thought i'd give an update on my experience with this study. i got my first infusion on oct 17th and had no ill effects other than my blood pressure getting super high. but i think that was from the last minute fumbles in planning thru science 37. my infusion medicine was supposed to arrive the afternoon prior to my infusion date. never showed up until about 2 hrs prior to my infusion viist. needless to say there were alot of frantic emails, texts and calls that went on to make sure my visit didn't get cancelled
i was in the very last day that i could get infused else i would have to go thru the 5 hr qualification process all over again!!!! no wonder my bp was super high. i decided if that happened i would decline to go ahead with the trial. i figured if they couldn't get the logistics right about delivering supplies what else could they screw up right?
but in the end my visit wasn't cancelled (i know of others that did have that happen, there is a fb group for this science 37 study that someone started btw which has been very helpful!
they did not send enough bandaids, covid test kit to ensure i was covid negative did not have enough reagent in it so we had to use MY home test kit.....lots of stuff like that.
but my nurse was great! i've had her for follow up draws. super fast super competent. very skilled. like her alot. best part of the study. but in general its not well managed. we are supposed to get $100 compensation gift cards for each visit and i had to really nag my clinical coordinator to get my last card. not that i'm doing it for the money BUT it does come in handy and i shouldn't have to do this kind of thing! i'm not so sure i would ever do anther science 37 study again. i like the concept but the reality is much differnt. i find it to be high stress and alot to juggle and it takes more time then just going to a brick and mortar place where everything is organized and ready to go and you get more $$ too apparently!
But in many cases the brick and mortar places have been hundreds of miles from me and unless i needed to be in clincal trial for treatment i cannot travel for a study...an extra study aside from treatment related. that's my update. i'll get my next infusion next month? and i'll give another update. hopefully all will go smoothly. nervous to be traveling to mda and i've not yet gotten my covid booster. you have to wait 14 days after the infusion to get the flu shot (done!) and 28 days to get the covid booster. i will get it when i return from mda....have it scheduled for next sunday! ugh i get so sick from those boosters!
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i was thinking about trying the novavax. i had read it was less effective in those over 65 so i decided to stick with the pfizer. maybe once more data comes out the novavax will prove to be as or more effective. its a much newer vaccine with less data behind it. my hb is in a clinical trial now for dose titration and efficacy for the novavax
I am still trying to decide whether to get the Novavax shot. Six months ago I had the Moderna booster shot, I suffered from side effects, chills hives, muscle aches. I was told that experiencing side effects indicated that the Moderna shot was giving me added protection.
Why did you choose to get the Novavax shot? My GP had recommended that I get the Novavax vaccine, while the my cancer agency pharmacy recommended that I get the Moderna vaccine.
I would appreciate if you would take the time to answer.
There are studies that show mixing mRNA + Novavax is 9x more effective than mRNA alone.
Pfizer and Moderna seem to wane in about 2-3 months against infection. The most recent Novavax study out of Italy shows it holds for 4 months.
The original Novavax trial data which showed it was 90% effective against the original Alpha strain. Both Pfizer and Moderna had similar efficacy at the beginning.
Quote from Dr. Katelyn Jetelina Your local Epidemiologist
“Novavax vs. mRNA COVID-19 vaccine?
Both are great shots. And the data pool to draw on is so narrow I’m uncomfortable saying one is immunologically better than the other. But studies have shown many similarities and some subtle differences:
Similarities
* Both provide a solid first line of defense (i.e., neutralizing antibodies).
* Both strengthen a solid second line of defense (i.e., T-cells).
Differences
1. Negative: Novavax produced significantly lower levels of a specific antibody called IgG.
2. Positive: Novavax had a more durable response over time (waned less quickly).
4. Positive: Novavax has fewer side effects, like pain and muscle aches. For this reason alone, I will be getting Novavax this fall. “
Unfortunately when I called the pharmacy that carries the Novavax vaccine, I was told they are awaiting the newest form. Will wait until December and see if it is available by then. I am in BC Canada, it seems that Canada is behind when it comes to the availability of Novavax.
although my leukemia doctors seem to imply that only the Pfizer had updated their bivalent vaccine to be affective against the most recent strains of Covid. Who knows what he knows lol.
you misunderstood my comment I said that I was considering getting yet but decided against it because I had to read that it was not as effective as either a Pfizer or Moderno and people 65 years and older
I just talk to my Leukemia doctor and asked him which vaccine he recommended and he said that they are recommending Pfizer. He said unless I just wanted to skip it all together because I won’t have that good of a response because of being immunocompromise, so why get sick for nothing right? I mean that was the implication. I said well, I would have some kind of T cell response, which he agreed with on that He heavily implied that I asked him what he was doing and he said well they require us to get it, but he made it sound like if it was up to him, he would be skipping it lol. I asked him for his professional opinion, but of course he backed out of it by saying he does research on Leukemia not the Covid vaccine. He would not Take a position other than they are supposed to recommend the Pfizer officially. How do you like that for waffling?
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