Update and upcoming BMT

[newfintexas]

Hi Greg, Beth and Linda - hope you guys are all doing fine!! Haven't been here in a bit -

so many changes in hubby's treatment etc in the past few weeks, feel like we are on a roller coaster. He's had 4 rounds of dacogen so far - sept being the last one. Doctor has stopped them...his liver is being affected. Had a second bone marrow biopsy - the bone marrow is pretty much destroyed, he is not making any red cells or platelets at all now..white cells seem to have rebounded but they are very very high constantly. On a good note, blasts are down from 8% to 2% although I am sure some of the reason is due to marrow has stopped producing cells altogether.

We had been looking at a bmt in january but now with the changes we are going to transplant on Nov 5 - only found out yesterday with him being admitted on the 29th for the hard chemo. Scary but dh is staying positive saying worrying will not get us anywhere and we can only do everything possible and pray that we will come out on the other side without all this mess. We were so lucky, actually found two perfect matches - what kind of miracle is that?!?!?! So one will be kept on standby.

He is only 57 and it's hard to believe we only found out he had MDS in July...so much has happened, feels more like 3 years instead of 3 months.

Greg the wheatgrass seems to be working, iron has not been an issue even with transfusions of either red cells or platelets being every few days. Thank you so much for letting us know. By the way, one of the techs really believes in sunflower seeds for platelets although since hubby is not producing any it's a mute point. But maybe someone out there will luck out by trying it.

Is there anyone else that has gone through recently or going to go through a BMT soon? Would like to get thoughts, scary when you feel like you are alone going through this. Our family is not near us, so it's just the two of us although our grandchildren 3 and 5 along with their mom and dad are coming next week from Canada to have a few days with us before Papaw goes into the hospital. Really looking forward to that. We are used to seeing them every few months but know that with the BMT it will probably be much longer this time, so we are so grateful they are able to make the trip on such short notice.

Good luck to everyone out there! Keep up the fight! and stay in touch, this is a great forum. Laura

[Lori Patrick]

Laura, I will keep you and your husband in my prayers. I kept a journal on caringbridge (address shown in my signature). None of it is fun, however I am 1 year and 10 months post transplant and I am alive and functioning. Just take one day at a time. God led me (and my husband) through the entire process and I suppose he has other things in mind for me now! Hang in there. Lori

[Neil Cuadra]

Laura,

Good luck. I'm sure the schedule seems rushed but when you're going to transplant the sooner you begin the better. That's what happened to us too. They scheduled my wife's BMT as soon as they could after the decision was made.

Has the treatment center given you information about what to expect before, during, and after the transplant? We got a giant notebook full of information from the hospital, so along with what we learned from other patients we had a fairly good idea what would be involved in the weeks ahead.

Like any roller coaster the ride can be unpredictable, but good planning helps in practical ways and can also make you feel more in control and less fearful.

Our transplant story is here.

[mausmish]

Laura,

Best wishes to you both. I had my BMT 11/30/10 - can hardly believe it's nearly two years ago. I've done extremely well and am close to your husband's age. Reading the stories of others who went before is what helped us the most so we've kept a blog to update friends and family and to tell others of our personal experience. The link is in my signature below.

Karen

[newfintexas]

Hi Karen, Neil and Lori, ..THANKS so much for replying - you are all such an inspiration. Loved reading the blogs. ummm can someone tell me how to start one? Hubby's diagnosis happened so fast, and been such a hilly ride ever since, I want to hopefully keep a running log of it all and maybe in some way pay it forward for all the help we have received along the way.

Karen, I'm so sorry that you are dealing with so much more right now. Praying that you will be good as new soon or sooner.

I have to say, am surprised that all three of you are so close in age to us, what we have seen at the hospital - with the exception of one fellow who has gone through a bmt with his own cells, mds returned and now looking at bmt with donor - everyone else we have seen have been at least 20 years our senior, but from visiting here, although they say it's average age is older then hubby, there sure are a lot of younger people going through this.

I hope you don't mind that I have put you on my buddy list (still too new to really know what to do with that list haha but don't want to lose contact so I can keep up on your blogs etc)..I want to be here to read how you are all continuing to get better and better.

We have gotten a ton of info on the whole process of bmt as well as I received some booklets from bethematch.org which details each period, prior, 3 months out, 6 months, year and 18 months along with a bunch for the caregiver me. Between that and being here it is making it all a lot easier to take and understand.

Thanks again, looking forward to following your journey.
Laura

[MDSPerth]

Laura, I have just noticed your posts, and you seem to be in a similar situation to us. Paul was diagnosed, seemingly as a well man, at age 61 in July 2012 and the last few months have been a rollercoaster ride (to say the least) of emotions and doctors visits. Like your hubby, Paul is to head down the transplant path, sooner rather than later if they can find a MUD (sibblings not a match).

Wishing you both all the very best for the approaching transplant and will watch for your posts with great interest for progress.

Thoughts are with you.

[mausmish]

Thanks, Laura. Probably the easiest way to blog is through Caring Bridge ((http://www.caringbridge.org/). Michael and I have both found blogging very therapeutic. We often go back and reread and are amazed how far we've traveled on this journey. It has also been a helpful historical record for discussions with my current doctors. They have all my medical records but the personal information we provide adds quality to the information. And we're very happy to give something back to the community who have given us so much.