Mom's diagnosis

[kwaidz]

Hi all. My mom was diagnosed with RAEB MDS with intermediate risk on Monday morning. Although I was at the dr's office with her, we didn't know what questions to ask. The doctor referred me to www.cancer.gov which gives some very grim and frightening statistics. After seeing those stats on the website, I started looking for more information. Thanks to some of the posts here, I now feel better prepared for the next visit - in one week. We are still waiting on the cytogenetics test and the dr. thinks the next course of action should be vidaza. I don't know what her blast levels are nor her blood counts. She has been low in platelets and RBCs which started this whole roller coaster.

I am looking for references for the best doctors in the Dallas area or in Texas and anything else that can help up fight this. Mom is 63 and has a 5 month old granddaughter to see grow up. I'm terrified of losing my mother and want to find the best ways to help her.
Thanks for reading this far....
K

[triumphe64]

Here is the website for the AAMDS organization.

http://www.aamds.org/

Call them and ask for Leigh Clark. She will be very helpful in getting information and help for you.
http://www.aamds.org/support-and-com...tient-educator
They were off two days because of the storm, so they might be a little behind.

As far as doctors go, Dr Robert Collins at UT Southwestern spoke at the recent patient family conference in Dallas. He is the one I would choose if I had MDS.

http://www.utsouthwestern.edu/fis/fa...t-collins.html

[Neil Cuadra]

Originally Posted by kwaidz

Hi all. My mom was diagnosed with RAEB MDS with intermediate risk on Monday morning. Although I was at the dr's office with her, we didn't know what questions to ask. The doctor referred me to www.cancer.gov which gives some very grim and frightening statistics. After seeing those stats on the website, I started looking for more information. Thanks to some of the posts here, I now feel better prepared for the next visit - in one week. We are still waiting on the cytogenetics test and the dr. thinks the next course of action should be vidaza. I don't know what her blast levels are nor her blood counts. She has been low in platelets and RBCs which started this whole roller coaster.

K,

Her diagnosis of MDS subtype RAEB (refractory anemia with excess blasts) tells you that her bone marrow blast count is high, and you know that her red blood and platelets have been low, but it's still worth getting copies of the test results for reference and to help you understand your mom's condition.

The cytogenetics might show that she's a good candidate for Revlimid, another front-line treatment choice, but otherwise the recommendation for Vidaza matches the advice many other patients get in circumstances like your mom's.

I am looking for references for the best doctors in the Dallas area or in Texas and anything else that can help up fight this. Mom is 63 and has a 5 month old granddaughter to see grow up. I'm terrified of losing my mother and want to find the best ways to help her.

I agree about UT Southwestern. If you want another choice, although farther away, the MD Anderson Center in Houston is one of the best in the country.

[kwaidz]

thank you for your responses. I'll call to set up a second opinion appointment. When I talked to Leigh at AAMDS she said that Baylor would have specialists too. Is there anyone in the Baylor system you would recommend?

[triumphe64]

Originally Posted by kwaidz

thank you for your responses. I'll call to set up a second opinion appointment. When I talked to Leigh at AAMDS she said that Baylor would have specialists too. Is there anyone in the Baylor system you would recommend?

I don't know anyone at Baylor. I went to their website and found four possibilities. They are:
Edward D. Agura
Luis Pineiro
Joseph W. Fay
Moshe Y. Levy

Best of luck.

[bebop]

if you can go to all your mom's appts with her. get a copy of every blood test. you can kind of tract what is going on that way. ask lots of questions.

[kwaidz]

Originally Posted by bebop

if you can go to all your mom's appts with her. get a copy of every blood test. you can kind of tract what is going on that way. ask lots of questions.

This is great advice. I'm currently trying to get copies of the blood tests. We're in the process of setting up a second opinion and getting all the test results to the new doctor. I feel like I'm climbing a very steep learning curve in a short amount of time.

The question list seems endless.....

[kwaidz]

Originally Posted by triumphe64

I don't know anyone at Baylor. I went to their website and found four possibilities. They are:
Edward D. Agura
Luis Pineiro
Joseph W. Fay
Moshe Y. Levy

Best of luck.

Thank you for your help. It is nice to have advice from folks who have been there. We're setting up a second opinion and getting test results and medical records released. I've got to get a copy of everything to try to make this process easier.
k

[bebop]

hon this ride is a huge roller coaster ride for sure! it seems everyone is different because there are so many variations of this stuff. don't be afraid to ask anything at all. you might think it a silly or dumb question but those don't exist here! good luck with the second opinion!

[Cam]

Yeah I can attest to this being a roller coaster. Even when you finally find out what is wrong then you have to find the right treatment and in some cases wait for it to happen...

[Bambam]

Hello K, I too am 63 with RA MDS and Intermediate to Low Risk. Because I do not "fit" into a box, I asked my Hematologist for a second opinion and was referred to the top MDS Specialist in Vancouver, Canada who I saw yesterday. He took an exhaustive history - asking where I had lived at different stages of my life (city, rural, agri etc.) asked what were the types of industries in those areas (in UK), asked family history, symptoms, etc. etc. It took over an hour and he told me he was a little late seeing me because they had had a conference about my case beforehand. I was told that at 63 I would still be a good candidate for BMT and that he would start doing some bloodwork to determine immune response etc etc. I went to the laboratory at the hospital - and 19 vials of blood later - returned home. I tell you this because I am very anxious about this diagnosis a) because my risk puts me at living 5-10 years and b) because I want to see my grandson graduate (he is 7) However, I want you to know that the taking of that exhaustive history as well as his confidence that I am NOT too old for BMT, made me feel well looked after. I strongly suggest you get copies of every blood test and track them in a spreadsheet if possible. If not, file them in a binder by date and take them to each appointment. Ask lots of questions and if possible, have them written out beforehand so you can record the answers. I probably only hear about 50% of what is said, so hope my hubby catches the balance
Your mom is lucky to have a daughter that is so caring and wants information that will ensure the very best. I wish your mom the very best and encourage you to keep posting questions and hopefully we can help through our experiences. As somebody said, lean into it, and remember to take a deep breath. Big hug, B

[kwaidz]

Dacogen vs. Vidaza, blast count, clinical trials, mini transplant, reduced intensity transplant....my head is swimming. We went to my mom's second opinion appointment this week. The new doc said the original BMB's sample wasn't great and he wanted to redo to the test. Blood work and another BMB ensued. Lots of tests, lots of history and another wait for all the results. We go back on Monday for the results.

Right now, the planned course of action will be Dacogen followed by a BMT early next year. Mom has 2 siblings which will be tested as well as checking the registry. It's going to be a long 2013 I'm afraid.

What are some of your personal experiences with Dacogen? I've read about side effects but I'd like to know some practical ideas for helping her through.
Also, how do you prepare for a BMT - still trying to imagine all the ancillary "stuff" that will have to happen...

thanks
K

[milliken2]

K;
For certain, start keeping a journal/diary of how your Mother is doing, and get copies of all of her blood work, her bone marrow biopsies, and any other test she may have done. This way, when you go to another facility, you will have all of her medical records, and they won't have to wait for things to be faxed from different facilities.
My husband had 5 sessions of Dacogen with no positive results. He is now on Vidaza - has had 3 sessions, and is due to start his 4th next week. To be honest, I don't see that it is doing anything either since his transfusion level is at least once a week for PRBC's and usually twice a week for platelets. The weeks he is on treatment - he will most assuredly get both twice during that week. He has continued to lose weight, and his appetite is low. It may be a bit 'premature' but it is a good idea to have a bottle of 'Swish and Swallow Magic Mouthwash' on hand in case your Mom starts to get mouth ulcers - this way, you have it on hand.
And make sure that you write any of your questions down - start a document on the computer, and keep adding to it as you think of another question. Then, when you do go to the Dr - no matter which one it is - you can print the questions out and take them with you. I always leave room to write the Dr.'s response down so that I can really remember what he said later on - as it can be very confusing.
Good Luck to both of you.

Beth