Hey Sandra

There are a lot of different levels, variations, etc of MDS. If you havn't done so already I would suggest an additional opinion from a good oncologist. My understanding of the function of platelets is they are the parts of your blood that allow clogging. When I had my port put in they were in the 60's and I had to have a couple of units transfusion. Mine have been as low as in the 30's the week after chemo but go back up to the 60's to 80's after a few weeks. Another clue that they are down is I can bump against something and end up with a blood bruise under the skin. From what I read on the net about your MDS it is the least likely to turn into full leukimia so that is a blessing.

I hope that helps some.
God Bless and congrats on the 46th anniversary. We make it to number 45 in a few weeks.
Mike

Sandra thank you. I have a sleep disorder and have for years. takes me forever to go to sleep but staying asleep is all but impossible. I am really ok with Dad's passing. Yes I miss him terribly but I know without a doubt where he is and that gives me a peace beyond measure I think. at least for now! thank you again!

Hello, I'm new here. My very active Mom, age 88 was diagnosed in May with MDS, type RCMD with IPSS 1.5 and the weird 5 gene thing. It has been a rollercoaster ride. I'm sad today because she's having a rough week. Counts all low. She's on Dacogen but we've only made it thru 2 treatments one in early June and early Aug. with transfusions, platelets and shots in between. Being a Type A person all her live (still drives meals on wheels for the old people), this has been tough. I'm beginning to think the chemo isn't worth it. She's so fatigued and now restless legs have started. Any suggestions appreciated! Thanks for letting me butt in here... My name is Cindi and I'm the baby of 4 girls trying to take care our Mom in TX...

Cindi, That is rough for a lady her age. I am only 67 and since the end of June, I have been on that ride. I go to have 2 more units of blood in the morning. My hemoglobin is 6.3. That will be units this summer. Tell her she just has to rest and when she sees the doctor make a list of questions. And drink plenty of water. Love and prayers. Sandra

I am being treated with (chemo) Dacogen every 28 days (5 days) and feel perfectly fine. I have had 16 treatments...it's working! I lead a
perfectly normal lifestyle. I golf, go to dance class...fun and am very social, I went on two cruises this year. I'm going to tour New Mexico in October. I do alot of hand washing, try to eat well and keep a very positive attitude. I do experience ear pain which is a side effect of the
drug, we're working on it, trying to find something that will help. I'm very well taken care of, doctors are wonderful and caring. Prayers and
support are also the key. I'm 71, it's been over 3 yrs. since I was told
"you have myloedysplasia". Life is good!

Welcome to our leaky boat, Cindi & Patsy.

Cindi, what a mom you have! I'm especially impressed with the fact that she delivers meals on wheels to "old folks." Her fatigue & RLS are issues best taken up with her oncologist. Ask what happens if she doesn't take the chemo, for instance.

You live in the Dallas area? My daughter is in Garland.

Patsy, you are a terrific poster child for Dacogen. Your good attitude has to be helping also.

Saw my oncologist yesterday. Hgb exactly the same, 9.7. So he says keep on keepin' on. I too live a rather normal life, with line dancing & gardening my exercise. I have two cruises coming up before the end of the year, which will cause me to go 3 & 4 weeks between Aranesp shots. I sure hope that doesn't bring down my count too badly.

Posh, I'm so glad you're still with us. You're a fixture, you know!

Mike, I had to chuckle about the blood bruises. That's part of the "fun" of MDS--trying to remember how you got each one!

Hi I'm new to this saw you're a birder-- thats my main hobby -esp when I'm feeling so weak-- never h ad that in my 88yrs. Ive really been blessed. and now my nurse daughter who lives in San Antonio is here waiting on me what a b lessing since I'm so weak! I have 5 bird feeders and 2 bird baths in my small back yard. Plus the hummers are back so I have 2hummer feeders out too . so we enjoy watching birds from dining window. Now I have a hawk scaring the birds away
Betty

Anyone every diagnosed at the early stage MDS?

My mom has done tonnes of bloodwork, has had a CT scan, multiple x-rays, and has had her bone marrow checked. Her blood counts aren't good and she requires transfusions almost on a weekly basis. Today her hemoglobin was 80 and her platelets were at 57. The oncologist hasn't found anything definitive in her bone marrow, but he suspects it is an early stage of MDS because apparently in the early stages of the disease the bone marrow appears to be normal, but she has aplastic anemia that hasn't been caused by anything else.

Has anyone else experienced this with the early stages of MDS? is it normally this difficult to definitively diagnose ?

Thanks for all the encouragement. I'm glad the Dacogen is working for you Patsy. And, we're going to investigate some of the other things we've seen suggested on here. Mom was encouraged to hear some of you are dancing and going on trips! She's so wanting to go back to Minnesota to see her sisters, but can't right now. Please send some encouragement to Bettybirder if you feel inclined. She's not sure how this board works yet.

Mike, thanks for all your helpful suggestions. Had lunch with Mom today and took her flowers. We looked thru all her records and couldn't find her blast #'s. So, that's on the list to ask the Dr. next visit.

Back to work now, take care everyone!

Yea Bridmom. Yesterday was a tough day for the blood bruises. My backpack that I carry the laptop in slid of my shoulder onto my arm...yeppers there was number one. I moved the sliding glass door and my arm slid against it giving me the second then my hand banged the car door getting the backpack out of the car for no three. One of my nurses at the infusion center told me today I bruise pretty LOL.

Mike, Thanks for your reply....Happy Anniversary to you and your wife on 45 years...it is nice to still have a spouse after all those years.
I am beginning to think that I would like to see another hematologist. I do understand that plateletes are for clotting. It was weird...my platelets was 57 and when the repeated my cbc...it was 72. I do have many bruises. I had two units of cells this morning and feel somewhat better. Hoping to get some answers tomorrow when the doctor is in. We want to leave Saturday for upstate NY and want to feel better. Thank you all for all your support. Really glad to find this site. Betty birder...glad that you can enjoy your birds. I am trying to keep a positive attitude as all of you. God loves me and all of you. Sandra

Welcome, Betty! I'm glad to hear you have help with your feeders so you can enjoy watching them. Birding all over the U.S. was my main passion for many years, but now I must be content with those in my vicinity. Hummers are my favorite, but right now they're so numerous, they're wearing me out being their body slave.

Sandra, I hope you get the answers you need today. Let us know what you find out.

Mommasgirl, this is a strange situation. Perhaps it's time to go to one of the biggies, like MD Anderson. I don't know where you live, but perhaps some of the crew could suggest appropriate centers.

Went for my two week lab and Aranesp inj today at Geo Washing Univ Hosp.I did ask at the infusion center regarding the different dosage and visit that some of you are on. It's just GW doctors call. Visits every two weeks and 200 mcg injections. It really is an inconvenience every two weeks but personally I feel close follow up works for me.

Not sure what's going on with my blood. 26 days on Danazol and the blood levels are going down again. Aug 3, HGB was 8.1 so in addition to the Aranesp, the doc ordered Danazol, I take a pill twice a day. 2 weeks later, the HGB was 8.6 so I was encouraged to think the Danazol might just be my miracle drug. However, today was a different story, the HGB down again 8.3---I'll continue with Aranesp shot and Danazol pills for another 2 weeks to see what happens. I see the doc on Sept 15 for evaluation and decision time. I just have a lot of questions this time around.
Just have to think positive along with the rest of you. My grandson and family are coming from Alabama for the weekend. The little ones are 9 & 7 so it'll be fun. Have a great weekend everyone.

I've pretty much given up on trying to predict blood counts LOL. My WBC on Monday was 1.5 and today after 3 days of chemo was up to 1.8. RBC and HCT had gone up some to as had the platelets but just a little. Will have Sunoco Race fuel transfusion tomorrow a.m. followed by last chemo fot this round. I'm usually pretty crummy for a few days after the transfusions so will no doubt spend the holiday weekend in the ole easy chair.

God Bless and have a great weekend everyone.
Mike

Dear Friends....I think I told u all that I had two units of blood cells without the white cells on Wednesday...hemoglobin 6.3
Today I had another cbc and my hemoglobin is 8.1
I wished it was higher, but have to take what you get.
My husband and I are leaving tomorrow for upstate NY to bring back our two grandsons. I plan on attending my sister's 50th wedding anniversary on the 10th.
I am due for an arenesp injection on the 9th and have to wait until I come back. I didn't see a doctor this morning...guess it wasn't that important. Love and prayers to you all. Sandra