Ron

[B. Greene]

It is extremely difficult for me to write. When the Dr. came in with tears in his eyes I knew we were in big trouble. Ron has relapsed again. The trial med didn’t work. They are offering us very little hope and few options. Hospice, another heavy round of chemo using Mylotarg and Ara C which he stands little chance of surviving, due to his horrible gastro problems,and with a poor chance of another remission and if achieved not long lasting. The other option was to make him as comfortable as possible using Hydroxyurea to keep the blast down along with tx.

It is apparently very aggressive and if it keeps on as it is we can expect very little time.

I am writing to see if anyone has gone the route of the hydroxyurea. It apparently will keep all the counts down which right now are already zip.

We were so hopeful the clinical trial would work and to look at him you wouldn’t think there was a thing wrong so this was a horrible blow. Such hell, one week ok the next getting a tx and .05 ANC. They had just attributed his low counts to the drug—–

We both appreciate so much what you have done for us in the past so here I am calling on you once again for advice or know about the Hydro. If anyone has any other ideas please let us know because we are pretty much near the edge here.

As always thank you. Barbra

[eve]

dear barbra

i was very sorry to read you post – i
can’t give you any medical information about the hydroxyurea – but i can offer you my prayers that something can be found that will help ron get this disease under control

eve

[Sad About Dad]

Barbra,

I am so so sorry about Ron’s relapse. My prayers are with you. I know that doesn’t help. But I am sorry.

[LisainOk]

Barbara,
So sorry, I hear the pain you are experiencing. My prayers are with you and Ron.
~Lisa

[Neil]

Hi Barbra,
So sorry to read about Ron.
Don’t have any thoughts on Hydroxyurea.
Have Ron and you in our thoughts and prayers

[shirlsgirl]

Barbra I’m so sorry.

There is a Leukemia Treatment priority list, you may have already seen it…maybe there is something on the list that has been overlooked.?…also, the MDAnderson Center website has a box “contact us” perhaps they’d have an idea?

http://www3.mdanderson.org/leukemia/priorities.html

It sounds like Ron has a wonderful doctor. Please do not give up hope. Thinking of you both.

Jody

[geebeebee]

Barbra,

I’m so sorry to hear about Ron. I know the doctors will do all they can to keep battling this.

We’ll all be thinking, praying and pulling for you.

Greg

[CMH64]

Oh Barbra, I am so sorry to hear of Ron’s relapse! He is a fighter and so are you! If there is a way you and the Drs will find it. Keep your chin up! We will be praying for the strength for you to continue to fight this horrible disease! Hang in there! Cathy

[poobail]

Barbra, I’m so sorry to hear this about Ron. I read that hydrea can have good results, but I don’t have anything good to say about hydrea from our personal experience. My Mom tried it for 6 days a week ago, and her counts have dropped down, and now we are facing the end. She had a platelets tx and blood last week, but has not been making any new platelets as she had a nose bleed all day Sat. Treatment wise, she was offered mylotarg, too, but didn’t like the low odds with the bad side effects, plus it would most likely kill her liver and she’s very protective of it after having a liver disease for 20 yrs now.

I pray you find a way to decide what to do, I know in our family it has been absolutely heart wrenching no matter which way you look at it. Good luck and take care of yourselves. Also a practical note, albeit depressing, please discuss as much as you can with him now cuz if it’s as aggressive as my Mom’s, he may be too sleepy to communicate with you. Margaret

[Sally_McNamee]

Dear Barbara and Ron,

I check the forum out every day to see how you’re doing, so I’m very sad to see that the news is not so good. I know how hard you’ve both tried and what a journey it has been.

I can’t give you any advice on treatment, but can talk about my experience with Mum. It’s a year, almost to the day, since I had to decide no more treatment for her and I have to say it was the best decision I ever made. We had six weeks where she was (mostly) very comfortable and sleepy and where, when she was awake, she was pleased to see me and could enjoy the chocolate bars I brought her. I wouldn’t have missed that time for anything.

I will be thinking of you both and hoping that something turns up.

Love

Sally

[Carrie]

I’m sorry to hear the news. I hope that they find something effective to treat him with.

Love,
Carrie

[sarah]

Barbra, you and Ron remain in our thoughts and prayers. I pray for a miracle.
God Bless,
Sarah

[Marsha]

Barbara,
First off I too want to offer my prayers for Ron, it is so heart wrenching when you have hope and then it is taken away. I can only offer what I know about Hydroxyurea, I was on that drug for 8 1/2 months for CMML while I awaited an MUD for a BMT. I had no side effects from it and it did stop my counts from going to low. I was pretty stable during the treatment and felt pretty good just alot of fatigue but getting used to that. I hope that the doctors will get in touch with others at other hospitals and try to figure out if there wouldn’t be something alittle less drastic for treatment. I hold you both in my prayers.

[Terri]

Barbara, My Heart felt like it was in my stomach when I read your post. You have been a strength and support to so many of us. I wish I had answers for you, I can only offer Continued Prayers for you and Ron.

[Naomi]

Barbra and Ron:
I am so sorry that things have not worked for you. I have no info on the drug, but prayers and thoughts are with you.
Naomi

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