May 4, 2007 at 12:22 am #17973
Today was Bobs first round at an increased dose of vidaza. It hit him harder then norm. Last week went in to DR, HGB was down and Whites skyrocketed. The BMB showed MDS progressed his Marrow is packed, but still not AML so dr decided to try uping the Vidaza to 100 mg each shot. He is running out of places for his shots. His arms are so bruised he gets blood BLISTERs all over.
Last week he had 5 units of RBC transfused and 1 unit plts. The bleeding seems to have stopped in the intestines and he is holding his own. This Monday HGB finally got to 11.5 and he started feeling better. The Back pain which the doctor attributes some to the Packed Marrow not functioning.
We are hoping this increase in the dose will kick start the Marrow to start working a little normal.
We are still planning a week way (Driving to Orlando just for a short getaway only 3 hrs time) and the DR gave us a thumbs up as long as bob is feeling well. He wll go in before we leave check his counts if tx needed will do it and then be off.
My Man is amazing, I thank God daily for each day we have together and that He has given Bob the strength and will to fight.
God bless allMay 4, 2007 at 1:40 am #17974eveMember
i hope this new dosage of vidaza does the trick
good luck and enjoy orlando
eveMay 4, 2007 at 1:43 am #17975SandyBMember
I hope the Vidaza increase will bring Bob back to more norm in counts.
Have a good trip, and know we are all thinking about you both.
SandyMay 4, 2007 at 5:36 am #17976
Wow. Those shots must be hard! I can’t imagine the blood blisters. Does the doctor have any good suggestions for them? Arnica maybe?
Hope you have a good trip and this increase in Vidaza does the job for Bob.
pattiMay 7, 2007 at 11:06 pm #17977
any chance in switching him over to dacogen which is administered by IV & is a demethylating drug like vidaza? also, i believe vidaza can be obtained as an IV treatment.May 8, 2007 at 12:16 am #17978
Jack, My understanding from our dr was the Decitibine which is Dacogen was different and harder then Vidaza, Actually I believe there are trials in the office for Decitibine. He thinks it would be too harsh on Bob, HOwever I did go to the web site and Found some info that I will ask him about tomorrow since we have a DRs appt.
Thank you for the insite. Bob is on the Vidaza too much for the IV’s his body is a mess, He had5 units of blood recently and all of the areas where they stuck him are now blistering and a mess, He will soon run out of veins, Plts way too low for port and I am too fearful of infections since he needs the drug as a mtc drugMay 8, 2007 at 3:24 pm #17979CarolineGMember
I hope that this increased dosage helps with Bob’s blood counts. He is a very strong man.
Enjoy your getaway.
CarolineMay 8, 2007 at 5:51 pm #17980
It sounds like Bob’s veins might be doing what mom’s did in Aug. ’06. Mom’s veins got to the point where it took two people pushing and massaging to get any blood out of them and they bruised horribly every time. You might want to consider having a picc line put in his arm. I don’t say this lightly because mom had a horrible time having her picc put in. But hers was an unusual case. They do present possibility for infection but mom had hers 8 months and NEVER had a single bit of trouble with it. We were just meticulous to change the dressing once a week and keep it dry in the shower. And in the end, although she had trouble having hers put in, she was so glad to have it. They just hook right to it for all infusions and it’s no trouble at all. There are always plusses and minuses to something going into the body but sometimes the help it would provide trumps the potential risks. Something to ask his doctor about…..
Also, mom’s picc was put in as a stepping stone to a port being done. We never could do the port because of her platelets. Mom’s platelets were at 8 when she had the picc put in the and the surgeon swore he’d have no trouble doing it without bleeding. DO NOT let them put a picc in without giving platelets first!! Anything less then 20K platelets is not enough. Trust me, we learned the hard way.
pattiMay 9, 2007 at 12:04 am #17981
Thanks all for the Support, My Bob is a Fighter His counts hung on today HGB 10.4 and Plts 41, Whites are down to 29 which is great for him. Doctor was very pleased with how he is doing at the higher dose. He said we may have to bite the bullet and Try putting in a Port so the Vidaza could be given iv. Patti he already said he would bombard Bob with plts, that is why he never considered it but if you saw the blistering he has where the IVs for the tx are his whole lower arm is covered. I take special care. And as the Doctor said Bob has been extremely fortunate that over the years he has not fought infections, (I have to knock on wood) I fear saying things that they may happen but he is on Levaquin all the time and he takes a lot of supplements for the Immune system. We are not changing a thing as far as the supplements at this point.
Look forward to a relaxing week. We will go in Monday for his Counts and away we go. Doctor said to Enjoy and we will
Thanks allMay 9, 2007 at 3:15 am #17982May 9, 2007 at 9:49 pm #17983SandyBMember
Mike has a port, Dr. thought Picc Line was more apt to beocme infected more often.
Yesterday, Mike has his port flushed, and his platelets at the time were 13. No bleeding at all.
Also the Dr. did give Mike a platelet transfusion a few weeks ago so he could get surgery on his ear. He said it is not that unusual to “Pack up the platelets” when minor surgery is necessary.
Have a good trip.
SandyMay 9, 2007 at 10:01 pm #17984May 9, 2007 at 11:33 pm #17985Jack_dup1Member
I was on Bactrum twice over the last 4 years had had to stop after two days because of horrible nightmares which would occur every time I dozed off, all night long. My Doctor said he had not heard of this happening before. As soon as I stopped the Bactrum, the nightmares stopped. No med. fits all.
JackMay 9, 2007 at 11:59 pm #17986May 10, 2007 at 5:24 am #17987
I hope you don’t feel like I was questioning what Bob is taking/doing. For me, it’s more throwing things out there because what works for one might not work for another, etc. The more info about what different people did/do can be helpful at times for others reading/searching. I’m with you when it comes to rocking the boat. We felt that way with mom long ago. We did not want to make even little changes to her routine once we got it to a certain point because it seemed to help and we didn’t want to undo anything we had done. I just think it’s interesting to note the differences in doc suggestions/practices. Hope it came across that way.
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