Hey all -- a voice from the day by day. I hadn't been out here for a very long time because I forget now that I don't get the emails anymore (I really wish they would fix that as my forgetfullness seems to be increasing). Still hanging around. Been four years next month since I've was diagnosed.

About 3 months ago the doc decided we should try a break from the Dacogen just to see if that was holding my counts down (I had been on it 3 1/2 years). The counts rose to mostly in the 2s with a couple in the upper 1s for the wbc and from 18 to 22 for the platelets. Red is taken care of by a every two week transfusion regime. I go back in October to see where we're at though the every two week blood tests give a good status check. Being off the chemo is terrific in the way I feel. It's back to the way I was before they figured I had this junk. Had fatigue and shortness of breath but overall felt good. So I"m enjoying the break. He told me I had been beating the odds for quite some time. I just keep telling him between the Lord, Mama and the grandkids I just have to much to do.

I hope and pray all of you are doing better and again apologize for not getting out here like I should.

Have a great weekend everyone and keep smiling.

Mike

Millie what is the platelet clinical trial that your on and is it related to MDS??

Thanks
Mike

Sharon - yes I started Revlimid last Friday. My counts were down so she said it was time. I take it when I go to bed. So Sat & Sun I felt queasy, whoozy, loss of appetite, slight headache. Monday I felt fine. Tues and Wed I was ok so I did play golf and then took 2-1/2 hr naps. Today I am back to whoozy, headache, tight chest, body aches, 2 hr nap.

I go tomorrow for blood count so anxious to see what has happened.

Sandy

Hello everyone, hope everyone is feeling well today. I have not posted in a while. I have been feeling fatigued. My Hbg had dropped to 9.8 which is lower than I have been in a while. They are doing better now. I am now having gall bladder issues so surgery may be in my future. I just try to stay positive. Be blessed and I will try to check in more often. FYI...a new support group is being formed in the atlanta area for MDS and its first meeting is on September 8, 2012 at 10:30am at the Atlanta-fulton Public library on cascade rd.

hi gang! hope everyone is doing ok! today is rough. Dad's birthday. been a rough day but getting better. luv u guys!

Well, what a surprise to hear from you, Mike! I'm happy to hear that you got a break for a while. We'd sure like to have a way to know that you're okay (or not) since you don't post very often. Does your wife know how to post to us?

Sandy, crappy one day, golf the next--wow! Your Hgb seems pretty high to me, so it must be your red/white counts that are the problem, or platelets. What are those figures? MDS is an umbrella group, so we seem to vary a lot in which area is a problem. Platelets for me are normal; it's low Hgb & red/white counts.

Jymini, I'm so glad that you posted at last. If you do have to have gallbladder surgery, at least it's done less invasively these days. My daughter came thru fine with hers, as did my mom when she was alive. Somehow, I've escaped that one.

And Posh! I love it that you still consider yourself part of our leaky boat crew. It does get easier as the years go by. My son's death anniversary (9th) was last Saturday, & I didn't get dragged down at all. My mantra is "Life is for the living." Sharon

Jymini, I had gall bladder sugery 2 years ago. I assume they would do yours via laproscopy (which I had) and that makes recovery time much shorter. I was slowed down about one week and then really started feeling better quickly.

Sharon, my Hgb always has been my higher number. Platelets my worst - lately from 78 to 49. White count in 2's and low 3's, red in 3's. So I've had the Revlimid for 2 weeks now. After first week white and platelets went down slightly but Hgb went from 10.9 to 11.4. Yesterday Hgb was 10.6, white down 3.05, platelets same 76.

I really am having a hard time understanding the relationship of all the counts. My doc is always concerned about the 3 major counts but also extremely interested in the neutrophil # (which was down yesterday to 1.24). Does anyone understand the importance of this number?

All in all for the 2 weeks I've been on the drug, I have had side effects but I would consider them mild. It does seem that one day a week is a bad one when everything is worse. I figure 1 out of 7 is a pretty good ratio so I'm happy.

I pray everyone has a good weekend. God bless you all!!!

Sandy

Hi all,
Just thought that I would drop a line. I check in here frequently to see how everyone is doing. Not much new happening with me. I have my 6 month checkup in Oct. I am anxious to see how my counts are doing. Seems like the last couple of months my energy level is just so low. I get so fatigued during the afternoon and excertion of almost nothing gets me out of breath. By night time, all I want to do is go to bed. But I find I have a hard time sleeping soundly and wake up often. I think some of it is just the aging process. I know I have it so much better than others on this blog but just trying to understand what might be normal for MDS is sometimes confusing.
Hope everyone has a safe and Happy Labor Day weekend and to those who might be affected by Hurricane Issac you are in my prayers! Stay Safe!
Janet

You're not just a-woofin', Janet. It is so difficult to tell what is related to MDS & what is not. My own Dr isn't very helpful on that score, but usually shakes his head no when I ask about a symptom.

Had my shot yesterday. Hgb down to 9.0. RBC 2.39, WBC 3.2. I wasn't surprised at dropping again, but the Hgb is a whole number down in a month's time. I pray that I won't slip a whole point down to 8 in another month, like I did last time.

Tiredness appears to come from many sources, because our crew varies widely in the problem areas. I keep trying to find more info on that, but haven't succeeded. Low platelets are a clotting problem. Low white count is risky for infections. Low red count means not enough oxygen is getting to all parts of the body.

My eosinophyl count rose a lot, so I checked that out (again). Appears to be a response to allergies, & heaven knows my area has a high level right now.

I think you're a little young, Janet, to be wakeful at night because of age. In my case, I'm old enough for that, but it's usually the phone ringing or coyotes singing or owls calling. Maybe you have things like that? I too hit the bed early (last nite 7 pm), but usually 8-8:30 & up between 5 & 6:30. I hate naps, so I wind up hitting the sack earlier than I'd like when I'm tired.

How about the rest of the crew--what say you? Symptoms are the major question for most of us. How do you tell what's MDS-related & what is not? Sharon

Hi Everyone! I'm trying to make sense of the last three weeks. I became very ill, spent 7 days in the hospital and had numerous tests, including a bone marrow biopsy. Since I had chemo for treated breast cancer, my doctor felt strongly that I had MDS. The bone marrow results came back with the findings of a defect in my 5 and 10 chromosomes. I have been so fatigued and get short of breath very easily. My doctor took some more blood tests yesterday and told me this morning that my blood counts were within normal range and that I don't have MDS...or 5q minus syndrome. Is this possible when I have this gene abnormality and all the symptoms of anemia? The doctor said that the unknown virus that I had in the hospital must have suppressed my bone marrow blood counts and that the defective 5 and 10 gene could have been something I have had my whole life.
I am still very unsettled with this. My energy levels are so low. Can it be possible to have MDS but still have your blood counts be within normal range? Thank you !

Mommyjoy, you know that something is wrong. Extreme tiredness plus shortness of breath are telling you that (classic symptoms for MDS). Having had treatment for breast cancer perhaps makes you more at risk for immune disorders, but a normal blood count? Platelets normal too?

The virus you had--could it still be lingering? Sounds like it was pretty serious if you were hospitalized for 7 days. Could be that it just wiped you out, & your body needs time to recover.

Genetics are beyond my poor pea brain, but I did a little bit of searching the net with not much luck. Keep at it, Joy. You may need to get a second opinion. I don't know where in Texas you are, but MD Anderson is well regarded (Houston). Sharon

Prayers go out to Robin Roberts this morning from GMA. She took leave from GMA to have her bone marrow transplant but left on Thursday to go see her Mother first. Her Mother passed away yesterday after she got there. May the Lord give her strength for all that lies ahead.

It's been awhile since I posted here. I started with DACOGEN in June & again in July. My levels have been in the tank so received both blood and platelet transfusions following each treatment. I was supposed to have had treatment again in August but instead had a bone marrow biopsy. Doc didn't have the complete results when I saw him yesterday but could tell me there was no cancer, it had not progressed to Leukemia. I'm scheduled for Cycle 3 next week, so should know more then.

The red and platelet counts always go up with the transfusions but
as a result, they both spike the iron so am back on EXJADE. The white counts are slow to recover but doc doesn't want to give me NEULASTA.

MDS is different for all of us, treatment is different, and recovery is different. Mine is MDS/Trisomy 8. The feeling is that my MDS was the result of 6 months of Chemo for Breast Cancer 16 years ago, however my husband smoked the first 15 years of our 58 year marriage & I'm going on 77, so age is also a factor. I've been dealing this about 7 years and became transfusion dependent 2011 so started VIDAZA Jan 2012 and switched to DACOGEN June 2012.

Hopefully the DACOGEN will work as I'm running out of options. Doc says there is always experimental drugs, but transplant is out of the question. Best to keep thinking positive, taking one day at a time and enjoy life. Best Wishes to all. Hugs!

Hi All,

Last tme I posted was 2 weeks into starting Revlimid. Well, the third week was really bad. Had terrible aches and pains all in the torso area and back pain. The first 2 weeks I had one bad day out of 7. The third week was more like 4-5 out of 7.

The doc initially thought I would be on a cycle of 21 days on drug and 7 days off. I think my third week reaction confimed her initial plan. So the 4th week when being off did help my side effects.

I saw her last Friday and my platelets dropped from 72 to 57,neutrophil from 1.1 to 1.03. hgb stayed same at 10.6. Concern about neutrophil - if it goes below 1.0 chance of not continuing treatment.

So I started cycle 2 on Friday night. Biggest complaint so far is not sleeping well. Wake up during the night feeling achey so not sure if that is what's keeping me from sleeping well. Yesterday had quite a bit of back pain and achiness.

My best to all of you. Let's just keep rowing so this ol' leaky boat will not sink.

Hi Gwgmti,

I've been taking Revlimid for two years now and in my situation I had severe side effects for the first six months, but it was well worth taking the drug because within the first three months my counts started to improve. You will see decreases in all your counts for a couple of months, and will probably find your Hbg will improve first. My nuetrophil count has never really improved after two years of taking Revlimid. My monthly nuetrophil count is between 0.8 to 1.4. My overall white cell count is stable. My specialist would only give me a break from the drug if my nuetrophil count had dropped below 0.5. My Hbg went from 8.6 to over 10 in the first two months, two years later it is now in the 14's. I never had a problem with my platelets, so I imagine your specialist will be watching for any significant decrease in this area. Revlimid unfortunately decreases your platelet count and in my case I had a very healthy count in the 200 - 300's, now it stays at about 100. I have read that it has improved in others taking the drug.

On Monday I had my fourth bone marrow biopsy to check if Revlimid has finally succeeded to get me to cytogentic remission (I have del 5q). I am truly hopeful for a positive outcome.

I hope your experience with Revlimid improves and that the side effects become easier for you to tolerate. It is worth staying on if you see your counts and health improve.

Best of luck.

Cheers
Rachael