Chemo caused MDS: Update

Marion, Lainy and Positivity,

Thank you for your kind and uplifting words. It’s nice to have been missed, but wish it was for something more fun than the MDS.

I waited to respond because I started the next round (round 4) of VIDAZA today (I get the infusion every day for 5 days in a row and then 3 weeks off), and I wanted to see what the new blood counts were so I could relay them to you all. Of course, I was hoping for improvement.

Well, improvement came in 2 our of the 3 main blood cell lines. I was disappointed that the white cells went down again, but they didn’t totally tank, so I’m hoping that they will be better in another month.

The Platelets went from 209K a week ago to 230K today on a scale of 130K to 450K)

The Hemoglobin went from 11.2 a week ago to 11.6 a week ago (12 is the bottom end of normal)

The white blood cells went from 3.94 down to 3.24. (4.5 is the bottom end of normal). It wasn’t a horrible drop, but definitely the wrong direction. Still must be careful about any infections…lots of hand washing.

Tomorrow or Wednesday, I am supposed to call Mayo to set up whatever they want me to have for tests when I go up there and exactly when that will be. Originally, I was to call just before I started round 4 and it would be for a bone marrow biopsy, but now I don’t know exactly what it is that they want.

The good news is that the platelets continue to climb and the hemoglobin appears to be now climbing on its own without benefit of a transfusion or the Procrit shot. That’s two out of three…..and appears to be a “partial” remission thus far for hemoglobin and platelets and those white cells are “trying”. They bottomed out after hanging in there until the last round which I assume indicates the VIDAZA was killing off the bad white cells that are abnormal. Now, it seems that it’s a tug of war between the abnormal cells and new good ones. Keeping my fingers crossed the good guys win.

On another subject. Back when I was having chemo after the first ICC surgery, I had a horrible time with a port that was apparently very badly put in place by an IR guy. It wasn’t unusual for up to 8 needle pokes before the chemo nurses (often two of them working to get it in) could successfully access the port. I never allowed the blood labs to be drawn from the port in case something was too low or high to allow for chemo…..it was that awful. Each insertion was very painful., even with the lidocaine cream. I had that port taken out the Monday after chemo was done and said if I ever needed another one, then I’d get a new one….but was not keeping that first one and have to have it accessed monthly to keep it open. NO WAY!

Well, I was advised to get another port for the VIDAZA infusions, since there’d be a lot of them and we could keep it accessed for the week of treatments, so only one access with the needle unless I needed transfusion on an off VIDAZA week. It was the best thing I ever did. The new IT doctor (I refused to allow the first one touch me again) spent a lot of time working to put it in in such a way that it wasn’t too deep, wouldn’t move around or flip inside. I had one nurse have a problem accessing and frankly,something made uneasy about her to start. She tried once and then called in another nurse who got it immediately. The two times I’ve had it accessed at my new local oncology office, I barely noticed the nurse inserting the needle. They have one nurse who apparently only inserts needles in ports. She didn’t feel around for 10 min trying to decide where the port was…just touched it once and put the needle in. NO PAIN!!! I’m now to the point where I feel that it’s going to be okay in the future. For the first couple months I had the new port, each time, I would start to cry before they even cleaned the area….I had had such horrible experiences the first time and it’s all I could think about. What a difference.!!!

Thank you , Deb. The last 6 months have been a nightmare, worse than when I was diagnosed with ICC, and to think part of the treatment for the ICC post resection caused all of this. I’m hoping to be back on the boards more often again as time goes forward now that I feel better. My time is divided though between these boards and the MDS boards now. I’m kind of in a minority over there as well, so …..like I don’t really belong because there is no treatment for me past what I’m doing. I’m kind of the “cousin nobody wants to play with.” But, I still learn some things there at the MDS site and watch for new things. They have to really speed them up in trials though or I won’t get a chance to use any of them.

Meanwhile…..enjoying those two little grandsons so much and fielding such questions from the 5 year old as, “Grammy, if I died and went to heaven, would I come back to earth as another baby?” or “So, how does heaven work?”. It actually got a LOT deeper than that. That child is an “old soul!” But, I feel good that he is comfortable to ask me…..just glad the lights were dimmed before bed not to see my tears.

Julie