wasn't too concerned as he is pretty positive that Revlimid will bring the blasts cells down. Anyway the dizziness and nausea I've been experiencing are still a mystery to the specialists as theyre not typical MDS symptoms. Ive been taking nausea tablets and theyve been alleviating the nausea considerably. In two weeks I will commence with Revlimid (Lenalidomide). The Specialist said I will probably have another BMB in six months to review my blast cells and cytogenetics. Ive got some praying and positive thinking to do. Im hoping Im one of the lucky ones who dont experience too many side effects.

I just received my appointment schedule from Dana Farber.
It turns out the delay in receiving my appoint at Dana Farber was because my HemOnc's secretary had to first send over my blood and marrow tests. I am also to see not only the MDS specialist, but the allogeneic stem cell transplant specialist. So I have to start gearing up for some interesting discussions Sept 1. I am suspecting that my prognosis will not be as good as I hope it is for the rest of you. So watch out for 50% tetrasomies.

Good to see people posting again. We've been just hanging out on the sidelines but it's now time to get back to posting more regularly. We sure miss Chris but I'm certain he'd want us posting more (not less), so here goes.

Lou's last hemoglobin was 9.1 (3 weeks ago) and he was feeling rather poor so he went in for another blood test (thinking it had fallen further) and was pleased to find out is was still 9.1.

High blood sugar counts are still troubling him and between that and the 9.1 blood count reading...he's been a bit depressed. Doctor suggested increasing his anxiety meds and hopes it will make him feel better emotionally which may in turn help his blood sugar numbers.

Aussie Rachael - glad your nausea treatment is working. Good luck with the Revlimid. You're going to be one of the "lucky" ones. :)

Poshshorty - good luck with the blood drive tomorrow!

Mikeytj - keep up your positive mental outlook (PMO) and enjoy those grandbabies.

Birdmom - sure glad your Aransep is still working for you and so sorry to hear about your brother-in-law's passing. Wow - that was quick. How's your sister doing?

Lou & Gayle

Hi,all! Birdmom & Zoe, good luck to you both as Aranesp seems to be working for you. My husband was on it about 2 years ago - lasted about 3 months. It had absolutely no effect on him, so he went straight to blood transfusions, which he's been on ever since. For the most part, he has received 2 pints every week and they're lucky to keep is red (HGB) count in the 8's. 3 weeks ago he said 'screw this' & tried taking only 1 pint. That lasted for 3 weeks; he took 2 this past Wednesday because his count dropped down in the 7's. So basically now it's just a game. We don't really discuss it much anymore, just take advantage of good days & go out to eat or visit the kids. His world has gotten smaller, but I try to liven him up and yes, easily drive him nuts, but at least I keep his blood boiling!
Mike, love reading your posts. Just keep hanging in there. Too few know where this illness takes you; you just have to make each day count. I'm as healthy as a horse, but tell my husband I could get hit by a mack truck coming home some day & then what? He said he'd kick my you-know-what down the hill if I let that happen. Ah, love!!!!

Hello all,

I too am glad to see everyone posting. We had a little lull there.

Aussie Rachel - i agree whole heartedly that you will be one of the lucky ones. Do think positive as it helps to have a good outlook. Glad the naseau is better.

Birdmom - sorry to hear about your brother-in-law.

Poshshorty - how was the blood drive/

I am managing to hold at 12.4 on the hemoglobin. White blood count is still up but that is someehat expected with the infection I had. Hope to stay a little heathier now that my round of antibiotics is done.

As always, continue to live every day to its fullest.

LaDawn

turn out was kind of small for our small town. we managed to get 17 units. I knew it would be low though on a friday afternoon. but more than we had right? lol

Well, I'm sure you (Poshshorty) wished for more blood--you vampire you--but as you said, it's more than they had before. Every time I see a call for giving blood I want to respond. Then I remember! They don't want mine..............

Isn't it strange, Kittymom, how something can work for some folks but not for others? I'm very happy not to get to the blood transfusion stage, but I know that it will come some day, & I will have to make decisions.

I also loved your humor about being hit by a Mack truck. My husband & I have a long-running joke about who will be first to go, & the truck always enters the scenario as "Man proposes, but God disposes."

LaDawn, 12.5 is great! I'll never see 12 again, I guess, but at least I'm int he low 10s, not the 9s.

Okay, you guys, I lived life to the fullest today & gambled at two casinos. So I lost my butt, but I enjoyed my day away from thinking about other crappy things. Sigh. Back to the grind tomorrow.

Hang in, Leaky Boat Crew. Cap'n Chris is watching.

I have been lurking and reading on this board for a couple of weeks and you are a funny bunch.
Birdmom you have made me laugh out many times!

I have only just been diagnosed about three weeks ago, I think. My platelets and WBC are normal although my WBC was quite low the other day and I almost had a heart attack until my doctor told me that when you have transfusions sometimes it dilutes the result. They will watch it-of course.
Right now my hg is holding between 7.3-8.3 and I am transfusion dependent. I have started Revlimid (last night actually) on a very small dose 5mg every other night. The doctors will slowly increase the dosage as I show a good tolerance. I am on the track for BMT as I am only 36.
This board is fabulous and without it I would have felt so alone, so thank you all and Birdmom, keep making me laugh!

You got it, Jeanine......everyone shares symptoms, treatments, suggestions.......then find the positive. I swear, sometimes I feel like Pollyana (remember that story?) - finding the good in everything. Birdmom is our resident humorist so don't miss anything she says!!!

Jeanine, welcome to our leaky boat. I'm glad you and Kittymom like my humor. Better to laugh than cry, eh?

You have much company here, as we have several young sprouts who are candidates for BMT.

Thanks, LaDawn, regarding my bro-in-law. It was shocking how fast the leukemia struck him down. My sis seems to be coming along well, but has many decisions yet to make. At least she knows where she stands now--alone, lol!

Hi Birdmom! And all the Leaky Crew... sorry I havent been around much. Am trying to put my health on the shelf and get on with things but I will never forget u. Of course MDS is always in the back of my mind. I have a cold at the moment and my platelets always seem to take a dive when that happens. My hospital appointment is on Friday and I suspect they will come up by then! Isn't that right?! Hoping.

Thanks Sharon, I'm sure Captain Chris is watching. I have missed u all actually. Glad everyone is moving along ok... hopefully. I do think of u all. My life is getting a little less overwhelming and things are slowly falling into place. I have been caring for the 8 little Labradoodle puppies and loving it so much. They are just TOO cute. They follow me everywhere and like chewing on my gumboots (when they are on me). But I have to say goodbye to them soon, because they are being sold... and another 2 litters are on the way! So we will be very busy soon. That will make possibly 20 pups! Yikes.

It is so nice to have something else to think about. I am enjoying my animals studies course. And the dairy cow is the most interesting beast I have come across. Wish I had 4 stomachs! 1 for appetiser, 1 for main, and 2 for dessert!

Take care everyone. Stay happy. Thanks for listening to my ramble.

xoxo Jules

I went in for testing and Aranesp on Friday (2 1/2 weeks afetr last appointment). My Hematocrit went up, but still under 30, so I got my usual dose. That means my body is again responding to the Aranesp and producing more red cells. Glitch was the nurse had trouble with my veins, even though as usual I warned her about rolling, and the vein was mangled. When I took off the bandage at the blood draw site, there was the purple mark. My platelets are back down to 112 or so, so I guess there is a small clotting problem as well.. [my right armpit veins are completely bad, and it looks like the left will follow at this rate]. Soon it will be butterfly on the back of the hand for blood tests...

I forgot to mention I am about to leave for outpatient cataract surgery.
Tomorrow is followup consult on the cataract surgery, and Wednesday is my date with the Dana Farber MDS specialist and transplant specialist. I need to remember to ask them for whether I need another Bone Marrow test for definitive classification and staging, and how quickly I'll have to decide things...