New to your group

[Relaxson]

Hi..I am new to your group. Was hoping someone had some info. My dad went thru the Vidaza treatment and went into remission now 6 months out he has just been told he is comming out and is in stage 2. Does anyone know if the treatment can be done twice (the oncologist said that there is no treatment at this time)
I was reading about the pineapple and black seeds what do they do and how much we will try anything.
Thanks!

[Suzanne]

Hi! Others have experience with pinapple and seeds. I think they can help but not replace treatment. However, don’t get too discouraged. There was a period when I had MDS that I was told there was nothing available as far as trials-qand I had participated in one that did not help-nothing was approved then- however as soon as it escalated to AML I had induction and consolidation chemo plus the zarnestra trial . That was the turning point for me. Prior to that everything had been very discouraging. Hope things turn more hopeful for your Dad.What type of MDS does he have? Hang in there.

[Kathryn]

Hi, I just wanted to welcome you to the group.. It is a wonderful forum where you will find so much info., support & encouragement.

Best wishes to you and your dad.

Kathryn

[shirlsgirl]

Hi there,

Just want to say hello, and welcome! I’m sorry you had to come looking, but glad that you found us.

My mom hasn’t tried vidaza so I am not very much help to you, but there are alot of wonderful people on this board who may have more info.

What classification is your Dad? Is he being treated at a centre of excellence?

take care,

Jody

[Terri]

Hi, The same thing happened to my husband did six rounds of Vidaza last year and then his counts held their own for 7 months . At that point blast started increasing. Doctor started him back on the Vidaza one week on three weeks off. for Six months, His counts have gotten better and doctor thinks he is making some good cells, He is now one week on and six weeks off. Our Dr feels since there isn’t much information on the drug as far as maintaining he is going to continue it since Bob is responiding and see how far he can spread it out, rather then be off of it again and then The blast come back in another 7-9 months. He figures this way may keep him from transferring to AML.
We also do a lot of supplements and vitamins

[Relaxson]

Thank you so much for your information. My dad take a lot of vitimans also have you heard about the B17 (apricot seeds) That will be his latest try. I just ordered them for him.

[Relaxson]

I will have to ask my dad on all the HX so I can have a signature too. He is being treated in Round Rock, TX his doctor is wonderful!

Thank you everyone for such a wonderful welcoming! I’m trying to get my mom on line from Austin as well so look out for her

Kara

[mskarelyn]

Hello
My dauther Kara has urged me to join your forum.
Amglad to hear that some Drs are doing a second round. Sure gives us some hope. Jims Dr is saying that he has no plan until the numbers get worse.
Thanks in advance
God bless all of you ging thru these trials
Karelyn

[Relaxson]

Wow I am impressed my mother figured out how to use her computer!
Welcome mom hopefully you can share your story with others on this site as they will theirs. I’m sure you will find others that can offer advice and that have shared your same experences.
Kara

[Suzanne]

Welcome to kara’s Mom,karelyn. Don’t be surprised at the waiting advice. My Dr’s did the same thing in the beginning. Then when things did get worse they really turned lose and got aggressive. I was thankful that they were keeping in mind that I wanted as much quality time as possible to enjoy whatever time I had. It worked well for me. Hope it does for your family.

[Terri]

We see the doctor On the 12 of july will see what he says about Bobs blast

[Suzanne]

Good luck with that appointment, Terry. I will be watching for news from you.

[kristyk]

Kara and Karelyn
My Mom is same game of wait. This has been the greatest source of frustration for me as daughter. You will find good info and support from the folks on this forum. My father was Vietnam Vet as well…and career army officer. Dad passed suddenly of hear attack at age 59 a few years ago. I always find kindred ties with other military folks, so give your Dad my sincere regards. My mom and I often wish our “old Bird” was here with us as she fights the fight of her life. Best to you all. Kristy

[Relaxson]

Kristy.. Thank you for your kind words. Sorry to hear of your fathers sudden passing but I’m sure he is with you both!
Its wonderful that you are there for your mother. I wish I could live closer to my parents to help out. (I think the 15 phone calls a day makes it feel like I am) LOL (Mom ya know you would miss me if I didnt call
Have they given you an idea of when they are going to do the decitibine trial? What is this medication used for? Has she tried the Vidaza? I haven’t learned all of the different MDS and medication uses yet.
Good luck to you both! Keep me posted.
Kara

[kristyk]

Kara
the particular decitibine study they have in mind for my mom is specifically for “older” AML patients. However, my mom continues to hover near AML but techniclly remains MDS ( bone marrow blasts have to be at 20, she was 18 one month ago) There is decitibine study for MDS at her center, but Dr seems to be holding out for the AML study..which means we are waiting for her to get worse!?! both the decitibine and Vidaza are similar low dose chemo meds. Decitibine apears to have lower toxicity than Vidaza. Appears that a small perecentage of people respond to the meds, but if they do, like your dad, a remission, even if temporary, is possible. I think they are hoped to stimulate healthy cell growth. We go back to study doc next week and will see if counts etc indicate doing another BMB to see if she qualifies for study. IF NOT, my hope is that they suggest something in the meantime. What is your Dad’s diagnosis? And yes, I am pleased that I live only a few hours away..and can be there every weekend and for doc apps. I am her main support. Even though you can’t be geographically close, sounds like you are tremendous support for you Mom and your Dad. Funny how things shift in a split second. I went from being the “kid” to the caregiver on 2-25-05…my head is still spinnng and I still have not got this thing figured out yet! Take care. Kristy And fyi..does your dad go to a cancer center in round rock? I went to Highschool in Austin. Have they considered going to MD Anderson for consult?

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