valcyte stanford clinical trial update

Discussion in 'Fibromyalgia Main Forum' started by clo1, Nov 26, 2008.

  1. clo1

    clo1 New Member

    hi again,

    here is what i learned about the trial from my appt. with dr. montoya yesterday:

    1.) some of the blood work is still being analyzed; the "gene expression" aspect of the blood is being studied at a lab in london and the results are still pending and will probably be ready sometime in january.
    2.) the function of "cytokines" in CFS is still being studied at one of the labs @ stanford, and the results should also be ready sometime in january.
    3.) the pulmonary function testing shows that the valcyte group had better oxygenation than the placebo group
    4.) the cognitive tests clearly show that the valcyte group improved greatly compared to the placebo group.

    dr. montoya didn't say when the results would be published, but it would seem from the above mentioned data that it probably won't happen until spring of 2009...best regards, clo
  2. winsomme

    winsomme New Member

    thanks for the update, clo.

    i am glad to hear that they are doing gene expression studies to go along with this. sounds like maybe Dr Kerr's team in the UK...

    i really think that these types of gene expression studies will help piece this puzzle together because they can give you an information-filled snapshot of what exactly is going on in the body - what is up regulated...what is down regulated..for both the responders and non-responders.

    it could tell us as much about the non-responders as the responders and lead to a treatment that might work better for the people that did not get much better on the Valcyte.
    [This Message was Edited on 11/26/2008]
  3. stschn

    stschn New Member

    Important info thank you.
  4. sascha

    sascha Member



    i've been astoundingly rickety, weak, wasted during and since valcyte. of course i had a certain amount of that before the v journey. now i'm on a third sort of anti-viral, and i'm working oh so hard on nutrition and supplemental program with online doctor.

    i've had all sorts of testing, and am working to get innards and various systems back on track, that through much testing have demonstrated that they are definitely NOT on track.

    i'm so committed to improving health- this has ever and always been my quest.

    valcyte and anti-virals are part of the plan. now next initiative- i hope to see improvements over time- SIGNIFICANT improvements. best to all- Sascha
  5. ladybugmandy

    ladybugmandy Member

    clo..thank you for this information.

    spring of 2009....long time to wait :(..but looks like we will have some real insights. i didn't know the study involved gene expression.

    love
    sue
  6. ladybugmandy

    ladybugmandy Member

    clo....if you don't mind my asking, what did dr. montoya say about your condition? i cannot remember if you are on valtrex or not.....sorry - foggy.

    love
    sue
  7. clo1

    clo1 New Member

    hi sue,
    to be frank, i left stanford on tuesday feeling quite shaken; dr. montoya spent quite awhile with us (me and my partner paul), and it seems he now thinks that what i am dealing with is not necessarily "just" CFS anymore (as if much in the world could be worse than that!); obviously i have had major issues with my pancreas; he asked if he could speak to my doctor at kaiser next week, and of course i agreed...he appeared quite concerned and we discussed the possible worst case scenario (an as yet undiagnosed malignancy); he wants this to be ruled-out before i continue with antivirals or any other new treatments...what really got his attention is the fact that i am "failing to thrive"; as in no appetite, considerable weight loss over the last year, multiple incidents of acute pancreatitis, and that i look like death warmed over...

    in other news from the visit, he cited dr. lerner as an example of someone who keeps patients on valcyte and other AVs for "9-12 months to years", and said that he is starting to see this as a possible way to treat some of his patients...so clearly he and dr. lerner are in touch and learn from one another...

    so that's the update; i am not freaked-out or anything; just SO frustrated with this ongoing uncertainty...love, clo
    [This Message was Edited on 11/27/2008]
  8. ladybugmandy

    ladybugmandy Member

    clo...you are strong. but you kind of have to be, right? i never thought i was until there was no other choice.

    i do hope you do not have to deal with malignancy on top of everything else. it certainly crosses my mind quite a bit too, when i feel that i am deteriorating.

    whatever it is, finding the answers has to be a good thing. also, it seems as if dr. montoya genuinely cares and is trying - i am so glad about that.

    thank you very much for telling me about montoya's opinion of lerner's methods....it really helped put my mind more at ease.

    if there is something i can do to help you, please let me know.

    love
    sue
    xoxoxo

  9. stschn

    stschn New Member

    At this point I don't know what to say. What could possible make it any better for you-sometimes words just seem so empty. I am so thankful that you are seeing Dr. Montoya even after the trial. I really believe that he is not only a wonderful human being but also a great doctor. My heart and prayers go out to you. And please thank Paul for us for being there for you. Love Joyce
  10. clo1

    clo1 New Member

    hi sue,
    thanks for your sweet note; i actually think it's unlikely that there is an undiagnosed malignancy (i hope); but one thing dr. montoya said is that in medicine, acute pancreatitis is considered to be as damaging to the body as a severe heart attack in terms of the havoc that it wreaks; so now i've had 3 episodes and there may be more coming...maybe this deterioration is related to that; i just don't know...oh, i also recall dr. montoya saying something like: you know, these viruses (meaning ebv and hhv6) can cause acute pancreatitis...now that came as kind of a shock! so i left the appt. feeling rather confused and dazed...

    i'm glad it's helpful to you to learn about dr. montoya and his respect for and collegial relationship with dr. lerner...sounds like you are definitely on the right track...love, clo



    [This Message was Edited on 11/28/2008]
  11. clo1

    clo1 New Member

    hi joyce,
    thanks for your note, and i agree with you about dr. montoya; he has such a good bedside manner, and he really focuses and listens to patients in the old fashioned way! as i wrote to sue, i am not ultra-concerned about the worst case scenario (as in an undiagnosed malignancy); but dr. montoya did seem to be looking at "my case" in a different way, and appeared very concerned...he relies a lot on what he sees and his intuition, whereas so many physicians these days rely on the results of high-tech tests...those are important too of course!

    anyway, i hope you are doing as well as can be expected, and i expect we'll talk soon; the phone has been hard for me lately...love, clo
  12. Timaca

    Timaca New Member

    Clo~

    You amaze me. You are so very faithful to report in to us how your appointments go and what the latest news is on the Stanford Trial. What an angel....always thinking of others. I am praying that you see your reward here (in the way of improved health)....and SOON!

    I'm so glad that you are in the hands of Dr. Montoya, and that he is looking out for you so well. What a great man he is.

    Hugs and prayers to you...Timaca
  13. clo1

    clo1 New Member

    hi timaca, you're so kind...and i am SO glad to "hear" from you; i was wondering where you were and how you were doing; i was concerned that maybe you had disappeared from the board since the change of format...

    memories of my appt. this week with dr. montoya keep surfacing, and as they do i try to weave them in to some of my posts here...but i think i've covered everything he said about the trial...

    how are you doing? i know that you had improved somewhat on the valcyte and were also dealing with lyme disease and antibiotics...maybe you have posted elsewhere on the site, but if you have a chance, can you give me an update? thanks...YOU are always so thoughtful and concerned about the well-being of others!! love, clo


    [This Message was Edited on 11/28/2008]
  14. stschn

    stschn New Member

    I'm glad that you are not to concerned but I'm sure the sooner you can get back into see your PCP and get the needed testing done the better for peace of mind. I know and fully understand that the phone is often difficult for you. When you did your first post after the Stanford trip and didn't say anything about your own situation it was a red flag. Please know that you are in our thoughts and prayers. I wanted to send flowers but then remembered that they just one more thing to take care of when you don't feel well. So we are sending a hugh bunch of loveing and careing thoughts your way. love, joyce
  15. Timaca

    Timaca New Member

    Thanks for asking about me. You are always so thoughtful. Yes, the new board is a bit harder to navigate in my opinion, so I don't stop by here as often as I used to. I'm glad I stopped by though and saw your post!

    I did see improvements from valcyte, and my IgG antibodies dropped correspondingly. However, while off valcyte and prior to going on acyclovir, I developed the "flu" and significant headaches returned. Interestingly enough, at that same time my IgG antibody titers to HHV-6 went from 1:80 back to 1:640. The doctor is hoping that the acyclovir will beat the HHV-6 back down, as he would prefer to not put me back on valcyte. I have maintained the other improvements that valcyte brought to me which is less fatigue and less brainfog. (I still have fatigue and brainfog, just less).

    I am battling Cpn (Chlamydia pneumonia) and am on doxy for that. My IgG antibody titers are still as high as the lab measures after 5 months. I'd like to add in another antibiotic to treat it, but did not have time at my last appt to discuss that with the doctor. (Plus it is very hard for me to make suggestions to this very knowledgeable man!) I may add in N-acetyl cysteine prior to my next appt, which is in 3 months. However, that might meet with disfavor from the doctor that is treating me......and I don't want to displease him. So, I may do nothing until I see him again. That's hard for me too, as I feel that time is ticking by without the Cpn being addressed more aggressively. :-( So, I feel a bit like being caught between a rock and a hard place.

    It does seem like enterovirus could also be a problem in me. Tissue has tested negative for it when I was well, and positive for it twice while ill.

    So, I'm better than before valcyte, but a long way from well. I am trusting that God will bring good out of this awful situation. I do pray for you. When is your next appt with Dr. M?

    Best, Timaca
  16. clo1

    clo1 New Member

    hi timaca,
    thanks for the update which of course brings mixed results; i had forgotten that you were battling the Cpn...

    i certainly appreciate your prayers, and you definitely have mine! at least we are still coping and for that i am grateful; most people freak-out when they have a 2 week flu! they could never in their wildest dreams (or should i say nightmares??) imagine what the likes of us have had to endure for years on end...

    i think i am scheduled to see dr. montoya again in february, but at this point i'm not sure if there's anything more he can do for me...

    i sure hope that the acyclovir will keep the hhv6 at bay for you...all the best, clo
  17. clo1

    clo1 New Member

    hi joyce,

    thanks for all of the good thoughts! and you're probably right about the flowers...all of that trimming of the stems and then eventually the petals falling off...it's a wonderful idea, but the reality is challenging! how pitiful!!

    how are you doing now, and did you recover from that last episode of post-exertional malaise? love to you and phil, charlotte
  18. stschn

    stschn New Member

    Maybe card-board Flowers? Yes I am doing better but not where I was before I over did. However I do feel that I am recovering more quickly that I have in past years. Only 4 days bed ridden and not 4 weeks. The next week I even made it to our son Gregs for Thanksgiving (in the wheel chair) and stayed for 3 hours came home went to bed after a hot bath and slept from 7pm to 10am BUT I was able to get out of bed the next day . I miss talking to you but this is o.k. Please keep us posted on your follow up testing. Love Joyce
  19. jasminetee

    jasminetee Member

    Hi Clo,

    It's good to hear from you and thanks for updating us on Montoya's studies. It's great that he's continuing to look into this and that they're now looking into Cytokines.

    I'm sorry to hear that you're still battling so many health issues. I hope your pancreas is ok.
    Hugs and prayers,
    tee