Have not seen any posts from Becky Jean. Is she OK?

Hello everyone, I just joined your group. I've been reading your posts for several months and i feel like I know some of you.I've had MDS for 5 years. Had so many transfusions that i've lost count. Usually every 3 to 4 weeks. They want me to go ahead with a bone marrow transplant but I have a vary rare DNA and the match they found me wasn't a very good one. I want to wait to see if anything better comes up in the registry but they think my MDS is progressing and are afraid I will wait too long. So i'm having a bone marrow biopsy next week and if things are worse then I guess I'll have to proceed with the transplant. I'm very scared and don't know how much I can take of all that chemo and radiation. I have a lot of stomache problems to begin with and don't know how much more I will be able to stand.I guess I just needed someone to talk to. I feel very alone because nobody has ever heard of MDS.

hi gang! I just wanted to check in and see how everyone is doing. I haven't been on too much lately although I do check in weekly at the least. I stay so busy with my little granddaughter and just getting over pneumonia! yuck! I want to wish you all the Merriest of Christmas's! much love to you all!

Hi all,
It's been quite a while since I've posted. I completed 3 cycles of Revlimid and had a BMB in late Oct. it basically showed no change. So doc said next step in the clinical trial would be to take Revlimid daily along with getting shots of Vidaza for 5 days in a row. Started this on Nov 5. Had terrible reaction and by day 10 of cycle had to stop.
Continued going in weekly for blood counts. WBC, neutrophil, and platelets have gone down. Was supposed to resume new cycle on Dec. 3 but platelets were 40 so doc said we should wait another week.
So now I should start next Monday if counts are ok. I'm becoming apprehensive and discouraged as things do not seem to be going as planned.
However I am trying to not let it get to me. I am thankful for all the blessings I have and with God's help I know I can get through whatever lies ahead.
By the way - gwgmti - my "handle" for this discussion group means - God will get me through it. I do believe that and I pray that all of you will look to Him for strength and comfort too.

Sandy

Hi LisaLynn...I know where you are coming from with the transplant. I am going on 4 years with MDS and will probably have to make that decision in the future. Where will you have it done? Do you mind if I asks our age? I am 63 so the clock is ticking. It is a scary decision, but they have come so far with the transplant process. Good luck to you and keep us informed. It helps us all.

Hey there everyone

Hello all,
Lisa Lynn it's ok to be scared of this junk. I've had it for over 4 years now. Due to previous health problems and my age I'm not a candidate for the BMT. All I can say is, like everything else in life, there are many bumps in the roade we travel. Keep your hand in the Lord's and make the most out of each day.

Sharon I obviously don't like the low counts either. I had a mild cold the week before last with fever and all. On Monday my wbc was .8 which is scary but it along with the platelets came up by the next day when I had the transfusion labs. The docs think they dropped because of the cold and fever. Fought through that then on Tues did something that caused back spasms and some serious ugly pain. Went to the ER Sat morning and have been on muscle relaxer and mild pain pills since. It seems to have improved some today so am hoping it will continue going in the right direction.

You all take good care of yourselves. God Bless and have a great week.

Mike

SusanB4, I'm 46 years old and I will have my bone marrow transplant at Cleveland Clinic. I just had a bone marrow biopsy and I'm waiting on the results. I'm hoping my MDS hasn't progressed so I can wait to see if a better match comes along. I don't know if I'm the only one, but I hate the drill they use for the biopsy. Yes I know it's faster but I still hate it. Just had to say that.

mikeytj, I guess I'm tired of the bumps in the road. Every time I tell someone what I have, they have no idea what it is. People don't want any part of getting on the bone marrow donor registry and thats the only way of any hope of finding a decent match. I'm very happy to have all of you to talk to. I'll keep praying.

It's too bad that it is still referred to as a bone marrow transplant instead of a stem cell transplant. I've gotten to know my unrelated donor pretty well and although his side of the journey wasn't especially pleasant it was nothing like removal of large almonds of donor marrow.
I think many people would be more willing to join if they knew that.
Also the regestry isn't a known thing. I never knew about it.

Merry Christmas, everyone.

Yes, I know it may not be too merry for some. I'm one of the lucky ones, still stable at 8.5 Hgb.

Even better, my belly problems are nearly gone. After a CT scan, my reg Dr put me on a gluten-free diet. I've been on it for 2 weeks now, & I feel great. Sure hope it lasts, altho having to go GF is expensive & a nuisance.

Millie, still no word from Becky Jean. Not a good sign!

Lisa Lynn, you have one big plus with this disease. You are not too old for a xplant, so hang in there! Not an option for us older folk.

Posh, I'm so glad you check in with us. You're part of our crew & always will be.

Sandy, I'm so happy to know at last what your handle means. Good luck with your trial.

Susan, we must have been diagnosed about the same time. I'm reminded once again how lucky I am to be in a low-risk group.

Mike, glad you wrote. I didn't realize that laying around on the couch could be so dangerous, lol! Hope you're more comfortable now.

Jon, I didn't know that the xplant is actually stem cells. Could you 'splain a little bit more about the donor's part? Sharon

Thanks for all the updates. I'm really concerned about Becky Jean. Wish she would check in.

Merry Christmas and a very Happy NewYear. It's too late for Joe but I still pray for a cure for all of you.

Hi Sharon
The donor checks in and is given large doses of neutrophil stimulants and other drugs. His blood is pumped through some gizmos and the end product is a bag of stem cells that looks like a larger bag of the oh so familiar reds. The patient has had all of his blood producing cels killed off and if all goes well the bone marrow is replaced with donor cels.
The donor can have some aches and pains from the process, which I think takes four days, but nothing like the process of removing large amounts of marrow from his bones.
They still do some actual marrow transplants, but most of the time it is now Stem Cells from the donor.
Best wishes to all.
Jon

Just wanted to wish everyone a Healthy and Happy New Year!!

I sure enjoyed having all the family here for the holidays but I found myself tiring out by the end of the holiday season. The last couple of days I have fallen asleep by 9:30. Guess my body is telling me something. I have a return appt with my oncologist on the 15th. Last time there he said if my counts continued to drop then he would repeat a bone marrow biopsy. Hoping my counts have gone up some.
Hope everyone is doing good and survived the holidays!
Take care,
Janet

I hope you all had wonderful Holidays! I am missing Dad really bad this year for some reason. It hasn't been this bad before. Maybe the shock is finally wearing off. I love you all and wish for a cure!

Elaine