2nd Round Chemo Complete / Remission/ Phase II Vaccine Trial ...

NCEllen

Sorry for this long post but it's been a looong time since I've posted at all. I've kept up pretty much with the joys, sorrows, frustrations and HOPE of the Teal Warriors via reading the board late at night. Lots of tears for loss, tears for daughters, sons and husbands who have lost wives and moms (my heart breaks for my own daughter, son and husband to have to put them through this), tears for families..and friends of this board; but also those tears of JOY for goals reached and some really great stories that make me LOL!!!! ....and of course lots of prayers for healing hearts and for those just joining the fight. We learn so much from each other and gather strength.

My husbands prostate cancer is progressing. He's on two chemo agents and is still working with the help of pain patches and pain meds when needed. We did manage a family trip to the beach last week and put some energy to good use playing with our 6 month old grand-daughter. Our son-in-law deployed to the boonies of Afghanistan for 7-8 months and my son is upside down in trying to sell his house. Know what?? This stuff called life has kept me occupied enough to get through my own aches and pains.. along with some good pain meds, anti-depressants and some great sugar cookies from Betty Crocker.

So, now my can(not)cer news..I finished my eighth treatment of Carbo/ Taxol for my 1st recurrance 3 weeks ago. Yesterday I had a follow-up my my gyn/onc. I'm platinum sensitive and had been in a randomized trial of 8 treatments of Carbo/Taxol without Avastin (GOG 0213). My CA-125 was within normal limits after the 1st chemo, my CT in May showed 65% tumor reduction and my CT scan from this past Monday showed NED..still in awe of that report. So, the doc and research nurse presented me with the Phase II Vaccine trial via the MSKCC study....Carlene, I re-read your post from Jan. It's the same Phase II that you referred too. It actually started June 2010, except this one that I'm joining is a double blind study so I'm not sure which group I'll be in. One group will recieve just the antigen OPT 821 and the another group will receive the antigen OPT 821 and the additional antigens that Carlene (aka: Hissy Fitz) took.

The name of the trial is GOC 0255. aka: Phase II Randomized, Double Blind Trial with a Polyvalent Vaccine-KLH Conjugate and OPT-821 In Patients with Epithelial Ovarian, Fallopian or Peritoneal Cancer in Second or Third Clinical Remission.

I hope the following link opens you can paste it in and I applogise in advance if this is repeat info;

http://www.mskcc.org/mskcc/shared/graphics/Marketing/Sabbatini.pdf

I believe our Leader of the Pack- Carlene must be one of the positive patients in the report by Dr. Sabbatini. This trial that I'm enrolling in will last 18-20 months with 11 vaccine injections (labs and CT's). Hopefully as with Carlene I will be a 'good' statistic and the outcome will get FDA approval to at least move on to Phase III..lets all hope for that and a cure for all! Deep in the heart (of Texas still - although I'm in NC, thank God for Blue Bell ice cream). The study at my cancer center- Blumenthal in Charlotte is only accepting 2-3 patients to enroll and I'll be the first one for this area. Fingers crossed that all labs are a go for me and ((Hugs))and Blessings to all this board - Ellen

PS: Has anyone heard from Libby? (LPack) I sent an e-mail to her several weeks ago and have seen nor read anything from her in a long time..

Cafewoman53

great news
How exciting to be in a clinical trial like that ! You and everyone who participates are my heros !Good Luck with your labs ! Oh I forgot to add don't you just love it when life gets in the way of thinking about our disease ?
Colleen

Hissy_Fitz

Ellen, that is great! The
Ellen, that is great! The NED report is great and the news about the trial - both those are FANTASTIC!!!

You will LOVE Dr Sabbatini.

And don't be a stranger, girl.

Carlene

kayandok

Ellen,
I have really missed reading your posts, you are such an inspiration to me! I am so glad to hear good news from you.
Hugs,
Kathleen

PS Last I saw, Libby was on the back of a motorcycle going somewhere!

LaundryQueen

kayandok said:

Ellen,
I have really missed reading your posts, you are such an inspiration to me! I am so glad to hear good news from you.
Hugs,
Kathleen

PS Last I saw, Libby was on the back of a motorcycle going somewhere!

KLH vaccine
@ Ellen: Let's hope you get some kind of immune reaction to the vaccine like Carlene did. I've been doing a KLH (dendritic autolagous) vaccine for the past month but it turns out that I am completely anergic!

That means I am not reacting to the KLH antigen (protein from a shellfish) that is mixed with my tumor lysate. This totally sucks! The doctor is waiting for me to get at least a "mosquito bite" looking reaction but nothing is happening.

So, I went and got a TB skin test to see if I would react to that. I am one of those people who have had so many TB skin tests over the years that I had started reacting to the stuff in the TB skin test even though I don't have TB. I usually have to have a chest x-ray to prove I don't have TB...but not this year.

Even the TB skin test is totally non-reactive; so I am convinced that I am really am anergic after all. Did I say this totally sucks already? Hahahahaha!

Now I gotta come up with a new plan...will keep you all posted.

LQ

NCEllen

LaundryQueen said:

KLH vaccine
@ Ellen: Let's hope you get some kind of immune reaction to the vaccine like Carlene did. I've been doing a KLH (dendritic autolagous) vaccine for the past month but it turns out that I am completely anergic!

That means I am not reacting to the KLH antigen (protein from a shellfish) that is mixed with my tumor lysate. This totally sucks! The doctor is waiting for me to get at least a "mosquito bite" looking reaction but nothing is happening.

So, I went and got a TB skin test to see if I would react to that. I am one of those people who have had so many TB skin tests over the years that I had started reacting to the stuff in the TB skin test even though I don't have TB. I usually have to have a chest x-ray to prove I don't have TB...but not this year.

Even the TB skin test is totally non-reactive; so I am convinced that I am really am anergic after all. Did I say this totally sucks already? Hahahahaha!

Now I gotta come up with a new plan...will keep you all posted.

LQ

LQ -
Hi LQ! Thanks for your update. How many injections have you had so far? My TB tests have always left just a red mark (but not raised). Which trial are you on? (KLH only?)

The schedule I was given is inj. once a week for 3 weeks, then 4 weeks later, then another 4 weeks later, then every 12 weeks until week 83. This is all if I don't recure at which time the trial will cease. I've already decided that if my CA-125 starts to double or triple even in the normal range I'll request a CT scan - I'm not waiting for it to jump out of range again to start something else. I will most certainly take a more pro-active approach for me instead of waiting for the doc. Can't hurt to ask and seek.

I will find out today about my acceptance for the trial. This past Friday I had lab work and a chest x-ray plus a Ca-125. The study includes periodic blood work including a monthly CA-125 for awhile, and several CT scans along the way.

The study is double blinded so I won't know wich study group I'll be in: KLH only (the polyvalent antigens plus the OPT-821 vaccine) or just the OPT-821 alone.

For those who read Carlene's 'shrew' venom post - I found it interesting that the KLH poly-antigens are made 'from a snail-like marine mollusk called a keyhole limpet' (Hmmm...maybe Mr. Limpet was incredible after all) and 'has been used for many years to boost the immune system in animals and in people'. That is why a person can't be in the study if you're allergic to shellfish. (I personally would never eat escargo, but hey if I don't have to look at the little slug the better off!)..anyway, the OPT-821 is 'derived from the bark of a tree'! (name of tree was not mentioned in my review paper-work)

So, the way to go for a natural cure for OVca?. chew on trees and eat snails!! and don't forget to 'tame that shrew'- (thanks Leesa for remembering that read - I may have to look at that again as it is a great story).

I'll keep you posted on this adventure too and I would be interested to know about others on this Phase II study. Carlene- how long will they follow you? As your trial is working for you would you be able to move on to the PhaseII trial as well? Seeking shade and hoping for a little rain. loves and ((to all)), Ellen

LaundryQueen

NCEllen said:

LQ -
Hi LQ! Thanks for your update. How many injections have you had so far? My TB tests have always left just a red mark (but not raised). Which trial are you on? (KLH only?)

The schedule I was given is inj. once a week for 3 weeks, then 4 weeks later, then another 4 weeks later, then every 12 weeks until week 83. This is all if I don't recure at which time the trial will cease. I've already decided that if my CA-125 starts to double or triple even in the normal range I'll request a CT scan - I'm not waiting for it to jump out of range again to start something else. I will most certainly take a more pro-active approach for me instead of waiting for the doc. Can't hurt to ask and seek.

I will find out today about my acceptance for the trial. This past Friday I had lab work and a chest x-ray plus a Ca-125. The study includes periodic blood work including a monthly CA-125 for awhile, and several CT scans along the way.

The study is double blinded so I won't know wich study group I'll be in: KLH only (the polyvalent antigens plus the OPT-821 vaccine) or just the OPT-821 alone.

For those who read Carlene's 'shrew' venom post - I found it interesting that the KLH poly-antigens are made 'from a snail-like marine mollusk called a keyhole limpet' (Hmmm...maybe Mr. Limpet was incredible after all) and 'has been used for many years to boost the immune system in animals and in people'. That is why a person can't be in the study if you're allergic to shellfish. (I personally would never eat escargo, but hey if I don't have to look at the little slug the better off!)..anyway, the OPT-821 is 'derived from the bark of a tree'! (name of tree was not mentioned in my review paper-work)

So, the way to go for a natural cure for OVca?. chew on trees and eat snails!! and don't forget to 'tame that shrew'- (thanks Leesa for remembering that read - I may have to look at that again as it is a great story).

I'll keep you posted on this adventure too and I would be interested to know about others on this Phase II study. Carlene- how long will they follow you? As your trial is working for you would you be able to move on to the PhaseII trial as well? Seeking shade and hoping for a little rain. loves and ((to all)), Ellen

uncontrolled experiment
@NCEllen: I am an uncontrolled, unblinded experiment where N = 1. Which is to say I had a vaccine made from my tumor cells and mixed with the keyhole limpet adjuvant and am being treated outside of a clinical trial by a local doc who has a personal interest in cancer vaccines.

I've had 4 weekly injections so far and, since I am anergic, I'm going to take a break and not waste the vaccine. It is too expensive to waste. And I don't want to have to harness

I found out that Zometa may help me kick in my "gamma delta T cells"--the immune cells that work with dendritic vaccines.

Will keep you posted.

LQ

LPack

kayandok said:

Ellen,
I have really missed reading your posts, you are such an inspiration to me! I am so glad to hear good news from you.
Hugs,
Kathleen

PS Last I saw, Libby was on the back of a motorcycle going somewhere!

LOL!
Kathleen,

I was on the back of a Harley and we spent 4 days at Gatlinburg! What fun!!

I did update Ellen.

I will post an update here.

Love,
Libby