Updates

[Terri]

Haven’t posted any of Bobs updates in awhile, Still on the Vidaza but about a month ago whites Climbed considerably into the 60’s again but the rest of his counts pretty much held, Dr checked us again less then a week to see how he was doing since Bob kind of has these blurps now and then and always came back around. Sure enough he went down in the 30’s, His vidaza was due, Went through that and then almost the last day of shots one of the areas developed a button like blister (Blood blister.) It stayed like that button size for two days then it grew as the blood pooled inside the blister( Bob always has large bruises after his vidaza shots) It seemed like the bruise was pooling into this Blister that now looked like a large blood clot on the outside of his arm. Finally it broke off and no major bleeding considering his plts are in the 40’s . Next weeks counts his whites were back up in the 60’s and hgb 8.5. Dr indicated for Bob to decide on how his body felt if he wanted to be transfused at that time. (This was on Tues) they said to call if he wanted them to sched a tx. Stubborn as he is he waited through the weekend which was such a mistake, Went into the DR office (Now one of the other offices that we do not usually go to and I bring this up as we have had a similar incident as what I will explain) His counts were WBCS 112, HGB 6.5, PLTS 64 Now everything was much higher then the normal lab we go to each week excpt the hgb. So they Immediately did a BMB (We get the results tomorrow) then rushed us off for him to get two units tx. Done, Next day we go back to our Normal office and lab to check is counts after the two units. Whites are down by 50, HGB only up to 7.7 after two units and Plts back to where they always are high 30’s mid 40’s. It is so frustrating as I do Believe that even though we are told machines are calibrated often and consistantly that there would be such a difference. The last time this happened was on a Hospital admission, Counts at the Normal lab were one amoutn and the Hospital another. Sure makes me nervous WHAT ARE THE REAL COUNTS.

Today Bob had two more Units of RBC and we go in tomorrow to our normal Office and lab for The BMB results and another CBC.

Our Drs office/lab is all part of the local hospital They are supposedly creating a state of the Art cancer unit and building a new hospital building for it.

Last month the doctor was considering increasing Bobs vidaza as he felt it was helping his marrow, However now Not sure what avenue he will direct us on until we see what the report says.
I am Praying and hoping Bob bounces back as he always did just like last year this time when he had the brain bleed and could barely walk. A month later you not have known it happened.

Just sharing some of our latest experiences.

I read the board all the time, Just so many doctors visits, etc and a FULL TIME job I don’t have a lot of time to post.
God Bless All

[SandyB]

Terri:

I know just how you feel about the machine count differences.

Last month, Mike had a CBC (he has at least 2 to 3 a week) at the Dr.s office. Results: WBC 1.6 HGB 7.8 Plt. 15. Two hours later he was being admitted to the hospital for an ear infection and they did a CBC. Results: WBC .8 HGB 6.6 and Plt. 6 All done within 2 hours of each other in buildings that share the same parking lot.

Our Dr. was letting Mike go without transfusions, even when HGB was 6.3. When he was admitted at the hospital the nurses said that was entirely too low. When they admit a patient with a 6.3 HGB, they are admitted in Critical Condition.

This gets real scary when there are such fluctuations at such desperately low numbers.

I will be praying for you and Bob, and hope that things will stabilize again for him.

Sandy

[patti]

Terri,

Good to hear from you. Glad Bob is hanging in there. I understand what you are saying about different machines. Although mom used two different offices to see her doctors her counts were always the same between the too. If she had those differences that would have freaked me out and always made me wonder if they’re really correct or not. Like there isn’t enough stress to go around already, huh?

Take care and hang in there,

patti

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