MONICA SMITH AT MDACC 9/14/11

MONICA SMITH AT MDACC 9/14/11
MONICA SMITH AT MDACC 9/14/11

Wednesday, September 29, 2010

9/29/2010 INCYTE CORPORATION CONTACTS US

AMAZING! While we were visiting Lamar (Joe's Mom surviving hubby) in a Bremen Hospital. Pamela, VP from INCYTE called me and apologized for not getting back with us yesterday. She bridged a conference call with INCYTE Head Medical Physician. Dr Rick Levy, who was at his home. He spoke with us for at least a half hour and we got the information we needed to wean Joe off the INCYTE.

Dr Levy stated that he could not give us medical advice but would give us some information and answer our questions. He stated that the INCYTE would be out of  Joe's  body before the Chemo even if he stops it the day before. The reason for that he stated was because INCYTE only has a half life. For example if one were to take 100 mg of INCYTE that in four hours there would only be 50 mg left, in four hours more only 25, four more hours 12.5 mg etc... He stated that Dr V is the expert and should had been able to tell us that and how to get off the INCYTE. I told De Levy that I thought exactly the same thing and it was why I was concerned. He did say that there were a few who came off of INCYTE quickly who had dire results, some who came off of it slowly had some of the previous symptoms return and some had no issues at all. Dr Levy expects that Joe will feel like he did before he started the INCYTE  which means severe fatigue, sweats etc.  He agreed with me that he would also have Joe completely off the INCYTE a few days before the FCR chemotherapy. He stated that if Joe started to feel really bad then he could go and take the INCYTE even up to the day before the chemo. He also stated that it would be highly unlikely that Joe would be permitted back on the INCYTE trial after he completes the FCR chemo since one of the conditions to be on the INCYTE trial is that the patient can not have any other cancers and now he has it. I told Dr Levy and Pamela that Joe loved the Incyte since it improved has quality of life with energy and the reduction of sweats and fever. Dr Levy stated they anticipated that INCYTE would be approved and on the market in one year or shortly thereafter. In Joe's case they would work with Dr V making Joe a special case when he is through with the FCR chemo for the CLL.

Dr Levy and Pamela stated that no one contacted them via e-mail nor phone but perhaps one of the other people on the staff and he would pin it down who was contacted to resolve the issue of  why they did not respond quickly.  He believes that Dr V probably wanted a bit more information about Incyte with FCR and about Joe being able to go back on the INCYTE in the future.


Joe started the INCYTE reduction tonight from 15 mg to 10 mg  twice a day for 7 days then he will reduce it to 5 mg twice a day for 3 days then stop totally and have 2 to 3 full days completely off of it before the chemo starts on 10/12.

It is now a watch and see how Joe's body reacts to the slow withdrawal of the INCYTE. Please pray for a smooth withdrawal without any complications. Your powerful prayers have worked so far so please keep them up.

 I am beat so good night our ARMY.

Ciao,

Bonnie


 

6 comments:

  1. You got it gal. I got prayer warriors praying around the country.

    Jan

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  2. The prayers never stopped!
    Lynn

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  3. Thanks for the posting. We'll keep the prayers going!
    Susan

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  4. Just prayed for a smooth transition for Joe.

    In Him,
    Denise, PMF, 2009

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  5. You are both in my thoughts and prayers.
    Fran in California

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  6. Hi Bonnie - I subscribe to mpd emails as well. I have ET. I just wanted to say that I admire the way you are living your life. Blogging can be helpful. Joe is Blessed to have you running interference and quarter back. Will keep you and Joe in my prayers.
    God Bless,

    Patricia - Melbourne Beach, FL

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