MDS is a bone marrow failure disorder
MDS is a blood cancer
Learn More >

Welcome to the MDS Patient Message Board Post New Thread

Welcome to the MDS Patient Message Board. We hope that you will find this to be a very valuable resource in your journey. We have recently revised the format of our forum to be much more user friendly and pleasing on the eyes. Let us know if you have any problems, or if you have additional suggestions on how we might further improve our site.

Increased Vidaza

Home forums Patient Message Board Increased Vidaza

Viewing 13 posts - 16 through 28 (of 28 total)
  • Author
    Posts
  • #17988
    JSRN
    Member

    My mom is also on Vidaza and it was a God send when she could get it IV route. She has had a port for 5 years.
    As a RN I can tell you the port has less risk of infection. Both picc and port can become infected. But the picc is an open source. The dressing has to be changed weekly, if not more often. The port can’t be accidentally pulled out. The port can not be seen where as the picc is in the arm.
    I have never had a patient with low platelets have a problem with bleeding from accessing a port.
    Just be sure Bob receives platelets the day of his port. He won’t regret getting it. Every patient that fought me on getting a port, after getting it in said why did I wait so long?

    #17989
    JSRN
    Member

    My mom is also on Vidaza and it was a God send when she could get it IV route. She has had a port for 5 years.
    As a RN I can tell you the port has less risk of infection. Both picc and port can become infected. But the picc is an open source. The dressing has to be changed weekly, if not more often. The port can’t be accidentally pulled out. The port can not be seen where as the picc is in the arm.
    I have never had a patient with low platelets have a problem with bleeding from accessing a port.
    Just be sure Bob receives platelets the day of his port. He won’t regret getting it. Every patient that fought me on getting a port, after getting it in said why did I wait so long?

    #17990
    Terri
    Member

    Thanks for the Info JS- I am almost positive they will be putting a port in before his next round only for that as well as any needed transfusions. He needs plts occassionally that is usually his problem and sometimes red blood as well. But we were excited when the IV was first approved and at the time the dr did not want to risk the Procedure to put the port in since Bob has had so many steps backwards, the Brain bleed (he recovered fully, I thank everyone for prayers, The intesttinal bleed and now He gets blood blisters from the Vidaza shots on his arms and on the areas where they insert IVs for Transfusions. So I am positive the doctor will be opting for the Port and he has guaranteed us he will boost the plts up before the procedure.

    #17991
    SandyB
    Member

    When you all say that the Whites fell for a while, how long do you mean? Mike’s have been down to the 1.5 area for about 8 weeks, and so his Vidaza was suspended.

    This followed an ear infection and hospitalization.

    The Dr. is waiting for them to come back up to resume. How high were they when Vidaza was resumed for your loved one?

    I am very concerned, as Mike has gone into AML, once before.

    #17992
    Terri
    Member

    Sandy, WBC’s are never low enough on Bob for that concern, He is just the opposites. The whites are always elevated. It is the is the plts and hgb they watch. They do watch the Granulocyte count whichi is connected to the whites and neutrophyls but so far he is ok on that end. Sorry I am not much help.

    #17993
    SandyB
    Member

    Terry,

    You are always a help, just by being you.

    I truly pray that you and Bob had a wonderful trip. It is so important to do whatever you can to take a break from this stuff.

    #17994
    Maryvillepat
    Member

    We’ve FINALLY gotten some good news after three cycles of Vidaza for my husband, Chuck. Today he began his fourth cycle, and the doctor said it’s finally working. He hasn’t needed any TX for two weeks, and his hgb was 11.6. That’s the first time it’s been in normal range for about a year, I guess. He’d been on Vidaza, then went on Revlimid, which didn’t help, and the doctor wasn’t sure Vidaza would work this time, so we were pleased about the good news today. Greetings and blessings to all. Pat

    #17995
    eve
    Member

    dear pat

    YIPPEE

    eve

    #17996
    Terri
    Member

    Bob is on his Second round of the higher doseage. And he was doing good but still having problems with the blood blister His whole arm where he had the last set of Transfusions back the end of April is still taking a toll on his counts. THe Plts are too low for him. Last week Hgb up to 10/7 which we thought was great this week 9.3 due to the Vidaza and the fact The arm dried up as they told us to keep it uncovered during the day it is now cracking and bleeding. Tomorrow we see a Wound Care Specialist. We have spent more money in gauze and wrappings I could buy the store. But I wish there was something they could do. Now we are moisturizing it with Neosporin etc to keep it from cracking. I hope the wound care place has some answers. Thank God No Infections.
    If it wasn’t for this Bob is feeling good.

    #17997
    Terri
    Member

    Oh and No Port they can’t get his Plts high enough even with transfusions they don’t come up enough a six pack as they call it only brought him up a few points and The are telling me if he started bleeding during the procedure it is not an area they can put pressure on to stop the bleeding with his plts so low.

    #17998
    JSRN
    Member
    Quote:
    Originally posted by Terri:
    Oh and No Port they can’t get his Plts high enough even with transfusions they don’t come up enough a six pack as they call it only brought him up a few points and The are telling me if he started bleeding during the procedure it is not an area they can put pressure on to stop the bleeding with his plts so low.

    What are his platelets? What do they want it to be? Above 10, 30, 50? I don’t understand this. Have they tried giving him a 6 pack the day before and then the day of the surgery, give him more? Some people need more than a 6 pack. I have given numerous 6 packs to patients in order to get them prepared for a procedure. Sometimes the procedure just has to be done. I think your husband needing a port is a necessity.

    #17999
    eve
    Member

    my dad had many bags of platelets before a procedure he needed – they wanted to bring his platelet count above 40 – it wasn’t happening because his spleen kept on absorbing the platelets – they finally decided to do the procedure at a count of 35 – thank goodness he had no bleeding

    eve

    #18000
    Terri
    Member

    JS Plts are around 29 and once they get under 30 Bob does not due well as I indicated we are having a hard time with his arm blood blisters and part that have opened and can’t control bleeding. Actually saw the wound care specialist today. They want his plts up closer to 80 and even when Bob was in the hospital with the brain bleed they bombarded him with platlets to see if he could get any relief from the blood pressuring his brain. They plts never even got to 60 or higher. They were giving him Single doner even which is the best for platelets.
    Bob has had so many times with bleeding – last May the brain, then Last August intestinal. Now all of the blood blistering and bleeding from the shots They will not chance the port.

Viewing 13 posts - 16 through 28 (of 28 total)

Register for an account, or login to post to our message boards. Click here.

  • You must be logged in to reply to this topic.

Login

Login

Search Forums

Review answers to commonly asked questions or get answers to your questions from an MDS expert