[KWJ]

He finally started it Thursday. Took a month to get it all going. A month we really don’t have. He is really weak.

How is your Dad doing?

[KWJ]

My dad just started the Zarnestra Trial on Thursday, That was his only option as his health is not very good. We are so hoping it will help.

Good Luck Russ I hope your option helps keep this nasty disease at bay for a few more years!

[KWJ]

Eve – I am so sorry to hear this. I am thinking of you and your family today.

[KWJ]

Oh Jack that is great news. I hope your fever gets better soon though.

My dad is supposed to start this soon, but it is taking awhile I guess to get all the paperwork done. I hope they hurry, so maybe it would help him. He seems to be really struggling right now.

[KWJ]

http://ubb-lls.leukemia-lymphoma.org/cgi-bin/ubbcgi/Ultimate.cgi?action=intro&BypassCookie=true

Here’s the link Sandy.

[KWJ]

His health is not good enough for the chemo induction. He was set up for a mini SCT in Nov but then they found he had progressed to AML. He was at the Hutch , a well known cancer center. They sent him home because they said there was nothing more they could do. I agree it is strange because he was approved to do the SCT but won’t make it through induction?? I guess his chances at the SCT were low too.

He is going to try Zarnestra, we are so hoping that helps. His white cells were at 39,000 but they put him on meds for that and now they are at 24,000. He was having a lot of bone pain.

I hope you Dad has better luck with the induction. My thoughts and prayers are with you guys.

[KWJ]

Glad he was able to do the chemo! Good luck to you guys.

[KWJ]

My dad is starting Zarnestra in a week. I hope it works like it has for you Jack.I am praying. He is at 22% and starting to have bone pain. They started him on a med to help with the white cells that are now at 32,000. Weird that when you have MDS you want high ones, and now that is a bad sign.

[KWJ]

I appreciate your info too. It is hard I am sure to talk about but I want to know what to expect. My dads docs have said he may have a year but it seems that all teh info I read says more like 3 months so I worry all the time. Thanks for this so much.

I too in the same position as the original poster. Dad was dxed with AML last month after his original MDS dx in Jan. He is driving himseld mostly to his transfusions but he can’t do chemo. He has signed up for a trial of zarnestra now at OHSU. That should start in 2 weeks. I don’t know what to expect either. He sleeps alot, but has good hours every few days. Really depends on when he gets platelets and reds.

Take care.

[KWJ]

What a strong and amazing woman you are. I am so sorry that this horrible disease has come into your life and all of ours here at this site.

I was so hoping you and Mike would have a different outcome. It seems my Dad and Mike have similiar paths so I was hoping for sucess for one of them.

I will keep you in my thoughts and prayers. I seem to be praying a lot these days. Take care.

[KWJ]

Good news here. I think we all need it. I hope it continues for you Zoe. Happy Holidays.

[KWJ]

Sandy I am so so sorry. I am just stunned. Words can not express how horrible I feel for you and your family.

[KWJ]

Good news Terri. I hope he continues to hold his own against this disease. Have a Merry Christmas with those grandbabies!

Kids are so much fun at this time for year!

[KWJ]

When my Dad had Sweets – he was not yet to AML. But we did feel like the nuepogen shots accelerated it. Also after the Sweets his blasts went up. He was still at 12% several months after he recovered from Sweets. He was at 5% before. Then in Nov he was over 20%. Within a 2 month window he went from 12% to over 20% and AML.

I am sorry for your dad and you. Vidaza did work for my Dad in the beginning. Hopefully it willwork for yours.

[KWJ]

Lets just pray it works. I am sorry I have more questions thans answers. Please keep us updated. You guys are in my thoughts.

[Author]

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