First of all, congrats to Rachael for getting #1800. I thought I was going to snag that (in honor of our deceased Cap'n Chris, who loved to get those even numbers), but you beat me to it.

gwgmti, I feel badly for you that you're going thru such distress. Sometimes I feel like a fraud on this list, since I don't take any cancer drugs, unless you count Aranesp.

Becky Jean, I'm not clear on how often you are getting xfusions. Do you get a couple pints at a time?

When the nurse at CCare asks me how I'm feeling as she brings my Aranesp, I know it's bad news. Looks like I'll soon be having my second xfusion, as I dropped fast again, to Hgb 8.3. My next apptmt in 2 weeks I also see my Dr, so we'll see what he thinks. I already know that he waits till Hgb falls below 8 to recommend a xfusion, but I'm getting pretty darn close.

I was interested in gwgmti's counts & Becky Jean's response because I'm very curious about two of my results. Neutrophils are in the normal range (2.3), which I think is a first for me. Lymphocytes dropped to a new low (0.6).

The good news is that I don't feel bad. True, I can't always finish my line dances because I'm winded, but I'm happy that I can still dance, period. I don't feel more tired today than usual. Just can't figure out this stuff!

In fact, my worst problem for several weeks has been acid reflux, but I have made some changes in treatment, & so far so good. Sharon

Rachael, thanks for the encouraging words. I plan on trying to stick this treatment out (although 6 months seems like a long time for side effects). I pray the results from your BMB show that you are in remission.

Sharon, you certainly are not a fraud to be on this list. You are having transfusions which is something I have yet to experience. Unfortunately, from what I have read about MDS, we will all probably experience most of the associated miseries that this disease brings like chemo and its side effects, transfusions, the never-ending fatigue, etc. Since we are all so different our experiences seem to happen at different times in the progression of our particular MDS.

On 9/14 I went for my weekly blood test. The clinical nurse saw me before the results were back and said she was worried my neutrophil would be low and I might have to stop treatment for a bit. Well, then I saw her when she got the results - everything was UP. She couldn't believe it. My HGB went from 10.6 to 11.7, while my WC went from 3.07 to 3.02, the neutrophil went from 1.03 to 1.150. And to top it off my platelets went from 57 to 93! All of this in one week. Again I am mystifying my doctor because the variances should be small. Can hardly wait to see what this Friday brings!

Hugs and best wishes to all.

Sandy

Saw my oncologist yesterday, Hgb 8.5, so no xfusion for me yet. Belly problems are apparently my biggest problem, & I have a Dr apptmt this afternoon regarding that. Sharon

I was diagnosed with MDS in June of this year. I have received 3 units of blood during that time. I have not received the results of my most recent blood count, but the previous one showed a hgb of 8.3, wbc 1.4 and Plt count of 80. I will probably receive more blood this week. My doctor suggested I receive Dacogen. Reading the side effects frightens me as I am already very weak and tired, along with feeling lousy. Have any of you received this treatment, and are the results worth it. My doctor has told me that my life expectancy is in the months, possibly a year.
Thanks for any info you can give me.

Johnleep,

I haven't posted in a long time, but keep up with all the email alerts. My father had MDS and recently passed away in May. He lived with MDS for 7-8 years. I know it's different for everyone. He was very fortunate it never developed into acute leukemia. He did receive Dacogen and it did work for him for about a year. I wish you the best of luck and hope whatever treatment you pursue it helps.

Julie

I haven't posted recently, mostly because I wasn't sure what was happening. I should know more tomorrow.

Sharon, I started to become transfusion dependent last Sept. Two units of blood usually kept me for two months. My hemoglobin Dec. 30 was at 7. The bone marrow biopsy in December showed an increase in the abnormal cells from the biopsy earlier in July so I began chemo.

I started VIDAZA in Jan, 5 days a week repeated again in 4 weeks. As a result, blood levels were down and I had 2 units of blood after completing each treatment. I then had another bone marrow biopsy
in May, the results were not what the doc wanted so he switched me to DACOGEN.

John Leep, I started Dacogen in June, but the doc put me on a reduced dosage. I had 2 units of blood the next week, and the following week not only did I receive 2 units of blood but I also received 1 bag of platelets. After day 5 of the 2nd Cycle, I received 2 units of blood and 1 bag of platelets. Two weeks later I received 2 & 1 again. The same with 3rd Cycle. My only side effect is weight gain. Everyone tells me how good I look and it's mostly due to drugs. I don't have much energy that's true. You didn't mention your age but I'll be 77 in January and a bone marrow transplant is not an option.

I told the doc I needed some time off in October, I'm a 16 year breast cancer survivor and we have a lot going on in October. I also wanted some quality time to visit family for Thanksgiving & Christmas.

My levels were really down this past week, the doc gave me the option of getting transfusions but he really wanted to wait another week if I could. I see him tomorrow and I'm sure to get platelet & blood transfusions on Tuesday.

Comparing Vidaza & Dacogen: By day 5 of Vidaza I didn't want to eat, the chemicals left me with no taste buds, returning after a couple days. But even with low dosage, Dacogen made me more dependent on transfusions, I didn't need platelet transfusions with Vidaza.

I've been dealing with anemia since 2005, but it was only this past year that I went from Level 1 to Level 2, but so far no Cancer. MDS is different for everyone and everyone responds differently to treatment. I have MDS with Trisomy 8.

I see Doc tomorrow, we'll see what the blood levels are and what his plans are for future treatments. Stay well everyone.

Thank you for your responses. They were helpful.
By the way, I am 81 years old and my given name is John.

I'm back from a wonderful week with my friends for our annual reunion in Nevada. Brought some of my money home this time.

I'm so grateful that the first thing my reg Dr put me on--probiotics--worked for my belly problems (50 billion bacteria can't be wrong!).

I will get my next blood draw Tues, which will be 3 weeks between. Since I feel well, I'm sure my Hgb will be stable.

John, best of luck in your fight. Your MDS must have progressed quite a ways before you were diagnosed since your life expectancy is not so hot. But you never know... I just hope you can feel somewhat better during your treatment.

Becky Jean, thanks for adding the details. You've had quite a time with your treatments & I can certainly understand your needing a break. I was curious as to how the xfusion repetition times usually work. It's been over 5 months since my first, but it seems to me that the more you have, the more often you need them. True?

Julie, that's you, Posh, is it not? That's your dad, anyway, in the picture. All this time we never knew your name. Now you can tell us what PoshShorty means! Sharon

This is Julie, I'm not Posh. Sorry for the confusion. I've posted on here a few times, but it has been months since I have. I follow through emails.
The picture is of my father, Roger Jahnel. He recently passed away at the end of May.
Wishing everyone the best and continuous prayers for all.

Julie

I guess I should have gone back thru the posts, Julie. I sure did confuse you with Posh.

But I'm glad you posted, & the pic of your late father seems so familiar. Posh lost her dad before you did. It's hard to believe that I lost my father to MDS 23 years ago! Sharon

Hey there everyone - long time no post and I apologize for that. I'd like to have some legitimate excuse but I don't. The darn email part of the site apperently is still broken so I don't get the daily or weekly summaries/reminders and I tend to forget (I have eggos every day for breakfast just so I can remember what I had when someone asks :-) ).

First an update after 3 yrs on Dacogen my blood counts were staying in the same ranges - WB 1.2 to 2, RBC - more later and Platelets between 12 and 20. On the red counts I've been on by-weekly transfusions for about a year and a half now. The counts are usually in the low 9s and go up to what ever for the transfusion and though this sounds high to justify them it does keep me active and all the inards functioning. We decided to get off the Dacogen as a test to see if the chemo was keeping the counts from improving. They stayed the same. I've been off the Dacogen for about 4 months now and will go back in Nov and Jan to just follow up. As I said I get blood tests and refills on the red stuff every two weeks so we can watch for sudden changes. I obviously feel much better without the Dacogen related fatigue though as I have said before the side effects of Dacogen have been relatively minor compared to so many of the chemo treatments. My Oncologist told me I have been beating the odds for quite a long time and my GP made the comment that compared to his other patients with MDS they are getting a lot of mileage out of me. LOL LOL. I just tell them that between the Lord, Mama and the grand kids I still have to much to do.

John 4 years ago one doctor told me I only had 3 months to live. Fortunately the doctor I'm with now diagnosed it as MDS and we've worked together ever since. You'll get more tired than you are now and have a few other effects but nothing that will keep you from not giving up the fight. Don't let this junk determine how your going to live your life - you You live your life on your terms.

Sharon, Becky Rachel and everyone else I'm glad to see you again and I'll try to get better. I'm not sure what the #1800 referenced but was delighted to have a smile come to me from talking about our buddy Cap'n Chris. I still love the memories of the notes of encouragement that he would send along with his always positive attitude.

I could go on forever but I don't think they have page wrap here LOL Have a great week and weekend everyone. God Bless,

Mike

Mike,

I'm soooo happy to hear from you, especially since you're doing rather well. Like you said, you have a lot to do before you get your reward!

I was surprised that you have so many xfusions with your counts, but whatever works. My Dr won't let me have another till I'm in the 7's, & I was 8.4 this week, been stable about that point for the last 3 visits. Do you get platelets as well? Yours are pretty darn low.

MDS has taken second place to belly problems for me. Thought I was "cured," but no, so I'll have to pursue them with my reg Dr a little sooner than planned. Cancer Dr says it has nothing to do with MDS, but I can't help but wonder about the effects of anemia on the body. Sharon

Hello all
I check in here every now and then. I was diagnosed with MDS a few years ago and found this place very helpful,especially encouraging notes from capt. Chris.
In June '10 I was upgradeded to AML and told that I didn't have long. Since then I've had a transplant 21 months ago and I'm still here.
I've seen a few posts here where the doctors have predicted early mortality. Mine did to. My advice is to not buy into it and keep up the good fight. These diseases are complex and a lot of us are beating the odds one day at a time.Good to see you Mike! Best to all.

Ah Jon, how wonderful to hear from you too! Check in more often, because you serve as an inspiration to the rest of us. I've always been a bit surprised that the docs would do a xplant on you; you're in your mid-60s, right? But then I don't really know what factors the docs use to decide if you're a candidate. Maybe you could enlighten us?

Mike, the reference to #1800 had to do with Cap'n Chris's love of getting to post on those even hundreds. Sharon

Hi All

Thought I'd write up a quick post before I take my son kayaking. I recieved the results from my bone marrow biospy today and I still haven't achieved cytogenic remission. Most people I know that have del 5q and are on Revlimid are in remission from six months to a year. I've been on Revlimid for twenty-six months now.The doctors now want me to have a TP53 test when I have my next biospy. My lymph cells have slightly increased and so they aren't as happy with my results even thouh my blast count is normal and my red, WCC are fine. My nuetrophils and platelets still are low, but thats been my normal for a long time. BMT was discussed, but I really don't want to have one until it's my last option. I feel really well and will be competitng in the Worlds surf boat title in two weeks. I'm just so dissapointed that I didn't achieve cytogenic remission. I'm doing everything to eat well and kit fit and strong...so sorry about raving on, I'm just a little sad.

Cheers Rachael