Hey Posh it's really good to hear from you.

I guess the "cause" is interpretation of tests. Until my last biopsy I was over 20% blasts which is the threshold for having acute leukimia but the history of all the labs and blood work kept the diagnosis as MDS. The doc said the risks come from getting an infection that gets out of hand, an illness that cant be cured or if we can get past those a time frame of things just shutting down which you said is what happened with your Dad. I was glad you got a lot of great time with him. We had seven memebers of my wife's family pass away withing two years, including her Mom and Dad so can share in what your going through. Hang in there my friend. The good thing is the great memories never go away.

God Bless and remember your family so keep checking in on how your doing

Mike

Mike so good to "see" you too hon. trying to think of just how many in the last 15 months! too many and I didn't have time between really to mourn any of them much. today was really bad for me emotionally. I spent time with my stepmom which I haven't done since Dad passed. bittersweet I guess. I do check in here most every day still. I just love you guys!

This doesn't have anything to do with my MDS but I know alot of people on here pray for others. My 39 year old niece was diagnosed last week with an aggressive type breast cancer and is scheduled next week for a double mastectomy. It just breaks my heart for someone so young to go through something like this. She will have a long road ahead of her with chemo and additional surgeries. She is married with 3 children and has always been so physically fit. When I hear what her future has in store for her, I realize that my condition is minor compared to her.
Please keep her and her family in your prayers as she faces what lies ahead.
Thank you so much!
Janet

I am so sorry to here about your niece. I will include her in my prayers. Most the times when you hear about others with cancer it puts things in prospective. Laura

Hello, I am a 67 y/o female who was diagnoised with MDS del 5q in October 2006, I was put on Revlimid 10 mg. daily. I was doing well until July of this year when my hemoglobin went down to 7.6 in which I received 4 units of blood and was taken off Revlimid. I went to have my blood checked today and see a nurse to get a shot of Aranesp. I didn't receive the shot, because all the blood work wasn't back and they had to check with my insurance. I was disappointed because, I am tired. I know that I am up late, but I took a few hours nap today.

Does anyone know what LYMPOCYTES % means? Norm is 20-45 and it was 86.5. I tried to read up on it and thought maybe it is up because of the cells I received last month. Not sure.

It seems like I have been repeating myself, in this support group...please forgive me...I am new and still learning. Thanks...Sandra

Lympocytes are a type of white blood cell that is expressed as a % of total WBC. They are an important part of the immune system. A high number can be a sign of infection as well as disease. It is important to look at the total WBC and the other white blood cell markers including Neutrophils and Monocytes before understanding the meaning of a high count.

Janet I will be praying for your niece. so hard to hear that of family members.

Hi Neighbor PoshShorty,

Just remember that time helps heal. After my mother passed in 2002, my son suggested I write her when I was feeling down. It helped immensely. I would write and talk to her just like she was here. Even though the pain has gone, I will never quit missing her. As for my husband, we are trying to get him in a clinical trial as the oncologists say that since the Vidaza didn't work, and the clinical trial at Emory didn't work, perhaps another clinical trial might slow down the progression. His platelets are down to 26,000. Our insurance company is giving us all kind of problems and I had to file a complaint with Medicare yesterday. Believe me, we will not be under a Medicare Advantage Plan next year. It has been a nightmare and they care NOTHING about my husband.
Sorry, didn't mean to get on my soapbox.
Hang in there, stay busy, and be thankful for all the wonderful memories you have. You were a wonderful daughter.
Linda (Jackson, GA)

I just want to say thank you for the prayers regarding my niece. This is difficult time for all our family.
I feel so blessed to have found this site. The info that I have gotten here has really helped me out alot even though I am considered low risk mds and am not taking any meds. I know that I don't have alot to offer those who are having a difficult time managing this crazy disease but just know that you are in my thoughts & prayers.
Take care!
Janet

Granny10 I would suggest a couple of things to look into. I have the AARP United health Plan "J". I think the cost is a bit different depending on where you live but in my case for a bit less that $200/mo they pick up all costs (except drug store type prescriptions) that Medicare does not pay. That with the Mediare payment of just over $100/mo is still well worth it when you consider the costs of my regular monthly chemo (billed cost in excess of $35K - of course paid amount much less) along with every 3-5 weeks having $4K worth of blood transfusions, a port installed etc.. In addition I would check with the Nationl level of the Leukimia Society. They have a reimbursment plan that, if your approved, pays the Medicare and AARP premium costs along with any other copays and some other costs. It's been a real blessing for me. There also may be a local chapter that could have some funds available. Thier year runs July to June so I would get in touch and get your app in right away. Good folks and always have been great to work with. Check with them to see if there is any retroactive available. I"m not sure how that works.

I hope that helps some.
Mike

granny thank you so much. I am sorry you are having to go thru this with insurance! geesh! Dad never had to pay a dime other than his copays at the dr visits thank goodness! best wishes to you and yours!

Laura Baldwin is at Maryland University Hospital as of today, where she is having her bone marrow transplant. I told her that we will all be praying for her. She is going to e-mail me with updates when she is able and I will pass her information on to this site so we can track her progress.
God bless Laura, and her sister who is the donor.

Hi Everyone,
My mom has almost been bedridden since June. The doctor said she could have MDS, but he is testing to see if its just a B-12 deficiency instead. We started up on that Wed, but nothing has changed.

My biggest concern with her is the CONSTANT fevers. She gets them all the time, is this consistent with anyone else with MDS? Her whole story can be found on my page.

I didn't see any results for the white blood count. Obviously fever is the bodys way of saying something is wrong. If the WBC is low that is what is needed to fight infections. My WBC stays in the mid 1's to the upper 2's all well below the 4 minimum for normal. My doc's rule is if I get a fever of 100.5 I call my him (he's an oncologist) and he starts me on antibiotics I have at the house just in case. I had one time that I was in the hospital for the weekend getting big doses of antibiotics. I"m just guessing but would assume if your Mom's WBC is low also they would have her in the hospital if the fevers are high.

I hear a lot of folks with MDS talking about the fatigue and shortness of breath that comes from low red cell counts. I get some low grade fevers and night sweats fairly often but so far so good on the higher fevers.

Not the same symptoms as your Mom but I hope it helps. Welcome to the group. it's a great place to come for info and support. I'll have your Mom in my prayers.

God Bless,
Mike

Thanks so much for your reply mikeyti