I am re-thinking the clinical trial in NYC and need advice

Hissy_Fitz

nancy591 said:

scans
Does this trial have a large number of scans? I participated in a trial at MSKCC and the number of scans was as you expect. One prior to starting and one at the conclusion of the trial.

Scans....
No....they require a CT scan no more than 4 weeks from the start of treatment, one at 3 months and one after treatment - 3 or 6 months after, I don't remember for sure.

Carlene

leesag

Hissy_Fitz said:

The MIMOSA trial is
The MIMOSA trial is officially called "Efficacy Multicentre Trial of ImmunoTherapy Vaccination With Abagovomab to Treat Ovarian Cancer Patients (MIMOSA)". There have been several posts about it here. It started in 2006 or 07 and is closed now, as far as recruiting. It is a large, international study with (I think) over 900 women participating in the latest phase. The results of the study are due out very soon - sometime in the first half of 2011. If they are overwhelmingly positive the vaccine is apt to be fast-tracked thru the FDA process and approved before the end of the year.

I only realized yesterday that if I go forward with the Phase I vaccine trial in NYC, I will not be able to get the MIMOSA vaccine, if it should go into another round of tests. I would have to wait until it went "public", and I would have to drop out of the trial at Sloan-Kettering. Which I absolutely know already that I would do. The MIMOSA vaccine shows more promise than anything to come along in years - at least as as much as Avastin.

Of course, I risk almost certain recurrence, eventually, if I wait. Which is not to say I could not recur while on the MSK trial. I very well could. The whole thing is a crap shoot. I figure I have six months to get on something. That seems to be about the average length of time it takes the beast to show up again.

I am truly torn by this decision. I am totally discounting my family's input. They mean well, but their responses come from emotion, not hard evidence or cold logic.

Carlene

Six months out
I can't give you any advice about clinical trials, dear, but maybe I can offer some hope.

Six months without treatment and I'm still dancing with good ol' NED.

Love you!

Sending prayers that God gives you some guidance.

Leesa

nancy591

Hissy_Fitz said:

Scans....
No....they require a CT scan no more than 4 weeks from the start of treatment, one at 3 months and one after treatment - 3 or 6 months after, I don't remember for sure.

Carlene

also to add
When I was torn between two trials Dr. S steered me toward one over the other. He is on the board that reviews all potential trials for MSKCC so he knows what is coming in.

Hissy_Fitz

nancy591 said:

also to add
When I was torn between two trials Dr. S steered me toward one over the other. He is on the board that reviews all potential trials for MSKCC so he knows what is coming in.

Dr S did not mention MIMOSA
Dr S did not mention MIMOSA to me, nor did I ask him about it. He seemed absolutely jubilant that I wanted to do the new trial. Maybe because they started recruiting in Nov and so far have just two volunteers, including me.

I doubt I will get to talk personally to him on the phone, but I am going to call Sandra on Monday.

Carlene

Hissy_Fitz

anicca said:

You can stay with me.
Carlene, I realize you do not know me because I just joined and began posting recently, but I live in Brooklyn, 20 minutes from JFK and an easy trip via express bus or subway to MSK. I have a large (but messy) house, and you and your husband are more than welcome to stay with us (just me and my husband these days.) I may even be able to drive you to and from your appointments, depending on the days/times. One of my friends drove me to 5 of my 6 chemos, and I would love to be able to pay it forward.

I hope this can take logistics and cost somewhat out of the equation for you and help you to make a choice based purely on the merits of the two options.

Dinah

Thanks, Dinah....you are too
Thanks, Dinah....you are too sweet - offering to open your home up to strangers. My husband is right - we can afford the hotel. I am just a penny pincher by nature. The joke in our family is, if you give Carlene ten dollars, she will put five of it in the bank.

Carlene

MK_4Dani

Grants / Scholarships
I am wondering if there is a grant or scholarship $$ available that you can pursue. This site may even have something to offset the $$ of your travel. They give money to people investigating the effects of algae on trout spawning surely they can fund OVCA research! With your investigative and curious mind....YOU could find the $$ if available.

Sounds to me like you want to do it...to quote some of your words, "really, really, really, desperately, the next best thing".

The day trip was rushed. Staying there will be different and less rushed.

Unless there is a compelling reason, (health, financial) NOT to: finish what you started. You will be so proud of yourself. If the good lord doesn't want you to do this he is going to put some major roadblocks in your way.

Finally: your life is not trivial. Your willingness, or lack thereof, to pursue this is not a measure of your worth. You have enlighten / encouraged me: my next check-up I plan to ask if I can be a part of clinical trials for 1st NED. I want to contribute too!

Respecting ANY decision you make,
Mary

pjdreams

me too
Hi Carlene,

I'm currently participating in a Phase 3 Clinical trial for Morab-003. I was diagnosed with my first recurrence in Nov 2010 after enjoying 1 year in remission. (originally diagnosed Stage 1A Grade 2 clear cell).

I had a 2nd look surgery to drain fluid around my liver but numerous tumors were found all over my abdomen.

My current treatment is another 18 weeks of the standard carbo/taxol protocol (which previously gave me a 1 year remission) plus weekly infusions of the morab anti-body. My understanding is that the anti-body helps my immune system figure out better which cells are cancer and which are good cells. It's a blind study. I have a 2 out 3 chance of actually getting the anti-body.

I think the decision to participate comes down to Quality of Life. My commitment to the trial is definetely more time at the hospital each week instead of every 3 weeks. But my hospital is only 20 minutes away. I find the Quality of Life issue comes into most decisions I make now.

Some women wouldn't be able to participate in this trial because they couldn't take off work or need to take care of their kids or whatever. For me the time commitment is worth it and I'm able to swing it. If the drug helps me personally, great. If it eventually helps more women with this disease, all the more better.

It's a tough decision and I wish you all the best.

pj

nancy591

pjdreams said:

me too
Hi Carlene,

I'm currently participating in a Phase 3 Clinical trial for Morab-003. I was diagnosed with my first recurrence in Nov 2010 after enjoying 1 year in remission. (originally diagnosed Stage 1A Grade 2 clear cell).

I had a 2nd look surgery to drain fluid around my liver but numerous tumors were found all over my abdomen.

My current treatment is another 18 weeks of the standard carbo/taxol protocol (which previously gave me a 1 year remission) plus weekly infusions of the morab anti-body. My understanding is that the anti-body helps my immune system figure out better which cells are cancer and which are good cells. It's a blind study. I have a 2 out 3 chance of actually getting the anti-body.

I think the decision to participate comes down to Quality of Life. My commitment to the trial is definetely more time at the hospital each week instead of every 3 weeks. But my hospital is only 20 minutes away. I find the Quality of Life issue comes into most decisions I make now.

Some women wouldn't be able to participate in this trial because they couldn't take off work or need to take care of their kids or whatever. For me the time commitment is worth it and I'm able to swing it. If the drug helps me personally, great. If it eventually helps more women with this disease, all the more better.

It's a tough decision and I wish you all the best.

pj

PJ
I looked into that trial but ultimately went with another. How is the trial working out for you?

vj1

nancy591 said:

PJ
I looked into that trial but ultimately went with another. How is the trial working out for you?

Carlene
I was anxious to read your posts after returning from NYC. Don't ask me why but I had a feeling you might have some hesitancy, certainly not from lack of research. I am a strong believer in "gut" feelings or esp as my Mother always said. I do think the stress of traveling, particularly this time of year is an important element. We all have more stress because of this monster and I do think it is wise to consider all in making your decision. I admire you so for your fortitude and giving us all that extra push that is so important. I am currently waiting for my Dr. to advise me of what is available in clinical. I guess the bottom line for my input would be to get something closer to you and the mimosa certainly sounds inviting. Thank you again for your research, input, strength, etc. Whatever your decision my thoughts and prayers are in support of you.
Verna

Hissy_Fitz

UPDATE
I emailed Dr S's NP this morning to ask for some qualifying info on the MIMOSA project.

I re-read the criteria and for the first recruitment, you could not be more than 8 weeks out of treatment to qualify. She did not know, of course, if this will be true of the next phase.

She verified that the results are due to be published in April, and that participation in another vaccine trial would probably rule out MIMOSA for me.

I am still trying to make up my mind. I will talk to my doctor about all this, come Wednesday.

pjdreams

nancy591 said:

PJ
I looked into that trial but ultimately went with another. How is the trial working out for you?

the trial
Nancy,

I guess time will tell how the trial is working out. Since it's a blind trial I don't know if I'm getting the anti-body. I'm in the middle of my latest 6 rounds of carbo/taxol/anti-body. A CT scan taken after my 2nd infusion of chemo showed that of the 7 tumors in my abdomen they are ABLE to track, 1 near my lung has disappeared completely; 1 near my liver got bigger and the other 5 shrunk somewhat. So it's mixed results but I still see it as in the right direction. My CA-125 also dropped 10 more points to 54 so it's heading in the right direction.

These treatments are certainly more draining than last year when I had just plain old vanilla carbo/taxol and no tumors detected. I'm hoping to get back in remission and enjoy another long one.

regards,

pj