[jeff b]

Jack,
You can reach it by clicking on house icon on my post or http://www.caringbridge.org/visit/jeffbeck

[jeff b]

Jack,

Yes I am at the Lied in Omaha. Today is Day T-4 a rest day for me. I just completed 16 rounds of busulfan at midnight. Finall got to sleep a little longer today. Tomorrow I strart two days of cytoxan, not sure how many doses. Overall feel very good a little nervous too.

If you get to Omaha look me up room 7450
Take Care

[jeff b]

Pamela,

I don’t know of a book specific to MDS but if you would like information concerning stem cell transplants the BMT Infonet has a patients guide plus other patient information. AAMDS.org has a free patient organizer you can get.

Be sure to write down your questions before you go to the doctor and if possible take someone who can help take notes.

I am sorry to hear that your family might not be too much support. Your brothers or sisters would be a potiental donor. My sister is my donor.

Take Care,

Jeff

[jeff b]

Pamela,

First I am 40 and have MDS. I think the only way to diagnose MDS is with a bone marrow biopsy. I agree with Neil that if your are not seeing an oncologist familiar with MDS you should find one.
I am getting ready for my transplant the first part of October but I have been getting supportive care for a year now.

Also be cautious in reading information on the web. A lot is outdated and they are constanstly coming up with new treatments.

Jeff

[jeff b]

Russ,

I haven’t experienced any problems with getting Aranesp. I get 300mcg weekly. How often do you get your shot? Also I got an increase in Hgb for about six months then a gradual decrease for about four months when I got my first transfussion. I am still getting the shot and it has been six weeks since the transfussion which put me at about 11.5 Hgb. My counts were 8.3 yesterday.

Hope this helps.

Jeff

[jeff b]

Willie,
My wifes family live in Omaha and my mother with be coming up for a while from Illinois. So we will be able to rotate people.

I will be addmitted to the hosplital for the chemo. They are going to put in a port on the 3rd of Oct.. I’m not sure what the dosage schedule is for the chemo. I just know it will be 3 days of chemo a day of rest and then 3 days of chemo.

As for the walking I will try but I also have avascular necrosis in my hips, so I,m not sure how if at all the chemo will affect them.

jeff

[jeff b]

Susi,

I tried to take your post and replace some of the terms with more understandable phrases. Some of them are difficult to convert but I think it should help a little.

Peripheral blood film:
An occasional red blood cell has prominent coarse basophilic stippling. The red blood cells show mild abnormal size and shape. Fragments of red blood cells and teardrop shaped red blood cells are rarely encountered. The platelets are of variable size ranging from small to large. There is unusual granulation. The segmented neutrophils, a type of white blood cell that help fight infection, are without evidence of having more segments than normal.

The red blood cells are without evidence of being stacked together in long chains. Some of the lymphocytes, a type of white blood cell that help provide an immune respons have increased cytoplasm with some of these having azurophilic cytoplasmic granules.

Bone marrow aspirate:
There is marked increase in the number of young red blood cells that are maturing abnormally. In some regions of the slide, the cellularity consists of young red blood cell (precursors). The white cell series is spared the abnormal maturation changes. The young red cells component is estimated to account for for than 80% of the nucleated marrow cells. A rare gigantic cell that splits off fragment cells that enter the bloodstream as platelets of the usual type is identified. Histologic sections of the aspirate clot are noncontributory secondary to low cellularity. The iron stain preformed on an aspirate smear shows markedly increased storage iron. There are abundant ring shaped iron deposits.

The “diagnosis” from the biospy says;
Too many cells within the bone marrow with marked increase in the number of young red blood cells that are maturing abnormally. Increased marrow iron.

Jeff

[jeff b]

I have not been on Vidaza but reading this thread made me realize what a strange disease MDS is.
People with similar diagnosis but so many different treatments and responses.

I also have RAEB-1 dx 10/05, no chromosome abnormality, low with all cell types. Did well with weekly aranesp until last week when I had my first red cell tx. Originally the doc thought 18 months at the most for aranesp. I’m waiting on the bmb results from this week to determine the next course of action.

Jeff

[jeff b]

patti,

After Neil posted about the neupogen I found the neulasta also, I will ask about both.

I noticed on the units they gave me that it had been irradiated. The nurse said because of my age/health she would give it faster than two hours. I’ll ask the doctor today about that. Other than the coldness I felt in my arm I didn’t have any other problems. My temp stayed at 97.4 the whole time.

Thanks,

Jeff

[jeff b]

Patti,

We will keep your mil and your family in our prayers. I know it is often as hard on caregivers as the patient. As well I will ask my mother to add everyone going through MDS to their prayer list. From what she has told me she has people from IL to Texas and Florida to California praying for me.

Jeff

[jeff b]

Laural,

Sometimes I feel like taking a nap. My boss is very understanding of my condition and though I have not needed it yet they are allowing me to work from home when the time comes. Even supplying me with a laptop. I am a software engineer so I do not need to be at the office full time.

Neil,

I believe my blasts where < 5% in my last bmb in Feb. As far as I know there are no blasts in my peripheral blood. But they are changing my cbc from every month to every two weeks. I should be able to find out next Fri. Currently I go to one hospital for my aranesp shots and see an hematologist/oncologist every two months. Every four my months I go to the transplant center to see my transplant doctor. I do that because of the convienance for me. I think at the point I need transfusions I will have everything done at the transplant center. Thanks for all the information. Jeff

[jeff b]

Neil,

I don’t know the cost of procrit. The hospital bills my insurance $2400.00 a shot of aranesp the insurance company pays $1137 and I pay $5.21.

Jeff

[jeff b]

Jerry,

It helps if you get the Aranesp shot very slowly. I get mine weekly and there is little discomfort.

Neil,

My HGB was initally 10.1 when I started the Aranesp in Nov 05. It went up to around 13.2 and has been gradually coming down since. My dosage is 300 micro grams (?) weekly. We have discussed transfusions as a future treatment but my iron level is high. I’m not sure of the measure but I think my iron in the 17 range. A SCT is in my future I just don’t know when. My sister is my donor. They want to wait until the point just before I would be too sick for the transplant. Basically I was told because of the risk from the transplant they don’t want to possibly shorten my life any more than they have to.

Jeff

[jeff b]

Jerry,

As far as when the transplant will be done we don’t have a date yet. My doctor is the head of the transplant center here in Omaha and wants to wait as long as I am still reasonbly healthy. Based on his last estimates from June we are hoping for 4-6 months before I might have to look at other alternatives or transfusions besides the Aranesp.

Chris,

No I have not ever taken Prednisone. My hips started bothering me in May of 05 to the point I was needing crutches to walk. The ortho didn’t have any answer as to why. No I didn’t have the replacement. They feared I might develop an infection from the surgery. I was told it would be at least two years after my bmt.

Jeff

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