Lynnie

On 6/17/2007 Jodi1 wrote:

Hi Lynnie,

I see that you are also interested in this trial. Just curious, how did you hear about it? Do you know anything about it at all? I have been researching it for a few months and have spoken with someone at one of the trial locations (Johns Hopkins in MD). She faxed me a copy of the consent form they use at that hospital which gave me a lot of info about what is involved in the testing. Unfortunately I don't know too much about how it is working. I found out about this virus from someone who actually works for Neotropix, the company who created this virus. He has been able to answer some of my questions, but of course I would love to hear from someone who has experienced the treatment first-hand.

I see that you also found the other message on this site - the one from Betsey, whose husband has received this virus. I have been anxiously awaiting a reply from her. I hope all is well with her husband.

If you have any questions that I might be able to answer I would be happy to reply.

Take care,

Jodi

HI Jodi,

I heard about this trial from  the internet.  My husband and I met with a person from John Hopkins regarding the trial last week.  I asked several times about the status of the persons currently receiving the virus.  All i was told was "it too soon to tell". I plan to ask again.  I too would like to hear from someone who is already involved.  They started people into this trail in May 2006.  

lynne 

On 5/7/2007 Jodi1 wrote:

Hi there,

I am looking for anyone who has been treated with or knows anything about the Seneca Valley Virus. My husband has stage 4 neuroendocrine cancer (unknown primary) and appears to be a candidate for the Phase 1 Clinical trial using this virus to treat patients with advanced solid tumors with neuroendocrine features. I know there have only been about 7 patients enrolled in this trial, so my chances of getting a reply are slim, but I am desperate to learn more about it. Please respond ASAP if you have any experience at all with this treatment.

Thanks so much!

Jodi 

 

 

On 5/15/2007 Betsey wrote:

Jodi,

My husband was transfused with the virus 1/08/07. Intially there seemed to be little to no side effetcs however his loss of appetite and fatigue really set in after 1 1/2 - 2 weeks, to the point even seeing a food related TV commercial made him gag; really quite bizzare. He made it through with Boost Plus and home made "super shakes". I kept a daily log/food intake.

Part ot this trial (he was only 4th in the country) was frequent lab work to track how the virus was exiting the body. This was quite demanding, requiring collection of stool, urine, sputum and nose swabs, plus going into the office for blood tests. We had to be very careful with infection control here at home and were in an isolation mode for first week due to being "contagious".

 

CT scans show the tumors in lungs have stopped growing