Just an FYI I stll can't get the site to email me the posts. I've sent an email to them with no results so don't know what approach to take next. If anyone has had the same issue and fixed it please let me know.

Later
Mike

I used to get the posts but not anymore. Have no idea why.

I completed my second cycle of Vidaza on Friday, March 2nd. Count were actually up the following Monday. But then yesterday (second Monday)when I had labs done they were down,including platelets.
I was scheduled for two units of blood today but had to abort due to a reaction. I fell asleep after the second unit started and when I woke up about 30 minutes later my body was a solid mass of red welts.
It took a couple hours to control the itching with Benadryl and then they let me go home. Hope this was my one chance in 100, don't wish to go through this again.
Tecia, how is Mom doing.
We are having beautiful weather in Maryland, 80 degrees. Wish I had the energy to walk but I'm lucky if I make it to the mailbox.
Stay well everyone. Hugs!

Becky I hope you feel better. Sorry to hear about the rash. Are you going to try another transfusion?
I want to thank you for the post on caring bridge. That was very thoughtful of you. As you read I am in for chemo. And then if I go in remission TCT. Hope everyone is doing better soon. My Counts have already taken A dive after not 24 hours of chemo. I guess that is why I am in here for 4 weeks.
I am tired and have killer of a headache I plan to lay down.
Thinking of everyone Cat

Cat: I'll have blood test on Monday to check HGB. I'm sure I'll need more transfusions as I go along and I'm told it may not happen again. I just need to be monitored more carefully. If I hadn't fallen asleep I'm sure I would have noticed it sooner. The other thing is I'm told they can give you Benadryl first but that doesn't make sense to me.

I'm really sorry you are having to go through all this but as all of us know we don't have much in the way of options. You are in my thoughts and prayers. Hope your headache is better.
Hugs!

Hey everyone just checking in mom is having good and bad days just continue to keep us in prayer

Hi Everyone,

Mike - I also do not get e-mails telling me about posts. Don't know how to fix it.

I saw my doctor yesterday. My counts were slightly down. I told her how tired I had been, taking a lot of naps, and that I had to quit tennis. For most of February I had shortness of breath and at night would wake up finding that I was breathing heavily and had some pressure on my chest. But actually for the last week I have been feeling much better.

She said with my HGB at 11.3, I shouldn't be feeling that badly and that she would send a letter to my primary care doc saying I should have a stress test that it might be my heart. I don't think so but I guess I'll do it to rule that out.

Do any of you remember feeling so bad even though your HGB was over 11? Twice I had a 10.9 and 10.8 but then it went back over 11. So my body is still able to bring my counts up without any help - a really good thing!

May all of you have a great weekend. Take care.

Sandy

Mike, I tried this out first, & it works fine. Click My Account (on the left). You will see several choices. I chose daily emails for the test. I turned it back off to no emails because I usually check in once a day.

Sandy, I didn't have the symptoms you describe until I hit the low 9s (Hgb), so I can see why your Dr is looking elsewhere for clues. I will say that when I'm going to sleep, sometimes I feel like I can't get enough oxygen, why, I dunno. Then I deliberately take deep breaths.

I hope everyone is doing as well as can be expected. A belated Happy St Pat's Day from an Irish girl who can prove it!

We had snow overnite & earlier today. It's so heavy & wet that it's breaking trees (our beautiful blossoming pear tree lost all but one puny branch. No damage to the house, at least, but our lamp post is a goner. We may get more later.

I was supposed to go to Nevada & return today. Chickened out, thank goodness, & only got as far as Sacramento.

My own count (from last Tues) is hanging in at 9.0. I see my oncol at the end of the month.

Hi all, wishing you all miracles in your treatment! I tried to give blood twice in the last 2 weeks. I'm determined to do it for all of you and in memory of Mom. My count was 12.4 so they wouldn't let me give, but it was better this week so I got to give a partial pint.

Birdmom, you look great! Love the picture. You too Sandra, I'm so glad your journey is going well.

I'm really missing Mom right now, but the flowers in the yard are so beautiful and there's a wonderful robin that has been visiting me ever since she left. Best to all of you! Cindi

Hello All:
Blood counts were up today due to the transfusion last Tuesday, despite having to abort the second unit half way through,HGB went from 8.1 to 11. I'm really on a "hi". I start Cycle 3 of Vidaza next Monday so starting with the HGB up will be a benefit, I'm sure.

Cindi, I know this is hard for you going through Moms belongings. I'm trying to do some of that now, after 57 years we have so much, but at least I can give some of the clothes I don't wear to a thrift store that someone else may benefit from them. My daughter is coming in May and I want her to list the things she wants so that I don't put them in a yard sale. I hope the Robin continues to visit you.
Hugs to all.

Becky Jean I am glad to hear your counts are up. When do you have BMB again? After the next round of Vidaza? Keep us posted.
Cat

Cat, glad to see you are up to posting. I begin 3 cycle Monday, March 26th, BMB will be after the 4th Cycle. Will schedule sometime in May.
Take care, hang in there, I know you can do it. Hugs to all.

Hi Birdmon!
I am also a new member and so glad to find this site. I am getting ready to leave work (full-time) to go get my chemo treatment. I take Vidaza five days in a row once a month.

I was told I had some blood count problems in 2007 and ignored it. I finally went to a hematologist in 2010 and have been treating since. He gives me 250 mg of B6 daily, tried the Aranesp shots which didn't work. I have had monthly blood transfusions from 10/10 to 7/11 (my last for now). So far, the Vidaza has been bringing up my counts. It does make me a little nauseous.

Hello MRI:
Welcome to the group. How long have you been on Vidaza. I start Cycle 3 on Monday and so far no nausea. They give me Aloxi first on Monday, Wed, & Friday to take care of the nausea problem in advance.

Welcome, mri!

I'm not exactly a new member any more, since my original post (at the top) was over 3 years ago. We have been dubbed the Leaky Boat Crew.

Some of our crew are caregivers, some are in low-risk groups (like me), and others are on chemo and blood transfusions. You should be able to compare notes with several of the crew.

You spoke of nausea. Do they give you something beforehand, as Becky Jean gets? If not, suggest it to your Dr.

Cat, glad to see you posting. That's a good sign, right?

Sandy, it's interesting that your Hgb is relatively high in light of your symptoms. I recall another crew member who experienced the same thing. I'd guess that there is another mechanism at work that our Drs don't seem to fully understand.

Tecia, how's Mom? And Cindi, why is your count low? You'd better have a darned good reason for that, lol! Sharon