Tuesday, 19 April 2016

Valcyte/ Valganciclovir

Hi,

Has anyone had success using Valcyte? I read a study suggesting that the CMV virus might have a role to play in GBM. Also the Swedish VIGaS study showed some benefit to adding Valcyte to standard treatment. Can someone please share their opinion/ experience with me?
Many thanks
Noha
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15 comments:

  1. Guy19 April 2016 at 19:15

    We had a friend suggest to test for CMV. It was 80,000ppm. When we spoke to our oncologist, he recommended us to take Valcyte and that many of his patients were taking it. What's your ppm?

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  2. Unknown19 April 2016 at 19:42

    Thanks Guy. My husband d did 2 tests. I will know tomorrow the details .. Will ask his doctor's office. Can I ask you how much is your NO recommending? Has any of his patients had success with it? Thanks so much!

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  3. Lisajw20 April 2016 at 00:55

    My brother was diagnosed with GBM 20 mths ago. He has been taking Valcyte for most of this time. He has a blood test every month before 5/28 TMZ and they also check his creatin levels- I think this can be affected with Valcyte. So far so good!

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    Replies
    1. Aditya20 April 2016 at 02:51

      Hi
      I am cardiologist from india whose doctor friend has been recently diagnosed with GBM (March 2016). He has had a surgical resection and is now on Radiotherapy + daily Temodar since 11 April 2016.

      What is the best time to start Valcyte (is it after the radiotherapy) and how much dose, for how long. Also, is it a pre-requisite to test the blood levels for CMV prior to starting.

      Thanks
      Dr. Kapoor
      akapoor65@gmail.com

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    2. Unknown20 April 2016 at 04:28

      Thanks LisaJw. How much Valcyte is he taking daily?

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    3. Lisajw21 April 2016 at 02:58

      Hi Noha, my brother does the dosage that Mike wrote below.

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  4. Mike20 April 2016 at 12:06

    I was diagnosed GBM4 in 11/2014- had resection and 30 sessions of radiotherapy along with daily Temodar. To date, my MRIs have been stable. Not sure when the ideal time is to start Valcyte but this is what I did:



    I started Valcyte after completion of radiotherapy and just before the 5/23 adjuvant Temodar cycles started. I did a three week loading dose of 900mg twice daily for three weeks, then reduced to a maintenance dose of 450mg twice daily- which is the dose I currently take. I recall having a little GI upset during the initial loading dose period, which resolved when the maintenance dose was started. It is also best to take Valcycte with a fatty meal as it increases its bioavailability.



    At that time I inquired about CMV testing via blood and was told it was not necessary. I was told that even if the blood work did not show CMV that it was highly likely that the tumor had CMV. Testing the actual tumor for CMV did not seem to be an option at the time. Since then I have also heard a longer loading dose time period could be beneficial (i.e., more than three weeks at 900mg twice daily)- but I do not know what that ideal length of time should be for loading.



    Hopefully I will be on Valcyte for a while longer :)



    Mike B.

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    Replies
    1. Unknown23 April 2016 at 07:11

      Thanks so much Mike. Did you experience any blood count drop with these doses especially the loading doses? Wishing you continued success with the treatment and long healthy years

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    2. Mike26 April 2016 at 21:35

      Hi Noha,

      For both the loading phase and maintenance phase, I did not/have not experienced any critical lab decreases requiring any drug dose reductions or other measures such as transfusions or colony stimulating factors. Since loading Valcyte in 2/2015, my monthly cell blood count results have been "low-normal" or "just below the low end of normal" for lab values. I have had a decrease in the absolute lymphocyte count over the past year- maintaining at ~0.7 x10E3/uL (reference range 1.1-3.5 x10E3/uL).

      Mike B.

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    3. Heather Jay5 March 2019 at 14:06

      Hi Mike, may I ask how you are doing now?

      We are recently diagnosed and just got our Valcyte approved.

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  5. Annie20 April 2016 at 15:11

    Hi -

    Dad takes 450 mg twice daily. Just started it about 3-4 weeks ago. So far so good. I have been pinging swedish asking when they are going to post the link to the lecture Mike B and I attended. I'll ping her again. I think everyone here would benefit from seeing what Dr. Soderberg had to say about the link between CMV and GBM.

    Annie

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  6. Annie20 April 2016 at 15:14

    Here's an interview with her that gets into it a little bit: https://www.youtube.com/watch?v=g_n5XwjWzjs

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  7. SVG21 April 2016 at 02:12

    I think that CMV variant (!) virusses can trigger the induction of GBM but is not necessary drive the tumor growth. This explains at least some effects of Valganciclovir. This can also be important when considering immunotherapy against GBM with whole tumor material that includes then also these viral component.

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  8. Unknown21 April 2016 at 07:03

    Thanks a a lot for all the inputs...As per the comments, we shall consider starting after the RT and once the maintenance Temodar is initiated.
    Aditya

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