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This topic has 38 replies, 1 voice, and was last updated 19 years, 2 months ago by alexandra7.

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January 19, 2005 at 1:33 am #3253

Jimbob
Member

Drew,
I was fortunate to work for a company that put me on short term disability at 75% pay as soon as I was DXd. I am now on long term disability at 60% pat and able to keep my isnurance as long as I pay the premiums. She should check with her employer to see if such is available.
Also, check with life insurance to see if she has waiver of premiums or advance benefits payment. Regardless, do what you can to keep her spirits up and her attitude positive. I think that is an important key. Jim

January 20, 2005 at 8:05 pm #3254

Palacelaw
Member

Hi,

My mother had her third injection of Vidaza today. She is feeling very tired and has rashes around the injection sites. She also has lost some of her appetite and loose bowel movements. Her doctor gave her some pills for the nausea but they seem to be wearing off. Does anyone have any ideas as to how to combat the nausea and loose bowels?

Thanks for all your help. I really appreciate it.

January 20, 2005 at 8:41 pm #3255

eve
Member

my dad never has loose bowels when he is taking the vidaza-as a matter of fact he is usually constipated – the constipation comes from the anti nausea drug he takes zofran

good luck

eve

January 21, 2005 at 5:48 am #3256

Naomi
Member

Hi Drew:
One of the side effects of revlimid is diarrhea. The doc told me to take Imodium and I can usually get by with one pill as needed. I was afraid that it might go the other way, but has not.
Be sure to ask her doc before doing it.
Naomi

January 21, 2005 at 3:26 pm #3257

Terri
Member

Drew, It is the same here, I am the primary breadwinner we depend on my income and my Medical insurance that I have for my husband, At this point Bob does not have disability and since I am still able to work and carry the insurance much of our expense is picked up except for the Co pays.

If your Mom can’t continue to work she would have to look into an insurance conversion which can be costly.

February 1, 2005 at 4:31 pm #3258

Palacelaw
Member

Hi my mom has been on Vidaza for a week. Last Friday she received got her CBC results and all of her levels (white blood cell, hemoglobin, red blood cell and platelets are drastically down – the lowest they’ve ever been). Today the doctor is giving her two units of blood. She is also taking Procrit shots once a day. Is it normal for her levels to go so drastically low after one round of Vidaza?

February 1, 2005 at 4:34 pm #3259

sarah
Member

How low are her counts?

February 1, 2005 at 4:44 pm #3260

Palacelaw
Member

I don’t have the stat sheet with me but I know her hemoglobin dropped to 7 and her platets down to around 110

February 1, 2005 at 5:23 pm #3261

doreen
Member

Jimbob, Sorry to interrupt this post but I had a question about one of your comments.. You said your company put you on disability as soon as you were diagnosed… I am curious as to why they did? I am still working full time and am really tired, alot is because of emotional stress. No one has mentioned NOT working at all. Thanks.

February 1, 2005 at 5:50 pm #3262

sarah
Member

Doreen, how are you doing? Are your counts holding?

February 1, 2005 at 5:54 pm #3263

Joannie
Member

Hi Drew,

So sorry about your mom. As has been said the disease is very individual. I know it can be terrifying. I would try to get her to see someone in a center of excellence. Where she is so young I would definitely ask a bout a bmt, mini or full. Best of luck and remember if you need to vent we are here for you. Joan

February 1, 2005 at 7:14 pm #3264

doreen
Member

Sara,

I was diagnosed last april. Since then, they have not wanted to put me on anything as they are afraid to ‘rock the boat’ My WBC is about 3.9, Hemoglobin is 12.0 and platlets are at 38,000. That is my biggest concern.. They are continuing to go down. I get monthly blood tests are I am currently waiting to have a BMT done. Thanks for asking!

February 1, 2005 at 10:27 pm #3265

Neil
Member

Hi Palacelaw,
Most patients on Vidaza experience a decline in counts just after starting. They should start to increase soon. Can be a difficult emotional experience waiting for the increase. Not sure how long it takes. Seems to vary a bit between patients.

February 1, 2005 at 10:51 pm #3266

Suzanne
Member

Doreen, you may be able to qualify for social sec disability with platelets that low and a BMT ion front of you. worth a try.collect copies of all your own test results and send them in with your application plus a description from one of the sites of what this disease is all about and your fab classification etc. Someone on a forum advised me to when I was first diagnosed and I am so glad they did. Suzanne

February 2, 2005 at 5:44 pm #3267

Palacelaw
Member

My mom’s counts dropped to: hemoglobin 7.7, platelets: 151, white blood cells 4.09
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