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kedlee
Tue Sep 11, 2007, 08:30 PM
Mom was diagnosed with MDSin 04 and has been getting procrit shots weekly and it has kept in under control. A couple of weeks ago my Mom had a bone marrow biopsy done and it went horribly wrong with her getting a large hematoma behind her gluteal muscle and had to have surgery to remove the hematoma. She is still in the hospital with pain in her hip where the surgery was done and she still has issues with her leg from the Hematoma and cannot get out of bed on her own. She is only 65 and was in good shape up till this point. Now her doctor wants to start her on Vidaza even though she is basically bedridden with this other condition. She just started physical therapy yesterday and has made no progress in that department so I was wondering if it was a good idea for her to start the treatments in case the side effects kick in and put her in worse shape than she is now. Please keep in mind she was sedated for 7 days and took no solid food and very little fluid that whole time and she is only 3 or 4 days removed from being in this state and is just now getting to feeling better. Sorry this is rambling I am a mess right now.

margieinindy
Tue Sep 11, 2007, 09:08 PM
I'm very new to all of this, but I don't understand why the docs are in such a rush to start Vidaza treatments? Why STOP Procrit? Why now? Did they get the actual results from the Bone Marrow Test? I'm sure that wasn't the primary consideration after the hematoma situation developed, but is the result from the Bone Marrow Test the reason they want to start Vidaza? Anyway...I'm sure you have asked the doc all of these questions, and more, but I would want to determine the necessity of starting right now when your mom is already weak. As you well know, her counts count drop significantly and then she will be even weaker than she already is. Also, it's not like Vidaza has an instant response anyway, so if there IS some kind of emergency, I can't see how Vidaza will help with that. Plus, the shots are really unpleasant for some people. My husband just did his first round. Each treatment was two shots delivered under the skin and that amounts to 14 big bruises after 7 days (at least it did for my husband--his platelets were low which probably didn't help matters). And his hemoglobin dropped from 9 to 5 and he had to be hospitalized to get the amount of blood he needed in a timely manner. I would move cautiously.

Anyway, I know I'm not saying much if anything you haven't already thought of. Just wanted to share my thoughts that starting that treatment doesn't sound like the best idea right this minute. I wish you and your family good luck and hope for improvement in your mom's condition.

Margie

kedlee
Tue Sep 11, 2007, 10:51 PM
The only reason we were given was she would not have to meet a copay because she is already in the hospital. Also she had a PICC line installed so she can have it administered by IV as her veins are shot from 3 yrs worth of blood test and all relating to MDS. I did some research and found a case where a lady had the same thing happen to her after bone marrow biopsy and 6 months later she still had issues with the leg. Here is a link to this case so you can get a better idea of what she is going through:

http://www.sciencedirect.com/science?_ob=ArticleURL&_udi=B7CRN-4MG6PC5-1&_user=10&_coverDate=07%2F31%2F2007&_rdoc=1&_fmt=&_orig=search&_sort=d&view=c&_acct=C000050221&_version=1&_urlVersion=0&_userid=10&md5=a0f3da082890377211cabd0f536237c1


Her BMB results showed no major change that would require immediate treatment. As far as the copay my Mom had the forsight to take out a cancer policy on top of her medical insurance and medicare so that should not factor into their decision. I am at a loss as to why so soon after a surgery that was due to their screw up on the BMB they think she should have to be weakened even further. If anyone can give me some advice on what I need to be asking as even after reading everything I get my hands on I do not understand half of what I am told by the doctors and she is confused and depressed and looks to me for guidance. Thanks for any info in advance and to the person who replied to my original post Thanks so much.

Tavia
Wed Sep 12, 2007, 06:27 PM
I am pretty new at this, but you may want to consider tape recording the doctors' meetings. Then you can play them over several times, giving yourself extra chances to understand (and look up) jargon. Also you are then clear on what was said, instead of getting home and saying to yourself, "Did Doc say this about quetsion A or quetsion B?"

margieinindy
Wed Sep 12, 2007, 07:35 PM
Vidaza is usually administered under the skin, not through the veins or a PIC line. The FDA just approved giving it through veins.

Clearly, I wasn't there and I'm no expert (though it feels like I'm getting to be one more and more) but I still don't hear anything that makes me think starting Vidaza now is a good idea or necessary. You can pretty much guarantee her counts will drop (Mark's hemoglobin dropped A LOT) and therefore she will feel terrible.

Just ask the docs what will happen if you stand pat for now. What happens if you make no changes--keep doing what you were doing before she had to have surgery (and deal with the injury and surgery recovery obviously). If she was doing pretty okay before the injury caused by the bone marrow test, then can she get back to that place now? If not, why not? What will starting Vidaza now give you that starting it 2, 4 or 6 months from now will not. If they say the deductible again, then you say that isn't and issue and ask if THAT changes anything. I communicate with Mark's hemotologist by email a lot and that way I can put all of my questions down and word them carefully to make sure my point is coming across. Maybe that would help? (That requires the doc to read and respond, however, and they don't all take time to do that).

Again, I am sorry for your mom's (and your family's) troubles. I wish you luck.

Margie