Hello all,

I have not posted in a while but have been reading the posts. My counts are remaining stable at the moment and my hemoglobin is holding at 12.4 for the past 10 weeks.

Posh, I am keeping you and your Dad in my prayers daily. You are a great support to your Dad. Stay strong and just take each day as it comes.

Welcome to the new members. You will find a wealth of information and support here. Don't hesitate to ask questions or sometimes to vent frustrations.

LaDawn

I'm so pleased to see such lengthy & informative replies from our crew. I've been away, first visit to see our new granddaughter, & I always come back & check the posts with some trepidation. But everyone is hanging in.

I can't remember if I mentioned that my last Hgb was terrific (for me, at least), but I'm preparing myself for the usual drop when I get my blood checked tomorrow.

Glad to hear from you, Gayle, altho I could wish for better news. I had a feeling that CHF was in the picture when you wrote previously.

Posh, I gather your dad is still hanging in there?

Hello Leaky Boat Crew,

I hope this message finds you all feeling stronger for the holidays so you can spend some quality time with family and friends.

Lou is moving into uncharted waters and we're hoping for some feedback from anyone with experience with Dacogen. The doctor says the Procrit and Neupogen are no longer doing their jobs so he's opting to move Lou into a chemotherapy regiment.

The plan is IV Dacogen for 7 days and then recouping for 3 weeks. Then another 7 days of treatment...not sure how long he's planning for this routine to run but we're both aprehensive of what lies ahead. This may begin as early as Dec. 28.....

Good veins are becoming scarce so a "port" has been suggested. I hear it's a pretty easy surgical procedure and then hopefully injections and transfusions will be less troublesome.

So, Leaky Boat Crew, who of you out there has experience with Dacogen and are there any suggestions for weathering the side affects?

Lou says his taste buds must be malfunctioning because nothing tastes good and I seem to work very hard to get him to eat. Someone suggested Ensure drinks and while he likes them now, I'm sure his body needs more to fight with the strength our Captain Chris had. Chris set the bar high and we're trying to walk in his footsteps to battle MDS.

Be strong out there and try to put all your energy in to enjoying each and every day to the MAX.

Gayle (for Lou)

Dad is still hanging in. he spent a few days in the hospital due to a bleed after his port was put in but now all seems ok there. his platetets are horrible but he is loving that port. his veins got so bad and painful they could hardly stick him anymore. they are now having to type and cross match for his plts as the regular ones were only lasting a couple of days making him have to get them 2 times a week. all is ok for now.

Hey there Gayle and Lou,

Ok first I've been on Dacogen for 2 1/2 years now (had my 95th infusion a couple of weeks ago). It's been a long term extension for me but there are folks that have very successfull results in turning things around somewhat as well. The first thing they give you is a small bag of anti nausea medicine which takes about 15 minutes to go in. Then they start the dacogen which takes about an hour so start to finish is a bit less than 2 hours. The primary side effect for me is that it causes a lot of fatigue. You feel it the first day and by the end of the week it really is there. The fatigue is a lot like going without sleep for a day or so. Usually by the middle of the week after it starts to improve. I guess all folks are different but the other effects I "sometimes" get are clogging of the plumbing which I've not had to take any assistance pills but that goes away after a week or so. I've not had the sores in the mouth but my lips get tender and I don't wear the ole wooden teeth much - he he. The blood counts drop for the first couple of weeks then start building back up but that is supposed to happen. I've not had any loss of hair or other symptoms. For me my MDS is, like many if not all of us, a progressive thing but the Dacogen seems to have kept it from being in a big hurry. My normal levels are WBC in the mid to upper ones (they do drop lower at times with the dacogen -which is normal then come back up), rbc in the 8's and the plts drop down into the 20's and 30's then get back up to the 80's or 90's though sometimes less. If I go to have blood tests for anything else I have to tell the lab and the doc not to panic when they see my levels as those are, for me, normal. My doc told me he has an 85 yr old lady who has been on it for quite awhile also and tolerates it very well. Your blood counts (at least for me and my doc) determine the frequency or number of weeks in between because they like to have them back up as far as possible before the next round. They like your ANC to be in the 1500 range......LOL I've not seen 1500 for a year or more. Mine sits around 600 to 800 but often is much less in between treatments. Because the WBC is down they do tell you to be very careful of having a fever, for my doc it's anything above 100.5 to trigger a visit to him or if far enough above to the ER where they can load you up with anti biotics.

My normal schedule is infusions Mon-Fri, about every 5 weeks. The schedule is very flexible as for example I had the last one the first week of DEC and didn't want to hit the first of the year (after the holiday) rush from everyone putting thier off over Christmas, along with probably going to have the port put in the first week of Jan, so we scheduled the next one six weeks out. He ususally gives me two bone marrow tests a year and I'll get one on my next visit before the chemo.

Here they do the port throught the day surgery and take you into an operating room where they say it takes a couple of hours but can be used right away. Other than some tenderness the first few days they say it become much better than all the IV's going in. My viens are deep and they always have trouble getting into them so I've been out voted by all the nurses and Mama to get the port. LOL BTW I don't have any problems with my taste buds, lack of appetite, though I could use a little less "hunger" LOL.

Take time to research it on the Leukimia society sites and other places on the net where the specifics are discussed then make sure to write questions down to ask and be sure to get satisfied with the answers.

As for the source of the strength that Capn Chris had and any of us out here should and must have, it is in us making sure that this crud does not define who we are but that we in our resolve, our attitudes, our God as we choose to have a realtionship with Him, and our determination make the decisions on how we live our lives. Capn Chris not only fought the disease but I am convinced he outlasted it for quite awhile by living in optimism, smiles, determination that each day, each minute would be as good as he could possibly make it, in faith, and as all truley good folks do, he made sure to share it with all of us to give us the source to make our lives what we want vs some junk taking any life in our daily lives away from us. Right up until his last days, in spite of set backs and frustration, he continued in his happy optimistic ways. I suspect that the Lord has thanked him many times for the help that he gave us all and that both of them have shared how much love they both have for all of us.

The strength and quality of our lives does not come from how long we live but how we choose to live for how long we live. You know every Christmas my biggest wish is for yet another Christmas and I fully believe I will have it but I'm smart enough to know that it might not get here (whether it be due to MDS or something else entirely) so I take every visit with family, every birthday, every phone call, every minute with my wife and all the rest that goes on every day and make as much as I can out of it. I could go on for days about living positve but you get the point and you don't need some crudy disease for that lifestyle to make a huge difference in you. There's smiles and optimisim every where you go. Capn Chris let them be what made his life, just as I do and everyone here can also do by his example. It sure makes things a lot better than being glumpy and gloomy.

So Gayle tell Lou to go for it with all he has. My doc says there are a lot of folks on it that are doing quite well and are chugging along for a lot longer than many docs would have given them (the doc that gave me the results of my fist BMT only gave me 3 months tops to live). There is a lot worse stuff to be on and as I said there are folks that with this treatment have had very successfull results. If you have to be on something, dacogen is really not all that bad. Other than the fatigue your still very functional, and your cognitive abilities are not affected at all.

I hope this helps some. Kinda long but hard to say what you asked in one or two paragraphs. Put it all in the good Lord's hands and get after it with all you can. It is a blessing that we have dacogen available here for docs to use. It is my understanding in places like England and other parts of the world they can't get it due to the cost and that is a real shame due to the proven successes they have had with it.

If I don't get back in here I wish everyone a very merry and fantastic Christmas. Jesus is the reason for this here season and as a local insurance company puts on their TV ads "The offer still stands - John 3:16" God Bless everyone and Lou/Gayle you all hang in there. I think its a positive thing that they have this drug available and can turn to it for your treatments.

Mike

Gayle, I would say that you have gotten excellent advice from Mike--someone who's been there, done that, & is still doing it!

I agree that a positive outlook is the only way to go. Although my stage of MDS can't begin to compare with many of the crew, it makes me extremely aware of living life as fully as I can while I can. Truthfully, I worry far more about my husband's health than my own. We are doing our best to enjoy each other and our friends and family, especially our new granddaughter, Faith Andrea, who is 2 weeks old today.

My Hgb count today went down, as expected, but is still not too bad. I'm back where I was a month ago.

Posh, enjoy this Christmas with Dad. It will probably be the last one, which makes it all the sweeter.

LaDawn, it's good to see you posting again. Come by more often!

birdmom yes it looks like it will be his last. I plan on spending that time with him. We are going to my daughters for christmas dinner. after the holidays we are going to call in hospice to give him his blood and plts at home! that makes me feel better since his white count is now going down as well. please keep us in your prayers that he makes it thru the holidays!

My prayers are with you all as I prepare to remember last year being the last Christmas with my mom....she fell on Christmas Day, I took her to the hospital the next morning and she never got home again, she died on Jan. 11th, I sat with her the last week and slept in a chair and would do it all over again....I miss her so much.....Janet

Merry Christmas to my leaky boat family! I hope you all have the best Christmas ever!

Yes, I second that. Merry Christmas to all the crew, especially Janet, and to the spirit of Cap'n Chris.

Hope everyone had an amazing Christmas with their families! Dad was able to get a transfusion on the 23rd and really enjoy the holidays with all his kids and 2 and 9 year old grand-kids.
Wishing everyone the best!
Julie

Dad is growing so weak. his new platelets are not working anymore already and he has only had 2 of those transfusions. meaning he has to have them typed and matched now and they are not working! he was not able to do christmas dinner with us at my daughters and it was so sad to me. a look into the future I suppose. anyone know how long he can go on like this?

Thoughts and prayers continue. Hope he is comfortable and you can stay strong. Not liking the preview of coming attractions.

I so remember last christmas, my family was in the same place as you are, my mother fell because she was so weak and couldn't come to our family dinner....we knew that would be her last christmas, she was bleeding internerly and died on Jan. 11. So I feel so bad for you and you have some hard days ahead of you so remember we are here when you need someone to vent to....keep us informed...I check everyday to see how you are doing....Janet

I think you guys are the only ones that understand things I am feeling. my siblings don't even go see him. one does some but not the other. it is horrible to see him going down like this. I want you all to know how much you mean to me and I pray for you all every day. his plts were down to 8k today and had to get regular plts instead of his new stuff. I feel lost.