Tecia: I haven't started my treatment, but it's probably either Dacogen or Vidaza that Mom is receiving. It can be a drip or IV. It's not as aggressive as I received for Breast Cancer, no hair loss this time. My own doctor is great at answering emails, perhaps Moms doctor would consider sending you updates. In addition, I have blood drawn every two weeks and I ask for copies to be mailed to me.

Mom probably had a bone marrow biopsy before she started treatment and my doctor says he'll do another at the end of 4 cycles to see if the treatment is working. You may want to ask if it has been or when and if it is going to be scheduled. The doctor may put off answering your question regarding life expectancy until then. The doctor should give you the diagnosis so that you know what you are dealing with. Hopefully it has not progressed to Leukemia.

I'm sure you are frustrated regarding all of this. It's not an easy journey. Hang in there. Hugs!

Tecia: I haven't started my treatment, but it's probably either Dacogen or Vidaza that Mom is receiving. It can be a drip or IV. It's not as aggressive as I received for Breast Cancer, no hair loss this time. My own doctor is great at answering emails, perhaps Moms doctor would consider sending you updates. In addition, I have blood drawn every two weeks and I ask for copies to be mailed to me.

Mom probably had a bone marrow biopsy before she started treatment and my doctor says he'll do another at the end of 4 cycles to see if the treatment is working. You may want to ask if it has been or when and if it is going to be scheduled. The doctor may put off answering your question regarding life expectancy until then. The doctor should give you the diagnosis so that you know what you are dealing with. Hopefully it has not progressed to Leukemia.

I'm sure you are frustrated regarding all of this. It's not an easy journey. Hang in there. Hugs!

Tecia: I haven't started my treatment, but it's probably either Dacogen or Vidaza that Mom is receiving. It can be a drip or IV. It's not as aggressive as I received for Breast Cancer, no hair loss this time. My own doctor is great at answering emails, perhaps Moms doctor would consider sending you updates. In addition, I have blood drawn every two weeks and I ask for copies to be mailed to me.

Mom probably had a bone marrow biopsy before she started treatment and my doctor says he'll do another at the end of 4 cycles to see if the treatment is working. You may want to ask if it has been or when and if it is going to be scheduled. The doctor may put off answering your question regarding life expectancy until then. The doctor should give you the diagnosis so that you know what you are dealing with. Hopefully it has not progressed to Leukemia.

I'm sure you are frustrated regarding all of this. It's not an easy journey. Hang in there. Hugs!

Boy Becky did you see how many times they posted your same answer LOL? There was a real blip in the road when you replied.
Cat

Really was a bump in the road, need a detour.

Thanks Becky Jean your words of encouragement mean the world and I love this group it has given me a peace I was all up in arms and then I found this forum and just reading that others are experiencing and have been where I am ....well it really helped my nerves ALOT....so I am here also to listen and to encourage we will get through this all together if any of you are on fb My name is letecia Cunningham....thanks to everyone.

Lol@cat .........God meant for me to see that reply so he made sure it posted 4 times....lol

Good Evening everyone OK so my is on vidaza I emailed her doctor asking questions and waiting for a reply.....how is everyone? Hope you all are staying encouraged and keeping your spirits high.....I know its a good day bad day kind of disease ...even for me I have my good days and bad days trying to deal with wrapping my mind around everything .....Talk to you all again soon.

Tecia.. That was weird I just tried to leave a message and it disappeared. So I will do it again. I know it is hard wrapping your mind around this and how hard it must being so far away. Just keep contacting her doctor. If you don't get the answers you ask questions about ask again and again..Does she have someone to take her to and from her appointments? The cancer society has people who will help if she needs it. My thoughts and prayers are with you as with everyone else..
Cat

Mom's blood dropped again today so another transfusion in the morning ...........getting frustrated ........when is this vbidaza gonna work.

Tecia, I know this is difficult for you. My own daughter is feeling this same frustration as she is 3,000 miles away. I hope the doctor is responding to your emails. When did Mom start treatment? I understand it takes about 4 months to know if the Vidaza works. It does lower the immune system in the process. There are others that can answer this better than me.

Tomorrow I find out what is in store for me and when treatment will start. I've had a reprieve twice but that's it. The writing is on the wall, the bad guys are winning. Dec. BMB showed increase in abnormal cells.

Hang in there dear friend and know that we are here for you. Hugs!

Thanks Becky Jean my mom started vidaza in sept, and seems like she is getting transfusion more and more reguraly, its hard not being there so I feel your daughter......but I will be praying for you Becky we will all get through this .........good days and bad days ....but still one day at a time

Tecia when are they doing another bmb on your mom? is she getting the neupogen shots after her week of vidaza? I don't know what I would have done if I had been far away from Dad. bless your heart! hang with us hon!

Not sure what is a bmb ? As for the shot after the chemo once again not sure and the sad part is ....is that she really does not know or care to talk about it her way of dealing with it is ignoring it.....but that is killing me cause I don't know how far she is along with this I think she has had it at least 2 years she is 85 and getting transfusions every couple weeks

Tecia: This journey is not an easy one and I can understand Mom's feelings, especially with her age.

We are all in different stages of this disease. I've had it several years and it progressed slowly and just monitored the blood levels and had Procrit or Aranasp shots on a regular basis. However, once I became transfusion dependent, transfusions in Sept, Nov. & Dec. the treatment will be more aggressive.

When I saw the doctor on Wed we decided to go forward with treatment. As I understand it with Vidaza, Blood transfusions (BT) will be frequent as the blood levels will drop. Mom should also receive a shot after the 5 days of treatment to decrease the chance of infection and help restore the immune system. As I said earlier there are some that have more knowledge of Vidaza treatment than I do.

My doc did a Bone Marrow Biopsy (BMB) before starting treatment and will do another after 4 cycles to see how it is working. If Mom started treatment in Sept she should be due another BMB about now.

Hopefully Mom's doctor will keep you advised of her treatment. Perhaps Mom needs to give permission. Is there another family member with her?

Remember we are all here for you.
Blessing to all and stay well. Hugs!