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What's Coming Down the Pike

GSRon's picture
GSRon
Posts: 1306
Joined: Jan 2013

Hello Ladies..!  OK, I have been reading around here for a while.  But I did not find a thread of this type.  Over in the Kidney secition one of our brainiacs started a thread with the above name.   This has all the latest and greatest new treatments in Clinical Trials.   Also for those that may not be aware there is this WEB site, check out AACR.   AACR has multiple conference and for those interested in gaining in depth knowledge may be a great resource.  Also note that as a patient / advocate you can join for free..!

http://www.aacr.org/

If you do a clinical trials search under Ovarian, there are 505 entries..!  I know there are some exciting new treatments out there... some have not yet started the first human testing.  One of them is CD47.

I mention CD47, because this could be the "silver bullet" for many types of Cancer...  So this is just one of many possibilities to watch.  Here is a link to some CD 47 info..  http://stemcell.stanford.edu/CD47/

Being I am being treated at Stanford, I have already raised my hand as a possible "lab rat" on CD47.

I hope this is of help to all of you...

Be Well All..!!

Ron

debrajo's picture
debrajo
Posts: 802
Joined: Sep 2011

Thanks Ron!  I'm not ovarian{Uterine}, but I would volunteer for "lab-rat" status in a heart beat!  God forbid I ever reacure, but I  saved the link you sent to my favorites.  Keep on the lookout for my particular bad boy, UPSC, cancer trial!  Best, Debrajo  

scantillon's picture
scantillon
Posts: 3
Joined: Feb 2014

Cousin Susan here (just so you can recognize my screen name)  Thanks for your amazing love and support. I am lucky to have you in my circle of friends, doubly lucky to be related. I am researching clinical trials whenever my brain is clear enough to plow through them. Warm hugs.

GSRon's picture
GSRon
Posts: 1306
Joined: Jan 2013

OH NO..!!  I am busted big time now..!!  Sealed  Nice self portrait..!  I really like the hair do.... heh...

Ron

mopar
Posts: 1954
Joined: May 2003

Thank you for all the info, Ron.  My radiation oncologist just attended a meeting about something coming up for breast cancer.  She couldn't say what, but said it sounds promising.

Welcome, Susan!  I'm in Michigan, too!  Just a small bio on me:  OVCA in 2000 and a recurrance in 2006.  Breast cancer dx in October 2013 - currently undergoing radiation.

I wish you both well, and hope that you'll visit often.  We're a great group here!

Prayers & (((HUGS)))

Monika

 

Kiss

 

2timothy1 7's picture
2timothy1 7
Posts: 345
Joined: Jan 2012

Thanks for riding over to post on this board to tell us what's coming down the pike!

Much appreciated!!

GSRon's picture
GSRon
Posts: 1306
Joined: Jan 2013

Guess it is time for me to put some..  "meat and potatoes" here... although some or all may not be new, this is one of many on going articles...

http://www.cancer.org/cancer/ovariancancer/overviewguide/ovarian-cancer-overview-new-research  

Mentions Avastin and Votrient.  Both have had some success with other types of Cancer.  I was on Votrient and it worked great...althought it was not Liver friendly for me.  Yes it may not be Liver friendly for everyone..

Not as recent.. but..  http://www.ncbi.nlm.nih.gov/pubmed/21913063

More info... http://www.ovariancancer.org/report-from-asco-2013-new-research-on-ovarian-cancer/    Pazopanib = Votrient

Here is a good link... lots of info.. includes results from some Clinical Trials  http://www.cancer.gov/search/results

 

I will add my 2 cents worth on Votrient.  This is a pill that comes mostly in 200 MG dose.  Max dose is 800 mg taken daily.  Stability can happen in levels down to 200 MG.  Side effects vary.. most common are Fatigue, diarrhea, hypertension, elevated Liver enzymes, weight loss, WHITE hair (no hair loss), some nausea, a few others.   I had nasuea for only a few minutes for the first two days.. almost nothing.  I did lose 14 pounds the first month.  But you need regular blood work, as elevated Liver enzymes is noticed..  I started at max dose of 800 MG, and then reduced to 600 MG, Liver enzymes got acceptable on the lower dose, but my Bilirubin shot up so had to leave the (working) Votrient.

However, I can only wonder... if Votrient works for some Ovarian Cancers, than perhaps some other targeted drugs may work as well..???  Hope there are some Clinical Trials going on to prove / disprove that..!

Be Well All..!!

Ron - "I don't want a pickle.. jus wanna ride my motor sickle.."

Alexandra's picture
Alexandra
Posts: 1299
Joined: Jul 2012

Ron's been talking about his beloved Michigan cousin for so long. It's good to finally put a face to the name, even if it's a drawing Smile

Come back often and feel better!

Ron - you are a fountain of knowledge, even more so since you're retired.

Luv,

Alexandra

Dee5678
Posts: 37
Joined: Feb 2014

Thanks so much for posting this. GREAT info!

lovesanimals's picture
lovesanimals
Posts: 1325
Joined: Sep 2011

Thank you for taking care of us ladies!  And welcome Susan!  Ron, I admire your motor sickle and Susan, I think your picture is very cute! Smile

Kelly

GSRon's picture
GSRon
Posts: 1306
Joined: Jan 2013

OK, kind of related.  In April I will be attending an annual Cancer conference in San Diego.  This conference is from AACR - American Association for Cancer Research..  I am going as a Patient / Advocate, which means I have to make a large poster and presentation.  But this conference will have the smartest researchers from all over... tell us all the latest and greatest findings.  I hope to make many of the special presentations and also try to take good notes.  If I learn of anything juicy for O.C, I will post it here.

http://www.aacr.org/home/scientists/meetings--workshops/aacr-annual-meeting-2014.aspx  <=link to the conference info.

http://www.aacr.org/home/survivors--advocates.aspx

Oh yes, thanks ladies for the kind words...!  Try and smile at least once a day...  I do..!

Be Well All..!!!

Ron 

GSRon's picture
GSRon
Posts: 1306
Joined: Jan 2013

Hey ladies... not sure if you are aware but.. one of the new buzz words are Immune-Checkpoint Inhibitors.   All kinds of stuff about PD-1 and PDL-1 treatments.  So far some good news on Lung Cancer.. but there are some trials that include O.C. patients..  Here is the latest scoop I found..

http://www.washingtonpost.com/national/health-science/new-therapies-raise-hope-for-a-breakthrough-in-tackling-cancer/2014/02/14/b4f8e4fc-8dad-11e3-95dd-36ff657a4dae_story.html

This one is already dated 2012, but is worth reading..

http://clincancerres.aacrjournals.org/content/19/6/1363

PD-L1 on Tumor Cells Is Induced in Ascites and Promotes Peritoneal Dissemination of Ovarian Cancer through CTL Dysfunction

Here is another interesting link

http://annonc.oxfordjournals.org/content/early/2013/11/26/annonc.mdt405.abstract

And one more...

http://www.ncbi.nlm.nih.gov/pubmed/23975756

 

Tired now.. later

Ron

GSRon's picture
GSRon
Posts: 1306
Joined: Jan 2013

Well.. This is not my normal happy story, but if I can help someone... I have to try.   I did not want to start a new thread...  but there is one issue I (we.?) need to be aware of, and not fall prey to...  the scammers.  Now there is no one that has any kind of Cancer that does not want to be cured.. we all do..!  But I feel strongly to be aware of those just trying to take our money and possibly cause harm along the way.  We are easy prey, after all.  We used to hear of con artists taking little old ladies hard earned savings...  yes.. there are false Cancer cures.  Some do nothing, some are very harmful, and some reduce our life clock's time.  This is what can be good about a forum like this...

So, yesterday, I met my new lawyer.. (old case started before I heard those 3 words..).  I told him this needs to be settled.. and gave him just a bit of my story.  Well, he responded with a story of his own... his Uncle..  This Uncle went down to Mexico for treatment.  No arguement, the guy was told it was too late, his Cancer was wide spread and an aggressive type.  So, yes I can see getting desperite, as would any of us.  But here was a couple in retirment, house paid for, etc..  He goes down to one of those "Clinics", they bilk him for everything... and yet he dies in the same time frame he was told before.  Sad, very sad.. well his wife now has nothing... zero.. the house was mortgaged to pay for the treatments, all the savings gone...  There is nothing good about this type of scenario.. 

Here is a link worth reading... I think it is dated, but will give you the idea.  As much as we want new drugs approved ASAP, the FDA process is meant to protect us... yes sometimes it fails..!  There are some new treatments soon to begin human trials... hope we all hang on to see a "cure" one day..  I pray for that..! 

Oh, I must also state that yes I have tried two of the supposed cures... a dear friend urged me to do it.. he was sure it would cure me.  I love him for his care and efforts.. sadly he died on Valentines Day... sigh..

http://www.quackwatch.org/01QuackeryRelatedTopics/cancer.html

Another article, but it is from 2000  http://www.ncahf.org/articles/c-d/caquackery.html  Actually here is the link to more current articles.

http://www.ncahf.org/index.html

 

NOTE:  I am not endorsing these articles, I am just providing the links for you to decide what is best for you and provide some awareness.  Again we are all different and must make our own decisions.

Ron

 

 

lovesanimals's picture
lovesanimals
Posts: 1325
Joined: Sep 2011

We cannot be told often enough to be aware of the scammers and quacks who take advantage of people desperate for hope and a cure. 

Praying for a real cure,

Kelly

GSRon's picture
GSRon
Posts: 1306
Joined: Jan 2013

Hi All..!! I hope all you ladies are properly misbehaving..! Innocent   Figured I would pass this one on.. a Clinical Trail combining Anti PD-1 and another drug.  For those new to the Anti PD-1 and Anti PD-L1 (often the "Anti" is left off to type less... heh).  These are fairly new treatments in clinical trials mostly for other Cancers.  But this trial is including Ovarian patients, which is why I posted it here.  Hopefully none of you are candidates.. but if you are, hope you get a spot.   A pal of mine just had his first Anti PD-L1 infusion a few days ago.  It took about an hour, and the only real side effect was a fever.  Fever is an expected side effect, and some think it is a sign it is working.   These new drugs have had some good results so far... so stay tuned..!

https://www.smartpatients.com/trials/NCT01714739

Another one of my "watch list" treatments is CD47.  This treatment has not yet started human testing, but hopefully starts this year..  CD47 is a protein that tells our immune system "don't eat me."  The treatment unmasks the Cancer cells and lets our immune system slay the little dragon Bas****s.  This has had a huge success in mice.. hope we are mice like enough..

Stay Well All..!!!

Ron

GSRon's picture
GSRon
Posts: 1306
Joined: Jan 2013

Already olde but still has a lot of good info...  Yes many of us cringe when we hear the word diet... well this video is different.. instead of telling you what not to eat.. this says what we should eat...  I had changed my diet to include more of these foods, 2 years ago now...  Some of the drugs mentioned were new and some were not FDA approved at that time... and the whole science is light years ahead today... just 4 years later...

http://www.ted.com/talks/william_li#t-765323

Ron

GSRon's picture
GSRon
Posts: 1306
Joined: Jan 2013

Hi Ladies...  OK, I am at the annual AACR Conference. (American Association for Cancer Research).  This is a huge conference about 28,000 people are here.  And a bunch of the brainiacs in Cancer Research..!  There are sessions on most types of Cancer and most of the latest treatments, plus those in or soon to be in clinical trials.  There are multiple sessions during each time slot, so no way can one person see them all.  BUT, I am scheduled to make a bunch of sessions that cross over to many types of Cancer.

So, here is the deal... if you have any questions, let me have them.  I can not promise to get them all answered, but I will try.  

Today I was sitting next to one of those brainiacs from UofMinnesota.  This guy is a researcher as well as a doctor, etc.   I mentioned that some drugs for one type of Cancer are now (finally) being tested for other types.  He smiled and said yes there is some value and perhaps additional treatments possible.  BUT, this year's buzz words related to Biomarkers.  Most of you (maybe all) are all too familiar with markers like CA125.  But that is just the tip of the ole iceberg.  It is thought that by identifying more Biomarkers, Doctor's will KNOW what treatments will not work and which ones should work.  This can be huge, as we all know taking a nasty drug that won't help you is of no value, while having the knowledge that the drug you will take is very likely to help you yields better results.  Additionally, this can lead to more treatments based on the markers.   Now a lot of this is over my head, but I understand getting the right treatment is a good thing..!

I must say it was humbling to sit with people that have had multiple Cancers and multiple reoccurances.  But I must tell you I heard the story of a 19 year Ovarian survivor.

Be Well All..!!

Ron

NoTimeForCancer's picture
NoTimeForCancer
Posts: 711
Joined: Mar 2013

Ron,

Thank you for the links and all the information.  I can only imagine what it is like to be at the conference.  Look forward to hearing more.

 

ConnieSW's picture
ConnieSW
Posts: 695
Joined: Jun 2012

I don't have anything specific to ask but look forward to having you share whatever you learn.  Take good notes!

Alexandra's picture
Alexandra
Posts: 1299
Joined: Jul 2012

Ron you are nominated Honorary Chair of the ovarian board (sans ovaries). Whatever info you can get at the conference is greatly appreciated.

I am curious why Stanford anti-CD47 trial has been pushed back again http://stemcell.stanford.edu/CD47/

Are any of the 5 new PARP inhibitors close to being submitted for FDA approval?

 

GSRon's picture
GSRon
Posts: 1306
Joined: Jan 2013

Ok, sorry, I have been slow to update here..  The conference was amazing..  And just so you all know, any of you could apply to attend next year.  Next year the conference will be in Philly, Pa.  Applications will be out later this year.  However, if you get accepted as a patient/advocate they will work you..! But it is very educational and you will be on top of the latest Cancer happenings.  So, there is a lot happening in the Cancer world, yes including Ovc.  Lots more clinical trials with both current and future treatments. 

Yes CD47 git pushed back... not sure why.  I will be at Stanford next week and will try to find out. The session that Dr Weissmann gave had us all wide eyed. And the Anti PD-1 and PD-L1 are in trials already and have had some amazing results.  Less side effects, better efficacy, a lot to like..!  So this is where I suggest you ladies stay dilligent and watch out for clinical trials that you may be eligible for.  I will post the link to the CD47 session... yes a lot of words that we won't understand, but then there will be a lot you will understand.  It is 30 minutes and I think you will like this doctor..   Plus there are a bunch of WEB casts for viewing.  More to follow...

Here is the one video link..  http://webcast.aacr.org/console/player/23028?mediaType=podiumVideo&

Ron

GSRon's picture
GSRon
Posts: 1306
Joined: Jan 2013

Did someone mention PARP..?  Here is a 30 minute session from the AACP meeting...  lots of good info... and we can see how results can happen when people team up..!  Hope this treatment starts to help you all.. very soon..!!!  And yes some big words.. but lots of good stuff in easy to understand language.. at times...

http://webcast.aacr.org/console/player/23132?mediaType=podiumVideo&

Ron

scantillon's picture
scantillon
Posts: 3
Joined: Feb 2014

I haven't had energy to comment (or even to read) lately but here I am today.  Just learned my CA-125# increased (is now 100) rather than decreased this month. Gemcitabine has lost its magic touch for me. If the change remains within a 10 point range they will consider it evidence of "stable disease" but in my experience once my number rises it continues to rise.  My very clever cancer cells have figured out a way to grow again.  Treatment is hard enough to suffer when it actually works, but so much more discouraging when it appears not to be doing its job. I won't know more until May 12th.

Ron (cuz o' mine) thanks for the helpful links.  I will try to look through them between clients (yes, I am still working) or at end of day if my energy holds.  Still waiting for SSDI to review the medical records... soooooo sloooooowwwww.  

Sometimes I think they're waiting for me to die so they don't have to bother paying at all.  okay, consider some of this moodiness to be caused by steroids on board. I apologize for my glumness.

on the plus side: I am waiting to hear the results of my gene mutation study.  That might give us more information/options, too.  We'll see!

I think Matzo Ball Soup for lunch will cheer me up.  Happy Passover!

here's my own digital story made about 14 months ago - before my first recurrence (I am now in my second recurrence)
 http://www.youtube.com/watch?v=zzcPlItUnw0‎ 

GSRon's picture
GSRon
Posts: 1306
Joined: Jan 2013

Yestarday was pretty good  out here...  My Cardio doc was pleased and took me off of the amlodipine... blood pressure is on the low side of normal without it... nice..!   Then I went to a community Seder at UCSC (Santa Cruz)... there were like 80 students, over half coeds... sat at a table of them... food was awesome..    I told them to look around the room... about 8 people per table... then told them that the odds are that one person per table will have Cancer... and then said.. yes, and at this table, I am it...   I got some odd looks, but the smartest one, politely smiled and thanked me...    No, not the same as we did so many years ago... but then it made me feel 40 years younger....

Soooze.... I have a hunch some of the ladies here will know if that kind of rise is an indicator of anything or not...  this is an area I have no experience...    But also, as I suggested there are a bunch of clinical trials... one of my favorite people here is preparing for the PARP trial... hope she gets in..  Lots of optimism over this one...  And lots of new treatments on the horizon..

I have also registered for another confence later this year..  And tomorrow is the big day.. find out what my scans say...

Be Well All..!!

Ron

scantillon's picture
scantillon
Posts: 3
Joined: Feb 2014

I spoke to the clinic when I saw the blood results and the "fellow" that responded assured me that if the number remains within a 10-digit range they don't consider it a sign of new disease. IT IS MY EXPERIENCE, HOWEVER, (having been through this twice before) that once my number starts to rise, it keeps on going up.  This triggers a scan for new evidence of disease and whatever treatment comes next.  I know how it works FOR ME.  Clearly, the "fellow" in the clinic isn't as familiar with my case as I am.  I'm willing to be wrong. I would love to be wrong about this. 

 

AND my matzo balls are ready!

GSRon's picture
GSRon
Posts: 1306
Joined: Jan 2013

Yes sadly the wait and see... so when is your next CA125 test..?  I was hoping one of the other women would reply.. they have a lot more experience than I do...  So, do you put any garlic in your Matzoh Balls..?  Which reminds me.. time to get mine going...  Tomorrow is a big day here.. first another Phlebotomy, then meet with a couple of Oncologists to discuss my scans... 

Love

Ron

GSRon's picture
GSRon
Posts: 1306
Joined: Jan 2013

Hi All..!!  OK here is a great video.. much easier to understand than some... the message is pretty clear, and exciting..  I bet there is a trial that is for Ovca as well... check out the Governemtn clinical trials section and see if there is a trial for you...

http://www.scientificamerican.com/article/wolchok-video-who-knew-cancer-has-an-off-switch-video/?WT.mc_id=SA_SA_20140415=

Oh yes, scan results were mostly good... the Warden gave me another 6 weeks off for bad behavior... heh..

Ron

GSRon's picture
GSRon
Posts: 1306
Joined: Jan 2013

Hi All... here is a link to an interesting video on Immunotherapy...  I did not hear OVCA specifically mentioned, but "all Cancers" is pretty inclusive... and I know there are some Clinical Trials going on for OVCA...   This is an hour long video... pull up a chair... a bad of popcorn or..??

https://www.youtube.com/watch?v=XGeqAEr1RnE&list=UUIRzxohZ6SbwsPqHFQGMJ7A

 

Ron

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