[txnmomma]

Happy Belated Birthday!!!

How is the Dacogen [Decitabine] working for you? How are you feeling? Any side effects or reactions it?

Some have success with it while others do not have good success. I hope Dacogen works great for you!

[txnmomma]

Quote:

Originally posted by LynnI:
I sent him an email the other day, wondering how he is doing especially after seeing that his website is down.
I have not received a reply.

Has anyone had recent contact with him?

Lynn

Lynn..
I sent him an email last night [11/2] to check on him and see how he is doing. I have corresponded with him a few times over the last few months. I hope he replies. I will post something if he replies to me.

Wendy

[txnmomma]

Roger..

I hope all is well. Please keep in touch.

[txnmomma]

Quote:

Originally posted by Jack:
I have been on intermittent O2 for the last year, some times I don’t need it for as long as a week or two and then my 02 will drop to 70 and 80’s. I always use O2 at night. I have had several ct scans of lung, everything neg. They don’t have a clue what causes it. I also pass pulmonary function tests.
Jack

Jack thats really interesting!!
My father drops down to the 70 or 80’s super quick when he takes his nasal canular off.
CT scans of lungs have been done. He has passed pulmonary function tests. There is no pneumonia.
His sat levels just dont stay up.

[txnmomma]

Jack..

I dont get on this forum as much as I would like and I just noticed your wife has passed away. I am VERY to hear that. I read your posts alot and you are very insightful and knowledgeable.

She isnt suffering anymore, but I know you deeply miss her!

Wendy

[txnmomma]

Mary

Thank you for the suggestion of Desferral. I am going to write that name down and suggest it to my dad’s dr. I think I will just call him and not wait for another appt, since he gets tranfused weekly.

Thats a good idea about lowering the dosage. I am not sure about the ferritin. I have seen it recently but forgot what it was.

I am so glad I am able to talk to you!!

Wendy

[txnmomma]

I do have to say that he only had 2 rounds of Dacogen. After the 2nd round, he really seemed to change.. and not for the good. He wasnt healthy enough to start a 3rd round. He has regressed ALOT!

[txnmomma]

Mary

Quote:

The literature says to have it within 24 hours of your last chemo treatment. He never received it that soon after

When my father had his rounds of Dacogen, he was given Neupogen within 24 hrs of the last dose. He would be admitted into the hospital and administered the Dacogen. When he was discharge they had him go back to the hosp the following day at the same time of the day he was discharged. Let’s say he was discharged at 2pm. He would go back to the hosp the following day at 2pm for the shot. They gave it to him for 7 days. I saw a slight change in the WCC. Nothing drastic, but his nader period was not bad at all.

Jack.. thats a good insight, never thought about it that way. Thanks!

My dad has weekly tranfusions. He goes in on Wednesdays for CBC’s. He is usually at 6.5 or so, so he gets 2-3 bags of blood and this boosts up to 8.0 or 8.1– but the following week, he is back down to 6.0 – 6.5

[txnmomma]

Mary
I feel the same way as you. Something in the works available soon makes me happy.

The magazine says its a special issue.
vol. 7 no. 4– The front cover says “Where Are We Now?”

Frank & Bill
thank you for those links, I take a look at them.

[txnmomma]

Quote:

I can understand you wanting to do everything you can for your dad. I feel the same way about my husband and my parents. I thank God that I am healthy and can be there for them. I consider it a privilege.

Mary..
Thank you for writing this. I agree with you.
My mother and I are caregivers to my father.
My kids are very encouraging and love to be around “papa”

This is very encouraging for me!

Wendy

[txnmomma]

Roger..

*hugs*
I am going to email you know.

[txnmomma]

I will be emailing you some info asap

[txnmomma]

Roger..

I just emailed you right now..

[txnmomma]

Jeanette

I am so sorry to hear the dx about your father.
I can only speak from experiences with my father. Be supportive to him! I didnt know what to expect at first. Like all illnesses, I took the approach of ‘we can beat this’

My father has had this disease for 4 yrs and he is still going strong. He has his good days and bad days. In the beginning, like your father, he didnt show any signs of having MDS other than what a CBC showed on paper.

I would definitely be finding a good specialist for him. Someone who has knowledge of MDS and exactly what it is. Where we live in Texas, it hasnt been easy to find a real good dr for my father.

Research all you can about MDS… this forum here has helped me alot. Helped me to connect with other patients and family members who have the same problem.

(HUGS)

Wendy

[txnmomma]

Thank you so much for posting this about your brother. I am sorry to hear about your loss.

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