New MDS patient

[bluej]

I was diagnosed in 2/07 with MDS. Only treatment was transfusions and procrit for 8 weeks. Now, I’m taking Vidaza shots 7days, then off for 3 weeks. I’ve only had 1 set of shots. FDA recently approved an IV form of Vidaza, but my insurance co. says I have to wait 6 months before using IV instead of shots. The shots caused terrible bruising and knots under the skin. Maybe the IV would be better. Any one using the IV form? Also, I have -5 cromosome depleted, which is much worse than -5q. Anyone have this? How are you doing. I’m 55 and trying to learn all I can. Anyone have experience with Vanderbilt Oncology (Nashville, Tenn.) Please respond.

[Russ P.]

Bluej, You will find this forum very helpful. Try using the search to find posts to answer your questions. For example do a search for “Vidaza”. Regarding the bruising it is somewhat normal but make sure the syringes are shaken well before injection and is injected slowly. Perhaps having the Vidaza divided in 3 syringes would be better than 2. Don’t put ice on as it could cause the knots. If painful apply a cortisone cream. My main problem with Vidaza was constipation for a week. Best wishes – remember each patient is different and reacts differently.
Russ

[Carl]

bluej,

I have been to Vanderbilt Cancer Center many times as a secondary check on my local oncologist. They are very good and I would recommend that you go there. But, be sure to take their recommendations as only that, a recommendation, because they can sometimes be very agressive in treating MDS and you may not want to go that route at that time.

Good luck.

[bluej]

Thank you all for responding. I had 2 units of blood this morning due to a red ct. of 8.6 yesterday and the way I felt. I am still working at a school, but my husband and I have decided to check out disability options I may have. Very difficult to keep doing this. Know of any one who has been able to get disability with MDS?

Erma

[Terri]

Bluej, I am a caregiver, But my Husband Bob has been on Vidaza for several years. Its a mtc for him. If you see my user name and search some of my post I have documented on and off his updates which include so many ups and downs but He keeps fighting through them so Just keep a positive attitude, This forum has given me so much information.

[jaxem]

bluej
my wife was a school social worker but was forced to retire because of mds. the state of NJ and the NJEA considers the disease a disibility providing benefits accordingly.

[Ira N.]

Hi bluej,

Thanks for posting. I have just started receiving Social Security Disability checks. Go to: http://www.socialsecurity.gov/disability/ to sign up and/or get more information. Takes about 5 months from the time you apply so don’t wait. To qualify you must have worked X amount of years depending on your age and when you became disabled.

The money comes in real handy since I can no longer work. Good Luck!!

Ira

[bluej]

Thank you all for the info on disability. You made my day. I will be trying for the disability with the State of KY, as well as Social Security. And Jack, I too am a Social worker of sorts. My title is Family Advocate. Thanks again.

Erma

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