Sandra my dad's cancer policy did pay as it is classified now as a cancer. hope it helps you out with your expenses!

Sandra
Best of wishes with your upcoming BMT. You are in my prayers. I pray that all goes well. Keep us all informed with your progress when possible.
Have a blessed holiday!
Jamet

I must be having a rough day when I can't even type my own name right in the previous post :)
Janet

I have dates! I go to the U of M on January 10th 2012. I receive chemo on the 11th, 12th, 13th and 14th and on the 15th I rest. :-)
On the 16th will receive my brothers stem cells. I am excited and at peace. Thank you all for your prayers.
Janet: Sorry that you were having a rough day, but remember we all can mess up on our names.
Cindi: Thanks for the info on your dad's cancer insurance...I still have to get to that. Love you all...hugs...Sandra

Sandra congrats! my prayers and thoughts are with you!

Sandra, I am so happy for you. You are in my prayers.

My own blood levels continue to drop.We saw the GW doctor on Tuesday. Danazol was discontinued.

My new treatment will begin Monday, Jan. 9th. I did request a blood
transfusion before we leave for Alabama to spend the holidays with my grandson and I will be receiving 2 units on Dec. 20th at the local hospital.

However, there is some good news. The GW doctor has consented for me to have the treatment locally. However he is concerned regarding follow up care. So he recommended a colleague about 20 miles away who he feels would take good care of me. Some of my friends have seen Dr. Katzen and like him so I feel I would be in good hands. I just hope we have a mild winter or at least clear the days we go for treatment.

The other good news is that I will get shots (Vidaza)instead of the
drip. I will still go 5 days a week and return the following Monday for a shot (Neulasta) to restore the immune system. This will be repeated every 28 days. I am scheduled for a bone marrow biopsy on Friday, Dec 16th to see if there are any changes since July and to be sure this has not progressed to Leukemia. If so, the treatment would be completely different. Ill have another biopsy after 4 months of treatments.

The challenges are many but there isnt much choice. Life is good. You take one day at a time and make the most of it, enjoy it while you can.

Stay well everyone. Hugs!

Okay I must have chemo brain cause I sure am having trouble navigating through this site. I just want to post I am a new member and was diagnosed with MDS Nov. 6, 2011. I am already on my first round of Vidaza and I need a BMT. I have the next 2 weeks off until my second round begins. I have had 2 bone marrow biopsy's to confirm the diagnosis. I am 62 years old and am scared but plan to fight all the way. My dad died of MDS or AML.

Welcome Cat,
We are all at different stages of this disease. I am sorry to hear about your Dad, But happy to hear your positive attitude.

I was diagnosed after a BMB in 2009 but it was the BMB July 2011 that showed it had progressed to the extent that treatment was necessary. I was on Danazol for 4 months but the HMG didn't improve so I'll start Vidaza in January. Doc wanted to start earlier but we have 2 great grand children 7 & 9 and we wanted to spend the holidays with them in Alabama. I should say that we live in Maryland and I receive treatment in DC.

Did you receive the drip or shot.

I'll have a BMB next Friday before I start treatment. So just have to wait for the results until Jan. 3rd. Doc won't discuss further options until a BMB after 4 months of treatment. I'll be 76 next month so I'm not sure BMT is an option

Just remember Cat,you are not alone, we are here for you.
Hugs! Becky Jean
.

Becky Jean thank you for the welcome. I have the drip for Vidaza. The nurse said there could be a reaction at the injection site if you get the shots. So I went for the drip. It takes about 1 hour total for the drip. I am also having a transfusion Monday. My counts are really low. I feel like I am walking through very firm jello.
Enjoy the grankids they can make live so full of smiles and laughter. I have 3 and treasure every moment with them. They are 2 girls age 6 1/2 and 1 boy 3 1/2.
Keep praying and keep smiling. Just remember god never puts his phone on silent.

Just received the Carer magazine that the Leukaemia Foundation in Australia publishes, it seems a MDS/AML breakthrough has been made. The article states, Researchers from the Centre for Cancer Biology at SA Pathology led an international collaboration in identifying the inherited gene defects which predisposes some people to develop MDS and AML. The gene is considered the blood cancer equivalent of colon, breast or ovarian cancer gene.

Im glad to know that environmental factors have caused my MDS, but now I hope researchers will be able to answer questions like;
1. How do I tell my family that this is a gene defect and that they may need to be tested so that early monitoring can ensure that they stay well?
2. What if my siblings who are my donors have the gene defect, will they still be able to be my donor?
3. How soon will tests for this gene defect be available?
Its good they make these breakthroughs, now for a cure.

All is well, my MDS is manageable. I still have a low white cell and nuetrophil count. My last nuetrophil count was .98, so I had to watch for infections again. Platelets are low, but that comes with taking Revlimid. My last BMB showed a slight increase in the blast count and that 87% of my 5q chromosones are now normal. On diagnosis 100% of my chromosones had the 5q deletion.

Its good to see new Leaky Boat members and the occasional posts from older members.

Cheers
Rachael

Sorry I need to rectify a typo error, I meant to say, "Im glad to know that environmental factors have NOT caused my MDS, but now I hope researchers will be able to answer questions like;

Hey....just saw my last post was 1600.

Hi Aussie Racheal,
Where can I get a copy of that article? I am very concerned about my sister and boys getting MDS, also my nieces . My father passed after battling MDS and at the end we think he had AML. I was first positively diagnosed in middle Nov. of this year. I had my first transfusion today and boy do I feel better. yippy... Everything we hear and read said it was inherited. So please let me know where I can get a copy. I am having trouble navigating around this site. So I hope I get the answer.
Cat

Hi Cat
The Leukaemia Foundation has a website and they usually post their publications on their site.

The site address is below;
http://www.leukaemia.org.au/web/carers.php
Follow this link and look to the right hand-side of the site to News and Events as there is a direct link to the article.

I too am worried as I have a 12 year old boy and I would be devastated if he had the gene. The positive outlook is that the medical world will be closer to finding a cure. Look at the good work that's been done with breast cancer after researchers found the gene that causes that type of cancer.

Keep positive Cat, even though I know it can be hard at times, especially when youre feeling fatigued and generally unwell.

Rachael

Thank you Rachael for the info. I have quickly forwarded all the info to my family. And yes I am concerned about my BMT too. They are typing my sister to see if she is a match. She is 64 and all her blood test show she is okay. But as you said can they really tell without a BMB. All my blood work was fin in Dec of 2010. They Nov 2011 came around and within 3 weeks I am on Vidaza and they are talking BMT to live. Life is a crazy ride. We just have to hang on and keep smiling and laughing. Family is the best incentive we all can have. I pray that your son doesn't get the gene or any of his family in the future.
What part of Australia do you live in? My niece, nephew and great niece live there.

I apologize for all my typos. I need spell check.