Dear Poshshorty,

I'm so sorry to hear this news. After all the transfusions, it's hard to believe his counts are that low. Is he hydrated? If they had to give him fluids for hydration, that would cause his cell counts to be lower. It's a double-edged sword... Praying for you and your father. love, Sherry

Sherry last week he was dehydrated but they didn't give him fluids. told him to drink more water. I really appreciate you and everyone here. The support is wonderful!

Posh, how is Dad doing now, any improvement?

Saw the vampire yesterday, & my Hgb is only a little lower than last time. As long as I can hang in the low 10s, I'm happy.

no improvement hon. he sees the dr again though tuesday which is 2 weeks from last time instead of monthly

Hi Leaky Boat Crew -

Poshshorty - Hope things are looking up for your dad. We are all here pulling for him.

Update on Lou:....don't remember where I left off...so I'll start with last Friday...saw the cardiologist who scheduled Lou for an angiogram on Monday (10/25)...then saw his oncologist who didn't like his 8.9 hemaglobin...so he scheduled him to receive 2 units of blood on Saturday. On Monday, his hemaglobin was on 9.9....disappointing to get only 1 point after 2 units of blood.

Good news is...his angiogram results were good....no surgeries on tap in the near future. Doc said his valve was moderately damaged not severely - this was good news. No bypass...his heart is functioning ok for now.

Monday nite he had trouble breathing. Really difficult breathing when he was in bed so he sat up much of the night. Saw the oncologist on Tuesday...who said his lungs sounded ok. Tried to follow up with cardiologist today...but they had no openings and suggested urgent care.

Urgent Care doc freaked out with his low hemoglobin. They drew blood and some heart markers were elevated. Chest xray wasn't clear but wasn't bad. Doctor conferred with cardologist, they decided to give him an injection of laycicks (sp?) and he's to follow up at the Heart Center tomorrow. He's peeing up a storm!

Wow - we're having fun up here in Oregon.

Gayle & Lou

Poshshorty
My thoughts and prayers are with you and your dad. I remember feeling that sense of hopelessness when my brother was ill. I didnt feel like I had the right to be happy when he was struggling with his illness. All my family could do for Michael was to visit and phone often. He appreciated the visits and would tell me of all the things I ought to do in my lifetime. You sound like youre doing everything you can to look after your dad. Keep strong.

Gayle & Lou
Im sorry to hear Lou that youre having such a tough time. Looking on the positive side it was good that you only needed one unit of blood when you expected to have two. On the Tuesday at Urgent Care had his Hb dropped to a point that he required additional units of blood?

Birdmom
Its great to hear that your Hb is not decreasing. I couldnt remember what type of MDS you had, but you should consider Revlimid. I know it works for other types of MDS other than del 5q.

Just a quick update.....
I had my specialist appointment today and received great news that the Revlimid has really started to improve my Hb. It was 90 when I first started the chemo, and it is now an amazing 124. The specialist was impressed by this increase. On the first cycle the platelets dropped to 91, but this cycle they increased to 106. I've had no change to my white cell and neutrophil count. They are relatively low and I still need to watch out for infections. It's good to feel well again. I start my third cycle of Revlimid on Saturday.

Best wishes to all.

Rachael

Rachael thank you. I hate this road we are all traveling. My wish is for a cure!

My rbc was in the upper 8's last week which was a suprise as it had been 5 weeks since last transfusion. WB was down to 1 and anc at 200. I had 2 units on thursday so red count on monday came up to 10.3 which was as high as it's been and the WB count came up to 1.5 and ance to 600 by Monday when I started this round of chemo. The transfuson seems to have made the fatigue from chemo a bit better until today (the train and truck did the run over thing again LOL).

Posh we all hate this path. I watch my wife while she supports me and her strength is amazing. Every once in awhile she get "red head" mad at some small little thing and I can see the stress of me, her sister passing, our 41 yr old daughter having had a second accident and having to move in temporarily along with life's unexpected things like auto repair expenses and a TV going out last night LOL.

I get mad as I can be when I see all we're going through, all the folks in the cheom centers and the junk they are going through and especially when I see the kids with leukimia or cancer. All we can do is get up with the Lord and each other every morning and do all we can to make that day all it can be.

Have a great weekend everyone. I tell the staff and nurses about you guys all the time and you should know you all are in their prayers as well.
God Bless
Mike

Mike thank you. and thanks for talking about us to your nurses and getting us extra prayers. I wish you well on this journey as well.

Hi, everybody! I watched this video last night and I thought it worth sharing it with you. It is somehow inspiring and it transmits a very positive vibe: http://www.cancereducation.com/mdsjourney/index.html

Best to all

Dads transfusion and platelets did nothing this week. He told me he won't be here much longer. He also asked us not to send him to a hospice facility. He knows his body has changed. In 2 weeks he had 7 blood and 2 plats. This is such a roller coaster ride I wish none of us were on.

Poshshorty,
My prayers are with you and your family!

Janet

Poshshorty....my prayers are with you and your family also. I just had a friend pass away with MDS. It's not easy to deal with this disease but I guess we need to trust in God and pray that we have a little longer on this earth. I pray for everyone also that has this disease and know that some day there will be a cure. Like Mikey said, we see the small children with leukemia and I feel blessed that I have seen my kids grow up and have had time with my grandchildren.
We fly to Texas this Sunday for my appt. at MD Anderson. My last transfusion was Sept. 13 and I had my blood checked here in Illinois a week ago and it was 9.4, so I feel like I need a transfusion about every 3 months. I am electing to have a transfusion when I am at MD Anderson this visit, even though I might not desperately need it, because Jerry and I are flying to Ireland Nov. 17 and I want to feel good when we go. I have had an upper respiratory infection for the last month with an awful cough. I am hoping it is about to end though because the cough has gotten much better. In the middle of the upper respiratory, I also caught a cold. It scares me when this happens because I think I am not able to fight off infection now and the disease is progressing. Then I start feeling better and hearing that a lot of people have this respiratory problem and it's also taking them a month to get over it. My white blood count and platelets are normal so I am doing well. It is such a blessing to have the support of friends and family to help us through this time. I also have CMML which is a subtype of MDS so I am especially blessed with this awful disease. I hope you all have a great week and I will try to post more often from now on. My prayers are for all of you.

Sherry...did you get my last email? I hope I have the right address.

Susan I am so sorry to hear about your friend's passing. Did they have an infection or what? I am grasping here with my dad. today his plts are 10.0 they had him go straight to the hospital to get plts and blood tomorrow. At first the dr didn't think Dad was going down so fast until she say his results. Dad is very weak anymore with lots of hip soreness as he calls it.