new to mds

[susand]

Hi guys.

Thanks to everyone for all the info, good & bad I have found on this forum. Background – I am 63, diagnosed 5/06 & classified Intermediate 2 plus have 7 abnormal chrom.

Dr wanted me to immediately have a BMT but was so overwhelemed by what has happened plus the financial burden to even consider right now. Started with Aranesp which did not work. Switched to Procrit with one transfusion so far. Am doing much better as of today. Have had some lower back pain and leg pain controlled with tylenol & presp pain med.

Will start Revlimid next week. Will let you know how it goes. Have already written down remedies I found from several of you for itching, etc. Thanks.

I have a couple of questions:
Has anyone lost weight because of disease and if so have you gained it back

Someone mentioned Philadelphia chrom – what is that and where can you find out what the chrom #s mean.

How do you put the tag line at the bottom.

Am not on the computer everyday. Again thxs to all.

[uno grasshopper]

Hello Susan:

According to Madeline Marget, author of Life’s Blood, the genetic change that exists in chronic myelogenous leukemia (CML) is a piece of chromosome 22 changes with a fragment of chromosome 9. (This is called translocation). The result is called the Philadelphia Chromosome (It was originally discovered in Philadelphia, as I understand it). It affects the DNA. The aberration occurs only in the bone marrow cells, and only in some of those. It doesn’t happen anywhere else in the body–not for example, in liver cells or skin cells or ovum cells, or sperm cells.

If you Google “Philadelphia Chromosome,” you should get lots of hits. Here’s one link as an example: http://learn.genetics.utah.edu/units/disorders/karyotype/reciprocal.cfm

As far as adding a tag line at the bottom, I think you have to go to the “edit profile” section, and it’ll have a space for you to add your tag line.

Take care!

Marla

[maueenh]

Susan,

My father was also diagnosed in 5/06 so I too am learning. If you click on your profile you may enter a tag in the box indicated. My dad initially lost about 10lbs but has gained a few in the last couple of weeks. He stills has a decent appetite so not concerned at this point. I’m not well versed on the chromosonal issues so I will leave that for someone that is. Keep us posted on your Revlimid treatment.

Maureen

[eve]

hi susan

in reference to weight loss

my dad’s doctor said – the body uses a lot of energy trying to fight this disease -hence the weight loss

my dad has lost a lot of weight – he is extremely thin – he is taking megase to increase his appetite and it also helps slow the metabolism so that calories aren’t burnt as quickly – but it is almost impossible for him to gain weight –

good luck
eve

[KWJ]

My dad lost 78 lbs since DX in D Feb 06. Has gained a little bit back. Starts new chemo dacogen Monday. Found a match for mini so we are hoping to get him at a point where he can be a candidate for that.

[SusanJ]

Hello friends,

My dad has lost a little weight, but he eats like a horse! He has a very healthy appetite and eats a lot but never gains any weight. But he is always so tired and gets winded very easily.

[lindajo]

i was told to gain weight initially so I ate exccessive amounts until I ws 20 lbs ovverweight. That lasted through 15 years and many infections. I lost 20lbs with a staff infection this winter and now with the help of Eggo Buttermilk waffles I have gained back twelve. What a way to go. Lindajo

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