Sandy we are neighbors... I live on the borderline of Bartlett and Hanover Park. The best place to say is by the Elgin-Ohara highway. I had friends out in Cary years ago. Haven't been out your way in a long time though. Do you have a specialists in MDS? I keep asking everyone that because I feel personally it is so important to have one. If we have a heart problem we don't go to a foot doctor. I know it would be a hike for you but there are a couple here in Chicago. I go to one and have my Hematologist/oncologist close to home but I also see a doctor Altman at Northwest Medical Center in downtown Chicago. She is the one who ultimately is making the discussions on what we are doing. It isn't like my other doctors isn't good, he is, I wanted someone who knows the in and outs of this disease.
Your Wbc count is very low. Did he say anything about it? How are your other white counts?
Please keep us informed. Our thoughts an prayers are with you.
Cat

Sandi,
The doctor didn't say 62 was to old my insurance company is the one questioning if I am healthy enough for a Bmt. I am afraid they are going to try and wiggle out of paying for one. I am healthy except for this desease. The doctor says I am a perfect candidate for one. They have already typed me and we are waiting for a match. My sister isn't a match and I don't have any other siblings. So it is a waiting game for me. My Mds came on so quick I am worried it will turn in to AML. I am a high risk MDS. I need a match. I am sorry if I keep repeating myself. But I go in Wed. for the 6 test the insurance company is requesting I have. Everyone pray that they don't reject me on something small thing.
Cat

Welcome to our leaky boat, Sandy. I agree with BJ, Looks like you'll be on shots before too long. Altho my Hgb has dropped, it's a slow process, & most of the time I feel pretty good. Your platelet count sounds very low to me. (Mine has always been in the normal range.)

I met to answer and say Sandra when I talked about being 62..
Cat

Thanks for all the welcoming comments. It really does help to know you're not alone and there are others that understand how you feel.

Becky Jean & Birdmom - You're right about the Aranesp. Doc said when my HGB gets to 10 and under that's what she will start me on.

Cat - We lived in Hanover Park back in 1971-74. We now have lived in Cary for 11 years. Actually I am seeing Dr. Shammo (she is an MDS specialist) at Rush University Medical Center. I didn't really like my original hematologist/oncologist and on advice from a nurse at our church tried to see one of his partners instead. I only saw the new doc once and he referred me to Dr Shammo. I think primarily because the first BMB only showed suspicious of MDS. I don't like driving so far but I really do like Dr Shammo. My next visit is Jan 26 but it's just to test my blood and I won't see her. Then I will see her 6 weeks after that. I know my WBC was quite low but it seems to be the one count that varies the most - can be mid 2's then goes up to 4 every once in a while. What other white counts are there?

Thanks to all of you for welcoming me into the leaky boat. I hope you don't mind but I'm full of questions and will be asking a lot about your experiences. Hope you've all had a good weekend.
Sandy

Sandy
I am glad I see a doctor in Hoffman Estates for my chemo and blood tests. I have to go in twce a week for my blood test per Doctor Altman. SHe wants to keep a close eye o my blood work. My numbers hold pretty steady at beig bad. I am glad Altman agrees to have me just do that with him and see her on occasions It is a long drive for me but It is twice as long for you to see the specialist.
Cat

Cat,
I guess I'll have to wait and see when I do start treatments how I feel about driving so far. Right now 6 weeks apart is ok but when it gets more often I might think otherwise.
Sandy

Hey there all,

I've been busy with the holidays and just recieved Sandy's original post but have not recieved any others for awhile so sorry about not being around.

Birdmom could you check and see why I'm not getting the emails from the posts anymore please?

Sandi - welcom to the leaky boat crew. It's a great bunch with most in various phases of this junk so there's lots of support, love and prayers out here.

The Leukimia Society has a new presentation on their site at http://www.cancereducation.com/cancersyspagesnb/a/lls/lls1104new/pres2.html Also you can get it written/pdf format at http://www.cancereducation.com/cancersyspagesnb/a/lls/lls1104new/transcript.pdf . They also have a wonderful progam of related medical expense reimbursments for premiums, copays etc.

Just an update. I'm in the sorta steady arena on all but the platelets. WBC 1.9 which is typically 1.5 and drops the two weeks after chemo. RBC 2.4 with HGB at 8.2 (normally in the 7 range often so am transfusion dependent usuall every two weeks but sometimes can sneak it out to three) and the ole plateletes are now at 21 and after chemo have dropped to 11 but usally are in the 20 to 30 range. Dacogen every 5 weeks and red blood fill ups every two and am hanging in there pretty good. It's been almost 3 1/2 years now and 135 chemo treatments so all is going well. Of course we would like to see it head up but we'll see.

In that Leukimia article there were some encouraging comments about BMT and Umbilical cord blood sucess's along with having a better success rate at finding matches.

It's been awhile so long this time. Everyone get up each day, let your feet hit the floor and ask the Lord what's next then go live it with all you have. Keep smiles going cause there's a lot of folks out there that need them realy bad.

Mike

I hope we can figure out why the email's are not coming because I miss all of you

Mike: So good to hear from you and that you continue to hang in there.
I can't remember the last time I received an update regarding postings.
Not sure what is going on with the site. I just check in every now and then. Thanks for the update.

Thank you Mike for those websites! They were very informative!
Glad to see you back on. You always have such encouraging words for everyone even with your counts so low. Thank you for that! Somedays we all need encouragement and what better place to get it then right here where everyone can do just that. Each of us is going through something a little different than the other and sharing our experiences really help.
Hope everybody is doing good!
Me, I am finally kicking the sinus infection that I have been battling with since Thanksgiving. Starting to feel normal again if I know what normal is. Although my family doctor has me using an inhaler twice a day to help with my shortness of breath. It does help some.
Take care & God Bless Everybody!
Janet

Mike, I can't tell you how relieved I am to hear from you. We've all worried about you, as you never go this long without posting. None of us knew how to get in touch with you, either.

I don't want to receive emails about posts, so mine is turned off, but you go to My Accounts to turn it on.

I've started my third round of antibiotics to try to rid myself of this long-lasting bronchitis. I don't feel bad, but I just keep producing more junk.

We're off on a grandbaby trip today. It's been four months since we've seen her, so I expect big changes. I'm sure she won't remember us, so Grandma & Grandpa will have to bond all over again.

I'll be checking in while I'm away.

Sharon

So glad to hear from Mike..we have all been so worried. I think we all have relyed on his posts quite often. Blessings to all of the crew. Pat

Hey all,

Thanks so very much for the kind words, your worries and concerns about me. It appears that something with the service has gone whacko and I don't know who to contact. With the chemo and related fog (my kids say I've been that way all my life...hmmm), the transfusions every two weeks, the holidays and gang from out of town in and out a few times I guess it just didn't click even when I wondered why I'd not heard anything. Not bright enough to come out and check LOL.

We all have our own valleys we walk through but putting it all in the Lords hands each day let's Him shine a really big light so that we not only see our way but also see all the beauty around us.

Keep on keeping on. Have some fun today and make someone smile. Two folks smiling at the same time is really cool.

God Bless everyone and have a great week and weekend. I missed you all so will try to check out here often.

Mike

MIke soooooooooo good to see you again! whew! had me scared there for awhile! glad you were spending time with family and friends! luv ya dude! :) just had to say it!

Hi mike I am Cat. It is nice to meet you...

Now this is for everyone. I need to complain. I just had a transfusion on the 4th of this month. My Hgb was up to 8.8 Monday the 9th and today it is down to 8.1. I feel tired again. I feel like I am getting no where. I saw my MDS specialist Wed and I have to have Bmb next Tuesday. We have to see if the Vidaza is working. My Wbc should be going up if it is working and nothing is happening. It is holding steady. Yesterday I sat on the floor and couldn't get up... I wasn't strong enough. I had to call my husband to pull me up off the floor. I have always been very physical and now ... I just hate this darn disease.
The specialist said if the Vidaza isn't working we had to look at other opinions. I was given about 4 different ones so I won't even go into them. Once we have the results back we will know which way to go. I just hope my disease hasn't progressed.
Okay thanks for listening I just needed to complain to people whom would understand how frustrating this all can be for us.
Hope this all makes sense because I was all over the place.
Hope everyone feels half way decent and are having a good day...
Cat