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Post-Chemo Treatment Options Post-Chemo Treatment Options

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  #11  
Unread 07-21-2003, 12:05 PM
Post-Chemo Treatment Options

Thanks for the number (and for asking your doctors about this trial); I just left a message. Once I speak with the research team, I'll post the criteria for participation. I have no idea whether I'm eligible or not, or whether the trial is underway at any Los Angeles medical center.
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  #12  
Unread 07-21-2003, 12:38 PM
Post-Chemo Treatment Options

Hi Siren

It is currently a phase II trial and has been underway since 2001. The slowness of it is due to the fact that it is only ongoing at NCI in Maryland.
Fortunately NCI is only about two to three hours from me.
The vaccine is given every three weeks and you could conceivably be on the trial for four years, if you choose.
You must be stage III or IV or dealing with a recurrence of an earlier stage.
Participants may have an elevated ca 125 but still with a clean CAT scan.
NCI administers immune system booster drugs along with the vaccine.
These booster drugs apparently are the cause of any side effects.
Basically tiredness, from mild to extreme. ANd then NCI will lower the dose of those drugs.
The trial has two arms, but all participants receive the vaccine. The difference is the route with which it is given.
These are just some of the facts I have learned. It sounds very interesting to me.
Sometimes I feel like I have been granted this window of opportunity and need to make the most of it.
Again, it is all about decisions that we will regret the least.

oxoxox karenann
  #13  
Unread 07-21-2003, 01:44 PM
Post-Chemo Treatment Options

Well, I just logged back on to post the participation criteria . . . but you already covered it. :-)

You also need to be a particular HLA-A201 type (they send you vials for a blood draw, which you then ship back). The immune-booster is Interleuken II.

The sad thing about this trial is that it is only taking place in Maryland. Participation for someone on the West Coast would necessitate flying to Maryland every three weeks for up to two years. Obviously, for cost and lifestyle reasons, this isn't feasible. I'm glad that you (Karenann) are closer and can think about participating.

I'm having the nurse send the disclosure document anyway.

It's kind of funny. I keep thinking about what I should do, and every which way I turn, it kind of seems like I should just do the diet/exercise thing and see what happens. I wonder if God's trying to tell me something (e.g., that it's not always necessary to do any follow-up since 50% of people don't recur). I just don't know.

Interestingly, I'm shooting one of my surgeon's weddings next year. I'm not charging her; I just can't take money from someone who participated in saving my life. I did tell her and her fiance that the advice she's given me -- even though she's moved on to another hospital -- is worth any monies I would have made from charging her my regular fees. It's nice always having a second opinion close at hand.

Karen -- let us know if you decide to move forward with this trial. It seems like side effects are minimal (some flu-like symptoms and possible redness/pain around the injection site). BTW -- Jeff is a cutie!

s!
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  #14  
Unread 07-21-2003, 02:15 PM
Post-Chemo Treatment Options

Hi Siren

It is interesting that she mentioned interleuken II as the booster to you. I can't recall that she told me the name. (chemo brain)
As a nurse in employee health, (where I sometimes cover) I have given that injection to a young hospital employee with hepatitis C. She receives it on a weekly basis. I don't know how the dosings would compare, but her side effects from it are pretty horrendous. Perhaps I am not so interested in this vaccine. But I will wait for the larger mailing that they send me to decide if I want to explore this further.
I truly appreciate how we all learn from each other on CC.

oxoxox karen
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