Vaccine Clinical Trial, may not be able to go
 

i am so torn, I have an appt thursday dec 1 to go to john hopkins for a consultation for breast cancer vaccine clinical trial. I am not sure I can go thru with it.
The trial will require me to go to baltimore for 8 days every 4 weeks for treatments some lasting 4 hours while others are only 30 minutes. the trip is a airplane ride. i will have to be away from home for 8 days and in a hotel. I have my mother living with me, she has for 4 yrs she has alzheimers and has gotten far worse in the last 6 months. I also have custody of 2 grandkids 12 and 7 yrs old. i have a wonderful husband and hi support is priceless but I am getting concerned about the time away from home this will require. I live close to louisville ky..i wish they had something at Vanderbuilt in Nashville or the John Brown cancer center in Louisville.
i am afraid i am selling myself short by not going thru this trial that i am qualified for but ther is the family obligation. I could take my mom with me but what would we do for 8 days in a hotel room and i am not one to take mom and roam the streets of a strange city. I am just in a dilema. I want to get the vaccine but just not sure this is the right time. I have a 2nd cousin that lives in baltimore and we could stay wiht her..but she is in california right now with her daughter and will be there until 1 march 2012. Her daughter is a breast cancer survivor but jsut has a re-occurrence in her bones. that is why her mom is there for 6 months. Please share your feelings on this situation I am in... thanks! Bonita

Re: Vaccine Clinical Trial, may not be able to go
 

Bonita,

Is the trial a double blind? Can you be sure that you will be getting the vaccine that you want?

Since you are currently NED - considering all the factors, perhaps you can wait for the vaccine to get approved? (Let others be the guenea pig :) or find a trial near you?

Re: Vaccine Clinical Trial, may not be able to go
 

Bonita, you are an extraordinary person to be such a good carer to your extended family. Jackie's point was a good one. If you were to sacrifice so much to the trial you would want to be sure you are getting the vaccine. Is there a possibility of deferring your enrollment until you have the family support available in Baltimore in March? My very best wishes with your decision and again you have my warmest admiration.
Trish

Re: Vaccine Clinical Trial, may not be able to go
 

Hi
I wondered the same as Jackie and Trish.What I wasn't sure of was how many doses of the vaccine you needed? Most seem to be over a period of months which makes things difficult.
May I ask why you picked this particular vaccine trial? I wondered if you had considered others like the one Steph is on at Seattle.
Ellie

Re: Vaccine Clinical Trial, may not be able to go
 

I was told I will be getting vaccine, no placebo stuff. one of our sisters on here went to this trial. I talked to the doctor by phone . she said the trial was in phase 2 and very small only 20 participants.
I picked this trial cause I was off herceptin more than 3 months and NED and qualified. iti s over a period of 4 months i think. I would have to go for 8 days in a row, then once a week for 4 weeks then back again for the 8 days. this is over a 4 month period.
My husband and family members are concerned about what will be put into me (cancer cells ) i dont think that is the case.. but still concerned. when i asked my doctor about clinical trials at the end of my treatment, his response was "we gave you the standard treatment and it worked, what are you looking to prove with clinical trials?" he didnt think i needed anything further. then we started hearing about the vaccine. I guess I just wanted to do anything I could to prevent it coming back (My oncologist said the chances of return is 50%) I can deal with that..I will be on the side of the good 50%! that is better than 85%-15%. when you feel good, and look good it is easy to forget momentarily what could be lurking in the back ground. I jsut wanted to do something to try to help me fend off the cancer should it ever try to return. alot of mixed feelings over clinical trials. Now my sitter situaton for thursday has come up with some obstacles and I just wonder if this could be a sign that i need to just stay home and use the plane tickets we bought to go on a "fun weekend" somewhere in the future. Sorry to ramble on but I think, more than anyone, you guys can identify with my anxiety over this. I am thankful for all the positives I have. alot of clinical trials are taken advantage of when there is no other alternative. this vaccine trial is different, but scary too. My husband agrees with some of you - let others be the guinea pig. I value all your thoughts and input. have to decide something to day so my husband can take off work or i can cancel airline tickets... thanks!! Bonita

Re: Vaccine Clinical Trial, may not be able to go
 

Baltimore was closer to me than Seattle. I live in ky so when southwest has sales i can fly to baltimore for $59 one way which is great. but with my family situation at home I am seeing that the comittment may be too much and to find quality dependable care in my absence is not always easy.
One of our sisters on here did this trial but when i talked to her she was only a short distance from baltimore and was able to drive in for her treatments. I could do that at vanderbuilt in nashville. that is only 2 hours away but nothing available there as of yet.

Re: Vaccine Clinical Trial, may not be able to go
 

I don' t know the rules of the trial you are considering, but I think you should talk to your own oncologist about your circumstances. Perhaps your oncologist can talk to the doctors a Johns Hopkins and see if they can work out something for you, so you won't have to travel or be away from your family so much.
Perhaps there will be trials available in your location in the future. You could ask your oncologist or the nearest research center about those things.
Good luck. Take good care of yourself.

Re: Vaccine Clinical Trial, may not be able to go
 

My husband has a saying "sometimes the situation is smarter than we are". Meaning that things answer themselves, if we look closely. You seem to be getting alot of signs, or roadblocks, that are telling you something.
I admire your determination and dedication to taking advantage of all that is offered. But I agree with the others that it might be best to inquire about upcoming trials closer to home.
Keep the faith.

Re: Vaccine Clinical Trial, may not be able to go
 

Dear Bonita -

You have my admiration with how much you have taken on to keep your family together and raised properly. It is added impetus for you wanting to do all you can to stay healthy and keep the cancer from coming back.

I really would offer the U of W trial that I am in for consideration.
http://depts.washington.edu/tumorvac...ntific_133.php

There are only three shots and you could fly in one day and leave the next. The final blood draw can be done at your own clinic at the one year mark.

I had my Informed Consent session, signed it, and had my physical while my vaccine was being sent up from the lab at the U of W Medical Center. So first appointment took less than the 4 hours they mention. You can have a morning appointment and be on a plane home in the afternoon.

The National Cancer Insitute helps find free or very reduced price lodging. Some of the ladies I met here even stayed at the Sheraton downtown at NO CHARGE.

So nothing like 8 days away from home and you have a wide choice of airlines.

Last week I was told there are still about 15 slots for the phase one that I am in. There are several patients starting in January, and that is counting those.

Re: Vaccine Clinical Trial, may not be able to go
 

oh Steph I will check into that for sure.. Bonnie, I was thinking the same thing. too many obstacles keep popping up. It all seemed doable 4 weeks ago when I inquired about this and now the doors are shutting it seems. Steph I will check into this for sure. it sounds like you get the vaccine at one time and then go for a year? the one in baltimore had so many follow ups and weekly herceptin treatments while getting the vaccine. I mean it sounds great and would be awesome if I lived closer and could drive in for a the weekly treatments. You ladie's have helped me jsut like I knew you would. No one on this earth knows how we feel but our sisters on this board. thank God for each of you and your thoughts, prayers and opinons. I will call today and cancel the plane tickets and the appt. I can use the ticket credit at another time and maybe even for my husband and I to go to seattle. we have several friends there with the military so lodging may not be a problem but even a night in the hotel sounds inviting. thanks again ladies. Bonita

Re: Vaccine Clinical Trial, may not be able to go
 

Hi Bonita,
I had considered John Hopkins, but went with Univ. of Wash because of the time commitment. I have three kids at home, and knew I couldn't be gone that much.

I flew in on a Mon, had my appointment on tues, and flew out on Wed. This month I will fly out on a Tues, and fly back on Wed. I will have to go for 4 trips.

The ACS provides help with airfare and lodging, if you need it.

Laurie

Re: Vaccine Clinical Trial, may not be able to go
 

Yes, Bonita, there are three vaccines taken one month apart. Then a blood draw and physical at the 4th month. So that makes 4 trips, however you only need to stay the one night if you want.

Get hold of Stephanie Parker, Research Coordinator at the Tumor Vaccine Group - sparker7@uw.edu

She will get you lined up. Keep me posted and keep asking questions.

Re: Vaccine Clinical Trial, may not be able to go
 

I had the same problem I would have to fly to Houston stay 1 week then come back for 3 days once a month. Having young children and working full time I couldn't do the trial. It is very disapointing but I keep my eye out for other trials that I can do locally.

Re: Vaccine Clinical Trial, may not be able to go
 

Bonita,

I just inquired about the John Hopkins trial last week and spoke with Maureen. I have an email into my onc and I will see what she says about the trial. My onc is at a large teaching hospital in Chicago and she is current on all the latest Her2 developments. The time commitment is huge and I live in Chicago, so flights, hotels, and I still work full time and carry the health insurance on the family so I too would be juggling a lot. Also there are 4 sets of scans involved with the trial, which does not set well with me either, but like you Stage IIIc is a scary place to be and I want to throw everything I can at this so I don't go Stage IV. I expect to hear from her this week. I read your post and could not believe the similarities in the way you feel and the way I feel about this trial. I just got done being a patient, and now would be a patient for another year.

Re: Vaccine Clinical Trial, may not be able to go
 

I heard if another vaccine trial in seattle I am checking Into. Travel is alot less time and you go 4 times I think then the booster. The trial in Baltimore is very I depth but I just can't be away from home for 8 days because one day is a 5 hr hercrptin treatment and next day is 15 minute appt to check the site. It would be awesome if we could do some of it at our own doctor and have the results sent to John Hopkins I asked about that and the foc in Baltimore said that could not be done. She says this trial is small. About. 20 people keep
In touch Jill. We need to talk! Bonita

Re: Vaccine Clinical Trial, may not be able to go
 

Bonita,

I am unclear from your signature whether you have metastatic disease. Was there actually cancer in your neck/lung? If so, I think it would be important to be on Herceptin. (I hope I am not out of line for suggesting this.) I would go for a second opinion at a major cancer center near you, and ask their advice about treatment and their thoughts on the vaccine trial. If you do have metastatic disease, maintenance Herceptin might be a surer route to keep the cancer at bay than a vaccine trial, and wouldn't require being away from home.

Good luck!


Jill

Re: Vaccine Clinical Trial, may not be able to go
 

my oncologist said it was a local metastesis since it was in 2 nodes in my clavical area on the same side as my diseased breast. he said it was on the other side it would have been mestatic because of the distance. not real sure about all that. the node involvement is what got me characterized as stage 3C, which is early stage, so i have been told. the spots on my lungs were 2 little spots 3 mm each maybe. they said they were too small to biopsy. my radiologist reviewed the scan and said that was where he radiated me so it was his opinion these were scars from radiation. my oncologist said he would agree with that. i go back in february for new PETscan. it will be 6 months after my last one. .i asked my oncologist to check me in 3 months he said no 6 months was fine. kind of bothered me to wait - we have good insurance and it would be covered but he said no. I am not sure if he said that cause i really didnt need a scan in 3 months or if he wanted me to have a good holiday before finding out if the spots on my lungs was growing. he did tell me it was 50 -50 chance of it coming back or not coming back. I am determined to be the 50 percent that beats this thing. I asked my oncologists about clinical trials after my treatments were all done. his reply was we gave you the standard treatment and it worked so what do you hope to prove with a trial. i find myself some days living a normal life....and loving it.. those are the days i forget about the cancer.

Re: Vaccine Clinical Trial, may not be able to go
 

Hi Jill, I wanted to respond to your post, as I am stage 4 and did stop treatment to do the vaccine trial in Seattle. I had been NED for 8 months when I started the trial in Oct. 2011, but my dr made it very clear to me that he thought the cancer would come back.
I wanted to do something that could increase my chances of possibly beating this. So , yes it was a risk to stop treatment, but I thought it was a risk worth taking.
The good news is that I had a Pet scan last Thur, and I am still NED, and I will be starting treatment again (Herceptin and Tykerb) in 2 weeks.
Laurie

Re: Vaccine Clinical Trial, may not be able to go
 

Bonita,

I am Stage IIIc. Just completed my year of Herceptin in December 2011. I am feeling insecure because my treatment is over. I was aggressive as I could be, bilateral mastectomy, 6 rounds of TCH and a year of Herceptin.

My onc said no the the trial. She responded in an email but did not elaborate. What I am trying to accomplish is to not ever progress to Stage IV.

Re: Vaccine Clinical Trial, may not be able to go
 

Jill - I find it strange your doctor would tell YOU what to do. Seems to me it should be YOUR call whether or not you want to participate in a vaccine trial.

I would ask for onc's reasons for recommending against.

LAURIE - so you are finished with travel to Seattle? Sorry we missed each other between our holiday and other schedules. I had my big blood draw last week and my physical. All is well. I have no side effects from the vaccine and ampligen that I can tell.

Glad to hear you had a good PET and NED is still sitting with you.

Doreen said that she will let me know in a month or so whether I had an immune response. (Once they analyze my blood samples.)