Buongiorno a te! :-)

Well, yesterday evening (see yesterday’s post, the second one) was very emotional for me and, when he got home from work, for Stefano, too. As soon as I’d finished telling him about Dr. Bradner’s research, we just hugged. We’re not alone in our joy, either. From the reactions I’ve read on Facebook, private messages I received and the comments left on yesterday’s post, the Jay Bradner video has bowled over other members of the myeloma family…many of us!

My feet are back on the ground now. Well, truth be told, even last night, as happy as I was, I realized that we won’t be slathering our bodies with these molecules any time soon…But, as my friend LPC wrote to me, Dr. Bradner’s research really gives us HOPE. Concrete hope. And we know how important HOPE is in a cancer patient’s life…Just read or re-read Prof. Stephen Jay Gould’s essay (the link is in yesterday’s post, the first post I wrote…). Prof. Gould points out (from memory) this well-known fact, which cannot be explained: patients who never lose hope live longer and do better than those who do (lose hope, that is). That’s why I recommend a belly laugh every day. And that’s why I’ve been seeing my card-playing, game buddies a lot lately. I’m getting picked up in about a half hour, in fact, so I have to hurry. Anyway, we need to have fun and de-stress as much as possible…

I recently heard this pretty song sung by Luciano Pavarotti: http://goo.gl/zr30C I tried to find a proper English translation…but failed. So I translated, more or less, a few of parts I liked the best, including the opening, which sounds better, I must say, in Italian…Still, I found this song/tune so joyful, so hopeful, that I thought it would be appropriate for my state of mind right now:

“Good morning to this day that’s waking up today with you, Good morning to the milk and the coffee, Good morning to those who aren’t here…”

“It’s a new day, and who knows if the world will change…and will dance!” 

“But it is dancing (through?) life that you will learn that every great purpose is a step you take. It’s a new day for you, too…Celebrate it with me!” 🙂

One last word or two: I have the full study in my possession, and I began going through it as soon as I got home from work today. But I’m only about halfway done. Not enough for a post. And now I have to go get ready for a fun-filled evening. Oops, I’m late! Stay tuned….more tomorrow…Ciao! 🙂

5 Comments

  1. My feet are on the ground too now, and I wonder why this discovery did not have a bigger impact. Nobody has spoken about it: neither the Myeloma Beacon nor the IMF, for instance. Thank you, Margaret, once again

  2. Marica, just take a look at who, or rather, WHAT sponsors the IMF and the MMRF websites, as well as fundraisers of all sorts, patient meetings (!), medical conferences, hotel & travel expenses (not just for doctors and specialists but also for “celebrity” or “poster boy” patients, I hate to say…Hmmm, come to think of it, I wonder why I’ve never been approached by big pharma…LOL!)…you name it…
    It won’t take you but a few seconds to stop wondering, I think. Sigh.
    In my opinion, our only hope for a CURE rests with researchers like Dr. Bradner who share their discoveries OPENLY and for FREE.
    Remember when, at one point during his talk, he stated that, IF he had made this discovery inside a Big Pharma lab, it would have been kept a SECRET until that discovery could have been turned into a financial gain for the company. This didn’t shock me in the least, of course. But what I didn’t expect was to hear a researcher/MD speak about it…so OPENLY.
    Oh yes, I adore this guy!
    I’ll write to the Beacon to see if they might be interested in writing a piece about this discovery…

  3. Hi Margaret, I am also surprised that this discovery did not get wider attention in the same manner that the University of Pennsylvania’s killer cell gene therapy success got this summer. The researcher at Penn, Carl June, is dedicated to eradicating cancer and it is personal with him. His wife died of ovarian cancer at a young age. It would be nice if Time magazine, National Geographic or 60 Minutes, etc. did a major feature on Drs. June, Bradner, et al.

    Also, if you haven’t already, check out Dr. Bradner’s listing on the Dana Farber website. There is a further link to the Bradner Lab. When you enter the Bradner Lab site, there is a comment for researchers that they can easily order JQ1 at there convenience. Hopefully, every research facility in the world is requesting this. Also, Dr. Bradner has partnered with Tensha Therapeutics (don’t know if this qualifies as Big Pharma)to develop therapies based on JQ1. Google Tensha Phamaceuticals for their press release, etc.

    By the way, one of the sponsors of Bradner’s work is the NIH. That is a good sign. I, and several hundred people with MGUS and SMM, are enrolled in a major study at the NIH which studies the natural progression of MM from its precursor states of MGUS and SMM. My doctor there is Carl Ola Landgren. He is one of the leading MM experts in the world and is dedicated to finding a way to stop MGUS and SMM from progressing to active myeloma. Their is an SMM trial now using killer cells to see if it halts progression. Let’s hope it works.

  4. Hi Terry. I’m not surprised at all, as I wrote in my first comment of the day. For a variety of reasons. One of which is of course the fact that this molecule is available for FREE to anyone who asks (well, research labs, and even sigh big pharma, as Dr. Bradner mentioned in his talk). That’s super for us, less super for greedy big pharma…

    By the way, I’ve almost finished reading the full text of the MM JQ1 study, and it sounds as promising as what Dr. Bradner illustrated in his talk. Perhaps more. I’m working on a draft right now…

    The problem is that we are in the preclinical phase. Getting this molecule into Phase 1 trials could take a couple of years, as one of my blog readers pointed out in a private communication to me. But we shouldn’t be disappointed or discouraged. On the contrary, we patients can possibly lend a BIG hand to Dr. Bradner…by publicizing his lab’s research and putting pressure on our MM foundations to lend a hand, financial and otherwise. I’ve written to the director of the MM Beacon to see if they’ll publish a piece about it. I’d be willing to write it, actually (but I didn’t offer that…up to him to decide…). For free, of course.

    Another thing we can do is bring up Dr. Bradner’s research at ALL the MM patient/doctor meetings. Every single one. The more WE speak and write about this discovery, the less it can be ignored…Though I hope with all my might that Big Pharma doesn’t get involved. Oooph. That worries me, I confess. A lot. That said, though, I don’t think Tensha qualifies as big pharma (not yet, anyway!). It’s not listed on the stock market, e.g.

    Yes, I have checked out the Bradner lab. Very interesting. You can also check its list of sponsors, which includes the MMRF. Yup.

    I have a lot of respect for Dr. Landgren. And yes, I know about that trial. I’ve written a post about it. Fingers crossed. 🙂

  5. Hi Margaret, By the way, thanks for your tireless help in disseminating Bradner’s discovery. His talk is already posted on Youtube where it has over 10,000 hits and climbing. I also wrote several emails to the Beacon where I am registered and occasionally post. You would be perfect to write the article on behalf of all of us!

    I also have confidence that research facilities in other countries which have access to JQ1 will independently develop therapies without Big Pharma’s influence. For example, my wife is from Spain originally and we travel there frequently. There are major centers of cancer research there in Barcelona and Salamanca. My own case was reviewed by a famous MM expert there, Jesus San Miguel, who confirmed Dr. Landgren’s diagnosis of SMM for me. To me, both men are saints without any hidden agendas or commercial interests. Landgren is originally from Karolinska which awards the Nobel in medicine. GOOD KARMA!!!!!

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