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Hi Patti,

I would love to know what naturapathic medicine your Mom is taking to help heal her bone marrow. Please share if you have a chance.

Thanks so much.
Karen

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Hi,

I just wanted to say how sorry I am for the losses that we have heard about through this forum. I hope everyone is doing alright. You are in my thoughts.

Kindest Regards,
Karen

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Also, if anyone is interested in the status of Exjade (oral medication to reduce iron), this medication will be reviewed by the FDA’s Blood Committee on September 29, 2005 and a decision should be made by Nov. 7, 2005.

Let us keep our fingers crossed.

Kindest Regards,
Karen

[KP2112]

Hi Everybody,

I think this is great news as well!

09/14/05 – FDA Oncologic Drugs Advisory Committee Recommends REVLIMID(R) for Full Approval

Wednesday, September 14, 2005 – Celgene Corporation announced that the Oncologic Drugs Advisory Committee (ODAC) of the U.S. Food and Drug Administration (FDA) recommended full approval of REVLIMID(R) (lenalidomide) for the treatment of transfusion-dependent patients with myelodysplastic syndromes (MDS) with 5q minus with or without additional chromosomal abnormalities. The committee based its recommendation on clinical data from an open label Phase II trial, evaluating REVLIMID(R) in MDS patients with deletion 5q chromosomal abnormality. The FDA expects to complete their review and decision by October 7, 2005. Read Celgene’s press release at http://www.celgene.com and FDA’s Briefing Document for the September 14, 2005 Oncologic Drugs Advisory Committee Meeting.

Learn about FDA’s Drug Approval Process at http://www.fda.gov. Click here to view information about Revlimid® from our Drug Information Page.

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Hi Viola,

It is interesting that you bring up this subject. At my Dad’s last Dr’s appointment he said he did not know why after my Dad’s tx that the blood, which is suppose to last around 90-120 was not. I asked him how we could figure this out and he said he did not know. Well, I started looking around and I came across fibrosis in which the bone marrow gets fiberous and is unable to produced blood cells. That only told me perhaps why counts could drop but not why newly introduced blood fails to last as long as it should. I have also looked into autoimmune problems to try to make a link. He is taking prednisone, while checking his blood sugar levels 3 times daily.

In terms of your situation, I think it depends on the type of fibrosis. I don’t think there is necessariliy a cure but there are medications that can help with it. I will look through some of my resources and see what I can find.

If anyone has any thoughts on this, please respond.

Kind Regards,
Karen

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Hi Everyone,

I noticed the inquiries regarding Revlimid. As per the letter that was sent out, we did receive a response from the FDA saying that the drug was under review by and FDA panel and a decision as to whether it will be approved with be announced in early October. I hope our voices will contribute to Revlimid’s approval.

Kind Regards,
Karen P.

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Hi Russ,

My advice is to get well and stable. Being off work for an extended period of time I think will be depressing and that could add negatively to your condition. Perhaps you can adjust your schedule to be flexible. I think it is important for MDS patients to be active in some way (to the extent they can). Do what makes you happy if you feel well enough to do so. The Dr. does not know how you feel. He/she is only reading numbers on a page.

Kind Regards,
Karen P.

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Hi Everyone,

The Exjade letter was sent out yesturday. I think I had about 23 people on the list that I sent it to. I included organizations such as the Iron Disorders and Hemophilia Associations as well. I know that they are also concerned with iron overload.

Hope everyone is doing well. Although sometimes it seems things are at there worse they can always be worse. So try to stay positive and just enjoy every minute all the time.

Kindest thoughts to all,
Karen P.

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Greg and Jennifer,

I am very sorry to hear about you loss. I hope you will have the strength to get along during this difficult time. One day MDS will be gone and no other families will have to go through this.

Warm regards,
Karen

[KP2112]

I am sorry to hear of this. Things will improve.

Take care,
Karen

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Hi Everyone,

I just wanted to let you know that the letters were sent out yesturday (with about 75 names). The letters were sent to the FDA, Dr. Alan List, congresspeople, three senators, and some health people in Canada. I want to thank everyone from the bottom of my heart for taking the time to reading this post and for supporting this cause. I truly thank you!

I will keep you all updated on this FDA process.

With the kindest regards,
Karen

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Hi everyone,

We are up to 54 names so far. Thank you guys so much for signing on. I will send the letter Mon. June 13 so any other names would be so much appreciated!

Also thanks for the ideas and contacts to forward this letter too.

I really hope this is taken with some regard by the FDA.

Thanks so much,
Karen

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Thanks again everyone!

We are up to 36 names. I will be sending this on Monday so if you would like to keep adding that would be much appreciated. I am going to see what else I can do as far as the Foundation and names.

Thanks,
Karen

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Hi Everyone,

Thanks for your support for this FDA approval. I have 26 names currently. I would at least like to get it to 50 before I send it. If you know anyone that would like to be included on the list, please let me know. Maybe we could do better than 50. Also, would there be any Senators/Govenors that this may also want to be cc’d too? Some are very persistent concerning medical issues.

Again, thanks so much!
Karen

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Kristy,

My Dad decided that he wanted to see how the valproic acid would work before trying it with something else.

You are right in that VA is used as a mood stabilizer, for epilepsy and for migraines. In a study they did however, they found that it help with blood formation. It is not very well researched at this point but hopefully they will only discover more useful data.

Thanks for everyone’s kind words.

Jody I will look into the Gleevec thing as well. Glad to hear about your Mom.

Hope all goes well with your Mom Kristy, keep us updated.

Take care,
Karen

Karen

[Author]

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